I owe phone calls and emails but instead I'm using my energy to write here. I'm having a lot of neurological symptoms and writing here is easier somehow. I have my ipod on listening to calming music.
I've reached a new level of feeling ill beginning Friday. It was horrible on Sunday. So badly that I stopped all medications, supplements- everything. And then left a message for my doctor Monday morning.
Saturday morning wasn't so bad until I took one of the methylation supplements-the neurological health formula. Within 90 minutes I developed a bad headache and went downhill from there. I was scared on Sunday. I can't describe the feeling. I felt (and feel again now that I'm back on antibiotics) a headache, weak, beyond fatigued, confused at times, woozy at times to the point of feeling faint, lack of appetite. Those words don't do the feeling justice.
So I stopped all meds. This morning I heard back from my doctor who said "we're on the right path. Keep taking the anti biotics and Anti Babesia Herbs. Stop the methylation supplements for a couple weeks." I was feeling a tiny bit better until a few hours after restarting the antibiotics.
In spite of it all I tried to go to a lyme disease support group meeting in Berkeley. Even though getting dressed and walking the short distance to the car left me feeling faint while also breaking out in a sweat. Luckily I wasn't driving.
We made it to Berkeley. I walked into the building feeling woozy, my gait unsteady. I couldn't go in the elevator because of this horrible fear of getting stuck. The fear is unmanageable at this point. I decided to use the stairs. The sound of the door slamming shut behind me as I tried to make my way to the basement made me jump. I saw some chairs and sat it them. All this time I'm trying to figure out if I should try to push myself or not. Even though my body was clearly sending me signals that it's not the right time to be out of the house. I found the conference room but walked by. I sat again in some chairs then decided it was too much and started to make my way back towards the front door. But where was the front door? I got confused and lost in a different way than before. I made it out of the building, got in the car, and burst into tears. I don't like this one bit.
The only good news is that the antibiotics are killing bacteria. How long this will last I have no idea. It's frightening. In the meantime I wait for more test results that will hopefully point the way towards more treatment. My fear is that I have the type of babesia that is most difficult to treat-babesia duncani. It originated in Washington state.
I'm trying to shift the focus away from this illness while also doing the necessary education regarding this disease. I'm more and more clear I have lyme. I wish I didn't. I'd almost rather have cfs and take valcyte for 6 months and get better. A part of me has been in denial about this. Preferring to believe that my doctor is wrong.
I emailed one of the people on my dissertation committee yesterday to explain why I dropped off the face of the earth. We had been trying to schedule some time to get together to talk about my starting to write and get published. As I got more and more ill it kept getting pushed to the back burner. Then it got to the point where I didn't want to deal with telling her how ill I am. I don't know why that's hard to do but it is. She was glad to have heard from me and wrote that she wasn't surprised that I got sick given my topic and the fact that I had to live in the liminal space between life and death in order to write the way I did. I have to say it's a beautiful dissertation. But it's painful. I have my copies tucked away so I can't see them because they remind me of a life I left. I plan on getting a copy out and look at it anyway. I'd also like to get into contact with the other two members of my committee. Maybe I can make a stab at writing a short article. I would need an editor though. Even writing in this blog is challenging.
In the meantime I found out my dad's prostate cancer has reoccurred. He saw a new urologist in Utah last week who made the diagnosis and also started him on treatment right on the spot. He sounds like a good doctor. I haven't spoken to my dad yet-I've been too ill but I'll see him this weekend.