Tuesday, November 06, 2007


I think that sums up pretty well how I feel now. Too tired to work, socialize or even have sex(!). Never mind sex, to tired to breath properly, so I hyperventilate. I drag myself to work every day, not even showering regularly anymore, not cooking, going to the gym maybe once-twice a week. Something's gotta give cos I am not used to living that way. Maybe it has to do with being deprived of sleep or my stomach being almost constantly upset due to the new medication. yes, new meds. Just 2-3 months after making the switch from Stokrin (Sustiva) to Viramune due to the severe insomnia and near psychotic thoughts that the former induced, I had to switch to the more primitive Invirase+ Norvir, both protease inhibitors, because I was coming up detectable in my viral load tests consecutively. That itself was a huge struggle that took a few stressful weeks (OK, maybe I need to update my definition of a huge struggle). Apparently, Mr. Moody my nurse practitioner has failed to note the 1st time I was detectable in my file, and then, when the 2 other results were brought up in a staff meeting and my new doctor suggested switching me to avoid resistance, he said that I was not adhering properly to the meds. That's complete bollocks of course. Then I had to go and get a 2nd or 3rd opinion, I say I had to but it was really my dad who went through this, but even after that Mr nurse would still not let me get an appointment with the doctor. Finally I sent a desperate email to T. my social worker, pasting the 3rd opinion in there, but at the same time my dad (although I had forbidden him to) called the doctor, so I got to see him the next day. But he wrote me a wrong dose - 1000 mg instead of the standard 2000 per day. I don't know how I remembered it because I never look up doses and such, but somehow in the back of my mind I stored the knowledge that this wasn't appropriate, and looked it up. Well the doctor was duly embarrassed, especially since Dr. 3rd Opinion is a name that really impresses in this field. But all by complete coincidence, because I never even would have been seen by 3rd Op on my trip to London in August, unless the system here was so heel dragging that my neurologist appointment (for the PN) was scheduled 6 months in advance. If the Dutch health system wasn't blocked & if I hadn't met him (again dad's initiative which I was informed about later; that makes me sound like such a daddy's girl but this is the first time that he intervenes in years, emailing and making a Harley Street appointment for me), and if and if... I would've developed the resistance from hell by now. I still have to wait for the test results to prove it. I hope it won't be, I mean, there is nothing I would love right now than to get back on Viramune, with a much lesser risk of lipo and high cholesterol and gut issues... The doctor did say that I could get on a new PI, Presitza (or is it Prezista?) once I don't have plans to get pregnant. That's all it is now. Plans for the future, and pretty vague ones at that. Even though last week me & p sat at the aggressively assertive female gyn's office and were handed small syringes and cum containers, it didn't feel real. It felt like two kids pretending, and I have a feeling she wasn't fooled either. Sure, we have talked about it, or rather, I talked and he agreed to talk with me about it. But I somehow can't imagine this coming into fruition, and not just because of him. I am just so bloody exhausted all the time, if I had a child now I would just collapse, seriously. Not to mention fired - my job doesn't allot time for maternity leave (or any leave for that matter), and I may be granted an exceptional extension (which I badly need) based on my dramatically different disease, but they sure as hell won't be pleased to see me bring a child into this world. I suspect that's when the prejudice will really shine through. I mean, my boss is keeping away from me since he has found out I have a boyfriend. That's the thing I have found with a few so-called friends too, especially the ones who are so liberal HIV shouldn't even be an issue. But there is HIV, and there is having sex when you're HIV. I am not a mind reader, but I can certainly guess what they are thinking. How does he do it? How can he? Oh. My. God.
Well, the last thing that will stop me getting pregnant is my job, as uncertain as the future might be. I mean, at the end of the day this job won't even pay me a pension, or social security for that matter. It's not like I can expect lifelong employment there, although sure, it is a chance and a way in to something I am not sure I even want. But if something does stop me is this frigging exhaustion. I now I will drag my pasty, grainy, worn-out self to work...

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