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Thursday, November 8, 2012 6:53 PM CST sorry so long.
I am now on hospice and preparing to die.
the nausea I mentioned was probably from my gallbladder. on october 10 I spiked a fever & went to the hospital. I was also in extreme pain.
I had a blood infection & scans revealed my gallbladder burst and I had necrosed tissue.
i was able to transfer to the picu. after debate a drain was placed to remove leaking fluid from my gallbladder. really helped my bloating.
I am on an i.v. pca dilaudid drip to control pain. I haven't been off the vent in a month due to infection issues.
I was determined too high risk for surgery and am home on hospice.
my temperature is on the rise which means the blood infection may be returning. i will not treat it (came from gallbladder leak originally) if it returns.
I know there is life after death & I have great things waiting. I have a post prepared that will be put up by family after I die.
thank you for all your support. I ask for prayers for my family & finances. if you'd like to contribute to final expenses you can send money to Christamae Zimpel 3071 Malik Ave Ceres, CA 95307
thank you!!
Sunday, September 16, 2012 5:38 PM CDT wow. it's been awhile. thanks for sticking with me. I have been struggling with what to do with my life and just being a burden and being tired of fighting.
I am on 2 kinds of life support (vent, tpn) and every day I deal with a host of problems and meds/treatments to try to keep those problems at bay. my biggest issue right now is my sats dropping.
I keep falling asleep & my o2 drops & I will wake up with the vent on. I hate wearing the vent so I want it off. But doctors said leave it on for 20 minutes. So I get into fights about being an adult and my body, my decision, etc. a lot of conflict...I do have some nursing but there are so many rules & politics & always being watched & having to act perfect @ home. a lot to digest. just wondering who 'm meant to be
Sunday, May 27, 2012 5:06 PM CDT Insurance in California is trying to take everyone's oxygen. Tuesday (29) I have to go to the doctor for a desat test. They take off the oxygen and my oxygen must drop to 87 for me to continue to qualify. So I get to pant and gasp with my heart racing to prove I am in danger.
knowing me my co2 will probably skyrocket...
I am worried my o2 won't drop. no oxygen=no talking. major stress...
I have been a bit down. frustrated with all the healthcare hoops you have to jump through. seems like my days are just medical routines and meaningless activities. Yet Dad is so overwhelmed I don't see how he could possibly take me to school and nurses aren't allowed to lift.
just trying to figure out what to do with my life.
Sunday, April 29, 2012 5:48 PM CDT Well I have had some medical chaos.
The 19th I had another seizure and was unresponsive. The prescribed med for a seizure I was given didn't work. So we called an ambulance. The local hospital couldn't get my seizure to stop and didn't feel capable of handling my care so I was lifeflighted to UCSF. I am very grateful that Dr. Soifer allowed me in the PICU. This also got my Dad &sister a room in family house which is free and only a block away.
When I woke up from my seizure I was alone in the PICU & very scared and confused. Dad was on his way. The nurse tried to explain things but I thought I was dreaming. I can't even push the nurse call button so I was super scared. One thing that did help was a phone alarm Dad set up. The nurse could keep that would beep when I pushed a special switch. This way I could at least signal. Fortunately I was released Friday afternoon. My anti-seizure prevention med dose was raised. But I have no back up med for if I have another seizure. So I would have to go to the hospital. I have now been diagnosed with epilepsy. Something else to add to my list.
It was a harrowing experience. But everything worked out the best it could. Our friend Laura, helped out. I was in the PICU and we had family house. I had the phone alarm (until the battery died). I don't seem to have severe after effects. Memory loss is the most frustrating effect of these seizures.
I had my my gj tube changed the 26th. It is an invasive procedure done in interventional radiology. Typically it's done under general anesthesia. But I try to avoid anesthesia because anesthesia wrecks my lungs. There is one fairly painful knifelike pain as the tube passes into the jejunum. But I gotta preserve my lung function. Hopefully this tube will leak less.
I am very grateful for my awesome support system. Doctors who will go the extra mile for me. A friend who will jump in and help. And an incredible family with a super devoted Dad.
Oh, we got the lifeflight bill from here to ucsf- $30,000!!! No idea if insurance pays...
Thanks for checking in. Taking it day by day.
Christamae
Sunday, April 15, 2012 5:21 PM CDT Sorry it's been so long. To tell the truth I have had many days of just feeling gross and I spent many hours working on an Easter project.
I'll start with Easter. We did have fun buying Easter outfits for the girls. We had a nice visit with my brother, his fiance, and my little twin baby nieces. The girls are adorable and growing fast. It's always nice to see my brother.
Grandma has been spending a lot of time away with the sick relative. This puts even more of a toll on dad as he now must contend with household chores and cover the care she gives Mom and Danielle. We are all trying to exercise the spirit of patience and understanding.
My g-tube has been very leaky. Most days we are having to dress it twice (after it's leaked all over me). Unfortunately the dressing we use, Aquacell, is expensive and insurance doesn't pay.
Many people in my family feel run down and/or overwhelmed. My Aunt (cancer), Grandma (sick), Mom (disease progression), Dad, my brother (lost job. Prayers are appreciated for all.
I will add my Easter project now. It's selections from Matthew, Mark, Luke, and John from the intercessory prayer to His ressurected appearance to the apostles.
1 These words spake Jesus, and lifted up his eyes to heaven, and said, Father, the hour is come; glorify thy Son, that thy Son also may glorify thee: 2 As thou hast given him power over all flesh, that he should give eternal life to as many as thou hast given him. 3 And this is life eternal, that they might know thee the only true God, and Jesus Christ, whom thou hast sent. 4 I have glorified thee on the earth: I have finished the work which thou gavest me to do. 5 And now, O Father, glorify thou me with thine own self with the glory which I had with thee before the world was. 6 I have manifested thy name unto the men which thou gavest me out of the world: thine they were, and thou gavest them me; and they have kept thy word. 7 Now they have known that all things whatsoever thou hast given me are of thee. 8 For I have given unto them the words which thou gavest me; and they have received them, and have known surely that I came out from thee, and they have believed that thou didst send me. 9 I pray for them: I pray not for the world, but for them which thou hast given me; for they are thine. 10 And all mine are thine, and thine are mine; and I am glorified in them. 11 And now I am no more in the world, but these are in the world, and I come to thee. Holy Father, keep through thine own name those whom thou hast given me, that they may be one, as we are. 12 While I was with them in the world, I kept them in thy name: those that thou gavest me I have kept, and none of them is lost, but the son of perdition; that the scripture might be fulfilled. 13 And now come I to thee; and these things I speak in the world, that they might have my joy fulfilled in themselves. 14 I have given them thy word; and the world hath hated them, because they are not of the world, even as I am not of the world. 15 I pray not that thou shouldest take them out of the world, but that thou shouldest keep them from the evil. 16 They are not of the world, even as I am not of the world. 17 Sanctify them through thy truth: thy word is truth. 18 As thou hast sent me into the world, even so have I also sent them into the world. 19 And for their sakes I sanctify myself, that they also might be sanctified through the truth. 20 Neither pray I for these alone, but for them also which shall believe on me through their word; 21 That they all may be one; as thou, Father, art in me, and I in thee, that they also may be one in us: that the world may believe that thou hast sent me. 22 And the glory which thou gavest me I have given them; that they may be one, even as we are one: 23 I in them, and thou in me, that they may be made perfect in one; and that the world may know that thou hast sent me, and hast loved them, as thou hast loved me. 24 Father, I will that they also, whom thou hast given me, be with me where I am; that they may behold my glory, which thou hast given me: for thou lovedst me before the foundation of the world. 25 O righteous Father, the world hath not known thee: but I have known thee, and these have known that thou hast sent me. 26 And I have declared unto them thy name, and will declare it: that the love wherewith thou hast loved me may be in them, and I in them. (John 17)
3 And being in Bethany in the house of Simon the leper, as he sat at meat, there came a woman having an alabaster box of ointment of spikenard very precious; and she brake the box, and poured it on his head. 4 And there were some that had indignation within themselves, and said, Why was this waste of the ointment made? 5 For it might have been sold for more than three hundred pence, and have been given to the poor. And they murmured against her. 6 And Jesus said, Let her alone; why trouble ye her? she hath wrought a good work on me. 7 For ye have the poor with you always, and whensoever ye will ye may do them good: but me ye have not always. 8 She hath done what she could: she is come aforehand to anoint my body to the burying. Mark 14 3-8
18 And he said, Go into the city to such a man, and say unto him, The Master saith, My time is at hand; I will keep the passover at thy house with my disciples. Matthew 26: 18 13 And he sendeth forth two of his disciples, and saith unto them, Go ye into the city, and there shall meet you a man bearing a pitcher of water: follow him. 14 And wheresoever he shall go in, say ye to the goodman of the house, The Master saith, Where is the guestchamber, where I shall eat the passover with my disciples? 15 And he will shew you a large upper room furnished and prepared: there make ready for us. 16 And his disciples went forth, and came into the city, and found as he had said unto them: and they made ready the passover. 17 And in the evening he cometh with the twelve. Mark 14: 13-17 14 And when the hour was come, he sat down, and the twelve apostles with him. 15 And he said unto them, With desire I have desired to eat this passover with you before I suffer: 16 For I say unto you, I will not any more eat thereof, until it be fulfilled in the kingdom of God. 17 And he took the cup, and gave thanks, and said, Take this, and divide it among yourselves: 18 For I say unto you, I will not drink of the fruit of the vine, until the kingdom of God shall come. 19 And he took bread, and gave thanks, and brake it, and gave unto them, saying, This is my body which is given for you: this do in remembrance of me. 20 Likewise also the cup after supper, saying, This cup is the new testament in my blood, which is shed for you. Luke 22: 14-20 24 And there was also a strife among them, which of them should be accounted the greatest. 25 And he said unto them, The kings of the Gentiles exercise lordship over them; and they that exercise authority upon them are called benefactors. 26 But ye shall not be so: but he that is greatest among you, let him be as the younger; and he that is chief, as he that doth serve. 27 For whether is greater, he that sitteth at meat, or he that serveth? is not he that sitteth at meat? but I am among you as he that serveth. 28 Ye are they which have continued with me in my temptations. 29 And I appoint unto you a kingdom, as my Father hath appointed unto me; 30 That ye may eat and drink at my table in my kingdom, and sit on thrones judging the twelve tribes of Israel. 31 And the Lord said, Simon, Simon, behold, Satan hath desired to have you, that he may sift you as wheat: 32 But I have prayed for thee, that thy faith fail not: and when thou art converted, strengthen thy brethren. 33 And he said unto him, Lord, I am ready to go with thee, both into prison, and to death. 34 And he said, I tell thee, Peter, the cock shall not crow this day, before that thou shalt thrice deny that thou knowest me Luke 22: 24-34 Then cometh Jesus with them unto a place called Gethsemane, and saith unto the disciples, Sit ye here, while I go and pray yonder. 37 And he took with him Peter and the two sons of Zebedee, and began to be sorrowful and very heavy. 38 Then saith he unto them, My soul is exceeding sorrowful, even unto death: tarry ye here, and watch with me. 39 And he went a little further, and fell on his face, and prayed, saying matthew 26:36-39 36 …Abba, Father, all things are possible unto thee;(mark 14:36) O my Father, if it be possible, let this cup pass from me: nevertheless not as I will, but as thou wilt. (matthew 26:39) 43 And there appeared an angel unto him from heaven, strengthening him. 44 And being in an agony he prayed more earnestly: and his sweat was as it were great drops of blood falling down to the ground. (Luke 22:43-44) And he cometh unto the disciples, and findeth them asleep, and saith unto Peter, What, could ye not watch with me one hour? 41 Watch and pray, that ye enter not into temptation: the spirit indeed is willing, but the flesh is weak. 42 He went away again the second time, and prayed, saying, O my Father, if this cup may not pass away from me, except I drink it, thy will be done. 43 And he came and found them asleep again: for their eyes were heavy. 44 And he left them, and went away again, and prayed the third time, saying the same words. 45 Then cometh he to his disciples, and saith unto them, Sleep on now, and take your rest: behold, the hour is at hand, and the Son of man is betrayed into the hands of sinners. 46 Rise, let us be going: behold, he is at hand that doth betray me And while he yet spake, lo, Judas, one of the twelve, came, and with him a great multitude with swords and staves, from the chief priests and elders of the people. 48 Now he that betrayed him gave them a sign, saying, Whomsoever I shall kiss, that same is he: hold him fast. 49 And forthwith he came to Jesus, and said, Hail, master; and kissed him. . (Matthew 26:40-49) 48 But Jesus said unto him, Judas, betrayest thou the Son of man with a kiss? (Luke 22:48) Judas then, having received a band of men and officers from the chief priests and Pharisees, cometh thither with lanterns and torches and weapons. 4 Jesus therefore, knowing all things that should come upon him, went forth, and said unto them, Whom seek ye? 5 They answered him, Jesus of Nazareth. Jesus saith unto them, I am he. And Judas also, which betrayed him, stood with them. 6 As soon then as he had said unto them, I am he, they went backward, and fell to the ground. 7 Then asked he them again, Whom seek ye? And they said, Jesus of Nazareth. 8 Jesus answered, I have told you that I am he: if therefore ye seek me, let these go their way: 9 That the saying might be fulfilled, which he spake, Of them which thou gavest me have I lost none. 10 Then Simon Peter having a sword drew it, and smote the high priest’s servant, and cut off his right ear. The servant’s name was Malchus. 11 Then said Jesus unto Peter, Put up thy sword into the sheath: the cup which my Father hath given me, shall I not drink it? (John 18:3-11) 53 Thinkest thou that I cannot now pray to my Father, and he shall presently give me more than twelve legions of angels? 54 But how then shall the scriptures be fulfilled, that thus it must be? 55 In that same hour said Jesus to the multitudes, Are ye come out as against a thief with swords and staves for to take me? I sat daily with you teaching in the temple, and ye laid no hold on me. 56 But all this was done, that the scriptures of the prophets might be fulfilled. Then all the disciples forsook him, and fled. And they that had laid hold on Jesus led him away to aCaiaphas the high priest, where the scribes and the elders were assembled. 58 But Peter followed him afar off unto the high priest’s palace, and went in, and sat with the servants, to see the end. 55 And when they had kindled a fire in the midst of the hall, and were set down together, Peter sat down among them. 56 But a certain maid beheld him as he sat by the fire, and earnestly looked upon him, and said, This man was also with him. 57 And he denied him, saying, Woman, I know him not. 58 And after a little while another saw him, and said, Thou art also of them. And Peter said, Man, I am not. 59 And about the space of one hour after another confidently affirmed, saying, Of a truth this fellow also was with him: for he is a Galilæan. 60 And Peter said, Man, I know not what thou sayest. And immediately, while he yet spake, the cock crew. 61 And the aLord turned, and looked upon Peter. And Peter remembered the word of the Lord, how he had said unto him, Before the cock crow, thou shalt deny me thrice. 62 And Peter went out, and wept bitterly. (Luke 22: 55-62) 55 And the chief priests and all the council sought for witness against Jesus to put him to death; and found none. 56 For many bare false witness against him, but their witness agreed not together. 57 And there arose certain, and bare false witness against him, saying, 58 We heard him say, I will destroy this temple that is made with hands, and within three days I will build another made without hands. 59 But neither so did their witness agree together. 60 And the high priest stood up in the midst, and asked Jesus, saying, Answerest thou nothing? what is it which these witness against thee? 61 But he held his peace, and answered nothing. Again the high priest asked him, and said unto him, Art thou the Christ, the Son of the Blessed? 62 And Jesus said, I am: and ye shall see the Son of man sitting on the right hand of power, and coming in the clouds of heaven. 63 Then the high priest rent his clothes, and saith, What need we any further witnesses? 64 Ye have heard the blasphemy: what think ye? And they all condemned him to be guilty of death. 65 And some began to spit on him, and to cover his face, and to buffet him, and to say unto him, Prophesy: and the servants did strike him with the palms of their hands. 59 Now the chief priests, and elders, and all the council, sought false witness against Jesus, to put him to death; 60 But found none: yea, though many false witnesses came, yet found they none. At the last came two false witnesses, 61 And said, This fellow said, I am able to destroy the temple of God, and to build it in three days. 62 And the high priest arose, and said unto him, Answerest thou nothing? what is it which these witness against thee? 63 But Jesus held his peace. And the high priest answered and said unto him, I adjure thee by the living God, that thou tell us whether thou be the Christ, the Son of God. 64 Jesus saith unto him, Thou hast said: nevertheless I say unto you, Hereafter shall ye see the Son of man sitting on the right hand of power, and coming in the clouds of heaven. 65 Then the high priest rent his clothes, saying, He hath spoken blasphemy; what further need have we of witnesses? behold, now ye have heard his blasphemy. 66 What think ye? They answered and said, He is guilty of death. 67 Then did they spit in his face, and buffeted him; and others smote him with the palms of their hands, 68 Saying, Prophesy unto us, thou Christ, Who is he that smote thee? (matthew 26:53-68) 55 And the chief priests and all the council sought for witness against Jesus to put him to death; and found none. 56 For many bare false witness against him, but their witness agreed not together. 57 And there arose certain, and bare false witness against him, saying, 58 We heard him say, I will destroy this temple that is made with hands, and within three days I will build another made without hands. 59 But neither so did their witness agree together. 60 And the high priest stood up in the midst, and asked Jesus, saying, Answerest thou nothing? what is it which these witness against thee? 61 But he held his peace, and answered nothing. Again the high priest asked him, and said unto him, Art thou the Christ, the Son of the Blessed? 62 And Jesus said, I am: and ye shall see the Son of man sitting on the right hand of power, and coming in the clouds of heaven. 63 Then the high priest rent his clothes, and saith, What need we any further witnesses? 64 Ye have heard the blasphemy: what think ye? And they all condemned him to be guilty of death. 65 And some began to spit on him, and to cover his face, and to buffet him, and to say unto him, Prophesy: and the servants did strike him with the palms of their hands. (mark 14: 55-65) 28 Then led they Jesus from Caiaphas unto the hall of judgment: and it was early; and they themselves went not into the judgment hall, lest they should be defiled; but that they might eat the passover. 29 Pilate then went out unto them, and said, What accusation bring ye against this man? 30 They answered and said unto him, If he were not a malefactor, we would not have delivered him up unto thee. 31 Then said Pilate unto them, Take ye him, and judge him according to your law. The Jews therefore said unto him, It is not lawful for us to put any man to death: 32 That the saying of Jesus might be fulfilled, which he spake, signifying what death he should die. (john 18: 28-32) When the morning was come, all the chief priests and elders of the people took counsel against Jesus to put him to death: 2 And when they had bound him, they led him away, and delivered him to Pontius Pilate the governor. 3 Then Judas, which had betrayed him, when he saw that he was condemned, repented himself, and brought again the thirty pieces of silver to the chief priests and elders, 4 Saying, I have sinned in that I have betrayed the innocent blood. And they said, What is that to us? see thou to that. 5 And he cast down the pieces of silver in the temple, and departed, and went and hanged himself. 6 And the chief priests took the silver pieces, and said, It is not lawful for to put them into the treasury, because it is the price of blood. 7 And they took counsel, and bought with them the potter’s field, to bury strangers in. 8 Wherefore that field was called, The field of blood, unto this day. 9 Then was fulfilled that which was spoken by Jeremy the prophet, saying, And they took the thirty pieces of silver, the price of him that was valued, whom they of the children of Israel did value; 10 And gave them for the potter’s field, as the Lord appointed me. (Matthew 27: 1-10) And straightway in the morning the chief priests held a consultation with the elders and scribes and the whole council, and bound Jesus, and carried him away, and delivered him to Pilate. (mark 18:15:1) Then Pilate entered into the judgment hall again, and called Jesus, and said unto him, Art thou the King of the Jews? 34 Jesus answered him, Sayest thou this thing of thyself, or did others tell it thee of me? 35 Pilate answered, Am I a Jew? Thine own nation and the chief priests have delivered thee unto me: what hast thou done? 36 Jesus answered, My kingdom is not of this world: if my kingdom were of this world, then would my servants fight, that I should not be delivered to the Jews: but now is my kingdom not from hence. 37 Pilate therefore said unto him, Art thou a king then? Jesus answered, Thou sayest that I am a king. To this end was I born, and for this cause came I into the world, that I should bear witness unto the truth. Every one that is of the truth heareth my voice. 38 Pilate saith unto him, What is truth? And when he had said this, he went out again unto the Jews, and saith unto them, I find in him no fault at all. (John: 18: 33-38) Now at that feast the governor was wont to release unto the people a prisoner, whom they would. 16 And they had then a notable prisoner, called Barabbas. 17 Therefore when they were gathered together, Pilate said unto them, Whom will ye that I release unto you? Barabbas, or Jesus which is called Christ? 18 For he knew that for envy they had delivered him. 19 When he was set down on the judgment seat, his wife sent unto him, saying, Have thou nothing to do with that just man: for I have suffered many things this day in a dream because of him. 20 But the chief priests and elders persuaded the multitude that they should ask Barabbas, and destroy Jesus. 21 The governor answered and said unto them, Whether of the twain will ye that I release unto you? They said, Barabbas. 22 Pilate saith unto them, What shall I do then with Jesus which is called Christ? They all say unto him, Let him be crucified. 23 And the governor said, Why, what evil hath he done? But they cried out the more, saying, Let him be crucified. (matthew 27: 15-23) And Pilate, when he had called together the chief priests and the rulers and the people, 14 Said unto them, Ye have brought this man unto me, as one that perverteth the people: and, behold, I, having examined him before you, have found no fault in this man touching those things whereof ye accuse him: 15 No, nor yet Herod: for I sent you to him; and, lo, nothing worthy of death is done unto him. 16 I will therefore chastise him, and release him. 17 (For of necessity he must release one unto them at the feast.) 18 And they cried out all at once, saying, Away with this man, and release unto us Barabbas: 19 (Who for a certain sedition made in the city, and for murder, was cast into prison.) 20 Pilate therefore, willing to release Jesus, spake again to them. 21 But they cried, saying, Crucify him, crucify him. 22 And he said unto them the third time, Why, what evil hath he done? I have found no cause of death in him: I will therefore chastise him, and let him go. 23 And they were instant with loud voices, requiring that he might be crucified. And the voices of them and of the chief priests prevailed. 24 And Pilate gave sentence that it should be as they required. (Luke 23: 13-24) 24 When Pilate saw that he could prevail nothing, but that rather a tumult was made, he took water, and washed his hands before the multitude, saying, I am innocent of the blood of this just person: see ye to it. 25 Then answered all the people, and said, His blood be on us, and on our children. 26 Then released he Barabbas unto them: and when he had scourged Jesus, he delivered him to be crucified. (matthew 27: 24-26) Then the soldiers of the governor took Jesus into the common hall, and gathered unto him the whole band of soldiers. 28 And they stripped him, and put on him a scarlet robe. 29 And when they had platted a crown of thorns, they put it upon his head, and a reed in his right hand: and they bowed the knee before him, and mocked him, saying, Hail, King of the Jews! 30 And they spit upon him, and took the reed, and smote him on the head. 31 And after that they had mocked him, they took the robe off from him, and put his own raiment on him, and led him away to crucify him. (Matthew 27: 27-31) 26 And as they led him away, they laid hold upon one Simon, a Cyrenian, coming out of the country, and on him they laid the cross, that he might bear it after Jesus. 27 And there followed him a great company of people, and of women, which also bewailed and lamented him. 28 But Jesus turning unto them said, Daughters of Jerusalem, weep not for me, but weep for yourselves, and for your children. 29 For, behold, the days are coming, in the which they shall say, Blessed are the barren, and the wombs that never bare, and the paps which never gave suck. 30 Then shall they begin to say to the mountains, Fall on us; and to the hills, Cover us. 31 For if they do these things in a green tree, what shall be done in the dry? 32 And there were also two other, malefactors, led with him to be put to death 34 Then said Jesus, Father, forgive them; for they know not what they do. (Luke 23:26-32&34) 39 And one of the malefactors which were hanged railed on him, saying, If thou be Christ, save thyself and us. 40 But the other answering rebuked him, saying, Dost not thou fear God, seeing thou art in the same condemnation? 41 And we indeed justly; for we receive the due reward of our deeds: but this man hath done nothing amiss. 42 And he said unto Jesus, Lord, remember me when thou comest into thy kingdom. 43 And Jesus said unto him, Verily I say unto thee, To day shalt thou be with me in paradise. (Luke 23: 39-43) 33 And when they were come unto a place called Golgotha, that is to say, a place of a skull, 34 They gave him vinegar to drink mingled with gall: and when he had tasted thereof, he would not drink. 35 And they crucified him, and parted his garments, casting lots: that it might be fulfilled which was spoken by the prophet, They parted my garments among them, and upon my vesture did they cast lots. 36 And sitting down they watched him there; 37 And set up over his head his accusation written, THIS IS JESUS THE KING OF THE JEWS. 39 And they that passed by reviled him, wagging their heads, 40 And saying, Thou that destroyest the temple, and buildest it in three days, save thyself. If thou be the Son of God, come down from the cross. 41 Likewise also the chief priests mocking him, with the scribes and elders, said, 42 He saved others; himself he cannot save. If he be the King of Israel, let him now come down from the cross, and we will believe him. 43 He trusted in God; let him deliver him now, if he will have him: for he said, I am the Son of God. 44 The thieves also, which were crucified with him, cast the same in his teeth. 45 Now from the sixth hour there was darkness over all the land unto the ninth hour. 46 And about the ninth hour Jesus cried with a loud voice, saying, Eli, Eli, lama sabachthani? that is to say, My God, my God, why hast thou forsaken me? 47 Some of them that stood there, when they heard that, said, This man calleth for Elias. 48 And straightway one of them ran, and took a spunge, and filled it with vinegar, and put it on a reed, and gave him to drink. 49 The rest said, Let be, let us see whether Elias will come to save him. (Matthew 27-33-49) Now there stood by the cross of Jesus his mother, and his mother’s sister, Mary the wife of Cleophas, and Mary Magdalene. 26 When Jesus therefore saw his mother, and the disciple standing by, whom he loved, he saith unto his mother, Woman, behold thy son! 27 Then saith he to the disciple, Behold thy mother! And from that hour that disciple took her unto his own home. (John 19-25-27) 30 When Jesus therefore had received the vinegar, he said, It is finished: and he bowed his head…And when Jesus had cried with a loud voice, he said, Father, into thy hands I commend my spirit: and having said thus, he gave up the ghost. (John 19:30 & Luke 23:46) 51 And, behold, the veil of the temple was rent in twain from the top to the bottom; and the earth did quake, and the rocks rent; 52 And the graves were opened; and many bodies of the saints which slept arose, 53 And came out of the graves after his resurrection, and went into the holy city, and appeared unto many. 54 Now when the centurion, and they that were with him, watching Jesus, saw the earthquake, and those things that were done, they feared greatly, saying, Truly this was the Son of God. And many women were there beholding afar off, which followed Jesus from Galilee, ministering unto him: 56 Among which was Mary Magdalene, and Mary the mother of James and Joses, and the mother of Zebedee’s children. 57 When the even was come, there came a rich man of Arimathæa, named Joseph, who also himself was Jesus’ disciple: 58 He went to Pilate, and begged the body of Jesus. Then Pilate commanded the body to be delivered. 59 And when Joseph had taken the body, he wrapped it in a clean linen cloth, 60 And laid it in his own new tomb, which he had hewn out in the rock: and he rolled a great stone to the door of the sepulchre, and departed. 61 And there was Mary Magdalene, and the other Mary, sitting over against the sepulchre. 62 Now the next day, that followed the day of the preparation, the chief priests and Pharisees came together unto Pilate, 63 Saying, Sir, we remember that that deceiver said, while he was yet alive, After three days I will rise again. 64 Command therefore that the sepulchre be made sure until the third day, lest his disciples come by night, and steal him away, and say unto the people, He is risen from the dead: so the last error shall be worse than the first. 65 Pilate said unto them, Ye have a watch: go your way, make it as sure as ye can. 66 So they went, and made the sepulchre sure, sealing the stone, and setting a watch. (matthew 27: 51-66) The first day of the week cometh Mary Magdalene early, when it was yet dark, 47 Now when the centurion saw what was done, he glorified God, saying, Certainly this was a righteous man. 48 And all the people that came together to that sight, beholding the things which were done, smote their breasts, and returned. (Luke 23:47-48) The Jews therefore, because it was the preparation, that the bodies should not remain upon the cross on the sabbath day, (for that sabbath day was an high day,) besought Pilate that their legs might be broken, and that they might be taken away. 32 Then came the soldiers, and brake the legs of the first, and of the other which was crucified with him. 33 But when they came to Jesus, and saw that he was dead already, they brake not his legs: 34 But one of the soldiers with a spear pierced his side, and forthwith came there out blood and water. 35 And he that saw it bare record, and his record is true: and he knoweth that he saith true, that ye might believe. 36 For these things were done, that the scripture should be fulfilled, A bone of him shall not be broken. 37 And again another scripture saith, They shall look on him whom they pierced. 38 And after this Joseph of Arimathæa, being a disciple of Jesus, but secretly for fear of the Jews, besought Pilate that he might take away the body of Jesus: and Pilate gave him leave. He came therefore, and took the body of Jesus. 39 And there came also Nicodemus, which at the first came to Jesus by night, and brought a mixture of myrrh and aloes, about an hundred pound weight. 40 Then took they the body of Jesus, and wound it in linen clothes with the spices, as the manner of the Jews is to bury. 41 Now in the place where he was crucified there was a garden; and in the garden a new sepulchre, wherein was never man yet laid. 42 There laid they Jesus therefore because of the Jews’ preparation day; for the sepulchre was nigh at hand. (John 19: 31-42) unto the sepulchre, and seeth the stone taken away from the sepulchre. 2 Then she runneth, and cometh to Simon Peter, and to the other disciple, whom Jesus loved, and saith unto them, They have taken away the Lord out of the sepulchre, and we know not where they have laid him. 3 Peter therefore went forth, and that other disciple, and came to the sepulchre. 4 So they ran both together: and the other disciple did outrun Peter, and came first to the sepulchre. 5 And he stooping down, and looking in, saw the linen clothes lying; yet went he not in. 6 Then cometh Simon Peter following him, and went into the sepulchre, and seeth the linen clothes lie, 7 And the napkin, that was about his head, not lying with the linen clothes, but wrapped together in a place by itself. 8 Then went in also that other disciple, which came first to the sepulchre, and he saw, and believed. 9 For as yet they knew not the scripture, that he must rise again from the dead. 10 Then the disciples went away again unto their own home. 11 But Mary stood without at the sepulchre weeping: and as she wept, she stooped down, and looked into the sepulchre, 12 And seeth two angels in white sitting, the one at the head, and the other at the feet, where the body of Jesus had lain. 13 And they say unto her, Woman, why weepest thou? She saith unto them, Because they have taken away my Lord, and I know not where they have laid him. 14 And when she had thus said, she turned herself back, and saw Jesus standing, and knew not that it was Jesus. 15 Jesus saith unto her, Woman, why weepest thou? whom seekest thou? She, supposing him to be the gardener, saith unto him, Sir, if thou have borne him hence, tell me where thou hast laid him, and I will take him away. 16 Jesus saith unto her, Mary. She turned herself, and saith unto him, Rabboni; which is to say, Master. 17 Jesus saith unto her, Touch me not; for I am not yet ascended to my Father: but go to my brethren, and say unto them, I ascend unto my Father, and your Father; and to my God, and your God. (John 20:1-17) In the end of the sabbath, as it began to dawn toward the first day of the week, came Mary Magdalene and the other Mary to see the sepulchre. 2 And, behold, there was a great earthquake: for the angel of the Lord descended from heaven, and came and rolled back the stone from the door, and sat upon it. 3 His countenance was like lightning, and his raiment white as snow: 4 And for fear of him the keepers did shake, and became as dead men. 5 And the angel answered and said unto the women, Fear not ye: for I know that ye seek Jesus, which was crucified. 6 He is not here: for he is risen, as he said. Come, see the place where the Lord lay. 7 And go quickly, and tell his disciples that he is risen from the dead; and, behold, he goeth before you into Galilee; there shall ye see him: lo, I have told you. 8 And they departed quickly from the sepulchre with fear and great joy; and did run to bring his disciples word. 9 And as they went to tell his disciples, behold, Jesus met them, saying, All hail. And they came and held him by the feet, and worshipped him. 10 Then said Jesus unto them, Be not afraid: go tell my brethren that they go into Galilee, and there shall they see me. 11 Now when they were going, behold, some of the watch came into the city, and shewed unto the chief priests all the things that were done. 12 And when they were assembled with the elders, and had taken counsel, they gave large money unto the soldiers, 13 Saying, Say ye, His disciples came by night, and stole him away while we slept. 14 And if this come to the governor’s ears, we will persuade him, and secure you. 15 So they took the money, and did as they were taught: and this saying is commonly reported among the Jews until this day. (Matthew 28: 1-15) Now upon the first day of the week, very early in the morning, they came unto the sepulchre, bringing the spices which they had prepared, and certain others with them. 2 And they found the stone rolled away from the sepulchre. 3 And they entered in, and found not the body of the Lord Jesus. 4 And it came to pass, as they were much perplexed thereabout, behold, two men stood by them in shining garments: 5 And as they were afraid, and bowed down their faces to the earth, they said unto them, Why seek ye the living among the dead? 6 He is not here, but is risen: remember how he spake unto you when he was yet in Galilee, 7 Saying, The Son of man must be delivered into the hands of sinful men, and be crucified, and the third day rise again. 8 And they remembered his words, 9 And returned from the sepulchre, and told all these things unto the eleven, and to all the rest. 10 It was Mary Magdalene, and Joanna, and Mary the mother of James, and other women that were with them, which told these things unto the apostles. 11 And their words seemed to them as idle tales, and they believed them not. 12 Then arose Peter, and ran unto the sepulchre; and stooping down, he beheld the linen clothes laid by themselves, and departed, wondering in himself at that which was come to pass. 13 And, behold, two of them went that same day to a village called Emmaus, which was from Jerusalem about threescore furlongs. 14 And they talked together of all these things which had happened. 15 And it came to pass, that, while they communed together and reasoned, Jesus himself drew near, and went with them. 16 But their eyes were holden that they should not know him. 17 And he said unto them, What manner of communications are these that ye have one to another, as ye walk, and are sad? 18 And the one of them, whose name was Cleopas, answering said unto him, Art thou only a stranger in Jerusalem, and hast not known the things which are come to pass there in these days? 19 And he said unto them, What things? And they said unto him, Concerning Jesus of Nazareth, which was a prophet mighty in deed and word before God and all the people: 20 And how the chief priests and our rulers delivered him to be condemned to death, and have crucified him. 21 But we trusted that it had been he which should have redeemed Israel: and beside all this, to day is the third day since these things were done. 22 Yea, and certain women also of our company made us astonished, which were early at the sepulchre; 23 And when they found not his body, they came, saying, that they had also seen a vision of angels, which said that he was alive. 24 And certain of them which were with us went to the sepulchre, and found it even so as the women had said: but him they saw not. 25 Then he said unto them, O fools, and slow of heart to believe all that the prophets have spoken: 26 Ought not Christ to have suffered these things, and to enter into his glory? 27 And beginning at Moses and all the prophets, he expounded unto them in all the scriptures the things concerning himself. 28 And they drew nigh unto the village, whither they went: and he made as though he would have gone further. 29 But they constrained him, saying, Abide with us: for it is toward evening, and the day is far spent. And he went in to tarry with them. 30 And it came to pass, as he sat at meat with them, he took bread, and blessed it, and brake, and gave to them. 31 And their eyes were opened, and they knew him; and he vanished out of their sight. 32 And they said one to another, Did not our heart burn within us, while he talked with us by the way, and while he opened to us the scriptures? 33 And they rose up the same hour, and returned to Jerusalem, and found the eleven gathered together, and them that were with them, 34 Saying, The Lord is risen indeed, and hath appeared to Simon. 35 And they told what things were done in the way, and how he was known of them in breaking of bread. 36 And as they thus spake, Jesus himself stood in the midst of them, and saith unto them, Peace be unto you. 37 But they were terrified and affrighted, and supposed that they had seen a spirit. 38 And he said unto them, Why are ye troubled? and why do thoughts arise in your hearts? 39 Behold my hands and my feet, that it is I myself: handle me, and see; for a spirit hath not flesh and bones, as ye see me have. 40 And when he had thus spoken, he shewed them his hands and his feet. Then the same day at evening, being the first day of the week, when the doors were shut where the disciples were assembled for fear of the Jews, came Jesus and stood in the midst, and saith unto them, Peace be unto you. 20 And when he had so said, he shewed unto them his hands and his side. Then were the disciples glad, when they saw the Lord. 21 Then said Jesus to them again, Peace be unto you: as my Father hath sent me, even so send I you. 22 And when he had said this, he breathed on them, and saith unto them, Receive ye the Holy Ghost: 23 Whosesoever sins ye remit, they are remitted unto them; and whosesoever sins ye retain, they are retained. 24 But Thomas, one of the twelve, called Didymus, was not with them when Jesus came. 25 The other disciples therefore said unto him, We have seen the Lord. But he said unto them, Except I shall see in his hands the print of the nails, and put my finger into the print of the nails, and thrust my hand into his side, I will not believe. 26 And after eight days again his disciples were within, and Thomas with them: then came Jesus, the doors being shut, and stood in the midst, and said, Peace be unto you. 27 Then saith he to Thomas, Reach hither thy finger, and behold my hands; and reach hither thy hand, and thrust it into my side: and be not faithless, but believing. 28 And Thomas answered and said unto him, My Lord and my God. 29 Jesus saith unto him, Thomas, because thou hast seen me, thou hast believed: blessed are they that have not seen, and yet have believed. 30 And many other signs truly did Jesus in the presence of his disciples, which are not written in this book: 31 But these are written, that ye might believe that Jesus is the Christ, the Son of God; and that believing ye might have life through his name. (john 20: 20-31) 41 And while they yet believed not for joy, and wondered, he said unto them, Have ye here any meat? 42 And they gave him a piece of a broiled fish, and of an honeycomb. 43 And he took it, and did eat before them. 44 And he said unto them, These are the words which I spake unto you, while I was yet with you, that all things must be fulfilled, which were written in the law of Moses, and in the prophets, and in the psalms, concerning me. 45 Then opened he their understanding, that they might understand the scriptures, 46 And said unto them, Thus it is written, and thus it behooved Christ to suffer, and to rise from the dead the third day: 47 And that repentance and remission of sins should be preached in his name among all nations, beginning at Jerusalem. 48 And ye are witnesses of these things. 49 And, behold, I send the promise of my Father upon you: but tarry ye in the city of Jerusalem, until ye be endued with power from on high. 50 And he led them out as far as to Bethany, and he lifted up his hands, and blessed them. 51 And it came to pass, while he blessed them, he was parted from them, and carried up into heaven. 52 And they worshipped him, and returned to Jerusalem with great joy: 53 And were continually in the temple, praising and blessing God. Amen. (Luke 24: 41-54) Then the eleven disciples went away into Galilee, into a mountain where Jesus had appointed them. 17 And when they saw him, they worshipped him: but some doubted. 18 And Jesus came and spake unto them, saying, All power is given unto me in heaven and in earth. 19 Go ye therefore, and teach all nations, baptizing them in the name of the Father, and of the Son, and of the Holy Ghost: 20 Teaching them to observe all things whatsoever I have commanded you: and, lo, I am with you always, even unto the end of the world. Amen. (matthew 28 16-20) And he said unto them, Go ye into all the world, and preach the gospel to every creature. 16 He that believeth and is baptized shall be saved; but he that believeth not shall be damned. 17 And these signs shall follow them that believe; In my name shall they cast out devils; they shall speak with new tongues; 18 They shall take up serpents; and if they drink any deadly thing, it shall not hurt them: they shall lay hands on the sick, and they shall recover. 19 So then after the Lord had spoken unto them, he was received up into heaven, and sat on the right hand of God. 20 And they went forth, and preached every where, the Lord working with them, and confirming the word with signs following. Amen. (Mark 16: 15-20)
Christamae
Sunday, March 25, 2012 7:18 PM CDT Another tough week.
We received some devastating news-my aunt whose lung cancer was in an unheard of remission like state cancer has returned and metastasized to her adrenal glands and brain. The prognosis is poor and she is devastated as is Grandma. I would appreciate prayers for healing, comfort, peace, and understanding.
I have so much respect for Grandma. She's had a hard life. Growing up her parents were alcoholics and she lived in poverty. One child has Muscular Dystrophy, another is schizophrenic and doesn't believe she is his mother, and now this. Grandma herself has her own health issues including going blind from wet macular degeneration. Yet, her life has been one of charity and tremendous faith and testimony in God.
Another person I worry about is Dad. The poor guy is overwhelmed and constantly exhausted. I know his health and happiness suffers. I worry about his ability to maintain this lifestyle. I constantly pray for God to support and sustain him.
One thing that brings us happiness daily are our dogs. Toby is so affectionate. He will just cuddle up and lay his head on my shoulder and I love his kisses. I try to focus on the little joys.
I am excited to be entered in a pin trade. I received some great pins from my last trade. I collect Disney pins. Another bit of happiness to focus on.
Right now I feel kinda like I am just drifting through life. I would love ideas on how I could serve or be more productive.
Thank you for your support and messages. They brighten my day...Trying to "accentuate the positive"
Sunday, March 25, 2012 5:25 PM CDT Another tough week.
We received some devastating news-my aunt whose lung cancer was in an unheard of remission like state cancer has returned and metastasized to her adrenal glands and brain. The prognosis is poor and she is devastated as is Grandma. I would appreciate prayers for healing, comfort, peace, and understanding.
I have so much respect for Grandma. She's had a hard life. Growing up her parents were alcoholics and she lived in poverty. One child has Muscular Dystrophy, another is schizophrenic and doesn't believe she is his mother, and now this. Grandma herself has her own health issues including going blind from wet macular degeneration. Yet, her life has been one of charity and tremendous faith and testimony in God.
Another person I worry about is Dad. The poor guy is overwhelmed and constantly exhausted. I know his health and happiness suffers. I worry about his ability to maintain this lifestyle. I constantly pray for God to support and sustain him.
One thing that brings us happiness daily are our dogs. Toby is so affectionate. He will just cuddle up and lay his head on my shoulder and I love his kisses. I try to focus on the little joys.
I am excited to be entered in a pin trade. I received some great pins from my last trade. I collect Disney pins. Another bit of happiness to focus on.
I do wonder what I am supposed to be doing-God’s wishes/plans for me. Right now I feel kinda like I am just drifting through life and all I do is take. I would love ideas on how I could serve or things I could do that are meaningful and productive.
Thanks for all your support. Your notes brighten my day.
Christamae
Sunday, March 18, 2012 2:56 PM CDT Sorry if I worried anyone. I have been mightily depressed. It just seems like my plans are for naught. I just drift through day to day, scheduling life around breathing treatments.
I try to be positive. I am so grateful for my knowledge of the Savior and the gospel. He is the light in my dark days. I am thankful for my devoted parents, technology, and this country.
I did finally get a nurse I like and who is really good. But Danielle’s awesome night nurse quit because she got “too close, nurse/patient boundary.” I worry about Dad a lot. He is always busy and never gets enough sleep…
Not much going on. I am reading good books through bookshare. Also dealing with nerve damage/fire pain in my legs from my seizure that makes it very hard to sleep. I need ideas on what I can do with my life-feel like I am giving back, feel productive.
I really appreciate my messages.
Wishing for a better week, Christamae
Sunday, February 5, 2012 5:06 PM CST well, let's see. as always ups & downs.
it was nice to see my cousin courtney & her daughter, River. I especially enjoyed playing the game scattergories. I like playing games. it's kinda strange seeing Courtney with a baby (she's married). She is about 6 years younger than me.
I am not sick right. Also happy to report that I am NOT in chronic or acute respiratory failure. When I die I really hope it doesn't involve my breathing, although medically that's most likely. Not being able to breathe is the worst. I know there is a life after death and that wonderful things wait for me there. I have no worries about death...more the process...
Well, moving right along-my new style gj tube is working about the same. sometimes it leaks, sometimes it doesn't. the good thing is that the fissure & irritated skin has healed. so the tube did its job. :)
Friday Danielle had a pulmonary appointment and afterwards dropped by the PICU to say hi. It was nice to be just a visitor.
I would love suggestions on how I can serve and ways to be more social. Sorta feel like I am just drifting through life encompassed by medical treatments.
Thanks for your support! :)
Sunday, January 22, 2012 2:15 PM CST Sorry it's been so long. I have been a bit down and struggling. Trying to figure out how to balance what I want to do with what I can do & try to figure out how to deal with a new problem (medical but embarrassing).
I am sick right now. I have been nauseas, achy, and had chills. My temp was on the rise, too. Fortunately I am starting to feel better. I am very grateful that I have medication available to help with my nausea.
A couple weeks ago my GJ-tube balloon popped. I was finally able to change the tube last Thursday. It definitely was not the best change but wasn't the worst either. A resident was performing the procedure under supervision. Allowing unlicensed doctors AKA: Residents is something you have to deal with when you are going to a teaching hospital. The new tube is not fitting well at all. The drain tube wasn't working and as a result my stomach secretions were leaking out all over my clothes. This morning it appears that my drain has started working so perhaps things will continue to improve.
A couple of weeks ago we had a real treat. My cousin Shayna came out to visit. We had a great time talking and playing games and just enjoying each other's company. Shayna has lived with me on and off for about 15 years and I feel kind of like she is an unofficial sister. It's always a treat to see her.
We had a real treat when my brother's daughters were born. Evee and Cora are doing well...and adorable. They are just precious. It was great to see them and enjoy their sweet spirits.
I am happy to report that I am doing better with falling asleep off the vent. This has resolved alot of conflict within the household. I think I have finally become at peace with using the vent more. I no longer have extreme anxiety everytime I put it on. It's still hard and I find myself watching the clock counting down the time until I should be able to take off the vent. I haven't fallen asleep for over a week and I hope this new trend continues.
Not too much has changed. Mostly just going through daily routines and trying to find ways to help others.
Christamae
Sunday, December 18, 2011 2:29 PM CST Not too much has been going on. Mainly the day to day health maintenance.
It is fun to watch the dogs interact and play together. They seem to get along well. It's nice to hold and cuddle with both of them. They've brought a little sunshine into our days.
My pneumonia seems to have cleared up. So far I have not noticed a decline in my breathing. I am hopeful that this pneumonia has not affected my breathing long term. For this I am very grateful.
I'm sorry if I offended anyone with my comment on the frustration of problems getting medication. Cystic fibrosis is a horrible disease and I am grateful that I don't have to deal with it. I was just expressing frustration about the inability to get needed medication.
Well, I had my television debut. check out my tv debut-http://dsc.discovery.com/videos/weed-wars-life-changing-cannabis.html. This is the clip of me from the show Weed Wars.
We have been enjoying our traditional Christmas shows. All the Christmas decorations are up and the tree is decorated and displayed in the corner. It's beginning to look alot like Christmas. I hope everyone has a blessed holiday. Thats about all the news I know. Thank you for your continued support and prayers.
Sunday, December 4, 2011 2:52 PM CST It's been an up and down week.
I missed Weed Wars. Our DVR system mysteriously erased all our recordings. I hope I am featured on a later episode so I can still see me. We also lost several Christmas specials. Fortunately they are on again later in the month.
On an upside, I finally got my hypertonic saline. The UCSF pharmacy filled it for us. I am afraid it came a bit too late. The x-ray I took last week showed pneumonia! I knew this would happen. I am worried about the antibiotic, too. It's related to the antibiotic Cipro which I have anafalaxis with. I just really hope I can clear this junk fast. I wish I could get the nebulized antibiotic TOBI. It always kicks my infections butt and clears junk out super well. But I don't have the 'right' disease (Cystic Fibrosis) for insurance to pay for this expensive drug. Sometimes I get so tired of not having the right code word when I have the exact same symptoms and problems. It's just medical politics. I hate pneumonia! Every time I get it I stress that this might be the one that makes me stuck on the vent. The hypertonic saline does seem to be doing it's job and I can still stay off the vent for substantial amounts of time so I am cautiously hopeful.
Now for the highlight of our week, an addition to the family. We decided to give Taco a friend and playmate to burn off some of that energy. We ended up choosing a male chihuahua/wire-haired terrier mix called Obi-Wan. He is the most adorable and affectionate puppy! We renamed him Toby and is just a snuggle buddy. We were surprised he was still there as the animal shelter said they had a slew of adoptions that morning. Turns out he had mistakenly been deleted from the website and no one saw him because he was recovering from neutering surgery. I can't help but think Toby was also chosen for us.
Well, there it is, the ups and downs of the week. Now to send that pneumonia packing!!!
Sunday, November 27, 2011 1:53 PM CST Sorry for the wait.
When I went to the doctor to investigate my arm, the lump was gone. So apparently it was just a muscle strain. In other medical happenings, the vent that was beeping constantly was switched out. The RT that did it was confused and started to take the wrong vent (the one on my wheelchair). Well, evidently she mixed up some lines because when I tried to put the vent on because I couldn’t breathe it didn’t work. Plus, Dad was gone! Luckily my nurse remembered what to do and bagged me until I caught my breath. Dad arrived shortly and discovered that the RT had mixed up some essential connections. Dad quickly restored the connections correctly. I am very grateful that my dad is such a great problem solver and can fix just about anything. I have slept better with the new vent-no more incessant beeping.
The baby shower was a success. Everyone seemed to have a good time. I am getting more excited for the arrival of the twins. I decided to write a poem. I haven’t been inspired enough to write a poem for awhile but this one came out pretty good. Cora and Evee
Two gifts from God Floating down from the skies Precious gifts Lights in your lives
Treat them well Treasure them too For Him above Chose them for you
Each ‘I love you’ Mommy and Daddy, too Brings such warmth and comfort Reminding you Of their pure nature
There may be frowns Tears and anger, too Yet through the years The bond only grows stronger
Indescribable love awaits you For they are coming Cora and Evee Just for you
I couldn’t play any of the games but it was fun to watch. I was a little hurt that we skipped my baby shower pictionary game. Robby and Zoe got a lot of nice and useful gifts. The present my nurse brought was a big hit. It was personalized baby bibs and knit caps. I’m glad everything went smoothly and hope that the arrival of the twins goes just as well.
Thanksgiving was different. Thanksgiving has been different for me since I lost the ability to eat in 2003. Everyone decided to have the meal at my Aunt Cyndi’s in Pacifica. This made things stressful and complicated. It takes 3 to 4 hours to just get out of the house between all of our needs and medical care. Then there is the 3 hour drive. After a little confusion we arrived. It was a tight fit getting all the wheelchairs inside. I couldn’t move anywhere. The thing that bothered me and hurt my feelings was that no one talked to me the whole time except to ask me to move out of the way so they could get out the door. I’m a very social person. When we are at our house I can move around and approach people and get close enough so they can hear me and we can have a conversation. I couldn’t even really listen to conversations because they were too far away for me to hear. This put a real damper on the occasion. It was fun to watch the little kids playing, though. I do have many things to be thankful for though. It was a long day. By the time I got home and through all my care and into bed it was around 1:00 and I had gotten up at 5:45.
I am a bit stressed about one of my medications. My essential congestion buster, Hypertonic saline, is not going through. The pharmacy keeps saying that it is unavailable. Dad is guessing that the demand has exceeded the supply or perhaps the company has gone out of business. Whatever the case, I have noticed that I am more congested and it is harder to move the junk in my chest. I really really really do not want pneumonia!!! I don’t know how many more pneumonias I have in me before I am completely vent dependent. That would be incredibly difficult.
Well, I don’t want to end on a depressing note. I am excited to be entering the Christmas season. We have many Christmas traditions and plenty of decorations to transform the house into a winter wonderland. I am so thankful for the gift of Jesus Christ. Without his birth and supreme sacrifice life would be meaningless. Let us remember the reason for the season.
I should be on TV December 1 on Discovery Channel on Weed Wars. After getting permission from my church leader & fervent prayer, I started a regimen of medical cannabis (aka marijuana). It works great on my horribly painful leg cramps, helps me take in enough oral food to prevent damage caused by TPN (IV nutrition,) and helps me sleep & treat my Nightmare Disorder. I don't get a high or any altered consciousness or personality changes. I think it should be allowed as medicine everywhere. I thought I was a good stereotype breaker so check out Weed Wars December 1 on Discovery Channel :) Might see me :) It is a series (miniseries??) so I might be on a later episode.
Well thanks for stopping by. I enjoy reading you messages and words of encouragement. If you have a moment please sign the guest book.
Sunday, November 13, 2011 4:01 PM CST Nothing much new. Most days are same old same old. Get up, take all my breathing treatments, check facebook and e-mail, and do some indexing. I try to do at least one act of service a day, whether it be offering support and advice on tracheostomy.com, vacation tips on disboards.com, or advancing geneology records by transcribing on family search. Actually, I have been transcribing one record a day for about two weeks. It helps me feel productive.
Thats one thing that I struggle with. Feeling useless and burdensome. Transcribing records helps me to feel like I am offering something to others instead of always asking for something.
I did have something pretty cool happen last night. My whole family had the opportunity to see Riverdance live. Riverdance is an Irish dancing and singing performance group. I am part Irish and really enjoy Celtic dance and music. The performance was excellent. I have no idea how the dancers manage all that intricate foot work, especially while simultaneously keeping their upper body still. My favorite dance was a sort of warrieor dance by the male dancers. The whole performance was excellent and enjoyable.
Medically, I have this strange lump on my arm that is painful. I am thinking it is some kind of growth. I need to see the doctor to investigate, I'm thinking it will be the start of more medical drama.
We are preparing for my brother and his girlfriend's baby shower. They're having twin girls. I am sure that will entail many adventures. But my brother has a kind heart and I am sure he will make a great father.
Thats about all the news. Thank you for stopping by. I appreciate all your support, messages, and prayers. Please sign the guestbook if you have a moment. I enjoy reading your comments and supportive messages.
:) Christamae
Sunday, November 6, 2011 1:59 PM CST Sorry it's been so long. I couldn't remember how to log in.
The seizure I had that interrupted vacation has really effected my memory. I have forgotten important things. Like I reremembered the death of two aunts. My short term memory isn't so hot either. It's frustrating and depressing. My mind was the one part of me that worked. I hope it comes back.
I had a wheelchair appointment to work on my new chair. We made some progress but have a ways to go. everything has to be so precise 'cause I am so positional with limited movement. It's a process. Thankfully my old chair is working now. I prayed really fervently and it just started working. I know God had a hand in my chair's sudden recovery. I am using it until my new chair is all adjusted and fitted.
We had a combined birthday party for all the October birthdays. It was a nice little family celebration.
Zoe (my brother's fiance) is very pregnant with twin girls. We are all getting excited for their arrival. Mom wrote this cute poem for the invitation to the baby shower. "Two be-twinkled girls with starry eyes are streaking closer across the skies. Let’s have a baby shower really soon before Zoe’s tummy runs out of room!" The theme for their room is stars/space so we are trying to stick to that theme."
One thing driving me crazy is my nighttime ventilator. The old one was switched out for preventitive maintenance and this new one alarms constantly. All night long it alarms high pressure. needless to say, it's hard to sleep.
I have found a new hobby-indexing (family search). I transcribe old government records like censuses for people doing genealogy. Mom said it really helped her find some of our ancestors. I enjoy serving.
I have a new medical mystery. I have a strange, painful, hard lump on my arm. Something else to be investigated.
Well, that's all I have. Thanks for checking in!
Sunday, October 16, 2011 1:45 PM CDT The past week had some excitement.
The best was seeing Dolphin Tale with Laura, Danielle, and Danielle's nurse -Danielle's treat. Excellent movie.
Friday I had to get up super early to work on my new chair at ATG Rehab-excellent service. It's such a long and arduous process to make all the needed adjustments. Still needs more. I have an appointment in November.
Still working on reading all the baby-sitter's club series.
Not much else goin' on. Just fighting my way through day by day.
Please sign the guestbook!!!!
Christamae
Sunday, October 9, 2011 2:31 PM CDT Nothing super exciting has happened.
I am struggling with knowing what I should be doing. I feel pretty useless and like baggage. It is disheartening to spend your days doing random purposeless things.
I did have a birthday October 3rd. I am now 26-hard to believe. Nothing super special for my birthday. We played Strategy Sorry and Disney Scene It. All of us kids were born in October so we are going to have a combined celebration. Thanks to Lu for the card and all the birthday wishes on facebook.
In other big news Uncle Buddy went home to Ohio. It’s strange not having him around….
We had a scare with our sweet dog Taco. He swallowed a screw! Fortunately, he passed it without incident yesterday.
In medical news I have a new issue. From my hips to my knees and my feet burn like they are on fire and are warm to the touch. I am guessing I have new nerve damage-probably from the attempted (failed) spinal tap on my fused spine at UC Irvine from when I had my seizure . Yuck.
I will try to get back to once a week updates. Thanks for your messages! Please sign the guestbook!!
Wednesday, September 14, 2011 1:11 PM CDT Sorry to make everyone worry and wait. I had a pretty traumatic 'vacation' that I don't remember because I had a seizure and ended up taking an ambulance to UC Irvine.
I don't remember the fun of the first two days. The second night Dad found me seizing, unresponsive, and with my eyes fixed. I got the report from family members. Dad saw me and said, "I am trying not to freak out." Danielle's nurse, Amanda, leapt up from bed to help clear a path for the paramedics. They expertly moved me to the gurney by moving my foam pad that I was laying on so all my props were left alone. I was admitted to the adult ICU at UC Irvine.
I siezed for over 12 hours and had a fever. I was sedated with propofal but ativan stopped the seizure. My incredible family, thinking of me, drove home with Mom, Danielle, and Amanda then Dad drove back down to Irvine to stay with me. Thankfully, Dad got back before I woke up. I am grateful beyond expression that everyone sacrificed to do this. I have no way to talk or call for the nurse. Not to mention I would have completely panicked. Our friend Laura and Danielle's nurses covered her.
Dad was allowed to stay with me even though I was in adults. Some ignorant doctor insisted on doing a spinal tap to check for meningitis which failed because as we told him I have a fused spine. They didn't let Dad help position me so I now a very sore arm. I never got a firm diagnosis but was on 3 antibiotics. But the nurses were nice and I was beyond grateful to have Dad with me. I am home but still feel off.
The biggest thing is my memory. I remember only a couple brief moments of vacation. And I have big gaps over the past month-importantc things like my brother is expecting twins. I am also having trouble retaining information. I really hope this resolves. My smarts and memory were something my body did right. To top it off my wheelchair tilt/recline broke and it takes finagling to drive.
To top it all off we missed vacation :(
I appreciate your prayers and good vibes. Thanks!
Saturday, August 13, 2011 2:45 PM CDT Sorry for the delay! I had a totally unexpected development- my parents decided we could swing a five day trip to Disneyland. So I have been madly researching and planning. Our last trip to Disneyland was definitely less than stellar. It was freezing. Cast Member's were cranky, wheelchair accessibility was a disappointment, many favorite Disney World attractions were missing, and we had some whiny tweens ruining the magic we did muster up.
I did 0 planning for that surprise trip. So I have been really busy planning this trip. I really hope we can have a good time. It's not Disney World but it should give some magic. One thing I did do was get a bunch of pins to trade. I love pin trading!
I still have work to do so I will have to leave the rest for later.
I will answer your question on the book series- The Baby-Sitter's Club!
Thanks for all your support! Disney days are the 17th-24th.
-Christamae
Tuesday, July 26, 2011 5:13 PM CDT Sorry for the time lapse. I have been feeling beaten down by life like things just don’t seem to work out for me. I have had a hard time motivating myself. And I have had to go with Dad on a bunch of errands.
Quite a bit has happened. Something that still hasn’t happened is me getting a nurse. That is getting extremely frustrating! I need a nurse! At this point we are even willing to transfer some of our IHSS hours/income to an unlicensed caregiver just to give Dad respite.
My trach culture came back positive for pseudomonas. It must have been a lot to show up in blood. I was supposed to get TOBI but I never had it called in (?). I am guessing it was denied. It was before. The good news is that the extra congestion seems to have cleared. I stepped up my breathing treatment schedule and vest treatments. And I am sure your prayers helped. Took a toll on my lungs but I can still talk.
I finally got the horrible gj-tube changed out. We had to get up at 3:00 AM to make the appointment. Thankfully we no longer have to spend an hour searching for parking and make the trek to the hospital. Security allows us to park in the ER area. The actual tube change went well. I had one of my favorite IR docs doing it. The procedure hurts and is unpleasant but at least he is gentle and listens. The new tube is my original size tube. It feels soooo much better. I just hope it stops leaking around the stoma. The leaking is very frustrating and results in the need to change clothes.
We were finally able to go see Cars 2. It was excellent! I might even like it better than the first. I highly recommend it.
I decided to adopt a U.S. soldier. I saw the organization featured on extreme makeover: home edition. I hope to send letters and other online things like puzzles and local news. I mentioned this because it is a pretty neat organization and maybe some of you would like to get involved www.adoptaussoldier.org
I have one humongous frustration that just happened. My parents decided to switch TV providers to att u-verse and get the bundle package that includes phone and internet. The actual service is good and we have more and better channels. But, and it’s a big but, is that the server box isn’t compatible with my ecu. My ecu is this specially designed universal remote of sorts that allows me to control things like the TV, DVD player, fan, etc, with one simple button. Well, the new server box isn’t compatible with my ECU. So I can no longer see what’s on or control my TV. Yet another thing I have to have help with. Every shred of independence is so important and valued. I hope we can find a solution.
We have started adjusting our bed and rise time to going to bed earlier and getting up earlier. It was difficult at first. But overall I like the change. I feel better and my breathing is a bit better. Also it makes it easier to get out and about. I get up at around 6:30 and get in bed about 10:00.
I have been having trouble following through on goals and even making goals. So I decided to try a goal that is easier and something I really like to build my confidence. I downloaded all the books from a series I liked when I was younger. There are about 160 books in the series. But I read fast. I want to finish all the books before school (August 28). I am on book 18. Hopefully this will help me set and pursue goals like I used to-with a passion and drive and commitment.
Now one really good thing has happened. We found an adorable, affectionate, awesome puppy in our backyard. He's chihuahua and fits in my lap so I can pet him. Everyone has fallen in love. I have been asking us to get a dog since Sampson died. Ohmygoodness. This dog-Taco Lil' Bit Zimpel- is the best!! I love holding and petting him. He's so fun to watch. He doesn't walk, he prances. He loves his toys. He is also super smart. He already knows some commands. He makes everyone smile. His antics help break up contention. We had to wait 14 looong days to see if anyone claimed him…but no one did so we are keeping him! Hooray!! It's official-Taco is ours! Took him to the vet (no chip!) and got his shots. He was soooo good. Everyone loved him. I know I do! Naturally after that Taco deserved a reward. So we took Taco to Petco to get some more toys. I have nightmare disorder which means I have had bad dreams all night every night. I have had it for years. I hate(d) sleeping. Well, when I hold and pet him for about 30 minutes before bed I don't have bad dreams! He is such a blessing! I think Taco had some help appearing in our backyard.
Yesterday we went to the State Fair…but I will save that news for next time.
I am sorry it has been so long. I have had a lot of trouble motivating myself. I really appreciate all your support, messages, and sticking with me. Thanks!
UPDATE COMING ON WEDNESDAY!! Sunday, July 24, 2011 11:48 PM CDT I have been working feverishly on an update. I type ever so slowly and have been busy. I will update with a big ol' update Wednesday.
Christamae
Sunday, July 10, 2011 4:55 PM CDT Sorry for the delay. Things have been crazy.
It is a good thing Grandma went to the hospital. Testing showed a blood clot in her leg. That could’ve caused some real damage. Grandma’s mom died of a blood clot that went to her brain…But the timing was awful. Buddy (Grandma’s brother) arrived before Grandma was released from the hospital… Grandma is home now and on a brief round of sub-q blood thinners in addition to a restarted oral dose. I am so thankful that Grandma pulled through.
My GJ tube seems to be going through different cycles-pain, leaking everywhere, feeling full. Not good. I am still waiting to get it changed out. I know I will feel better after the change but dread the pain of the change. At least my GI doctor apologized.
Buddy has arrived! He has been great to have around. He is just pleasant and helpful. I like hearing Buddy and Grandma reminisce.
Last week the whole family came out to visit. I always enjoy spending time with family. Time is precious. You never know if yours might be cut short…
One fun thing I have been doing is playing Nancy Drew computer games. I have them all now. They make you think and are just fun.
I had a pulmonary appointment last Thursday. Usually these are fairly nonchalant and just checking in and maybe adjusting/adding meds. Well, an idiot RT made the whole thing extremely traumatic. I have been really congested and it feels like I have a flare of my colonized bacteria pseudomonas. If I was under 21, I would still have the fabulous CCS insurance and could get the awesome nebulized TOBI, no problem. But I guess all my ailments vanished when I turned 22…I digress…Anyway, I found another nebulized antibiotic, Cayston, that also treats pseudomonas and donates the medicine if your doctor says you need it but your insurance won’t provide it. I just had to get a sputum sample (gunk/snot from my trach). Well, the RT was a stubborn know-it-all-yet-I-know-nothing. He wouldn’t listen to me at all. I told him that there was nothing in my chest loose enough to suction. My secretions don’t suction on demand. That would make things a whole lot easier. Plus, that time of day is my least junky. Now the first part I can be a bit sympathetic because it goes against training. Still, I know what I need and what works. He refused to suction according to my specifications. But then he reverted to a totally old school and damaging procedure. He suctioned way past the corina. You never do that! It hurts. It bleeds. It leaves the airway raw and wounded. I usually suction to 9.5, he suctioned to 18, 20, and more. I told him to stop and he just ignored me and argued, ‘I have to make you cough. I need a sample'. He was going to go again but I was able to avoid it by saying the key legal words, ‘I refuse service.’ That sample was just pure blood. I am worried that it won’t show the colonized pseudomonas that I know I have from every other test I have had because all he got was blood. He just kept trying to justify himself. We suctioned blood every time the rest of that day, part of the time the next day, and intermittently throughout the third day. I don’t think I suctioned that much blood when I had my trach surgery. It really hurt. I hate it when people ignore me.
We do have a very good thing around but I need to keep quiet about it until it’s official…July 19th. Just please pray that this little treasure can stay.
That’s it for now. I so appreciate your support and kindness. A special shout out to Lu for the card. You are all awesome! Please sign the guestbook!!
Sunday, June 26, 2011 3:13 PM CDT *Urgent prayer request: As I was typing this Grandma had a sudden unexplainable attack of shortness of breath. She had to call an ambulance...3 days ago she stopped her blood thinner...I am worried sick!*
It has been an eventful week. Some good things and some rough things.
I will start with a good thing...We all played Scrabble. We were trying to keep Grandma out of trouble aka working too much on her recovering knee but I enjoy playing games. Alas, I didn't win but it was still fun.
I had my second iron infusion at UCSF. It went smoothly. Then I had the dreaded desat test. I was happy to see one of my favorite RT's, Becky. I tried to relax and kinda sleep since my O2 always drops if I fall asleep without support. Then we just watched the numbers fall. It took 15-20 minutes for my O2 to fall to 85. That number is lower than any of the categories requires and Becky said that with a number that low, insurance can't put up a fuss. Woohoo! I am happy to report that I passed/failed the test with only slight discomfort. Thank you for your prayers!
Thursday I went to Interventional Radiology to change my GJ tube. It was pretty rough. He had no regard for my discomfort. He just rushed through. It was extremely painful. I found out the tube length was 15 cm longer. Ouch. This tube is also bigger around and shorter. The goal was to stop the leaking from my stretched g-tube stoma. However, the leaking seems to be worse and I have this pink skin (stomach lining???) protruding through the stoma. And I can feel the whole tube all the way through my gut and it pushes on my rib making it harder to breathe. And it hurts. I have given it a few days as requested by GI and I want it changed ASAP.
The good thing about Thursday was that I got to see Cam, again. Cam is moving to Boston in July. I was extremely upset when I found out. I have known Cam for nine years. She has helped me through some of the hardest times in my life. She is great to be around, easy to talk to, compassionate, great listener, makes you smile…awesome friend. I will miss her like crazy. Cam came out to our house to visit and say goodbye Tuesday. It was awesome! We exchanged gifts. She gave me a sweet gift of a 'hug' on a necklace...When she found out I was going to be super close to her (UCSF) Cam came up to visit again!
Uncle Buddy is coming out to visit again. His trip on the train has been stressful and full of complications. Now he might get here with Grandma in the hospital... He will be here until September. I hope it is a good visit.
The nursing situation isn't going well at all. The company isn't budging on the policy. In addition, we don't qualify through insurance and don't have the 'right' condition to get an evaluation. Plus, Danielle's nurse still can't lift...The whole thing is just maddening...
Thank you so much for your prayers and messages of support. They are so valuable and appreciated. I read and reread every one and on especially rough days I will read months worth...Please sign the guestbook!
-Christamae
Sunday, June 19, 2011 3:25 PM CDT Crazy bad week.
My life is falling apart. Evidently my inferior, incompetent nurse who I have been infinately patient with was cashing her check and blabbed about my case and mentioned lifting. I think she was complaining and didn't want to lift to begin with. Well, it was a different office/division (our local office assessed the risk & approved) and they told some other people and now they say nurses aren't allowed to lift...Excuse me? I guess the weight limit is 50 (I'm 63). I have tried slide boards. You don't slide. You have to be dragged which hurts. Very few toilets are the height of the wheelchair so you end up being dragged uphill. Not to mention getting your pants down. Oh, and our wheelchairs don't fit in the bathroom. I tried a hoyer. The sling pulls your legs apart and mine are stuck in. I tried it in 9th grade and the thing threw me forward and Dad had to catch me as I was falling. Smaller transfer lifts I have seen require you to put some pressure/weight on your feet. No way. I can't even wear shoes because of the Reflex Sympathetic Dystrophy...It's maddening. Even if we could find a lift that worked where are we going to put it? It won't fit in the bathroom. Between Danielle and I we have tried everything I know of. I have very little air reserve. It's very likely I will become desperately out of breath trying transfers (no oxygen) or hurt. I can't talk being transfered so I can't even say stop, help, I can't breathe. I should have fired the nurse last week. I didn’t want her to quit (makes me look bad), I wanted to fire her. One of the reasons I kept her was because it was obvious from phone calls and check advance that she needed the money. Guess I'm becoming too nice in my old age. I am just lost and so upset and confused. At this point it looks like my dream of independence will never, ever happen and I will be attached to Dad's hip for the rest of my life. Like I had to go with Dad for insurance enrollment and I had to go because Mom no longer feels comfortable being alone with me...I am more vulnerable and need things fast, faster than her weakened body can handle :/ Then I got more good news. Insurance is requiring an oxygen desaturation test. My O2 has to drop in the office in front of the doctor. I have good days and bad days. Different times of day are better or worse like after 3:00 is usually the best for me and I can usually pretty much stay off the vent. How can they base it on a one time doctor's visit? Not too mention I have to endanger myself and be miserable. It's just cruel and wrong. The worst is that I know talking will be gone. Maybe a few words now and then. I don't even think I will be able to be off the vent at all! It is a horrific thought. My worst nightmare. Not to mention the gasping & panic & misery I am going to have to go through. And if I can't manage to get my O2 to drop I will blame myself. Dr. Nielson is coming by or some pulmo guy is dropping by the peds outpatient procedure room during my iron infusion part 2 to observe my O2 dropping. It’s at 1:30 on Tuesday and I need some good vibes/prayers. Isn't it pathetic that I am praying for my SATs to be bad...I just hope they drop fast 'cause not being able to breathe sucks. With my luck my CO2 will skyrocket first (misery) and I will be stuck on 90...Stupid rules. I just have to get through it-until the next desat test is due (I think 6 months, might be less). I am so sure I will be automatically better in 6 months. It's a progressive disease people. *sigh
Looks like my suspicions on Mia and the lifting story were correct. Mia told Amanda, Danielle's nurse, that she showed the lift to her supervisor. So she just happened to have her son (2 1/2, stays with Grandma and Dad) to demonstrate which just happened to be the day after I told her her job was in danger. Like I said before, the office freaked and banned all nurses from lifting. Mia was never even shown how to lift! How could she demonstrate it? Tuesday I was appalled by the level of devious manipulation Mia is capable of and I think it sheds light on the true lifting issue. Mia: I know things might not work out but before you decide to let me go can I try to lift you? Me: Why? Mia: I was just curious if I could do it. Me: No…besides I thought the office told you not to lift? Mia: Well, yea, but I know you can’t use a Hoyer lift and any other nurse the company sends out won’t be allowed to lift but I would do it anyway. (said like she was doing me a favor) Me: Was that your plan? Mia: What plan? (innocently) Now Danielle's nurse was told she would be fired if she lifted. All her independence is gone. A big chunk of Dad's respite is gone. We are once again chained together. Any hope of independence-vanished. We have to go through this whole process of reproving why lifts won't work if we can get someone to come in and evaluate and if we can get the equipment then maybe the company will approve a lift. Mia's selfish and manipulative behavior has permanently affected all our lives and futures. I would be frightened to have her in a patient’s home where the person couldn’t communicate. I feel her ineptness would endanger life. She freezes in emergencies. She can’t retain information. She is manipulative and dishonest. She needs to lose her license.
When confronted, Mia claimed that the conversation with her saying she would lift (against policy, the policy she invoked through lies) me never happened! I just got rid of her and am making this false claim and making up her incompetence because I am upset about the policy. And because of some crazy mad call Dad made, they believe her! I can't believe my integrity is being questioned! I didn't make the freakin' call!!
The lifting is upsetting, yes, but the thing that is horrible is that she knew her job was in jeapordy (I told her Friday). She premeditated an almost blackmail by showing the company some crazy lift ('cause we never showed her) and then followed up with the 'I know you can't use a lift and any other person the company sends out won't be allowed to but I would.' That really hurts. I gave this woman infinite chances. I spent three hours typing a care guide. I dealt with incompetence. I would have been in danger if my parents weren't here to rescue her. There was never a day that went by that she didn't yell for help. I didn't even include everything like the snide comments, rolling of eyes, walking out during my care to talk on the phone without asking, making me repeat everything 2, 3, 4 times, she couldn't even put my feed bag up right, and more. I don't lie! I will tell the truth even if I look bad. It's engrained in my moral character and values. After all the crap I put up with, partially because I felt sorry for her...It's just appalling. I want nothing more than to just put this whole nightmare behind me. But I feel it is my duty as a cognizant, competent person to make sure no one has to suffer Mia's incompetence and manipulation. She told me she hadn't done official nursing job in 5 years so I think (not positive wouldn't want to be accused of lying) I was her first case back. I shudder to think what would happen if she was placed with someone non-verbal or someone with seizures or epilepsy who need immediate intervention suddenly or a baby on a vent. I truly feel she could kill someone or cause lasting damage...
After all the drama with the nursing agency my GJ tube popped. I am still waiting for IR to call. I requested some pain meds since my site is all sore and messed up. Interestingly when the balloon popped the pain inside got tons better. I am just feeling really hurt. To question my integrity and intentions with the nurse after all I did and put up with... So my life is going to pot...Haven't I lost enough already? I feel like every time I am offered hope (nursing) or something that makes life easier/better it is taken away...
:’(, Christamae
Sunday, June 12, 2011 5:40 PM CDT I have had a pretty eventful two weeks. Grandma Mae’s visit went pretty well. I enjoyed hearing stories about Dad and playing Chinese Checkers.
We have had some other visitors, too. Courtney and Lane’s adorable newborn daughter River June came to visit twice. I kinda held her. She is such a sweet natured baby. Kaitlin and Shayna stayed for a few days. Shayna came down from Utah. Shayna is thinking of moving back to California and going back to school for a Master’s.
I have had some bittersweet moments, too. My Aunt Gayle passed away last week. It is sad…but in a way I am almost relieved for her. She had a stroke about seven years ago. She was placed in a nursing home and lost the ability to effectively communicate. She was fiercely independent and I can’t help but wonder how this affected her. Also I wonder how much she was aware of? Was she totally cognizant but just unable to communicate? I know the frustration of not being able to communicate. It is maddening. I know she is in a better place and at peace... I had a visit from Sara yesterday. The visit was thrown off a bit by her announcement of moving. She is going all the way to Michigan…*sigh*
One of my fabulous nurses is retiring from UCSF in seven days. I will miss her superior care and kindness. Another fabulous nurse that moved to Tennessee is looking to move back to California and UCSF. That would be nice.
The saddest friend mover is Cam. I have known Cam for nine years. She has helped me through some of the hardest times in my life. She is great to be around, easy to talk to, compassionate, great listener, makes you smile…awesome friend. I will miss her like crazy. Cam is coming out to visit and say goodbye Tuesday.
Grandma June had her knee replacement surgery. She is having a hard time resting and letting other people help her. She is used to being a caregiver. She has been being naughty and cleaning! Like five days after surgery cleaning her room and scooting a cloth across the floor with her walker because the physical therapist was coming. We keep joking that we need to tie her to the chair! The thing is she got her knee all inflamed and infected. We don’t want her to permanently mess up her knee…Grandma is soooo stubborn!
Now the nursing update. I did get a new nurse about three weeks ago. Things aren’t going well. She took five days just to learn how to put the vent on. She still can’t put the cuff up and down right. To put it in perspective: We were driving in the car and I was a little out of breath and decided to do an experiment. So I just instructed Shayna on how to put the vent on. She has no medical degree and the car was moving. Shayna put the vent on perfectly. So it isn’t that difficult. Mia still has trouble with 95 f the very few tasks we have shown her. We are continually re-teaching her because she forgets. She has been late (30 minutes to an hour) or not shown up 12 out of 15 days she has worked. Last week was the last straw. Thursday Mia told us to call her directly when we were almost home from our outing. Dad said if we hadn’t called by eight not to come in. We called at 7:24 and her phone was off. Wednesday I specifically told Mia to come in at 6:00. Never showed up and never called. Saturday she was an hour late, knowingly scheduling an activity that would interfere with her work schedule, without telling me. Saturday I decided to confront these issues. I was kind about it and made suggestions like, ‘perhaps you could write down what time you are supposed to be here.’ I also decided to make a detailed step by step list of my care Monday. I told her she would need to study it and know the basics without prompting by Friday. She seemed fine. Even Mom said I was nice and it needed to be addressed. Next thing I know she is pulling Dad aside and saying she can’t handle the job. Whoa, whoa, whoa, no you don’t. When she approached me saying she liked me but was just too forgetful I said, ‘Don’t you want to try the detailed list?’ After confirming that’s what I wanted she withdrew her resignation and we will start the new plan Tuesday. If she isn’t vastly improved by Friday I have to let her go. Everyone says that I have interacted well with this nurse. If nothing else it has been a great lesson in patience.
I am signed up for Fall classes. I am taking a mixture of online and on campus. That way if something happens where Dad can’t take me I can still keep learning and earning credits.
Thursday was a fun day! We went and saw the Broadway musical Mary Poppins. It was good! My favorite scene was Supercalifragilisticexpialidocious. I have scene Phantom of the Opera, Fiddler on the Roof, Lion King and Mary Poppins. Lion King is my favorite. I got a souvenir pin for my collection.
Friday I went to get part one of my two part iron infusion. It went pretty well but was a loooong day. I had some unpleasant side effects but nothing too awful. I am hoping I will be infused with energy.
Today I was finally able to go to church! We have worked really hard to move bedtime to an earlier time so we can get up at 5:00 for church at 8:30. I have about three hours of morning medical care. It was great to be back.
Well, that’s about it. See ya next week! Thanks for your support!
Monday, May 30, 2011 1:47 AM CDT Sorry guys! Things have been tough here. I am just giving a little mini update for now.
The latest news: We had a whopper of a surprise last week when Dad's mom from Oklahoma gave us less than 48 hours notice of a visit. Bit stressful with Grandma Mae as she gets offended extremely easily and doesn't get teasing or sarcasm. And we have had some crazy nights. My g-tube has open sores and I am on an antibiotic for that which my stomach doesn't like. I have to go to UCSF for an outpatient IV iron infusion because I am anemic. I am hoping that is why my breathing has deteriorated and it isn't the dreaded answer of "disease progression..."
I did have an awesome surprise. stitches of love and kindness sent me a great blanket that is being used every day.
The last month in a few sentences. Insurance denied my Fentanyl patch long enough that I went through full blown withdrawals. The good thing: I have lowered my dose and am more awake and aware. I got a nurse-who turned out to be manipulative and left me unattended (!)-she's gone and I am back in the search. My peds primary care doctor retired. Danielle graduated suma cum laude from UOP. woot woot! My cousin Courtney and her husband Lane had a beautiful healthy baby girl, River June. I got a new $33,000 wheelchair. :-) It still needs some fine seating adjustments and a homemade vent tray before I can use it. I got new glasses and frames that I love.
Please pray for my Grandma June. She has knee replacement surgery Tuesday.
There's your mini update. Thanks for sticking with me! I treasure your support and messages. Please sign the guestbook.
(((hugs))), Christamae
Sunday, May 1, 2011 4:49 PM CDT Wow...sorry for the time lapse. The last few weeks have been extraordinarily difficult. I sort of shut myself in. I am really noticing the effects of going off my Lexapro. Lack of motivation and lack of confidence in doing things, event when I want to. Low self-worth and negative self-talk. Super high anxiety with multiple panic attacks every day...It has been rough. I did get a prescription for an anxiety med that helped me out in 9th grade. I am hoping I get some relief from that. My local doctor has prescribed me all the antidepressants he is comfortable with and the appointment with the doctor that could prescribe something is June 29th...Oi vei
In big events-I am done with school for the semester! Yay! It was only one class but still...One cool thing was that my psychology teacher/academic advisor asked me to keep in touch. I like her so that made me feel good. I plan on next year being my last at MJC. I want to take some of the classes I had to withdraw from to get the w's off my transcript. I plan on applying for my original plan colleges in the Fall and crossing my fingers and saying my prayers to be accepted for Fall 2012. Danielle has some pretty reliable aids/nurses now so hopefully Dad can be free to help me.
Or maybe I will have a nurse of my own. I haven't had the best of luck with nurses. My high anxiety isn't helping...May 5th I start with a nurse I found who wants to work with me, not just assigned. I am desperately hoping things work out with this nurse.
In other news I had my first wheelchair seating appointment for my new chair. This is the longest I have ever gone without a new chair. I got my current wheelchair Fall of 2003. Seating appointments are tedious, looooong days (up at 4:30, bed at 11:00), that can be discouraging. You have to rebuild everything and things have to be so specific. I need a lot of very specific kinds of support to sit up but it can't squeeze me or I can't breathe, it can't be too hard or I will be in pain, it must support my head but not push me forward...so much to consider. It can be overwhelming. We made some good progress but much more needs to be done. I do really like the bright green color.
Well, those are the highlights. I will try to be better.
I so appreciate your support and caring messages. I read them over and over. Thank you!
Sunday, April 10, 2011 4:32 PM CDT Things have been pretty rough here.
I had a really bad reaction to my Lexapro. As a result, we have been slowly lowering the med. But my anxiety/depression is skyrocketing. I had huge, horrible nervous breakdowns Wednesday and Friday. I have never been so paralyzed by my anxiety. The worst thing is that there is no end in sight. I am not even completely off the med yet and look at my body. Gotta find a new med.
I am way behind in my school assignments. I am approaching crunch time for my portfolio...not nearly enough work done.
In addition, I am facing a new health problem. It is awkward and embarrassing. All I feel comfortable saying at the moment is that it involves my girl parts. It is likely that I have some messed up hormones which could also be aggravating my stress.
Things have been really stressful here. I feel bad about not getting out and about to sign guestbooks. I am trying to remedy that.
There have been some good things. I enjoyed hearing from our church leaders during General Conference. Yesterday we saw Fiddler on the Roof. That was fun. Grandma's health seems to be stabilizing. Basically she is tired because she is older now and pushes herself too hard.
Thank you so much for your messages! They really comfort me and lift me up.
-Christamae
Monday, March 21, 2011 1:04 PM CDT Thank you so very much for your kind words and encouragement. I read them over and over and over and it truly helped.
Things are crazy busy for the next few days. Today I have a nurse coming to interview. Cautiously optimistic.
Tomorrow I am going to be filmed throughout my day for a Discovery Channel 12 part documentary.
The whole family has new glasses to pick up. That is always exciting. My new wheelchair came in to so now it needs fitted to me-an exhausting, overwhelming process. I have had this wheelchair longer than any other. I am excited and nervous.
My g-tube popped and I had to have it replaced last week. It went okay. The best part was visiting with my friend, Cam. Sadly, she moves all the way to the East coast in July. I am really going to miss her...
I am worried about Grandma. She has just been exhausted lately. It isn't her heart, which is great, but then what is it? She is understandably frustrated. I just want her to feel better.
In good news, the air conditioner is fixed! Go Dad!
I have started wearing a pulse-ox all during the day to help monitor my breathing. My parents and I have been having a ton of disagreement and conflict over when I need the vent. I hate wearing the vent because I can't talk. My parents were concerned when I looked sleepy or other times and would place me on the vent against my will. It was a huge fight. Well, the monitor has eased their concern and helped validate me. I can also use it to help me know when I need the vent. At first I was very opposed to the idea but I was wrong (gasp!).
That's all for now. Thank you sooooo much for your support.
Sunday, March 13, 2011 11:40 PM CDT I have been in a very dark, scary place. I almost completely broke yesterday. I had a talk and cry with Grandma about how I feel like a leech and nothing but trouble and nothing ever works out for me and nothing I do is good enough...Then I just completely withdrew. At first it was voluntary but the longer I was there, the better it felt, and I don't remember a lot. Really freaked Danielle out as she couldn't get a reaction out of me. I was just done. A blessing from the bishop (Brother Loftin) helped pull me out and give me the will to carry on.
Lotsa anxiety and depressing stuff. I will post more details and information soon. I just wanted to update everyone.
One big blow is that my nurse quit. The current blow-air conditioner broke... :/
Prayers appreciated.
Sunday, February 20, 2011 4:21 PM CST I have had some rough and tough moments. I have also had some promising social news.
My biggest trials were some creepy, scary, bad medication reactions. One incident was with a replacement med that made me think I was like three people. Yikes. The worst was from a med that has served me well in the past-Provigil. I had two crazy episodes that I would rather not go into. Let's just say that a possible side effect of Provigil is psychosis...and I will leave it to your imagination.
The worst part was that the Provigil was what helped me (or attempted to help me) stay awake and alert. I had problems falling asleep/out of it with the Provigil, how bad would it be without? I felt pretty down and desperate for a few days.
Then Dad reminded me of 5 hour energy. Ironically, Dad had suggested I try this while I was still on the Provigil but I had said that as long as I was on Provigil I didn't want to try anything...Well, I am cautiously optimistic. I have been breaking the bottle into 3-4 doses and dispersing it throughout the day. I can feel the medications effects gradually go up and gradually start to leave so I can titrate pretty well for full benefits. I have high hopes.
Things are looking up for my Personal Development class. My self-change project is to stop procrastinating. This has helped me get back on track with my assignments. Another goal is to try on a bunch of clothes. Some are older and I also have at least 15 items with tags, never modified. Fixing clothes is such an ordeal that I keep putting it off. Between the old and new clothes, I practically have a new wardrobe. The final part of my project is to finish training my nurse. So, tomorrow we will do the whole bathroom routine.
I have really been trying to put myself out there to socialize and make friends. I had some nice conversation with Carrie and Paris from competitive speech. Imagine my surprise and delight when I come home to a facebook friend request from Carrie.
I am hoping that the events of the past couple weeks culminate into a step in the right direction.
Thank you, thank you for your messages and prayers...They are much appreciated.
Christamae
Sunday, February 6, 2011 6:01 PM CST Lately things have been rough. I have really been struggling with depression. That is why I have been so silent. No ambition. Just an inability to do anything. I have had some nasty situations, too. First, my wheelchair battery kept running really low so people had to 'power push.' Then it wouldn't hold a charge at all so I couldn't move at all and had to be pushed. Then Dad changed the battery and I thought I was good. We needed some meds so I was off with Dad. Unexpectedly my chair completely dies. Nothing. I can't even tilt. Whoah, big problem. I have to be able to tilt or it will be really hard to sit up and painful. Other bad news-my medication is out of stock. The ride home is tough. I hurt cause I can't tip back. And I am freakin' about my chair. Thankfully, my wheelchair problem was just some unplugged wires that came loose after the battery change. Easily fixed at home. What a relief! This chair is old (7 1/2 years) and I usually got a chair every 3 years. I used this one at Ceres High School...My new wheelchair is still waiting for approval. It usually takes about a year for approval. Ridiculous wait. I am really suffering without my med... Then the ever present vent battle. I am beginning to think that nothing will ever convince mom and disgusted that I can't just stay awake. I am way behind on my portfolio for my Personal Development class. Fortunately, it is all turned in at once so I have wiggle room. Gotta get motivated and stop falling asleep. Those mandatory 50 minutes-on-the-vent-no-matter-what-if-I -find-you-asleep rule is hard. I don't think I should have parental rules since I am 25. But I do sometimes legitamately fall asleep...I just think I should be able to take it off, ya know. I am also doing an independent study project by being an assistant coach for the Forensics (competitive speech) team. I am not sure if it's going to work out like I had hoped...There is at least one girl who totally doesn't respect me... I am also trying to go to the young adult gospel study class (Institute) as part of a goal to be more social. It was nice having Grandma's brother, Buddy, here. I know she really enjoyed it. Nurse news-I finally got one. I want a different one. It doesn't help that Danielle has the ideal nurse. My nurse is okay. But she argues with me and does things that I ask her not to. I am having a hard time trusting her so I am dragging my feet on lifting and the bathroom routine. My major incentive is gone because mom has forbid me to go anywhere alone with the nurse until the vent issue is "under control". The nurse isn't allowed to take the vent off if mom or dad puts it on. The nurse is being pulled off when I am at school because Dad has to stay with me cause of the vent issue, kinda pointless. So now I will just see my nurse Monday and Wednesday. I have more hours that need filled. It's just frustrating and disappointing. So far, not the vision I had...Danielle's experience is pretty close... Those are the highlights...Hopefully this week will be better and more productive.
I am sorry if I worried you. I did check in to read your encouraging notes and really appreciate them. I will try to be better.
Christamae
Wednesday, December 22, 2010 8:07 PM CST I hope your holiday is going well. Everything here was pushed back in the frantic shove to finish school. On the final day (when I took two tests and turned in my essay) I was up 36+ hours. But I did it! Finished all the work and got straight A's. :)
It's [finally] beginning to look and feel a lot like Christmas around here. We transformed the house last weekend with all of our Christmas decorations. The tree was decorated on Monday. I love decorating the tree. Most of our ornaments are homemade or connected to other occasions. So it's like diving into good memories.
Over the past week we have been trying to cram in all our Christmas traditions. We watched most of our specials (Santa Claus is Coming to Town, The Year Without a Santa Claus, 'Twas the Night Before Christmas, Frosty, Frosty's Winter Wonderland, cartoon How the Grinch Stole Christmas) but missed Rudolph. We still need to watch White Christmas and A Muppet Christmas Carol. We need to go see Christmas lights. There are two awesome streets called Christmas Tree Lane that go full out with decorating. The town even pays their electricity bill for the month of December. Then we also have to make and decorate the Christmas sugar cookies. I am done with my Christmas shopping. And of course we have to read the story of Christ's birth from the Bible. It is the reason for the season.
Things are getting back on track with the nursing. I am all reenrolled. I decided to switch all my hours to LVN hours. I will qualify for more hours (I get a set fund and LVN's are paid less than RN's) and LVN's are a lot easier to find. I should qualify for 16 hours a day, 7 days a week. I meet the first candidate Tuesday.
My health isn't being cooperative at the moment. Last Saturday my g-tube balloon popped. So it is currently held in with tape. It is scheduled to change Wednesday, December 29, at 10:00 AM. I couldn't bear to waste a holiday celebration day up at UCSF with a medical procedure.
Now I am hoping to just avoid the hospital. Simply put-I feel crappy. Nauseas, achy, no energy, temperature inching up...I must not get sick! I will not spend Christmas in the hospital!! It is the only holiday I have always been home for... :,( I am already missing my friend, Sara's, birthday party...
Well, Merry Christmas! Many thanks and much gratitude for all your support and prayers!!
Christamae
Sunday, December 12, 2010 5:07 PM CST So sorry to keep you hanging. I have been insanely busy and stressed out.
Back to the hospital. I was a direct admit. Huge blessing as I didn't have to go through the E.R. Saved lotsa time. I was really glad to have Winnie. She is super attentive and a great lip reader. I was also greatly grateful that my pregnant cousin Courtney and her husband stayed for the night shift. I almost faced the nights alone. But Courtney came through and stayed nights doing an awesome job on night shift. I had a few annoying and not so great nursing moments...But the good news was that I did not have a blood infection! No blood infection...But I did have pneumonia/atelactisis. Crap. I hate pneumonia. While I was waiting to see if my blood grew a bug, I was on two strong IV antibiotics-vanco and aztriopam in the hospital. This is significant because (1) I think it really helped kick my pneumonia's butt and (2) I found a new antibiotic I can tolerate to add to my dwindling antibiotics I can take (aztriopam)
I was released Monday by one of my favorite nurses-Alanna. After deliberation, I was sent home on a lowered dose of zithromax. In the past it has made me violently ill but 300 mg seems okay. So another antibiotic to add to my arsenal.
I am thrilled to report that my pneumonia is gone and my breathing and time off the vent is back to normal.
The humongous stress is school. I had previously in the semester arranged with my Human Development teacher to change my Incomplete to a Withdrawal so I could have another semester to do the work. Well, the dean poo-pood that idea and said if I didn't have the work done I would get an F on my permanent record! Panic!! I have never ever gotten anything lower than a B on my high school/college transcript! That would ruin me. I found this out maybe three weeks ago. And I then found out that my teacher has to have everything submitted by Tuesday (two days from now) at 4:00 so I couldn't even take a test on Wednesday like I had planned.
So from Tuesday to Saturday I have been reading and studying my butt off, staying up into the wee hours of the morning, trying to cram three months of class into 6 days (I don't work on Sunday). I have read about 150 pages of textbook, twice, and taken notes over it for the two tests I have to take Tuesday. I had to arrange them myself with the teacher because all the disability proctors were booked with finals.
Tomorrow I have to finish my essay and study five chapters of information for the two tests. And write the bibliography for the essay which always takes forever...I just have to get done.
In other news, my Grandma's brother Buddy is here visiting for two months. It's been nice. I can tell that Grandma is super happy he is here. I have enjoyed his company. Every night he gets his guitar out and the family sings. Sometimes it is difficult since I can't sing anymore...but I try to vicariously share in the joy.
The nursing situation is still messed up. The last nurse I mentioned was a dismal failure. She treated me like a toddler, even tickling me. She was always missing days. And she couldn't understand me. When I verbalized audibly off the vent. Regular speaking. She even had the audacity to want me to point to letters on a board. Grrr. She is gone. Another nurse was sent out Friday. The day I went to the hospital.
So since I was in the hospital more than 24 hours, my nursing case has to be reopened. That is happening Tuesday when I get my normal dressing change. The aforementioned RN can only work two days so she is out. This time I am going to ask for LVNs instead of RNs and work around my TPN flushing. Hopefully I will have better luck and finally get some people in here.
That is the basic overview of major happenings.
My updates will get back to normal.
Thank you so much for your prayers and messages. Despite all the stress, the last few days I have been inexplicably calm. I know it can only been the Holy Ghost comforting me and helping me through this final, insane push to the end.
:), Christamae
Friday, December 3, 2010 6:39 PM CST I have a fever and have been told to go to UCSF. Really bad timing. I still have my incomplete tests and essay and tests in my classes and stuff to do with my TA stuff. A week and a half of school left. The worst timing...:(
A lot has happened since my last update. I have been super busy...I will try to update soon.
:(
Monday, October 25, 2010 9:55 PM CDT Sorry for the big lapse in updates. Things have been crazy.
I had a rollercoaster ride with a nurse. I have always idealized a nurse as my ticket to freedom and friendly companion. That idealization quickly came crashing down. I really, really didn’t like this last nurse. She rubbed me the wrong way. She treated me like a little kid and talked down to me. She did these gestures like when you talk to a toddler. She was also really slow on the uptake and would argue with me when I tried to instruct her. She was asking the exact same questions over and over. After 16 days she still couldn’t do anything independently and was lacking in a host of skills. She did one of my worst broviac dressing changes ever. Not to mention that she drove me crazy! We decided to switch to, miracle of miracles, another nursing agency that accepted the medical waiver. Imagine my surprise when the nurse who used to do my dressing for the old company who I really liked showed up to open my case! So far the new company seems much better. The nurse they sent seems very knowledgeable and picks up things quickly. She is a bit older and has a little bit of the little kid treatment going but I am cautiously optimistic. The best thing is having my superb broviac dressing change/nurse manager back.
I had a GI appointment. Things are pretty stable. I was able to get the flu shot.
Our electricity is working…okay. There is still an issue but we just don’t have the means to address it right now.
School is going well. I have the second highest grade in my Pharmacology of Abused Substances class. I am keeping up and enjoying exercising my mind.
Danielle had her birthday last Saturday. We watched Letters to Juliet. I was pleasantly surprised at how much I liked it!
Grandma is basically back up to par. Yay! I love Grandma lots.
Today I went to the store with Grandma to pick up the yarn for my Afghan. Grandma is making afghans for all her children and grandchildren. And it is my turn!
I am really going to try to get back to my consistent updating. I really love and appreciate your messages. ((hugs)))
Christamae
Monday, October 4, 2010 3:15 PM CDT Yikes! I haven't updated in a long time. I kept trying but something always interfered. Admittedly I have also been under tons of stress and have had a hard time motivating myself. I'll start with yesterday.
Yesterday was my birthday. I am a quarter of a century...25. I feel old...It is pretty old for Muscular Dystrophy years. The day was okay. Not terrific. Not terrible. I did get lots of birthday messages. The highlight was probably sitting around as a family playing Strategy Sorry. I love playing games. And everyone was laughing and joking and getting along...a real feeling of comraderie.
A special treat was having my cousin Courtney here. Yesterday she came out to help for a few days. She has definitely matured. She has been tremendously helpful. She knows how to suction and do my vent.
Grandma had abdominal surgery a couple ago. She had a hernia and a blood mass in her stomach. It was supposed be outpatient. But the mass was bigger than they thought and her previous hernia repairs had broken through into her intestines. She had a rough time of it. She wasn't mentally prepared. She had some hallucination reactions to meds. She got lonely...I missed her like crazy. Home is not home without Grandma. She just has a special presence.
Grandma is home now. She is still recovering. She even has a drain in her stomach. Unfortunately the wound is seperating slightly. the whole thing is a bit sloppy. Our biggest challenge has been getting Grandma to rest so she can heal. It is hard to get her to rest and let others help...
Last week we had quite the adventure with the electricity. Something has been 'off' with the electricity for awhile. Little surges and dips. Well, last week our electricity blew. Seriously-there was smoke and sparks flying. We had to do an emergency shut down on the house. The scary thing is Mom would've been alone with Danielle and unable to do the shut off or call for help. Dad and I were going to go Home Depot but the big van's battery was dead. So we called Laura to come sit with us. If she wouldn't have been here we could've gotten into serious trouble. Mom couldn't have even gotten out of her chair (electric lifting) to get out if there was a fire. The first night was pretty difficult just trying to find enough plugs on different breakers (is that how it works?) to run the medical equipment. A sad casualty was the x10 unit that runs my fan through my ECU. Well it got fried so now I can't turn my fan on and off. I used to use it all the time. (sigh) We did have an electrician come out. He assessed the situation, tightened screws, and cleaned things up. It definitely helped. But he says we need a whole overhaul and another box-I don't quite understand the lingo. Just that it is pricey...The power is stable for now so we are sitting on it...No money...Just for the crises...
I don't like the male nurse doing my dressing change...Still no sign of a personal nurse. Desperate for help...
Still running all over for school stuff...
Please look up life!
Thank you very much for your messages and prayers. I love 'em!
Tuesday, September 7, 2010 7:52 PM CDT Well, the past ten days can be summed up by the word STRESS.
I am being pushed to the limit. Things are extremely stressful at home. I am 24 years old but feel like I am being treated like a little child complete with punishments. I don't feel comfortable going into details but I could really use prayers.
The nurse thing is a jumble of problems. My nurse is still out on mourning because her Mom died. It turns out that Danielle's nurse wanted the hours 6AM-2:00PM so she could be with her kid so back to square one there. It seems like we are on a disaster bandwagon. Like we hit Grandpa's car trying to get to an appointment.
School has been a frenzied free for all. Neither Danielle nor I have someone to help us go to school. Quite a conundrum. It is a juggling act and I feel thrown around. There is a reason I chose to go to a junior college when I had previously been accepted to UOP. Well, multiple reasons. One was my anxiety and total lack of confidence. But the biggest was my health-my need to not become exhausted or stress my body. Yet I am expected to go to UOP MWF 10-6 and go TTH to another class at UOP. Where does that leave my classes? Well, I am enrolled in one class. The other two classes are incompletes. One is really early so the teacher is doing a sort of independent study with me. The other class I am a TA (teaching assistant) in and I am actually not going to that class so Danielle can attend her TTH class. Now my teacher did say that I didn’t have to come to class...Still...
Needless to say things have been frustrating here.
Thank you so much for your messages! They are a bright spot in my days.
Saturday, August 28, 2010 3:31 PM CDT Surgery went well. We were actually there a little early.
At first they sent me to the adult side and I totally freaked out. I was so not prepared. Fortunately, the nurse was very compassionate and cleared me to go to peds. The anesthesia doc was one I have had before and lets me go to sleep and wake up in my wheelchair.
When I woke up I was pretty sore and my legs were sore. I guess they kinda had them strapped to the bed so I wouldn't shift. They had everything propped as best they could.
The whole thing was outpatient. So we were home about 4:00. Before we left I said hi to a couple PICU folks. That was nice.
On Thursday I convinced the family to ask for help and to call Allee Hamilton who had approached us and made it a point to volunteer to help us any way she could. She helped us pack and it was much easier.
I am not sure if we will be at church Sunday. I am still sore and recovering.
We are facing a real conundrum. I start school next week. If I don't finish a handful of classes they turn to F's. Neither Danielle or I has a nurse...I do have a meet and greet Monday night. But it will probably take about a month for me to feel confident in her abilities. Especially given the last nurse. And that's if she works out. Facing some difficult choices.
Right before my surgery I got a haircut. I call it pixie hairstyle. It's comfy. It makes me look older. It's easy and low maintenance. I love it.
Thursday, August 26, 2010 1:43 PM CDT Today we pack the car to stay overnight at Family House for my 7:30 AM Broviac surgery. I am really hoping that the surgery goes well and marks the end of eight months of medical madness. This hospital stay is going to be difficult. I can’t have Dad with me at night. He has to take care of Danielle. Mom can’t stay with me at night either. In fact, she isn’t even coming because she doesn’t want Dad to have to pack all her stuff. But that means that the person chosen to spend the night with me is my Aunt Cyndi. I am terrified. She knows 0 medical care. She can’t read my lips. She is a heavy sleeper.
I won’t be able to be repropped if something comes out. I won’t be able to get up to go to the bathroom and will have to use other embarrassing and uncomfortable means. Worst of all, I have to just lay there, stuck in bed until Dad comes. I hate sleeping and being in bed. I think this part is going to be worse than the actual surgery.
It has been a rough week.
My nurse was transferring me out of my chair. My GJ-tube got stuck and she pulled it totally out of my stomach. All the way out-with the balloon still inflated. That has never, ever happened. But the next part was the worst. She just stood behind me and cried. She didn’t assess me or address the emergency. Laura immediately jumped in. She and mom stuck the tube back in. But now the tube was coiled in my stomach. It was no longer in my jejunum. No more food (I have the TPN). No more pain meds (bad-pain and withdrawals). No more antianxiety/depression pill (bad- not supposed to stop suddenly. No more allergy med (bad-lungs need to be clear for surgery). I got pretty upset. Still all my nurse could do is sit behind me and cry…I have a huge problem that she did nothing and disintegrated in this crisis. I have fragile health. I can be fine and then have a plug suddenly and not be able to breathe. There have been times where my vent stopped working, a piece of tubing came loose and had to be reconnected. Just a couple weeks ago we were at the temple when the suction machine wouldn’t work when I needed suction. Laura attacked the problem and kept trying until she discovered the issue. I totally have no trust in my nurse now. I don’t think she knows what she is doing. Actually she failed the oral competency test her supervisor gave her. I was here and when asked what to do if the tube came out the supervisor said she didn’t know. The supervisor told her. Then today I asked her what you did when the g-tube comes out and she didn’t know.
The g-tube change was especially bad. First I thought I was going to be sedated. Then I get to the hospital and find out that I won’t be able to use sedation. I hadn't mentally prepared myself for the pain of the tube change. It was pretty rough. It took about forty minutes. All kinds and sizes of wires and tubes and poking and prodding-even flipping the tube. It was all coiled in my stomach and forcing it into the jejunum is a big ow... The best part is the wrong tube. My tube has been leaking like a siv. The skin is broken down, bloody, and painful. It burns, burns, burns. We had to put tegaderm all over it just to have a chance it won't leak.
I hope this isn’t a sign of things to come. Really stressing and worrying.
Friday, August 20, 2010 7:56 PM CDT I've been really depressed and discouraged. Having a hard time mustering the initiative to do anything...
Danielle's nurse is gone. She claimed a back injury and tried to get workmen’s comp claiming she was lifting Danielle. Um, she hasn't lifted in weeks...We cleared that up, thankfully. That could've made it hard to get the company to let them lift. Needless to say she's off the case. But Danielle starts school next week and has no nurse...Quite the conundrum. The original nurse that was ideal for me and than pulled never came back. We appealed and were refused 3x. My nurse changed. This new one is nice. She is definitely not as versatile. The thing is-she is definitely not ready to take completely over my care and Danielle starts school Monday!! Danielle has no nurse or caregiver. I am still training this nurse. It is also clear that she won’t be able to use the bathroom without raising the toilet or drive the car for personal reasons. All of this has caused a lot of anxiety at home. What are we going to do when Danielle starts school?
There has been a huge stress in my life. When and how long I wear the vent has been an on-going, continuous battle. I was pretty happy with my parents prompting, wearing the vent for 20 minutes when found asleep, and I put it on, I take it off. Mom suddenly sets up this ridiculous plan to ‘teach me a lesson.’ It doesn’t matter if I wake up or recover. If she thinks I look asleep or too tired I have to wear the vent for an hour! I am just appalled. Even if I ask her for the vent I have to wear it for 15 minutes. When I ask. I just feel totally beaten down. Almost violated. Where is my right to choose…I have been very depressed and out of sorts.
We went to the California academy of sciences last Wednesday. It was the free day. Due to my funky mood I was feeling kinda bitter. The museum staff recommended that patrons with disabilities not visit because of long lines and crowded conditions. So we asked if there was a discount or discounted day for people with disabilities. No. I got a bit hot under the collar as this seemed a bit like discrimination to me. I was a bit wary on going but Danielle was dead set. There was a lot of traffic on the way in. Then there was a long trek from the car to the museum including sliding down a steep hill and going backwards off a curb. Then we had to stand in the line in the cold for 30 minutes. We always start out at the bathroom. The ‘disabled’ stall was tiny! It was barely big enough to get my chair in. I had to elevate my wheelchair to pull up on top of the toilet with Dad standing precariously on the toilet to handle the door. There is absolutely no way that a person in a wheelchair could use that stall independently. There was a better fitted stall but the baby changing table was in that stall so Mom waited about 15 minutes. It is totally inappropriate for changing stations to be inside wheelchair accessible stalls. Needless to say I was a wee bit irked before we started our tour. We only had time to see the Rainforest exhibit. Now I did enjoy the exhibit. There were many animal and plant life exhibits. I especially liked the lizard with independently moving eyes and the gecko. The ultimate awesome were the free roaming butterflies. I love butterflies. The rainforest exhibit was the natural climate-meaning hot and humid. The high humidity got my chest irritated so I was being suctioned a lot. My heart was pounding and I just felt gross. I felt better after getting out of the heat. Unfortunately it was then time to leave. After only two to three hours. Back through the bathroom. The museum staff were patient and friendly. Although I know they thought I was young. They let us stay in the museum while Dad went to get the car. One of the caretakers brought out stickers and said, “These are for the kids. Most kids only get one but you get two.” Oh boy. I just smiled, while thinking, I wonder how he would react if he knew I was 24? The drive home went well. It is so hard to go anywhere
I did have a big bright spot in the week. My friend, Cam, sent me some pins from Disneyland. I collect Disney pins. I asked her to pick some up for me on vacation and I would reimburse her.
I think the reality of my situation in life is really getting to me. The nursing isn’t going as I hoped. The limitations of nurses drives home even more how wonderfully versatile and creative Dad is. He just makes it work. I really hoped to have some periods of total independence. The whole vent situation is maddening. Proves to me that my free will can easily be taken away…
I need to get in a more positive mood before my broviac surgery on the 27th.
Wednesday, July 28, 2010 7:05 PM CDT We had some major happenings over the past week.
I am fortunate that Dad is such a handyman. He can fix just about anything. We also had a small one-room air conditioner in the garage for Robert’s room that we commandeered for the family. Night went quite well, surprisingly. The next day started early. At first I thought we were doomed because none of the places that Dad called had the right size blade. One place said they would order the part and it could be here in a week…A week! It was getting quite warmly. I was imagining a pretty grim fate. No air conditioning. For a week. In July. Is it possible to melt? Then midmorning the store called back and said he happened to find the right size fan! I felt very blessed. The fan blade was a little big but Dad made it fit. And in less than 24 hours, the wonderful world of air conditioning was back in our hands.
Well Friday sucked. I had to get up at 4:00 AM to get to the 10:30 appointment. Things started out okay. Anna gave me a hug and Lisa came in to be my Child Life person. I was feeling optimistic. We decided to try my leg first. Two attempts later and it was a no go. We regrouped and took a bathroom break. Lisa had to leave and a lady named Rose came in. Then Anna searched my arms. It was determined that I needed to transfer to the not so comfy bed. Plus we had left all my props at home in anticipation of the PICC being placed in my wheelchair like last time. So I awkwardly propped with the available pillows and receiving blankets. Dad assisted Anna by stretching the skin on my arm. The first painful try the vein collapsed. The second painful try it was in and Anna stitched it, secured it, and sent me to x-ray for a stat film. It actually was stat as it happened in like less than 10 minutes. Back to meet up with Anna to confirm placement. While I waited I grabbed a raccoon from Teddy Bear clinic. The only problem was-the PICC was coiled! So after all that work we just had to pull it. Back to the way I came in. It was about 3:00 by this time. The good news is that Anna said she can't see any obvious problems.
Sunday started kinda rough. Everyone was a bit moody and we were late to church. But when we came home we had a fabulous surprise…Shayna was here! I didn’t think she would make it out here before she had to leave. We dove right in to visiting.
Monday we went to the California State Fair. We were supposed to go last Thursday but had to change that plan because of the PICC placement, now failed attempt. What was extra special was that now Shayna could go with us! Even Robert and Little Robert joined. We had a full van. The drive was very easy and pretty fast-about an hour and a half. As we prepared to pay, we had another pleasant surprise. Attendants for people with disabilities were free. So that cut our cost almost in half. Nice. I had an attraction list and location but nothing was firmly planned. We decided to head for the audio animatronic Dinosaur exit. It was pretty realistic and well done. I liked watching Lil’ Robert’s reaction, too. The only bad thing was that the fog really got me coughing. Some of our time was spent just cruising around. We tried to watch this Motocross show but it repeatedly got canceled because of the wind. We did watch this show of Parkour Percussion by Street Beat. It was pretty good. It was definitely a good place to eat lunch. Especially for me since I can’t eat. My favorite part of the whole Fair was definitely Get Animated. It was this whole huge exhibit on animation. A significant part was provided by Disney Animation museums. I pretty much focused on the Disney stuff. I never realized how much time was spent on details like random movement. There was an exhibit on Disney’s upcoming movie Tangled. There was this whole section on how her hair was an integral part of her expressions and how she was constantly playing with it and drawings like anger, disgust, scared, the pacifier. Then there were examples of character development. I liked seeing how past movies were made, too. One exhibit showed the process of transforming Cinderella into her ball gown. Then there was a whole wall with 4 seconds of the original Steamboat Willy drawings. Really made me appreciate the intrinsic details Disney goes to in everything they do. Another area had original drawings by Disney artists to buy. A bit outside my price range but fun to look at and dream. I did buy a simple replicated Tinker Bell picture. I could have spent more time looking but there were other places to go…Another fun experience was watching the Blacksmith demonstrate his skill. The guy was huge! Especially his hands-beefy. I got another souvenir here. The Blacksmith pounded Oella into a horseshoe keychain. Christamae wouldn’t fit. I always leap at an opportunity to have something customized with my name ‘cause it is never found standard. We saw a few other things but those were the highlights for me. Going to the Fair was a big thing in Oklahoma and I always went. This was my first California State Fair and my first State Fair in nine years. Makin’ more memories…
Still no nurse for me. Danielle has a nurse who is currently in the training phase. It is a nice break for Dad. He isn’t so swamped. I just really, really, really, really, really hope I get a nurse soon.
The next Zimpel big time fun is Saturday when we are going to see The Music Man. Plus it is playing in the new Gallo Center which is only about thirty minutes away.
Since my PICC fiasco Broviac surgery has been scheduled for August 27th. Surgery said I should be there over night. Dr. Lee is doing my surgery. I am really glad he is doing it. Dr. Lee has done all my general surgeries. He is a great guy. I am hoping this marks the end of 9 months of central line mayhem.
Better be because I am headed back to college September 1st.
That’s all for now.
Wednesday, July 21, 2010 4:04 PM CDT BAD!!
I delayed this journal 'cause I thought I would have some fabulous news about my nurse and share what our meeting was like...
Well, my nurse didn't even show up! The company called her several times and she never responded and then just never showed. Soooo, now I am back to square one for looking for a nurse.
Then when Sharon was doing my dressing change on my PICC she said it looked very red and mottled and irritated and warm and puffy. It has been sensitive to movement and some flushing. One of the problems with PICCs is that it can erode the wall of the vein. The wall can get thinner and thinner until it can perforate causing massive internal bleeding. So it can be serious. Anna, the PICC nurse, placed my past PICCs. Her first day at work is Friday and that is my appointment. Friday 10:30 to replace the PICC. What really sucks is that my PICC coach, Cam, won't be available...
Then last night at like 10:00 PM our air conditioner breaks. In freakin' July. It gets to be like 106 on a regular basis. Plus I have medical equipment that heats up the house like an oxygen concentrator. And I get really sick when I get hot.
So all my hopes come crashing down and crazy complications ensue...
Tuesday, July 13, 2010 I had a pleasant 4th of July. We had bought Dad this firework package at Wal-Mart thinking it was some fun small fountains. Turns out they were all confetti pullers like thirty. :/ Dad gave Danielle and I the poppers and we had fun popping those with our wheelchairs. We bought a pretty substantial supply of fountains. Some were only a few seconds…but still. I also enjoyed watching the big explosions of our neighbors mortars and other big fireworks. You could hear when the mortar was released from the tube. *thwop Then we would all scan the sky for the explosion. The only major disappointment was when my $21 finale fountain sputtered out after a few seconds. It was great to be surrounded by family and fireworks just living in the moment.
Before I do the week update I have to share two happy things:
I do have some fantastic news concerning Robert. Robert had a pretty long cognizant talk with mom apologizing and acknowledging he went off the deep end and told me he went 'over the edge.' He seems basically back to his normal. I am guessing he had an episode of stress induced psychosis or the classic nervous breakdown. Whatever you call it, I am thrilled he has returned to his right mind. What a relief! It has become obvious, though, that living with us and helping us is not good for Robert psychologically. Robert wants to go back to Oklahoma and we are helping him by buying a bus ticket. The other happy big surprise is that there is a RN ready to orient with me as soon as Thursday-probably Tuesday! Wow. Shocker! It seems unreal. I don't think I will believe it until it happens. #1 question is can she lift me? That will be an automatic eliminator.
The past week has been eventful.
Monday and Tuesday were total yuck. I felt awful. My stomach felt so distended and bloated and nauseas. I was retching. I can’t barf because of the fundoplication. In times like Monday this seems like a curse. I was so bloated that I couldn’t breathe and had to wear the vent. I was so desperate for relief I took an enema. That helped some. After a double dose of my laxative I got relief.
Wednesday Danielle had an appointment at UCSF to do a surgery follow up. The drive went pretty good. But finding a parking spot was a nightmare. For the past several months Robert and now Grandpa have been dropping us off and then fighting the parking battle. Aunt Cyndi even drove down from Pacifica to drive us to an appointment to avoid the pain of parking. Our big bus van won’t fit in the parking garage. And it’s oversize proportions make finding a curbside slot tricky. We circled for thirty minutes with no luck. Dad dropped Danielle at the curb in front of the building and we continued the search for parking. Fortunately we found a spot a few minutes later. Unfortunately we had to park sideways on a steep hill several blocks away. After a small trek we met Danielle at the surgery clinic. There was a long wait but we chatted it up with the mom of a kid with spina bifida. The clinic was very busy. Dr. Lee said Danielle’s site looked good and that he would change the foley to a mic-key at the next appointment in 5 weeks. Then the fun. Cam came and visited! I always enjoy our visits. My GI doc Betsy popped in to check on me, too. After hearing my digestive woes she prescribed an antibiotic to knock down the bacteria in my gut. After a looooong drive home we basically just did the bedtime routine and collapsed into sleep.
After over a year and a half and many canceled trips and last minute changes, I went to the temple Thursday! It was wonderful to partake of the peace of the temple.
Going to the temple takes a lot out of me. It is very fulfilling but also exhausting. I have also been trying to listen to my body and give it more rest. I do not want to end up back in the hospital. So Friday and Saturday I rested and recovered.
We were able to go to church Sunday which always makes me happy.
Monday was a bit difficult. It is frustrating to be uprooted and taken from your plans to become a third wheel at the store. Anytime Dad leaves I have to go. Like this perpetual chain.
But that should be changing with my nurse!
Thanks so much for your messages! Please sign my guestbook!
Thursday, July 1, 2010 4:13 PM CDT Sorry for the delay. My internet has been acting up.
Danielle’s g-tube surgery went very well. Packing up the house was quite an ordeal, though. Poor Dad spent Father’s Day working his butt off. But the surgery itself went fantastically smoothly. This was my first time on the other side in twelve years. Let me tell you, it is loads easier. I was delegated to the hallway a lot. But I just took the opportunity to visit with some nurses. Almost all my favorites were on in the mere three days Danielle was hospitalized. She had surgery on Monday at about 2:00 and was released Wednesday about 3:00. So I guess that’s two days. Everyone was very happy. Definitely didn’t follow in my complicated footsteps.
While Danielle was in the hospital Betsy (GI) did my PICC dressing. She goes above and beyond the call of duty.
This week has been busy.
Tuesday Danielle had an appointment at UCSF Spine Center. It was the adult side. Pediatrics runs so much smoother. We had to wait 2 ½ hours just to see someone. Blec. Danielle suffers from back pain like me. The good news is that her back is stable and her scoliosis rods are in place. So no surgery needed.
Yesterday was really busy. First someone from Dynavox came to help calibrate my trial eye gaze system. I am getting a Dynavox eye gaze communication system. This will allow me to ‘talk’ in a fashion while on the vent. I have mixed feelings. It’s hard to explain. It will make communicating easier (although it’s slow). But it’s not my voice…Then my nurse changed my PICC dressing. Then I ran errands with Dad. I had this really horrible onset of pain while I was out. It took the max dose of my Dilaudid to kick it.
Robert is back. He basically stays in his room.
I do have some awesome news about nursing. I have been approved for nursing! The exact number of hours is still not written in stone-minimally eight more likely 16 or 20. We do have to be careful how many I take because IHSS (In Home Support Services) pays my Dad to take care of me and that’s our main income. The nursing agency is already doing some preliminary recruiting. Looks like I might be getting closer to my goal for the past seven years.
I am looking forward to the 4th of July. I love fireworks! Back in Oklahoma celebrating the 4th was a big occasion. Everyone went to the farm (I was so sad when it was sold) and gathered together with family, yummy food, and fireworks. Nothing can beat those days but I still enjoy watching the fireworks. I also try to remember the spirit behind the celebration. The United States is a pretty awesome place to live. More importantly, a lot of people sacrificed and some continue to sacrifice, even their very lives if need be, to ensure my freedom. Happy Independence Day!
Thanks for your support!
Wednesday, June 16, 2010 5:50 PM CDT I am sorry the update is late. Every time I sit down to write I get interrupted to go somewhere. Every time Dad leaves the house I have to tag along. This didn’t used to be the case. But mom no longer feels comfortable being left alone with me. She is weaker. And my breathing is more compromised. I had a couple incidents where I coughed a big plug that basically blocked my airway and it took her longer than she liked to get to me. It was scary for me, too! I’m the one that couldn’t breathe. I just figure that if I am comfortable with the risk than it should be fine. The whole situation is just maddening. It’s more work and trouble for Dad. I feel completely impotent-just a ball and chain that has to be drug along. There’s no reason I have to be there and I am certainly not helping. I will confess that it is also frustrating to just be told at the last minute that I have to go somewhere. It would be nice to at least get a warning or get to choose the time.
Yet another reason why I need a nurse! Last Thursday we did take another step on that road. The nursing coordinator came out to interview me and get all the medical details to apply for a medi-cal nursing waiver and see how many hours get approved. Prayers, good thoughts, good vibes for a nurse ASAP are much appreciated.
I voted in an election last week. Ever since I turned eighteen I have made it a point to vote in every election. Not only vote but also be an informed voter. It makes me sick and sad that so few citizens exercise this right and responsibility. I voted at about 4:00 and I was voter 15…15! Hundreds, thousands of people died for the right for me to vote. I dishonor their sacrifice by choosing not to vote. But if I don’t know the issues then I shouldn’t vote. Pamphlets are sent to my house, there’s a website. At least know the basics. This country wouldn’t have some of the problems we have if people looked at the issue, the law, the candidate instead of a well-funded commercial or empty promises hidden in a flowery speech. Okay, off my platform…just please vote and be informed.
Robert has gone off again. He no longer has the key to the car. He went down to the trucker stop and I presume he caught I ride. He did finally answer his phone and said, ‘he’s working on a project he’s been trying to finish for a month.’ From other vague comments around the house I know that he is at a friend’s house. At this point I don’t know if he’s coming back or what he’s doing. It’s all very sad.
I was watching a TLC documentary on jail life. I was dismayed and disgusted when a jail in Oregon was named as, “the largest mental health institution in the state.” 1 in 3 inmates are mentally imbalanced. In jail they are forced to take medication so they usually improve. Only to return within a couple months once again delusional because they no longer have meds. A jail shouldn’t be a substitute for a mental hospital. One inmate interviewed was extremely delusional and the court deemed him unfit to stand trial…but he was left incarcerated! Unless he becomes lucid. Why wasn’t he transferred to a mental institution?! The whole situation infuriates me.
My little great nephew, Rocklin, just had heart surgery and is currently at UCSF. Danielle has g-tube surgery Monday at UCSF. The whole family will be going up to the Family House by UCSF on Sunday. They could both use prayers, good thoughts, good vibes.
Thanks for the guestbook messages! I really enjoy reading them. Please sign the guestbook!
Monday, June 7, 2010 3:33 PM CDT Not too much has happened this week.
Wednesday was a busy day. Danielle and I both had appointments at UCSF. Both GI and neurology. I am status quo GI wise. Actually this is the best I’ve been in a long time. I finally found the right combo of meds and formula. I still get the majority of nutrition through TPN. But I have enough food in my gut to keep the good bacteria alive and prevent liver damage. So far my attempts at increasing my food rate have been unsuccessful. Currently I am working on lowering my methadone. I am lowering one dose at a time. Betsy seems happy and I am happy. I hope infection days are behind me. Neurology was a check in on progression…boo. Muscular Dystrophy sucks. It never stops working against you. As Danielle and I told Dr. Strober new difficulties all he could do was say, in a kind way, “It’s hard and I am sorry-I can’t really do anything. It’s the nature of the disease.” But now we are getting dismal. There was a very good thing…a visit from Cam! We talked for quite a bit while we waited for Danielle’s scan appointment. And then Cam stayed with me while Danielle went back. It was an older area with small rooms.
I am a very social person. I love talking and visiting. That is so hard to do now. So visits with friends mean tons.
Nothing that significant happened the rest of the week.
I was happy to go to church on Sunday. It was extremely hard missing so much church. Between all my sicknesses I have hardly been at church all year. Spiritual strength infuses me with a hope and resolve like nothing else. Going to church fosters that spiritual strength. Needless to say, it’s been great to be back at church!
Thursday we have a very important meeting with a nursing agency. It’s my official enrollment. Then I have to wait for a nurse to pick me. And it has to be a full-fledged RN 'cause of the PICC. Still, I have never been this far…
Robert is still having a hard time…so sad…so stressful…
Hoping to fit some fun in this week!
Monday, May 31 I will start with today. We all went to the mall as a family. Each of us wanted to look at/get different things. I got a Disney carved statue by Jim Shore. It’s Tinker Bell and says ‘let your dreams blossom.’ I also found a pair of pants that might work. Clothes that fit are so hard to find…Size ‘Christamae’ doesn’t come standard. Sunday we were able to play the game Clue as a family. I really enjoy playing games. Dad was all acting out mock interactions between characters…Last week we saw the movie Prince of Persia. It was okay. We have been making an effort to have more fun. The thing is that it takes a lot of effort. Planning. Preparation. Packing. Work. Bringing meds, equipment, breathing treatments…It can be a real deterrent. And everything takes much longer than typical. But we need it. This family is stressed and starved for fun.
Some good news is that we got a check for eight hundred some odd dollars. Evidently the government took too much tax out of some checks…Refund!
Things have certainly not been all fun and games, though. Had a really off the wall day. It was like I was in some comedy sitcom. Drive to this store and it is like an open warehouse. Takes forever to get what I need. Then the bathroom is upstairs. We are in an unfamiliar part of town and don’t want to get lost. So, after a couple tries, I locate a building that has a bathroom…kind of. There is like one bathroom for the whole building. I have to go in some random business to get the key. Then there is no accessible stall. That was certainly tricky for Dad. It’s a good thing Dad is so clever and strong. After this adventure we had to go to Wal-Mart. Here I proceeded to injure my foot. I got my foot stuck on a tow hitch when turning. My sock was all caught up in it, too. And the movement knocked my bells off. Panicked for a minute. But Dad heard the bells crash to the floor and came to my aid. My little encounter caused a sore foot and impressive bruising.
Today is Memorial Day. Characterized by sales that save us money. But today was established to honor the men and women who save our lives through military service. Thank you.
The issue I have been alluding to has become such a constant, big deal that I really can’t hide it. I am not going to go into details…Basically my brother, Robert, is sick-mentally. He has developed schizophrenia. His delusions are stressful, sad, and sometimes scary. He and we could use your prayers/good thoughts…
After these past four months of medical madness I have been doing a lot of thinking. My body is weaker. Especially my lungs. Stress is huge. Dad is overwhelmed. What goals can I realistically pursue?
Thank you for all your support! Please sign the guestbook!
Thursday, May 20, 2010 11:16 PM CDT I am sorry that it has been so long…Things have been so stressful here. It seems like we just go from crisis to crisis. We are also dealing with some other issues that could use your prayers.
In good news, I now have a nurse coming to do dressing changes on my PICC. This is so much easier. It is also more controlled. Additionally, the hospital gave us masks and gowns to keep the procedure as sterile as possible. Doctors said we should treat the change like I am a neutropenic patient because of my history of infections. It is also good to be connected to the nursing agency. A little foot in the door might open up possibilities of full-time nursing.
I have also had vent drama. Changed the circuit (tube) on the vent on my chair and it wouldn't calibrate. Tried many times. Called the vent company and swapped vents. But when I put on the swapped vent it didn't breath right at all. In fact it was doing the exact thing that the vent I had them pick up last time did...They never serviced it. So I took back the broke vent that wouldn't calibrate. It hasn't been breathing right. I keep having to adjust volumes...Also this vent has some sort of electrical issue. The battery lasts 30 minutes maybe (usually 6 hrs) and when I plug into my wheelchair it zaps the battery dry...At least I have the bedside vent. Still this is pretty unsettling. Especially given how very dependent I have become on the ventilator.
I had a follow up GI appointment. Overall things are going pretty well gut wise-for me. I don’t know if I will ever be off TPN, though. Mom and Dad keep saying-turn your food up, turn your food up…I’ve been out of the hospital like two weeks. I’d like to enjoy my happy gut for just a little bit. I’ve been miserable for over three years.
Yesterday Danielle and I went to our new pulmonologist-Dr. Nielsen. Actually he’s not exactly new. He had a brief stint as my doctor between Dr. Cropp and Dr. Mcquitty. The big news is that he is pediatric. Pulmonology has been extremely strict about not taking patients over 21. After Danielle’s latest vent failure, our old adult doctor basically threw in the white flag. Frankly I am thrilled to be back in pulmonary peds. They are so much better. I can only imagine the cajoling it took by big wigs to get me back to that peds service.
The best medicine for this family would be some fun! We are trying to plan some fun activities-at home and abroad. Things have become so complicated that we have to plan any fun. I am hoping to make a habit of playing a game together on Saturday. I really want to see Mary Poppins in Sacramento. We may be planning a bigger farther away trip, too…
I don’t know, that is a lot of work for Dad…
Last Saturday we went to a local dance through the decades show put on by youth. There was a big variety- Vietnese Waltz, Cha-Cha, Disco, Country, Hip-Hop, Lindy Hop, etc. It was just okay for me but everyone else seemed to really enjoy it.
One thing I have been doing is tons of reading. It helps me escape the stress a bit. Not to mention I have always loved reading…
I really hope some happy, calm, conflict free days are coming.
Wednesday, May 5, 2010 4:14 PM CDT After 35 days, a round of antibiotics to clear sepsis, 24 needle sticks, a new PICC line, new pain meds, 4 doses of I.V. lasix, formula trials for my feeding tube, and balancing my crazy calcium levels-I am home! with normal calcium, no sepsis/clean PICC, new formula Optimental, and Fentanyl patch. Still on TPN but my GI doc said that I have enough food going through my stomach to prevent any liver damage or thinning of the intestinal lining typically caused by TPN.
Time to be boring for awhile.
Christamae
The Stay May 2
Still at UCSF
A lot has happened since I was last able to update.
Um, we switched my food to Optimental. It is working better. Actually pretty well.
Infection was ruled out. And the antibiotics were dc'd two days later.
I called in the pain team and things have been messed up since. Not their fault but Dr. Soifer, my normal champion.
I am almost positive that he thinks I don't need need pain meds, period, and that I'm abusing them. That hurts almost as much as the pain. He keeps saying, you shouldn't have pain like this. I don't know why not. Dr. Diab said my hips are like arthritic 70 year old womens, I have Reflex Sympathetic Dystrophy, I have propiospinal seizures, nerve damage-not to mention I don't move at all. Another thing I just love is how he is continually bringing up my anxiety and blaming my pain on that saying I need to relax. Gee, I wonder why I avoided addressing my anxiety so long (my #1 worry was people not believing my medical concerns-especially pain)...
So, I was thinking of other ideas. I remembered the Fentanyl patch. I also thought it could benefit my stomach with less po meds, especially if I could dc my methadone (slowly at home). Kill two birds with one stone. Dr. Soifer wanted to raise my methadone w/ po dilaudid for breakthrough. I know how long methadone takes to ramp in my system (2 weeks) & po dilaudid takes about 2 hours to work and three-four to peak-if he'd said i.v. dilaudid i might've gone for the plan-even limit it to 2 doses a day...So we agreed on a fentanyl patch.
He told me the patch would be fully in my system in 4-6 hours. I am very glad that Maryanne was my nurse Wednesday night. I was hurting pretty bad by the time she came on 'cause Dr. Soifer dc'd all Dilaudid...what? I have freakin' Dilaudid at home. Also found out the patch takes *24 hours* to work. So I tried hot packs (nothin'), massage (a little but stops as soon as the person stops), Tylenol(with an hour wait after I got it-nothin')-by this time I had been hurting about 4 hours, more and more. Maryanne begged a po Dilaudid from the resident, I so wanted I.V...Laid down and had the worst cramps I've had in a long time. She rubbed and rubbed while I waited for it to kick in, kept saying, 'don't look so miserable, you'll make me cry.' About two and a half hours later the combo of lessening pain and the sedation of narcotics, I was able to fall asleep. Woke up in big pain-Tylenol hour delay again, begged the fellow for another po dose with the fellow saying, Scott's going to be mad at me...
Thursday Dr. Soifer claimed he told the residents to expect me to ask for po dilaudid (?) and I might need it-I don't know if I believe him. So I thought I had po Dilaudid on board. So being a good girl I waited a while to ask for the Dilaudid. Dr. Soifer came by and said that I could have one p.o. dilaudid between now (5:30ish) and discharge. I lost it then. By that time my pain was like a 9 and climbing. My nurse grabbed Dr. Soifer who first said that I shouldn't be in pain but after I was sobbing he said give her the dilaudid. It helped-eventually.
I also found out that the fentanyl patch is not for long term pain control, pain team said a month for me. So now I really think I made myself miserable for no reason and should've kept my mouth shut. My big goal was to wean off the methadone and hopefully help my stomach. Shortly after I laid down my cramps and pain shot up. All I could have was Tylenol. The cramps relented after an hour and a half. I slept very fitfully-waking about every 90 minutes. Dr. Soifer also dc'd all my iv meds-zofran, kitril, and versed, 'you will get no more i.v. meds.' It feels almost like he's punishing me.
We woke up earlier on Friday in preparation to leave...Things kept going wrong. My PICC wouldn't draw. An hour TPA dwell finally fixed that. When I first got up Dad discovered that my gj balloon popped. It has been especially oozy the last few days. Just spurting all over me-breaking down my skin and burning. Today has been really bad. I felt really crappy when I got up-the reason: When the blood draw came back my calcium was really high. The short story is that I can't go home until I have two consecutive calcium levels at the appropriate level. Last time it took 3-4 days. So first I got a 600 ml bolus, then switched to just plain saline and dextrose, and lasix-i.v. form. Lovely.
I am just so frustrated and a bit disgusted. Especially with the no belief/abuser factor.
My g-tube site is horrid. It is wound care now. The first change was excruciating. No pain meds available so I writhed and sobbed. It actually took about an hour because of continually pausing. One of the residents finally convinced Dr. Soifer to give me the po Dilaudid, after hurting for hours. Dr. Soifer came by yesterday and said I could have po Dilaudid for the dressing change because it's an acute care issue, while mentioning that my narcotic use has greatly increased.
It's tricky timing the dose to be in effect before the change and I feel guilty taking the med when I am not hurting...But this afternoon's change was much better with the Dilaudid. I.V. would be easier but I will take what I can get... Calcium has been jumping all over. The docs became much more aggressive today. So I have lovely lasix q6 and extra fluid running. Something good-I think the Fentanyl patch is fully in my system today because my pain has been a 1-2 all day.
I just feel generally gross from the messed up calcium and generally out of it. Earliest time out is Monday (May 3)-only if my calcium is okay.
I'll close on a positive note. While I was in house I saw a speech-language pathologist. She was evaluating me for a communication device. I tried an eye gaze system. She was impressed with my skillz and said I was the fastest first time tracker she'd seen. It's slow going and the idea of needing it is discouraging but the device itself is liberating.
Over a month since I was admitted. Hopefully home soon.
April 24
Yesterday they were discussing releasing me. I expressed reservations- 1) I know when TPN is started it's usually about a week of labs to make sure electrolytes are in balance 2) my temp shot up to 99.8 3) I just felt 'off'
Good thing they listened to me. All day I became more and more out of it. I slept most of the day. Then I became unresponsive. There is about a 5 hour window when I don't remember anything. Winnie was my nurse, who is from my back surgery days, and really advocated and backed up my parents. My chart said 'altered mental state.' Finally drew electrolytes: potassium low & calcium way high... Did you know that high calcium can cause coma and heart attack? Yikes. So my TPN is off and my body is being flushed with IV fluid. And I have had several boluses of IV Potassium. And they drew cultures and started me on a broad spectrum gram negative and broad spectrum gram positive antibiotic. My food is also off as I was getting sicker and we had the hard evidence of like 5x more gut drain. Next try is Optimental, then retry Tolerex...But I was ready to leave (sarcasm).
So, we'll see what the labs show and how long it takes for my electrolytes to settle...I know my body people!
April 20
Right now I am soooo frustrated and just plain mad. I have made myself miserable trying this food to lessen/eliminate sepsis. Then after days of extreme discomfort I find out that the food can cause sepsis! Now I definately do not want to go home on it. And I certainly don't want to trial at home. It will be too complicated coordinating adjustments with adjustments to TPN when close monitoring of labs is vital when changes to TPN are made, especially in close succession. And I want the I.V. Zofran available. It only works sometimes but when I take it in my gut it always makes me bloated. So when I have it IV at least I don't get the negative result with only a mere possibility of helping. In another way I feel like a complete failure. Everyone used expressions like 'power through', 'push yourself', 'keep trying.' I am worried that everyone thinks badly enough-that if only I was more determined or cooperative it would have worked. And I am worried about what Dr. Soifer thinks...
I have been pretty disgusted all day.
In other disasters, Grandma briefly left all her IHSS information, including her social security # in the bathroom and they were gone when she returned.
Grrrr...
So frustrated!
Christamae
April 17
Well, they got a line in. They called in an anesthesiologist who tried 4 times-I even let them try my foot. Then they called in the transport guy who puts I.V. 's in preemies. He missed twice-even tried my head. After 21 total pokes this stay the doctors decided a PICC was the last option Anna, the PICC nurse who got both my previous I.V.'s and PICC finally found the magic vein and I have a PICC. Cam was even there to walk me through it. The actual placement went very well...Yay!
Doctors had a big meeting with my parents. Talking about living wills, quality vs. quantity of life, dangers of TPN, etc.
My food is currently at 35 with I.V. fluids at 35. My stomach is pretty miserable. Bloated and nauseas all the time. I would be much more comfortable at 25 or 30.
Doctors think I just need to wake up my bowel. I am not sure if that is even possible...
April 12-Day 13
Things are going downhill. I just lost my 2nd I.V.-infiltrated. The PICC nurse tried twice and gave up for the day.
Doctors aren't concerned. But I am. I have to get my I.V. antibiotic in my stomach. I have been utilizing IV Dilaudid and IV Versed. So I am concerned about pain control. Also I become dehydrated quickly. Not to mention the IV Potassium. They won't even consider a temporary PICC.
I am at a stand still with feeds-30.
It's been a crazy day. Two 'code reds'-fire alarm, power outage, and the big inspection team JAICO is here so everyone is on edge.
Hopefully, tomorrow is better. And they get the IV.
April 9, 2010
Day 10
I am slowly plugging away on my food. At a rate of 25. I am bloated and have periods of nausea. The question is-how much is too much?
The team decided to try a low dose of Narcan. The drug is typically used to counteract drug overdoses. In small doses it is supposed to help motility and not effect pain meds. I hesitantly agreed to try the Narcan. Bad reaction. My heart rate went way up to almost 160-on the vent (averages 90s). Stomach was heaving and I was retching. And I was hit with this wave of pain and horrible cramps throughout my body. Oh no this didn't effect my pain med at all. I took my big dose of IV Dilaudid and it felt like about 1/3 of that. Irritated but not irate like I would've been if the pain med hadn't eliminated those miserable cramps...I agreed to try a much smaller dose. The whole day I felt 'off'-just flat and subdued. My pain control is still messed up...So that med was a failure. Scary that a med can change your personality.
April 6, 2010
Well, things are actually going better than I expected. My fluid retention is basically gone. The doctors said that my yeast bug can leak into the tissues and that's probably why I got so swollen.
There was a big meeting Monday with me with the head of the PICU, my neurologist, Betsy (GI), and Cam. I was really surprised (happily). Everyone was very supportive and understanding. We are trying food. The current trial is Crucial. I am at a rate of 10-3 hours on, 1 off. I will be here for a bit.
Danielle's bi-pap broke. She has been struggling for a few days with an inferior model. She is coming into the hospital for a ventilator/bi-pap equipment evaluation. She isn't sick and should hopefully be out in a few days.
I am on my second I.V. The first one lasted a long time for me (5 days).
Starting to get nauseas and bloated...
7 days and counting.
Oella Christamae Zimpel PICU 6 South UCSF Children's Hospital 505 Parnassus Ave., Box 0290 San Francisco, CA 94143-0290
April 1, 2010
They pulled the PICC, I have a yeast. Don't know the specific strain yet. But Dr. Soifer said that a yeast is much worse than any bacterial infection cause it's known to spread and stick to organs. In fact, he said he is not putting in another line. He and GI said I have to try food through my tube...again. Dr. Soifer said that IV nutrion is obviously not working. He did say that if I tried all the food and nothing worked he would concede. They want to do blood draws every day. It took 6 sticks to get the IV. I need a line. Right now I am more bloated than I have ever been. It is hard to the touch and stretched so far it hurts and I can't breathe. I just got off the vent-part-time on oxygen-new normal. You know how horrible it is 'trying' food-nausea, retching, bloating, diarrhea, constipation. I tried for over 6 months. Looks like I have no choice. But this very minute no way I could do tube feeds. I don't know what's going to happen. But being in that constant stomach flux is misery...BAD! :'( Christamae Well, I have spiked a temp of 102. I felt the sickness coming on...Right now I really hurt and it's hard to breathe. Two things that always happen when I get line/blood infections. My PICC inexplicably came open a couple days ago and leaked blood all over me. I jokingly called it bloodletting. Looks like that between the idiot dressing change and the bloodletting there were too many invaders...
So it begins...again!
:(,
Christamae
PICU Bed 4
3071 Malik Ave Ceres, CA 95307
March 7th 2010 Thanks for all the messages and cards!
Slow and steady, steady and slow-that's how my recovery goes.
I barely squeaked by to get the vent. The wait was because the company wanted to switch my vents to an LTV. The only reason I got the vent was 'cause my RT argued and pointed out legal complications. Uh, yea, the patient recovering from pneumonia. I hate the LTV! It won't breathe past restriction or if I get a plug and I tried it and my O2 dropped to high 80's within an hour. Not to mention the 4 class 1 recalls. Like shutting itself off which someone just posted about on tracheostomy.com happening again. I have that hovering over my head-cause they are going try to switch it and our only choice is to suffer through nasty tests or try to find a company to switch to (ha). The company has one other vent they will carry but I don't think it has internal peep and it has a max 1 hour internal battery. They can't change it w/o a prescription. But they could dump us if we refuse-no vents, suction machine, etc. Barbara Case told us to never let them just swap vents-they can't forcibly take life support (could bill us)-there should always be an in-stay few day hospital observation. Think of it this way-what if you were told you had to breathe like me-fast and shallow. Maybe the numbers would be ok but you would feel awful.
My dressing change on my PICC. These already make me extremely nervous. And they are uncomfortable. So first their STAT lock doesn't fit. So the thing that keeps the PICC stable and from wiggling is gone. Great. Now it's even more likely to come out. Then the helper nurse didn't hold it the whole time. She even completely let go for a few minutes when the chloraprep was drying with the extension resting precariously on my armrest. And with a PICC you are supposed to use 3 chloraprep-they used 1. They also didn't have the other barrier (Cavilon) that UCSF uses. Then they covered it with 3x more tegaderm. The best is yet to come. There is a pretty long extension that attaches to the PICC. She just started attaching, with a flush in her hand, when I double-checked, "did you prime that?" Her response, *chuckle, 'oops, I forgot, thanks for reminding me.' Oops-there was enough air there to give me a heart attack or stroke! Oops!! Then she couldn't heplock. The line kept back-flushing blood and she just left it. Uh, hello, if this blood clots I lose the line! Thankfully, Dad had heparin and alcohol swabs in the suction bag. He reheparinized and explained, "she just wasn't keeping positive pressure as she clamped." Well, good thing you know. Needless to say, I am not feeling particularly safe and secure. I even wonder if their slipshod work contributed to my infections. I had a port for 4 years. After I came home it was a year and a half before a less severe infection...But since I just have Medi-cal (no CCS/GHPP) the home infusion company won't take me. grrrrrr. The nurse at the infusion clinic rotates. So I rarely see the same person. I have only seen two follow proper procedure. Dad said that he didn't want the responsibility. Mom brushed off my suggestion of going to UCSF. If I get another infection-I will be more persistent. I looked up GeorgeMark house while in the hospital. I especially like how they are with you for life. Mom and Dad were extremely uncomfortable with the situation. It would probably take me several visits to feel comfortable with the nurses training. But I think I would like the whole social/activities jive. And with me there and Robert with Danielle maybe Mom and Dad could go off alone overnight. I want to enroll before I get older. Even the family events sound fun...Any suggestions on how I can help the process along? I have been doing sprints off the vent. I am trying my hardest to be responsible. Like I won't go off if I feel a plug. And I put it back on if I feel too sleepy. I was excited to try the first sprint and to see the reaction...There was no reaction. No Congrats or good job or great to hear your voice. I didn't expect a big hoorah. Just something like Robert's reaction the following day, 'Hey, your talking again-that's great. It's good to hear your voice.' My longest sprint has been almost two hours. I have to fit my time off the vent between treatments. I am going to need oxygen for off if I want to go extended times. I'll get the doctor to write for that Monday. I am having some new problems. The flank pain is worse and getting worse every day. Every pain is different-nerve, muscle, bone-this is different. I think it's my kidney. That could explain the nausea and headache. Lotsa kidney problems won't show up in bloodwork (stones, growths). I will not feel assured until I have a b-scan or CT. I see GI in Pleasonton on Wednesday and will request one. My most disturbing issue is a constant, insatiable, ravaging thirst. I have never been this thirsty in my life, even when being severely dehydrated. It's horrible. All day long my body screams for it. Even at night, I wake up desperate for a drink. Miserable. To top it off I have a gross taste in my mouth...Blec. That's all for now.
Any prayers or good thoughts or well wishes or cheery notes would be appreciated.
3071 Malik Ave
Ceres, CA 95307
:),
Christamae
Friday, February 12, 2010 8:39 PM CST I am in the hospital. My port came back infected with gram negative bacteria. So, the port came out last night. The procedure itself went well. The surgeon and anesthesologist. were awesome. They took time time to answer all the questions I had. They even agreed to do the surgery in my wheelchair. And they used sedation/disassociation/pain meds instead of general anesthesia. Much better for my lungs. Now port-less I face a new problem: finishing my IV antibiotics. My veins are very small, weak, and finicky. It has to last atleast one to two weeks. Actually longer. I have to finish the antibiotics (1-2 weeks). I also have to have three negative blood cultures in a row. These also involve needle sticks. My poor veins haven't recovered from the last stay...Then I have another surgery to insert a broviac, let that heal, and have Dad trained on it. I figure I have at least two weeks in house. I have no idea what I am going to do about school...I am currently in isolation because my respiratory tests checking for viruses haven't come back. I just feel totally weak and empty of all energy. The fact that for the first 24 hours I was over dosed on pain meds(10 mg instead of 1 mg) didn't help. You can send a note or gift to my room.
Oella Christamae Zimpel PICU Bed 2 UCSF Children's Hospital 505 Parnassus Ave., Box 0290 San Francisco, CA 94143-0290
or enter the note on this form http://www.ucsfchildrenshospital.org/send_a_patient_a_message/index.html
Tuesday, February 9, 2010 9:44 PM CST Well, my fever is back. Which 100 f the time means blood infection. I feel horrible. I have been stuck on the vent b/c I have all this junk in my chest and it's not moving and what does is yellow. Guess what? Bactrim can cause pneumonia. I am all messed up. Retching and nauseas. This sucks!!! All my stomas are oozing. Last night my g-tube dumped mucus from the stoma all over me. My trach is oozing. I feel worse then last time...My lungs better recover...I knew I should've stayed. Dad has been saying that he can't keep up with all this IV junk...blec :( Christamae
Sunday, February 7, 2010 8:49 PM CST I am home now. I arrived home Thursday evening. I am on three IV antibiotics. It hasn't exactly been smooth sailing. We have already had major stress. The access cap attached to my port wasn't compatible with the homecare tubes. So Dad had to change the cap. The nurse said that this is the absolute worst thing you can do because it directly opens the port to infection. There was a lot of stressing and confusion on what to do and why. After finally getting set up and started, I said, 'Wait, we have to pull out the gentamyacin lock!' I don't think the pump had turned yet. But Dad did really well with the stress. I am pretty concerned about Dad's ability to keep up the regimen. I mean we brought in Robert for relief from Danielle and I's routine care. A pretty big part of me wishes I would've finished antibiotics there. But I didn't say anything. I didn't want to take advantage of the pediatric exception and mostly I knew it would upset the family and I felt bad for Danielle and worried about Robert's willingness to continue. I also know that if the infection comes back, Dad will blame himself.
The Bactrim antibiotic makes me feel really gross and out of breath. It's got to the point this morning that I took all my morning treatments in-line the vent. I never do this. I am trying to run it slower tonight to see if that helps. The tobramyacin antibiotic is okay. An advantage is that this drug also treatments pseudomonis overgrowth. So maybe my lungs are getting a little treatment.
I am not sure how school is going to work out...I am stressin' on that.
I stop the Bactrim and tobramyacin on the 13th. Then I will keep an antibiotic lock in my port. This is a highly concentrated does of gentamiacin mixed with the heparin that is used to keep my line open when nothing is running. The idea being that the port stays saturated with antibiotic to prevent another infection.
A bit discouraged and overwhelmed.
Christamae
Tuesday February 2 UPDATE Tuesday Feb 2 Surgery was canceled at the last second. it was a crazy morning. i got up early in anticipation of surgery. surgery came by and we signed the consent. then a picu doc came by and said-wait, the cultures from two days ago are clear, let us consult with infectious disease. *2 hours later* Well for now we won't. if you stay clear for another 2 days you can probably go home on iv antibiotics. So maybe home is in site.
MONDAY, FEBRUARY 1
Bad news. The culture from my bloodstream grew the bacteria. Surgery tomorrow to pull port. :( Really discouraged and concerned about school. My big advocate doctor is here so that is good :(
UPDATE SATURDAY JAN. 30
Well, I am still in the hospital. My body is being persnickety. We are waiting for negative blood cultures. Before I can go home I have to have 48 hours of negative cultures. It appears that I may not be going home until next week. I was hopeful that I would be able to return to school Monday. I am disappointed. I really thought I would be at school. Even if I come home I will need to be on two IV antibiotics to flush all the bacteria from my system. I am debating if going to school while on IV antibiotics is a good idea. One of the antibiotics makes me sick...Feeling discouraged... :(
Jan. 27 My cultures are still positive. The doctors are going to switch antibiotics. I am a bit concerned because I have never taken the antibiotic and my mom and Danielle both had severe reactions...If this doesn't kick the bug then I will need surgery to remove this port and insert a new line. Also one of my meds has not been approved. As a result my pain is worse, my stress is up, and my leg cramps are back with a vengeance. Last night I had to take IV Dilaudid... We were not prepared for this length of stay and don't have changes of clothes, etc. Frustrations are building... Christamae
UPDATE TUESDAY JAN. 26
Still here. The bug has been identified as Serratia. typically found in males- my 1oming into play. I had a horrific night. I had the worst reaction to a medication. For like three hours I was at the peak of terror. And it was like someone gave me truth serum and asked, 'what are you afraid of?' Also I hallucinated...ug. It wasn't the antibiotic. I am tolerating that well. Waiting for 48 hours of no infection in cultures and set up of home IV antibiotics to be cleared to go home...
UPDATE MONDAY 1/25
I have been admitted to the hospital. I grew gram negative rods-the worst kind. I will be here a minimum until Thursday. I have a port/blood infection. I will be going home on IV antibiotics. I think I can go to school on those. Depending on the severity, I could be on antibiotic seven days to a month. At this point it looks like closer to the shorter end. I hope to be able to attend school while on the antibiotics.
Well I have a fever of 100.2. The rule with a port is if you have a fever you have to go to the E.R. That is because an accessed port is an open source to your blood making you vulnerable to blood infections. Fevers are very unusual for me with other sicknesses. We are debating whether to go to the local hospital to draw labs or go straight to UCSF. My digestive system is definitely not happy. I am also weak. My port is more sore than it has been with some burning... I don't know what is happening. I don't know if I have a gut/liver infection or port infection or just a virus. This is very frustrating. Keep a look out for me. I am 90�ure I will end up in-patient. Hopefully peds. :/ Unless you hear otherwise, assume I am at UCSF. :(, Christamae
Sunday, January 17, 2010 8:30 PM CST I hit the ground running on Monday. It was a crazy, hectic week.
I definitely have a more challenging semester. Let me break down the week.
Sunday I got in bed late because Danielle and mom got back so late from choir practice. That was rough. I have to get up at 5:15 every day. Well, Monday through Thursday (that’s when I go to school). I think I got maybe five hours of sleep on those days.
Monday came way too early. My first class was Social Problems in the U.S. The professor was a bit scatter-brained and kept diving off into unrelated topics and personal stories. Then I found out that a third of the semester is covering things I learned in Intro to Sociology. Hmmm…Next it was off to Storytelling. This teacher was the first professor I talked to at MJC. I like her. Storytelling is somewhat like some competitive speech events. The major difference is that you don’t need to recite the story word for word. You can paraphrase. You are also supposed to slightly adjust depending on the audience or as the book said “you build the story together with the audience.” I took Storytelling for pleasure (I think it fulfills the Arts GE, too) to regain some of the enjoyment I had in competitive speech. On the one hand I am excited at the prospect of performing and enveloping myself in characters and the story. On the other hand I am worried. What if I can’t be understood? What if I get too out of breath? What if I need suctioned or the ventilator? It is a definite risk. The teacher is definitely on my side. She is very supportive. That makes things tons easier. I really hope it goes well. Right after class I headed off to the infusion clinic for my IV change. I had some good nurses this time. It takes about three hours round trip.
Tuesday is a long day. I am in class from 9:35-3:45-four classes. The first class is Human Development. I started this class last semester. It is one of my incompletes. I don’t have to take the first few tests so that will temporarily lighten my load. After that I have Intro to Mythology (fulfills a GE). Now this teacher is going to be insightful and challenging. She has certainly been around. She even used to work at the Smithsonian! I am thinking of taking this class Pass/Fail. This would decrease pressure to make the grade. After that class I go to Experience Teaching Psychology-Abnormal Psychology. This is my other incomplete. I really like this teacher. My next class is with her, too. The final class is Personal Development. I took this class for personal enrichment. I also figure that things in this class will be helpful in counseling others. At this point I knew I would need to drop a class. The decision was easy peasy- Social Problems in the U.S.
So Wednesday I slept until a little after 7:00. Storytelling was good. Then home to do homework.
Thursday was another long day. I had several assignments. But my books weren’t scanned. In fact I wasn’t able to get my books until Thursday. So I was a little behind.
I didn’t get to start my homework until Saturday. Good thing it’s a three-day weekend. Especially since I don’t work on Sunday.
Today was a good Stake Conference. Elder Ballard couldn’t come but there were some great talks. Right now I am a bit worried. I haven't really been able to take off the vent today. I have been really congested with mucus coming out around my trach and down my chest. Gross. I also have an elevated temperature (99.5) and feel blah. It would really suck to get sick right after restarting school.
Thanks for everything!
Sunday, January 10, 2010 8:29 PM CST I have had very up down days. I had a really discouraged period that prevented me from updating. I hope I didn’t worry anyone. I so appreciate your support! I think I will start with the most recent news and work my way back.
School starts Monday, as in tomorrow. A bit nervous but ready to rev the mind. I am happy that I got my dispersement of funds cause with the current situation that could've prevented attendance. My schedule is a bit demanding. It is likely that I will need to drop something or at least take a class pass/fail. The problem is that I have to take the classes I took incompletes in last semester because of my health issues-or I will have F’s on my transcript! Right now they are ‘I’ for incomplete. I am going to need to do some serious evaluations of the coarse load and demands of each class. My schedule at this moment is Social Problems in the U.S., Storytelling, Intro to World Mythology, Personal Adjustment AND the two incompletes-Human Development through the Lifespan and Experience teaching Psychology-Abnormal Psychology.
We finally got to see The Princess and the Frog…I loved it! Awesome animation. Magical music. Superb storyline. I hope Disney makes more of these gems.
I have been feeling pretty isolated and lonely. It is really hard for me to get out and about and connect. Just when I had hit the very bottom of lonely, I had a week with a flurry of friends. First I had a visitor over. Then later in the week I was able to visit with Cam while I waited for my GI appointment. I facebook chatted with my really close friend from Competitive Speech days, Katrina. And in the past week I also facebook chatted with Shayna (cousin) and Jenn Delozier (one of the old PICU fab 4 nurses-TN now). Just what I needed.
The GI appointment itself went well. My TPN is going better. I am adjusting. I have symptoms of a bladder infection and my port was weeping a bit (!) so I am starting a round of Keflex. We are going to put my oral potassium in my TPN. The stuff burns and makes me nauseas. The worry of a blood infection is always in the back of my mind but the huge increase in functionality makes it worth it.
Of course, some people/situations certainly increase the stress. Like this inept access nurse. First he didn't use proper sterile technique-no mask & he didn't scrub long enough or in the correct pattern. And when he accessed he didn't stabilize the port. And he left me completely exposed to the world which multiple people saw as they sauntered across the room to see him. He only used one tegaderm which came completely up-opening the site which then got water dumped down it. This led to a frantic search by my parents for my old port access supplies-they recleaned around the needle and recovered. Fortunately the girl I saw the last two times was good and nice-got me a room temporarily for privacy.
It's a good thing we saved the old supplies. Cause now that I am an adult and don't have CCS we have things denied left and right. We have to be admitted to the hospital every time for port access which all told takes about three hours, instead of having VNA come to the house. We have to buy gauze and cotton tipped applicators and Aquacell ($-g-tube dressing). My trachs are always "back ordered". Instead of getting two a month we have been getting one every 2-3 months. Some things are flat out denied. The pulse-ox was taken when I turned 21 "because she's 21." Most recently my oxygen concentrator was taken. Part of that was my pulmonologist (adult) fault. They said he didn't do the paperwork right-he said he signed it and then told us not to make waves with the company. If Dr. McQuitty was still working (retired peds) he wouldn't have let that happen. Fortunately, we dug an old rent to own concentrator from Oklahoma days from storage. And then there is the TOBI. The vital lung med I need for congestion flares. It is approved for only Cystic Fibrosis patients. It doesn't matter that the pseudomonis growth that CF patients have is exactly the same thing I am colonized with. Now I have to hope my body will rally on its own or wait until it gets super bad for the hospital. More lung damage=less talking. I am tired of not having the right disease. I just don’t fit in the right slot so I can’t get the support. If I had the 'right' Muscular Dystrophy I would qualify for the fabulous GHPP insurance. They laughed at us-no appeals process, it takes an act of Congress (literally) to add a new disease (never done). I just wish I had access to those programs. Why does an age or a term exclude from support? Is there really that big a difference between 18 and 19, 20 and 21?
I was thinking a lot about these things because there has been talk of the need to transition me to adult services. My impression was that this stay was definitely to be my last in the PICU. I had such a nightmare of an experience when I was in adult ICU for just a handful of days. I really don’t think adult services are prepared to deal with pediatric conditions. When the current doctors went to school, people with my type of Muscular Dystrophy were dying as adolescents. They don’t know how to navigate insurance approvals or the magic words. And adult hospital policies and equipment certainly don’t fit my needs. After expressing some worries to Dr. Soifer, he gave me some relieving news. As the head of the PICU and a Vice Chair of the hospital, he told me that until I am confident that a team of adults can care for me, I can stay in the PICU. I will try very hard to express needs and work with adults to develop a transition.
I will get the opportunity to express my opinion and concerns. I am going to be part of an Adult Transition study.
We had little Robby over for 10 days after Christmas. He is always fun to have around. It’s fun to live the magic of Christmas through the eyes of a little kid. We made the traditional Christmas cookies while he was here. The best thing about Christmas was that I was spot on with everyone’s gifts. It was great to see the reactions.
Next week I have a pretty cool happening. A church leader, M. Russell Ballard is coming to our Stake Conference (meeting of all members from wards-individual congregations-in an area) and will be speaking. Pretty awesome. I am crossing my fingers that a temple trip will be in my near future. I haven't been since May. Laura promised we could go again in January.
Okay. I think that pretty much covers it.
Thanks for all the support! Please sign the guestbook.
-Christamae
Tuesday, January 5, 2010 7:53 PM CST I have had a pretty gross day. I woke up with a horrible headache and very nauseas. It took me the better part of the morning to recover. I haven't felt too swift the rest of the day.
When I got my port needle changed the bandage was dirty. Between that and feeling gross I am worried about getting a port infection...
More news tomorrow.
Monday, January 4, 2010 6:22 PM CST I have a big update coming! Good things and frustrating things. Will update Tuesday!! Thanks for your support.
Christamae
Wednesday, December 23, 2009 10:55 PM CST Sorry I am late. Things have been really busy.
First off, my appointment with GI. The appointment went well. Betsy is great. She is going to lower the calories, concentrate it, and I can run it 18 hours-not 24. I didn't run the TPN until I got home for fear of never making it to the hospital. I have definitely felt an energy difference.
Most of my time has been spent in a whirlwind of holiday activities. Watching Christmas carols, decorating the tree, shopping, studying the story of Christ's birth. I especially love A Muppet Christmas Carol. We even had carolers (friends).
I did have a little scare yesterday. My temperature was 99.3. Anything over 100 and I have to go to the hospital. My temp is down so my body was just stressed from all the running.
It is hard to believe that Christmas is only two days away! Happy Holidays to all of you! Thanks for making mine brighter.
Monday, December 14, 2009 3:58 PM CST I am getting frustrated. I am getting waaaay too many calories and fluid. I am going to the bathroom literally every hour to hour and a half. I entered the hospital at 53 lbs and today I am 63. My ideal weight is 64-68. Anything more than that and my breathing is a lot more labored. Then I enter the chubby stage. Finding fitting clothes is hard enough now. My feet are a little swollen. And I am junkier and a lot more out of breath. I am also still really bloated. My food is only on 15. But they concentrated the formula and bloating is a common problem with that. Or is it because my liver is already unhappy and swollen. Or is some vitamin off. I can say I do have more energy...I just thought all my GI discomfort would be gone. But I have that and I am peeing all the time and I have the risks of the TPN & port. I keep having this paranoid suspicion that I am going to land in the hospital with a massive blood infection right before Christmas. Yuck. That is the only holiday that I haven't spent in the hospital.
We had a little party for Little Robert's birthday. He was really happy with it.
We are just now putting up the tree and decorations. The music is playing and it's finally beginning to feel a lot like Christmas.
I haven't seen The Princess and the Frog, yet. :( I am really excited to see this! A return to the classic Disney movie.
Tomorrow I go to a local outpatient chemotherapy clinic to get some labs drawn and my port needle changed. No, I don't need chemo, thank goodness. They are just the most accustomed and comfortable with ports.
Thursday I have a clinic appointment in San Francisco to discuss the TPN and assess the labs. I really hope we can get my TPN where I am not going to the bathroom constantly.
Still have quite a few traditions to complete-decorating cookies, seeing the lights on Christmas Tree Lane, and watching an assortment of specials. A Muppet Christmas Carol is a must!
A big thanks and hug for all your support! You brighten my holidays!
Christamae
Wednesday, December 9, 2009 6:33 PM CST Home and the whole hospital stay
I just got home last night.
I got home last night.
Surgery went very well. Cam was able to visit with me. I didn't have Chico but the lady I had for anesthesia was very good. Every request was like, ‘sure, we can do that’ or ‘no problem.’ They even let me drive into the surgery room in my wheelchair with Dad, knocked me out with propofal through my IV (I didn’t want gas) in my wheelchair, had Dad move me to the surgery table, did the surgery, and had Dad put me back in my wheelchair before I woke up. The last thing I remember is being in my wheelchair with the propofal burning a bit. According to Dad, Dr. Lee was on top of things. He had all sorts of things ready for propping. My trach was in the way since the initial placement is in the neck. There was some talk of intubating-the typical procedure when a trach is in the way. But intubation is extremely difficult with me. So they simply stitched the trach to my neck with a couple stitches. Worked out very well. The surgery went quickly and smoothly. Sore but not terrible. I was amazed that upon waking up I didn’t have my major mucusy lungs or horrific stomach nausea.
I was extraordinarily grateful to be in the PICU. I saw familiar faces. And met some new favorites. I particularly liked Alanna. She was my nurse four of the six days. Everyone in the PICU was so nice and concerned and accommodating. Dad was able to always be with me. Things were tons less stressful with just me and Dad.
What was hard was visiting adult ICU 9 where so many bad things happened. There is a tentative plan to transfer me to the adult floor. I went up to adult ICU to talk about all the things that went wrong with the last admission. And all the things that went wrong. And the accommodations I will need. It was good to discuss things. Still not quite sure what will happen regarding hospital admissions. The lady that is in charge of coordinating the possible transfer (Robin Kramer I think) said that they still haven't heard from the head honcho nurse or anyone else...She said that they were going to take some PICU people upstairs to talk. She said she is still unsure what will happen. Evidently there has been some talk of me staying in peds. It does happen (rarely) but typically with severely developmentally disabled adults who are completely dependent on caregivers. I think the goal is me going to adults but they need to agree to some things and put it in writing. She said at this moment we would check in peds first and if they were full or unwilling then I would go to adults. I am going to follow this closely.
I started my TPN last Wednesday. Things are going well so far. They drew lotsa blood work at first in order to find the right balance of nutrients…My home TPN was started yesterday. It has a nice backpack. Everything is up and running.
I am back in the city for a GI appointment on Thursday, December 17, 12:30 appointment. Thanks for all your support!
Saturday, December 5, 2009 7:53 PM CST I got ahold of a computer so I came to update,
Surgery went very well. Cam was able to visit with me. I didn't have Chico but the lady I had was very good. They let me drive into the room in my wheelchair, knocked me out with propofal, had Dad move me to the surgery table, did the surgery, and had Dad put me back in my wheelchair before I woke up. Worked out very well. Sore but not terrible. And I don't have anesthesia stomach.
What was hard was visiting adult ICU 9 where so many bad things happened. It was good to discuss things. I think we are going to make a note for my chart. But I was extremely stressed and had a major panic attack. Last night I also had horrible leg craps.
I am extraordinarily grateful to be in the PICU.
I started my TPN, Things are going well so far. They have been drawing lotsa blood work. Hopefully home Tuesday.
Monday, November 30, 2009 3:44 PM CST Got the surgery date. Thursday at 11:30-be there at 9:30. Wednesday at 10:45 I have an ultrasound appointment. I think they are going to take a look at the veins in my neck and chest. Dr. Lee mentioned that he was worried about going in and facing blockages. If anyone can get it in a fetal surgeon can. My weight is down to 57 lbs. Originally I was 68. I have lost most of that in the last 14 days. Mom said my stomach is actually pulled in. I just really feel I need the stability of the port and TPN. I am still not able to get my food where it should be. It is going to take a lot of experimenting to find the formula (since they all flunked already) and I want that security. It’s as good as it’s going to get surgery wise with Dr. Lee surgeon, Chico for anesthesia, peds surgery, PICU.
Hopefully things will go smoothly.
We celebrated Thanksgiving on Friday. It was nice to see family. Amber’s son, Rocklynn is a cutie. He always looks so serious. Like a baby professor. I mostly listened to all the conversations. It is a little bit hard to see everyone eating and not be able to join in. I did get in some good visiting. We also played ‘Would You Rather…’ again. The questions are always interesting. Here is one, “Would you rather ride (pedal) a giant adult size big wheel from Florida to Maine or have to hippity-hop across Florida” the challenges weren’t nearly as fun. We were all a bit puzzled until we saw that last time all the challenge cards were under the “do it” category. We are going to make up some good ones. We reminisced. And listened to an old tape I have of Danielle, Shayna, and I singing Christmas songs. It isn’t our best tape. The last tape we did was really good. All the songs had at least two part harmony. And we have our own harmony to Silent Night. I really wish I could find a copy of that tape. But the tape did have me singing, “The Melody Within” which was basically ‘my song to sing.’ Miss that... I am really excited about Disney's The Princess and the Frog!! A return to the classic cartoon...
Thank you for all your support and kindness! It is truly appreciated.
Christamae
Monday, November 23, 2009 6:39 PM CST The surgery appointment went well. Dr. Lee is a great guy. He said he would do it but expressed concern about even the ability to place a line because of contractures and the size of my veins. He said it will probably mean a more obvious scar on my neck rather than the last which is hidden in the crease of my neck. He warned that the possibility exists that he could go in and not be able to get anything. There is a bit of confusion on if it will be a port or broviac. Betsy prefers broviac. I think the consensus is whatever is easiest. Anesthesia is my main concern. Dr. Lee is really leaning towards general because he said he has needles in major veins and if I get confused and flinch or move it could be bad. But he said we could talk it over with anesthesia. They are going to recruit Chico (my fav'). I am really hoping we can work something out because general is so bad for my lungs (probably take 72 hours just to calm the irritation permanent damage) and makes me so nauseas. I mean maybe I could have enough versed to relax but still be aware?? I am sure that Dr. Lee and Chico will do it as noninvasively as possible. Betsy was there and we talked for a bit. She went over all the risks (liver damage, infections, etc) and the care and maintenance involved. I already knew about those. And I said, I don't feel like I have a choice and I don't want to feel like crap all the time. I think they just wanted to be sure we knew the risks. Especially since I guess Dr. Soifer has been greatly discouraging Betsy (he doesn't like lines). Dr. Soifer and I go way back to my back surgery days. I like him a lot and I know he is just concerned. I am 90 ure that they are going to put me in the PICU. That's what it sounded like. They did bring in a special social worker that is going to spend some time with us talking about my needs and advocate for us with adults. They said we need to write a special plan on file that details everything so if I need admitted (ie line infection) then everything will be good to go and not traumatic. That would be nice. Much easier. I will still miss the calmer more soothing atmosphere and distractions but I will feel safe, secure, and not traumatized. They changed the date to the week after Thanksgiving (hopefully). Dr. Lee has to look at his schedule. Betsy wasn't going to be on.
I am a bit concerned because I have been super congested. Coughing up big plugs. The last thing I need is a delay to surgery because of pneumonia. I don't think I have it. I think it might be an overgrowth of one of my colonized bacteria. Oh the joys of a trach. But the only meds that I am not allergic to treat the overgrowths are IV. All the congestion hasn't been very fun either.
There is also a question on if my fundoplication has slipped. I definitely refluxed at least twice because it was distinctly the color of my food. This would be very bad. It could account for the congestion. But fixing a fundo is a major operation and not easy.
To top it all off I have been having episodes of excruciating leg cramps. It's pretty pathetic for pain to reduce you to saying 'I can't take it!' Let me tell you oral meds take a loooong time to work. Thank goodness for my loving Dad's willingness to sit with me and rub my legs and back while the med takes effect. I am thankful for those pain meds.
This week we have my brother Robert's son visiting. We have more family coming Friday-when we will celebrate Thanksgiving.
I wanted to give a big thank you to all of you! Your messages have really lifted my spirits. You are too kind :). You have touched my heart. Thank you.
I will post as soon as I know the surgery date.
Christamae
Monday, November 16, 2009 7:13 PM CST Well, we got the appointment with the surgeon, Dr. Lee. It is this Wednesday at 1:30. He will evaluate my body position and limitations and decide the best way to proceed. I am crossing all my fingers and toes that my magical plan will become the plan. Dr. Lee wants to do the surgery the week of Thanksgiving. Mom is not too keen on that idea. She was mentioning do the surgery, bulk up with TPN for a couple days and readmit for food. I say this is the best chance to be admitted to the PICU with an all peds team and there is no way I am jeapordizing that. Plus I have depleted my reserves and am now losing weight. I weighed yesterday and had lost 2 lbs-in 2 days.
Then on the way home from an appointment I was in a car accident. I was thrown so far forward that I almost fell out of my wheelchair. I couldn’t reach my control to tip back. My leg was pinned so I couldn’t ring. I could barely breathe. I was wedged against my control. Then Dad got out of the car to examine the other car. I had no way to tell him I was in desperate need. Fortunately his examination wasn’t very long. It appears that Dad got caught on the hubcap of a parked vehicle. Without the control and abductor there is no doubt in my mind that I would’ve been thrown from my chair. Needless to say it was a bit traumatic.
I am feeling pretty crummy with low energy. I spend my days feeling generally gross and doing things that involve minimal effort. I am tired of feeling crappy. Very discouraged. Things have not looked this bad in a long time… I feel like I am just limping along. I am constantly nauseas and retching. Unless something drastically changes then I am ready to put my digestion on complete rest and go to complete IV nutrition. I can’t take it anymore. Feeling like I have the flu constantly. No energy!
That is about all. The important news will come Thursday. Surgery.
Sunday, November 8, 2009 3:21 PM CST Well things are not going well. I am still having definite digestive issues. Nothing seems to be working. Yesterday I went on straight 7UP all day. I just could not tolerate food. It is very discouraging. It seems that a hospital visit is inevitable.
I had an appointment with my GI doctor. She thinks I need a hospital visit to get things under control. The key is that I need surgery to get the port. Now it is possible to install a port with dissociative anesthesia and sedation. If you get the right surgeons. I am fortunate that the excellent surgeon, Dr. Lee, told me that he would perform any other sutgeries that I might need. He is not the stereotypical surgeon. Dr. Lee is very friendly, charismatic, and a joker. He is also extremely excellent at what he does. And willing to be versatile and listen. I think he would be willing to make adaptations such as performing surgery in my wheelchair with the modified anesthesia. If I could get the anesthesiologist, Chico, then I would have my super team. Another advantage I have is that I am close to the head honcho of pediatrics, Dr. Soifer. My GI doctor is also peds as is Dr. Lee. I am hoping that would give me enough sway to stay in the PICU. I had such an awful, horrible, horrendous time in adults.
Something definitely has to be done. Right now I am running some concoction of 7UP, crackers, corn syrup, other additives and one can of food. It is tolerable. But I am going to have to turn it down soon. :/
To add even more drama, Danielle, has the swine flu. She is at the end of it. But she has felt pretty crummy. I have been blessed that I haven't caught it.
Nothing really going on. I am feeling pretty crummy with low energy. I spend my days feeling generally gross and doing things that involve minimal effort.
Thank you so much for all your support and kind words.
Monday, November 2, 2009 7:05 PM CST I will write a full follow up after my appointment with my GI doctor Tuesday. In a short summary-things are horrible. I have the paradoxical feeling of nausea/bloating and hunger. My bowel has no control. I just feel completely gross. I just really felt that I could not keep the commitment of school-especially considering the surgery and withdrew. I am tired of feeling crappy. Very discouraged.
Full update and hospital plans will be posted Tuesday after my appointment
Saturday, October 24, 2009 3:37 PM CDT Things are definitely not going well. Wednesday was spent at the hospital. I don't remember the first two hours of the day. I just remember being in my wheelchair with everyone anxiously talking to me. Evidently I was making strange movements, pleading for help, and didn't know my parents, brother, sister, etc. I even named my old address. Anyway, I was off to the ER. Turns out I had dangerously low potassium and was really dehydrated. Had to have an oral infusion of potassium and IV infusion of water. Amazing what a difference it made. Before that my breathing was bad, too. Lots of congestion. Couldn't stay off the ventilator because of congestion...well turns out it was all dehydration. The doctors told me to rest and take special care of hydration in the future...Unfortunately my body didn't recover as fast or fully as we first thought. I was cloud head for days. Couldn’t think straight. No energy. The worst thing was that I had very limited memory of the four days before the dehydration. The time period of the material for 1/2 of the test…I did horrific on that test. I made a D. In my whole life I have never made a D on a test. And it lowered my overall grade from a 91 to a 77. Disgraceful.
I might end up in the hospital with some surgery. My GI doctor is suggesting that. It appears that my digestion is shutting down. It has been in a precarious state since 2003. We finally found a formula that my body liked in 2006. Before this I was on supplemental IV nutrition through a port-a-cath (semi-permanent IV under the skin accessed with a special needle). That was removed July 2006. Unfortunately the formula my body loved was taken off the market in April. No combination has been successful. Right now I am trying to avoid being admitted for a port-a-cath placement for total parental nutrition (tpn). Essentially IV food...Really bad timing-how about summer, body??? I already scheduled an intake session with Voc Rehab, too, so I could transfer to a university...I am sure this will look swell...
I feel like I am just limping along. I am constantly nauseas and retching. I am trying to struggle to November 2nd and my GI appointment. Unless something drastically changes by then I am ready to put my digestion on complete rest and go to complete IV nutrition. I can’t take it anymore. Feeling like I have the flu constantly. Going from cycles of a week of constipation to three days of no control. Just to deal with that I am switching my food off in favor of 7UP for several hour cycles.
Things have not looked this bad in a long time…
:,{
Monday, October 12, 2009 5:11 PM CDT The theme of the past week can be summed up with the phrase-unhappy stomach.
I have been battling tummy troubles. I came home feeling totally blec on Tuesday. I actually came home early from school and layed down and took a nap. I felt so bad that I stayed home Wednesday and slept 11 hours! Both are unheard of for me. There was lots of retching and gagging and nausea and yuck.
I managed to pull it together to go to school on Thursday. That is my long day.
One good thing happened. I have made very few close friendships since I moved to Ceres. Especially with people my age. Lately I have become more determined to make an effort to build friendships. After all it’s hard to make friends when you don’t talk to anyone and zoom straight in and straight out of class. There is one girl I have talked to a bit. She has a nice personality and, at least medically, we have a lot in common. She has an ‘invisible’ disability (fibromyalgia-lotsa pain issues). I made the gesture with a note and now we are going to start visiting at my house.
Back to the stomach-not happy. My new formula has decided it likes staying in my body instead of properly exiting. It was very determined. So determined that I felt really gross the whole weekend. Missed the movies. Missed church.
When things finally started up, well technically down, it had some nice side effects. With things properly moving-I could breathe better! I had so much more room and less resistance. It is amazing how much small things make a big difference. Unfortunately, it seems things are either all go or all stop. Concern for dehydration yielded an all stop on treatment and thus movement.
Now am back to bloated blec...Things haven't been right since I switched from the Peptanex...
I hope I can get my stomach happy again. Then my breathing will be happier, too. Both would make me happy.
It's really discouraging when your body hates you and is on constant revolt :/
Monday, October 5, 2009 10:15 PM CDT It has been a rough couple weeks. That is why I haven't posted. Too overwhelmed and discouraged.
The good thing was that I made a 98 on my Pharmacology of Abused Substances class. Well technically it was a 95 because there was a 3 point curve.
I can no longer take Provigil. Provigil was an awesome med for me. It's the non-stimulant stay awake med. It worked really well for me and it didn't jack up my heartrate or make me jittery or nauseas. But about two weeks ago I started having some really scary side effects. Had to stop. But without the Provigil I am really suffering. I cannot stay awake. I am back to resorting to nodoze (caffeine). I think I have the right dose 1/3 pill-about 66 mg. But it really raises my heartrate which makes it hard to breathe and I feel generally gross and it doesn't work as well. Anyway, the whole thing is kinda devastating.
Last Thursday I had a horrible incidence at school. If Danielle hadn't have been there (her aid called in that morning) I seriously think I would have passed out. I was on my way to my next class. I got a little ahead of Dad so I stopped. He hadn't come up so I turned around. Scanned the hall. No Dad. Saw Danielle and went to ask her. She didn't know where he was. Boom-panic. I was already out of breath cause my heart rate was so high. Here I was gasping for air and freaking. Thinking Dad is injured or in trouble. Not being able to breathe. Trying to think what I could do. Could Danielle instruct someone on how to put the vent on? Could I make it long enough for Robert to come from home? About that time Dad walked up. He had 'told' Danielle that he was going to stop by the teacher's office to get permission for her to be in class and that he would meet us by the class. Too bad she didn't hear. And that is NOT supposed to be done. We cannot be separated. I shudder to think what would have happened if I had needed suctioned. We had an in depth discussion at home. I reemphasized my weakness and need and constant borderline status. I think we have a better understanding. Though now when I ring with no response I get scared a lot faster. Yuck. Totally spotlighted my extreme vulnerability. Like I needed any more reminders.
I have been going to a peer to peer group for school-the psychosocial rehab class. Speaking of that class I am really disappointed in my psychosocial rehab class. It is pretty focused on the certification you get after taking specific courses to work as a case manager. I thought it would focus more on the theories and approaches to that genre.... It is a bit awkward and I think they are a bit us against them in the presentation. A general attitude of doctors being the bad guy. But it's for school. Smaller group-which I like. Got a call that the Friday class was too small and was going to be integrated into the Saturday morning class. I already saw this could be a problem because of Danielle and I wasn't very happy being flung in with a bunch of new people. But I figured I had to give it a try. People started sharing their story. First I have an issue that you are strictly timed-5 minutes. Anyway there was a recovering alcoholic (relevant), a woman with abandonment and trust issues (it's a bit of a stretch but I think if severe enough there are conditions), a man with disorganized schizophrenia (definitely relevant), -about this time Danielle called having to go to the bathroom. The plan was for Robert to come up to stay with me while Dad took care of Danielle. Well then the next lady tells "her story." This lady makes me nervous. She is always threatening me. You're just a troublemaker I bet and I should teach you a lesson. Better watch out, tell you what, I'll get you, etc. I think it is teasing but still...and then this story...She goes on to brag how she tied her husband to the bed and beat him severely. Very proud. Cause he was a drunk and controlling. What mental illness is that??? How is that relevant to NAMI? I can understand restraining to get away but to brag about a violent act...Well I was done (I had to pee anyway). So now this lady really makes me nervous...Do you think I am overreacting?
My birthday was spent studying for a test I have...tomorrow..that I should be studying for... we have a little delayed celebration. We are all going to see Toy Story 1 & 2 in 3D this weekend.
Oh and all afternoon today I have been retching, dry heaving, horrible cramps. I took Zofran and some other meds. But I have felt pretty worthless and awful until about an hour ago. Now I can finally study for my test... tomorrow!
Anyway, I desperately hope the next week is better. Tomorrow's test might be a good judge so I should study...
Your support and prayers mean a lot!! Many thanks!
Monday, September 21, 2009 3:35 PM CDT I finally figured out how to import the pictures!
Before:
The hair-approximately 11 inches:
Close up and newly waxed eyebrows:
More right after the fact pictures:
The new make up look:
Julianne and Lilly- New mommy
Danielle, Julianne, and I
I took my first test last week...and got it back. The teacher built in 3 extra credit questions. I got a 105. Good and I should be happy. I am oomphed that I missed those two!
I had an appointment at UCSF with my neurologist. Peds neurologist. (yay!) He is really good. A bit of an expert in Muscular Dystrophy. He prescribed me some meds to try. One works on relaxing the muscles and will hopefully help my leg cramps which are getting worse. I am nervous because these types of drugs are known to make it harder to breathe. That is something I can't afford...Another drug is for nerve pain. It definitely causes sleepiness so he said to take it before bed. The third prescription is Versed. I am hoping it will help my panic attacks. They are pretty awful. I know Versed works great for me because I have had it in the hospital. It is also fast and doesn't hang around in your system making you sleepy. The best thing about the appointment was seeing Cam. We met up right away and were able to have a pretty lengthy visit. I am hopeful that the meds will help some chronic issues.
That's about it for now. I have a test in Pharmacology of Abused Substances Thursday...Bit nervous...
Thanks for all your support-it means a lot!
Monday, September 7, 2009 10:41 PM CDT **I finally have the pictures from my haircut. I am briefly delaying until I can get them uploaded. First test today...
I have been having increasing problems with pain. I am not quite sure what is going on. I am especially having problems with cramping in my back and legs. I am taking Dilaudid more frequently. I am a bit worried about this.
In some good news...I think I found my food! Vivonex. I tried it back in 2003 but they have changed the formulation. My gut seems pretty happy with it. No nausea. Some amount of bloating and gas. But not all the time. And gas medicine does the trick. Things move through. I am relieved. I was getting really concerned.
I am dealing with further compromised breathing. My last sickness knocked some strength out of me. It mostly affects me in the morning where I have to repeatedly stop my treatments, gasping for breath, and put on the vent. Dad also ends up bagging me in the bathroom. Inevitably, this brings up a big plug. I just don't have the same strength or reserves since my last sickness.
I am really liking my classes. They are all interesting, engaging, and things related to my future career goal. Each has a different approach. Psychsocial Rehab is very personable. It is intuitive and we tend to apply the material to our own experiences and share. Human Development is a plethora of information. I have about 50 pages of reading every class. I find it all very interesting. The teacher is a good lecturer and integrates interesting experiments into her lectures. Pharmacology of Abused Substances is interesting. I am extremely ignorant of that whole world. That knowledge will be essential if I want to counsel troubled youth. I am liking being a TA for Lee.
The school year did start out a bit dramatically. The air conditioner in the red van broke. So we had to shuffle around the big car. Fortunately, my brother did all the driving. But because Dad was working on the car my books didn't get scanned. So I have been catching up on reading.
After much drama and delay, my cousin Amber gave birth via Cesearean to a healthy baby boy, Rocklyn Diego M.
As for all of you- thank you! Your support means a lot!
Monday, August 31, 2009 6:19 PM CDT Well, the last week has been a bit mixed.
I didn't get to go to the temple. I am sad that I missed it but more sad for the reason why. I will just say that Laura's family could use prayers.
Friday I had an appointment to evaluate my vocal chords. I was really excited. I figured I would finally know what was wrong that caused my voice to be so wimpy. And why I couldn't talk on the vent. Or why I couldn't sing. Then I could fix it. I had a feeling that I would have to do the unpleasant bronchoscopy. Complete with the unpleasant numbing spray. It reminded me of procedures done when I was in the hospital the first time. I concentrated on not freaking out. They had a video screen so I could see my airway. I saw my vocal chords and everything. After going above the trach they went below my trach which involved taking my trach out. I hate trach changes. But I did it. I was so looking forward to getting a good voice. The doctors fully expected to see stenosis or vocal chord paralysis. I was waiting to be told what procedure could fix me. They were all obviously surprised that the scan showed no abnormalities. On the one hand this is good...but I felt more devastated. Now there was nothing I could do to help. Ever. My fate was sealed. They said that. Basically my body has to put tremendous force just to get a voice. I have to push and strain to get a voice. This is due to my severe muscle weakness. Also I have an unusually high amount of secretions that block and interfere. There is nothing to be done. They did show a device to help block the stretched stoma...still a depressing day...but I am in conflict...shouldn't I be happy nothing is wrong?
Today was good-first day of school. I think I will really like my first class-Psychosocial Rehab. It seems inline with the kind of career I am looking at. American Political Thought looks interesting and I know the teacher's style. Tomorrow I have Human Development, Pharmacology of Abused Substances, and I am being a teacher's aid for Lee's Abnormal Psychology class.
That's about all for now. I really love reading all your messages! And so appreciate your prayers!
Monday, August 24, 2009 7:10 PM CDT I am going to start with Wednesday because it was such a great day. It was something of a day of indulgence. First was a haircut. I haven’t had my hair cut in a long time. Part of it was that I didn’t want to bother with it but in the back of my mind I thought that if I let it grow out I could give it to locks of love. Yesterday I cut off two eleven-inch ponytails. That is enough for 1/3 or 1/6 of a wig. Then I proceeded to cut my now short hair, really short. Mom tried desperately to dissuade me-saying I would ‘look like a boy’ but I love it! It looks spunky and fits my personality. Everyone said I shouldn't and I was nervous but I took the plunge. It was a bit of a shock at first. But the more I look, the more I love. I will like it even more when the bangs grow out some. One of the great things is that the hair stays framed around my face. One of my favorite parts is the ‘v’ shape in front of my ear. Then I got my eyebrows waxed…for the first time. I have always been a bit scared to do it (wimp!). And being plucked takes forever. Plus I want a new look. And I have had major surgeries. I do have Dilaudid if it is horrid. Those were some thoughts going through my head. So I took the plunge. It was nothing. Just like ripping of a few band aids. I didn’t even flinch. Definitely more sheek. For the next decision I can thank Danielle. Mom and I have this long-standing continuous argument about my make up. She always wants to put it on me and I don’t want to wear it. Danielle helped me realize that is because I don’t like my make up. I want a more natural, subtler look. So I went to our make up supplier site, took some quizzes, and wrote down some products. Then when I was at the mall I went to the product counter and tried the look. Awesome! The rest of the day was spent flitting into stores looking for clothes (zilch) and looking for hair accessories (a few finds). Overall an awesome day. I have not felt that carefree in forever. Usually when my parents spend money on me I feel guilty and think there are tons of worthier things the money could be spent on. I determined not to do that.
I am feeling good with the earlier to bed and earlier to rise routine. I just hope that homework loads don't make it a no sleep routine.
I have increased the frequency of my pain med. It is helping. I am sleepier but I think that is starting to balance out. Hopefully, it will be balanced by the time school starts...next week!
I am still having major food problems. Right now I am kinda mixing and matching Tolerex and Complete. It is not feeling good, however. I have the dry mouth from the Tolerex. The different fullness issues from both. And I can't keep my rate up. I am trying the Vivonex as soon as it gets here. I am getting more and more concerned that I will end up on TPN/lipids :/
Friday we went shopping for a few clothes at old navy. Usually a fit is such a find that I will buy it. If a really cute thing kinda fits I will get it-but then I will end up not wearing it. A lot of my clothes aren’t really my style. But I get them because they fit. It is quite a conundrum. I like a casual, fun look. I found one shirt with nerd humor (Write On!-I am a writer) that I really liked. The other two t-shirts are nice and the sweaters are super comfy. Overall they were more in line with what I like.
Aunt Cyndi and Kaitlin came to visit over the weekend. That was nice.
It was also wonderful to be at church. It has been over a month.
Today my friend Julianne was here for a visit. :)! Thursday I have a temple trip. :)! Friday I have an appointment to investigate why my voice is so weak.
Thanks for all your support! I will post pics as soon as Mom uploads them.
Monday, August 17, 2009 7:54 PM CDT I've got lotsa stuff going on. Some changes and excitement.
First some good news. The problem with my medi-cal card and the medication was solved. Longs pharmacy was bought by CVS. When CVS did the change over there was a quirk in the computer. Everything got settled.
I did change my food formula. It is a called Complete. It is actually made from 'real' food. Except Benefiber was added. This may prove to be my undoing. Benefiber and my body do not get along. I have been having some of the same symptoms-mainly that there is a rock in my stomach. I took some medicine today to clear everything out. That way I can start fresh and assess again. As far as I know there is only one more formula to try...I am getting more and more concerned that I will end up on TPN/lipids :/
I decided I am going to get my hair cut. One of the reasons I have been growing my hair out is so I can give it to locks of love. I am going to get a pixie style cut and buy lots of cute hair accessories. I am a little bit worried about looking like a boy...but,hey, my hair grows fast.
I continue to have pain issues. I may need to raise the frequency/strength of my pain medicine :/
With school starting in just two weeks (!) we all have a lot of adjusting. All of Danielle and I's increased medical needs makes things even more complicated. Mom made a detailed schedule outlining when things need to happen. Hopefully this will prevent sleep deprivation and lower stress. We always have issues with getting to bed. Danielle and I both have early classes. It is essential that something is worked out so everyone gets what they need (especially) Dad. To prepare our bodies, we started the schedule today. I got up at 6:45 (during school it will be 5:45 or 5:25-we'll switch to this tomorrow). The plan is to be done and in bed between ten and ten thirty. This involves starting the nighttime care a little before nine...everything takes sooo long. I actually feel good and think I might like the new hours of operation.
This week is going to be very busy as we cram in all the trips and activities needed to start school. Tomorrow I am getting blood work done to check my potassium. Wednesday I am getting the haircut. Thursday I am going shopping for clothes. I hope this will be fruitful with minimal frustration. I am so hard to fit. Everything needs some modification. For example, every shirt needs hemmed...Wish me luck!
Today I started the process of reentering Voc Rehab. It has been so long that I have to start all over-down to getting rechosen. My little MJC test and confidence booster has gone well. I love school and want a career. I hope my endeavors with Voc Rehab will yield more promising results this time.
Lately I have been showered with an abundance of love and support from all of you! Too many to count have sent postal cards and e-cards. I would like to send an extra special thanks to Anna S for the itunes card (music soothes me and relieves my stress) and Jamie Webb for the personalized pillowcase (it matches my bed colors and I collect Tinkerbelle). I feel abundantly blessed. I appreciate everything! Thank you for your support and prayers! It means the world to me!
Monday, August 10, 2009 6:38 PM CDT It's been a bit of a crazy week.
My bowel settled out. But now it is more like it was in my last entry. Seems like it's "all or nothing at all." I am going to try a different formula. I am through trying to make the Tolerex work...Next!
I am dealing with pain problems. My hip/lower back has been throbbing constantly for the past five days-even while in bed. I already know from a previous appointment that I have old, arthritic hips. But the source of this pain feels more like it is originating from my pelvis, where the rods in my back are anchored. Hardware from back surgery is typically removed due to potential long term issues. I am worried that something has slipped or a nerve is being compressed.
I just averted a medical crisis. II am on a plethora of medications. One of my best medications is Pulmozyme. It makes a huge difference in my breathing. I take it twice a day. I can feel a decline in my breathing after just one missed dose. Before my hospitalization Danielle started using my medicine in anticipation of her getting a new prescription. Then when we went to the hospital with the craziness and exchange of vehicles, my Pulmozyme, a refridgerated medicine, was ruined. To make a long story short, we were about to run out. In fact Danielle and I were both going to run out as we had been sharing hers-waiting for mine to refill and her prescription to be changed from once a day to twice a day. The plan was to lower my dose but I was really concerned. Even in top form my body declines with a missed dose. There was one solution. Buy my prescription. But we just can't afford that. However, I remembered the church-and sure enough they agreed to pay, and were ready to cut the check yesterday. Against all odds, after denial, insurance agreed to fill my prescription early. Still it is a great comfort to know that if this problem resurfaces the church will take care of me.
We had our first major outing Saturday-a friend's baby shower. She is the most adorable pregnant lady! Her mom used to be a professional caterer so she definitely knows how to get it done. She has also made a considerable effort ro make things accessible-even building a ramp. I think the shower was a fun time for Dad, too. Laura was at the shower so Dad was ushered off to be 'with the guys...'
One thing we learned from that outing was the change in the routine. I do not have the reserves in my breathing and can't independently clear plugs as well. I have to stop my morning treatments multiple times to take a breathing break on the ventilator and cough up junk. I don't know if this is my new normal. My new medicines add about 45 minutes to my routine. I seem to have a lot less energy. I think this is my food and hopefully it will improve with the new formula...
This morning I had more medical madness when the pharmacy denied the refill of my Pulmicort because my card was expired (?). As far as I know this only happens when you die...and I am pretty sure I am alive. Dad had to go down to the very busy Medi-cal office to get some answers. According to Medi-cal the card is fine and Medi-cal has no idea why the pharmacy is having problems. Medi-cal even issued a temporary card. After all this the pharmacy still won't fill my prescription. So that fight will continue tomorrow.
Now for some good news. I was given a pretty good chunk of change ($3000 a semester) in grant money for school. The actual cost for fees and materials will definitely not be that much. One of the things I want to get are some badly needed clothes. That makes me :)
I hope the medical madness calms and I can adjust to my new routine.
Thank you so much for your support and love! I eagerly check my page first thing and throughout the day for your encouraging messages of kindness.
Monday, August 3, 2009 4:00 PM CDT Things have been tough since I got home. I have such a regimen of breathing treatments that I feel like I just go from treatment to treatment. Today I took a 1.25 dose of Xopenex in the morning to stretch out the time between treatments. That way I have more than thirty minutes between the first two treatments. When I first get up I have to take five different breathing treatments- Xopenex, Atrovent, Pulmicort, Hypertonic Saline, and Pulmozyme. Takes about two hours. I really feel that the hypertonic saline is making a big difference in my ability to get the junk from my chest. But since I have been home I haven't really been able to stay off the vent. I don't know if this is permanent or that I can build myself back up. Or it could be that the pressure and strain from my bowel is the issue. I am really constipated and having trouble moving things. There is so much back pressure that my pump alarms occlusion and Dad has trouble pushing meds...I finally got things really moving this morning and I have been able to be off the vent. This makes me hopeful that once my bowel settles out my breathing stamina will follow suit.
I am having a lot of problems with my energy level in general. I have always been able to just go and function on 6-7 hours of sleep. Now I am tired with 9. I guess my body could still be recovering from the virus. I am more inclined to think my new formula is the issue. Especially with all the issues with my bowel. The doctor wants me to play around a little more before wI give up on it.
I learned a couple not so great things when I was in the hospital. For one, the bacteria that my lungs have been colonized with-pseudomonis, has become resistant to TOBI. This has always been how I treat it...and I can already take so few antibiotics. I also learned that I have a new colonization-Achromobacter xylosoxidans. It is a very rare bacteria usually found in immunocompromised people. It is also very resistant to antibiotics and can only be treated with IV antibiotics. This means that a flare up would land me in the hospital. I also learned that my blood is alkaline. This can have serious consequences. But in order to fix it I will need to lower my ventilator settings. I am very hesitant to do this. The absolute worst feeling in the world is not being able to breathe...A lot to take in and yet more complications.
Poor Dad is exhausted. I am having trouble waking him up at night.
I really hope my lungs will return to their previous strength. And that my bowel will start to behave itself...
Thank you so much for all your support! It means so much! It puts a smile on my face and brightens my day. I have enjoyed my cards, too. To send me one- Christamae Zimpel 3071 Malik Ave Ceres, CA 95307... You guys are awesome!!
Wednesday, July 29, 2009 12:27 We are home...had to stay in adults. I hope I didn't jump the gun again. Probably won't be in bed until 3:00 cause of set up & Danielle going first.
My hand has a big ol' bruise where Sergeant Leeda missed. I told her the vein was gone & it hurt a lot & to stop. I am an adult and can stop treatment right? And she was like you're panicking (uh, no), you're not breathing, breathe through it (the vent was on), then when dad tried to interpret she threatened to make him leave (I cried). Leeda was a no listening don't question me or make requests nurse. Yuck.
Good things- the rest of the nurses I had were very nice, there was a window & TV, they actually found a nurse call button I could push, the first night charge nurse -Ed- moved a patient so Danielle and I could be side by side (originally she was on the 9th floor), the nurses were attentive & usually within sight, RT's were excellent & pretty good at reading lips
Bad- Leeda, a bit dismal, intimidating, new rules that will to be a constant battle which will add an element of uncertainty, the bed, the moaning patient who got 0 compassion or communication from his nurse, disregard for privacy, humongous leads, no more resources like FRR, laundry, family house, computer, movies, music, etc., one infiltrated IV, 2 blood sticks, another IV, 2 finger sticks-my poor hands
Battles- the first was in the ER prior to admittance when the Dr said I would have to use their vent. I straight up said I wouldn't stay in the hospital on their vent, the leave for the shift change (they just closed the door), the visiting hours (after seeing the lifting & all Dad's work & my emotional meltdowns when he had to leave me alone they wrote an exception form-acute care needs). These will all be things that hang over my head.
There it is. Still have a lot more recovery to do.
Sunday, July 26, 2009 1:15 PM CDT I am backsliding fast. Junk is sooo tight. My vent is maxing out on back pressure which means it can't push harder. And sometimes the pressure is so high that the air goes around my trach out my stoma. I am dumping down saline-helped a little. My secretions might be changing color, too. I am much worse-worse then when first admitted. We are headed back to the hospital. Not sure where I will be admitted...
Saturday, July 25, 2009 6:10 PM CDT I am home but things are not going well. A little back tracking. I got aggressive treatments at the hospital. They were all given on my ventilator. I got the vest 4x a day which really knocks junk loose. I got the hypertonic saline 2x a day. Hypertonic saline isn't very pleasant to take. It is pretty darn uncomfortable as it induces lots of coughing. But I could really tell a difference with it. My Atrovent was switched to a nebulizer which I feel works a lot better so I switched it for home, too. I was coughing up tons of secretions. Thick and plentiful. Mucus leaking out above and below the cuff.
The doctors felt that the vest was critical enough that we couldn't leave the hospital until it was at our house. At 5:00 last night it arrived. But upon wearily arriving at home we discovered the vest wasn't working. We were hoping that it just needed a code entered. The representative came by this morning. He was very knowledgeable and helpful-but the vest is broken. And I won't get another one until Tuesday. Plus, my hypertonic saline won't be available until Monday. So all the treatments that were helping are gone. I know they will be back but I am so worried that I will lose the ground I have made.
I have been able to come off the vent some today. But given the amount of junk yesterday I am worried that the loose junk is tightening down and I will be back to critical before my treatment plan gets in place.
Last night something terrifying and horrifying happened. I was really worried when we got home that I would have problems waking Mom and Dad given how exhausted they were. By the time everything was set up for them for bed it was 4 AM. Last night the vent came off in bed. Never happened before. On a healthy basis it is difficult to breathe laying down. My ventilator is alarming, I have my secondary alarm constantly beeping, and I am ringing like crazy. No one is coming. I am out of breath and scared. I can't get the vent back on. No one is coming. It took Dad 5 minutes to arrive and I was in trouble when he finally got there. If I would've needed suctioned or had a plug moving I don't know what would have happened. And if I would've been in a deep sleep and not ringing or beeping the phone...scary stuff.
I wanted to stay in the hospital until Monday (hypertonic saline) and given the state of the vest...I am just so concerned.
I can only hope things turn out okay...
Still quite sick,
Christamae
If you would like to send mail:
3071 Malik Ave Ceres, CA 95307
Tuesday, July 21, 2009 6:36 PM CDT Sorry for the delay, things have been crazy. i have the only bedside computer and don't know how long i will have it. I did get admitted to my happy surprise the ER doctor said i should be in the PICU and got me there. i was happy about that. first night of the stay-got in bed like at 3 AMthen got tons of saline dumped in which i hate and bagged but i was willing to try anything- and deep suctiooned which is painful. first treatment plan was the vest. it was the weekend. dr. soifer-the head of PICU took me under his wing and looks out for me-was there. when there was a delay in my vest he got right on it. yesterday things got kicked into a higher gear. they added prednisone for 5 days for inflammation. today they added hypertonic saline treatments. last night things on the right lung really started loosening up. good but exhausting. last night was discouraging. night is hard. i can't move at all, i am stuck until dad can get here. really hard. i get really hot. and last night i was hurting. feelling really stressed. this morning i just lost it emotionally. i hate being dependent on the vent. no talking for the last 12 days. and this constant concern of just how much my lungs have deteeriorated. Vest is really good at getting up junk, hypertonic saline helped with the left lung tightness. when i do go home i will still be recovering. oh, there is some disagreement if i have pneumonia. dr. soifer said it best,"it's christamae's x-ray so of course we can't tell";) in any case, going from 1-2 hours of need to all day is acute, so i am not going anywhere until this junk gets moving and have a vest at home and i can be off the vent, cuff down, for at least an hour. hopefully before the end of the week.
you can send me notes from the hospital website PICU bed 9
Recovering,
Christamae
Saturday, July 18, 2009 1:51 PM CDT We are leaving for the hospital as soon as everything is packed. I feel worse. The congestion is heavy and tight. I can't finish my treatments. For the brief periods off the vent (bathroom) I have to take many brief shallow breaths. I can't breathe deeply. On the vent I am having to initiate more breaths. My lungs feel heavy and burn. So now I get to go to a new place with all new people when I can't talk.
:,,( Christamae
Friday, July 17, 2009 6:57 PM CDT Still sick here. Most of the virus symptoms are gone but the junk has settled into an x-ray confirmed pneumonia. We decided to take the second plan of him calling in an antibiotic and waiting the weekend (nothing happens on the weekend) to see an improvement. If I am still pretty sick we will admit me Monday. to the adult ICU-I have always gone to the PICU. I am scared to death! I don't know anyone in adult! All new nurses! Doctors! And Respiratory Techs! And the peds RT's were always complaining 'about the way they do things in adults.'
I will have to retrain everyone! Even if I don't have to go this time, what about the next time I need the hospital...I hate change!!!! I hate pneumonia! :,,( Christamae
Monday, July 13, 2009 I am still really sick. I haven't been off the vent for longer than to take a treatment in five days. This really bothers me. I can't talk on the vent. Every day I wear it all day is more time for my muscles to weaken...which could permanently change how much I depend on the vent. The last thing in the world that I want healthwise is to be stuck all day on the vent, unable to speak and unable to communicate except with a select few. Every time I breath (with the vent) I can feel the junk gurgling around. I cough and cough and cough and sometimes a piece will come up. But there is stuff that is just stuck! My chest gets tight. I am also concerned because before all the junk was on the right but now I feel some on the left. And to top it all off our pediatrician is gone all week and his temporary replacement doesn't take our insurance (medi-cal). Mom e-mailed our pulmonologist hoping he would call in some x-rays locally. I would really like to see what my lungs look like. How those look will decide our next course of action...Danielle is also pretty sick...We may end up in the hospital...
:( Christamae
Friday, July 10, 2009 2:41 PM CDT I am really sick. I can't take off the vent. I can't take my treatments without stopping to bag. I can't go to the bathroom without being bagged. My chest and back hurt from coughing. My throat hurts. I am nauseas. Very little energy. And I have a fever. This scares me. I always worry when I have to use the vent a lot that it will stay that way. Yuck. :(
Your prayers are appreciated.
Monday, July 6, 2009 7:27 PM CDT 4th of July was great! Earlier in the week we went to get fireworks. The 4th has always been pretty important to our family. One year in Oklahoma we went to a special fireworks factory. Fireworks in California are made quite a bit differently than fireworks in Oklahoma. Fireworks in Oklahoma incorporate a lot of mortar like shots. I miss that. Anyway we went to our favorite stand from last year-armed with our evaluation-and stocked up. Aunt Cyndi, Courtney, and Kaitlin arrived and the gabbing began.
I was pretty involved and alert. Thanks in part to Provigil. Provigil is my new favorite medicine. Provigil is a med that helps you stay awake. It is not addictive, is not a stimulant, and is not harmful to your body. It was originally designed for doctors doing shift work and truckers. However, it is being used increasingly by people taking sedating medication. I have numerous medication that makes me sleepy. This is annoying, frustrating, and in my case dangerous. When I fall asleep off the ventilator my oxygen drops quickly-86, 75- as low as 54, 46. Bad. This had become a real point of contention between me and my parents. At a certain point I could no longer recognize I was tired. For many complicated reasons I had a really hard time with this sleepy problem. Provigil is proving to be extremely helpful.
I am worried about Grandma. She has all the symptoms of a heart blockage. But her not so smart I-ignore-my-patients-concerns cardiologist basically blew her off and wouldn’t even see her after she went to the emergency room! He did call in a heart med which was totally inappropriate with deadly warnings and conflicts because of other conditions. Like do not take this medication if you are on a medication for Diabetes. We are done with this ignorance. Grandma made an appointment with the doctor who has done all her heart caths. Unfortunately, he doesn’t have an appointment open until August. At this point Grandma is just limping along. She is resting. We have put her on oxygen at night. We have an oxygen concentrator from an old company that got purchased. I am getting really worried. I don’t think I could handle anything happening to Grandma… I am eagerly awaiting the appointment in August.
Around here we are dealing with budget cuts. We have been struggling with cash cuts and cuts in services. All of our SSI checks were cut. The services that caregivers get paid for were further limited by IHSS (In Home Support Services). Some prescriptions have been cut frome the approved list. Most recently we were informed of service cuts: opthamology and dental were on the list…It is a current trial.
We are still debating about summer fun—partly because of the above. Muir Woods is an almost definite. The San Francisco garden Museum is also high on the list. This week we are going to make definitive, firm plans.
Thank you, thank you, thank you! :) You guys really raise me up.
Monday, June 29, 2009 10:10 PM CDT Not a lot going on. But this week we are going to make some summer fun plans. I want to go to the museums in San Francisco park, the space center in Oakland with the special videos, and Monterey Bay Aquarium.
It is hard to believe that Independence Day is Saturday! That will be fun! I have always really enjoyed 4th of July. When I was younger and in Oklahoma it was always a big affair at the farm. All the family would get together. All day fireworks were going. And at night everyone pooled fireworks for an impressive show. It's not the same here. But we are always sure to set off some fireworks.
Martie Loftin and her son, Kent, both came for another visit. They will be back this week. And my friend, Laurie Frazier, is coming Wednesday.
I am excited for Harry Potter! :)
On a more serious note, Grandma has been having some health issues. We are all crossing our fingers that it isn't anything serious.
We have started watching the old series Voyager from the beginning. It is our summer series.
Thanks for coming by! I promise things won't keep being boring! Stick with me-I treasure your support and prayers!
Tuesday, June 23, 2009 7:54 PM CDT There really hasn't been very much going on.
I am really enjoying my new control. It had gotten where I could barely drive. On the last trip to UCSF I was able to drive all the way from our parking spot to the hospital without stopping.
We saw Disney/Pixar Up. Actually I am not sure I liked it. It wasn't what I expected...I want to see it again before I completely write it off.
I have been playing on the gaming site. Danielle set up an account. We enjoy playing versions of Battleship and Connect Four.
We are trying to decide what fun thing we want to do this summer...
I think the issue with my parents may be resolving. Thank you for your parayers!
I am starting to have difficulty with my food under the bowel category. I really hope this resolves...
Hopefully I will have some more exciting news soon...
Thank you for your prayers. I cannot express what your support and caring means to me! :)
Tuesday, June 16, 2009 1:29 PM CDT Hello faithful followers!
Not too much in the way of news.
I did have my GJ tube replaced. I remember the first time I did this the staff was very concerned as it violated so many rules-including no anesthesia. That is a vast contrast to this last appointment. Everyone knows me and my routine. It is 'normal.' This was a routine replacement because, for the first time, the tube lasted for its full life scale. The tube change itself went well. Then the treat...a great visit with Cam! I always enjoy seeing her.
I am adjusting to my new control. I really like it. It is definitely what I needed.
Not too much else going on-just reading and playing computer games.
Actually I am having a conflict with my parents. I would appreciate prayers that this can be resolved and both sides will be open. It is causing a lot of stress and tension.
This morning has been a bit crazy. We tried to add cream of wheat to my food and my food pump didn't like it. And I had to put on the vent and was coughing up lots of junk. I hope the congestion was just a bad morning and not the start of something more...
That's about all for this week.
Lots of gratitude for all your support! It really helps!
Sunday, June 7, 2009 5:18 PM CDT Sorry it's been so long! I can say that it is not due to sickness but some excellent books! I am a voracious reader and really get into my reading.
First an update on my food. We are slowly moving forward on the Tolerex. I have to add some real food to this food like oil. I am hoping that this is the one. My old food is already technically expired and almost gone...after that...I don't even want to think about what we would have to go through for the food then.
We saw the Lion King on Broadway!! It was awesome, incredible, amazing, ubelievable, superb, magical, and every other positive adjective. It far exceeded my expectations-and I was expecting a good show. The puppetry was great. In the opening scene all the animals walked down through the audience to the stage. That was one of my favorite scenes. Simba and Mufasa had really good comraderie. My other favorite scene involved Rafiki doing the 'it doesn't matter it is in the past' stick hit followed by Mufasa speaking from the sky. In the play Mufasa's face was projected across the sky. I am so grateful that we were able to have the privelage of seeing this marvelous production.
On Monday we had the six month check up with the Pulmonologist (lung doctor). I am thankful that we were able to find a replacement for the irreplacable pediatric Dr. McQuitty. I miss him...but Dr. Claman has impressed me and seems to be genuine. He always takes all the time we need. This is usually about an hour. It feels unrushed which means a lot. And he is definitely open to our wishes.
On Friday I had a wheelchair appointment to get my new control. I have been struggling with the ability to drive for some time now. As my muscles get weaker it becomes more and more difficult for me to push the throttle. It had gotten to the point of me having to repeatedly stop and rest. It took a lot of tedious work but my control is in position. I am working on learning to drive this control. It is extraordinarily sensitive. Full speed involves a movement of less than an inch.
So there's my major events.
I am grateful for all of you. You are awesome! It is great to know that people care.
Thursday, May 28, 2009 8:26 PM CDT Updated for Real! Well this nice big detailed update that somehow got deleted so this is try number two
My new food failed. The nutrients weren’t being absorbed. I had no energy and no spit.I felt generally gross and nauseas. So now I am trying Tolerex. I am hoping this one works.
Last Thursday was a bad day. Starting that evening I was really junky. I kept having to be suctioned over and over. And I was coughing constantly. I had mucus dripping down my chest and out around the trach. The worst thing was that the junk just wouldn’t come up! It took me two hours to get through my evening treatments because I kept having to put the vent on. As I was laying down the junk finally came up. Rough evening/night.
Friday we went and saw Wolverine. It was okay. I liked Star Trek a lot better.
Sunday I was asked to comment on getting through trials and how I cope. I don’t remember what I said exactly. I basically turned it over to the Spirit. I do remember mentioning about focusing on eternity and how short this life is, the great rewards, the strength of the temple, and the constant strength/love/want of success from Heavenly Father and Christ.
Monday we went to the mall. Surprise for me. I was a bit irritated because no one told me. We stopped in Icing so Danielle could get her ears repierced. Hmmm. Mom had mentioned to me that I should get mine done. I asked if this idea still appealed to her and she answered with a confident yes. On a whim I decided to try one more time. Me and ear piercing have quite a history. My first try was age eight. I was really excited to get my ears pierced. I went through all the healing and excitedly started wearing all kinds of earrings. Around Christmas I wore these plastic Santa earrings. Shortly after my ears got infected and grew in. Turns out I could only wear hypoallergenic earrings. About a year later I got my ears repierced. I was still in the stud phase when I had to have surgery. By the time I was calm enough to put the studs back in, the holes had grown in. I was pretty frustrated with pierced ears and threw in the towel. But when prom came around I decided that pierced ears would be attractive. Things were going great with these ears. Until I had my big bad back surgery. Keeping my ears pierced was the least of my worries. After that I decided that pierced ears and I were just not meant to be. Then Monday I decided to give it a shot. Maybe 4th time is the charm. I chose some really pretty 14k gold studs that are whitish/bluish and sparkle. Then I started my earring collection with four pairs. I am pleasantly surprised with myself.
Yesterday I was able to go to the temple. :)
Today a lady from church and her son came over to visit. That was a pleasant surprise. It turns out that she wants to make it a regular affair.
Thank you for your patiemce and compassion. I love all your support.
Thursday, May 28, 2009 8:26 PM CDT Updated for Real! Well this nice big detailed update that somehow got deleted so this is try number two
My new food failed. The nutrients weren’t being absorbed. I had no energy and no spit.I felt generally gross and nauseas. So now I am trying Tolerex. I am hoping this one works.
Last Thursday was a bad day. Starting that evening I was really junky. I kept having to be suctioned over and over. And I was coughing constantly. I had mucus dripping down my chest and out around the trach. The worst thing was that the junk just wouldn’t come up! It took me two hours to get through my evening treatments because I kept having to put the vent on. As I was laying down the junk finally came up. Rough evening/night.
Friday we went and saw Wolverine. It was okay. I liked Star Trek a lot better.
Sunday I was asked to comment on getting through trials and how I cope. I don’t remember what I said exactly. I basically turned it over to the Spirit. I do remember mentioning about focusing on eternity and how short this life is, the great rewards, the strength of the temple, and the constant strength/love/want of success from Heavenly Father and Christ.
Monday we went to the mall. Surprise for me. I was a bit irritated because no one told me. We stopped in Icing so Danielle could get her ears repierced. Hmmm. Mom had mentioned to me that I should get mine done. I asked if this idea still appealed to her and she answered with a confident yes. On a whim I decided to try one more time. Me and ear piercing have quite a history. My first try was age eight. I was really excited to get my ears pierced. I went through all the healing and excitedly started wearing all kinds of earrings. Around Christmas I wore these plastic Santa earrings. Shortly after my ears got infected and grew in. Turns out I could only wear hypoallergenic earrings. About a year later I got my ears repierced. I was still in the stud phase when I had to have surgery. By the time I was calm enough to put the studs back in, the holes had grown in. I was pretty frustrated with pierced ears and threw in the towel. But when prom came around I decided that pierced ears would be attractive. Things were going great with these ears. Until I had my big bad back surgery. Keeping my ears pierced was the least of my worries. After that I decided that pierced ears and I were just not meant to be. Then Monday I decided to give it a shot. Maybe 4th time is the charm. I chose some really pretty 14k gold studs that are whitish/bluish and sparkle. Then I started my earring collection with four pairs. I am pleasantly surprised with myself.
Yesterday I was able to go to the temple. :)
Today a lady from church and her son came over to visit. That was a pleasant surprise. It turns out that she wants to make it a regular affair.
Thank you for your patiemce and compassion. I love all your support.
Tuesday, May 19, 2009 7:16 PM CDT Just got back from the temple.
The Tuesday, May 26, was somehow erased I will repost Thursday.
-Christamae
Tuesday, May 19, 2009 7:16 PM CDT Shayna's visit was great! Shayna is the girl in the middle of the photo at the top. Things always feel more complete when she is around. Wednesday was a little activity day. First the family went to Tahoe Joe's for a special lunch. I was pleasantly surprised that I was able to join in the conversation. After lunch, we all went to see Star Trek...Wow! and Awesome! are words that come to mind. I really had no expectations going into the movie and didn't even really want to see it...But I am certainly glad I watched Star Trek. It is probably the best movie I have seen all year. Everything about it is well done- storyline, character development, special effects, acting, etc. Definitely recommend.
Friday we were planning on going to Muir Woods. But there was a mini emergency when one of my essential meds was denied a refill...on its last pill. We had to get that figured out. It was just a paperwork mistake.
Sadly Shayna is back in Utah. I hope she visits again soon.
Today I voted on measures about balancing the budget. Some are good-some not so much. I always make sure to vote even if an out come seems like a 'sure thing.' People fought and died for that right. I always try to do my civic duty.
Nothing too exciting for this week. Maybe we'll see Wolverine. I will definitely do some reading. But next week I am going to the temple and seeing Lion King. :)
Thanks for all your support...You are awesome!
-Christamae
Monday, May 11, 2009 6:09 PM CDT This past week has mostly been a relaxin' week.
I read the Belgariad series by David Eddings and three other books. I love to read!
Thursday I had a transfer appointment with UOP. The basic gist of the appointment was to learn about transfer requirements and procedures to UOP. She was really impressed with my qualifications. At one point she said I was a shoo in. I was doubtful in my mind until she said, "And that's not just talk, I am in charge of transfers." I felt pretty darn good after that!
Right now my cousin Shayna is visiting. :) It is always nice to see her. She is a nice fit and always clicks in like she has always been here. Robert visited on Mother's Day. He brought little Robert. Robert even came to church-I think it was his gift to Mom. Little Robby is well-behaved and a cutie. He had such a crush on Shayna. :)
Remember how the red van was smacked on the hit and run? Well, today we got the insurance check for... $2,842! That is a big chunk more than we spent fixing it and a big surprise.
Yesterday was Mother's Day. A most important day to honor a most important job. Here is a poem I wrote:
Motherhood Dedicated to my Mom May 14, 2006
A noble calling The grandest on earth Such importance Tremendous worth
Service: incalculable Love: immeasurable Sacrifice: untold Meaning: infinite
What is this great occupation? What does it pay?
Why, Motherhood!
Pays in hugs, smiles, laughter, and kind words Reimburses with memories and achievements of the child
There is no greater mission No greater gift No greater love No life with more importance Then that of a Mother
Thanks for everything! You're awesome!
Monday, May 4, 2009 3:09 PM CDT School is out!!
I made a 100.6 n Psychology (extra credit). Yay! I am going to be a TA-teacher’s aid- in Abnormal Psychology for that teacher. She is an excellent, engaging teacher. My official Sociology grade is not posted. But I got my essay back (drumroll) 100 So I would have to make a 48 on the final to get less than an A. So my A in Sociology is pretty much guaranteed. And the teacher asked me to come speak to his next class about writing the paper and to read sections. He is also going to give it to the students as a model paper :) I am going to do my best to have a full time schedule next semester.
I was pretty leisurely Thursday. I dove into some books. I have been avoiding long books because I knew it could interfere with my studying.
Friday I had a wheelchair appointment. These are always early risers (4:00 AM) due to the long process of getting everyone ready and the long drive. The superb service is worth it. But the day is exhausting. This appointment was to redo my cushion. This was an intimidating prospect. One position change often results in the need to adjust everything. It is precise work. Betsy dissected my old cushion. She is good at her art. Just from looking at the cushion she was able to identify my balance leg and new contractures. She did her best to copy the old cushion. Only three further adjustments to the new cushion were needed. I am impressed that she even found them because she could not mark it (I was sitting on it)-she made the comment about putting on x-ray eyes. With the added height of new foam, I had to add a little elevation to my footplates. No holes were left so we just added some more foam. A little headrest adjustment and added foam to the elbow cushion and voila-completion. We left a little before 8:00. Betsy always stays late for us.
I am happy to report that my spinal seizures/leg cramps have greatly decreased with the new cushion. I still have some (always a few when I get up) but not the two hour agony like before.
Saturday I went to get some webkinz. There was a sale because of the webkinz day celebration. I got the hedgehog and rhino. There was a church talent show. Grandma was performing. Danielle couldn’t go because of the end of school crunch and mom was working on a lesson. But I went with Dad. I enjoyed the talent show. There were some great comedy acts and Emma Stone did great on the piano. I am glad I went.
Church was good, as always. Mom taught Sunday school and did a good job. I made an appointment to renew my temple recommend-17th at 3:30. Gotta have that recommend. It’s the ticket to my happy place!
That’s about all for this week.
Thank you so very much for your support! Your messages are a great pick me up. It is awesome to know how many people care. Your support means more than you know. :)
Sunday, April 26, 2009 6:57 PM CDT This week has had some craziness.
First, a good thing-I got my Sociology paper done and turned in. Sigh of relief. I am pretty happy with it. I hope the teacher feels the same way as it is 75 f my grade.
I did get to go to the temple! It was an awesome trip. I have really missed the temple. Nothing can compare to that energy. There are some very special people on those days that I really feel connected with. They go out of the way to make me feel comfortable. During this particular session I had a very nice experience. I had a time period of absolutely positively no stress/anxiety! It was wonderful! I am really stressed out. I hope I can work on capturing that calmness on my own.
We have had a couple medical oops. My pharmacy had the wrong form of my pain med. We eventually found another place where I could get it BUT I missed several doses and started into withdrawals. The key ingredient in my g-tube skin balm is also unavailable until Tuesday. Friday after counseling I picked up my pain med from Walgreens. It was funny-there was a sign that said, Welcome Longs Drugs customers. Dad gave me two little webkinz. As a result of the pain, withdrawals, and Dilaudid I was not worth much studying.
I have been having quite a bit of trouble with muscle cramps. They are a symptom of the spinal myoclonus (spinal seizures). I am thinking that I need to see my neurologist for a possible treatment. I can’t keep dealing with the pain and I don’t want to keep dishing out Dilaudid.
Saturday we had some visitors. The main reason for the visit was Amber’s pregnancy. She is 4 ½ months pregnant with a boy and engaged to Dave. At 32 it looks like she is finally settling down. Everyone is excited about the baby!! Aunt Ramona, Aunt Cyndi, Kaitlin, and Dave were also here. Overall it was a nice visit.
Saturday night was crazy. I was getting all settled in bed when there was this big crash. An investigation turned up a hit and run on the red van. Someone smashed into the parked red van so hard that it moved to the next driveway. There is a huge dent. The exhaust pipe is bent and the gas tank is cracked. The car that hit us didn’t fair too well. Parts of that car were strewn around and leaking radiator fluid. We called the police who tracked down the driver. So we will get some money to help with damages but not likely enough. This could also really complicate finals week as leaking gas tank means no driving. So arunning around we will go.
Finals this week. More worried because of the car situation. I haven’t had much of an opportunity to study…
Monday, April 20, 2009 1:02 PM CDT Sorry for the lack of updates...I hope I didn't lose my faithful followers!
First a good thing. I received an award! The award was for living the spirit of the ADA and being a good citizen. The awards ceremony was very nice and tastefully done. I received a pretty cool plaque. What meant more to me was that my Psychology teacher nominated me and showed me the letter. I really like her so the mutual admiration was the best.
My pain has not been going so smoothly. I have been in more and more pain. Every morning I have leg cramps. Sometimes these take my breath away. Not fun. It is so frustrating-what is Dilaudid worthy pain? So I am always analyzing…I just wish it could be simple.
A couple weeks ago Mom had a wheelchair appointment to get her new chair. While we were there we met this really cool father/son. I had a lot of physical similarities to the son and he had a great personality. The Dad remembered my name to facebook and… they are my religion! Small world. My new control has come in and I will get an appointment soon. That will be awesome. It is extremely difficult to drive now-almost an insurmountable task. I am also going to get a new seat cushion which will hopefully help my pain.
Easter was good. We were able to go to church. I tried to contemplate the Savior’s great sacrifice. I prayed and pondered. And I read the event from all four gospels. The Easter Bunny left little gifts. I tried to ponder the Savior’s sacrifice and be connected to the true reason for the season. We were watching Little Robert so that added another element.
The big source of stress has been my sociology paper. It is 75 f our grade. Before I could get started on the writing I had to do these interviews. I have been scrambling the last little bit. Thus the absence of e-mail. I have also been studying for my Psychology essay exam. Took it. 100 :)
Friday I had to go to this Asian art museum for Danielle’s school assignment. I couldn’t even try to enjoy it because I was trying to work on my essay. Then the monks did this hour long purification pounding, chanting thing that gave me headache. So I couldn’t really enjoy it.
I have been getting quite a bit of blood suctioned from my trach. This is very unusual for me. We are concerned that I might have an infection. I am wondering if I have granulation tissue. My voice has been weaker and my upper airway closing off more so that makes sense. I really need a bronchoscopy to see what is going on.
This Thursday I am definitely going to the temple! I am really excited!!
This weekend Aunt Ramona and Amber are visiting. Amber is pregnant :) and Aunt Ramona is going all out. Grandma is helping. It will be great to visit and see the pregnant.
A couple weeks ago we had General Conference. I had to mention this because it is one of my favorite things every year. I love the talks and the Spirit behind them.
On the home sprint for school. Two weeks left. Two finals…The discussion over vacation is starting. One thing is already decided-Lion King on Broadway on May 30-Woohoo!
Those are the highlights.
I so appreciate every message and prayer!! A big thanks who all who take time to brighten my day!
Monday, April 6, 2009 10:45 PM CDT *UPDATE COMING SOON!
I actually have quite a bit of news. Some pretty cool stuff. I have been madly studying for my essay final and working on my Sociology paper. Don't give up on me! :)
Sorry for the missed update!
It is getting down to the wire for school. I have a paper to write for sociology. I just got my interviews done (!). The way the grounded theory works is that you have to analyze the responses and then get information to back it up. I also have an essay test coming up in psychology. And then finals.
We did have little Robby over to watch. He is a cutie. He has endless energy, too.
We just had General Conference which was great!! And Grandma is back!!!
I have been having more problems with pain and have had to take my breakthrough pain med. I think part of it is that my wheelchair seat is worn thin.
I have that awards ceremony Thursday and will let you know how it goes.
Thanks for all the support and prayers!
Wednesday, March 25, 2009 10:40 PM CDT Hey everyone! Thanks for stopping by. Sorry for the late update.
I was feeling pretty gross earlier this week. We attempted to switch me over to Peptamine. That was a failure. By the second day of half Peptanex/Peptamine I was constantly nauseaus. I was already having to turn my food down. Mom did a lot of research and found two new formulas, including one that appears similar to Peptanex. I am crossing my fingers and saying my prayers that one of these formulas will make my stomach happy.
In good news, I received a letter from MJC about an award. I am invited to a ceremony to present me with a framed certificate acknowledging me as a good citizen and person who lives the spirit of the ADA.
Grandma is visiting my Aunts in Pacifica and I miss her like crazy! She is back Sunday. Hooray!
With extra credit averaged in I made a 96 on my Sociology test.
Temple trip fell through :(.
That's about all the news for now.
Thanks for visiting and your kind words and prayers.
Sunday, March 15, 2009 7:40 PM CDT Sorry for the length between updates…I have been stressin’.
I was madly studying. I had my Sociology midterm. Everything seemed to evaporate from my mind so I was freaking. I reread everything and made outlines and did what I should have been doing all semester. I think it paid off as the test only took me about thirty minutes.
I haven’t been to the temple since the first week in January. I miss it! I have a trip planned Friday. I really hope it happens.
After a lot of drama, debate, and heartache I did drop the class. I felt terribly guilty but in the end I felt it was a waste of my time and too stressful.
I am dealing with a couple other stresses. The control on my wheelchair is broken. I have to leave it on because the switch is very finicky about initializing.
It’s official. My food is gone. No more Petanex DT. I am really stressed about this. I remember all the nausea and problems. I can see myself taking huge steps backward with horrible nausea and even back on IV nutrition…
I hope that next week will have less stresses!
Monday, March 2, 2009 10:57 PM CST Those flu like symptoms Grandma had was a flu and it has swept through the house. Dad has had a horrible flu virus. He got it Friday so I will start there. He was vomiting for thirty minute time variables. He was so weak he was unsure he could lift. Soon after he got me up he had to throw up. About a minute after he left I needed suctioned. I was able to breathe around it for the twenty minutes he was gone. Really stressful though. Mom was in bed but can’t get up without Dad’s help. I kept telling Dad he should get mom up. Dad was only back for about twenty minutes when he had to make a bathroom run. Shortly after this I am overcome by a feeling of not being able to breathe. I need the vent-now! I am attached to a treatment so I cannot move. I am ringing frantically. I can hear Dad barfing. Mom is yelling for Grandma to suction me. But I don’t need suctioned. Grandma is trying to suction me. I push past to Mom and Dad’s bedroom. Mom is stuck in bed but starts to give instructions on turning on the vent. I am still gasping for breath and desperate for air. At this point Dad emerges from the bathroom and I get the vent. I cough up probably ten really thick sticky plugs. If I get a plug stuck then I can’t expand my lungs. Dad gets Mom up who is panicking. Dad can barely walk and terribly weak. He is not sure if he can get Danielle out of bed. He goes back to throw up. Meanwhile my bladder is yelling at me and I really have to pee. Desperate for help Mom makes an emergency call to Laura. Bless her heart, she rushes over. As soon as Dad finishes barfing, he manages to take me to the bathroom. Then gets Danielle up. As soon as Laura arrives Dad collapses in bed. Danielle is also complaining of nausea and throws up slightly. Danielle is also dealing with a sore throat and hoarse voice. Our pediatrician calls in an antibiotic and refills my Zofran. Both Dad and Danielle take it. This bug also has a lot of involvement with the other end so Laura sticks around rather than be on call. She is studying for a nursing entrance exam so I try to leave her to her work. Laura stays until about three and then switches to on call with plans to come back at night to help with the nighttime routine. I am extraordinarily thankful for Laura that day. I truly do not know if Dad would have been able to take care of me. Frankly, this scares me to death and makes me feel extremely vulnerable. Saturday morning Dad thinks he is doing better. He has been using Zofran and took Imodium. But it turns out he took more than the recommended dose and that caused a problem. He is pretty much recovered now. Then Mom got up sick. So Grandma, Grandpa, Dad and Danielle, and now Mom are or have been sick. I feel doomed! I really, really hope that somehow I escape this virus. So far I am good.
I was concerned about what a withdraw would look like so I asked my faculty advisor, Lee Merchant, for advice. She was pretty shocked by the actions of the other teacher. She showed me how she has put my writing on her website as excellent examples. Then Lee read me the letter she wrote to nominate me for the Disability Awareness Award. :) She said it was an antidote for the other guy. She said that it didn’t seem like I was learning and it was stressful and the teacher was unreasonable and that one w will not significantly affect my transcript. I am going to withdraw as soon as I complete my group leader responsibility of organizing the essay.
Thank you for all your support!!!
Tuesday, February 24, 2009 6:27 PM CST It has been a crazy week.
All last week was the crazy driving brigade. Grandpa was the chauffer. Yesterday the part for the lift finally came and Dad is desperately trying to get it in.
Friday we went to Mountain View for a wheelchair appointment. I was really excited to get my new driving control. It is really hard for me to drive now. My arm is very contracted and weak. I usually have to stop driving frequently to rest. The new control can be easily driven with one finger. We played around mounting it on a new control arm. That wasn’t working and I suggested that we just try mounting it on my old control arm. Not too long later we were ready for me to try driving. The mini joystick is super sensitive so my goal was to adjust to the control so I could have some reasonable speed settings. We were all ready when the electronics guy said that my older brand of electronics will not allow this control switch without a special adaptive switch. Oh no! Betsy (wonderful, dedicated wheelchair person) was so frustrated. She had spent hours on the phone going through details and making sure everything was set up right. I was soooo sad. So close! At this point they turned to Danielle’s seat. Seating is very finicky. Very time consuming. By the time the new seat was put together it was too late to get into the sculpting. Danielle did get tires. Overall, a very frustrating and discouraging day. Especially since it lasted from 4:30 AM to 12:00 AM.
While we were in Mountain View Grandma wasn’t doing too hot. She hadn’t felt well for a few days. Exhausted, nauseas, out of breath and weepy. Grandpa called Mom because Grandma didn’t want to get out of bed. Totally uncharacteristic. After a lot of pushing she agreed to go to the ER. The hospital admitted her and after some tests confirmed our fear-heart blockage. We went up to visit with her. She was pretty worried. After our visit and game of SayGo she seemed to feel a bit better. Her heart catheterization went well. One artery was completely blocked and was successfully stinted. Another artery had an angioplasty. Now Grandma has flu like symptoms (?). Not sure if it is related or unrelated. But…she should be coming home today!
I had a rough school day. I wish I had never taken World Music. My teacher is a jerk. He really insulted me today. I was so angry and hurt. He reviewed our group paper… D (!) Luckily our grades will be individual. I guess the ‘grade’ was just like a wake up call. But then he starts harping on me. he said that it wasn’t college level writing. This really hurt as writing has always been my strong point and I passed both AP tests one with the highest possible grade! But what he said next was a personal attack-I think you threw this together in twenty minutes. I spent hours on that thing! I am responsible about my work! Then he said something about bad transition words. Everyone else he was much softer with and one girl with really bad grammar he didn’t correct at all. Oh and then he told me that I should’ve combined all the Junkanoo information. Um, he specifically told me not to touch the other people’s work! He corrected himself ‘remembered’ but this guy is totally confusing! I felt targeted, attacked, and ashamed…Mom thinks he is looking for a style of writing that I am not familiar with. We have a chance to rewrite the essay. Mom is going to help me. Hopefully I will get it right. It is ridiculous that I have to stress over what should be a simple GE credit. Oh and to clarify-I don't write essays the way I write here. My goal here is to be conversational.
So another stressful week. Yuck. I hope better days are coming.
Thank you for all your messages-they help lift my spirits.
Monday, February 16, 2009 5:23 PM CST Crazy and stressful happenings here :/
1. My food is Peptanex DT-company was bought and is discontinuing it. I have tried literaly every food. I mean literally. I'm sure you remember my chronic stomach issues. Vomiting every day. Horrible bloating and unpassable gas. Peptamine 1.5 was what I used before the Peptanex. The poi helped but I still had a chronically unhappy stomach...Until Peptanex DT. I've been on it for about three years. I had so many problems with other formulas that I had to have supplemental IV lipids...I may end up having to put back in a port and do IV lipids...It is almost surreal right now. All this work to get the port out and off IV nutrition. Pretty much adjusted to it. And now the possibility thrown back in my face. I do not want to be sick all the time! It is so frustrating to be so out of control...
2. The part Dad ordered for the lift was the wrong one. He has been on the phone all morning trying to get a different one. I don't know how successful he was. I thought I heard that it would be two weeks for the part to get here (!)
3. I decided to make the music class pass/fail until I discovered the last day was Tuesday. Too late! Ugh…I hope I do okay. 4. I have chronic issues with pressure sores on my elbow. It gets constant pressure holding me up. Always sore. Well, one popped. Ow. I really can't stay off it. Thursday and Friday I stayed tipped back and watched a bunch of TV but I really can't just do that. I can't do anything tipped back.
So lots of drama and stress here...
I really appreciate all your support! It brings a smile to my heart.
Wednesday, February 11, 2009 7:55 PM CST Sorry for being late! Things got a little crazy!
Last Monday I had a nice visit with Laurie Frazier.
Last Tuesday I had some blood work done and a doctor’s appointment. I am always impressed with this phlebotomist. She is very on top of things. I am a hard stick. She always gets me. I have been having several medical issues. A big one is cramping in my legs. It is getting worse. It has been getting pretty bad. I keep having to have Dad rub my legs. I also had a doctor’s appointment. I was hoping to get provigil (to help with my sleepiness) He said he didn’t feel comfortable prescribing medicine that he wasn’t familiar with. Frustrating-but I can understand I guess
We watched a pretty good movie, Invincible. It is a true story of an ordinary guy who earns a spot on an NFL football team.
Things were going pretty average. The red van lift was making noise and being persnickety about coming up and down. So there was some concern and the need to look into it. Well, Monday the thing gave up the ghost. Things here have been chaos since then. Now we are on a crazy driving schedule. Mom worked out this schedule of Grandpa driving Danielle and I around. Actually it works out pretty well. I have to wait twenty or thirty minutes but that isn’t bad. I am really glad that Grandpa has been willing to do this. Dad ordered a part and is hoping to fix it on Friday. My music teacher is frustrating. He keeps giving quizzes on things we haven't covered! Sometimes he'll see a question and notice that he didn't cover it and basically give the answer. But other times there are questions that neither Dad or I recognize. He doesn't tell us what to read, either. I am afraid that I will get a bad grade in the class because of his ineptness...I am thinking, if it’s not too late, I will change the class to pass/fail.
Thanks so much for all your support!! I appreciate and am thankful for each and every one of you!
Tuesday, February 3, 2009 7:15 PM CST I have had a kinda rough time.
Well, things were going well in school. Then something pretty upsetting happened in music class. We were listening to "lullaby" music. Then he asked for opinions. There was this five note sequence over and over and these clashing bells and harsh voice. I said that I found the repetitive note sequence annoying. There was this stony silence and then he said how that was a dangerous word. That we are never to criticize someone's music, it could be their life's work, extremely insulting and inappropriate, he would not tolerate such language, and on and on. I was pretty much feeling very small, scared, and embarrassed. He did ask for opinions and I didn't say the song was stupid or sucked, I gave a reason…
We had our first debate in psychology. It was on if divorce harms children socially and psychologically. This debate was pretty good. The debate due Tuesday is if sex can become an addiction. No doubt. The yes article she has is pretty weak. The no side is really long and full of harsh and stigmatizing language. I ended up pulling it out but it was hard to argue how sex cannot possibly be an addiction because I really believe it can.
I don't know. I have absolutely no ambition. I can't seem to do anything. I think of the work and on the one hand feel overwhelmed and I can't possibly do it and I get all stressed so why try and then on the other hand I wonder if I am just being lazy and using that as an excuse. On the up side- we saw the movie Inkheart. The movie was pretty good. Books a lot better. We've been watching little Robby a little bit. He is a very cute kid. I think he's pretty well-behaved, too. He came to church with us on Sunday. He was being a GPS on the way to church. :) Church was good. I hope I have a good week.
Monday, January 26, 2009 7:00 PM CST Another great week of school. It’s hard to believe that it’s only been two weeks. It seems a lot longer than that. I heard some more cool music. One group- Chanticleer, had really tight harmonies. The group is actually coming to MJC for an incredibly reduced price. We also heard Blackbird by Bobby McFerrin. He has a really wide range. He can sing while breathing in-something called circular singing. I might get some of these songs off itunes. I just got back from another great Sociology class. I am liking all my classes.
Last week Thursday was a bit of a conundrum. Janet called in sick that morning which left us scrambling. I was pleasantly surprised that Danielle would need to come with me if something couldn’t be worked out. Laura rearranged things so she could take me. But this caused me to miss our scheduled visit and massage.
Saturday we saw the movie Inkheart. It was a scramble to get there. The movie was pretty good. Books a lot better.
Off for more learning!
Thanks to all of you for all your great support! You help make my days brighter!
Tuesday, January 20, 2009 5:22 PM CST Here I am, to update!
First, let me start by saying thanks for all the messages and your great support and prayers. I always check in several times a day to see all your encouragement which helps me out.
First, I dropped Reasoning. The teacher was really confrontational and outspoken against God. I didn't need that stress. And the first assignment was confusing...So I decided it wasn't worth it. I am happy with my other classes. I am surprisingly not so stressed about this group project in Intro to World Music. I think it's because the teacher has the grades very individualized. And all my group members are friendly and seem on the ball. The class is growing on me. Today the teacher played some really cool songs by Tuvan throat singers. They are able to manipulate the cavities of the throat and mouth to produce two different notes at the same time. It sounds pretty amazing. I was a bit bummed at having to take this class but I am beginning to think it will be fun! I am enjoying Psychology. The teacher is a very dynamic lecturer and keeps things interesting.
Sunday was a pretty rough day. I have been having increasing problems with leg cramps. My legs feel strange ll the time and cramp throughout the day. Sunday morning it was really painful and I had to take Dilaudid. Then that night I was woken up with leg cramps and had to take more Dilaudid. We are going to do some blood work to make sure my potassium is okay (I am on a supplement). In general, I am having more pain problems. Doctors have encouraged me to raise my maintenance dose...I just hate being dependent on it. And I am having increasing problems with sleepiness and higher pain med dose could make that worse...
But I am excited to be in school. And grateful for all of you.
:), Christamae
Monday, January 12, 2009 7:25 PM CST The past week was good.
I don’t have too many details. Most of the week I spent reading various books and playing Nancy Drew.
Thursday was a superb temple trip. I haven’t been able to go on Thursday because of school. But Thursday has my favorite people. It was great to see them all. They had missed me and were worried about my health and if they had offended me(never!). I explained the situation and my regret and it was all good. I feel really comfortable around these workers and they are very understanding and accommodating. The Spirit was incredibly strong and it was just a really special session. I connected nicely with Laura, too. We were able to stay until 3:30 and the traffic was really good getting home at 5:30.
Sunday we started at the new new time of 11:00 with the normal order of meetings. I like this schedule. I was able to stay awake pretty easily.
Today was the first day back to school. My reasoning class was interesting. The professor is very sarcastic and classic philosophy attitude. It is pretty complicated and will be challenging. My sociology instructor is very nice-has a Mr. Rogers look. He has been personally involved in a lot of studies, including pioneering ones. I find the subject intriguing. Tomorrow is Intro to Psychology (mostly review but required for upper division classes) and Intro to World Music (GE requirement). Time to get my brain in gear. :)
You guys are great! Thanks for all the messages and support!!
Monday, January 5, 2009 4:58 PM CST We have had a pretty busy week.
Monday we watched little Robby. I think he is still intimidated and nervous around me. He tends to speak quietly and a bit reserved when I talk to him. If I get him on a subject that he is passionate about then he seems more comfortable. I love his laugh. He had fun playing jacks with great grandma June, doing a trucker sticker book with Grandma Chris, and ‘helping’ make the fudge by putting in the ingredients. He especially liked shoveling the sugar. He really seems like a sweet kid.
Wednesday we had a little New Years Eve party. I wasn’t expecting anything…we watched a really good movie called Eagle Eye. Definitely keeps you guessing. We also played a really close game of Disney Scene It that Dad won. Sadly, we didn’t play any more games.
January 1st was a huge Old Navy sale. Danielle and I both got $50 gift cards for Christmas… so off we went. I was on a mission to find stylish pants and some long-sleeved shirts. I was thrilled when I tried on some maternity pants with elastic waist and they fit! And were comfy! I got khaki, dark brown, and dark blue. They were marked down for $11! I found some cute shirts, including a butterfly shirt that was the very last one-and it fit. Usually shopping depresses me because it is so hard to find things that fit. This time I was excited about great finds. All of the shirts will need cut off and shortened sleeves and pants hemmed but those are ‘normal’ adjustments…Overall, I am really happy with the visit :).
Saturday we had a visit from Aunt Ramona, Aunt Cyndi, and Kaitlin (Courtney had to work, Shayna’s back in Utah). Aunt Ramona forgot our gifts on the traditional Christmas visit. If we get to see her twice then I say we should have these forgot visits more. Aunt Ramona is always very creative. One of my gifts was Disney figurines- Minnie and Mickey. I have been wanting mature figurines. We had a nice visit-but, unfortunately, I don’t remember much. I have been having really bad sleepy trends…
In fact I just had one. They are super annoying. I really hope they don’t happen during school as I hate them and they make learning practically impossible. I slowly get tired, borderline, where I am awake but not enough to retain so I essentially don’t remember what it happened. I am scared of it happening…
Hallelujah-to everyone’s rejoicing church is starting later! There has been some confusion. This last Sunday we started at 1:00 with classes in the opposite order. The new final decision is church starts at 11:00 in the regular order…
Thank you so very much for your support!!
Monday, December 29, 2008 5:45 PM CST The past week has been busy.
Monday night we went and saw Christmas lights. In our city there is a street called Christmas Tree Lane. Every house goes all out in decorations and lights. In return the city doesn’t charge them for electricity in December. It is always fun to go ooh and aah over the lights.
Tuesday we had some surprise visitors. The Stones came a caroling-in four part harmony. Man that family can sing! They could definitely put out a CD.
Christmas Eve we watched the traditional show- A Muppet Christmas Carol. I love that show! The music is fantastic. Rizzo and Gonzo give a creative bantering narration. Scrooge is depicted perfectly…All around superb! This finished off all our Christmas shows.
Then we opened the traditional gift…pajamas. Mine were cute and more importantly, comfy, pink plaid. We finished off the night with the reason for the season-the story of Christ’s birth from Luke. Later I read the three page version I compiled from all the books of scripture from a couple Old Testament prophecies, the angel visiting Mary and Joseph, the journey, birth, visit to the shepherds, and visiting wise men. I put together the best parts from each book. I was pondering the true meaning of Christmas and wanted to write it down. I was thinking about the birth of Christ. First Mary. What awesome responsibility she must have felt. The total inadequacy and trepidation-how am I supposed to raise God’s son? What was it like to know that the child you carried and birthed was destined to live a life of sorrow and die a horrible death? Did she try to stop it? What was it like for her? For Joseph- First the great faith and humility. Faith to believe in Mary’s purity and the prophecy. Humility because he never had intentions to make an example of Mary-never wished to shame her. The worry about providing…the son of God can’t go hungry! What do I teach him? Christ himself. I wonder what his life was like growing up. How did He learn? Did He go to school? Did He regularly visit with angels? I guess I wonder what His life was like. I think sometimes we forget that He had a life, too.
Christmas came! I was really excited to see the reactions from some of my gifts. I had some nice things in my stocking. Most notably the $50 Old Navy gift card so I can get some much needed clothes. There were ipod speakers, bracelets, and some lotion. Then to the presents! Grandma really liked the willow tree figure I got her-the female statue with the gold heart- “because she has a heart of gold.” Mom and Dad were surprised and happy with the edited movies I found, True Lies and The Shining (their first date). Mom really liked the collectible bear Danielle and I got her together. Danielle was happy with the CD and Pride and Prejudice. I took a lot of care with Dad’s gifts. Besides the movies I got him a Maxine calendar. And I got a special recordable card where I expressed some sentiments. I wanted him to have that verbal reminder. I got a couple shirts (really cute one from Danielle), a lil’ webkinz koala, a CD, and we got some family gifts. A couple books (including new Leven Thumps!), the new Nancy Drew game :), and the really big present…tickets to see Lion King on broadway orchestra section!! I am so psyched about this! I have wanted to see Lion King on Broadway for like twelve years. I will just have to hope and pray that I am not sick when May 30th rolls around. I also got a pleasant surprise in the mail from my disboards friend, Kara, who sent me some great pins. :) Shortly after that we decorated sugar cookies. I always enjoy this. I can even eat little bits of dough because it pretty much dissolves with just a little manipulation. All in all I thought it was a very good Christmas.
The day after Christmas was when all the family came to celebrate Christmas. I was really looking forward to seeing everyone. We had already seen Shayna for a couple days on her visit from Utah. The day started pretty normally. Aunt Ramona brought tons of food and coupled with all of ours there was a ridiculous overabundance. We had a visit while everyone ate. Then it was time for presents. We let little Robert open his first. He was excited about the abundance and seemed to enjoy everything. Then we had Robert open his stuff and he left. As the other gifts were distributed Aunt Ramona got upset because she forgot my present as well as Mom’s, Dad’s, and Danielle’s. I didn’t feel upset but Aunt Ramona was visibly upset. So we decided to give her our gift first. Part of the reason was because a significant portion was homemade sweets (and she is on a diet) so we thought this would mitigate the guilt. Well, as she opens the bag, a swarm of ants crawl on her and start biting. These bites hurt! The ants had gotten into the candy. The next twenty minutes was spent killing this swarm. Then Dad checked the other bags and they were ant infested. So poor Dad, who is highly sensitive to stings, carried out exterminator duty. Aunt Ramona was saying she deserved it for forgetting the gifts…Dad came away with welts and a swollen hand…Aunt Cyndi got me an itunes gift card and a scarf that I might be able to wear open on my shoulders-she did recognize the fact that I can’t wear a scarf in the traditional fashion because of my trach. Kaitlin was kind and used her limited money to buy us little gifts. I don’t think I’ll use her little sponge but I thought it was great how she thought of others. Courtney made some comment about not having money when she makes quite a bit and just earlier that day had bought a straightener at Wal-Mart. Courtney seemed to be in a funk the whole time...I am worried about her. I did have a nice little conversation with Kaitlin. The next morning the relatives were off.
We went to Megan Breck’s wedding reception on the 27th. They looked great- so much in love!
Next year church starts at 1:00. Hooray! No more getting up at 5:30!
The washer broke but handy Dad fixed it.
And that is the news for this up and down week.
Thank you, thank you, thank you for all your support!! I look forward to entering the new year with you.
Monday, December 22, 2008 11:32 AM CST The past week has been pretty busy.
Monday and Tuesday Grandma and Mom went shopping so I had to go with Dad to drop them off and pick them up. I don’t know why but I was really depressed those two days…frustrating!
I have been reading different books centered around Christmas- since it is Christmastime!
Thursday I went to the mall to finish up my Christmas shopping. That was fun. Everything is here and wrapped. All done. :) Thursday Julianne came over for a visit. :)! She is such a great friend. We had a great visit…and I found out that she and her husband, Eric, are expecting! I am excited for her…
After that Mom, Dad, and Danielle needed to go to the mall so I had to go. It wasn’t bad, though. Then we went to the ward Christmas party. It was pretty nice. I got to talk to Julianne some. There was a really nice nativity scene/play. Enjoyable.
We went to the ward Christmas party. It was pretty nice. I got to talk to Julianne some. There was a really nice nativity scene/play. Enjoyable.
The Christmas program at church was really good. We have a really good choir.
I have a pretty cool Christmas magic story. Little Robby (my brother Robert’s son) went to see Santa and asked him for a puppy. When they got back to the duplex there was a puppy under my brother’s big rig with a tag that said ‘love me.’ We are thinking someone probably dumped him-but still. Pretty compelling in a kids eyes.
It’s hard to believe that Christmas is only a few days away!
Thank you for your continued support and kindness!
Monday, December 15, 2008 1:49 PM CST Sorry it has been so long. I had a flurry of activities and then just needed to catch my breath. I will highlight the big events.
First finals. I have been out of school for a little over a week. It is kind of weird. I keep thinking that I should be doing something…My finals went well. The Psychology final was two parts. One was a regular test that she made open book. The other part was a visit to the Modesto Residential Facility. This is a step down facility for people with mental illness. I was surprised by the normalcy. I figured there would be more security personnel and structure. Some of the people seemed pretty put together. One lady who had bi-polar and had OCD was very lucid and descriptive of her symptoms. Another man who was diagnosed with paranoid schizophrenia discussed the process he goes through to see if something is a delusion. He has made great progress and his diagnosis has been downgraded to schizoaffective disorder. Not everyone was as successful in treatment. One man with a diagnosis of schizophrenia had some serious problems with reality and delusions. He had some maladaptive views on religion and that he was Michael and was meant to save the world. I read his website and wow-that guy needs some help. One thing he said intrigued me. he said that if a person has untraditional or ‘strange’ beliefs that don’t hurt anyone they should be left alone. My final grade in Abnormal Psychology was 99 The best compliment was when Lee said that my cases were the best she had ever read (25 years of teaching) and asked permission to use as examples. And she asked if I could be a teaching assistant. :) I just looked up my Political Theory grade and it is 97 :) So I am pretty pleased with my trial semester of college. Hopefully I can handle the 12 credit hours next semester.
I had a temple trip on the 5th. It was different and a bit difficult. Laura wanted to see the special statue exhibit. I wasn’t too keen on the idea but I knew that if she mentioned it then she must really want to see it. There has been this missionary couple that think very highly of me. I figured they would be gone by now. But they were still there. They took a bunch of pictures which was awkward. Then during the session I kept having to be suctioned. So much so that the movie kept having to be paused. It was really awkward. I felt bad. It didn’t seem to bother people. In fact, a lot of them approached me and said how I had made an impression on them. But I still felt self-conscious. Hopefully the next one will be better.
One fun activity was the Progressive dinner. This is a church tradition. It is a dinner that progresses from house to house. Our house is the dessert house. I really enjoyed having people over. I was especially pleased that I was able to talk. Brittany and I had a good conversation. Our house is all festively decorated for Christmas.
Christmas is coming! Shopping is in full swing. I am trying to make the gifts personal. We have done a few of the Christmas traditions. We have watched- Rudolph, Frosty, Santa Claus is Coming to Town and How the Grinch Stole Christmas (cartoon). We still have many traditions to complete. Things will probably kick into high gear Friday when Danielle is done with school.
Thanks for your continuing support and love. I check in often to look for your lovely supportive messages. :)
Monday, December 8, 2008 5:16 PM CST Hey! A great big THANKS! to all! I will be done with school this semester and all finals Thursday so I will update then.
Tuesday, December 2, 2008 0:48 AM CST Break has been good.
Shayna came in Wednesday. She drove in with a friend from Utah. It’s always a treat to see her. Thursday Robert and little Robby came over. Thursday afternoon Aunt Ramona, Aunt Cyndi, Courtney, and Kaitlin joined in the festivities. The big dinner was planned for Friday so Thursday was a time for visiting. Overall the visit went very well. No arguing. That night we played a hilarious and awesome game- would you rather…It involves answering unique questions and performing challenges. Like one question was- ‘would you rather have your ears where your eyebrows are or your nose where your belly button is?’ The challenges were quite entertaining. Dad’s interpretive dance of a cat stalking and attacking its prey was great and Danielle’s breakdown moves were pretty good. The hit of the night was Aunt Cyndi’s booty dance. I don’t remember when I have laughed that hard…The big dinner was planned for Friday. As usual we had way too much food. Amber (Ramona’s daughter) and her boyfriend Dave joined us. He seems nice and Amber seems happy.
Once company was gone (Saturday) I worked all day on my Political Theory essay. I am feeling the time crunch. It is due Thursday-same day as my Psychology test. We were planning on going to church. But Danielle threw up in the middle of the night. I slept until 9:15 (unprecedented). Then we got an explosion of surprise visitors. Sopheia comes in (!) with Robert and little Robby. I was cordial. A bit uncomfortable because I was in my pajamas. Then two older men from church come to see Grandpa. Then Shayna’s Dad dropped her off.
Today was spent on the essay...
Thanks for coming by and all you do!
Tuesday, November 25, 2008 7:36 PM CST It's been a busy week.
I spent a lot of time on my Tourette's paper. I wanted it to be perfect. A big part of the time was making sure I sited things correctly and tracking down who said what. And the bibliography took my three hours! But I think the paper turned out pretty good. The presentation went well.
We got another essay assignment from Political Theory. This one is about what makes a good ruler using Machiavelli's the prince. That guy was-yuck. We have to choose what we think are two good ideas & a political leader in the last hundred years that had them and the same for the opposite...I'll have to see if I can find two good ideas...
Right know I am fuming...Okay. I am really mad and frustrated with MJC. First they say Dad can no longer be my scribe for tests...
Today I was told I couldn't use the bathroom! Some faculty member saw my Dad and I in the bathroom and expressed "concern" that he might do something inappropriate! Ridiculous! And now the DEAN says I can't use those bathrooms.
I can use one of two on the whole campus! I have been to one. It is very inferior. No heat. No air conditioning. Poor lighting. And it smells. The toilet leaks when flushed (the lady told us this as I was told I HAD to use this bathroom!) So I have to use a separate but "equal" bathroom.
I shouldn't have to go halfway across campus for the bathroom. It is very hard for me to drive anymore. Heat makes me very sick. Cold is bad for my lungs...And why should I be forced to use a broken bathroom!
Absurd! And wrong!
And Dad is feeling guilty like he did something wrong!
But what can I do???
>:(
So there it is...
Happy Thanksgiving! I am thankful for all of you!
Tuesday, November 18, 2008 5:07 PM CST Not too much to report.
One cool thing-when we first turn in our case studies it is just for the teaching assistants to review and give pointers. Well, I guess Lee was shown my Substance Abuse case and she was really impressed and wrote some nice comments.
Besides that I have just been working on my papers. I just have the Tourette's left.
The question-Danielle has her own full-time aid paid for by Voc Rehab. That's why she's been able to go to school. :)
Sorry there isn't much to tell...hopefully it will be more interesting next week.
Thank you so much for all your support! (((hugs)))
Monday, November 10, 2008 6:29 PM CST This will have to be a quicky but I have to keep my faithful supporters informed.
I got my Psychology test back. 92 That's okay. The thing that really impressed my instructor was that I was one of two students who passed (he had a low C). And she accidentally sent a test twice as long to the disabled testing area. So I guess I should be happy.
We got our second essay assignment for political theory. We are supposed to write about a past or present public policy/law or political action and if it was/is just or unjust and why. I chose the Futile Care Act...unjust! If anyone has experience with this your help would be appreciated.
I am officially mildly sick. But the TOBI is taking good care of it.
I had my faculty advising appointment with my awesome psychology instructor, Lee. She was helpful. I am enrolled in classes next semester-attempting 12 credits. Psych 101 w/ Lee, History of World Music (blah, GE), Reasoning (one of two choices under GE, Philosophy class and looked interesting), Intro Sociology with the instructor Lee recommended (GE but applicable to major). Major=Social and Behavioral Science.
Well, I gotta finish my schizophrenia case study, work on my psychology essay on Tourette's, and my Political Theory essay. Schizophrenia due for feedback Thursday, Theory essay due 18th, Tourette's 25th. I am making goals for progress. Otherwise I will get overwhelmed, panic, and shut down. Today my goal is to have all major research organized and completed.
Thank you, thank you for all your prayers and messages!!
-Christamae
Monday, November 3, 2008 4:11 PM CST Update since Thursday (see journal history)
Halloween was a bit untraditional for us this year. We had an appointment at Rehab Specialists in San Jose. I have to give props to this excellent place. They always put the customer first. It is common for them to do needed work on the wheelchair before it is officially approved or they are reimbursed. It is also common for them to loan you needed parts until the approved ones come in. We always work with Betsy. She will work with you until it is right- very dedicated. On many of our appointments she will stay two to four hours after closing to finish work. She is also an expert at getting things approved. We love them enough to get up at 4:00 AM to make the appointment. The first thing I did was try a mini joystick. Getting it set up to test was an adventure in and of itself. I really liked it. It was super easy to drive, only requiring the use of one finger and very little pressure, and I did pretty well with the sensitivity. It is getting extremely hard for me to drive with a traditional joystick- especially for any sort of distance. Getting the mini joystick will definitely make a positive improvement in my quality of life. I also had some padding redone on my chair. Both my elbows have bad breakdown and pressure sores. My left arm rest’s padding was all replaced and the arm rest was moved forward about two inches. This made a huge difference. My elbow already feels much better. My other elbow was also given some needed foam replacement. Both feel better. I saved the more complicated time consuming projects for another day.
Mom requested that we leave early. We had a special situation arise. My brother Robert has been reconnected with his son. “little Robby/Robert.” Without going into too much detail, for about three years Robert has been prevented from seeing his son by his x-wife Sopheia. She would move around and refuse to give her address. A few months ago she started a paternity suit. Robert challenged paternity. Sopheia already testified under oath that two of the children were not Robert’s. She has repeatedly missed the paternity testing. A couple times she offered to let Robert see little Robby but Robert abstained because he didn’t want to hurt little Robby if he wasn’t his Dad. Well, at this last court case Sopheia offered again and Robert eagerly agreed. He is really enjoying the experience and seems really happy and uses the term son a lot. On Halloween they both came over. Little Robby is very cute and polite and smart. I can see the affinity Robert has developed.
Robert and Little Robert came over again on Saturday. :)
Sunday Mom felt pretty bad so we weren't able to go to church.
This morning I woke up coughing my guts out. I had some really nasty plugs where I couldn't breathe at all. I also have pain in my back when I am on the vent. I think I am officially sick. I have had some pretty junky days over the last few weeks but was reluctant to take the TOBI because I have a limited quantity. I think I better start it tonight and hope the junk clears up quickly so I won't miss school.
My Political Theory test grade was posted and I got 14.5/15.0 :)
That's all for now. I am grateful for all of you and all you do for me. (((hugs)))
Thursday, October 30, 2008 5:09 PM CDT The past week was pretty good.
Monday my old Psychology teacher Laurie came over to visit for about an hour. I enjoyed it! We are planning another visit.
I did well on both my political theory quizzes. With the extra credit study guide I got 7/6. We finally got back the essay portion of our last test Tuesday. I got a 93 And we should get our first essay assignment back ‘soon.’
In Abnormal Psychology we had two compelling and insightful speakers. One girl had really severe anorexia with bulimic tendencies-went through nine inpatient programs. Still full denial. Ultimately it took a tragedy (mom died) and “finding God” to get her in remission. She still has to have reinforcers. She has signs on her fridge, bathroom mirror, and bedroom about her worth, God’s plan for her, and food being good. The other speaker talked about Body Dysmorphic Disorder. All I can say is that this goes much further than ‘I am ugly’. This girl always covered her face, would only visit in complete darkness, and had a ‘suicide journal.’ She wrote about a totally skewed appearance (she was pretty) and wrote about and drew pictures about all the ways to kill herself. I found it interesting that she also said that God was key to her recovery.
Friday was a temple trip. It was good! The lady who was instrumental in my endowment accommodations and helping to make subsequent trips go smoothly is leaving November 1st so I had to visit with her a bit. We got there early enough to do a few initiatories, too. Temple trips really help renew and refresh me.
Danielle’s birthday was on Thursday. We just had a little celebration that night. The big thing was going to Tahoe Joe’s Saturday. Danielle has wanted to go to a nice restaurant for a while. It’s not appealing to me because I can’t eat and it is too loud to really talk. But it was her birthday. It wasn’t that bad.
Our respiratory supply company wanted a study without oxygen at night. The previous company never ‘officially’ submitted anything. All I know is that the times my oxygen has accidentally been left off I got a massive headache. Well, the results definitively showed my oxygen dropping to 85 while my heart went to 130. And that was only over a three hour time period. Actually it is a bit of a mystery why I need oxygen. My vent breathes completely for me and I don’t have a heart problem…I am just glad the test reflected my need.
I think I did pretty well on my tests. I'll find out Tuesday.
:) A big Thanks! to Kara for the awesome pins!!!! And I haven't forgotten you Hilary...Thanks to all of you for your great support!!
Tuesday, October 28, 2008 0:54 AM CDT Updat Coming Thursday! Two big tests to study for and papers to write. :)
Monday, October 20, 2008 11:28 AM CDT School continues to go well. I enjoy learning. It’s nice to have the brain stimulation. I am definitely preferring Abnormal Psychology. This week we studied suicide. Lee emphasized that any mention/threat of committing suicide should be taken seriously and that the most appropriate thing to do is call 911. Political theory is okay. Right now we are studying pedagogy of the oppressed. I find the book a bit ridiculous. It does have some good ideas but the guy rambles and uses complicated language in a book that gives advice to the oppressed-the illiterate and uneducated. He also contradicts himself. I am a bit concerned as we are going to have a double quiz this Thursday.
Saturday was the big church craft day-Super Saturday. It was fun! Laura was working in the kitchen making the food. Dad patiently helped with my intricate perpetual calendar. Poor Mom was horribly sick with a migraine and had to go home. She threw up at home. I recruited a couple of people to do Mom’s crafts. Janet did a great job on the families are forever sign. I flitted around a bit and talked. I did more of that when Laura came out of the kitchen. She’s a natural talker and it’s always easier when she’s around. I talked a bit with Laura while she cleaned. Overall, it was a fun activity.
Mom was still in pretty bad shape so we missed church…
On the medical front, our respiratory supply company is questioning our need for oxygen at night. We have to do a night without the oxygen to see if our SATs drop. Ug. I get a massive headache without oxygen. I hope the readings reflect this so I can keep my oxygen.
This week-Laurie Frazier visits Monday, temple Friday.
I continue to be thankful for all your love and support. It means a lot. I eagerly and frequently check my site for your supportive messages...Thanks!
Monday, October 13, 2008 4:08 PM CDT ANONYMOUS "/" QUESTION
:)First you don't need to be anonymous-any reasonable question that isn't derogatory, inflammatory, accusatory, or argumentitive I will answer.
The first important point is that my brother left the church and is no longer LDS. In our home, if you visit and you bring coffee, energy drinks, tea, etc., we won't forbid you from drinking it. Alcohol is never allowed.
Recently, the church magazine addressed this issue with the following information:
“Is there anything wrong with drinking sodas with caffeine in them? Is caffeine bad? The Word of Wisdom doesn’t mention it.,” New Era, April 2008, 41
Doctrine and Covenants 89:9 says we shouldn’t drink “hot drinks.” The only official interpretation of this term is the statement made by early Church leaders that it means tea and coffee. Caffeine is not specifically mentioned as the reason not to drink these drinks.
However, we should keep in mind this counsel given by President Boyd K. Packer: “The Word of Wisdom was ‘given for a principle with promise’ (D&C 89:3). … A principle is an enduring truth, a law, a rule you can adopt to guide you in making decisions. Generally principles are not spelled out in detail. Members write in asking if this thing or that is against the Word of Wisdom. … We teach the principle together with the promised blessings. There are many habit-forming, addictive things that one can drink or chew or inhale or inject which injure both body and spirit which are not mentioned in the revelation. … Obedience to counsel will keep you on the safe side of life” (“The Word of Wisdom: The Principle and the Promises,” Ensign, May 1996, 17–18 )."
As a scripture says in D&C "it is not meet to be commanded in all things."
For the active members in our home-we only use caffeineted beverages medicinally. For example, my mom gets horrible migraines. Instead of taking excedrin (tons of caffeine) she drinks some caffeineted sodo with tylenol. My Dad's sleep apnea isn't under control and he falls asleep while driving so on trips he takes caffeine pills and energy drinks. He even has problems falling asleep in the house and is extremely hard to wake off his mask so he usually drinks a little caffeineted soda.
In summary, my brother is not a member, there is no official church rule, and for our home it is used medicinally. :)
ON TO THE JOURNAL
First a BIG thanks!!! to Hilary! Your poster was awesome! E-mail coming later...
The past week was pretty good.
The focus of my abnormal psychology class is to learn to understand and empathize with people who have mental illness. We watch counseling interviews, have presentations by students on various disorders, and have speakers with mental illness come talk. This past week a young woman with bipolar II gave a presentation. I found it very insightful.
I got the 60 question part of my political theory test back. As my professor handed it back he said, “you did very well.” According to the writing on the scantron I got 14.5/15.0, according to the website I got 14.5/12.0. The only way the second could be right is if he took an average for the curve and I was way above. Either way I am happy! I am still waiting on the essay portion and the project paper to be returned.
My abnormal psychology teacher, Lee, agreed to be my faculty advisor. I think she will do an excellent job. Who better to advise me on how to be a counselor than someone who was a counselor.
Wednesday Mom, Danielle, and I all saw the new pulmonologist Dr. Clayman. I had quite a bit of trepidation going into this appointment. I was afraid that Dr. Clayman would not prescribe my meds and that my care would suffer. I was pleasantly surprised. He was very patient and thorough. He even mentioned that we should keep me in pediatrics as much as possible. He wrote a referral to see Dr. Rosby for an upper airway bronchoscopy. I went to see if I have scarring or nodules on my vocal chords. Maybe we can improve the quality of my voice and make it so I can wear a speaking valve. Overall it went very well.
Friday I had my preregistration appointment. Now what I was expecting was to schedule my classes. I spent a lot of time looking at both transfer plans to match GE credits. I found out that I wasn’t scheduling. It was just a consultation??? Then he said that students with disabilities don’t get priority registration… ??? I could’ve sworn that was specifically mentioned on the disabilities accommodation page. Every school does that. There are so many classes that I can’t take because of my disability. Even worse is that the school does registration alphabetically by last name so I am going to be in the last group of students to register (Zimpel). Totally unfair and very worrisome. I am going to check the facts. I hope they are wrong…
Church was good. With a little reminder from Dad I did the newsletter. Sister Breck was very appreciative. I was really happy to see Laura. I hadn’t seen her since my birthday because we had general conference and then she missed the visit because Connor was sick.
Oh I am having this really frustrating problem. When I have a lot of school work and I feel the tiniest bit overwhelmed my body just shuts down and puts me to sleep. It’s driving me crazy.
That’s about it. Super Saturday this week!
Thanks for visiting! I appreciate you all!!
Monday, October 6, 2008 12:06 AM CDT The past week has been a good week.
Tuesday we got our psychology test scores back. I made a 94. That is good…but I wish I got a 100. I am eagerly awaiting the opportunity to see what I missed. Tuesday I also turned in my Political Theory assignment. I had fun with it. In my perfectionist fashion, I far exceeded the assignment minimum and really got into it. A lot of the time if I have an opinion related to an assignment and I don’t incorporate or express it I feel like I am being dishonest…I know I am a pathetic perfectionist when it comes to grades.
Thursday was my first in class essay test. I had a lot of reservations about this. The school really did not have a good set up. I couldn’t use my typing program. They couldn’t project the screen so I could see it clearly. There wasn’t anyone that was a good typist…I began to get concerned. It is hard to dictate essays. It really interrupts the thought pattern. Especially if the screen is difficult to see. The disability adaptive testing counselor contacted my teacher to request the option of taking the test at home. I was doubtful that this would be allowed. But was thrilled when the teacher agreed. I wanted to honor his trust as completely as possible. My psychology class was canceled which made things easier. I started the test a little before class time (no extra study time) and had a timer going the whole time set to my double time number. I had some reservations about my typing ability…I studied thoroughly. I am glad I did. The questions were much more involved then I expected. I took twenty minutes deciding what to write. Once I did I was a flurry of typing. I completed the test using just twenty extra minutes and the essay was twice as long as the minimum. Overall I was pretty pleased and am waiting with a bit of trepidation to see my grades.
Friday was my birthday! It was a good one! Probably one of the best in a while. Laura came over at nine. She had a couple special things planned. She walked in with balloons and flavored chap stick (mint chocolate chip ice cream and cinnabon-since I can’t eat). Then we went off to the mall. The first plan was to get a free picture together at picture place. Evidently there is a free picture coupon online for the picture people. That took a bit but was fun. I have never taken a picture with a friend. That was fun. While the picture developed we looked around a bit. I went off to the Hallmark store. I like looking at the figurines and briefly browsed the webkinz. Then we went to bath and body works. Laura needed to return some lotion that she was not satisfied with. Then she walked around with me so I could help her choose. At this point I was suspecting the lotion was for me…and I was right. Two cents with the return-I think that’s how she justified it in her mind. :) I did a quick stop at Limited Too because there was a sale. Got this cute butterfly t-shirt for $10. Then it was back to the picture people to get the photograph. They turned out pretty well. I picked a picture for the free 8x10 and we were off. The original plan was to come home and watch Princess of Thieves but Laura had to go home to take one of the kids to the doctor. At this point there was a slow down. We (family) were supposed to watch the movie at 1:00 but didn’t get started until 3:00, 3:30. I read the new Eragon series book Brisingr while I waited. After the movie we played Disney Screen It and Taboo. Then I opened presents. Itunes card and new Nancy Drew computer game from Mom and Dad and a webkinz bat from Grandma. When I saw the bat at Hallmark I was unsure but Barty the bat has grown on me and I think he’s cute. I also had several cards and several facebook posts. We settled into the evening shows, ending with Dr. Quinn and that was my birthday.
Saturday I watched the first sessions of General Conference and finished Brisingr and read my psychology chapter. Sunday was more great General Conference.
Overall a nice week.
Thank you for all your kind words and support! Thank you for all the birthday wishes and to Angel Polly for the card! I so appreciate all the support you guys give me!
Sunday, September 28, 2008 3:18 PM CDT Sorry I didn't update! I was working on an essay for political theory and studying for a test in abnormal psychology...
So the last two weeks.
Um, I got a fun assignment for Political Theory. It’s our first paper. I have been assigned by the President to be in charge of the new citizenship requirements and test (if we want to change it). I really got into the assignment. I looked up the current rules. I wrote a new test (took me like 5 hours). Told the President some things need to be changed...The second part of the assignment is to write in the character of two political theorists. I chose John Adams and Antigone. That part was fun! Actually, I have enjoyed the whole thing. I hope I get a high ‘A’. it is due Tuesday and I am basically done.
Friday the 19th was another awesome temple trip. I am so grateful that I have been able to continue attending despite being in school. That was like a personal stipulation for me.
I had my first abnormal psychology test Thursday (25th). I studied madly. Had all these specifics and processes down…the test was pretty easy. Even if I get all the questions that I was marginally unsure of wrong, the most I can miss is five (out of fifty). Results Tuesday.
Friday September 26th I had my meeting with my counselor. I brought my AP scores, ACT scores, and transcript. He also helps with accommodations. At first I was a bit wary but I quickly warmed up to him. He was really nice and very helpful. He was really impressed with all my academic accomplishments. He was very open to my ideas and concerns. One thing he said that I was relieved to hear was that I didn’t need to worry about taking the English placement exam and that I could bypass the English 101 requirement. So many classes have English 101 as a requirement. I felt that it would be redundant for me to take English 101. I felt the meeting went superbly and I feel that he is going to be an excellent counselor. I go back in for priority registration on October 10th.
Saturday the 27th we had a special broadcast from church leaders to all the women. It was nice. I especially enjoyed Dieter F. Uchtdorf’s talk. He emphasized how we are often too hard on ourselves. He said that we need to focus on creating and compassion. Creating can be simply a smile or laughter to a harmonious home to poetry, music, painting, gardens-overall goals. And then compassion is service. Sometimes I get discouraged thinking about service. Because I can’t really serve others and I wish I could…
General Conference is next week! I always enjoy the talks and wonder what they are going to emphasize…
I have my first political theory test Thursday… (gulp)
Then Friday I turn 23!
Monday, September 15, 2008 11:32 AM CDT The past week in school was okay. Abnormal Psychology was excellent but political theory was blah.
I am actually getting frustrated with political theory. The in class stuff moves so slow. We spend the whole time going over like ten pages of reading. And he lets things get way off topic. Like Tuesday somehow we went from John Adams and a Republic to slavery, how we wronged the Native Americans, and the Constitutional Convention. And often he doesn’t discuss the reading for the quiz. Then he asks the most pointless questions like when was the author born or what was the piece called. Things that have nothing to do with the concepts. Or he’ll pick a random quote that wasn’t even part of the author’s main point. Between the study guide and reading and memorizing I probably spent four hours studying. It’s almost like he wants you to memorize it word for word. I felt more confident on this quiz, not sure how I did yet. He said he will have a study guide for the tests. I hope so since the tests are essay and fill in the blank. It’s strange, the in class discussions are so slow, drawn out, and all over the place. And then the quizzes ask strange or extremely specific points making them difficult.
I am really enjoying Abnormal Psychology. That teacher is really good and I like her personality. She gives very interesting lectures and shows some good videos. Last Tuesday we watched a video on different ways of counseling. I have always liked learning about medical conditions so the whole class intrigues me. I told her some of the things I would be interested in maybe doing and she suggested a licensed clinical social worker. It looks interesting. And I didn’t know that these social workers can also specialize in writing government policies. Something to look into.
This Friday is a temple trip!
It’s hard to believe that in a little over three weeks I will be 23. Strange. I envisioned a much different life for me at twenty-three than what has occurred.
Thank you for all the messages and support and prayers. I check the guestbook a lot and every message is so appreciated!
That’s all for now.
Monday, September 8, 2008 3:46 PM CDT So Tuesday the plan was to get the Psychology book before class. So we left a bit early. All I can say is that it is a good thing. It took us 40 minutes to find a parking spot and then there was a huge line for the bathroom. We were rushing to get to class in time. Especially since if you are late you can’t take the quiz. Then the pencil Dad had didn't have an eraser...and I made a mistake right off. I was pretty flustered taking it and I was trying to quickly finish. The professor was pretty specific like asking what date the things were written and I made stupid mistakes. With the extra credit I made a 5.5/6 on the quiz. Hopefully the next one will go smoother. We did get the book for Abnormal Psychology. Then it was off to GI with Betsy. I really like Betsy. She is very good at coordinating things. She originally ordered the CT of my head and referred me for the growth. |