I haven't been able to internet very well recently-my wrists and fingers are killing me, so I've been reduced to the stupid touchscreen tablet computer thing. I hate it, and the only way to type on it is with a couple fingers poking at the virtual keyboard. Not a useful method for typing out a blog post.
The past few days I've been trying to get accustomed to that Savella. I put in a call to my doc and hopefully he'll take me off it. I'm in more pain than I was before I started it, I've had a headache (varying between "barely noticeable as a twinge" and "go sit in the bathroom with a locked door and the lights off because light and noise make me want to cut off my own head to make the hurting stop") and pretty bad nausea, plus chest pain, heart flutters (I swear it has a name for that but I cannot remember it AT ALL! Ugh..........OH!! Duh, palpitations! Heart palpitations!), and a couple panic attacks which are not fun. I was shaking on the bathroom floor crying from sheer terror. At this point I'm thinking of just staying off long-term pain meds in general. I'm only 19 and my daily routine is not that strenuous. My pain tolerance ends up being really high, too. On the zero to ten pain scale, my zero is about a four or five on a normal person's scale, but because I've lived with it so long, it's become my baseline. I'm used to that low level of pain that's always there, and I know how it spikes, etc. Basically it tells me how long I can push my boundaries. If I'm walking around, maybe my right knee is twinging a bit more today or my left shoulder is feeling particularly sore, then I know to be a little careful with those areas. If I have no pain, then those cues are gone.
Went to the big city for an Echocardiogram, which is an ultrasound of the heart. Ever seen a pregnant woman get an ultrasound? It's a lot like that, but up a little ways. The goopy jelly stuff goes around the chest instead, and there's little stick-on electrodes so the machine can hear the heart beating. I found it funny, because I had one done before, in early November, and the nurse just had me strip to the waist and let me cover with a towel, then moved the towel aside so she could move the ultrasound wand around. This one, they just had me lift my shirt and unhook my bra, and made sure I was covered with a paper smock the entire time...are liability concerns really that bad? It's not like I'm gonna sue them. I'm comfy with my body, in that no, I'm not gonna walk around nude in front of my family, but I'm not uncomfortable being topless around a doctor that I'm probably never gonna see again. It's not like I'm gonna see her at walmart and think "Oh, crud, that lady's seen my boobs". And it's not like she's gonna remember. That's her job. She sees plenty of boobs, and mine aren't that spectacular. I just don't get the logic, but this is really off-topic.
Walked around a Sam's Club for a while and ended up pushing the cart by time we got halfway around, just so I could lean on it. My knees were trying to hyperextend again, both of them now, and I didn't feel like going out to the car, getting my pain-medication ointment, and waiting an hour for it to kick in before I went back in. Besides, even if I didn't feel the pain, it still does bad stuff to the ligaments and such. I keep finding reasons to shy away from pain meds...my family usually has to shove them at me before I'll take them. I don't think I have a limit of pain that I can't stand, where I'm either fainting or sobbing from sheer pain, and I don't like just medicating everything into behaving. I expect that attitude will change, because I've got a long, long life of this to look forward to, but right now it's still something I'm really uncomfortable with.
A quick glimpse of the days I wasn't here-
Feb 24th
My mom had a long day at work and I had to stay home to watch my brother (he's 17, by the way...) and try to fix supper.
As you can imagine, supper didn't happen. When mom called after work I asked her to get us both something to eat before she came home, because I just couldn't manage it. Cooking involves carrying, standing, stirring, pouring...lots of stuff using wrists, fingers, shoulder, hips, knees...pretty much all the joints, and they were simultaneously rebelling.
Feb 25th
The 24th wiped me out...I slept until about 6:30 at night, and it was lovely to just lie down and not move. My mom was working again and my dad, bless him, took my brother out to get some groceries and snacks, and just to drive around (we're still relatively new to this area and it's beautiful here), so I got to rest.
Feb 26th
My mom was off this day and my dad and brother went fishing. Mom and I were both asleep all day-I've been going between our couch and my brother's futon for sleeping, because the support of the arm and back is really helpful so I can sort of brace myself there. A lot of people with Ehlers-Danlos Syndrome sleep with dozens of pillows, wedged in around them so tightly that they can't move, because if they move they know something will dislocate in their sleep. Mom is where my EDS came from, it seems like. She can do a few of the bendy tricks, and we've traced symptoms back to her mother and grandmother. Unfortunately, she actually does work, and it's really painful for her.
Feb 27th
I found out a library nearby is going to be hiring for a part-time assistant in their teen area! My goal, in terms of a dream job/career, is to work in a library. In light of my mobility issues, I've spent a while reviewing the usual duties of a librarian and assessing whether I could do that. For example, pushing a bookcart around would mean I had something to lean on. There are very rarely times in a library when one absolutely has to lift a very heavy item around-most books and library things are relatively light, so as long as I'm not standing dangling a single item from one arm for a half hour, then I should be fine in terms of arm problems. If I have a wave of dizziness, then I can take a moment and crouch down-that's what usually helps with my dizzy spells, since the reason they happen is that my heart isn't beating hard enough to force blood to my head. If I crouch, then it has less gravity to struggle against. I do know that if it's the sort of library where the checkout people are all standing at all times, then I can't do that. Otherwise, I can do most of the things that would be required. It's funny how things I decided as a child have a new light now...I knew I wanted to be a librarian, and I was never going to have children. Now I find out that working in a library is something I could actually manage, and that having children could be dangerous for me and the child. Coincidence is strange sometimes.
Today is February 29th, leap day, and coincidentally, Rare Diseases Day. Ehlers-Danlos Syndrome affects one in 5-10,000 people. This is a video made by a member of a group for teens with Ehlers-Danlos, and does a pretty good job both of explaining what EDS is, and that those with it are normal and just want to be accepted. Every picture on there is a person with Ehlers-Danlos.
http://www.youtube.com/watch?feature=player_embedded&v=zOJBzt4lu34
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