Timothy Bryce

Thursday night, Mr. V had an audition for a play at his college. He ended up needing to stay pretty late (which was great!), which meant that I spent a lot of the evening laying or sitting around on the floor of the Performing Arts building (weirdly, this building doesn’t have any seating inside, and outside is just concrete steps). When I got up, my lower back and hips were suddenly in agony. I had to stop a few times walking back to the car and Mr. V finally had to just go get it and pick me up. That night I was in excruciating pain and it hadn’t gotten better by Friday. I went to work, but had to leave after two hours because I was biting back cuss words and tearing up at my desk. (And I don’t spend much time at my desk—most of my day is walking around with students and such.) I made an appointment to see the doctor I was supposed to see on Wednesday.

When I got there, I found that he had actually read my chart! He knew about the list of bizarre health problems I’d had in the last year or so and asked me about them. He took my concerns seriously! Wow! Two in a row! He seconded the referral to rheumatology (and we got it corrected–apparently, the office had marked it as internal, rather than external, which meant I might have had to wait months and months for an appointment because the specialties clinic is always severely overbooked). He also gave me a prescription for prednisone and ordered some bloodwork to check for overt signs of chronic infection. He said that if whatever this is is autoimmune/rheumatological, it might respond to prednisone and that the response would probably be quick and significant. Though the blood tests he could order wouldn’t be as complete as a rheumatologists, they might indicate whether autoimmune disease is likely, though a negative result wouldn’t necessarily rule that out.

I don’t know a whole lot about autoimmune diseases. I have a pretend-aunt (one of my mother’s oldest friends) who has lupus and my sister has Sjogrens. My ex-husband had a friend with RA. I know that lupus has an extremely broad range of symptoms, but I don’t have many signs of RA besides joint pain.

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Image Description: A black and white headshot of Hugh Laurie on a black background. To the right of the image is text that reads: IT’S NEVER LUPUS in a font similar to the one used for the title of House, MD.

I don’t have visible or palpable inflammation, either, but my mom (who has been a nurse for 50 years) explained that inflammation can sometimes be internal and therefore not immediately apparent. I’ll read some more about autoimmune issues today, though, since specialist doctors often use language that non-doctors don’t understand when meeting with patients and then act like jerks when you ask them for clarification. I’d rather have at least a little familiarity with the language before I go in.

Of course, if you look like you know TOO much, they immediately brand you as a hypochondriac who has spent too much time on Web MD and dismiss your symptoms because they assume you’re just listing off stuff you read on the internet, rather than things you have actually experienced. This is infuriating, because I know that at least for me reading about these issues gave me clear, concise language to describe experiences I’ve had when previously I just flailed and babbled at the doctor’s office. It’s much easier to say, for example, that your knee subluxated than that it hurt really bad, felt tight and weird and then sort of snapped or popped into place again but still felt strange and didn’t work right… Doctors almost never take the time to listen to rambling descriptions of things, so if you can’t get their attention with something that sounds “real” immediately, they lose interest and start thinking of ways to shoo you out of the office. It sucks that you have to be so careful, so meticulous with your language when talking to a clinician, especially when your brain is foggy and exhausted, but that’s how it is. I know that I am very privileged to have the education and verbal facility to do this pretty consistently and easily. It’s not so accessible a skill for people who speak a different language from their doctor, who have lower literacy skills, who become really anxious at the office…

Anyway, I took my first dose of prednisone with breakfast, since I was told to take it in the morning with food to avoid sleep disturbances, etc. I’ll write about the results in here later this weekend.

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Image Description: A brown hand, palm up, with three round, peach-colored tablets in it. Also visible is a big lavender coffee mug with Sailor Moon characters on it. In the background is a bin with dancing skeletons and a pile of notebooks.
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Star Wars Reference

I was supposed to meet with a new doctor yesterday, but in fact, I met with a nurse practitioner. I was annoyed that I had to wait 30 minutes (after they rescheduled me) to see someone I wasn’t expecting to see, but it turned out for the best. Long story short, she actually listened to what I had to say and agreed with me that there is definitely something systemic and weird going on. I demonstrated my generalized hypermobility and gave her the long list of joint problems I’m currently having and have had in the past. She was friendly and open and freely admitted that she didn’t know much about connective tissue disorders. She actually asked me if there seemed to be other complications or if it had been getting worse over time (yes, yes). She said that she would look into it and actually did read the fact sheets I’d brought with me. She said that it sounded like that was definitely a possibility, and referred me to rheumatology. I was happy with that, because her reasoning wasn’t “I don’t know, can’t help you,” but rather, “In order to formally diagnose this, we have to a) rule out other possible causes and b) figure out exactly which connective tissue disease it probably is.” Since some possible causes are autoimmune, rheumatology is usually the next step. She also gave me a referral for physical therapy. We aren’t sure if that will actually help, but I want to give it a shot.

In this blog I’ve mostly focused on hEDS and HSD as possible causes of my hypermobility and related issues. However, it’s entirely possible that it’s something else in the “spectrum,” like cEDS or even Marfan Syndrome. Both of those are definitely possibilities, as I demonstrate visible characteristics of both and those same characteristics seem to run pretty strongly on my dad’s side of my family. The traits that would definitely give me either of those, though, are invisible and can only be identified through further medical testing. Both of those are scarier possibilities, though, so I have kind of shied away from writing or even reading that much about them.

I’m glad I had such a positive experience yesterday. I’m not going to float into the next appointments on a cloud of optimism, but I really can not describe how good it felt to finally, for once, be listened to by a medical professional and to have her be willing to help me even though she didn’t fully understand what was going on. It was hugely validating. I don’t need validation from a doctor to know that something is definitely wrong, but it does help me keep faith that there may be help someday when a doctor acknowledges that something needs to be done.

Part of me wants to have a day off to celebrate (and catch up on much-neglected housework), but it’s off to work this morning for me. Two days more and then it’s the weekend, when I can hopefully actually relax and do fun things. The last few weekends have been spent largely in painful rest, so I would really love to be able to actually do something! My pain levels have been lower this week than the last two, and though I have several joints misbehaving, it seems likely that they won’t shift into Extreme Pain and Dysfunction mode just yet.

Plan of Attack

My dr’s appointment is this afternoon. I have printed out and annotated the diagnostic criteria checklist for hEDS from the International Consortium on Ehlers-Danlos Syndromes & Related Disorders, as well as a fact sheet for clinicians from the Hypermobility Syndromes Association. I plan to focus on establishing generalized hypermobility and establishing my history and family history of it. I have been able to talk to my mom about this, surprisingly, and she has revealed that my dad’s side has a pretty strong trend towards hypermobility and the related problems I’ve researched. My dad, in fact, exhibits many traits of hEDS. I never put these things together, so I’m glad she was able to help!

I’m doubtful that my primary care doctor will be able to help much, but my hope is that I will get some referrals out of this appointment, especially to physical therapy. It is possible that he might be willing to at LEAST give me a label of HSD given that none of this can be quantitatively tested, only clinically observed, and I’m able to demonstrate current and past hypermobility all over the place. The label is only important for insurance purposes, I know, but that’s important!

I know that today at work is going to feel long. We may be down a staff member for the day since someone went home sick yesterday, and I’ll be thinking about this appointment all day. Hopefully it won’t crawl by too slowly. Depending on how the appointment goes, I may go to the gym afterward before I pick up Mr. V from his night class. We’ll see, we’ll see, we’ll see!

Planetoid

Last night, Mr. V and I watched the documentary on Netflix about the Barkley Marathons. I’ve always harbored a secret fantasy of running an ultra (not that one!), but every time I have gotten back into running in the last few years–no matter how gently or slowly I approach it–has resulted in debilitating pain and injury. In addition to the chronic bursitis in both hips from my time as a high school hurdler, I have tendinitis in both knees, neuropathy in my left foot, loose ankles and toes that frequently slip and lock up. Distance running just isn’t a viable option for me anymore. There is just too much stress on my joints. Watching the documentary, then, I felt absolutely miserable. I started searching for safe athletic activities I could pursue as a hypermobile person and I came up with…pilates. Ugh. Pilates makes me think of Gwyneth Paltrow and the women who take her absurd blathering as gospel. I could never.

I can, however, and should build strength. Muscle strength helps promote joint stability, and, as luck would have it, I actually love strength training. Rather than sit on this idea for months and spend hours reading and researching good programs and techniques, I made the $1 leap to join a Planet Fitness gym. There is one fairly near to where I live, they are inexpensive and there is a trainer available to help me with my form. I’m actually pretty excited. I have hated spending so much time laying on the couch or in bed, immobilized by pain and unsure what I can do when I’m not crying. I know that this isn’t a cure or even a fix–it’s something I can do when I’m up to it to perhaps help me feel up to it more often. At the very least, it might be a psychological boost to know that I’m doing something to challenge my body. Something that makes me feel alive, rather than like a rusting pile of broken machinery.

I have lifted as a hobby before and enjoyed it. I didn’t even injure myself, now that I think of it! I had a friend who was very knowledgeable about form help me make sure my movements were correct. I’m looking forward to getting back to it, now that I’ve realized it’s something I can do.

The hitch with “working out” regularly for me is that I have to eat to support it. I’m not the best at mindful or even intuitive eating. I have always been a meal-skipper and, often, heavily restrictive. When I start to exercise and feel/see my body changing, I always feel tempted to slide back into those habits. Of course, when you work full time and spend time at the gym, undernourishment catches up with you quickly. Mr. V is following a sort of low-carb plan for his nutrition. I have done that before, but it was very difficult for me to maintain simply because it involved SO much meal preparation. I don’t like cooking. I loved it as a kid, but now it just feels like a chore that produces more chores (dishes and cleanup). I hate taking the time to make almost anything. To lift well, though, you have to fuel muscle repair and growth.

Also, it’s worth noting that my GI issues have gotten worse over the last year, too. I have intermittent IBS and gastroparesis, GERD… It’s awful. Honesty demands that I admit that my terrible dietary habits probably contribute to this (or, at least, don’t combat it). I love cheap, processed garbage. It’s predictable and it is engineered to taste good. I’ve never been one of those people who goes Paleo or whatever and all of a sudden is too enlightened to enjoy Little Debbie snack cakes. They are amazing. All those things considered, I need to make sure I’m consuming enough food to support regular workouts, and I need to make sure that the food I’m eating is healthy…but not fanatically so. I firmly believe that a dietary plan is not worth the trouble if you are miserable all the time following it. And it’s pretty much impossible for me to stick with something that makes me miserable for very long anyway.

That’s a bizarre set of plates to get to spinning, and I definitely can’t get them all going at once. With lifting, I am going to schedule a session with the trainer at my gym so that I can figure out what kinds of things I can do. For nutrition, I think the first thing I want to do is start paying attention to what I’m eating so I can see what I need to improve. It’s important for me not to leap into the sort of extremes that I have in the past. “Exercise-addicted restricting anorexic” isn’t a label I want to wear again, and I don’t think I could take it anyway. That stuff has dragged me to terrible lows in the past–I couldn’t go through that again and I don’t want to. I’m doing this to improve my life, not complicate it!

When I was younger, I exercised and restricted as coping mechanisms. They provided a means of escape, a locus of control, a source of pride in something I did completely on my own. I don’t need to turn to such dangerous practices to gain those things. I have no desire to escape my life–it’s pretty awesome. I direct my own life, and I have done and continue to accomplish a lot of things on my own and according to my own ambitions all the time. I joined EDA (Eating Disorders Anonymous) when I was in my mid-twenties. There, I learned that an addiction, an eating disorder or other maladaptive mechanism can serve as a kind of life raft. You cling to it because it helps you function when everything around you is raging, chaotic rapids. But when you start to get your shit together, those waters turn tranquil and you don’t need the raft. You have to let go of it and start to learn to swim. You may not swim like everyone else does, but you still stay above water and get where you need to go. I think it’s safe to say that I am at a point where I can kick and stroke my way forward without any untrustworthy flotation devices.

I feel better than I did this morning. I feel sick and tired and some parts of me are aching and burning, but my heart doesn’t feel heavy. That means a lot.

Smoke ‘Em If You Got ‘Em

I had been putting off a few tasks until my pain levels descended from the stratosphere. One of those was cleaning out my car. I drive a little hatchback, and I had to put my back seats down in order to fit my chair in the car. There was Stuff all over my car, crammed under my lowered seats, filling my foot wells… I hate having a messy car, but my back had been hurting so badly that spending 20 minutes clearing it out was unthinkable. Today, though, my back has been pretty quiet. (It did yell at me when I had to break up yet another fight between our two dogs, but other than that, pretty calm.) My shoulder was OK, too. So I tidied up my car, and now I feel better about getting in there.

Lately it seems that I have to take advantage of these Good Days whenever I can, since they’re not all that common anymore. I have to be careful not to overdo it, but I always try to do something that I can’t always do because it makes me feel like I my life still has some normal parts! It might seem kind of pathetic that I get so excited about being able to clear out my car, sweep the house or complete a load of laundry. I’m very much a homebody, though, and those are things I enjoy doing and that help my brain feel comfortable. I do a lot of my thinking while I do “chores.” Being unable to do things like that and watching entropy creep through my house is a really awful feeling for me.

I’m going to leave off now because my hand bones and tendons are starting to slip and get stuck in painful positions. I don’t have any supports for those or for my fingers–just my left wrist and thumb after a particularly painful subluxation two years ago. At least I got to do some ordinary things today.

Hair Ramble

Random post!

My back and shoulders are in a good mood today, so I decided to do something with my hair. One of the students I work with has told me for the last few school days, “YOU NEED A HAIRCUT!” They were absolutely right. My hair has a vaguely tight curl pattern, but it’s loose enough that there are always some wiry strands just kind of poking out into space, which looks weird and like I need a trim. Instead of trimming it, I coiled it. I have wanted to try doing freeform locs for a long time. Years. I did have cultivated locs for a year or so, but I took them down because they were skinny and frail. Today, I coiled my hair in a very uneven grid pattern with the goal of letting it do its thing from there.

Kids made fun of my natural hair when I was little. I grew up in a mostly white town, and these kids had never seen hair like mine. Despite knowing nothing about it or how I took care of it, they constantly jeered that it was gross, ugly and weird. My hair was always well cared-for growing up. I was always clean, my clothes were always clean and my mom was pretty meticulous about how I looked whenever I left the house. In high school, kids made nasty racist remarks about my hair, even kids that I had previously considered friends or at least friendly. You know that crack in The Craft where the racist blonde calls one of Rochelle’s hairs a pubic hair? People said that about my hair multiple times over my four years in hell. As an adult, I had a white guy sneer at me that he was sorry the rain was ruining my weave. I didn’t have a weave (in fact, I’ve never had a sew-in, though I’ve worn extensions countless times), and he didn’t even know what weave actually was. He just knew it was something black girls did with their hair and had heard (because he’d never actually interacted socially with any black people besides me) that black girls usually hate getting their hair wet in the rain.

Of course, people with other textures also relentlessly co-opt styles that are traditionally worn by people with afro-textured hair. I was bullied for my cornrows, but when those Jennifers and Allisons went to the Caribbean with their families over Christmas and came back tan with beaded cornrows, that was exotic and pretty. When black people wear clean, styled locs to work, we’re told those locs are disgusting and unprofessional and that we look like druggies. When trustafarians and other “rebellious” non-black people walk around with dreads that look like they were pulled out of a shower drain, they are artistic free spirits. And guess what? Non-black women wear extensions all the time. Sometimes, those extensions are woven in, and extensions can be added to any hair texture. But you never hear jokes about white girls ripping out each other’s weave or snatching wigs. They wear both, but somehow it’s not a punchline for them.

I have heard the argument that locs don’t belong to any ethnic group a thousand times. That’s true. Anyone can grow and maintain clean locs that can be styled suitably for most work environments. Anyone can grow dirty, unhealthy dreads. I wish that everyone would accept that and not assume that just because someone has locs, especially freeform locs, that person is unclean and irresponsible. I once saw a clip from TMZ where the room claimed that somebody didn’t wash their locs, that you couldn’t wash them and everyone was acting like locs were gross until someone corrected them and explained that you can wash them whenever you want and most people do.

If you don’t know how people keep their locs healthy, don’t just assume that they don’t or can’t. Instead, challenge that myth by doing a little research. You’ll find that there is quite a bit of information and commentary out there about caring for locs and what locs mean to various people who wear them. That goes with most cultural practices you don’t understand! If you don’t get something, explore! Read about it. Respectfully ask questions. Acknowledge that people may not want to answer you, that they may have spent their whole lives explaining or defending themselves and that labor costs. Challenge your assumptions and ask where they come from.

 

And How Does That Make You Feel?

I’ve never had much in the way of alexithymia. I can pretty easily identify and describe how I feel, especially if I have time to focus on it. In the heat of the moment, so to speak, I may not be very good at those things, but I usually nail it in reflection. So it hasn’t been a huge challenge for me to explain how I feel about either the autism theory or the CTD theory. For both, it’s a mixture of relief (that it’s not imaginary or “just me”); anger (that no one listened/listens to me when I tried to articulate these issues in the past); grief (that it’s probably not possible for me to have the “normal” sort of life that I’d always thought I would eventually grow into) and fear (because now I don’t know what to expect in my future). It’s the fear that I want to write about.

As I mentioned before, I hate uncertainty. I’m anxious-bordering-on-panicked when I don’t have a plan. This goes for simple, everyday plans as well as huge, life path plans. I become markedly calmer when I develop one, even if I know that it’s probably going to change dramatically at some point. Also, uncertainty makes me hyperfocused, sometimes on things that don’t really matter. If there is something in my life that I’m unsure of how it will develop, or how I will handle it, I obsess over it until I hammer something out, ignoring or forgetting other things. That’s happening now, because the thought of not knowing how my body will function a month, a year from now is terrifying. The thought of not knowing how my doctor will respond on Wednesday is terrifying!

I’ve always wanted to be a more Type B person. Someone who “goes with the flow” and adapts as things come up. Someone who doesn’t need to have everything in place before the curtain goes up, and can shake it off when life catches them unprepared. I do adapt, but I adapt frenetically. I am not a relaxed person at all, though I’ve been told I seem that way. I go from rigid, complex plan to rigid, complex plan and the transition is always harrowing.

I am afraid. It’s as though the lighted path I had into tomorrow and ten years from now has suddenly gone very dark. All I can see is right now. I can fumble around on my hands and knees, trying to feel my way, or I can go slowly, stepping where I can see, trusting that I’ll get where I’m supposed to go. I have been struggling to figure out how I’m going to handle this if I go back to school to get another teaching credential. If I move to California. If I have to go to the grocery store by myself. If I can’t stand up on my wedding day. If, if, if, if, if. It’s exhausting to try to stave off uncertainty this way, especially since I know that I can no longer predict my body’s condition or functioning at all.

So maybe this is the universe giving me a chance to try out the Type B way. There are things I can prepare for. For example, I can have notes for my doctor’s appointment, but since I’ve never met him, I can’t actually prepare for his response. Instead of planning out everything, stuffing contingency plans in all of my pockets, I can have my resources ready and then act according to what the day brings. I feel like spending less time writing and rewriting my strategies, especially for insignificant things, will allow me to approach my body’s obvious decline with more gentleness and, dare I say, grace. Having fewer expectations means making fewer frantic, emotional adjustments. It means not having to play catch-up with my day. This won’t be an easy paradigm shift, but I think it will be good for me.