So I got my test result yesterday, the ones that let me know whether or not treatment is working. It is working but it’s taking the long way around. Let me try to explain. When I first started treatment my viral load was in the 636,000 range as of yesterday it was 17. That sounds awesome, but where I was really hoping to be was 0 or not detected. Being not detected would have meant that the virus was gone from my system and that I had only about 19 more weeks of treatment.
Where the doctors wanted me to be at yesterday was not detected or >12. Being at 17 is higher than what anybody wanted, but it is low enough to say that treatment is working, and that I will continue treatment for about 43 more weeks. If at the 24 week mark my viral load is not at 0 or if my viral load is above 100 at my 12 week check then treatment will stop because it is not working.
This all means that treatment is working for now, but we don’t know if it is going to cure me. It also means that if everything goes well, I have 43 more weeks of treatment, which is 43 weeks of feeling like shit. I really do feel awful. I told my friend yesterday that it was like being 100 and going through puberty at the same time.
My joints ache all the time, especially now that winter has started. I normally have joint pain because of my CP, but the medicine are exacerbating the pain and sometimes my hips hurt so bad that even sitting causes pain. It takes me FOREVER to do anything. I was no racehorse before all this; but now, I am like earth rotatingly slow. As in you can only tell I am moving by charting the sun, taking time-lapse video, or creating some complicated pendulum experiment. My grandma could beat me in a footrace and she is in her nineties. My mind is in a fog. The other day I came home from work, fed Taden went to the bathroom, let Taden in and then tried to feed her again. I saw the food in her bowl and realized I had already fed her, but had to struggle before I remembered doing it. It was actually a little scary. Mostly, I am just having a lot more of those, “why did I come in here?” moments than usual. All I ever want to do is sleep. I crave sleep the way children crave their Halloween candy and the way smokers crave that cigarette. I need it, and I need it now or life as I know it will come crumbling down. Give me sleep or give me death and all that mumbo jumbo. On top of all that, my face looks like it got hit by truck containing the hormones of a dozen thirteen-year-olds and I am in a perpetual state of annoyance. Just talking to me at this point may elicit an eye roll or a heavy sigh.
So I am training my husband for life in retirement as well as life with a teenager. I am not quite sure how much he can take. He is stressed out and short tempered and not sure how to fix it. Of course he is thinking big. He already wants to find a house that’s easier, or move us back to the main level both of which I refuse because moving creates more stress and that first level room with its drafts and hard wood floors is too hard on my poor little old lady joints.
43 weeks as a long time. And then we have to wait 6 months to find out if it’s really gone. I will be nearly 32 then and the first 2 and a half years of my marriage will be over. Aren’t the first few years supposed to be the best? I feel cheated. I wanted to be a mother by now. I wanted us to be happily-ever-after, but instead here we sit in limbo, waiting. To say this is not fair is an understatement, but it is also completely useless, and so I will try to stay positive. Even though all I really want to do is throw the mother of all tantrums. I will keep trucking and I will try to smile even when I don’t want to. What else is there to do? At least treatment is working, at least the symptoms are not worse, at least my system isn’t tanking under all these medicine. At least I am still (mostly) sane.
At least, as always, I still have my amazing family and friends to support me through this.