I was busy getting into the rhythm of school last week, which is why I didn’t blog then. I had an appointment to get my blood drawn on Thursday and a therapy appointment last Wednesday as well. I got my letter for the Disability Support Services at UAH. It requested a few accommodations. I asked on Thursday for some physical accommodations written for my Fibromyalgia, Arthritis, and Migraines from my family doctor. His response? Make an appointment with the nurse and have her write up a letter, then we’ll talk about it. Among those, I would like to get a handicap parking pass because, if you’re not familiar with either of the first two problems, they can make walking like hell on someone who has either of them. Walking just a few yards is difficult. Add in the fact that I’m carrying a messenger back with 5 notebooks and about 10 books, it puts a great deal of strain on my body. I know it sounds whiny for me to complain about something so small, but it’s very difficult for someone with chronic pain to have the pain intensified, even by the smallest margin.
Speaking of an increase of pain, I did something stupid on Saturday evening, which led to more pain on Sunday and aggravated all of my pain senses. I decided I would play Civ IV on my dad’s computer while he was sleeping, since he went to bed early. Well, I got on at 11:00 PM. I thought, “Oh, I’ll get off at 1 and watch Doctor Who again.” My mom turned the TV off at about 12:30, so I wasn’t paying attention and I didn’t want to wake her up, as she sleeps on the couch. (It’s easier on her back and it’s easier on all of us if she sleeps in the same room as Willow; Willow has to sleep in the living room because that’s where Willow’s chair is located.) Well, I thought at 12:30 I could last until 1:00, and at 1:30 I was still on and thought I’d get off at 2. I thought since I’d made it to 2, I could go to 3. Well, my mom woke up at 3 and went to the bathroom. I thought I would go to bed when she got out, since I had to use the bathroom to brush my teeth. Well, when my mom got out, I told her that I was “about to go to bed.” I didn’t get to bed until 4:30 or 5:00, and fell asleep at 6. I chose to take an antihistamine instead of an antipsychotic so that I would get in just the right amount of sleep and not sleep late. I woke up at 9 to my mom trying to get me to go to school, which I couldn’t go to because it’s Sunday. I decided to sleep until 10. Well, Molly got on me and laid across my legs at my pelvis. I tried to get up at 10 and couldn’t bend my back. I tried to push to the sides and I couldn’t do it that way either. I was hurting so bad. I felt like my back was breaking and that if I moved even an inch, or maybe even a millimeter, I would tear my spine in two. So began pain that has very gradually eased from a 300 on the 1 to 10 (ten being worst pain scale) to about a 9 today.
I’ve been having other pain as well. My big toe started hurting on Sunday as the weather turned dramatically colder. I also had some pain in both wrists, shoulders, knees, hips, hands, and ankles. (The only places I have osteoarthritis are my knees.) It was weird because this felt like arthritic pain, and my joints were hot and swollen, too. My big toe has continued to hurt, but now I feel the pain in all my toes, which is both a curse and a blessing. Since it has spread, there is more room to feel the pain, and therefore, in a sense, more pain. On the other hand, since it spread, it has also spread out some and has lessened the intensity. I try not to walk much now because when I put any weight on any of my joints, I get an intense amount of pain.
I’m trying to get my family doctor to send me to a rheumatologist to help with the pain and figure out how best to treat my Fibromyalgia and Arthritis. I also want someone to test me to see if my Osteoarthritis is the only thing I’ve got and if it’s spread, if it is. He won’t send me to the rheumatologist until after he’s seen me in an appointment himself. Well, that would have been in a few short hours, but since I had to reschedule so that I could get a letter that he may not write, it won’t be until next week. I don’t think he understands the pain I’m going through. My mom says that that may be because I haven’t really complained very much to him. Do you know why I haven’t though? Anytime I complain about pain and he can’t find it in a diagnostic test (which is pretty much the hallmark of Fibromyalgia), he’ll say, “Sometimes you just hurt.” Well, most of the time when I’m in pain, which, by the way, is about 99% of the time, I don’t want to hear someone tell me that hurting is just a natural part of life. I want someone to say that maybe there’s something that we haven’t tried that we could try. I know I can’t take pain killers for it since I’m allergic and I know I can’t have NSAIDs because I’m allergic. I don’t particularly like the idea of Lyrica because I’ve seen other women in my family use it and they’ve looked like zombies with it. I’ve asked to be put in pool therapy before to try and loosen my muscles, but he told me no because he didn’t think that I had significant cause to get therapy for the pain.
I’ve thought about switching to another doctor, but most family doctors will not start a new case with someone who has Medicare. There is one clinic that will, and they also take Medicaid, which would be a nice change, but it takes forever to get in there for a first appointment. If I called now, I might be seen by my birthday (approximately 34 days, it’s easy to keep up with with the countdown featured on all the local channels for the digital switch) and then I’d still have to wait to see one of their specialists, who does not specialize in rheumatology in general, but instead focuses on its impact in geriatric patients. That might be great for some, like my grandmother, but I need a doctor who knows how to treat an almost 25-year-old patient with a rheumatic condition. It would be nice to have someone who specializes in the area to help me out. Of course, my parents are afraid that if I get recommended to someone outside of that clinic that I’ll be recommended to the doctor who treated my paternal grandmother and thought that no one with arthritis should be in pain, so he gave her so much stuff for pain that it basically killed her. (It didn’t kill her outright, it just killed the different parts of her body by sending them into failure.)
I’m just in pain and frustrated.
On a side note, I’ve been to one ward YSA activity in the past 2 months and 0 stake ones. I’ve received exactly one question via Facebook about my well-being because I’ve been gone. Not from any of the leaders, who, I would have thought, were supposed to check on people when they mysteriously disappear. Instead it was from Jason, who is so nice. He wanted to make sure I was okay. I explained to him on his wall about my mom nearly dying and the migraines. I hope it didn’t sound like some pathetic excuse. I’m going to try to go to Institute tomorrow night for the first time since 2 weeks before Thanksgiving, but I don’t know if I’ll be able to go. I don’t even know if I’ll feel like going. My mom’s been itching to get me to go to YSA stuff again, but with certain things I’ve been through and seeing on a “friend’s” page a thing that said, “Not all children are fortunate enough to have souls. Ginger kids – help find a cure.” (I don’t know if she was trying to be cute or funny or if she just hates redheads. In any matter, I was offended, especially since I’m the only redhead and I always feel like there’s some tension between us.)
I better go to bed so that I will feel refreshed in the morning. Haha, like I’d ever feel refreshed in the morning.