Journal entry by Debby Larimer

I have made several attempts to update but my iPad or the site was shutting down., so I’d like to try today. There are several things I’d like to share and then more later.

I cutback some of my meds and did the preadmission for surgery tomorrow, I am having a procedure that is a combo of cystoscophy, paralyzing my bladder and kidney stone removal. In the past I had those on separate occasions but it seems it’s titled as Cystoscopy W/ Ureteroscopy W/ Lithotripsy so I hope the fact. when they called with the time, I’m leaving at 4:30 am. With the testing done prior to this, I also learned that there are concerns with early renal failure or perhaps my liver. Then Wednesday I had a troubling sign at my catheter site and tonight a sign of very intense signs of what I would think is infection with my bladder. I wasn’t concerned until I started getting symptoms. I called but didn’t hear back. I tried to call the on call doctor but never got a call back. I guess I will go in the morning and time will tell. I’m a bit uptight about packing up. I’ve also had these pains in my chest when my nurse case manager that calls me from the insurance indicated that my records say my chest pain is due to insufficient blood to heart. I’m hoping these things can improve with time. I’m a bit overwhelmed lately, but some of things are fatigue. I’m too tired tonight to share what I had wanted.

Both Geoff and Jennifer were referred to the dental clinic at LVHN. Jenn was referred by her cardiologist and Geoff at his neurologist appointment.  They can now pursue the timing for dental care at the hospital where their other treatment takes place.  I am very grateful for this step.

Geoff also was referred to a few other specialties to help in his care and his neurologist is looking into getting him switched from where he goes for his counseling and behavioral health to in network with LVHN.

  Well I need to get up in a few hours so I’ll update later

Goodnight friends.  Love to you all.

Isaiah 26:3

“You will keep in perfect peace all who trust in you, all whose thoughts are fixed on you!”

Journal entry by Debby Larimer

Most days are pretty routine and mundane in a way that keeps our household running. This past week was much more busy and chaotic and challenging but it ended well.  There are usually multiple appointments that members of our home have weekly, but recently there have been multiple important activities, meetings at the home and appointments that seem to be happening around the same time. There is a need to redirect, remind, refocus and rehearse many daily living steps over and over, with repetition to learn. Patience, energy and discernment do not always flow so I try to get as creative as possible. Last Tuesday, there were multiple things scheduled here in the home around the same time for me. I had a Palliative care appointment that was supposed to be followed by a nursing visit and two of my adult children had meetings but their support worker needed to discuss something with me. My brain was not staying on track and I was distracted and  in very much pain. Sometimes being mentally busy helps distract me from the load of physical restrictions and signals, but it was quite overwhelming. I know very well that the actions, social cues, and impulsivity in some areas of my adult children are sometimes misunderstood to those on the outside looking in.  Things are often complex in all of our lives , but it can be defeating on days when routine is changed or things get confusing. This week continued on this way. I was bouncing in my thoughts from one thought, or lost thought, to the next.  I am an earlier riser each morning, and I battle a lot of nausea and internal discomfort each morning. My muscle weakness and coordination tends to very awkward so I may knock things over, drop, spill and run over my attached tubes. I am ending up with bruises that usually let me know that I am persistent to attempt multiple moves. I had a close call fall more recently while trying to stand to transfer but somehow I course corrected and did not hit the floor.  I see strength and feel more strength and stability in my upper body but standing, stepping or bending are not progressing. My hands have been much more stiff and painful to bend at the wrist and fingers. Compression gloves helps a little but I am having more inflammation.  A doctor I spoke to last week thought perhaps being on less steroidal treatment could be contributing to some of the inflammation in my chest and joints. I am so very grateful that my cortisol level and adrenal glands have improved but I burn out and I’m fighting against this loss. My brain is HYPER and sometimes I want to desperately move and talk and find things to do, but my body malfunctions. I keep trying because my mind is flowing, coming up with ideas, dreams, reaching higher, dreaming bigger but if I over exert, it doesn’t just fuel my pain, but it literally can shut me down. When illness is systemic, auto immune and involving multiple organs, it affect you as a whole and

cat scan
There were needs like oxygen and supplies to order for me, 

Journal entry by Debby Larimer

I am writing about many feelings.  I was feeling low, like let’s go limbo low, debby downer, and was tempted to get in a slump where lessons have taught me not to go.  I was not looking for pity or a problem but I struggled Saturday getting it together.  After reminding my heart of truth, rather then sulking in circumstances, I climbed out of my pit.  Other than feeling wiped out, Sunday was a brighter day to start a new week. Our message at church was all about God doing the possible in what seems like impossible. I went for prayer at church because I need more faith to not worry about the future. I know deep inside this nervous racked mind and heart of mine that all will be well. I know there are challenges ahead but I can carry the hope because God has a plan. Just like the Jeremiah 29:11verse.
Psalm 40:1 “I relied completely on the Lord, and he turned toward me and heard my cry for help” For me this verse says that when I’m discouraged, in pain, or struggling that if I begin to do my best to turn in the right direction, Gods available help and truth comes back into focus and I can step up out of the funk and find the foundation of our faith. God is the only way, the only truth and the only life that leads to an eternal hope in each given moment.
This has been a busier week.  Jenn was scheduled for oral surgery on Monday, but when we arrived, the doctor discovered that she had an infection and it was decided to have both the oral surgeon and cardiologist decide on a plan.  Jenn’s pacemaker / defibrillator for her heart is so new, it is better to be as safe as possible. I learned, Monday that the novicane they use has epinephrine in it and that can be a concern with Jenns concerns.  I feel safer knowing they suggested to consult again. 
Jenn, as you know has, Myotonic Dystrophy and right now it also affects her heart, causing ventricular arrhythmia which is one of the dangerous types of abnormal heart rhythm. The conduction problem that Jenn has takes place in the lower chambers of her heart. Her pulse was not fast but instead low so the device helps her heartrate stay more in the 60-70s.   She also has the defib with the pacer to help in the event of emergency. They recently bumped the pacer up a little more to see how this is tolerated. Her heart care  involves the help of an electrophysiologist, cardiologist and device team. Jenn was disappointed that she could not get her oral surgery this week but, I AM SO glad that her infection is being treated and that we will have the opportunity to discuss this further at her upcoming heart appointment. Her ICD device has also moved inside her chest and I called about this concern after talking about her extractions. Since her heart care is done in a hospital setting I will ask her cardiologist if she could referr her to have it done in the hospital setting because this time she would be referred through her heart specialists within the hospital. Will you pray with us that God will show us the best plan and that she could have it done through the hospital that we are already working with.? Jenn has a vibrant personality and she can be so witty.  She is very brave to battle through many medical obstacles as a young child and throughout her life.. She is tender hearted, but she will admittedly tell you that when she makes her mind up, she can be stubborn. I share this because she seems determined to not just have the recommended extractions, but wants do the full denture route of full extraction. At her last consultation it was suggested that she get partials so that she can have something to snap into place.  She most likely, can’t properly wear an upper denture, due to the higher pitched roof of her mouth and a bottom denture is difficult to keep in and with her speech it’s not recommended.  Jenn has the final say, and she knows this, but I’m praying she can take time to consider the life ahead of her. She wants to not need any future pain or dental care, but she will always have some care with her mouth. She also struggles quite a bit with getting the adequate calories in or at the best times.  She needs to use her mouth to chew and it is recommended that partials will allow her to comfortably eating. As an infant and toddler she was tube feed and she was able to have that discontinued as a preschooler when she was able to eat through her mouth and her trach was removed early on. She was always a good eater, but something now robs her of an appetite. She looks at things right now, like many of us, and struggles to see the longer road ahead instead of the current moment. Sometimes the pain is temporary and their are answers ahead. ,i struggle too. It’s hard for me to balance between respecting my adult children’s age and how to guide and shepherd them so they experience greater stages of independence. Jenn has overcome obstacles well, but her thought processing and carry out steps is more immature.  Not everyone can identify diff-abilities so this creates challenges for her.  A recent example is she was applying for LantaVan rides that are door to door service. She rode as a teen and student, but when she was interviewed for these services recently, they noted that she ‘had’ disabilities as a child but she outgrew them., she needed to go with the intake person alone. Her life (AVAIL) coach was in the waiting area but could not accompany her in.  Jenn came out confidently and we got the decision that she does not qualify. Yet Jenn does best with familiar people and struggles with tasks where she needs to carry it out independently and do the necessary actions/steps.  She went into the interview and most-likely answered the questions with the answer that she thought were correct or that they wanted (like a test) but was not honest about her inabilities or degree of difficulties and understanding. Yes, I can try to hope she will eventually carry out multiple city bus transfer trips, but that is not the level she is at.  The interviewer she had did not address that our closest bus stop is in a bordering town and can not walk it safely, because you need to cross and walk along busy roads without sidewalk. It’s several miles away. When Jenn is asked how far she can walk, her response was, “I ran in a race and I play sports” or I’m a ‘dancer and majorette’’. She did these activities or she desires to but not routinely. She can find things on a paper map, but has not ventured by foot, too far from having support.  She is active and participates in events but is a follower.  She is talented , but she processes her activities and thoughts in a different way than culture.  Acting on her cognitive knowledge is developmentally different. Now ironically her sisters can ride this van, but both Jenn and Geoff cannot. Jenn and her brother have relevant concerns with appointments and are the two that require additional support on a given day.  I trust we can work out future transportation despite this denial. It is frustrating that disabilities are so complicated to understand for some .  Doctors, therapists and those that come along side her recognize her needs better than a brief interview.
Every human being and child/adult is different but when those difficulties or abilities are not the norm in society, it takes so much more effort for people to get through a day.  Those with disabilities are happy and living well, but have to work extra hard to get around to each activity or steps in their day.  God has always provided solutions so this will be a lesson for me to juggle with them to find where the care or support will come from for each of their adult lives,. God always provides and will continue each day, so I’m trying not to worry and simply trust, (often blindly)..
On Tuesday Geoff was scheduled for his oral surgery. He was able to get the novicane but then he was struggling with his gag reflect and fears/tears and anxiety of the procedure and he was unable to have his tooth extractions. He is unsure if he is willing to return so we will give it a bit of time, yet not too long because he is having pain.  Perhaps we will work it all out soon.
He is working a few days a week and has been doing shifts that are in the evening between 4-8pm. He is adjusting well to his schedule and has been punctual and cooperative. He has an employment coach that goes with him and meets with us in the home as well..  Geoff had pulmonary testing and for now he doesn’t meet the criteria to see a pulmonologist. He has a 1st degree heart blockage that his docs are watching and they wanted his respirations tested.  I am so glad that we will get these kids to the MDA location so we can gain more information and resources to make informed decisions.
How do you explain to your children, family and friends that although there is pain, there is a plan, but not minus afflictions or suffering. In any present struggle, I pray that there is a hope still deep down inside. We all desire a pain free life or minimal problems. I never look forward to more but if I question with “why”ning I will wallow rather than walk. I struggle to explain that Gods plan is not to give us a pain free life,.... In Jeremiah 29: 11-13 he was trying to reassure the Israelites that even though they were captive in exile after disobedience and were not home, where they wanted to be, that God has a plan and He had never forgotten them. In my quest for comfort over the years, I found creative ways to escape my emotional pain, my past, even my purpose. I didn’t want to NEED, to WANT or my flaws to be discovered. As I began to learn to thrive, in the midst of it. God taught me my need to be in control of my life and put out my own fires resulted in an attitude of believing I had things all figured out and within my control. I thought I was in charge or the planner for my future. MY plans and needs for MY future got changed. Like the Israelites, I wanted to hope that it would end. It got much much better over time but it won’t end.. Amazing growth came through persevering through struggles, relying on His strength ..., not escaping them entirely... It want working for YEARS!!!  I experienced the help I needed to not fade my future, but to let Him Into our crooked path to have HIS way in my life and my home. I hope my children begin to see clearer as they learn perseverance with those around them.. Only by taking Jesus to the pain or source of pain did results come with surprising joy because He shares in our sufferings, and we in the passion.  He is there to help us plan and to carry out His plan with others. God reminds me,..”You will seek me and find me when you search for me with all your heart.”  (Jer 29:12, 13) God wanted this captive group, the Israelites, to know that they could move on, and focus on the eternal picture, the prize,of Glory and not in the present situation they were in.. Everything will be made right, alright. Until the future unfolds, I can learn to embrace this moment with gratitude and thanks-giving within His strength.
A friend and I have been crafting once a week and it has been super fun to “create”. I also have enjoyed watching Bob Ross, the late (and great) PBS painter with Emily. Some of the women in her art class have been watching his videos on Netflix so we started to follow the videos. Emily is a great co-creator with crafts, but her own art is something that has brought her much happiness. She is now working shifts in the deli in the morning and then at front end in the afternoon throughout the week..
Britt has been called in on her days off and off she goes. Britt and I are going through a audible book together. She sure loves to read.  I’m happy they are building confidence in the workplace.
The 5 of us have been taking a night of the week to make a recipe for dinner. It’s sort of working but sometimes their work hours and activities do not coincide with the schedule so we adapt.
I have been trying to work toward repairs on our home. Some things might be simple but. I haven’t known how to attack the projects. If any one has skills with.screen doors or storm door I would like to see what my options are.. I also want to check on fixing or repairing a wooden cellar door and replacing screen windows.  My adjoining neighbor spoke to me about a roof. This summer I had the flashing done. I’m not sure if our roof needs more, because it is still slate., if you know a handy man or teen that has a knack at fixing, let me know if interested in some odd jobs, send me a message.or call.
I started an antibiotic last week and I will need to take it for a month. I have really felt stronger levels of pain and even my hands have some swelling so that is new. I met with the pharmacist again and got some more suggestions to try or speak to drs with. The rash on my face has turned into more of a periorficial dermatitis and the dermatologist is trying a few new treatments and I’m hoping it all disappears. I will be having a test tomorrow using a virtual CT study that required diet changes this week, then for Wednesday and Thursday of this week, I am on a completely clear diet.  I’m eating jello, broth, and lots of water. I have various preps that the hospital provided. I have finished the three bottles of barium.  I need to down an additional bottle of magnesium citrate for dinner tonight, then pills that they provided, more water and finally an injectable solution but they are having me drink it at 9pm.  After that then nothing by mouth until after the study.  I suspect I will be seatbelted to the seat of the 🚽 tonight.  Pray this results with the doctors  desired effects. This is one of those temporary times I will endure but I don’t want to do it for a long while!   I also am struggling with a migraine, and this happened before and I need to keep everything down. I get terrible nausea with my migraines so hopefully it will not flare up to that point. So far I’m keeping it all where it’s suppose to  be. 
Thanks for listening to my sometimes mundane mantra about ordinary days, but I  appreciate that I can voice my thoughts, concerns and hope here. 
BTW, Over the years, we have been blessed so often with kindness.  I sometimes feel bad that I don’t always recognize faces or can’t  put names to a familiar face.  Please forgive me if I either didn’t thank you or know what you shared or what task you have performed with my children or myself.  I am very grateful for the roles you have had and we can not thank you enough for the prayers and caring thoughts you share with us. Some have inspired a particular member of our family, with out even knowing. I cannot thank you enough, so I’ll give God the glory for all He has done through you.

“When we give cheerfully and accept gratefully, everyone is blessed.” ....Maya Angelou

Matthew 6:25 “Therefore I tell you, do not be anxious about your life, what you will eat or what you will drink, nor about your body, what you will put on. Is not life more than food, and the body more than clothing?  Look at the birds of the air: they neither sow nor reap nor gather into barns, and yet your heavenly Father feeds them. Are you not of more value than they? And which of you by being anxious can add a single hour to his span of life?”

Matthew 6:35 “Therefore do not be anxious about tomorrow, for tomorrow will be anxious for itself. Sufficient for the day is its own trouble.”

John 14:27 “Therefore do not be anxious about tomorrow, for tomorrow will be anxious for itself. Sufficient for the day is its own trouble.”

Luke 12:25 “And which of you by being anxious can add a single hour to his  span of life?”

Journal entry by Debby Larimer

I have been seeking and searching for the best care with a doctor that has experience with Myotonic Dystrophy or knowledge of neuro_muscular diseases that might be closer.  I was told in the Spring about a doctor connected with a Good Shepherd Home and somehow I forgot or did not know how to get in touch.  Well, I saw a post for Muscular Dystrophy Assoc. promotional page on FB and it said they have care centers for Muscular Dystrophy. I typed in my zip code expecting to see MDA Care Centers far away, but right there among the 150 locations nation-wide (6 in PA) was Good Shepherd Home only miles away. My children with Myotonia all did a work program there with Project Search.  I worked their as a volunteer helping residents with art therapy and as a recreational worker.  When all of my children were preschoolers, they all went to GSHome to see a developmental pediatrician. She has since retired. I also received my power wheelchair and had therapy here, years later. These centers recommended by MDA treat and help the lives of individuals living with neuro Muscular illnesses by using innovations in care and science. to serving as the largest source of research funding outside of the federal government—As I read this FB article it also said that they provide essential programs and services including the National Resource Hub. I could not wait to call this number.  My three oldest children will be seeing Dr Patterson next summer. I was told today that this program would not have been available, had they not already been diagnosed. I really felt that this is exactly what I needed to find for them since it is a well known rehabilitation hospital and care center.  Thank you for persisting in prayer for my desire to not only find a doctor, but one that would not require us to travel. My resources who help drive, family and friends are already doing so much to help and traveling to and from places that are farther and unfamiliar is not something I wanted to request,  Also I want to go, which I explained before is not only taxing on my body, but everyone involved.  God knew before they were my children, before these children were ever born that they would need help. That I would be searching and beseeching Him, He knew that we all would have connections that would direct us here.  “I raise a Hallelujah”!!!!  He knew the desires of all of our hearts and He trumped the desire of my heart by finding out this is a multi team approach sooooo close and the location is dear to my heart.  They take their insurances and willing to get them started. Yes we need to wait, but I’ve run into my adult children getting lost in system (in adulthood), waiting long periods for appointments and seeing someone different, seeing new doctors training, or PAs.  What I sense happening with this disease, full of unknowns, because there is no cure, can not always be addressed because of how diversely it affects them and not all physicians have the experience or knowledge of what to look for,  It’s been a disjointed way of care so I have not been at peace and wanted more for them and for my peace of mind. Praise praise praise.  The person who set up their appointments was so helpful and kind. She scheduled Jenn and Geoff together and Brittany the following week for the next openings in July.  I will need to gather info to get records and referrals but I have time.
The second recent prayer request was about oral surgeon care for Jenn. Geoff met with the oral surgeon on Tuesday and both Jenn and Geoff have appointments NEXT WEEK.  The same surgeon’s office we had been to is going to work with them, but without putting them totally out.  We did not find a hospital/oral surgeon program locally or from the numbers I was given at a distance. Either they were not taking new patients or unable to work with their insurance or I’d have to call at a later date.  Jenn has been in pain and needs at least the source of her pain taken care of, and then she can make decisons based on a plan we make for dentures or partials. We’ve already discovered that from her battles medically as a baby that the roof of her mouth may make it very difficult to do dentures that will fit correctly.  I am just thrilled we can get the process started. Jenn actually has at least 8 teeth that need removal and Geoff has 3. Pray the procedures go well and there are no complications.  Thanks for you for the care, prayers and support with the things on my heart. 💜 Brittany is much better. She  was put on an antibiotic z-pac and is back at work and has her energy restored. Emily worked in the deli in the morning and then as a cashier in the afternoon and her hip tolerated it well. It’s good to see her have this success.

i have some upcoming appointments and testing and preadmission items to have out patient surgery.. I will also have the CT colonoscopy next Friday. I’m praying that I can manage. This week I have been taking it easy because I still have had some signs of infection. My pcp doctor is watching and the fact that the up and down fevers are better is a good sign. My energy is low and I have pain that wakes me and makes it hard to sleep or get around. I am glad that I am fighting this at HOME. 
I am hopeful right now because of God’s faithfulness, peace and direction. There are some plans that do not feel as though we are spinning our wheels.
Thank you, Lord for leading the way, and also that you have the way in our lives each day. You know far better than I do what  needs to be done in each chapter of our lives. Please work in my adult children’s lives individually.  Help them to make good choices that will keep them in step with you.  Thank you for going before us and showing us or giving us peace when the dot to dots come together. The rest of your mysterious ways, I have faith to rest in this.  I have many questions, yet I will abide in your loving care. Bless my family, like you only can. Give me strength each moment and grace to keep pace with your will. I have free will with my choices, forgive me when I fall short by doing things my way.  You know I will fail, yet you extend grace and you cover it and spur me on to do try better.  Thank you for teaching me and blessing me. In Jesus’ name I rejoice, Amen
 Thank you for the thoughts and prayers of those who take the time to care, and extend friendship to each of us. I appreciate each and everyone of you.

“Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ “  Phil 4:6-7
But thanks be to God! He gives us the victory through our Lord Jesus Christ.
We ought always to thank God for you, brothers and sisters, and rightly so, because your faith is growing more and more, and the love all of you have for one another is increasing.
Give thanks to the Lord, for he is good;
his love endures forever.

Journal entry by Debby Larimer

I am writing again to share about the best ever Girls Night Out with a comedian, Sherri Lynn at our church.  A friend and I bought tickets 🎫 in advance.  Jennifer and my attendant came as well came. Jenn got a ticket at the door and it was a wonderful night we are still talking about .  I was not sure what to expect, but I was looking forward to laugh and be out with friends.
Since I seem to be getting through this infection, my days have been up and down.  My temperature goes down and then back into the 100s and I still have a few days on the antibiotic and I feel crummier at times but nothing is worsening, so I have been moving forward with appts and plans. . I am so glad I went to this women’s event because it was so funny and enjoyable. I laughed until my lungs, belly and face could not take it.  Joy becomes strength. I have learned over the past years, ever since I have been battling this disease, that if I cry, even a few tears, that it triggers a immune system reaction. My lungs hurt and it wipes me out and renders me weak and more symptomatic. I didn’t realize that some immune system diseases are triggered by stress. It can set it into motion. I never understood that but our glands and essential hormone related functions need to secrete things like cortisol, steroid related action. Also the pituitary system has been affected. But When I laugh it is not just a good chest exercise, but my body and brain feel like I gained some super power.  I asked my medical doctor about this in the past and she explained that there is constant communication with systems in our bodies. This can impact us. I have been treated for adrenal insufficiency and cushings which affects secretions. Fortunately I have been able to wean off some off one steroid treatment because my body is now creating more cortisol so this helps with the fight or flight within us.  During surgeries I get IV steroid coverage to help because we need the adrenal systems to work together to help with bodily trauma and stress. I do still use steroids at home for the restriction in my lungs. 
Back to the enjoyable evening. The event began and I sat in an area where I could see well, even when the women stood up during the worship songs to set the stage for the evening I could see. Sherri Lynn brings her own worship team and it was a treat. Then Sherri kept us all laughing for the rest of the evening.  Following the program, the snack area was still running and so as a group of women we had a snack and by the time we finished, the line for book autographs and pictures was short so Jenn and I got to meet Sherri and get a few photos before heading home. We live so close to our church, so opportunities like this are great..
The whole evening was nice, but seeing this presentation was not the highlight of the night.  It was the familiar faces I saw and the people that I came with.. Before it even started 2 very dear friends of mine that live about an hour away, just happened to hear about it and came. I haven’t seen them in about 2 years. I was overjoyed to reconnect. I also saw a woman that I grew up with when I was young.  She recognized me and asked if I knew who she was and it was amazing that I knew that face in an instance.  All these memories visiting her family at their countryside style home. She came to birthday parties, we had sleepovers and we swam and played on our visits. She had other siblings I befriended as well. Once the teen years came our busy lives changed and we would occasional hear about one another, but last night was the first time I saw her since childhood.  WOW what a blessing of a night.  We don’t usually laugh and celebrate this much joy in a church service, but last night was good, clean joy, love and bonding.
It is not easy to get out, because someone helps me get ready and gathers my supplies, then when it’s time to get in a car (of someone willing, able and genously driving), I need to transfer in the car with help. My tubes, tanks and supplies get in and situated. Then it takes time for my attendant to carefully try to fit the disassembled wheel chair and place it in the car. I need to take two extra heavy tanks with us and this is not easy to stash somewhere. Then the whole process happens again getting out of the car and again returning home,  It can make me feel awful knowing how much work it takes for those with me. Then the struggle I have to maneuver and not fall and to get my brain to connect and cooporate with my jerky movements.  It can make me want to hibernate. I used to have a car, but right now my attendants who work here do not drive and their were costly bills to maintain it, so I sold it. The people who often drive have been very gracious.  Chris, my legal power of attorney, and best friend sets up rides through an instant messager group for appointments and people have responded if they are available. This can put a strain on some relationships. I often tell people up front that they need to be very honest about what they can and cannot do because it has been hard over the years to see this happen. It becomes a burdening sense inside when I don’t know why I may not hear from someone. I want to maintain connection at levels that those who put forth the extra effort will be comfortable with their level of help.  I don’t want their helping me or my family, to hurt them.
But more recently, as I have had steady stability with my health, I get invited out. My confidence is building because of the respectful esteem I get and can give.   I’m over the moon when I’m asked. I now feel a ‘part’ of the crowd again.  I am so very grateful for the group of people who help me to do more and feel en-couraged. I am developing a close knit group of friends who call me their friend. Tuesday last week, a friend even came over to be crafty together. Even my adult children joined in on creating things as gifts. 
Tonight and again on Sunday, one of the original Newsboys will be at our church services so it’s busy this weekend for the church. 
I would not be honest if I said, it really is a struggle to control pain, to manage symptoms and to feel wiped out when I am in social situations. I struggle to support my neck muscles and it’s hard to sit.  Most of my moderate to severe pain is nerve related, but muscles get sore too.  I struggle to sing because of my lungs capacity.  I am better able to do an event like this, compared to last year at this time, but I am in distress afterwards. I will be resting, icing, breathing treatments etc. today....Hoping to regain my strength for more fun in the future.
I also really had a special connection attending this event with Jennifer, my oldest daughter. To see her laughing and greeting people was truly a delight. We couldn’t stop smiling.  My attendant from Jamaica who is funny herself, was dancing and singing. This morning she said if that praise team and Sherri were at our church all the time she would be attending things even without me.  She had a good time and while we were snacking on our pizza pie snack special for 5$, we all were talking to these women who travel with Sherri. It was a blessing for me to see my friend/attendant truly having fun and in her element.
These verse fits well.
Psalm 126: 2.
“Our mouths were filled with laughter, our tongues with songs of joy. Then it was said among the nations, "The LORD has done great things for them.”
Nehemiah 8: 10  “Go and enjoy choice food and sweet drinks, and send some to those who have nothing prepared. This day is holy to our Lord. Do not grieve, for the joy of the LORD is your strength.”

Proverbs 17:22
joyful heart is good medicine, But a broken spirit dries up the bones.”

I included a picture of aspects of Myotonic Dystrophy in my children’s faces.  This disease needs more specialists, research and a cure. I am praying it stops progressing. Dear Lord, give me faith to believe that despite this conditions you will rise them up. Give them abundant joy, peace and determination to continue working as hard as they do.  Show me what the next steps are for them and for me. Thank you in Jesus name, ...”Day by Day and with each passing moment, strength I find to meet my trials here...Trusting in my Fathers wisdom

See above picture.....These are the faces of my three oldest adult children now. They are beautifully created and loved. But these are also faces of Myotonic Dystrophy. The muscles in their eyes, mouth and jaw line show how they are working with these challenges. I’m sharing it because, like Sarcoidosis, there is no cure and it has been hard to find treatments. Pray for more awareness. It affects more than the wasting of muscles but as we learn more about it, I recognize how it evades mental functioning to varying degrees and with variable scope. It has hurt my heart to see the trials and obstacles that have gone through and overcome. They are my heroes, warriors and we are all overcomers in this family.  I would not change a thing about my decision to be a mom and adopt. I have no doubt God is using them for a purpose and plan for life.  Jeremiah 29:11 Claim that Hope and a future.

Day By Day 

Day by day and with each passing moment,
Strength I find to meet my trials here;
Trusting in my Father's wise bestowment,
I've no cause for worry or for fear.
He whose heart is kind beyond all measure
Gives unto each day what He deems best--
Lovingly, its part of pain and pleasure,
Mingling toil with peace and rest.

Ev'ry day the Lord Himself is near me
With a special mercy for each hour;
All my cares He fain would bear, and cheer me,
He whose name is Counselor and Pow'r.
The protection of His child and treasure
Is a charge that on Himself He laid;
"As thy days, thy strength shall be in measure,"
This the pledge to me He made.

Help me then in eve'ry tribulation
So to trust Thy promises, O Lord,
That I lose not faith's sweet consolation
Offered me within Thy holy Word.
Help me, Lord, when toil and trouble meeting,
E'er to take, as from a father's hand,
One by one, the days, the moments fleeting,
Till I reach the promised land.

Journal entry by Debby Larimer

want to thank everyone for praying about some very specific things that I have mentioned during this past year, because I am finding my way through the maze of doctors, tests and medications and sometimes discerning where symptoms and a diagnosis comes from. The medical maze is getting difficult to navigate for both myself and my adult children..  
I have been runnning a fever off and on since a week ago..  After I saw my PCP she checked with Infectious Disease (ID). My doctor asked nursing to come out to get a culture, but also to get it by removing my catheter prematurely, place a new one and take the test from this sample.  I had this done last Thursday and I made it through. I handled it better.  We also realized that the prescription gel used to numb the skin so the nurse can gently tug to remove and replace the catheter into my pelvis, was over two years old so the new prescription helped. It reminds me of when a dentist tries to numb your gums before extracting a tooth. It still may hurt but at least you are numb. The older gel was no longer working because I didn’t notice how old it was.  So this change had to be done twice this month and “I survived”.   I got a message from my doctor that I would need to be on antibiotics for this infection. I had been running a fever for a little over a week and wondered if a flu shot or being sick with respiratory symptoms was the culprit, but it was the infection. I’ve been on the oral antibiotic and hope I’ll feel better. I’ve needed breathing treatments more often and my rescue inhalers this past month but my oxygen saturation are not bad. I’m thankful for these things.  My PCP remarked that my arms show signs of some muscle strength. I wholeheartedly agree. I do have some upper body changes. I think when my family was bringing things down from the upstairs bedrooms, I got muscle from helping them sort through these things with them.  I also have a praise that with increase communication with my physicians that I am getting my medications sorted out. 
Right now as I write my pain is more intense and I have the achiness and nausea that sneak up on you when not well. 
With all the changes, both good and not so good changes, I do strongly want to find a neurologist or specialist who has experience treating Myotonic Muscular Dystrophy , so that we can get my family members seen. I called the local MD chapter but haven’t heard back. Geoff’s hand grip has dramatically changed. One tell tale sign of the disease that is when it takes awhile for the muscles in the hand to relax after a sustained grip. I’ve been holding out hope that the severity of muscle atrophy and weakness with Myotonic dystrophy slows down, Even among members of the same family, the illness can vary, but each generation often have more challenges. I have three children who vary in symptoms but I was not expecting them to change so much in a few short years. I feel that it is pressing to have them followed and right now I don’t see any of my children able to see the same consistent doctor with their illness. They are often cared for at a clinic and can go for each specialty once a year. Rare diseases need a doctor who knows the best options to treat.
Doctors have used this phrase when my lung and hearts began to fail.....”When doctors hear hoofbeats, they think of horses not zebras” It means that the medical field know how to treat what the common illness and symptoms are, but don’t have as much information when it does not fit what they routinely look for.
My GI doctor had concerns about the use of anesthesia if there are other tests that don’t require it. Next week I need to do a prep the few days prior, but they will CT scan study to see how if they can gain more understanding about my GI struggles  I hope they get enough info by doing this because I struggled the last time(summer) to tolerate the prep.
My insurance and home care will be changing in January.  They will be together. This will be a new system that government will be making changes with for those in nursing homes and home care with lower income. This means that private agencies will not be who I connect with.  I used Abilities in Motion to help me in past, now it will be govt’ only. I won’t understand it all until the new year, and I chose my desired  PCP. 
Today someone was hit  at the crosswalk by our home. The lights are sunken into the street. and the cars do not always pay attention. My kids had a closecall this summer. The driver was on cell phone and when they were just about across the car came within inches of the last two people in my family crossing.  They were stunned for days. We live on a busy Route for trucks and traffic because years ago they had it routed through this borough.  The road heads into the borough of  Macungie and becomes Main Street, a three lane road with a center left-turn lane that passes several homes and businesses...ours is one of those homes and I’m scared knowing how dangerous it can be to cross with unaware drivers far away when someone accends to cross, but if the driver is not looking there have been other accidents.

Pray for Jenn...Chris and I went to an oral surgeon appointment to discuss her teeth and see if there were other options. The doctor suggested options but also can not put her out for procedure unless in hospital setting due to her health.  We found very few practices to call in Pennsylvania and no local oral surgeon that does it in a local hospital so far that will even consult with us, mostly insurance struggles. Pray we can get, even just the most painful areas of her mouth cared for soon.
Geoff’s new job has been positive . He worked a few hours two days this week.  He needs prayer for areas of his life that he is struggling in. 
Britt’s anxiety is a larger struggle now then while in school. I saw a very pained look on her face one day when the anxious feelings hit her. She works with someone twice a week but I’ve been on the lookout for perhaps a Christian counselor or someone who has wisdom to share with her. She is struggling at work but holds it in. I talk with her and we read topics together but it’s not always easy to talk or work with ‘mom’ or other family member, I think moreso as an adult. 
Emily continues to suffer with significant hip discomfort and she scheduled a new appt to meet with a PCP and I hope their might be new insight. She tripped yesterday and it brought it on stronger. She works both front end and Deli and they walk about a mile down to work and another mile home. While in deli she has more pain, because she is on feet and needs to move from place to place, but as a cashier she is more stationary and is liking it. Right now she works deli 2 x aweek and cashier the other days. We have also been searching for her glasses and she has been very upset that they’re MIA. She needs them to see clearer. We are hoping they will turn up. 
Jenn’s workplace is working more because they now bake the biscuits in a special oven and Jenn has helped to measure an ingredient like wheat flour and puts this into separate containers to prepare ahead of time for when they prepare the different recipes for pets. She loves her bowling league and she played a mean game of scrabble today.

I was writing about this below as a grapple and ramble to God with question of how to love others better. Thanks for letting me share.

Love, love, love gives consistently and allows and encourages changes.. Love can become much louder then differences, distance or division. How can I reach out and touch others lives while still fully protecting mine? I can’t. If only each person could take a step and reach and touch farther and cause a rippling act with compassion and maybe the hate and hurt will not reach so far in this world.??. Why does our human mind need to overly self protect or guard ourselves and our things. How do I exchange my armor and army in order to put on the full armor with God. (Ephesians 6: 10-18) He can help me wear and apply as directed. We can be warriors and not walk away. Love does not always mean I am loving, that’s why I need to learn about doing it God’s way..not mine. We all find ways to give but its not easy..
Love can be hard to give away, that’s what makes it a truer love because someone is receiving. we lay down our needs and expectations to see whatGod can do. ,I need hope, but so do others. Love has protective qualities but it’s not control. It’s not always easy to wrap my mind around how to love with the best mindset. I believe too that I needed to know I’m loved or I will struggle to give it or pass it forward. Sometimes the lies or misrepresentations are what causes us to want to turn our backs to God and do life to please ME rather then those that pass by . I need Him...I can’t love without God. I can’t! 
 If any love does spill out of me...It is not me, it is God. I mess up and He makes up for it.  How can I have receive so much glass is full of undeserving grace, I get eager to  want to share because I others to be on the receiving end on God’s love and grace. Why do I see something as a threat when I know nothing about it. . When I break up with fear and start reaching, I can do a new see more of Jesus, God can do a new thing in you and me. Differences should not divide. “For God so loved that He gave. (Underline Gave).....  see John 3:16...His only son that who ever believes =. A better way; no distance or separation, but Life.  God has given, not taken.from us because it really does all belong to our creator ... Each breath is a gift , each day, each opportunity is a gift from a just God.  If you are reading this, you have helped me in some and I are the hands and feet of Jesus.  God is near to us. He doesn’t threaten us with unachievable rules, or goals. Do He comes to the place where we are at and encourages us to grow from a renewed mindset and invites relationship. God is love, and I can chose to reach out through my mostly mundane life. Love that can trump hate and evil.  I could also chose to blindly protect myself, walling off the world outside my community. I don’t understand and just nurture my ego or protect my little world....maybe protecting myself from hurt.  God has a purpose and it’s not what we imagined sometimes. It’s better. We are all more alike than we realize. Just saying I want to do better.. I want to do what I say as I preach to my own heart.

Journal entry by Debby Larimer

 I want to talk about  something on my heart and how my awareness is coming along. Sometimes it’s more difficult to explain about this part of my life because it just does not fit into culture as easily. People may ask (or may have asked) those hard questions in life. So many questions of why? For me....Why would God place not one, but four very unique individual (my children), with special challenges and needs in a home such as ours? Why would God be ok with a Mom that struggles medically and is differently abled to be raising 4 adult children with medical, emotional and social difficulties? I can’t even fully care for myself sometimes and I’m limited in providing for my own needs, yet my abilities, strength and heart has always had this desire.. Why would a loving God not protect these special children from the abuse of an earthly deceptive, adoptive father and wounded birth families?  Why have I hidden from God when I fall short? Why is it so hard to understand the crooked paths that sometimes life unfolds? How Lord will my adult children be able to find a place in this world, while I’m here, and after I’m gone? Some of our questions have answers while others may not get answers...or we get answers that satisfy my human mind. 
I’ve dared to ask these questions and try to lead them to a prayer in..a series of intimate conversations with our God. Along with praising, confessing and supplication..  Jesus, asked questions of His father God when He cried out his prayers in the garden and during his temptations, then the day he died, knowing the plan, he still asked his Father, why he had forsaken Him. His path is not crooked, but straight and narrow. Jesus was perfect, I am not. He reminds me that life is a journey of choices and actions, “my will, His way”.... I am learning to question Him less and ask Why I don’t follow the convictions of the Holy Spirit who wants to lead me.  I need a growing understanding of what faith. Now I question God, why are you so good to me.??? A God who provides, sustains, heals and shows me the miracle moments. He addresses needs before I even ask sometimes. He might just utter a word to confirm that His presence is near and even if I don’t have an answer, The Holy Spirit is here and in His presence there is a peace, there is joy and new levels of contentment.
It actually took a lot of my brokenness to see God faithfully sustaining me and my children.. I will always have areas of unknowns, Sometimes I don’t get it.  I may ask, how can that be true and how can this happen? Well over a decade ago, prior to my illness I asked God to help me with doubts and He has taken me to new footsteps of faith. This verse speaks to me....
2Cor13:5 5 “ Examine yourselves, to see whether you are in the faith. Test yourselves. Or do you not realize this about yourselves, that Jesus Christ is in you..”
The more I ask God to supply for needs (mine and others), the less focus I’ll place on the worlds troubles, it’s obstacles and doubts, the stronger faith becomes, and the more peace we embrace.  Letting go of my need to control,, to speak without seeking help, the more I uncover some new truths from the best source...The words from each book of our Bible. I’m reminding myself. When I have made it to church or see those who have prayed for me, I see God’s love in out the truths of the Bible.

Its not always easy for any of us to not look at our circumstances or a current situation or even our limitations and see God shining through our needs, inadequacies and weaknesses. Faith in action, can be difficult but I have seen God take my questions or doubts and work miracles with the simplest bit of faith. That really is grace. If I have a choice to feed my doubt or my faith, I want pick the later.  God has shown me that He is working in our home. My children all have medical, intellectual, and emotional areas that make their life more complicated before their feet touch the ground. When someone asks me, what I have been up to, or what do you do all day? Now. I know they might not understand that there is a revolving door of areas they need help. There is a struggle with some daily living skills. organizing simple tasks, social skills, safety, and they need reminders (so do I) They struggle more now as adults with learning difficulties and intellectual disabilities. 3 of my 4 children have Myotonic Muscular Dystrophy which affects them all differently. Right now my sons facial muscles, especially his left eye are is not staying open. His hands also have begun to clamp shut.  I do my best to guide them, listen and use my education and teacher skills to help them overcome, understand and learn new skills to help them thrive in everyday culture. Keeping up with their schedules, therapies, appointments and part time jobs is a full time job for them and it is for me,. I recognize I feel inadequate often for this job, yet I love trying to help them look at life in new ways. They have blessed me, my treasures.  They are adults so I strive to give them that respect.(but I forget).  As my health has becomes more stable, I feel as though I am trying to use this time to build on what they can do.  Amazingly, even when I was sick or away, God used others to guide them, He still does. They also have had this large support network over the years, helping them. In order for them to find their way toward some or more independence, . 

They may miss what others are saying to them or assume others understand what they are saying. Some things get taken very literally,  so they don’t always understand jokes or if they see or hear something they may not know if it is true or if it’s a play on words.  Some circumstances are hard to witness as they travel through at a younger age and now. This week my 27 year old daughter will be making arrangements and appointments to have teeth pulled for her dentures. She has struggled with serious ailments throughout her life and has a good attitude. Her heart concerns from this  genetic disease were caught and she received her pacemaker/defibrillator and has adjusted well to her diagnosis of Myotonic Muscular Dystrophy and it does not stop her. She was born at about 3 months premature and then developed larnageal papillomas at 3 mos. She had dozens of surgeries on her airway, digestive tract and needed intense care. . We adopted her while her treatment was still at Hershey. She had a trach, feeding tube, required oxygen and was a tiny little dynamo. It was love at first sight. She made me a mother. All my children beat insurmountable odds. I saw firsthand how God worked in her life through her care and her stubborn determination to keep trying and going through new phases to get stronger.  Each one of my kidos far exceeded any of my expectations. Initially, I never saw my children as any different. I saw them through the eyes of any new parent.  I believed with support they could overcome anything and I’ve witness miracles in their lives. Before and during elementary school they needed some additional services, but it wasn’t until high school that their challenges and challenges began to emerge. I didn’t ever want to recognize any labels, because I believed, with Gods strength they could do anything. I still have high hopes for their increased independence and dreams.  Services are limited after age 21and adulthood has been a struggle for them to fit in and find that direction. We located an agency that operates off a grant for now and they come into our home to offer support once a week. There is an emergency status for one of mine to have more help, but there is a long waiting list . The support and growth that has helped to propel them even further, is our Church family and community. When they are at services and events, they soak it in like a sponge. It has been a safe, nurturing environment to encourage growth.  9 1/2 years ago when we moved to this home, I had hope but I never imagined how well this home would enable us to have so much so close. It has enabled them to do more in a community that embraces difference “in possible”  ways.  But they struggle with Impulse control, maturity and decision making is a hard for them. All four stick together often, and they have helped one another with healthy competition. Their life-skill abilities do not necessarily fall into a nice line of age levels so we try to bring out strengths in all of us to care for our home and each other. Our home may not be perfect, but we are managing it. Some days are better than others. I still feel very fortunate to have a family of four children. who sense that all is well.  I am always learning how to believe without seeing everything or having a perfect laid out plan for this moment, this day or the future. Faith, is a minute by minute  practice.  Doubt for me is a debby downer....shame, fear, anxiety, and anger at a given situation is another debby downer.  Don’t get me wrong, I traveled these avenues, but what always rose me out of the pit(s) is God wooing  me back to places where I could take the right the ticket for the right situation. 

Since Sunday I am running a fever and I have had a few appointments this week. One at home and two in the offices. Today I woke up with cold like symptoms and I am hoping it clears. When I saw my PCP she was concerned about a possible kidney infection, but because there are quite a few antibiotics that I am resistant to, she wants me to check with ID infectious disease doctor. I have a praise because when I went to the GI doctor today, he decided that doing another colonoscopy might be risky because of any possible lung complications and I have another procedure where I need anesthesia around the same time. He decided to do a special CT scan and testing that can give them further information.. I also will start another medication Linzass to see if it will help.  I am also getting lower on my wean of steroids. Looking forward to being steroid_free!

Geoff started a new job today. Praise. He enjoyed his orientation and returns next Tuesday.
Emily will be working front end and in the Deli giving her more hours and more flexibility.
Jennifer rode the lanta van today to meet with them.  Please pray that this can be reinstated for both her and Geoff.  This will tremendously help with rides. 
Brittany, Emily and Geoff are all now working at the same supermarket and I’m thankful this is working out for them.

“And I will lead the blind in a way that they do not know, in paths that they have not known I will guide them. I will turn the darkness before them into light, the rough places into level ground. These are the things I do, and I do not abandon them.” Isaiah 42:1

If you read this through, thank you for listening, caring and praying..

Journal entry by Debby Larimer

I feel as though I am discovering some insight for myself. Writing it out is helping....writing on my heart.

I’m in a different place right now. I am so very thankful that my pain has been at a more tolerable level the past few days, Yay! The nurse that came seemed to change things around and the pain has turned down, freeing me up to to work with and manage it better.. I got to church again this past weekend. I went to see the film Overcomer with my family and friends on Tuesday and we plan to visit some friends in Central, Pa for the afternoon coming up? Hooray!.

There are so many people hurting and hiding in this world. Today tears rolled down my cheek, quite unexpectedly, as I read of a man of God, that I “follow” online, who took his own life. I don’t know the ripple impact it has on his family, but I understand pain, loss and brokenness.  I haven’t walked his road, but knowing he struggled to sort things out and lost the battle hurts.  Jarrid Wilson spoke out about mental and emotional awareness. Mental illness is a dis-ease that might be temporary for some, or long lasting for others. Naturally we want others to chose life, to chose to get help and find hope, but it’s not anyone’s place to judge another’s journey. 

It hit me this afternoon where I was on the real 9/11 almost two decades ago.. I was in my early 30s. That day I was battling an eating disorder and my weight had continued to drop under 100. I went to an appointment and when this doctor asked me if I would continue on the right path as planned, my answer was, “I’ll try”. She told me, that is not the correct answer. You need to say, “I will”. I retorted smugly, “I’ll try”. With that response she felt I needed help as an in patient. That day I was clueless of what was tragically happening in the world. “In there” I felt scared, alone and terribly misunderstood. I was lost and overwhelmed, i  didn’t have pieces yet, as to why I wanted to be in control of this area I didn’t know how to cope in my marriage with open broken emotional wounds.  I was able to get my weight to a healthier level and get back to my commitments only to find while I was in the hospital, the man I married to had yet another affair. I would be with him about 5 more years before I discovered the magnitude of his choices. I felt like a wife to a man with many de_man_ds. I am far from perfect but I could not come to grips with who I was when I was with him. In my marriage I didn’t feel I deserved love and I continued to drink in lies about my ‘self’.  As I learned to look more intimately and closely at who I was IN Christ I began to peel the lies off and discern that I was more than just adequate, I was really a “workmanship”, a work of masterful creativity, in. I like the word ‘handiwork’ because I see how we are made by His hands.  Ephesians 2:8-10. “For it is by grace you have been saved, through faith—and this is not from yourselves, it is the gift of God— not by works, so that anyone can boast. For we are God’s handiwork, created in Christ Jesus to do good works, which God prepared in advance for us to do.” It’s not me working but Him, in co-operation with me.  It’s that act of the will,... when we are bending or breaking it’s never pleasant. A seed in the ground is even broken before we see some results...I want to try to keep faith in front, not fears.

 I used to shed many tears, a fountain of fear and unrest, but it has been a long while since I wept over something that touched this type of tears until I read of Jared Wilson’s death on 9/11 

In Psalm 6:6

“I am worn out from my groaning. All night long I flood my bed with weeping and drench my couch with tear”. 

This was me, afraid, so overwhelmed, and not looking at what was mine to claim in gratitude in thanks-living at that given moment or that day. Prior to getting the professional help from Christian counseling, I was worrying about my past and terrified of the future. I was looking in wrong places for a quick way to switch off the confusion.  Gods truth and light was breaking through the broken pieces, where the light could shine through. Again it reminds of the Psalmist.... David knew what it was like to be downcast, depressed, sick, wounded, broken and in pain. In Psalms chapters 42 and 43 this great man of God, was very downcast. But at the same time, you read of hope and growth and his praise and gratitude for God’s care. Psalm 91 is still a favorite of mine because of the theme of protection when times are tough.    

When I was able to get around as I pleased, before, I was diagnosed, I could come and go as I pleased. I had abilities and an athletic attitude. Walk out the pain, Run away from people who hurt me; try to fly away or disappear if pain stung too much. I was a whirlwind of motion and emotion that operated off my many to-do lists, I would schedule more into a day and take on more responsibilities. I filled my days with activity. When the kids were in school, I wanted to stay out and about too if I could. . I had no idea what it was like to know true stillness. My body and mind didn’t connect what true rest was. 

The disclosure of my husbands sin, told to me by one of my children, felt like I was shot in the deepest core of me. The shock took me to a a new level of wanting to speed up and make it All Right for my children and I. I never knew what it was like to scream so loud into my pillow at night. It was all true and no one denied what had happened, but a few important people in my life wanted me to patch up my marriage and put locks on the children’s doors. I could not spend another day in that marriage. I became defeated when I couldn’t fix the pain or horror left behind. I did not know how to fill the voids of abandonment and betrayal. I tried to give material gifts to my young children or tried to arrange trips, and fill our lives with ways to escape the hollow halls of our home. As my children began to share more, I realized the relational transgression and I couldnt rewire, revive and restore what felt taken. I FOUGHT often in my own might to make sure I set the record straight. I felt healing amounts  of shame for not knowing, not seeing, not noticing, not realizing. In the end, I wanted to see justice. I wanted to know my children were protected and safe,  

Just like I was unaware of all the magnitude of dismay in our family, I was unaware of how sick my body was getting until that next heartbeat or breathe would sideline me coupled with a soup of physical ailments and pain. This was like nothing I anticipated .  To lay, listen and learn that God needed to be in control of this whirlwind of uncertainty was a larger pill to swallow then the actually pills, tests and L O N G hospital stays A W A Y from the children that I did not want to lose touch with. My body laid still but my mind was alive trying to manage each day who would care for my bewildered children.  Their trauma and experiences seemed compounded by my illness.. WHY God???? Finally a diagnosis was confirmed from the open lung biopsy and treatments started. I have never wanted this illness to define me.  I say this, but changes in our physical appearance or abilities do tend to change perspectives.  

I’ve said before how faithfully God provided support for both my children and I so I could fight my way back to some stability in our home. I felt God moving us to MOVE back to my hometown area. He took control of so many details of our lives. To this day I don’t know how that move happened????? In the midst of this time, I fought through Thyroid cancer and all I know is family and friends from the areas we lived showed up and God guided us as we landed back in Macungie. 

 I was in what felt like a much more stabilized place medically in 2010 because Sarcoidosis had only invaded my lungs and the immunosuppressive medicine and steroids seemed to be working. I never thought it could get worse before getting better again.

I had this mindset when we moved here, to hide the disease because I felt fine. I wanted a fresh start and my pride wanted me to put on my super, self sufficient Mom suit. I was driving and able to be a mom with some physical limitations but I felt strong and revived. I felt that invincibility surging through my veins. I was walking and doing life, much like everybody else. I was doing pool aerobics. I was in Bible studies with other woman and finding areas to use talents and involvement. We had picnics and parties here, and both my children and I were a part of life, included in community. On that community note....When we take part in communion, we are remembering how Jesus was broken for us.  We break bread and drink the wine together. Jesus knows about brokenness. One of his last words were essential, Why God have you forsaken me.? “Jesus cried with a loud voice, saying, Eli, Eli, lama sabachthani? that is to say, My God, my God, why hast thou forsaken me?”Matthew 27:46 kjv

When my disease returned and it was first found in my lymph nodes one Fall day, I tried to wish it away. Then the weekend before my birthday, I kept spiking a fever and my glands were enlarged. I was going out with a larger group of friends to celebrate my birthday and another friend in the group.  We went out for Chinese and then bowling. I kept swallowing Tylenol and pushed my symptoms aside. I returned home late, with my teens and went to bed upstairs. I woke up to disabiling symptoms and I had these sores in my hand. The rheumatologist oncall at Hershey instructed me to come right away. In the next few months my condition deteriorated. My spine and central nervous system were involved and I was losing muscle. I never imagined the nursing home (home wasn’t HC accessible) and I had not reconnected with the hours of attendant care prescribed from the other county.  I was challenged by this intruder in my immune system causing havoc. My kidneys, bladder and now endometrial area all with infiltrates that caused issues. I couldn’t just walk or wish it away.  Most of you know the rest of the journey because you have been the balcony people cheering me on to fight and challenge myself to rise above. People play a big part in healing. My confidence with being restored as I’m able to reconnect with others.

As I am trying to tie things together here, I am brought back to fact that there are many other people who may not have support, understanding and tools to fight.

Sharing and caring is a good way to help. Love gives....and helps others stay strong. When we lift our arms out or up and relinquish our control, it allows us to empty our_self of Self. When your arms are held up at your side it makes a cross ✝️. A cruciform or shape of a cross. At the foot of the only cross is where much healing can flow. Collectively and personal connecting to one another.

 I want to Give what I can from all that I have been GIVEN. 

“Give, and you will receive. Your gift will return to you in full—pressed down, shaken together to make room for more, running over, and poured into your lap. The amount you give will determine the amount you get back.” Luke 6:34

 Even in death we give (our legacy, we donate, leave memories)

I’m thinking living-giving for now though.  Someone might say, “Debby you are preaching to the choir because so many people have given to you. Yes, I raise and exclaim a hallelujah. I am very grateful to God and I want Him to receive all the glory. It’s not about ME or any one moment, or physical, material or act of kindness given, but looking back with the perspective where I can see how it knits all together helps consume me with thanksgiving and peace.  All my mistakes or misgiving, combined with all the good that allows you or I to keep moving in that direction...Glory.  Praise for the ongoing grace. I often want so much to return all the favors and do the same things others have done for this family but that’s God’s job to bless. Psalm 116:12, the psalmist asks this question? 

 “What shall I render to the Lord for all his benefits to me? I will lift up the cup of salvation and call on the name of the Lord, I will pay my vows to the Lord.”

 I am working with the limitations that I still have making it hard to get my body to co-operate.  I struggle to keep up and my body and mind fatigue easier. Nothing is wasted with God, because sadness, badness, woundedness or brokenness can be made into  goodness or gladness. Out of our broken places we are moved to compassion, it makes us bend and sway and break..  Many have shared kindness and co-passion with my children and I.  What a beautiful gift when our passion overflows into anothers struggles.

2 Corinthians 1:3-4

“Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God.

 I can only change me.  I can only ask God to Help me, change me so I can give up to, give back to and share the passion....ComePassion!  When I was looking into the word, comfort, I saw that it comes the Latin word, ‘with strength’  Caring for others can either make us weary or we can find strength to come along side friends, neighbors, and others we might have not have ever thought of. He comes along side us with strength and power to help.

 Even at times when I felt my weakest physically, my mind found strength.

2 Corinthians 4:17, “For our light affliction, which is but for a moment, is working for us a far more exceeding and eternal weight of glory”

My family members can speak for themselves, but could you join me in lifting them up.  Please also pass ANY of your requests or, FB, Insta or Prayer for Debby so I can lift you up.

Please Pray for Geoff’s job. He still needs to wait to hear from them to be oriented. Pray for his respiratory system and daytime sleepiness. Also to find a specialist.  He has changed so much in attitude and action. Man of God

Emily got notice that there are cutbacks in the Deli, so the manager said she could still work there but as often. The store manager then said, that she can train her to do front end. Praise!  Emily has always had left hip pain (we suspect from the physical trauma before adopted). She fights it. Sometimes she had improvement, but It is getting more intense and she had done a lot of therapy, tests over the years, has seen countless doctors, including an orthopedic surgeon. She feels it’s an invisible problem. She has an upcoming appt with a different PCP and I hope the dr listens and can direct her. 

Britt is doing well at work. She is funny, fierce and feisty. She is also shy and she struggles with social and making a friend.  She has always been missions minded. She is a good writer and fills notebooks with stories or scenes.  Pray God gives her the desires of her heart. or confidence and not fear 

Jenn is doing well at her work. She went to a dance class. She has feared failure but her steps forward are breaking that lie. Pray for impulse control, safety and anxiety. She is a woman with dreams and ideas. She has decisions to make and even though I love her, I can’t make them for her, only with her.

I’m having symptoms that I’m praying about investigating. I just need the correct. direction..It involves my nervous system and I just need answers to why or how this is changing.

Psalm 91 He who dwells in the shelter of the Most High will rest in the shadow of the Almighty. I will say of the LORD, "He is my refuge and my fortress, my God, in whom I trust." Surely he will save you from the fowler's snare and from the deadly pestilence.He will cover you with his feathers, and under his wings you will find refuge; his faithfulness will be your shield and rampart. You will not fear the terror of night, nor the arrow that flies by day, nor the pestilence that stalks in the darkness, nor the plague that destroys at midday.A thousand may fall at your side, ten thousand at your right hand, but it will not come near you. You will only observe with your eyes and see the punishment of the wicked. If you make the Most High your dwelling-- even the LORD, who is my refuge--then no harm will befall you, no disaster will come near your tent.For he will command his angels concerning you to guard you in all your ways;they will lift you up in their hands, so that you will not strike your foot against a stone.You will tread upon the lion and the cobra; you will trample the great lion and the serpent. "Because he loves me," says the LORD, "I will rescue him; I will protect him, for he acknowledges my name. He will call upon me, and I will answer him; I will be with him in trouble, I will deliver him and honor him. With long life will I satisfy him and show him my salvation." 

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Journal entry by Debby Larimer

Lord, please go before me and straighten out those parts of my life that are out of order or where I do not see the path before me. And please break the gates and cut the bars that get in the way. There is much freedom in Christ regardless of ones condition or circumstances. I need help from you to continue to walk on this road to Glory.  God help me 

So I can help myself. Thank you, that your loving, capable arms are there to help me bear what I fail to endure patiently . I desire to know you better and better until Glory, when then I will become completely better. For your glory and in your name....

Isaiah 45:2 two translations 
“I will go before you And make the crooked places straight; I will break in pieces the gates of bronze And cut the bars of iron. (KJV)......”I will go before you and make the rough places smooth; I will shatter the doors of bronze and cut through their iron bars.” {NASV)

God is making my crooked way straight?  At times in the past I wondered if God was making my mountain, the winding or crooked roads more challenging. But now I see that it is me who makes choices, known or unknown, whether they are right or wrong, they affect outcomes or circumstances and that’s how the road gets crooked. if I’m trying to find my way independently I might miss the path but God in His grace has for me. He does not condemn us. This is how Romans 8 begins. None of our journeys are perfect. I will never be good enough to not need God’s help. He is part of my past, my present and future and doesn’t need me, yet He wants me to come to Him.  Back in college I held onto Isaiah 30:21”

“Whether you turn to the right or to the left, your ears will hear a voice behind you, saying, “This is the way; walk in it.” I wanted God to get me going in the right direction. I loved working as a teacher, and even more, I felt blessed to work within leadership positions in children’s ministry and with women’s ministry. I thought God was guiding each step. Things felt like they flowed and I was on track. I never ever imagined that prior to my 40th birthday my life would change so drastically. What if God didn’t create a spouse just for me?  I married the man, I thought I knew. I loved him but that trust was betrayed in our union numerous times and ultimately his choices brought out a deprived side of him and when his betrayal involved innocent children it lead to his removal and we divorced. I have no contact or control over him anymore or who he helps or hurts, 

I am a single mom, but knew deep inside that we were all safer. His control was gone and as I was trying clinging closer to God hoping to start over and “set the record straight” . I was trying to keep up the pace, then almost two years later I was diagnosed with a disease that affected many of my organs, nerves and muscles. Intially they didn’t have a treatment so by ambulance often, I went from hospital to hospital. I was scared of the separation with my children.  This is when God showed me, ‘ I am here and even though you lost your self sufficiency, your own control, your mobility, your abilities to get your family from all the point As to Bs, I will care for these precious children and I will take care of you, Debby. 

It is 13 years later and all of my children needs are taken care of,  we learned how to do without and that has been a good thing, because in its place we have gained what feels most important. Although there are still struggles, we are all in it together living an abundant life. I desire to see my adult children move toward the confidence and joy of independence but as long as I’m here, my lifelong commitment is to do what I can.  Even though it is a struggle. I could write a overflowing gratitude book of these periods. it didn’t always feel this way.  Change and inabilities or disabilities affect the family like a mobile spinning out of control.  My children were on a path of experiencing the crooked road now yet Gods grace May seem straighter now and I want to trust down the road , I thought when they were adopted, they would have all their needs met and rich experiences. It’s like God took my wind out of I will “rescue the children” to, God saying, Debby, “Fight all you want to control the outcomes” but I AM.....I. the whole experience .  The way He kept us together when the children were young is mind boggling, It is all glory to God. In this process He brought such meaning through relationships through two in our home now and in the region where we spent 8 years.  

Now that I have some added strength, we will go to visit friends from that region next Sunday afternoon. 

If you were part of helping my troops or me, Please look at how God has used you, your talents, or your behind the scenes acts, thank you.

I hope we can how things get crooked, known and unknown,, when we are trying and when not. He comes along side and reminds us He can straighten the path when invited Him, need him to take over where I fall short. .”And we know that all things work together for good to those who love God, to those who are the called according to His purpose.” Romans 8:28.  Somehow, God in the end,  can use all the hiccups and failures for good, even when the puzzle is unclear. 

I rejoice and give thanks for a Savior working with me me to really Believe.  When I thought I had lost so ideal life, my health, my ‘self’, expectations of future. He Gave so much more. Understanding Jn 3:16 iand seeing ways God is renewing for me. 

For God so LOVED the world that He GAVE (us so much) including His only son, that whosoever BELIEVES...(our choice) in Him will have a forever home. (It doesnt mean getting an easy, disease free life)  Its entering in a new relationship with a loving father, friend, an all in all companion that is perfect, while I’m crooked with a few screws loose....God is renewing my perspective. 

I posted a photo from 4 years ago that is not meant to scare anyone, or look for judgment but this is me only four years ago. This is what Sarcoidosis, my heart  & lungs and my immune system was doing to my body, Yet God has been healing me within. My life is a reminder that God heals us from within and through out. If your health, your appearance, your mobility,  your differences , your mental status is different, you can still be growing and healing inside toward wholeness. God’s hope, comfort, and renewed strength is there. Jesus never promised a trouble-free life. No iHe didn’t promise an easy road to travel. In Matt 16:24, Jesus told His disciples that following Him. might invite more struggles. For me, instead of God preventing or promising to relieve me, God promised to walk alongside me through it and He never left me or abandoned me. (see Heb 13:5). Life involves struggles.... Jesus never promised health and wealth to those who followed Him. I was broken and I learned more about how to surrender to Him.  I’m so so rich in Christ because of what He has done in my life. He gets the glory.  I like how David sang in Psalm 16:8 “Lord, you alone are my portion and my cup; you make my lot secure “. Even if our mind and body look different or is misunderstood ..God is renewing inwardly. On earth He did not set a norm. Instead he quietly humbled himself and helped people by meeting them where they were at.

I have had a year of change breakthrough perhaps because the fluids that backed up from my lungs into my heart making me go into numerous heart failures, giving me a disfiguring look with drastic weight gain is mire stabilized. This past year, the water weight began to drop and my adrenal system began to work better to create cortisol again.. Just like I gained unexpectedly my weight now is still coming off.  A medication that was needed, I am now off.  My mind now feels freed me up to think clearly. This same med was masking other symptoms so I do have a few new symptoms/conditions to work with.  I do see from the recent picture added here that my body is set free to tolerate much more.  This is my miracle and I welcome more change, but whatever lies ahead I’m not alone. Can I also add my gratitude to every doctor, nurse, therapist, church, community, family member, friend, stranger who are a part of walking out miracles in their own life and helping through prayer, friendship and acts of kindness. All help is treasured.

Now that I was preaching and learning about my own heart, I want to update On current events

.i do think I may need a new specialist or consultant not only for me, but more importantly for my adult children with Myotonic Dystrophy. It just so happens (God-factor) that my three oldest children,who are currently battling a genetic illness requiiring similar specialist(s) so I  can hope to intervene in ways that others may not  because I am familiar with some tests and medical experience they go through. I see how we are beginning to get lost in the system and I want to make the right choices.  I prayed for support! and to see if God wanted me to find WHERE and how and who to seek out  Or stay in area?  He way of new friends....I met and spoke to one family in the spring who is affected by MD  They offered resources and have been a blessing to us. Then just last week, Brittany’s new counselor revealed to us that she has Myotonic MD as well. She is supplying us with the doctor she works with in Phiilly. She seemed relieved too, to know another family with this. I have a lot to consider and I’m asking for prayer.

Geoff also got a job !!!!! Pray as he struggles with his heart condition, SO breath, and a newer developing symptom of extreme daytime sleepiness that is a bigger factor because I can see that he is struggling to stay awake. He sees a pulmonologist in November. We have learned this is common with this.

 Pray this job will be a good match for him. I feel confident, but I have also witnessed how much harder it is for them in parts of society. Thank you to the store for hiring three of these hard working adults in different capacities.

I WAS dreading the added sensitivity of my tube change. It was very difficult but the new nurse talked me through it. The pain initially was intense but has subsided this time to a more tolerable level.  This is a praise but it is an area, my current urologist is still referring out. I need help my pain problem. I am struggling now...prompting me to write this.

Emily contends with hip pain that she tries to conseal. Pray for the appt she just made.

I’m set to attend and be in worship tomorrow. 

I was out today because it was a bit cooler in the morning and forgot my hat so my rash on my face got sunburn and the top of my head. Yikes I’m learning.

For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us.” Romans 8:18

Journal entry by Debby Larimer

I just summed up the journey in "MY Story" but now I will share where I am at today.

Tomorrow I will be home from the hospital for two weeks and I am pleased that I am more stable. I have also not had an infection for over two weeks so I have been able to stay on the Cellcept.  This drug suppresses my immune system and when I have an active infection I need to be off of it so that my body can fight the infection.  The problem is that when I am off immunosuppression my disease is exacerbatted and my body is actively attacking itself at a cellular level.  The longest I have been able to stay on these drugs since March has been a few weeks before another infection emerges.  Then while on the antibiotics I need to be off the other.  In order for it to reach it's therapeutic level I may need to be on it for months at a time versus just weeks.   
This summer I have been amazed at how well the help in the home has worked out.  Having the attendant care program from the Center for Independant Living and the other supports such as nursing and therapies that are in place have made it possible for me to stay home.  "Home" may be changing because this house went on the market last week and we are hoping that a move to the Lehigh Valley can take place (the sooner the better).  There is better acute care there and I will be closer to Hershey Medical Center and Chris who can help me with the children.
I had some physical therapy this morning while the children were at church and the therapist was able to help stand me up holding onto the walker for almost 20 seconds without my knees buckling.  My visiting nurse, Amber has told me that my lungs are diminished and there is concern about them collapsing at the bases.  I am awaiting a return call from the Critical Care Pulmonologist on what tests he wants to run to check the status of my lungs.  I hope either he or his nurse will call me this week.  I have two visits scheduled at Hershey this month and I hope I will be strong enough for the trip.  I also will see the family doctor this Tuesday.
I am trying to stay strong and it is hard not to get discouraged at times when there are so many variation in my abilities.  This morning I needed help from the therapist transfering from the bed into my power chair and then this afternoon when Chris arrived (from Allentown) I needed less tonight my neck muscles are weak so I am very wobbly and I am struggling to move my legs.  I never know how to plan or predict.  I have my bed in the dining room and I am trying to be out of the bed and in the chair for a longer period of time.  I want my sitting endurance to improve. 
Sometimes I hope that I will wake up and be restored back to the activity level that I once had a couple years ago.  This morning I cried when the children left for church because I wanted so much to be going as well.  I can't take that risk yet because I want to remain infection-free as long as I can and I also need to choose how to use that energy that I am granted for the day.  It matters so much that I am able to do what I can but sometimes I desire so much to be out of this house and involved more in the community and part of life outside these walls.  On the fourth I wished that I could take the children to a fireworks display like we did in the past.  I am trying to be thankful for what we can do together, but there are losses that I experience and many of those losses have to do with my changing abilities.

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Debby’s Story

Site created on July 5, 2009

Welcome to this CaringBridge website. It is created to help me journal and record my journey as well as keep friends and family updated since I have not traveled this road alone.Please click on "JOURNAL" and visit again to read the latest entries, photo gallery, and write a note in the guestbook.What is Sarcoidosis? It’s a disease of unknown cause that leads to inflammation. It can affect various organs in the body. Normally, your immune system defends your body against foreign or harmful substances. For example, it sends special cells to protect organs that are in danger. These cells release chemicals that recruit other cells to isolate and destroy the harmful substance. Inflammation occurs during this process. Once the harmful substance is destroyed, the cells and the inflammation go away.In people who have sarcoidosis, the inflammation doesn’t go away. Instead, some of the immune system cells cluster to form lumps called granulomas (gran-yu-LO-mas) in various organs in your body.
April 2019~
For me it began in my lungs, then a few years later my lymph nodes and central nervous system. I also had it with skin and my kidneys and neurogenic bladder are where I have struggled.with spasms, numerous kidney stone surgeries and my eyes have been affected more by Sjögren syndrome it seems...more of auto_immune soup with many symptoms. My doctors at Hershey focused more on the neurosarcoid, but after they released me to hospice, I learned after a year that God was going to give me more time.
Recently I felt I was making some progress after this 12 year battle, . Then when I came off of pain medicine, Methodone slowing last year, I started having changes with my heart and my doctors said perhaps the medicine was masking some of my sensations or symptoms . My family doctor even sent me to the ER by ambulance recently when I arrived for my appt, the nurse took my heartrate, pulse and checked if my O2 was correct. They can usually get it down with fluids but I also get confused and have burning sensation and skin gets very warm to touch. I’ve had heart problems in past but my doctors feel it is more from my lungs. I’ve had several congestive heart failures and pericarditis and a heart virus:endocarditis. I had a period of progress last Fall and I attributed it to getting off some of those meds and with physical therapy I am learning to use the walker. My setbacks since the new year are hard to fight back each time though.
I saw a new Cardiologist and a fellow dr yesterday and they ordered quite a few tests and they mentioned cardiac sarcoidosis. They also said that it may just be palpitations that may need medication or inappropriate sinus tachycardia. They did see changes in my heart within the past 4 months when it put me in the hospital or ER. I’m hoping there is a simple explanation .
I am trying not to worry and rely on the faith that things may unfold as related to another problem. How are we suppose to keep fighting when it feels like the odds can be against.
As a single mom of 4 special needs adopted adults who live with me. 3 of them, siblings,were diagnosed with Myotonic Muscular Dystrophy in the past few years. It has an adult onset. They began being dx in late teens and are all in 20’s. They are amazing and sometimes I see how much more horrible this disease is for them. My oldest recently had a pacemaker deflibulator placed and I had her sleep in a recliner by me or with me because it was the only way I could care for her initially. I’m so scared they will lose more strength and I won’t be able to care for them. God has miraculously kept us together and I want to be there for them, like they have helped me over the years and struggled through with me.
I do have attendant care, aide, and nursing so that helps me but this setback with breathing and heart rate is difficult to fight against.

Jan 2011. Please see JOURNAL to see where I am at on this journey at the present time. Four years ago (June 2007) I began a precarious journey with my health that has weakened my body but strengthened my faith. My lungs, muscles and lymph nodes is where I was first dx. with Sarcoidosis. I have also had heart related concerns as well. My spinal cord and brain are now where the disease has advanced. I am currently undergoing treatment for Neurosarcoidosis and neuro-muscular involvement affecting my central nervous system and motor function. The nature of this is a combination of nerve/ auto-immune diseases called Sarcoidosis (clustered immune cells forming in lungs and muscle fibers) and Myositis (body attacking many muscles). Because my lungs began to decline so rapidly it caused pulmonary fibroisis and interstitial lung disease and some heart related concerns. I have had pneumonia over a dozen times in the past few years and I have needed to be hospitalized too many times to count. I have been scared as I have been life-flighted and whisked away in screeching ambulances and have needed the help of different specialties and medical centers. My weakness profoundly affects my mobility. My muscles fatigue quickly. The muscles in my chest are also affected so breathing is very difficult and I currently use oxygen around the clock. I need higher levels at night or when sleeping. During more difficult flare-ups I have trouble swallowing, holding my head up, and controlling my neck muscles. I experience pain, tremors, spasm and muscles contracting. Another current health concern is the follow-up for two forms of thyroid cancer that were discovered in 2008. I have undergone surgery, tests and treatment. As a single mother of 4 teenagers with some special needs of their own, we have had to get help from others to overcome some difficult times of separation and crisis. One hospitalization lasted 10 weeks and this was so painfullly hard for the children and I. We recently moved closer to the hospital treating me and to be near family support.After numerous biopsies such as open lung, deep tissue muscle, lymph nodes and skin... my pathology has been sent to other hospitals and they have begun developing more of a treatment plan rather than treating it blindly. I have been treated with high doses of immune suppression and steroids. I made some remarkable progress, but then had the disease return with more complexities and complications. Because some of the medications used to try to stabalize are immunosuppressants they work against my ability to fight infection so I have battled back to back infections and I have to take extra precautions. I need to conserve my energy for daily living. So far my declines have been of a progressive nature but I continue to hope that with treatment I can improve. Because this disease is symptomatic, chronic and a limiting process, I am thankful that I have help to still fight the good fight and that I can continue to navigate the storms and embrace life to it's fullest. At the end of each day I have been able to look back and see God's help and faithfulness. He is choosing to sustain me and I sense His intervention and hand in healing. My life has been enriched with so many meaningful relationships and experiences. My cup overflows. Although my body is in a war, inwardly I am being strengthened in the unchanging fact that God is good and His faithfulness will never change. Visit the following websites for information on the core diseases I wrestle with I am featured on this site