Bonus Round Patient Pages
Encouraging patient/doctor/caregiver communications


September 19, 1999: I Can't Win.


Dear Sparky,

I'm dead tired.

I realized that somewhere on this site (I'm far too tired to find the URL (because I don't remember what I name files or where I put them) and then type out the link to the page...) I say that I don't want the letters to be like a normal "journal".

This entry is exempt from that statement.

I've been working sixteen hours this weekend, and that's how much I work in a single week. I go to school full time and I'm getting over a sinus infection. But I'm not whining... I'm telling you why I've dropped of the face of the earth.

If I were whining I'd talk about how work is insane and when I came home today and thought about all that'd transposed this past weekend made me want to cry. I can't go into details because someone reads this page who would tell whatever I wrote here to my co-workers and I don't want that. So, Sparky, you'll have to get by without ever hearing anything tangible about my co-workers or my workplace.

(Side Note: This person is also the only person from my 'real life' who reads this journal. He (to my knowledge) still reads these letters because I've realized that I have no right to tell him to not read them. I put them on the internet and he can read them if he so desires. It's just irksome.)

As I've been stealing a few minutes here and there I've been writing small letters... none of them are any good (neither is this one but we won't get into that). Which makes me mad because SO much is happening to me but I feel like it would take days to attempt to explain it all.

I also, for some reason, feel like crying. Which is only somewhat work-related. Lately I've been plagued by the thought that I'm not healthy enough to handle a part time job, school and this disease. My health is slowly but surely declining and I know that I'm not paying enough attention to it and that eventually, probably sooner than later it'll spiral out of control and I'll end up in the hospital or something.

But yet every fiber of my being is fighting that notion... I love school and, aside from my griping, I love my job, I don't want to have to give either up. I tend to get discouraged when my disease interrupts my "life". It's not because I don't like the reminder that I'm not normal or at least like most other kids, I've gotten used to that. It's mostly because I have things that I want to do with this life, and I do my best to achieve those goals... until my disease comes along and mucks everything up and I realize that it will always be mucking up whatever I attempt to do with my life.

It makes me want to cry--and I haven't gotten emotional about this disease in ages but I just get so sick of it sometimes (no pun intended). It exasperates me. I try to do everything I'm supposed to do, I take my meds, I eat a relatively well-balanced diet and I even go to bed at a decent time and in spite of it all my disease still insists on giving me trouble. I feel like that no matter what I do I can't win.

You know from these letters that when I'm upset I do my best to make myself happy... I read a good book, I look at pictures that remind me of happier times, I play REM... but right now I don't feel like making myself happy. I feel like opening myself up and allowing all of the pain, frusteration, hurt and anger flood through my entire being.

Then letting it go.

I'm going to go have a good, healthy cry and then I'm going to take a nice long bath and perhaps cry a bit in there as well. I feel like crying. Perhaps I'm PMS'ing, perhaps life has finally gotten to me or perhaps I'm so tired I can't even think straight enough to realize that I've got it pretty good. But whatever it is... I feel like crying.

Afterwards I'll write a fluffy story, listen to "Up" and read one of my beautiful new books. And I'll feel better. Before I wrote this letter I read a quote in one my books:

"As there must be rain with the sun,

To make all things good,

So must we suffer pain with our joy,

To know all things."

--Ray Buckland.

It was in a much prettier context than this letter but it made me feel a momentary well-ness. I worry so much about experiencing all that life has to offer and I sometimes forgot that life has bad to offer with the good--and that by experiencing the unpleasant I'm only getting what I wished for, to experience everything.

And I sometimes forget that for being only eighteen years old I've experienced a lot of everything's...

Love you lots,


Previous ~ E-Mail ~ Main ~ Next