What do you do about the doctor?

One of the hard parts about having a chronic illness is that some doctors are just going to fail you.  And some of them are going to fail you badly, in ways that are really harmful.

I can’t remember if I’ve already mentioned this before, but the first geneticist who I saw was an absolute prick, and beyond useless.  He told me I had “familial joint instability” and not Ehlers-Danlos Syndrome.  I saw him because he was local, in-network for my insurance, and his office claimed he was experienced with EDS.  He talked over me when I tried to ask him questions, like why he wasn’t considering my symptoms other than joint instability in making his diagnosis.  He made me feel disregarded, and above all like the most important thing for him was scrambling off to his meeting he was late to.  Hey, he’s the one who scheduled patients for that date and time.  It’s just not right to do that when you don’t have the time to actually deal with them and talk to them about the ramifications of the diagnosis (or non-diagnosis) you’re giving them.

My GP at the time didn’t believe I had EDS.  I only got the referrals to geneticists because I insisted on them and the rheumatologist said it might be possible that I had EDS.  She had misremembered things, and thought that the physical appearance that is a give-away for Vascular type (but NOT present in all people with Vascular type) was present in all people with EDS.  Things like narrow lips, a thin nose, and protruding eyes, none of which I have.  I have fairly full lips for a white woman, a button nose, and eyes that are neither protruding nor sunken.  I fought her to get the geneticist’s referrals.

After that really awful appointment, I was torn between wanting to cancel with the second (world-renowned) geneticist as a waste of time and being certain I needed to see her because she ‘got’ EDS and that first guy didn’t.  I’m glad I went with the second line of thought; online communities of people with EDS gave me the confidence to go through with it, even though it was going to end up costing me about $700, when you included the travel and the high price of an appointment.  She was amazing and kind and thorough, and checked all kinds of things I didn’t know were relevant, and gave me written recommendations for things my doctors at home could do to help.

The contrast between the two geneticists couldn’t be bigger, and it made me so frustrated to look back on that first appointment.  The chill, the lack of empathy, the lack of time for me, the inability to answer questions…it was just horrid.  It was, at that point, the worst experience I’d ever had with a doctor.  I couldn’t believe how unhelpful he was.  Being able to compare him to the good geneticist just made it all the clearer how awful he was.  I had to talk to my fiance to get verification that he really was as bad as I remembered, because I thought that perhaps my feelings had clouded the way he actually treated me, but my fiance agreed that my version of events was right.

So what do you do about doctors like that?  I mean, of course you avoid them.  Maybe you even write them negative reviews (I left him a pretty scathing one on every doctor rating site I could easily find!).  I thought about writing his hospital about how awful he was; I think maybe I should have, especially the scheduling issue.  Because it’s just not ethical to book someone in for an appointment, have them wait months and pay for it, only to give them insufficient time to actually talk to you about what the diagnosis means and what they should do about it.

Yes, you hope to find the good doctors.  At this point, the geneticist I saw who was so wonderful has a 2 year long waiting list, because she’s so good.  That’s a problem in itself.  And I know I am quite privileged to be in a position where I could A) push my GP into giving me the referrals I wanted, B) get a second opinion, and C) travel to a renowned specialist in my condition.  But even from a place of such privilege, it’s hard to go through.  I can only imagine how much harder it is for someone who isn’t a ‘good’ patient like me*, or who doesn’t have the health insurance or financial resources I have had access to.

*When I say ‘good’ patient, I mean the sort of patient that is perceived to be a good patient by medical professionals.  Young, white, cis, female, well-spoken, middle-class, generally able to be medically compliant and have always had access to medical care, no tattoos, natural hair color, only basic earlobe piercings, no addiction issues, in a steady long-term relationship, etc.  I know my force of personality has also helped me get the care I need, though in some cases it has taken far too long (my autoimmune issues probably should have been diagnosed years before they were, but that’s a post for another day).  I think it’s really problematic that so many of these things that are beyond the patient’s control affect whether a patient is seen as a ‘good’ patient and from there what quality of care they get.  I do have a few things that keep me from being an ideal patient – I’m fat, I don’t exercise ‘enough’ (though I do emphasize that I do as much as I feel I can), I’m disabled, many of my symptoms aren’t quantifiable from the outside, I take a number of daily meds including opioids, so on.  I’m not a perfect patient, but I think my demeanor and ability to advocate for myself usually is sufficient, combined with my ‘good patient’ points, to get me a high standard of medical care.  Other than fighting to see the geneticist, I’ve never been refused any referrals I ask for, and no one has suggested to me that my conditions are ‘all in my head’, even though many of them are hard or impossible for an observer to see.  I’ve also usually gotten the treatments I have decided were necessary.  I’ve rarely had my complaints brushed off.

…sheesh, I think maybe I need to write a post about the ‘good’ patient and how that’s a problem.  Probably talk about privilege a bit too, because medical care is one of the sneakier ways that privilege shows up.  I’ll put that on the to-do list.

Back in the swing? Maybe!

So I’m trying to get back into the swing of writing here.  It’s been a long, long time since I’ve been around.

Let’s try to bring things back up to date.

I finished law school.  That was great.  I graduated, and walked across the stage.  His fuzziness of course walked with me.  Several faculty members personally stopped to congratulate me, since they’ve seen how hard I worked to get there.  My family came, and we celebrated.  It was good.

I moved across the country.  It was a huge move, and it was something of a disaster.  My fiance was working at a site for the Johns Hopkins Center for Talented Youth because frankly, we were in the red, and we needed the money badly.  I was sicker than I’d been in the past, so absolutely useless at getting things packed to leave.  Things just didn’t get packed, lots of things got left behind, we lost our entire deposit on our apartment because of stuff that didn’t get cleared out.  My dad and my fiance drove our car and our pet dog across the country, which I admit I was a bit paranoid about, even though they get along well.  They did fine, though.

My fiance finally got a long-term job.  He’s in academia, and he’d been working one-year positions for the 3 years prior to getting this job.  It’s the main reason we moved across the country, though the climate here is much kinder to me.  It’s amazing to finally have him at a stable, tenure-track job, where he doesn’t have to worry about where he’s working next year.  It’s at a community college rather than a 4-year school, but I think it’s a great fit for him because the college is focused on social justice and accessibility.  Besides, at a community college, he doesn’t have to deal with the publish-or-perish culture of 4-year colleges, and he can focus on his real job: teaching.

Hudson and I are still doing good.  I think he may need to retire next summer; he’ll be 9 and will have served as my partner for 7 years.  I actually had thought last summer that Hudson might have needed to retire now, but when we got to a place with gentler weather and I started being able to do a bit more, he perked up.  I’ve got about 8 months to decide whether he retires next summer; we’ll see how he’s doing closer to the date.

I haven’t taken the bar exam yet, because I’ve been having health problems.  My autoimmune disorder has been diagnosed as Undifferentiated Connective Tissue Disorder (UCTD).  That’s basically medical jargon for ‘your immune system is attacking you, but it’s not behaving like any of the more specific conditions, like Lupus or Rheumatoid Arthritis.’  I’m not sure if my autoimmune problems keep getting worse, or I just keep adjusting too well to my medications.  I’ve been on methotrexate (a chemotherapy drug) since the start of December.  While it made a big difference at first, and it has definitely kept the swelling down, I’m still in a lot of pain.  I’m still trying to figure out how much is the autoimmune disorder, and whether I have fibromyalgia, and what to do about the day-to-day pain I’m in.  I meditate, I stretch, I gently exercise, but I hurt enough that it makes it hard for me to do much of anything.  I hate that – I didn’t go through all that work to get through law school, not to mention all the debt, to not be able to actually practice law!  I haven’t even been able to sit the bar exam, because it’s a huge exam.  3 days, 8 hours each day.  I get extra time because of the problems with my hands and my back, time and a half, so that’s 36 hours of tests.  I just can’t sit up long enough to do that, and that absolutely kills me.

I had my gallbladder removed in March.  I believe the reason my gallbladder had to be removed was the years of living with undiagnosed autoimmune issues.  My liver had been affected by it, and I suspect it attacked my gallbladder, too.  I’m so frustrated, and the more we do to deal with my autoimmune issues, the angrier I get about the rheumatologist who kept swearing that I didn’t have autoimmune issues.  I also get angry at myself – I think, why didn’t I seek a second opinion?  So many of my symptoms looked like autoimmune issues, and I let him convince me that they weren’t because he was kind.

I suppose that’s really all that’s been going on.  I knit, and I read, and sometimes I write, and I surf the net and watch TV, and some days it feels like that’s all I do.  Well, some days, that is all I do.  I just burn to be able to do more.  I really haven’t recovered from how bad things got last summer, and I’m at a spot where I don’t really know what I need to do to recover, beyond trying to slowly work at doing a little more each day.  I need to figure out what to do about my back, and the bursitis in my hips, and a million other little things.  I need to read more and work more on neuroplasticity, and see if I can do something to try to re-program my pain-happy nervous system.  It just feels like such a Sisyphean task some days – I deal with one setback only to have a new one pop up.  Over and over and over, and it is so hard to stay motivated.

But I keep at it, because really, what else am I going to do?  It’d be nice if it didn’t feel quite so futile, though.

I’m so upset!

Okay, so I’m glad the move is basically done. All of our stuff is in our house, most even in the correct room, though of course most of is still in boxes.

But a couple days ago, I discovered something that was lost during the move that has me deeply upset. I collect perfumes from a rather unconventional perfumerie. I’ve always had a bit of trouble with conventional perfumes – some give me trouble breathing, and most give me a headache. So I was very excited when a friend introduced me to BPAL about a decade ago. Over the last decade, I’ve built up a collection that at a guess was worth at least $600; it quite easily could have been more, as I don’t have a catalogue so I can’t tell you exactly what I had. I had something like 25 bottles (though as I remember ones I had, it seems like it may have been closer to 30!) and about 200 small vials.

I had packed that, my essential oils, my shea butter, and other heat-sensitive things that would be a pain to get through airport security in a basket. My fiance was supposed to take the basket in the car with him. Unfortunately, the last couple days there (after I left) were extremely hectic. My fiance worked all day, but he couldn’t get everything out of the apartment – there simply wasn’t room for it in our shipping Pods. In the end, he forgot the basket. Now, we might have been able to fix this error…but he emailed the landlord an apology and permission to get rid of the things he left in the apartment. So my collection was thrown in the trash.

It’s funny the way scents evoke emotions and memories for us. Besides that, it’s one of the few ways I can really feel ‘pretty’ now. My disabilities and the medications I’m on have made me gain a lot of weight. I can’t wear high heels (they are very painful, even if I’m not standing on them). My perfume collection has been part of how I feel good about myself. And now…my whole collection is gone. I’m just gutted.

I’ve tried to make a list of at least the bottles I had. Here’s a partial list – it is by no means complete!

Hunger Moon (probably ’07)
Enraged Orangutan Musk
Xiuhtecuhtli
Mouse’s Long and Sad Tale (Mad Tea Party LE)
Dance of Death
Ostara (not sure what year, maybe ’06? Label was bright primary colors)
Milk Moon (probably ’07)
Beaver Moon (don’t know the year, but I think I bought it from someone along with Hunger Moon, so ’06 or ’07)
Katarina
The Unicorn
Swank
Les Bijoux
Midnight Mass ’10
Haloa ’10
Butterflies and Plovers
Klara (Nutcracker Suite ’10)
The Last of the Spirits (Christmas Carol ’10)
Changing the Shadows (Christmas Carol ’10)
Pomegranate I
Pomegranate II
Pomegranate V

There are some I’m not certain of – I think I may have also had The Butterfly, from The Last Unicorn set. I know I had other bottles I can’t remember right now, and then there were the 200ish small vials.

Thank you!

Hudson and I say thank you! I don’t know who it was, but some lovely person sent Hudson a new puzzle toy and replaced one of his favorite toys (which he had destroyed). Hudson will be very happy when we get home and he gets to play with them. Sadly, there really isn’t space for it where we are right now. We’re visiting fiance’s family for the holidays, and it’s a very full house. We’re sleeping in his mother’s craft room because his grandfather is (rather unexpectedly) staying in their guest room due to health problems.

I’m sure Hudson will be thrilled. This puzzle toy is a good mid-way point between the ones I got him. One is too easy for him, and the other is hard enough to frustrate him, even on its easier setting. I expect this will hit the sweet spot – difficult enough to keep him busy for a while, but easy enough that he’ll enjoy it more (and hopefully do less bashing it with his paws!).

I hope that you are all having an excellent holiday season, filled with warmth and love.

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.

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.

Well, at least there’s news, at last?

Most of you who read my blog have done so for quite some time, and I’m sure you’ve noticed that in the past couple years, I’ve been much more quiet than in the past. I’ve been dealing with pain and inflammation and mental fog and all kinds of fun new symptoms while desperately trying to finish law school. It’s been a rough two and a half years, since the ‘new’ symptoms started.

For a while, my doctor and I thought it might be Lyme Disease. I responded positively to the right antibiotics, and very swiftly. We did several courses, and things improved a bit each time, then got worse again. Despite multiple blood tests, the only things that ever showed up were markers of increased inflammation.

I got frustrated with the status quo this summer, and asked to be sent to the rheumatologist again. If it was Lyme Disease, we had treated it pretty aggressively, and yet I saw no improvement. Besides that, I started having symptoms that are not as much associated with Lyme Disease. For example, I have psoriasis on my scalp, which has been there for most of a year, though it was only diagnosed this summer – I just kept forgetting to ask about it after the dandruff treatment did nothing to help.

Well, we have a general answer now. I probably never had Lyme Disease, but instead have had an auto-immune disease at sub-clinical levels. Basically, that means that my immune system has been attacking me, but not in a way that showed up in blood tests. I got the first positive auto-immune test – an anti-nuclear antibody or ANA test – about two months ago. About a month ago, whatever is going on kicked into high gear – my hands puffed up so that there were days I couldn’t even hold a fork, my feet were bad enough that some days I couldn’t walk, and boy has it been awful. The rheumatologist gave me a steroid to bring down the swelling, and then a week later had to increase the dose because the inflammation rebounded. My hands are now back to about where they were before this latest flare, though I’m still on the steroid so they’d definitely be worse without that. I’d like to eat the whole world and drink a lake. I also have a new found sympathy for menopausal women who complain about hot flashes. I was pretty dismissive before (internally! I’d never say such a thing to someone complaining about them!), but now I’m waking up every hour or two at night because I’ve sweated so much that the sheets are plastered to me and I’m so miserably hot from the waist up – and that’s with the apartment turned down cooler. It took me a week or so to figure out how to more or less balance things; until then, I was freezing from about mid-thigh down and frying on at least my head and often all the way down to my hips. On a good night, it’s only my head that gets hot, so I put a blanket over my body and turn the air down cold and then I only wake up a couple of times. On a bad night, I’m alternating between frying and freezing, and it’s making me groggy during the day.

At this point, there are definitely forerunners in the list of conditions that I might have. Psoriatric arthritis, rheumatoid arthritis, Sjogren’s Disease, and Mast Cell Activation Disorder/Disease are the current hottest suspects, as I understand things, but frankly none of the auto-immune diseases are entirely outside of possibilities. MCAD in particular has been observed to happen at higher frequencies among people who have EDS, so I suppose that may be the most likely, though it’s much harder to test for than the others. The second panel of more specific blood tests is due back any day, so hopefully I’ll have an answer soon. Unfortunately, the answer may well be that whatever I have, while it has been identified as auto-immune, can’t be identified more specifically via blood test. I pray that with an answer will come a more direct treatment. While the steroid is helping, and while steroids are often used in bad flares of rheumatological disorders, they are treating a symptom (inflammation) instead of dealing with the immune system itself. (Technically, MCAD seems to be classified as a hematological disorder rather than a rheumatological disorder, so I may need to be sent off to a whole different specialist, and people who treat MCAD are harder to find than people who treat what are more or less bog standard rheumatological disorders.)

I’m still feeling emotionally blitzed. On the one hand, there is a chance – an admittedly very small chance, but a chance all the same – that the past 7 years of health issues may all be linked to this, and thus may all markedly improve given effective treatment – I might get some semblance of the old Kali back, and the old Kali’s LIFE back. On the other hand, this has been going on for at least 2 1/2 years, and on some level I’m very angry about how long it’s taken and how little my doctors have been able to do to help me. Part of me feels like someone should have figured this out long before now – if the drugs to treat auto-immune disorders were not quite so powerful, I would have pushed for a trial of one long before now, because at least it would clearly eliminate auto-immune conditions, which can run at levels a blood test cannot detect for years, and may very well have done just that in me. I’m worried that the blood tests will be inconclusive, which means the possibility of less pleasant tests like biopsies to look for Sjogren’s. And I’m tired. I’m tired of it being one new thing after the next, tired of being sick, tired of being sickER, tired of the progression, tired of having to watch new symptoms blossom and often be present for long periods before anyone does anything effective about them. I’m frustrated with the whole medical industry, which I know is not completely fair to particularly my GP, who is a very caring individual who has invested a lot of time in learning to treat a patient as complex as I.

Hopefully, I’ll have another update for you all soon with an answer, and then we’ll get to start the treatment merry-go-round. Most medications for auto-immune disorders come with heavy side effects – oh, certainly, nothing to compare to the damage and pain of letting the condition run unchecked, but unpleasant all the same. I’m not looking forward to that part of a potential diagnosis.

And I’ve got to manage to hold things together through December. This is my last semester of law school, and at the end of this I’ll finally have enough units to graduate in May. Finally. It will have taken me twice as long as the average student, but finally I’ll be there. Then…well, I guess I try to open a law firm, which is its own terrifying adventure – new attorneys almost always join other firms, for good reason, and I probably won’t even have the money to hire a paralegal to help make sure things get done right. But that’s the next chapter, right? And hey, if my health evens out…maybe I can find a small firm that is willing to take on someone whose law school career doesn’t look all that great, so that I don’t have to figure out every step of this alone.

Falling on my face

I don’t know if I’ve mentioned this much in the past, but I have sleep disorders. Two, to be exact. One is a variation of insomnia called ‘delayed onset’, which means I have trouble getting to sleep to begin with. The other is called ‘alpha wave intrusion into delta sleep’ or ‘alpha-delta sleep’, which means that my brainwaves switch from delta waves (deep sleep) to alpha waves (normally awake) periodically through the night.

Typically, my sleep disorders are mostly a nuisance. I really can’t do things before noon anymore, my body just isn’t capable of it. Even with sleeping pills, I typically can’t knock myself out until between midnight and 1AM, and I need a lot of sleep. Before the inflammatory stuff started, I needed 9-10 hours pretty consistently; once it started, I typically needed about 12 hours sleep.

Lately, and I don’t know why, my sleep disorders have gone downright haywire. I’ve been having more trouble getting to sleep – 4AM, 5AM, 6AM, sometimes even 7AM roll by and still I’m wide awake. My sleep doctor tells me it’s important to wake up at the same time every day, so I try. Really, I do. I try my normal noon wake up time, and I’m so tired it hurts, so tired that I feel like there’s a lead blanket on top of me weighing me down. I go back to sleep, and wake up a few hours later because of the pain. Once again, I try to get up. Sometimes I make it to the bathroom and back. Yes, back – back to bed. Still so tired that I feel like I’m wading through molasses. Everything is slowed down or sped up, nothing feels like it’s moving on normal time, and it’s so hard to understand sounds around me. I’m sure my fiance’s sounds are words, but what words I do not know. Even when I know what words I’m hearing, it’s hard to make sense of them, hard to figure out what the sentence means. So I go back to sleep again.

I know I’m not supposed to, but here’s the thing: if I try to stay up, if I get out of bed so that I’ll have less temptation to fall back asleep, I just fall asleep wherever I am. I’m more prone to having night terrors when I’m sitting up, and I’m also much more prone to jerking awake. When I have night terrors (which are not at all the same thing as nightmares), I flail in my sleep. I hit and kick hard enough that I’ve fractured a finger hitting the wall and given many a black eye to people sharing my bed (I may have broken a friend’s nose when we were kids, but we’re not really sure – her nose had been broken once by a baseball a few years before that). I’ve had them ever since I was 10 or so. I suppose that means I have three sleep disorders, really, but that one hasn’t been officially diagnosed. It kind of surprises me that I don’t remember my parents asking anyone about it when I was younger, as they were quite violent and frequent.

I digress. Anyhow, if I try to stay awake, it doesn’t work until I’ve had enough sleep. And right now, my body is requiring somewhere between 12 and 15 hours. I don’t feel refreshed, I feel exhausted. Worst of all, I’m out of my sleep medications. I saw my sleep doctor on Tuesday, and he said he’d write for Rozerem for me. Rozerem is not the best of the sleep meds I’ve tried, but the sleep doctor is now concerned that I may have developed sleep apnea in addition to everything else, and the other drug I have tried can make apnea worse – quite dangerous. Anyhow, he didn’t remember to send the prescription, so my fiance called Wednesday, and again on Thursday, and finally the doctor sent in the prescription. Unfortunately, my insurance company requires a prior authorization, so I won’t be able to get my medication until Monday at the earliest (it theoretically could have gone through on Friday, but it appears my sleep doctor is not exactly on top of things, and the part of the insurance company that does prior authorizations isn’t in on the weekends). Meanwhile, I’m a wreck, and exhausted all the time. My pain levels are worse, and I know that the two negative cycles are feeding off each other.

I have the exam for my summer course on July 15th, so I am hoping that things are straightened out ASAP so I won’t be trying to take an exam in this state. I’d be worried about me falling asleep; as a matter of fact, I think I will make sure I have alarms set on my phone every hour or so to make sure that I don’t doze too long if I do fall asleep. Because of my disabilities, I have accommodations for exams (time and a half, special chair, etc) so I take my exam in a little room all by myself instead of in a lecture hall like everyone else. It’s a weird set-up, but it really does help with exam taking.

All this is to say, I feel terrible, and I haven’t been able to catch up with or do anything. I had hoped to work on writing this summer; I have novels that float at the back of my head, and I haven’t gotten to write them yet. I’ve only written two pages this summer. A pair of mages battling an evil defeated but not destroyed long ago await me in one piece that has twenty-some pages written; the avatar of the god of the sea is ready to set sail in another; contact with an alien race and a re-interpretation of a mainstream human religion (particularly as it pertains to love, gender, and sexuality) as understood by aliens lurks in another quiet place in my mind. There’s also a young adult novel that waits there, one about honor and duty, sword and king and country, and discovering oneself and love. I like all of the stories; I think they’re good enough to get the full length treatment. I just…I don’t have enough me to go around lately. I go to class, I read, and I watch TV, because just now, doing the reading and going to class is taking almost all of my ‘me’, and there isn’t enough left over to write. It’s frustrating, to have all these pieces just gathering dust. Hopefully, the 6 remaining weeks of the summer, after my exams are done, will be enough to get some serious writing done. And then, well, back to the grind for one fucking final goddamn semester (you can tell I’m frustrated, eh?) and I’ll be done with this damn degree. Then it’s just studying for the MPRE (multi-state professional responsibility exam) and the Bar exam, and…well, I guess that will be that. It looks like I have the option of taking the MPRE in August, which might be smarter, as I’m taking Professional Responsibility now and that’s all the MRPE tests on.

There’s another thing I want to talk about, regarding family, but I think that will have to be another night, as writing about THAT will wind me up and upset me, and it’s late enough that doing that might keep me up longer tonight. I can only hope I get to sleep before dawn comes.

New home!

We’re still settling in, but we’ve moved, and I very much like our new space. Why? Well, it’s fully accessible. For the first time, I can fairly easily do anything needed for myself. The whole apartment is on one level. One bathroom has a tub, while the other has a no-step shower with a fold down seat and handrails. I can get things to eat in the middle of the night (which I often need to do), because I don’t have to go up or down any stairs. We have more ‘usable’ space – no basement for storage like the old place, but instead we have more square footage of ‘living space’. We moved from a narrow turn of the century rowhouse into a big apartment (similar era, but more thoroughly rehabbed). These apartments were intended to be sold as condos, but the bottom dropped out of the market and they started renting them. We were very lucky to get this accessible apartment. It hadn’t even been advertised, we were here to look at other units, and he mentioned having the one accessible one. It shouldn’t surprise any of you that I pounced on the opportunity and asked to see it. We like it quite a bit.

The dogs are still not entirely sure what to make of the new space. They are also learning how to run on hardwood floors. It really is hilarious to see them when they’re too excited to think about how they’re moving. Bailey gives up on stopping and just collides with things (particularly the love seat). Both dogs almost run in place while they try to start moving, their paws not having enough grip on the floor to push them forward they way they want.

My fiance and I are both very happy with the new space. It’s a much more attractive space. It’s where a pair of young professionals live, not student digs. The sort of place you’d like to have friends over for dinner.

Instead of a dining room, we have a library. We have enough books to cover a whole wall with bookcases (well, to be honest, I have enough books for that – few of them are the fiance’s). We got an Ikea Poang chair, because my angry joints like them, and my old dish chair will be going there as soon as we can get the former roommate to pay for a new cushion (he’d left piles of clothing and whatnot on it, which attracted the mice to it, so they…well, mice are filthy creatures, they excreted on it). Our dining room table is in there, in a corner, but we don’t expect to use it often. When it’s just us, we tend to eat while watching T.V. (I know, a theoretically terrible habit, but it’s at least partially because dining chairs tend to be uncomfortable for me), so it only needs to be pulled out for friends.

We also have a lovely new addition to the house – I am now the owner of a big floor loom. I’ll be able to weave cloth out of my own handspun yarn, among other things. It was a very good deal because it requires a bit of work. Nothing major, it seems – a chain replaced, some straps adjusted, re-tying some bits, and a great deal of cleaning, that sort of things. I’m quite excited to get it going! Now I just need to acquire some weaving books…(yes, I’ll admit it, I’ve quite a thing for books).

Our former roommate left us in an awkward position. He never retrieved his things, and he didn’t pay rent for several months leading up to when we moved out. He left his room an utter and complete disaster that took the fiance about a day to clean up, he got paint on my antique mahogany four-poster bed, and a large spill of it on the carpet. He burned a hole in my duvet cover and got paint on the duvet itself. He hasn’t answered any messages of any variety since January. I don’t know what’s going on; I was concerned for him when he disappeared. Most of what I am left with at this point is that this is not how you treat friends. You just don’t.

So that’s where things stand now.

I’ve finished physical therapy for my back and ribs, and my pain levels are down somewhat. I’m still having trouble with waking up very painful, due to the whatever-it-is inflammatory condition. We still haven’t figured that out yet; it’s been almost a year and a half. For the last say 8 months or so, I’ve had psoriasis on my scalp, though it was only just diagnosed recently. I’m supposed to try a medicated shampoo, but my insurance is giving me the run-around on that. My GP is sending me to a dermatologist, because of the psoriasis and constant irritation on my arms, which could be auto-immune, and could be related to the hand, wrist, foot, ankle, and knee swelling plus the muscle stiffness and pain that gets much worse after stillness or motions repeated too often.

The fiance and I will be heading out to a gym this weekend, to see if we can find something suitable both distance and price wise. The best candidate so far is up a flight or two of stairs, so I’ll have to decide if that’s worth it. The physical therapy place I went to is part of a gym; if this one doesn’t work out for me, I’ll be going to that one and the fiance will probably be going to the closer one. Frankly, the only drawback for me on the PT gym is distance (about 30 minutes driving) – it has all of the machines I need, including some somewhat unusual ones like a rotational torso machine and a upper body ergometry (UBE, aka an arm bike) that would be really good for me. We’d probably both go there, so we could exercise at the same time, except that they don’t have a squat cage and that’s something the fiance is really set on having.

Hudson and Bailey have been continuing about the same with each other. She wants to be close to him, but he doesn’t reciprocate (though he doesn’t try to run her off, and he rarely moves away). She pushes him out of the way to get to things, especially people, but she yields easily to him with anything BUT people. The dogs are mostly settling in. Bailey is more prone to whining in her crate here, because she can hear and see more of us moving around in the apartment, I think. We’ve had a couple episodes of Hudson growling at sounds; it was particularly bad before I trimmed his eyebrows (they had gotten longer than I usually let them, and may have been bothering him). He was behaving much better, but then today he started growling again. If it happens one more time, we’ll be off to the vet to see if there is something wrong with him that I’m not seeing, as a dog who isn’t feeling well is more likely to growl at sounds. The other awkward thing is that there is no longer a yard we can just toss the dogs out into when they need to do their business. We have to put leashes on and walk down the long ramp (but yay, the apartment has a ramp, so I can get out on my scooter by myself!) to let them go on the lawn. Bailey had some accidents in the house, we think mostly due to the stress of moving. On the whole, I suppose they’re dealing with it as well as can be expected, but it’s been a long time since I last moved with a dog in tow, so it’s all new to me.

Neither of the dogs like the bare hardwood floors, nor do my feet, so we ordered some pretty but cheap oriental patterned rugs. They’re thin, but we can always get a good rug pad to back them and make them feel more plush underfoot. That’s another errand for this weekend.

My summer class has started. I have class 3 days a week for 2 hours, so many many contact hours per week, but it’s not too bad. I’m taking Professional Responsibility, which is a required to get my degree. This is the second time I’ve taken this class – the first time, I had to withdraw halfway through due to the back injury. I like this professor VERY much more than the last one. The last professor liked dwelling on all of the hard questions, the gray areas where there aren’t any neat answers. When we’re talking about the rules of professional conduct that I’m required to live by for the rest of my career, I’d like to have answers! I’d like to know what my responsibilities look like! I don’t want to have piles of questions I have to answer ‘maybe’. ‘Maybe’ is a terrible answer.

I mean to work on some writing this summer. So far, though, I keep giving in to the temptation to flick on the TV and veg out with my fiance. I’ll have to change that if I mean to get anything written this summer! I have a couple stories bubbling in the back of my brain, where the loose outline is there, but the details all need to be drawn in.

Summer team training is starting soon for my service dog school. I’m considering going for a day or two, depending on schedules and the weather and my health. I haven’t been in too long, and besides that, someone I know via disability related things online is getting a dog from my school this summer. I’d like to meet her in person! She also has EDS, which would bring me up to 3 fellow EDSers that I’ve met in person. Besides that, it’s good to be with service dog people now and again. They get disability, and they get being kind of forced to be program ambassadors, in a way that people who aren’t just can’t, no matter how well-intentioned they may be.

Hello, world!

Hi out there. I’m still alive. My heart still beats, my lungs still breathe, my body still keeps running along, and my mind struggles to handle the situation.

We know now that my back injury is almost 100% definitely all muscular. The only shadow of doubt is that with EDS, imaging studies can be a bit…less than accurate. What our spines and brains look like when we’re laid out prone and what they look like when we’re upright don’t really match up. I’m hoping to get a set of imaging done on an upright MRI later this spring or possibly this summer. I’m afraid of the results, as I have so damn many symptoms of a condition called Chiari, where parts of the brain (the cerebellar tonsils) lie too low and cause pressure on the brain. It would explain so much – the random waves of vertigo, the fainting and borderline low blood pressure, the tingling and pain in my hands, arms, feet, and legs, the memory issues, etc etc etc. It’s one of those situations where neither answer is good, and I probably should be pushing for the answer faster but to be honest I’m a bit tired just now.

I have a new injury to add to the pile – I managed to dislocate two of my ribs just shy of a month ago. It has been exceedingly uncomfortable, and it flared up the back problems again. Things are settling down, and I’ve been fitted for a brace that may make long-term improvements to the condition of my back. The drawback is that it’s a rather bulky thing, and not terribly attractive. In the short term, I intend to wear it over my clothes; in the long term, I am not sure whether I will buy larger clothes that it can be hidden under or continue to wear it outside or perhaps only wear it when I am in pain. I just don’t know. It isn’t the first time that I’ve had to wear a visible brace – my knee braces are visible when I wear shorts or skirts, and my finger braces are visible any time I wear them. It’s just that when more formal dress is called for, I can easily hide the knee braces with a long skirt, and my finger braces are made of silver and relatively attractive (not to mention I generally only wear them for things like typing and crafting). This brace will be harder to hide. If I buy larger clothes, they will not be flattering at all to my body, and you’ll be able to see the outline of the brace under my clothing quite easily. So at least for now, while I am wearing mostly t-shirts and jeans, I’m not going to cover up the brace.

Anyhow, moving along. I’ve had to drop one of my three classes because of my damn injuries, which is terribly frustrating. I’ll end this semester with 78 units, and I need a total of 88 to graduate. Because of the damn dropped class this semester, I’ll need to add a summer course to make sure I have enough units to graduate. It’s a frustrating situation, where I can look back and say (at this point) that I have paid for and worked on 28 more units than I will have credit for, because I wasn’t able to finish them due to injury or illness. It works out to about a year and a half of my life just thrown away, or at least it feels like ‘just thrown away’. Ugh. And having taken so long to get through law school, the finer points of your basic classes are a bit…fuzzy. I’ll need to re-learn the material in order to take the bar exam. It’s terribly frustrating, all of this, and I don’t have words to explain just how angry the whole thing makes me. I just…I just want to be done, I just want to be practicing and helping people. I don’t WANT to be in any more classes – at this point, I’ve been taking classes for 13 of the last 14 years (one of those at half-time while in high school, but I was taking college classes all the same). I’m more than ready to be done with school.

I’ve got to let go of that now, or I’ll spend the whole night awake, frustrated and angry and spinning my wheels thinking about how unfair it has all been.

Bailey continues to be a lovely pet, though she’s a bit of trouble. She’s been getting into fights at our dog park; what seems to happen is that other dogs get somewhat aggressive with her, and then…well, she may not start the fight, but she’s quite willing to finish it. 3 of the last 4 times have resulted in a minor fight. There have never been any serious injuries, just scratches once or twice, but it’s not good all the same.

We’re moving next month, ugh ugh ugh. I like the new apartment, though it is a little farther from school than the current place. It’s on the ground floor, and it’s accessible (!!), so it’ll be easy for me to get my scooter in and out, and one of the bathrooms has a fold-down seat in it. Wonderful! It’s a 2-bedroom place, and very recently re-done. They had intended to make them condos, but then the market tanked and they became apartments. I’m not sure how the size of our current place relates to the size of our new place – the figures I’m finding online for the square footage of our current place just can’t be accurate! I know that the new place isn’t 50% bigger than the old place, but that’s the lie the internet is telling me right now. I think they may be very similar in size and just very different in shape. Everything is squarer, instead of the long narrow rooms you get in row houses. We’ll have a sitting room and a library, and the second bedroom will mostly be storage for my craft stuff, along with things like my drafting table so that I can paint. I hope that being in the apartment won’t make our dog-related allergies worse, but it’s a definite possibility. Perhaps the hardwood floors will make up for it.

I don’t know if my aide will follow me to the new apartment. It’s not convenient for her, but oh will I ever miss her if she doesn’t come with me. I just discovered that there’s a way to get to the new place that will take her the same amount of time as getting to here, so she just might come with us. That would make me very happy. Having a totally trustworthy personal care assistant/aide is not something you can take for granted. I know that Nikki will do what I ask when I ask it, and do it my way even if she’s got a different way she prefers to do it. I also know she won’t steal, as she’s worked for me 4 years and had plenty of opportunity and never taken anything, even money (accidentally) left in plain sight. She’s also very good at her job and hard working. I’ll be all kinds of torn up if she doesn’t continue working for me! To top that off, there’s no longer a good system for me to get a new aide. It used to be that there were agencies that employed the aides, so if you didn’t like yours, you could request another. They made a big shift in my state on how the aides are organized now, and to be blunt there really isn’t an organization of aides anymore. No one I can turn to and say ‘excuse me, I need an aide!’ All of us who employ aides now have to find them for ourselves. It’s not a great situation in my humble opinion. I don’t want to be putting ads in Craigslist or whatever, and hope that the new person is anywhere near as good and honest as Nikki. Besides all the doing her job well stuff, I like Nikki. She’s good people. And if I’m too far away, it works out bad for both of us, because of that lack of organization. There isn’t anyone SHE can go to and say ‘I need another person to work for.’ It’s just a yucky situation all around. Apparently it’s costing the state less (my aide is paid by my state, because I am disabled and broke).

Ugh, enough of that.

As you can see, things have been a bit more interesting around here than I’d really prefer them to be. All this time, and I owe a company a product review for some stuff that I’m very fond of and would like to tell you about! Not to mention how little I’ve written about my life, and being a service dog partner, and being a law student, and being disabled, and so on. I’ve written near nothing that wasn’t school related in ages. I have piles of notes for my various classes, but nothing personal and nothing literary. Blah. I suppose it’s a pretty good reflection on my life lately.

In the to-do box are things like visits to a neurologist, seeing an ophthalmologist and getting new glasses, packing up and moving into the new place (we take possession on the 15th, and have to be completely out of the current place by the end of next month, so we’ve got a bit of time for ferrying things back and forth). I have a knitted project that I really must get finished, as it was sold to someone in exchange for a large donation to helping orphanages in Haiti. I’ve also got to alter my mother’s Christmas present (I knitted a sweater and it just didn’t fit) and finish my nephew’s Christmas presents (a pair of crochetted lions, which just need to have their faces embroidered on at this point, but I’ve little love for embroidery).

So many things to do, and just the two hands to do it, with one of them twitching randomly in a most annoying fashion. I’ve had a very mild intention tremor since I was 13 or so, but now I have this major shaking both at rest and when I try to do some actions, like holding something still (rather ironic, that, isn’t it? I try to hold something still and instead I shake it). One more thing in the pile. I’ve been having my nails break, my skin dry and breaking out, and my scalp hurting and flaking and scabbing over, and we’re not real sure of why just yet either – it could be my thyroid, but it’s rather unlikely, and I don’t know what the next possibility after that is.

Anyhow, I am rather tired now, and when I get sleepy, I must away to bed. My insomnia is a pain if I do something stupid and work through being sleepy. Good night, everyone, and I hope that things have been treating you better lately than they have me!