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Posts Tagged ‘autoimmune’

I saw my rheumatologist last week. I still don’t have an official diagnosis, but thankfully I DO have medication. I mentioned before that I’ve been on prednisone for a while now. Prednisone, while it treats inflammation, does not do anything to deal with the immune system malfunction that is CAUSING the inflammation. It also has a host of really lousy side effects – the hot flashes, emotional instability (including great anger – I think we’ve all heard of “‘roid rage”, and prednisone can definitely cause it!), weight gain, fat deposits that alter the shape of the body (usually rounding the abdomen greatly and adding a ‘hump’ of fat on the upper back), ‘moon face’ (the face getting all puffy and round), bone degradation, and all sorts of other fun things. The longer you’re on it, and the more you take, the greater your side effects. The original dose I was on did not seem to help, so my rheumatologist had approved doubling it. The week before I saw my rheumatologist, things were getting worse and worse. The on-call doctors at his practice increased my prednisone twice in response to my phone calls, which meant I was taking three times what he had prescribed when he started me on it. Lucky me, that was enough to trigger the ‘moon face’ effect. If you saw only my face, you would think I had doubled my weight – I have an enormous double-chin, and my face just LOOKS fat. I don’t think I’m a vain woman, but it was quite upsetting to see all the same.

My rheumatologist said that the latest two increases meant I was taking far too much, and lowered me down to twice my original dose.

He also started me on Plaquenil. It’s one of the first-line medications for rheumatoid arthritis, though it’s used in other rheumatological disorders. I suspect that at this point, the working theory is that I have seronegative rheumatoid arthritis. It’s a good match for my symptoms – I’m affected most in the small joints of the hands and feet, and in my spine, and that combination is not uncommon in RA. All of my blood tests other than indicators of inflammation and a very generalized indicator of autoimmune activity have come back normal, so whatever I have, I have the seronegative version of. At that point, it’s a clinical diagnosis, purely based on what the doctor sees in terms of my symptoms and how he thinks it fits together. It is entirely possible that at some point in the future, something will change and the blood tests will show precisely what’s going on. That happens for some people; for others, the blood tests are never conclusive.

So I’ve been on the new medication for just over a week. While apparently it has nasty gastrointestinal symptoms for some people, I have so far been spared that, despite my usual sensitivity to such things. I don’t wish to jinx anything, but the swelling in my fingers is already down slightly. I’m now back to normal, but I’m definitely slimmer. And the moon face effect seems to already be coming back down slightly.

Unfortunately, the muscular problems in my back are not succumbing to my efforts to help them. I did figure out that I seem to be exacerbating my troubles by using my iPad when I’m laying down. The worst of my muscular problems are between my shoulderblades at this point, and those muscles are working when I hold my hand up to type or navigate on the tablet. My physical therapist had some ideas about better positions to set myself up in, but then the tablet is far enough away that I can’t see what I’m doing! I think I may just have to accept that I can’t spend much time online until my back is doing better.

That’s really all that’s going on around here. I have projects that are just waiting for me to have my hands and back behaving at the same time – a hair clip I am repairing the finish on, a sweater that needs to be sewn together, and I’ve joined in a hair craft exchange for the holidays. So far, the only thing I’ve been able to do is knit, because neither my hands nor my back needs to be at its best for that – it doesn’t put as much pressure on my thumbs as sewing, and it doesn’t require sitting somewhere other than my couch the way other things I’d like to work on do.

I’m enjoying one of my classes, and the other two I’m just trying to keep my head above water. I’ve missed SO much class, the professors in those two classes would be well within their rights to refuse to let me take the exam, but it seems like both of them are willing to let me slide. Thank heavens. I don’t find the classes particularly useful for one of them – the cases are pretty self-explanatory – and while I do like the other class just fine, I think I just don’t get as much out of class as most people do anymore. I’ve been at this so long that I’ve gotten pretty decent at teasing out what’s important in decisions, I think. It’s funny, it’s much harder (to me, at least) to tease out what’s important given a set of facts than it is to tease out what’s important from a case. A case is all about principles, where a fact pattern is more like…matching recognition. You have to be able to pick out which pieces are like cases, and then apply the principles from the right cases. I hope that makes sense, I’m not certain I’m explaining in a way that makes sense to someone who doesn’t work in this field. It’s one of the reasons that there is talk about how useful law school really is. That, and unless you do a clinical of some kind, you learn very little about what the process actually looks like. Okay, someone comes into their office and gives you a bunch of facts…so what do you do then? What should this form or this request to the court or this motion or this filing look like? What order do you do things in? Who do you need to send things to, and how? And people are taught perilously little about how to bargain, which is often at the heart of legal work. Very few cases of any kind actually go to trial; most settle. And if you don’t know the very basics of how to bargain, how on earth are you going to get your client what they should get? I see this in exercises, where instead of giving an opening offer, someone will give a range of what they might accept. No, no, no, you start at the best end of your range and know in your head that you’re willing to accept less, and then see what their opening number is, and then both sides work towards a compromise, if possible. If you give them a range straight off, they’re going to START at your low end of acceptable and try to work you down from there. I never realized how much shopping at places where one haggles could be helpful professionally until I saw how very badly some people do at this sort of thing.

Anyhow, enough about school.

The fiance and I need to do something to insulate this place – the heat keeps cycling on, and admittedly it’s quite cold out tonight, but this is expensive. Unfortunately, we have electric forced air heat, which is terribly pricey. I don’t even want to think about what our heating costs are going to look like this winter. At least with my horrid prednisone hot flashes, we’re keeping the apartment relatively cool (64 degrees, where I normally am uncomfortable under 68 or 70), which I suppose is probably helping matters. I am realizing that the big bay window that I love in our living room is going to be a horrible heatsink all winter, because we can’t really put window film up to help keep it warmer. I guess we’ll just have to do all the other windows in the apartment, and get draft-blockers for the doors we rarely use (we have 3 outside doors – one to the ramp, one out of our kitchen, and one into the building), and just hope that helps keep us warmer in here. I definitely expected a place that was extensively rehabbed less than a decade ago to be better insulated! The worst part is that the room I need to be the coolest is the room that is consistently the warmest. I have the worst time with the heat flashes at night, so I like the bedroom cooler, but the heating system does not agree with me. So it’s sweaters and blankets in the living room for us. Ah well, at least we aren’t worrying about keeping guests comfortable, just us and the pooches.

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Two weeks ago today, I picked up my back brace.

We’ve been thinking about getting me a back brace for some time now. Ever since I dislocated two ribs in March, really. After that happened, I had bought a soft posture corrector online. It seemed to help reduce my rib pain, and had the added bonus of keeping my posture a bit better. I’ve had back problems since I was 15, and shoulder problems since I was 17, and this seemed to be helping a little bit with both.

So my doctor decided that if the soft, kind of generic shaped posture corrector was helping, perhaps we should go in for something a little more structured. He sent me off to an orthotist, and the orthotist picked out a brace for me. It’s pretty new to the market, and part of what we all liked about it is that it’s a slim, light weight design. The California Eco brace seemed like a good answer for what I need – it provides support to both the lumbar and thoracic (that is, lower and mid-back, which covers most of my problem answers), and it helps pull the shoulders back and keep the spine aligned from the sacrum (the pelvis/hip bones) to the base of the neck. If you’re curious about it, you can see a good description and picture of it here – http://www.orthomerica.com/product/1606696-california-eco.

Now, I was supposed to pick this thing up MONTHS ago, no exaggeration. But we moved, and while I was still in physical therapy for the ribs and the back issues that came with them, I started my summer class. The summer class ended, and then my auto-immune thing flared wildly. I had bigger fish to fry than picking up a brace. Then fall classes were starting, and the auto-immune thing was still giving me problems, and my insomnia decided it needed to be a bigger part of my life. And frankly, if we’re being honest here, I procrastinated a bit about picking it up. I didn’t want to wear it. I didn’t want to be deciding whether I would deal with it making me all lumpy under my clothing or whether I’d wear it on the outside where it’d be visible. Anyhow, the stars and planets finally cooperated, and I was able to pick it up two weeks ago.

They told me to use the usual wearing-in schedule. For those of you not familiar with braces intended for long-term wear, this is how it works. You have to gently accustom your body to the new piece of equipment. So typically, you wear it for one hour on the first day you have it, and slowly increase the amount of time you wear it until you’re able to wear it for as long as you’re supposed to. I suppose ideally, I’d be working up to wearing it whenever I’m not in bed. Anyhow, the point here is that you start with one hour of wear typically. Being a somewhat cautious soul, I started by wearing it for 40 minutes.

It felt weird to have my posture altered like that, but not bad. It did feel good to take the brace off at the end of that 40 minutes, but anyone who wears braces will tell you that it pretty much always feels good to get the brace off at the end of the day, even when you’re completely adjusted and accustomed to it.

It was perhaps 6 hours later that problems started. I was watching TV and relaxing, and suddenly there is a horizontal bar of pain about an inch wide slicing across a space slightly broader than my spine. There were only a few minutes left to the show, so I figure I’ll just watch to the end and then go and lie down. The pain starts spreading, first the bar extending horizontally, and then increasing vertically. It traced down my spine and up my spine. My head began hurting terribly. And then it started affecting other things – my abdomen hurt so badly that I started retching. I went and lie down in bed, and the pain was bad enough that I was making noise and woke my fiance. I ended up throwing up, and it took me a while to figure out that I wasn’t having a tension-induced migraine (which was how I initially interpreted the combination of headache and nausea/vomiting). I got out my tennis ball and started working on the muscles right around where the pain started. It took me a good long while, but I finally got the worst of the pain to abate.

I spent the next week using heat, the tennis ball ‘massage’, and stretching to try to get the whole thing under control. I was doing not too badly by the weekend, but come Monday it got worse. So Tuesday, I got in to see the same day clinic at my doctor’s office. He’s impossible to get a same day appointment with, but the doctor I saw was quite pleasant. She gave me 2 weeks’ worth of muscle relaxants, and perhaps more importantly, a prescription for physical therapy.

I bumbled through a week of feeling truly dreadful, and then today was finally able to see my physical therapist. He does think that the brace is a reasonable choice, but we need to do some work on my back before my back is ready for it. And I need a much slower wear-in schedule, starting with no more than half the time I originally attempted. Shoot, I think I’ll probably just do 10 minutes to start! Anyhow, he did a lot of mobilization on my spine today, because that was a big part of the continuing problem – the muscles that support the vertebrae had locked up so badly that nothing could move. It was definitely not the most pleasant physical therapy session I’ve ever had, and my back is very tender now, but I am hopeful that this will help. The physical therapist also believes that in the long run, the brace will likely be good for me. It’s just getting to the point where I can tolerate it that’s the trouble.

In other news – I got my results for my blood work. It’s not going to be helpful in diagnosing me. All of the tests to pinpoint more specifically what kind of auto-immune condition we’re dealing with came back in normal ranges. Whatever I have, I apparently have the sero-negative version. While that’s not unheard of, it is a bit unusual. I suppose given how often I have the unusual version of conditions, I shouldn’t be surprised! I see the rheumatologist a week from tomorrow to see what he has to say on the matter. I hope that he’s able to put me on something that isn’t the prednisone I’ve now been on for almost two months. It has my insomnia acting up, and I have terrible heat flashes (to the point where I’ve been keeping the house about 4 degrees cooler than I usually tolerate, which is 6 degrees cooler than I normally like), and a couple weeks ago, I chewed out the fiance so badly over something utterly inconsequential that he was afraid to come home from work. Oh, and I’m sweating buckets, and I’d like to eat the whole world. Quite the unpleasant little drug. Necessary, but unpleasant. I’m worried that my doctor will want to keep me on it. If that’s the case, they’re probably going to need to increase my dose again, because the hand, foot, knee, and back pain is all coming back, and my hands are visibly swollen again. this is all getting old, body! I’m fed up with being swollen up. I just want you to go back to playing nice and not beating yourself up.

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