Monday, June 23, 2008


I'm embarrassed to admit how much I can relate to this character right now. Reading his blog was hilarious. I'm not going to list the link though...

I don't have perspective right now. I'm aware that I don't have perspective but that awareness just doesn't help. I feel like I'm starting over with the herxing but it's the mood ones starting in again and I find that the toughest. Also, the heart palpitations are a little freaky but that goes with babesia.

My brain isn't working right again so the cognitive herxing is back. I lose things and start to look for them. Soon I forget I've lost them but by then I've rediscovered something I lost earlier so I'm content. For the moment. It's just a bummer when I've lost something important and then forget about it.

I don't have access to my coping methods of running, working out, shopping, seeing friends so I have to find other ways to cope. I've discovered some other things to do but when this mood stuff happens the thing that is the quickest fix for me is being physically active.

Right now I'm listening to music on my ipod which helps a little. Talking about things helps. Writing helps. But nothing takes away that inner sense of despair I have about dealing with all this. In the back of my mind I know I need to wait this out because it will pass but in the moment it doesn't feel like it. And it feels unfair to throw in the shoulder thing on top of it. I don't want to have an MRI and I don't want to have surgery. If I wasn't so dizzy I'd like to throw a temper tantrum about it all.

I got my check from the IRS. It's a third of what I was supposed to get. Somehow that felt like I failed. It's completely irrational.

I was reading through the book: Diagnosis and Treatment of Babesia: Lyme's Cruel Cousin-The OTHER Tick-Borne Infection. Along with a spotted rash (which I had last June while staying in Guerneville) it lists the following symptoms: dullness, listless, chills, sweats, headaches, fatigue, sleep more than 8 1/2 hours per day. The books lists the 79 symptoms that are used as a diagnostic guide for lyme disease. I have 52 of them.

It lists some emotional symptoms including depression and anxiety. Other emotional symptoms include primitive emotions, trouble finishing tasks, distractability, stress with transitions or change, spaciness, regressed feelings and thoughts, and others. This things are above and beyond the normal life stuff.

I'm trying to get out of denial that I have this. One would think that reading about it would provide me with a sense of relief. It did yesterday. I'm unclear about everything today including this diagnosis.

The results came out about the Valcyte study done by J. Montoya, MD. Not as promising as it initially looked. The results showed only a 10% average decrease in fatigue levels though it did show a significant increase in cognitive functioning. I still don't know all the details but it is hitting some people in the CFS community pretty hard.

I'm glad I've been spared going on Valcyte. Hopefully I won't have to do an antiviral at all. I'll retest the viruses in a couple months.

This treatment is long and it's hard. Today I wanted to give up. But what does that mean really? I can't give up. Actually, I can give up and I do know what it means but I choose not to. Sometimes it's a purely intellectual choice.

I just wish I could get a medal or a ribbon like I used to when I would win swimming races, for surviving the day. A prize-that's what I want. Today would be a good day to get a prize.

Or I could just say fuck it and purchase that Dell computer-it's the XPS 1530. Midnight blue. I build it everynight. And then I would be Flight Simulator X and pretend I was flying. And I would also buy Spore and build my own little universe where I'm not sick.


linda said...

I don't know how I came across your blog unless it was looking at CFS and valcyte google results...anyway, me too on most of what you have and I am on valcyte. I was not clear by your post if you are but if you are, I am interested in how you are doing. If not, I want you to know you are not alone and the more we YELL about it, the better...the more the better in getting the public to notice that tomorrow it may be them! Happy to meet you but wish the circumstances were different.

Anonymous said...

Hi Linda,

Thanks for stopping by and leaving your comments. I'm not currently on Valcyte although I have the pills in my cabinet. At the last minute my doctor wanted to try a 6 week course of antibiotics to see how I react. It turns out I have lyme in addition to the viruses. I glanced at you blog. Absolutely beautiful artwork-very soulful. I will read and leave a comment there also. Happy to meet you too!