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Towanda! A Rant...

Posted Apr 04 2009 12:16am
I woke up this morning at a decent time-9:00 instead of the usual 11 or 11:30. This is the third time this has happened this week.

I woke up feeling okay and better than okay emotionally. I actually felt good. And I'm still on Valcyte.

I'm also angry which I think is a good thing because it means I have the energy for it. I'm angry about the various people that have slowly dropped out of my life. I'm quite aware that I haven't been the happiest person lately. I think that's why certain people have fallen by the wayside. But the Priest?

I met with the Priest over a month ago. I asked him if we could meet again. He hesitated and then said why don't you email me (I also asked for a book recommendation) and I'll recommend a book and we'll go from there. Well I emailed him but haven't heard anything back. I keep checking my email in the hopes of some response but nothing.

More than a few months ago I was told a friend wanted to get together. During the move I saw this person and said let's get together. The look on this person's face told me everything I wanted to know. Needless to say I have yet to see or hear word one from this person since I got ill.

And there are a couple others who have just stopped communications. I haven't been the best at returning emails. Sometimes it's like that with this illness. There are times when all I can do is manage the day or maybe post an entry in this blog.

So I guess I'm at that point that all of us with this illness go through. Another layer of the old life dies. It's a harsh reality. There are some people who are not strong enough to be around someone with an illness such as this. These are the people that don't have the gumption to face some of life's realities. They need people around them to be happy. Or at least have the decency to ACT happy.

So yes. I've been grieving, I've been depressed. I'd be crazy not to be going through this process. But I'm doing something about it. I'm not sitting by passively being a victim in all this. I take whatever action I can take. When I'm feeling really bad sometimes I write about it, or I'll look at beautiful photographs on the computer, or listen to music, or read. Sometimes I curl up and cuddle with my kitty. Sometimes I wallow in self pity.

I'm tired of making excuses for why people don't call or email or stay in contact. I'm done making excuses. What if this happened to you? God forbid. What if you suddenly found yourself in my situation? What if you found that you couldn't pursue your blossoming dream career? If that weren't bad enough then you find that you can't leave the house because you are so dizzy? Grocery shopping? Forget it. Getting a haircut? Nope. Then you realize it's not a temporary thing? And then you're friends stop contacting you? And you find yourself alone and frightened and dependent. Then you come to the realization that the medical profession doesn't know jack about this illness. And those government programs you paid into since you were sixteen? Forget being able to access it without a two year fight to get the money you deserve. And then you have to spend money to hire a lawyer. It's a grim reality. Yet in spite of this all of us with this illness continue to live and even live enjoyable lives in spite of it.

I'm a baby when it comes to this illness. People who have been sick for years and years are very wise and incredibly strong people. These are some courageous people. They are the "elders" in all of this and they are people I look up to. I thank God for them.

I've spent the last year in sort of a denial. I've undergone treatment for lyme disease, babesia, mold illness, and am now Valcyte. I've researched this illness to death. I've gone to various doctor's. I've taken a self help course. I've survived the devastation this has caused to my external life.

And then there are the thoughtless, hurtful comments people have made. One person commented after hearing my doctor had died and I had to have toe surgery what in god's name has this woman done in a previous life! and something about my bad karma or my overhearing this same person say disparagingly about all my supplements good god why all these supplements or something like that. I've stood by and done nothing. Or my ex-acupuncturist telling me I need to laugh more or breath deeper or get out of my environment or that it's all in my head. Or there's the "don't you get bored?" comments. No I don't get bored. I'm too sick to be bored. I'm too busy figuring out how I can get more functioning. I long for boredom! And karma? Don't we all go down that path? I sure have thought that I did something horribly wrong to deserve this. It's awful thinking. These are some of the more benign comments.

It's bad enough that I've lost my old life. And yes I have lost my old life. I'm tired of people telling me I'll get back to it. You know what? I won't. I'm trying to get through my grief about it and then discover my new life.

I know people feel helpless when it comes to this illness. You don't think I feel helpless? I'm tired of taking care of others around this. Really I don't need anyone to DO anything or FIX anything I just need contact. It's very simple. Just contact and a willingness to be with me as I cry about this or be with me in the dark times not just the good ones.

I've been lucky that my family believes me. I just wish we were all a little closer but we're not.

I'm very grateful for my blogging group-the people who comment here. I can't express how much it means.

On another note I downloaded all the forms from Bruce Campbell's website. I'd post the link but I can't remember it and I have to keep writing or I'll forget what I want to say. Anyway, these forms will allow me to track my symptoms. There's a great one about pacing. So I'm going to learn how to manage this illness. I also sent my CFIDS doctor a form for handicapped parking.

I plan on having a good day. It's a nice feeling.
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