Tuesday, May 20, 2008


I'm sleeping more thanks to the doxepin. I've noticed that I'm getting a little agitated beginning late afternoon. This was happening right after I was diagnosed. I don't know what it is but it feels strange and it's difficult to talk myself out of it.

The doctor forgot to send the A-Bab herbs. I got the receipt for the bill today which didn't include the herbs. I don't think I have babesia because I don't have fevers or night sweats. I do want to get started on some treatment. I need to email him and ask if it's okay if I just start the minocycline. If I'm going to end up taking Valcyte anyway I'd rather get started on it sooner than later and get the whole thing over with.

I've never heard back from the director of the HHV-6 Foundation which is quite frustrating. She tells me I have viral myocarditis, asks me to prepare a case history which I did over a week ago, and then I never hear anything back. I spent a good part of the day last Monday preparing a 4 page report. This was not easy given my cognitive difficulties and fatigue. She was going to forward it to a doctor who specializes in this stuff. I sent another email wanting to make sure she received it and still haven't hear a thing. I don't get it. I'm sure she's crazy busy and I appreciate all the fear she has instilled in my about what's wrong with me. At the very least I have the name of a cardiologist at Stanford.

I've spent a good part of today confused as to where to start with treatment. I want to be aggressive and just do something. I have a feeling I'm going to end up on Valcyte. I have the medication and feel like I should just start it. I'm frightened about starting. But then my doctor (who I like) wants to try the antibiotics to rule out lyme disease-he expressed his doubts and thinks I'll need Valcyte but thinks I should do this first.

I've started the SSDI process and it's not fun. I don't like what it symbolizes. I don't like admitting how sick I am. Somehow doing that application, which is pretty overwhelming, brings it home this isn't a simple case of the flu or a cold.

Sometimes I just want to give up.

Tomorrow I see my acupuncturist. I plan on having a heart to heart with him. It's clear it's not helping. I'm frustrated at his evasiveness regarding my treatment and his false promises of me getting better. He keeps saying I'll be at 70% by summer. I'm not even at 15% and summer is just a month away.

I also see my primary care physician tomorrow. He's the one who tells me I just need to "push through this." He has no idea that I know very well how to push myself. I just can't do it anymore-I can't push my body anymore. If I could push myself I would-I would really like to have a quality life. I don't care about length anymore. I just want to go camping, hiking, visit Yosemite, and the Grand Canyon. I want to develop a relationship with my niece and nephew. I'd like to be able to drive out and see my sisters or my dad. I'd like to be able to go to Best Buy and dream about a new computer or new electronic toy. It'd be nice to be able to have the strength to sit through a hair cut. I miss my stylist in the city. I'm tired of living like this and I'm tired of no one having answers. Or, people making guesses. Or having to choose between toxic treatments that have no guarantee of success. I'm tired side effects and effects of the illness.

I could put a down payment on a house with all the money I've spent on acupuncture, supplements, vitamins, herbs, co-pays for medications, doctor's appointments, medical tests, specialists. It's outrageous. But to do nothing....I just can't do that.

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