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(If you want to turn the music off, click the pause or stop button above)
You're listening to "Simple Thing" by my brother, Patrick (he doesn't have a website but hopefully he'll have one soon!).
Simple Thing
Cradled myself long enough Now it's time to see the stuff I'm made of. The summer sun casts moving rays I wonder if the shadows feel they play with me.
Such a simple thing to extend ones self beyond this skin What a simple thing to extend one self beyond your skin What a simple thing.
This tie-dyed midnight masquerade Contains the basis of all I'm afraid to see. But the single grain which stands alone Will once again rejoin the stone it came from.
Oh it came from...
Such a simple thing to extend ones self beyond this skin What a simple thing to extend myself beyond this skin...
Take a little more, take a little more... Take a little more, it takes a little more...
The fading sun predicts the day As up needs down and near needs far away from here. I've tried so hard to lose my mind--I've only just begun to realize Oh, that it's not really there...
Such a simple thing to extend ones self beyond this skin What a simple thing to extend myself beyond my skin What a simple thing to extend ourselves beyond our skin What a simple thing...
MY STORY:
In the summer of 1997, when I was 15, I was working at a summer camp in Plymouth, MA. In July I got the flu but didn't think much of it. It went away on its own and I seemed to be fine. Then, in October, I started getting severe headaches that would incapacitate me for weeks, I had horrible fatigue, and depression. I went to a few doctors, had lots of tests done, and eventually was referred to a Lyme disease specialist. I was diagnosed based on my symptoms and history because my tests were negative, as they often are with people who have been infected for a long time. I've probably been infected since I was about 8 (1990) or younger.
After I was diagnosed, I was put on oral antibiotic treatment and I got better to a point. But after some complications from the treatment I stopped treatment. I managed to live for a few years without treatment but in September 2000 when I went off to college, it was very apparent that I was too sick to continue without treatment any longer. So, I found a new doctor because my old Lyme doctor wasn't working well for me. I was put back on oral treatment and eventually was referred to a doctor in New York because I had a difficult case. I was diagnosed with two co-infections (Babesiosis and Bartonella henselae) and was put on treatment for them. After this, I decided I needed to pursue IV treatment because the oral treatment I was doing wasn't helping me very much.
From June - December 2002 I was on IV antibiotics with a PICC line in my arm. As a side effect from one of the antibiotics, I developed gallstones and had to have my gallbladder removed in November 2002. I had to stop IV treatment at the beginning of December 2002 because my insurance company decided I didn't need it any longer. I made significant strides forward during these six months of treatment but I was not healthy when it was stopped.
I continued with oral treatment after stopping the IV antibiotics but they weren't able to keep me on the path of improvement and I eventually began relapsing completely. I was bounced around from doctor to doctor again and didn't find anyone who I felt really knew what to do and understood me at all. So, I kept searching for a good doctor, because I knew a good one was out there for me. In May of 2004 I found a holistic MD who uses a combination of antibiotics, herbs, and supplements. First I was treated for Babesiosis and Bartonella again since it seemed I never got rid of them. On July 14th, 2004 I had a single lumen port-a-cath (which I've nicknamed "Winnie the Port") put in my chest to try IV Rocephin again. I did three months of IV Rocephin, 1 gram twice a day four days a week. Unfortuately, I developed GI complications, including "sludging" in my bile duct which basically caused "gallbladder" attacks, although of course it wasn't my gallbladder. This means that even without my gallbladder, this medicine causes "galladder" problems so I can't be on it anymore.
In October 2004 I started seeing a new Lyme doctor in upstate NY (about 4 hours away) and began a long testing process to see if there are other things contributing to my difficult to treat case. So far, we've discovered that I have Reactive Hypoglycemia, Hashimoto's Thyroiditis, and Neurocardiogenic Syncope, all of which could be caused by the Lyme disease and other TBDs. I began taking various vitamins and supplements to help get my body in better shape so I could handle Lyme treatment again. In May 2005 I began daily IV hydration with a liter of saline with vitamins and minerals added. The IV hydration is to try to help my energy level and neurocardiogenic syncope as well as giving my stomach a break from the oral supplements. In July 2005 I started back on IV antibiotics with three months of IV Clindamycin. This antibiotic didn't help me (and made me feel worse because of its side effects). After those three months were up, I was shocked to find that my insurance company approved a switch to IV Primaxin (we had to fight for the Clinda to be approved) and I began on Primaxin on Halloween. This treatment did bring improvement and I continued on it for almost 3 months, increasing the dose after about a month, but had to discontinue it to address a severe and sudden general crash and specific serious crash in my GI tract as well as my immune system. My GI problems have now been diagnosed as Gastroparesis and I am on treatment for that with improvement.
On September 14, 2006 I began treatment again with IV Primaxin with slow but noticible improvement. At the end of February 2007 I began pulsing in IV Flagyl one week a month to get at the cyst form of the Lyme bacteria. I continued with this combo until the end of May when I switched from IV Primaxin to IV Zithromax along with the IV Flagyl and added in another med (Mepron) to treat the Babesiosis. However, side effects of tinnitus (ringing in the ears) and ear pressure have forced me to switch antibiotics again and I switched to IV Levaquin along with a bunch of new supplements to hopefully treat the Babesiosis, Bartonella, and Lyme. Unfortunately, I had bad side effects again (this time tendon pain) and had to stop the Levaquin and ended up taking about a 6 week break while trying to get through the summer so I could go on IV Doxycycline (which has some sun sensitivity as a side effect). I continued with the IV Flagyl one week a month and began the IV Doxy in early September 2007. As of March 2008 I am still on the IV Doxy and doing well with it and now doing IV Flagyl every other weekend instead of a full week at a time. I am also now on 2 liters of fluids a day instead of 1 which is helping quite a bit with a lot of things and I get amino acids and vitamins and minerals with the hydration so my infusion company considers it to be a version of TPN, although I usually refer to it as hydration.
In August 2007 I underwent further testing on my stomach and found that my gastroparesis has not gotten any better and may actually have gotten worse since April 2006 so further treatment is necessary to help my stomach emptying and severe reflux. On October 30, 2007 I underwent an upper endoscopy with botox injected into the end of my stomach (my pylorus) to hopefully allow my stomach to empty food faster. Unfortunately that didn't seem to work and I'll be seeing my GI doctor in March to figure things out better.
After a three semester long medical leave of absence from September 2004 to January 2006 I went back to school part time taking it a class at a time. I took one class at Wheelock in the spring of 2006, one class in the fall of 2006, completed an independent study in linguistics in the spring of 2007 and I have been taking various classes online through Oregon State University. I slowly chipped away at my remaining credits and officially graduated in December 2007 with a major in Human Development and a minor in theater. In September 2007 I started a job as an assistant preschool teacher in Newton, MA and moved into an apartment very close to the preschool. I am continuing to teach my theater classes down at home on Tuesday and Thursday afternoons which has worked great with my schedule at the preschool. And in February I began teaching swimming lessons on Monday and Friday afternoons which has proven to be quite an interesting experience and I'm slowly learning how to best do that as I've never taught swimming lessons before! This is beginning of a new chapter of my life and I hope to leap into it and begin to find the next path (or paths) of my life!
My life has been greatly affected by Lyme disease and the other tick borne diseases I also have. Since I have been living with it for most of my life, I often wonder what parts of who I am are really me and what parts are the disease. But, from day to day I struggle to keep on the positive side and look at each day as the possibility for something good to happen. Some days it does, some days it doesn't. Some days I make it out into the world and get stuff done and have some fun. Other days I lie in bed and watch tv, unable to even gather enough energy to get up to take a shower. But everyday I keep going. Giving up is not an option, it never will be, so I keep fighting. And maybe one day I'll find my way to health again. In the mean time, I only hope to find my way to peace.
I’m trying to tell you something about my life. About how I struggle from day to day To simply live. About how I wish, hope, pray. About how I yearn to rid myself of the pain. About how this body is not mine, Not me. I am not this body. I am simply contained within it.
I’m trying to tell you something about my essence. About my true being. About how I long to break free from this body, From this vessel that has endured so much, And be free. Fly with the wind, Laugh with the trees, Dance with the eagle as it soars through the sky, And be free. Be free to be me.
I’m trying to tell you something about my soul. About who I really am. About the way I search for belonging, For acceptance, For where I belong, For my place in this world. About how I long to feel warm, And safe, And know who I am, And know there is someone who knows me, And loves me, And will always love me. Someone who will hold me in their arms when I cry, And calm my fears, And complete my soul, My longing, My belonging.
I’m trying to tell you something about love. About how I long to look into someone’s eyes And see myself reflected back. To see myself through the eyes of love, Someone else’s love for me, Unconditional, Unwavering. About how I sometimes wonder if this exists, If there is really someone out there Who will look into my eyes And see all the way to my soul. And bring out of me all that is beautiful And hidden Deep within me. About how I want to know that I’m complete, Loved, Happy, And that I make someone else feel the same way.
I’m trying to tell you something about who I really am, About my true being, My core, My center. About how I am just energy, Just light, Pure and white and simple. About how I radiate and shine. About how few can really see me. Few really know me. Few have seen my light. About how it is protected, Deep within me. About how I’m afraid that if I let it shine free, It will be lost forever. About how I long to let it shine free, To let everyone see how beautiful it can be, How beautiful I can be, How free, How real, How pure and good.
I’m trying to tell you something about my life. About how this body is not mine, Not me. I am not this body. I am simply contained within it. --October 17, 2003
(NOTE: If you e-mail me, please put "Caringbridge" somewhere in the subject line or I might mistake it for spam and delete it.)
I have been putting together fundraisers for the Lyme Out Retreats that I have organized. I am selling Magnetic Lyme Disease Awareness Ribbons. For more info about them, e-mail me or click on the picture:
Visit my Lyme Disease Awareness Shop at Zazzle.com. You can get various Lyme Disease Awareness clothing as well as notecards and 10% of all purchases go towards the Lyme Out Retreats.
Journal
Wednesday, May 14, 2008 8:42 PM EDT
"Whatever we learn has a purpose and whatever we do affects everything and everyone else, if even in the tiniest way. Why, when a housefly flaps his wings, a breeze goes round the world; when a speck of dust falls to the ground, the entire planet weighs a little more; and when you stamp your foot, the earth moves slightly off its course. Whenever you laugh, gladness spreads like the ripples in a pond; and whenever you're sad, no one anywhere can be really happy. And it's much the same thing with knowledge, for whenever you learn something new, the whole world becomes that much richer." --Norton Juster, The Phantom Tollbooth
Hi Everyone,
I'm finally getting around to writing a real update but it may be kind of short since I have a lot to try to get done tonight for the final rehearsal of "The Secret Garden" tomorrow. So I won't really go back and drag you through things that aren't really important. First I'll give a little health update. I'm wearing myself out but the end is in sight - after Monday I can breathe easier and rest and actually have my Tuesday and Thursday afternoons back and the end of school will be just around the corner. I can just focus on packing up and moving back home which will be nice since that's really not that stressful (easier moving out than moving in, I think). My labs are back to normal so I'm not sure what the deal was with my liver. I did take a little break from the IV doxy so maybe that made a difference, who knows. Just glad it's back to normal so I can breathe a little easier in starting the Primaxin next week once things calm down a bit. I was supposed to see Dr. H (PCP) yesterday but thankfully was able to reschedule for next Tuesday when I'll have a much easier schedule and not have to squeeze the appointment in between rushing from one place to another. I've been having more trouble eating - just not being hungry and feeling more nauseous whenever I eat almost anything. But I'm trying my best.
And kind of a big thing to report is that today for the first time I went into work at the preschool hooked up to my backpack. It was just getting to the point where it was necessary and it did seem to help me make it through the day easier. And the kids really weren't phased by it at all. They asked why I had a backpack on and instead of going through the whole explanation (like I do with my theater classes when they ask) I just told them, "Because I want to." And they really didn't ask anything more than that. I was surprised how few of them noticed the tubing from the backpack up under my shirt and the ones that did notice weren't really phased by it - they just accepted that it gives me medicine. Of course I had the few kids who ended up trying to hold on to the tubing without really noticing what they were doing but overall it all went well. And this is a big weight off my shoulders knowing that I can go into work while infusing and not have it be a big deal. Makes life quite a bit easier and less juggling to get all my infusions in!
Let's see...what else...well, I guess I've just been spending a lot of time working on the theater productions ("Jackie and the Beanstalk" went well last weekend) and the preschool art show, all of which will be over in less than a week. Tomorrow is the last rehearsal for "The Secret Garden" and then Friday and Saturday are the performances. All I have to say is the kids better be living with their scripts glued to their hands because yesterday's rehearsal was horrible with most of them having major issues with lines. So they better be better tomorrow and even better for Friday! This show will be a test of whether they can handle difficult plays. I want to do "Little Women" in the fall but if they can't handle this show, I just don't know if I should even attempt that. But I'll wait and see how they do during the performances and then make up my mind.
Okay, I need to go finish up a few things, finish up my infusions, and hopefully get to bed around 10pm. It's a goal anyway! I'll try not to let too much time go by before another update. Hopefully I'll have some pictures of the play this weekend to share and maybe some other pictures if the weather is nice. Thanks so much for stopping by to see me and I hope you all are having a great week so far!
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