I don't even know if I can sit here long enough to type this, but I haven't really been around and wanted to post something.
I had to stop my Biaxin because it was giving me bad heart palpitations/arrhythmias. The doctor decided to give me 3000mg of Amoxicillin, which completely TRASHED my stomach OVERNIGHT. I woke up in the most agonizing pain of my entire life, like someone had stabbed my liver and gall bladder repeatedly...my whole body was shaking...I had diarrhea and felt ready to vomit. I recorded myself once I finally got back into bed and I look like a ghost in the video.
So, the doctor now said I needed a PICC line which I recently found out would not be covered by my insurance. I have been med free for two days and I feel I am at the beginning again. Two months of work. Down the drain. My heart feels literally swollen in my chest and I am having difficulty walking. I tried to figure out if this is because I'm off meds based on my log of symptoms, but I realized that I started feeling bad even before I terminated this treatment...just not THIS bad. I never though I'd feel THIS bad again.
My mom said she is 'done with me' because I won't take my medication. She does not realize my body simply cannot handle it right now. If I can barely stomach food, how can I possibly take an antibiotic? That sounds like a stupid question, but I've had to ask her that repeatedly. She said she will not 'be my bank any longer when all I do is sit on the couch and do nothing.' Does she truly believe this is the choice I have made for my life?
I needed to order my LDN today and I told my mom 10 days ago that I would need to order it IN TEN DAYS. I went through absolute HELL with her for the last two and a half hours and she just now said I could put it on her credit card. She said 'the doctor is a quack...that LDN has never done anything for you...you're still sick and I'm not paying for it.' She only agreed to pay for it w/her credit card because my dad told her he would give her the cash later on today.
I hate that now that I have finally decided to fight and to stick with it as best as I possibly can...there are other people making the choices for me. I told my mom that in her deciding to 'be done with me,' ultimately that means that I have to be done as well, since she is my only financial resource. I tried to make clear that in what she thinks are little decisions to give up, she is actually holding my life and well being in her hands.
She does not listen. I continue to disprove her point by point about her beliefs about treatment, my illness, my body, my symptoms...and once she has nothing left to argue with, her answer is "Well, I just don't feel like getting that medication for you right now."
Unbelievable, isn't it? And the funny thing is...I always said I would just end my own suffering if it got that bad...and now that I saw it could get better...I don't WANT to end it...but I have someone taking away my ability to fight for myself because they don't 'feel like it.'
I'm somewhere between speechless and screaming; I'm not sure.
Current treatment (began June 10th 2009):
Biaxin 1000mg/day, Pulsing Flagyl 500mg/day 1 Week Every Month
"Breathe. Let Go. And remind yourself that this very moment is the only one you know you have for sure."
This hits close to home: http://www.youtube.com/watch?v=5tp3Kv7hblY