Moving along…

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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Well, that didn’t go so well

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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Official

As of Friday, I’ve officially been diagnosed with Lyme Disease.  It’s a clinical diagnosis, partially based on my reaction to antibiotics in December (I was exhausted but the pain and swelling totally disappeared).  I’m supposed to get blood drawn (tomorrow, hopefully) to check for Lyme antibodies, but at this point I have enough symptoms that my GP was willing to call it.  See, the tests for Lyme are pretty unreliable – the false-negative rate varies from 30-50%, which is pretty absurd.

I’ve been on antibiotics since Friday afternoon, so I’ve now got 2 days worth of pills in me.  I’m tired, but my sleep schedule has been pretty messed up lately.  Have any of you ever seen a mouse or a hamster (or a rat, I suppose) slip while running on its wheel?  If they’re going the right speed, they kind of get thrown around in there like clothes spinning and bouncing around in a dryer.  That’s what my sleep schedule has been like lately – I’ll get it going reasonable for a day or two, and then it’ll get majorly screwed up again, and I’ll be thrown around for several days by that.  It doesn’t seem to matter whether I take the measured approach to fixing things (adjust by just a little bit at a time) or the radical approach to fixing things (either stay up a huge amount of time or knock myself out with sleeping pills, either way designed to get me asleep at the appropriate time).

This video gives you an idea of what I’m talking about: http://www.youtube.com/watch?NR=1&feature=endscreen&v=buUKHggrhd4 (I wanted to embed it, but it looks like WordPress wants to charge $60/year to let me embed videos.  wtf, man?  I just want to embed ONE now, it’s not something I do a lot…grr)

That?  That’s what I feel like with my sleep schedule right now.  And I keep having to jump back on the wheel because, well, you can’t go without sleep.  Not to mention, a girl’s got to get to her doctor’s appointments and her classes.

I’m also dealing with what seem to be fairly typical Lyme symptoms.

Rage.  Oh my god the rage.  There are things going on that it’s perfectly normal to get annoyed about.  I’m not annoyed about them.  I want to verbally eviscerate my fiance because the house is messy.  The fact that he’s stressed out to the point of being somewhat emotionally fragile at the moment (which means that I feel like I should be more careful about snarling at him than usual) is producing a very counter-productive reaction: I’m even angrier and want to yell at him even more.  It’s at its worst late at night, which would of course be an especially bad time to yell at him because he’s an early riser and tends to be impressively incoherent when woken up in the middle of the night.

The screwed up sleeping schedule I mentioned is another typical Lyme symptom.

The forgetfulness is…I don’t have words for it.  I sometimes lose track of conversations mid-sentence.  I’ll be saying something and then all the sudden I have NO IDEA what I was saying.  It’s exasperating and it makes me look stupid.  It also frustrates the ever-loving crap out of me.  I also can’t remember anything I’m supposed to do, nor can I remember to ask my fiance to do things when he’s awake, which means that I crawl into bed at ungodly hours of the night and wake him up to ask him to do something, which he has trouble remembering (because the poor guy was asleep), which only adds to my rage issues.  Completely unfair, and I KNOW it’s completely unfair.  Which only makes me angrier.  *facepalm*

I suppose I should add a psychiatrist visit to my to-do list, to deal with the anger, and I know I need to see my sleep specialist, only I never remember when his office is open and I’m free to call.

All in all, the collateral damage from this damn infection is impressive and frustrating and ye gods do I need this thing to go away.  I mean, I’m not normally a tranquil person, and I tend to have bad sleep patterns and a bit of being scatterbrained, but this?  This is just absurd and unlivable.

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That was interesting…

A couple weeks ago, I got an ear-and-sinus infection.  It was a pain, I felt like crap, etc.  I went to my GP, and because he’s used to how infections do a number on me, he was willing to give me a relatively long, strong course of amoxicillin to fight the infection.  A funny thing happened, though.

About 3 days into the antibiotics, I started being more exhausted, but strangely there was less pain in my joints and muscles.  As I continued through the antibiotics, this continued – my joints and muscles felt better and better.

I got curious and googled to see if the antibiotic was one used to treat Lyme disease.  You see, my friend Sharon from the blog AfterGadget, who has chronic Lyme, pointed out a while ago that my symptoms sounded like Lyme.  Amoxicillin is the second-line drug used for treating acute Lyme disease.  The fact that I felt so much better pain-wise is, I think, the clincher on a clinical diagnosis of Lyme disease.  I haven’t had a lab test run yet, but to my mind that’s somewhat irrelevant.  You see, the lab tests for Lyme are impressively inaccurate and prone to false negatives – the studies say that the Western Blot test, which is the most commonly run test, gives false negatives to 30-50% of people who actually have Lyme.  There are better tests, but they’re only done by two labs.  I’ll be asking my doctor to write for one of those, but I already have the paperwork for a Western Blot (and my insurance covers testing 100%), so I’ll be getting it done anyhow.  The fact that it misses a lot of cases doesn’t mean it misses all cases, so it’s worth doing as it is less hassle than getting one of the other tests run.

I’m actually really happy about finding out I almost definitely have Lyme.  While it may take a couple of months to totally clear this out of my system, this is something that can go away.  To me, at least, this is enormously good news.  Way better than adding another hard to pinpoint, hard to manage condition like a variety of arthritis to my long list of diagnoses.

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Test One-two-three (anything but that!)

(Why yes, that title is a Rent reference.  I ❤ the show and the movie)

I have medical testing coming up that I am not looking forward to – some because I think it will be unpleasant, some because there are no good answers.

The one I expect to be painful is an ultrasound of my hands.  I remember how firmly they press on say your abdomen for ultrasound imaging; that kind of pressure on my hands would be AGONY.  I suppose there aren’t really good answers on this test, now that  I think about it.  Either they will find inflammation that backs up the theory that I have something like rheumatoid arthritis (RA), or they’ll decide there isn’t inflammation there and we don’t know why my hands hurt nor why they look swollen.

I’m supposed to have an MRI of my brain done, because my former headache specialist worried that I might have pockets of fluid building up in my brain, due to the kind fo headaches I get on a near-daily basis now.  Again, there aren’t really any good answers – if nothing shows, then we have to keep investigating to see what is causing the headaches.  If it does show, that means brain surgery.  And oh yeah, having a MRI is no walk in the park.  This one will be with and without contrast, so they will fix my head in a specialized vice that partially blocks my vision, put me head-first into a long narrow tube I barely fit in, and then there’s all the noise and the vibration (which hurts a lot!).  As if that wasn’t bad enough, they’ll pull me about 2/3 of the way out so they can put in an IV and inject in the contrast material, then put me back in the tube.  I’m mildly claustrophobic, and both the head vice thing and taking me out and putting me back in considerably aggrivate the way I feel about it.

Then there’s a rotational CT scan of my neck and where the head meets the neck.  I have symptoms that could match up to craniocervical instability (CCI), which is vastly more likely in people who have connective tissue disorders like mine.  If I don’t have CCI, then we have a question about what is causing a lot of symptoms that include pinched nerve symptoms in both my arms.  If I do have it…whoa.  Surgery, but that surgery might take care of a slew of issues that have affected me over the last 4 years.  However, I won’t be able to get the botox injections into my neck that they think would stop my migraines because my head would already be unstable enough on my neck that they would be worried about destabilizing it more.  The test itself isn’t too onerous, at least – I turn my head all the way to one side and go through a mechanical doughnut rather quickly, then turn my head to the other side and go through it again.

I also need an MRI of my mid-back to see if the maybe-RA is attacking my spine or if the pain is coming from something else.  This is another relatively painless test, but the results are something I’m not sure I want to know.  If it is the maybe-RA, I suppose they’ll treat more aggressively.  If it isn’t…well.  We have to figure out what’s causing new back pain, how and why, because this back pain is neither normal nor tolerable for me.

I don’t really know what I want at this point.  I am tired of feeling like crap, so I would like to feel less like crap, but I don’t know what test results or medications will offer that solution.  In the meanwhile, I guess I keep on keepin’ on.  It starts to feel a bit surreal sometimes, and other times it feels like I keep going out of habit or lack of palatable alternatives.

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I’m sorry, we’re all out of good answers

Or at least, that’s what this week has felt like.

I had three appointments this week: one with my GI for new symptoms, one with a rheumatologist for a collection of new symptoms I mentioned in a previous post, and one with the headache center because my headaches are getting worse and I’m willing to try a preventative again.  All three appointments concluded in ways that I have to admit I’m far from thrilled with.

My new GI symptoms were lower GI bleeding and increased GI pain.  Now, I’ve been diagnosed with IBS, so I’m used to a certain level of GI pain, but it’s usually because of spasms and I have medication to treat that.  This pain doesn’t respond to those pills, and GI bleeding is always a concerning symptom.  There are two basic possibilities when you’re dealing with lower GI bleeding: hemmorrhoids and inflammatory disorders.  While hemmorhoids are a vile thing to consider, they would definitely be the lesser evil here.  One or two treatments could get rid of them, and while there’s a chance of recurrence, it’s not a huge lifetime thing.  Inflammatory disorders are a whole other boat.  Both Inflammatory Bowel Disorder and Crohn’s Syndrome are auto-immune issues, which means that your own immune system is attacking your GI.  We’re talking medication probably for life and the possibility of major surgeries to remove parts of the GI system that get too badly damaged.  Not pretty.  Both are currently on the table, and will remain that way until I get a sigmoidoscopy done next month.  I’m sure you can imagine, with GI pain, how much I want to have a camera shoved up my derriere.  Especially since the last time, I ended up in the ER a few days later with one of the few episodes 10 out of 10 pain I’ve ever had.  Ugh.

The rheumatologist appointment wasn’t a whole lot better.  I’ve seen this rheumatologist before; in the summer of 2008, he was the first doctor who suggested I had Ehlers-Danlos Syndrome.  He struck me as a kind man and a good diagnostician, so when I needed to see a rheumatologist, I asked for him by name.  We talked about symptoms, and he could see the swelling in my wrists even if he couldn’t see it in my fingers (because I have exceptionally slender fingers, they look about normal when swollen).  I didn’t like his answers, either.  He said that there were a couple of possibilities that sprang to mind.  Because of the GI symptoms under investigation, he said that I could have Inflammatory Bowel Disorder or Crohn’s, which can cause generalized arthritis-like inflammation.  I could also have a sero-negative rheumatological disorder like rheumatoid arthritis or Sjogren’s; the main confirmation for either of those would be a negative diagnosis for bowel issues and a positive reaction to medications that treat them.  In any case, he suspects something I’ll be dealing with for the rest of my life.  Joy.

And finally, on to the headache specialist.  I stopped seeing them a year ago because I tried two different preventative medications and reacted badly to both – sleeping 16-18 hours a day, having trouble doing simple things like feeding myself because I’d get sidetracked somewhere in the process (usually after putting food into the microwave).  Thing is, the headaches have gotten worse again.  I’m now having positional headaches, which scares the crap out of me because I know that can be a sign of Chiari, which is way more common in EDSers than in the general population.  It can also be a sign that the cervical settling I was diagnosed with a bit over 2 years ago is causing problems.  Well, the headache specialist threw in a new possibility – he said I could have pockets of cerebro-spinal fluid developing in my brain, which apparently is also more common with EDSers than the general population.  Aw fuck.  If that’s the case, they have to go in and patch them because they can cause brain damage if left unchecked.  Gah.  Because of this possibility, I have to have a MRI done, with and without contrast.  That’s pretty much torture to me.  I’m mildly claustrophobic, and having my head bound in place and then being slid into a tube that barely has enough room to fit me is pretty horrific.  Worse yet, to do a with-and-without contrast, they have to do one set of scans, bring you back out so they can inject you with contrast, and then put you back in.  It is one thing to deal with being put in once; something about being pulled out and put back in heightens the sensation of being trapped enormously for me.  And of course, for an MRI, you have to stay perfectly still.

They also are having a little trouble with preventatives because of my other conditions.  Migraine preventatives tend to be drugs that were originally intended for other uses that were discovered to have headache-preventing qualities.  They fall into 3 major groups: anti-depressants, anti-seizure meds, and blood pressure meds.  They don’t want to give me an anti-depressant because I’m bipolar.  I’ve reacted badly to 3 anti-seizure meds, so we don’t want to try that route again – no sense beating a dead horse.  Which leaves blood pressure meds…which have the potential of making my POTS worse.  I guess that’s less scary than messing with things that can affect bipolarism because I have a better chance of catching POTS symptoms before something bad happens, not to mention that the gap between theraputic for headaches and theraputic for the original use is wider for blood pressure meds.  That is to say, the level of anti-depressants needed to prevent migraines is closer to the level needed to treat depression than the level of blood pressure meds to prevent migraines is to the level needed to treat high blood pressure.  The really bad news is that they think the main medication I’m on to manage my generalized body pain may be making my headaches worse.  They want me to think about coming off of it.  The idea of coming off of the medication that makes the pain that encompasses my whole body tolerable is enough to make me want to scream.  I have to sit here and try to figure out which is worse: the possibility that my headaches will continue to get worse, or what it will feel like to come off the medication.  Pain is a funny thing; being on opioids is known to make pain worse in some people, so it might not be as bad as I think.  Except I remember what it was like before I got on the opioid medication.  I spent all of my time either at school, doing homework, or asleep, because being awake was too damn painful.  I don’t want to go back to that – it’s a frightening possibility.

Which is to say, this week was full of catostrophic SUCK.  I got answers I didn’t want at every turn.  It sucks up your energy, dealing with stuff like this, as if I didn’t have all kinds of other things eating up my energy.  I’m exhausted and sad and frustrated and angry, and feeling very vulnerable right now.  I feel like I am walking on thin ice, and anything could send me plummeting into the deadly cold water beneath.

In some different news, I am not the only person who has been dealing with sucky stuff lately.  A friend of a friend has had a crisis happen where she cannot get the treatment she needs to be as healthy and well as she can be.  My friend, Sharon of aftergadget.wordpress.com, organized an auction to help out.  There are a variety of things included in the auction, from artwork to services.  Please check the auction out at http://heathersauction.blogspot.com/!

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Sound the alarm, we’re under attack!

…or at least, it feels that way.

I sort of earned this one. The other day, as I was driving around town, I spotted a bunch of chairs set out for people to take. Well, wouldn’t you know it, the only major piece of furniture the boyfriend and I were missing for the new house was chairs for the diningroom!

So I pulled over. There were several people grabbing up chairs. I sat on the different styles there to see which was the least uncomfortable for me, and then madly dashed about finding 6 of the same style and finish. I ended up carrying them to the car two at a time in order to make sure no one carried them off (which almost happened, twice).

These are not by any means light-weight chairs. They are solid hardwood and heavily built. As far as owning them goes, this is great – probably oak, nice looking, built to last, wonderful. But as far as yours truely carrying them…ugh, that’s a whole other matter.

This was…a most unwise thing to do. You see, my back has been contemplating moving from a state of cold war level tension into open revolt. I’ve got a 10 year history of back injuries, starting with a car accident that didn’t bother anyone else but sent me to three months of physical therapy.

I’ll admit, the whole story on how this was foolish gets worse.

You see, on my way out to the errand that sent me to that part of town, I had checked my mail. And in the mail? My results from an MRI of my lower back…which showed two mildly herniated discs in my lumbar spine.

I read it, but it didn’t really sink in until yesterday evening. Which is about when I really started to feel the impact of my oh-so-clever furniture moving.

I know the herniated discs don’t explain everything that’s wrong, but there’s some level of relief at having an answer as to why my back has been so incredibly bad for the past 6 months. I don’t know, at this point, what we’re going to do about it. I also suspect I have herniated discs in other places – the pain where I now know I have a herniated disc in my lower back is very similar to the pain in the middle of my spine, and at the base of my neck is suspicious as well.

For that matter, I need to have vertical MRIs done to show the curvature and possible subluxations (partial dislocations) in my back.

In people with EDS, it’s not uncommon for joints to slip back into the ‘correct’ alignment if you set it up so that it’s easy for them to. This means that a traditional, horizontal MRI aligns the spine more often than not, and can do the same for shoulders, the sacroiliac joint, and others. So the fact that my horizontal MRIs show my back in good alignment doesn’t necessarily mean much.

Unfortunately, like so many other things in my world, that’s asking for slightly non-traditional treatment. I guess I’ll start that fight once we figure out what we’re doing with the information we already have.

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Not the next entry I intended

Well, I’d meant to make my next entry the second half of my Access and Accomodation musings.

Instead, I’ve gotten another piece of very rough news, so bear with me here a little.

I recieved the report from the geneticist who diagnosed me yesterday. It had some…unexpected things in it, none of which were good.

There were the little things that weren’t good – need to get my hearing checked because I wasn’t hearing things evenly on both sides, signs of gingivitis in my mouth, that sort of thing.

And then there was the big one.

While I’ve been diagnosed with EDS, I’ve been diagnosed with what is considered one of the relatively more ‘benign’ varieties. You see, while classical and hypermobility types of EDS will destroy your joints pretty thoroughly, and cause a variety of (relatively) minor problems with your organs, not to mention the…interesting…scars and stretch marks all over, they don’t have the high potential for fatality that vascular type has.

But now I need to be tested for vascular type. Or rather, my grandfather needs to be, because if I have vascular type, it comes through him, and all of my aunts and uncles need to be tested. If he won’t do it, apparently, I really need to.

I’m upset. I mean, I mentioned my suspicions of possible vascular type in the appointment, but really felt like the answer was that it wasn’t likely. I now know that I have markers that match up with vascular type – I have grey scelera (that’d be the whites of the eyes) and my most profoundly hypermobile joints are the small joints of the hands/fingers. Both of those match up with vascular type. I hadn’t thought this seemed likely, and yet…well, here we are, facing expensive genetic sequencing. The vascular type is the only one for which there is a conclusive genetic test.

The life expectancy of someone with vascular type is on average 50 years.

I’m sure you can imagine, my boyfriend and I are devastated. I haven’t told my parents what the implications are yet, because frankly until we know I have it, I’m not willing to do that to them.

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A purpose, and an introduction

Welcome.

I am Kali.  I answer to a lot of other names, but that one will do for now.  For the record, it’s actually a nickname drawn from my real, given, birth-name – I didn’t just make it up because it would be cool to be named after the Hindu goddess of death and destruction (granted, it is cool, I just didn’t make it up!  I do find it kind of amusing to be connected to a goddess whose name means ‘dark colored, black’ when I am one of the whitest people I’ve ever met)

It is hard sometimes to explain why we do things, but that is what I’m attempting today.  I am starting this new journal because now, I have answers.

To what, you ask?  To the mystery symptoms.

I have Ehlers-Danlos Syndrome, classical type (c-EDS).  It’s a genetic condition; I suppose you could say I have had it since conception.   All my life, I have been told that I must be clumsy because of how often and how badly I have managed to injure myself.  It would be more accurate to say that things that would do no harm to a ‘normal’ person can be devastating to me.  Because of the collagen flaw that EDS causes, my connective tissues are very fragile.

Allow me to illustrate what this means. Your ligaments are all connective tissue; they hold your joints together.  Imagine that your average person’s ligaments are like rope – they’re pretty hard to tear, and they’re good for securing things into place.  Mine would be more like rubber bands – easily stretched out of where they ought to be, pretty lousy at holding the bones together securely, and oh yeah…they snap a lot easier.

So, all of my life, I have easily and frequently sprained, dislocated, subluxated (that’s a partial dislocation), and hyper-extended all of my joints.  I was born with unusually tight joints, so my joints are in relatively good condition for a person of my age with EDS.

Sadly, that does not in the end mean much.  I am still, at 25, disabled.  I walk with crutches or a cane, because my hip and back trouble me if I do not.  I am in chronic, severe, unending pain.  Between the pain and the medications to manage it, I am nearly always fatigued.

My diagnosis is recent.  On January 30, 2009, I finally received a definitive diagnosis.  I had suspected EDS for several months at that point; I had been told I probably had it by a rheumatologist, and told that I definitely didn’t by a geneticist (but I kind of ignored that since he didn’t pay any attention to anything I said).

This is year 1 for me.  Not of being sick/disabled – I have had joint problems since I was in my teens, and abruptly became very ill in August 2007 (from which I have never recovered – we suspect that I developed fibromyalgia at that point).  But year 1 of knowing why.

There is a lot to talk about.  The reality of having a diagnosis that means that it’s all downhill from here.  My wait for a service dog.  Trying to keep life meaningful when so much is taken away from you.  Disabilities rights and accessibility issues.  Law school, where I am in my second year and trying desperately to finish my degree.  The future.  Love.

So welcome.  It’s a bumpy ride, but there’s room for you to join me.

But first, a few ground rules.

1) Don’t say that there’s a reason for this.  No.  There is no reason for a person to have this kind of suffering.  This is not a point I’m willing to argue.  Just don’t.

2) If you do know who I ‘really’ am, kindly stick to calling me Kali or Brilly or BMBB – something drawn from the name of this journal.  I do not want my ‘real’ life to find this journal, so I am trying to keep it very separate.  Respect that.

3) Play nicely in the comments.  Don’t start flamewars.  If I ask people to stop dogpiling someone, no matter how much you think they deserve another comment, restrain yourself.  You are welcome, nay encouraged!, to disagree with each other, but do it politely.  I will remove comments I think are inappropriate, and if I need to, I’m sure I can figure out how to ban people.  In general, you’ll get two warnings, but if it’s something particularly egregious, you might not.

4) Like Aretha says, R-E-S-P-E-C-T.  I’m not asking for much – no name calling, no insults, no personal attacks.  Got it?

Right, now if I could just figure out how to get this car in gear…

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