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.
Brilliant Mind Broken Body 
Wow, I’m glad I kept a watch on this blog. Glad to see you finally made it and got that law degree!
Moved across the country, eh? That means you live closer to me now (in theory). If you still have any of my contact info (I don’t think much has changed) you should shoot me a line. I’d like to drop by to meet you in the flesh after all this time.
I’m so glad to see an update from you! Your blog is one of the reasons I decided the way I did on getting a service dog, because you were always real about the good and the bad.
I’m sorry you’ve been going through so much. Congratulations on graduating!!!!
I stumbled across your blog looking for EDS blogs.
My “official” diagnosis is fibromyalgia with a general consensus that I also have EDS-HM. In fact, EDS was brought up years fibro diagnosis. Personally, I’ve always suspected chronic fatigue syndrome because, while I had some issues that could be attributed to EDS, I feel like things really went off the rails when I got mono. I just never completely recovered from it and that was the start of the horrible fatigue. Based on my personal research, it seems like there’s a huge overlap between fibromyalgia, chronic fatigue syndrome/ME, EDS-HM, and joint hypermobility syndrome and since they strongly rely on self-reported symptoms and don’t have an actual test, the diagnosis is going to vary between doctors. Since, in my case, the treatment isn’t going to vary that much based on one diagnosis or the other, it’s just not worth the headache of seeing multiple specialists to try to get a specific diagnosis. So right now, I’m just focusing on treating symptoms and trying to make a few lifestyle changes to see if they make any different. Easier said than done when my effort at graded exercise therapy ended in a fever and more fatigue.
The main reason I’m posting is we seem to have common career paths. I started pre-med and ended up going to law school. In my case, it was partly because I realized I couldn’t handle it physically and partly because the fact that the suicide rate of female med students was higher than the general population. So I went into law, which is obviously the best job ever for mental health. I graduated and passed the bar (it took two tries because the first time, I was stuck directly under an air vent in an already ice cold room. I was miserable for two days and I passed the multiple choice, but missed the essay cut off (second day) by two or three points. I also rushed through the last hard of the essays because I literally couldn’t stand being there.
I can’t give you advice on bar prep because I wouldn’t listen to my advice on bar prep. I did maaaaaybe a tenth of the prep I was supposed to and managed to get by since my state doesn’t have a super hard bar exam (and I do well on standardized tests). But if you have questions about sitting through a two day exam (which is what my state) with fibro and a hypermobility disorder, I can definitely help you out with that. (Fingerless gloves. Seriously. I didn’t need it the second time, but I kept wishing for them on my first try. And if you’re temperature sensitive, make sure you get seated in a comfortable place.)
I’m not currently working as a lawyer now, partly for health reasons and partly for family reasons, but I’m trying to ease into it, mainly by taking cases for my state’s legal aid services which actually pays (although it’s reduced) for you to work two cases if you commit to working the third one free. I’ll also probably do some guardian ad litem (or whatever my state calls it because they changed it to something weird) cases. It’s really frustrating, though, because the only other lawyer I know with fibro quit practice and opened a knitting store. Most of my online searches for lawyers and fibro, EDS, and other illnesses generally end up with page after page of how to choose a lawyer and get disability benefits. It can get disheartening. It’s nice to find other people who are in similar circumstances, even though I wouldn’t wish it on my worst enemy. Oh, who am I kidding? I totally would. If I had the ability to wave a magic wand and let someone else have to deal with this stuff, even for a little while, sales of NSAIDs among certain people would spike and I’d be in my orthopedist’s office, telling him I have no idea how I ended up aggravating my shoulder. 🙂
I really suggest you STOP KNITTING. It’s a waste of your joints! (I have had EDS for my 29 years and my crocheting did some irreversible damage. NOT WORTH IT!! I suggest you take up a hobby that is easier on the hands, like Tai Chi)
That’s just not something I’m prepared to do at this point. I really deeply enjoy knitting; it gives me a great sense of satisfaction.
We all have to pick our trade-offs. As long as I use my splints, and don’t keep at it for too long, I’m not doing all that much harm. *shrug* I’m drawn to creating things in a very intense way, and I feel extremely dissatisfied when I don’t have something I’m working at. It’s rather demoralizing for me. I’ve had to give up almost all of my physical habits. Making things is the only one I have left.