I finally got it on paper: Ehlers Danlos Syndrome, hypermobile type. I keep thinking I need to sit down and write how I feel about it and what’s to come, but every time I try, I can’t think what to say. My rheumatologist diagnosed me, and also labeled my obvious autonomic dysfunction. On top of that, he looked at the MRI images of my lumbar spine and called out degenerative disc disease. So, in like ten minutes I had answers to questions I’ve been asking for years. Maybe it’s because I had already answered the questions for myself that it seems so anticlimactic?

On the one hand, I’m thrilled to finally have a piece of paper I can wave in everyone’s face. Everyone who doubted me, who gaslit me, who told me I was faking or exaggerating. I can show it to every doctor who proposes psychotherapy or anti-inflammatories.

I’m thrilled that I’m finally exploring pain management options that have even the slightest chance of working (I’m on gabapentin right now, seeing how that goes). I have treatment ideas that are actually relevant and not grossly dismissive, inappropriate or inane. Those are all really good things.

I feel like I’m “officially” disabled, despite having been clearly disabled for quite some time.

I’m angry that validation from some doctor somehow gave me permission to really call myself that, to really devote myself to caring for issues I’ve known were there for years. To stop holding my breath and telling myself I might wake up tomorrow perfectly fine. To accept that this is truly a new normal and that nothing is going to be as it was when I was 20, 25, even 30.

Mostly, though, I’m just…relieved? This exhausting process of chasing and fighting for some diagnosis, any diagnosis is finally over? I’m having trouble getting that through my head. That it’s over and now I can focus on treating, accommodating.

I’ve used my chair all week at work and felt so much less anxious or guilty about it today. (Tired of fielding questions and comments about it, but whatever.) I’ve been able to tell myself firmly that the chair makes my day easier. I’m less fatigued, less stressed out. (As it happens, being in tachycardia all day is tiring! Subluxing knees, ankles, hips? Painful. Tiring.) I feel weird that diagnosis allowed me to accept that.

Still, it’s a new beginning. I’m working on it.


In the Name of the Moon

I wrote in my last post that I have Ehlers-Danlos Syndrome. What!?? Nikki, you said in this post that you were diagnosed with BJHS. Sounds like diagnosis creep! (I don’t know if that’s a thing, but it seems like something that derisive doctors would snigger to each other about over expensive coffee.) I have been doing more reading, like you do, and it seems that it’s more than just a few rogue geneticists and rheumatologists who no longer recognize a distinction between “BJHS” or “HSD” and hEDS. It’s the majority of experts on Ehlers-Danlos. Dr. Tinkle wrote an article way back in 2009 for the American Journal of Medical Genetics stating that the two (three, really) labels should be merged in order to better serve patients. The diagnostic criteria that doctors currently (at the time of the article and now) rely upon to make the distinction between hEDS and BJHS/HSD are actually incredibly subjective, not reproducible and highly variable depending on factors like age, race, gender and life experiences. (For example, a bricklayer is probably not going to have “soft, velvety skin” all over–certainly not somewhere they’d be comfortable having a stranger stroke to assess–whereas a young child almost invariably will, EDS or not!) The result is that doctors are unwilling to label patients with hEDS and dump a dangerous label like BJHS on them. The general consensus among people who know anything at all about current research in CTD’s, particularly Ehlers-Danlos, is that BJHS/HSD is indistinguishable from hEDS. The same symptoms can be present, in addition to others. Tinkle proposes, as do others, that until a more definite answer can be found, that hypermobile patients who exhibit the sort of cross-categorical symptoms found in hEDS and other CTDs but who do not fit the more established, objective criteria for syndromes like Marfan or other EDS types be given the label hEDS because it provides them with better options for treatment. (It’s possible, of course, that some people are “benign bendy,” but they seem to be as rare as EDSers are perceived to be!) Here is a summary of information about BJHS vs EDS on EDSInfo, if you would like more resources.

I would argue that it also provides us with more peace of mind. Being told you have “BJHS” is essentially being told that yes, you are bendy, but all of the other stuff you’re reporting is nothing, is fake, is not worth worrying about, even though you know it is diminishing your mobility, your overall health and your independence. “BJHS” is a throwaway label that allows lazy, ignorant doctors to close your file by gaslighting you. It’s dangerous, and I refuse to accept it.

I wrote on Twitter that while doctors never believe anything I say about my health or my body, they always believe what I tell them other doctors have said. I never transfer my medical records anywhere because it’s a pain in the ass. I’ve changed my name three times and have lived in various towns over three states in my adult life. I’ve seen countless doctors, many of whom were in clinics or urgent care facilities the names of which I can’t remember. But when I start with a new doctor, I fill out the history form with the diagnoses and observations that previous doctors have made. Not a single doctor has questioned a previous doctor’s diagnosis of other chronic complaints, like asthma; GERD; anorexia (or any other mental disorder); reproductive issues; skin issues; eye problems or even the necessity of previous surgeries, no matter how weird (bunionectomies on both feet at 12? OK I GUESS!). Not a single doctor has ever doubted the word of another doctor.

It’s possible that this doctor will change the label when I next see him, but since my next appointment is with his NP, who flatly and immediately denied that anything I described could be related to my widespread joint pain and hypermobility, that seems unlikely.


WHAT EVEN ARE JOINTS? Image description: A flamingo is sitting up in a pool of water, its legs flailing backwards in the air.

So, in future, I will refer to this constellation of things as Ehlers-Danlos Syndrome, Hypermobility Type, until differential diagnosis proves it to be otherwise, since according to people who actually work with and research this kind of thing, that’s what “BJHS” actually means. The fact that a 60-year-old rheumatologist in Phoenix, AZ who works almost exclusively with elderly osteoarthritis patients failed to read current writing on the terminology and update his accordingly is not my problem. Flamingo legs and feet are my problem. My spine is my problem. Orthostatic intolerance is my problem. This random bruise that I don’t remember getting is my problem. The fact that I can’t eat more than half a meal without feeling like I’m going to die is my problem. My elbows of burning (+2 fire damage) are my problem. My pinkie fingers’ desperate desire to flee my corpus is my problem. Running into objects I am intensely watching to avoid running into them is my problem. My feet hurting for no reason for three years is my problem. My surround-sound hips are my problem. hEDS is my problem.

Back to Back

I had my lumbar spine MRI on Tuesday, and have been staring at the images for a few days, wondering if there is anything in them that this doctor will see and acknowledge as the source of my woes. Not being able to sit or lie down for more than a few minutes without spiraling into pain that makes my brain flicker like it wants to just power down is an imposition on my life, you know? The lying down business is the part that made the spine doctor pay attention to me, and it is perhaps the weirdest thing about this. Lots of people have lower back pain. It’s one of the most common complaints on the planet, probably. However, most people gain relief from resting and can find a sleeping or resting position that eases their discomfort somewhat–at least enough to fall asleep. I do not. In fact, my back pain is worst when I’m laying down, and there is no position that even lessens the pain. When I fall asleep, it’s usually because I’m so exhausted and pained that I just pass out. I wake up often, and when I wake up to get up, my back is stiff and uncooperative for close to an hour before it remembers how to spine.

In addition to this, my hips seem to be involved in this issue, as well as my bladder. I don’t like writing about this kind of thing, but I created this blog in case others are going through similar things, so I want to mention it even though it is icky and embarrassing. I have a hypothetical diagnosis from my GP of interstitial cystitis, and occasionally have bladder incontinence or leakage problems. This is highly unusual for someone my age (34), especially someone who hasn’t given birth or had any other trauma to the junk area. I’ve had frequent urinary and bladder inflammation and whatnot since childhood, but the leaking is a relatively new incursion that I wish would just go away.

These things seem to point to the Spine Thing being something more than angry muscles or something, which is what doctors have been trying to blow me off with for quite some time. Heat; ice; muscle relaxant meds; NSAIDS (the latest one was diclofenac, which did nothing at all); stretching; strength training; the exercises I learned in PT–none of these things have done anything at all to reduce the pain or other symptoms. The only thing that diminishes it is standing up and walking aroundbut not for very long. Walking all day (at work, for example) or even just for sustained periods (like around Wal-Mart or a mall) leaves me feeling weak at the hip joints. I can barely pick up my feet to walk, and my sacrum/pelvis combo starts grinding and screaming. The grinding sensation is really scary. It feels like the very base of my spine is just being crushed into powder and the dust is mucking up the mechanism that allows me to walk. It’s not awesome.

My fear, though, is that nothing on this MRI will account for what I’m “reporting,” and the doctor will assume I’m exaggerating and say there’s nothing he can do for me. My theory is that maybe it is something like ankylosing spondylitis. The symptom profile seems similar. I know that people with AS are supposed to respond well to NSAIDs, but, I have Ehlers-Danlos‡ (or the still possible but only remotely possible Marfan Syndrome), so NSAIDs are never going to be effective for me. It’s that little hiccup that made my GP say AS was impossible, and I didn’t yet have a rheumatologist acknowledging that the hypermobility was a CTD, so there was no point in trying to explain (again) that pain meds never work for me for anything. Uggghhhh.

‡I’m about to write a post about why I say that. Please hold!

Special Educator

I don’t write much about my job, but there is something I want to address briefly. That is the question of teachers with disabilities that would qualify them for special education services if they were still K-12 students. Many teachers that I have met seem to believe, even though they may be special education teachers trained in the diversity and complexity of disability, that there are no such teachers, except perhaps for those disabled by injury or age. This means that the phenomenon of being talked about as though you are not there (because you’re not visible to the conversing group as part of the target group) happens a lot. I hear a good deal about autism, much of which is incorrect, offensive or oversimplified. I had a teacher tell me once that she would never want to take autism home with her or have it in her house. I also hear a lot of scaremongering, fear and cruelty about mental illness. And a lot of dismissiveness about the capabilities of students with intellectual disabilities, or who are non-verbal. It’s really frustrating and disheartening.

A lot of days I go to work and leave thinking, “Nothing about us without us.” Although this statement is usually applied to media representation, I think it is very appropriate in education! Educators (of all categories) are often unaware of what actual disabled people think about their disabilities, what we want or need. Our voices are discounted or simply not even thought of.

I went through school as a gifted student and an unidentified autistic. I heard a lot about how smart I was, and now I hear a lot about how frustrating I apparently was. I hear a lot about how gifted kids are a pain in the ass because they’re knowitalls or underachievers. I hear a lot of gross, blanket statements about autistics. It hurts to know that this is how educators see students like I was and adults who are like me! I don’t keep my disabilities or exceptionality a secret, per se, but I don’t talk about them much (aside from answering questions about my physical disability, since I sometimes miss work or show up with new mobility aids) because I don’t talk that much about my personal life. No one at work really knows much of significance about me, except that I am engaged and I have dogs. Also that I’m kind of a nerd, since I am easily able to keep pace with student conversations about various Marvel and DC characters and events. I’m not keen on that changing, since I think perceptions of me (and thus treatment of me) would change if people knew. That’s not surprising, necessarily, but it is really disappointing.

It’s not just the people I work with now, either. I have encountered this bias and ignorance in a lot of schools. I don’t know if people aren’t trained very well regarding disability, if they’re genuinely ill-willed or if they’re just indifferent toward how their language and behavior are interpreted. I’m not sure if it matters why people act this way, only that they do. I wish that it would change, and I hope to be a force to change it as I enter a new role in the field.

Executive Dysfunction

I sometimes struggle with executive function stuff. I often neglect paperwork (especially bills) because just looking at them is terrifying. I forget about appointments all the time, and I never call to cancel things that I know I can’t make it to. I am a terrible notetaker, as well, and the information I do get down about events, people, etc. is usually frustratingly incomplete or cryptic. (Doesn’t help that because of my terrible hand and finger joints my handwriting is godawful.)


Tonight I knocked out almost all of the application materials for this teacher in residence program I’m hoping to complete. All that remains is to get two recommendations. I already asked two people to do them, and have sent the forms to them. The other outstanding task is to send official transcripts, but I had to send an email asking exactly where to send them, since I couldn’t figure out how to address them. And I did that! From there, the next step will be to apply for an “intern” teaching certificate from the state and apply for teaching positions. I already contacted a few districts, including the one I currently work in. My old district said that they have immediate openings, so I can start the application process and then hopefully interview once I have the certificate. (Here, you can get an intern or emergency certificate if you are currently enrolled in a state-approved residency or internship teaching program, so once you have proof of that, you take it to the Board.)  I hope that I can get hired for the spring semester!

I feel proud of myself for being so proactive and productive with this, but it has been exhausting. I’ve had to send a lot of emails and make a lot of phone calls, which I hate doing. I prefer email communication, but I hate waiting for replies, and I hate insufficient or irrelevant replies even more. I can’t stand talking on the phone. I get nervous and I babble. I repeat certain words excessively (one of them is “definitely”). And voicemail is the devil. I don’t like leaving them because I believe no one ever actually listens to them, and I, myself, despise listening to them. It gives me horrible, totally irrational anxiety, and I have been known to leave my mailbox full for long periods of time just so that people can’t leave messages. Texting is my favorite method of communication because it is in real-time, but it also eliminates the anxiety of talking extemporaneously. Anyway, I’m very tired now! (The little dog also woke me up at 12, 3 and 4:30am today. It’s really hard for me to fall back asleep when I am awakened because of pain, so that meant that I barely got any sleep last night, either!) Tonight the plan is to watch another episode of Stranger Things 2 and hopefully fall asleep quickly and deeply!

By the way! I am so annoyed by all the Stranger Things spoilers everywhere! The new season has been out for less than a week and I saw spoilers within hours on Thursday. I think that’s really rude and I wish people wouldn’t do it. I know you’re excited, but when you splash that stuff on social media where people who may not even follow you or know you can’t avoid seeing it, you’re ruining something for them! If you have to post about something so soon after its release, can you at least tag it or hide it behind a link? I feel like that’s reasonable! It’s one thing for people to complain about spoilers for media that’s been available for months or years, but when there are season finale spoilers popping up for something released 24 hours before? That’s just a dick move. Anyway. /rant

Exercise Fail

Today I tried following a gentle, chair-assisted yoga video I found on YouTube in the hopes it would help me relax after a stressful day. The movements felt good, but I was out of breath and my heart was pounding the whole 25 minutes, even though much of it was seated. I had to stop several times to get my heart rate under 100bpm. I did find some videos for POTS specifically, so I might try one of those later in the week.

I’m having a Tight Chest Day. My ribcage feels a size or two too small and my sternum is straining and creaking when I try to take deeper breaths. It’s a hard feeling to describe, and since most people haven’t experienced it, they don’t believe it can happen. Well, you can dislocate or subluxate your ribs, and your chest can decide it doesn’t want to expand normally. Those are things that happen to people, and they are alarming and painful. So there.

I’m also struggling to breathe because I did a lot of yard and house work this weekend, and there is consequently a lot of dust flying around. Our yard (both front and back) is basically loose, sandy dirt. The house is poorly insulated against it, so it’s a constant battle to keep its presence inside to a minimum. Add three furred pets and it’s a wonder I can breathe at all, given that I have asthma and my lung capacity has been diminished by several very long bouts of severe respiratory infection in the last few years. I didn’t realize how bad it was until last night when I was struggling to breathe effectively while trying to go to sleep. I kind of want a respirator mask, They’re pretty expensive, though, so wish list it is…

Fall Cleaning

This has been quite a week. I’m back at work, for one thing. I used my wheelchair the first four days, but by Friday my crap shoulder was separating with every movement so I had to rely on my cane. The wheelchair is really helpful for my heart Thing, but it’s really difficult to use it all day. My back felt better, but it seems that sitting down most of the day is eventually also painful. I have an MRI scheduled for Halloween, so hopefully that’ll yield some answers about what can be done. I have suspicions about what is going on, but without imaging there’s no way to know. Anyway, work has been stressful as usual, but I’m doing the best I can. I also started trying to take Diclofenac regularly to give it a chance to work. At first, I could only take it at bedtime because it was so sedating, but my body seems to be adjusting to that. I can’t tell yet if it’s making much of a difference, but I think it might be?

Lastly, it looks like I’m not going to be able to pursue the college plan. It’s just not feasible right now. Instead, I’m looking into options for a new credential. As bad as conditions for teachers are here, I’d rather be a teacher than do what I do right now, for a number of reasons. We’ll see how this pans out–I have to wait to hear from a few people about my ideas.

My brain has been really static-y the last few days. I’ve had a lot on my mind that I don’t want to write about on this blog, but this weekend I felt like I really needed to start doing things to get me out of my thoughts, to stop me from perseverating on these things. Yesterday, I cleaned the house. Most of it is looking pretty good now, though the laundry room and the storage room are a mess. Today, I decided to tackle some yard work. I attacked the front yard for a good hour and a half, trying to get as much in as possible before the sun came up. It was really cathartic and allowed me to clear my head. There’s still more to do (not to mention our post-apocalyptic backyard), but I feel good about what I’ve done. I thought I’d be in agony, but honestly, the pain is manageable. My joints and back are aching/burning, but not that much more than usual. I think that activity actually helps my back. It hurts most when I’m laying down or slouching in a seat. Standing and walking around for a long time is very painful, but it’s really never as bad as it is when I’m laying down, which seems odd. Anyway.

I also think I need to break myself out of my head more often. Lately, as I’ve written before, I’ve kind of lost sight of the stuff I really like to do. I like reading and writing, and I have been reading a lot. I decided to do a pants-er NaNoWriMo effort, so I’ll be starting that on Wednesday. I think it’ll be good, free therapy. I also want to find a hobby that gets me out of the house occasionally. It doesn’t have to be elaborate or expensive, just something that I can look forward to and think about. My life has been work, health problems and household issues for months now, and I need to bring other elements back into my orbit. I do better with organized activities. I’ve always wanted to do SCA, so I’m thinking about trying that. I’m looking into what kind of events and activities my region (Barony of Sun Dragon) holds.

One reason therapy has never been very successful for me is that it’s very internal. I go to sessions and talk about things, and then I go home and think about them. A lot. Self-reflection is a good thing, an important thing, but I think it’s becoming a fortress of solitude type thing for me. I spend so much time thinking about myself, my life, my decisions, etc. that I don’t really participate in the real world. I’m very introverted, so it’s easy to say that I don’t want to Get Out There, but at the same time I think I have to acknowledge that some degree of presence in the outside world is important and healthy. I don’t have to be a social butterfly with a full calendar, but being completely isolated in my own little echo chamber isn’t good for me. It fuels my anxiety and the more detached I become, the harder it is to engage. I’ve vowed to contact the Seneschal by the end of today, knowing that I’m scared to do so but need to reach out! (I have been participating more in online communities, but that feels more support-group-like, less social.)