March 3, 2014
I will admit that for more than a dozen years now, I've found HIV utterly fascinating.
I have to be very careful here with my point in this post because I don't want to offend. I have always had a dark, shadowy, quasi-romantic view of those with HIV. Like. Dracula. Or The X-Men. They're mysterious ... and social outcasts.
Now that I'm adjusting to initial med regimen, I can see how NOT sexy HIV is. Plus there does still exist that "pariah" angle because a lot of "Americans of a certain age" were indoctrinated with AIDS education -- making it more difficult for them, in modern times, to see HIV-positive people AS people (I maybe have my own damage to draw from: I dumped a Millennial years ago for telling me HIV-positive people needed to be segregated and ostracized by society at large; shocked at the lack of historical sensitivity).
As stated prior, there was a 3-week lag between my diagnosis and actually starting meds (Truvada/Tivicay, if you're wondering). This was due to holidays and Polar Vortex. The 3rd appointment I had with my doctor regarding all this (1st being noticing something's up and getting tested, 2nd is diagnosis then being sent to get a TON of blood taken, 3rd being when you take a specific look at your lab results), something changed.
YES I have a good doctor, but after going through the liver panel, the CD4/viral load count, et al., I began to feel ... less afflicted, and more like I was being initiated into a new club.
That's what HIV is: a new club, a subculture with its own memes (check forums on Rx side effects if you don't believe me), and perhaps something that scares me more than I care to think about: a brand new closet to come out of. Definitely more on that closet in the future, but that appointment just struck me as funny. Well, maybe not so much funny as "oddly encouraging."
1) My doctor insisted on my pursuing relief via the Family Medical Leave Act of 1994. I was a kid when Clinton42&Co put FMLA through, and it might actually be one of the most important bills passed in my lifetime. It basically holds your job (with or without pay, depending on the culture at your company) for you. They can get a temp, but you cannot be fired due to a medical condition afflicting you or yours.
The way he explained it to me, it would be through May. Seems long, but this is just in case my body rejects my current cocktail and I have to switch and get used to something else. Again, he told me it's entirely possible I'll be "back to normal" come springtime.
Also: This isn't full-time vacation time off. It would be for a handful of days every couple weeks, to cover the inevitable mornings I need to be chained to my toilet, for example (that's about as graphic as I'll get here).
2) I touched on this briefly before: There was a delay between diagnosis and starting meds. After discussing different cocktails (NO mental health/sleep side effects permitted), I was ready to head to the corner Walgreens and get started.
"You could do that," my doctor said. "But since as of now you're going to be on these pills for the rest of your life, let's get you set up with this voucher card so you'll never be charged. You have enough to worry about -- paying for your medicine shouldn't be one of those things."
This ... is a HUGE deal. This humanity is the difference between a book-smart crackerjack-box of a doctor, and a doctor who has lived in the real world and has had to juggle obtaining those booksmarts WITH streetsmarts (this is why I always prefer my doctors gay -- that coming-out process doesn't happen while studying for an exam). I am not certain if either the Die-Off affected my doctor personally ... or if he minored in Social Work. In either case, I am grateful.
This Voucher Card: I asked if HIV meds were available yet as generics. Doctor shook his head. Big Pharma won't make your life-saving meds cheap, HOWEVER they will give you this voucher card meaning you never pay for your HIV drugs. This is a head-scratcher, even more so after discovering my T/T regimen would be $120 a month sans insurance.
So that appointment made me feel special. Like, "my parents got divorced so I have to leave school early every Thursday afternoon to go see my shrink" special. I was not anticipating that "Vampire Initiate" feeling so soon.
To be honest, it's nice. I WILL take advantage of FMLA, because it's there to be taken advantage of. I've heard many horror stories about initial adjustments to anti-retrovirals, and I CANNOT imagine working retail/foodservice through this experience ... ugh.