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Tuesday, December 15, 2015
Well, it was exactly one year ago yesterday that my first sacral fracture happened. The bone marrow edema had already begun, but I was not aware of it and neither was my doctor … because even though I said I thought I had a sacral stress fracture from the CellCept (the only thing that had changed), I was told that, no, that was not possible.
I had run loads of miles on a weekly basis, sometimes 130 or more miles/week for weeks on end over years and years, and I had great bone density (I had just by chance had it checked at an endocrine visit a month or so earlier). The only difference was being put on an immune suppressing drug called mycophenolate mofetil, or CellCept. I had been on the medication for about four weeks when my right sacral ala just “went” without any warning. I went to take a step and it made a crackling sound and I couldn’t walk. That quick, that weird. The fellow in Neurology told me to “take a vacay” from the medicine and see if I started to feel better. I did. One month later, I was starting to feel better and went in for a visit in Neurology. I was put back on the medication and the four person lecture I got on the importance of compliance made me decide not to give up the fellow for telling me to stop the medication – it was obvious that giving up that info would probably be a bad idea for said fellow’s future job opportunities. Three weeks later, almost to the day, my left sacral ala did the same thing. I stopped the medication on my own that time and decided that, okay, if I get kicked out of clinic, whatever, because the treatment I was getting was making me worse, not better. I have not taken it again. But, little did we know that basically my entire pelvis had developed something called bone marrow edema syndrome. I was told that CellCept doesn’t cause that, etc. Within a couple more weeks, both superior pubic rami developed stress fractures as well.
I cannot begin to explain how painful it was to live through four fractures in my pelvis. I cannot begin to explain how frustrating it was to be told nothing was wrong, that I was not in as much pain as I said, that I was a noncompliant patient. Finally, thank goodness I have the best primary care doc in the world, and he ordered a stat MRI of my pelvis. Yup, four healing fractures, bone marrow edema throughout, incomplete emptying of my bladder … I was sent right to a pelvic ortho specialist. I am finally recovering from all of that, but I have to admit that I am still bitter about how I was disbelieved, accused of being a noncompliant patient, and told that I basically just needed to suck it up with the “pain” (well, because I wasn’t really in that much pain you know). I have been on meds to help with the edema and have had my pubic symphisis injected to reduce the inflammation. Next up is probably going to be both SI joints. At the time, though, the front hurt worse and I was having trouble peeing. Next up will be the SI joints. I used to say that the worse thing in the world was nausea and vomiting. I changed my mind. The worse thing in the world is being in pain so bad that you’re puking and can barely see or speak, but are told that you are not in that much pain and are not treated for the pain. Yup, that’s way worse.
So, it has been a year now. I am at least almost back to the baseline disabled before going through a year of pain added to it. My “baseline” with Stiff Person Syndrome is really weird. Most of the time, even walking feels “off” and like I’m unstable; my legs (usually my left leg) can cramp straight or just give out without warning and I will almost fall (or sometimes I will fall); pretty much nothing can touch my abdomen or it will completely spasm and sometimes my back will, too; I had a bout of aseptic meningitis after my last IVIG infusion and now I’m so scared to try it again that I doubt I will (especially when I was left to deal with the pain with no help at all despite going to the ER); I have a startle response to visual field things and it sucks. BUT … I can completely unexpectedly have a day or two or even three days in a row where everything works so much better that I can walk well and even joggish a little. I have had two strings of that since the terrible IVIG infusion. Today was one of those days. I actually jogged a little and did the elliptical. I am having some leg spasms starting back already tonight, though. What the hell. It was so worth it to get outside in beautiful sunny skies. And, for it to happen today was a blessing because of what tomorrow brings.
Well, tomorrow we will arrive at the hospital and check Bob in for surgery by 6:30am. He will be in surgery for pretty much the whole morning. He was just recently diagnosed with prostate cancer. It is fairly aggressive looking based on tests, so in a short six week period we have gone from focusing on my health issues to a rapid rise in his PSA blood test, twelve biopsies, genomic testing, four consultations, and now surgery. I don’t want him to have to go through all of this. We think that we have a good surgeon and a good team on board for follow-up. I hope that I can get through at least the next week or two without some kind of problem with my plethora of health problems. He is afraid of not being able to help me with an overnight low blood sugar or a sudden back spasm that puts me on the floor.
I really do feel like we have had the rug yanked out from underneath us over the past year.
I do not know if I will be fairly out of touch or spending lots of time trolling on the computer to pass time as I sit in the hospital. If you don’t hear from me, though, I apologize ahead of time. Right now, though, I have to put together my bunches of medications to bring with me to the hospital, so send any strength you can spare my way! I’ll need it!