Picking up kinda where I left off, I tried the Ritalin and it was a failure. It made me feel angry. Like really angry. Like heart pounding, flushed cheeks, rage. I suppose that it could have been situational to the kind of week that I was having, but I'm a fairly calm person in general, so I feel like it might have had something to do with the level of aggression I was feeling. No thanks. Hard pass on that one. No one needs angry Rachael, although, I'm convinced that rage is a good calorie burner, it's also good at raising the blood pressure, which is something that I need to avoid.
I'm so tired of taking all of these medications. I told my NP that my goal is to be off of them. I want off. I'm down to 5mg of prednisone, as of last week, and barring any unexpected reactions, am hoping to taper down to 4mg next week. I'm still on everything else, but hopefully once I'm off the steroids, we can start to slowly eliminate more of the pills that I swallow everyday.
I've been able to get my first round of most of my initial vaccinations (tetanus, polio, pneumococcal conjugate, diphtheria, etc.) no live vaccines yet, though. Not sure when I'll be able to get those. Right now just really focusing on knocking out all rounds of these inoculations, and tapering off all of my meds so that I can stop going to UCLA so much. I hate it there. It's the antithesis of where I live, and I've spent enough time there to last me a lifetime. Still making the trek twice a month. Ug.
In addition to my vaccines, I've also started undergoing some of the "one year" testing that they usually do following allogenic bone marrow transplants, and have had to endure another pulmonary function test, as well as a dermatological exam. (Dexa bone scan and eye exam are on the schedule for next week.) I swear to you, I used to be so shy. Now I'm so used to feeling violated - whether by questions about my bathroom habits, my menstruation, my financial situation, and my sex life, or physically - having to strip down practically naked, fully naked, or topless - that when a nurse instructs me to take off my clothes down to my panties, I don't even bat an eye anymore. Upon close inspection I was told that while the dermatologist was sure that I am above average in many aspects, I am below average in the number of moles that I have. So, ok, thanks, I guess. He also diagnosed me with "chilblains". Apparently I have some red blotchy spots that are cool to the touch, and he thinks it could be "pernio" (another word for chilblains.) According to the mayo clinic, "Chilblains (CHILL-blayns) are the painful inflammation of small blood vessels in your skin that occur in response to repeated exposure to cold but not freezing air." I don't know if I buy it, but maybe. Since it is caused by inflammation, and that is how my GVHD has chosen to manifest itself, I suppose it's possible. I just figured that my blood had better things to do than warm the fat part of my arm, like keep my organs warm, and internal processes working, but that's just self diagnosis, and I'm certainly not a trained professional in these matters. So my blotchiness now has a proper name. Prescription - keep warm. Trust me, I do my best.
I was sent for the pulmonary function test because my hemoglobin has been consistently high lately. Its been running in the high 15's, and was 16.3 at my last appointment, which is higher than normal for a woman. (The normal range for a woman at UCLA is considered 11.6 - 15.2.) I passed the pulmonary function test without any apparent issues, so right now they are chalking up the high hemoglobin to living at a high altitude. I don't know if I buy that, either, considering that it's never been that high in the past, even before CML, but since most of my other blood count numbers are "practically perfect in every way" I'm choosing not to press the issue.
Joint pain persists. Some days it feels like my left ankle/foot is broken. I've been having more issues with my feet hurting, more cramping in my feet, and more cases of my fingers "getting stuck", which apparently is most likely caused by contractures. My doctor again suggested that I try rituxan, but I'm not willing to commit myself to having to travel to the hospital anymore than I am currently, especially now, during the winter/snow season. She's also suggested photopherisis, but that also requires a time commitment that I'm not willing to make right now. So at the moment, I take ibuprofen, and I just try to endure. If things get markedly worse, I will have to submit to further treatment, as I'm not keen on having permanent joint damage. but for now, I'm concentrating my efforts elsewhere (like trying to get off medications, and not allowing my patient status rule my entire life anymore), and just trying to find a way to live with the pain and discomfort.
I'm still able to do a lot of things, I just don't have the longevity and stamina that I used to, and if I push too hard, I pay for it. During our last storm, I took a lovely solo snow-shoe hike, which pushed my current medically imposed limits, but may have been worth it, never-the-less.
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| "The woods are lovely, dark and deep." |
At my last appointment I appealed to the NP and asked her what I can do about my hair. It's so terrible. I feel so ugly. I'm looking less like Richard Simmons and Bob Ross and more like Seinfeld's Kramer, or Christopher Walken lately. Not that any of those are necessarily bad; jut not really ideal for a thirty-something young woman. According to the CDC, hair grows approximately .5 inches per month, meaning that at 16 months post-transplant I should have close to eight inches of hair. My hair is currently 3 inches on the top of my head and only 2.5 in the front. I was told that I could start taking Biotin - so I've started on that, and I can only hope that it helps. I'm still wearing a beanie/hat all of the time, and still sport a wig when I go out in public. I hope that sometime in the near future my hair gets to a place where I'm not embarrassed by the way it looks, but for now...
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| Needs more cowbell |
This year, my goal is to become less of a permanent patient, and spend more time trying to rebuild some semblance of a life beyond my transplant. Hopefully all continues to go well (enough),and the universe will recognize my intentions and comply.
