I'm behind in blogging. It's been an interesting 10 days or so. I hesitate to say this-it's like tempting fate, but I don't feel that crushing fatigue that I did after moving in here.
I would say that I'm back to where I was prior to the move plus 5-10%. It's also been very sunny and uncharacteristically warm. I'm noticing that my illness fluctuates with the weather. For an interesting read on barometric pressure and its influence on those with chronic illness go to this link: http://www.lemon-aideonline.com/ (see barometric pressure). It's quite fascinating. People who have suffered from mold poisoning also find they respond to fluctuations in weather. The theory being that changes in barometric pressure allows mold spores and mycotoxins to be released into the air.
On Weds I decided to go for a drive to the local cemetery. It's very beautiful. Instead of feeling peaceful I began to get filled with anxiety as I navigated an unfamiliar road that seemed to be leading away from the entrance rather than toward it. The cemetery was closing at 5 and I feared I'd get stuck in the back roads. Not that I was very far from the entrance-maybe a couple miles. Far enough so no one would notice if my car broke down. I kept driving-the road was too narrow to navigate turning around and the last thing I wanted to do was damage a gravestone. My anxiety was bordering on panic which made no logical sense. I had my cell phone. I kept driving and suddenly stopped my car. About twenty feet in front of me were 4 deer stopped still in there tracks waiting to see if I was a predator. They were beautiful. I love deer as well as their symbolism. All 5 of us waited for the others to make their move. I sat quietly in my car softly whispering to them that it was safe to continue on their journey. And that's what they did. And I knew everything was going to be okay. It felt like a gift to see all 4 of them standing there.
And where I live there are these beautiful Robins that keep coming by and sitting on the tree outside the window. On the back porch hangs a hummingbird feeder where I can sit outside, read, drink tea, and watch for the hummingbirds.
I spoke with my cfids doctor on Thursday. I thought my appointment was Friday so I was both surprised and unprepared for his phone call. We talked about the available treatment options for me at this point, my lack of money, and what was feasible. He still thinks I need to take Valcyte. He said out of everything out there right now this is the one that might be the "homerun." He said everything else might be a base hit. So I'll start Valcyte on Monday. I'm just going to do it. It's not a guarantee by any means. Trying to treat this illness feels almost like the old gameshow where people would have to make a choice between three doors hoping they don't get the "booby prize." I'll choose Valcyte and hope it doesn't make me worse.
I talked to him about antidepressants and the doctor appointment I had where the doctor wanted to diagnose me with MS or some other slow virus. He was appalled when I described what happened. Unfortunately he didn't have any recommendations for me.
We did have an interesting conversation about death. I wanted to continue it but I was paying by the minute. I told him about Dr. Kliman and that I'd hoped his death wasn't as horrible as it sounds-to die alone in an elevator shaft. Ugh. It makes me so sad. My cfids doctor said he's seen some amazing things. People, when they realize they are going to die, might get fearful for a little while but that is soon replaced with an entry into another world that is beautiful and peaceful. He said he's witnessed this many times. The picture I have on this blog is a woodcut made in the 17th century and is of someone entering another world.
I think it's possible for those of us with chronic illness to enter into this place.
My doctor also said there is a new treatment about to be made available to doctors. It's some sort of stem cell signaling factors. I've been injecting myself with this thing called Cell Therapy for the past 4 months but it hasn't done a whole lot. I'm hoping the new treatment will be helpful. I know Dr. Cheney was working on something like that with pretty good results.
I started on Amantadine which is an antiviral and also a dopamine agonist. Dopamine levels can be low in people with cfids. It's also used to treat fatigue in people with MS. We'll see. Hopefully it will help.
I started the self help course on Monday the 12th. I don't know what to think of it as nothing has happened but introductions. I think I was expecting it to move at least a little bit faster.
I sent my introduction email to the wrong place. I was a bit surprised at finding out where it went. I guess they are used to cognitive slips. I'm sure it didn't help much when I sent another email telling them I also gave them the wrong address so who knows where the book will end up.