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(If you want to turn the music off, click the pause or stop button above)
Well I've been out walking I don't do that much talking these days These days--
These days I seem to think a lot About the things that I forgot to do And all the times I had the chance to
And I had a lover It's so hard to risk another these days These days--
Now if I seem to be afraid To live the life that I have made in song Well it's just that I've been losing for so long
Well I'll keep on moving, moving on Things are bound to be improving these days One of these days--
These days I sit on corner stones And count the time in quarter tones to ten, my friend Don't confront me with my failures I had not forgotten them
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 some 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 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. The Doxy did seem to keep me stable but I didn't really notice further improvement. However, when treatment was stopped (there were a few interruptions) I would get significantly worse so the treatment was necessary.
When the summer rolled around again, I switched from the Doxy back to IV Primaxin, which I had trouble tolerating. Later in the summer I tried an IV antibiotic called Claforan for the Lyme and tolerated it well but after a month I suddenly developed a full-body rash which was a reaction to it, so I can't use that anymore. Just another bump in the road, I guess. Unfortunately over Memorial Day weekend I got sick with high fevers and more GI problems which continued through the summer and into the fall. The fevers usually got over 103* and sometimes as high as 105*. Testing was positive for Babesiosis for the first time ever and it seemed that was what was causing the high fevers and other problems, including worsening anemia despite iron supplementation. Babesiosis is similar to Malaria so that seemed to fit my symptoms. Over the summer I began treatment for it with IV Zithromax and Mepron as well as an herb called Artemisinin but I did not seem to show improvement. The fevers took a lot out of me and I slowly got worse and worse until I was finally admitted to the hospital on November 5th. I spent almost 10 days inpatient at Mass General and after a few days my blood cultures grew staph so I began treatment with IV Vancomycin, had my port-a-cath removed, underwent extensive pulmonary testing after spots were discovered on my lungs (all the tests were pretty much normal), and eventually I had a PICC line placed in my right arm to finish the Vanco and continue with my other IVs. I had to stop the Vanco a little early because my white cells and ANC dropped critically low (a possible, but not very common side effect of the Vanco) and later I developed a rash very similar to the one I had with the Claforan so I can also not go on Vanco again. In February 2009 I had a new, double lumen port-a-cath placed and the PICC line was removed. As of June 2009 my treatment consists of IV Doxycycline at a higher dose than I was previously on, IV Flagyl pulsed in for 1-2 weeks a month, and a multitude of supplements and medications in oral and IV forms.
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 we are rapidly running out of options. There is a possibility that I might have surgery for my reflux and gastroparesis but for now I am just dealing with the symptoms because I want to avoid surgery if at all possible. I'm 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.
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 taken 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 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. I just finished my second year at this preschool and have a job beginning in the fall at a preschool closer to home which will greatly reduce my commuting time for my theater classes and generally make life easier. This has been the 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'd rather be struggling to fly than standing on the ground watching all the birds above me.
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.)
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Journal
Wednesday, December 30, 2009 11:34 AM EST
"Certain thoughts are prayers. There are moments when, whatever be the attitude of the body, the soul is on its knees."
--Victor Hugo
Hi Everyone,
Just a quick update today (and I mean quick this time). I'm doing okay, although struggling with fagitue and headaches more than usual. I'm on vacation from work until the 4th but I've been doing a lot for a vacation so I'm pretty worn out. Hopefully the rest of this week will be a little more restful and I'll feel a little less tired by the time I go back to work on Monday.
My Christmas was good. I spent part of the day with my family and part of the day with Eric and his family which was nice. It's so interesting how Christmas traditions change as the "kids" of the family get older. It was nice to spend the day with everyone I could that I care about. Eric's present to me was tickets to see Wicked on Saturday in Providence so I'm really excited about that. I've wanted to see it for a long time so I'm really looking forward to it. And we're spending the rest of the week together so that will be really nice, too.
Things with Eric are going really well. One thing I wanted to mention is that he was diagnosed with Lyme disease. That "flu-like illness" that he had back just after Thanksgiving was apparently the beginning of Lyme (a little red flag did go up when he got sick but I was trying really hard not to push my Lyme fears on him). When the "flu" went away, he still had headaches and this weird eye thing that wasn't going away so he finally went back to the doctor who ran Lyme tests among other things and both the titer and the Western Blot came back positive. After just the titer came back positive, the doctor called in a prescription for three weeks of Doxy and after the WB was positive said that if Eric wasn't feeling totally better after the first week of Doxy, it would be extended to 4-6 weeks. So I'm okay with his doctor - he seems to be doing a pretty good job and I hope and pray that this was caught early enough. I guess at least he has me to make sure he gets the treatment he needs, but in some ways I feel cursed that the people around me end up with Lyme. I know it's not me that's doing it, but I can't help but feel that way.
Okay, that's it. I need to get dressed and go run some errands before heading to Eric's to hang out with him and some friends of his this evening. Hope you all had great holidays and hope you have a great New Year celebration! I'll see you in 2010 since I doubt I'll be updating before then.
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