Striped Girls Can Jump?

Reminds me of a few people I know!!
<Image Text>: “Your flexibility amazes me. How do you get your foot in your mouth and your head up your ass all at the same time?”

People have the strangest reactions to learning about Ehlers-Danlos Syndrome. So, telling them about it when you are already socially awkward quickly becomes a study in ridiculousness. For instance, I got to have that discussion recently with my hair stylist. It ended with me jumping up onto things alongside the majority of the salon staff. I promise there was no alcohol involved. I just would rather do practically anything – including impromptu social experiments – than make “small talk.”

My stylist knows that I have dysautonomia. I hadn’t exactly planned to tell her, as how does one broach that conversation during “small talk” at a salon, but fainting in her doorway last year kind of forced the choice between sharing the diagnosis or paying whatever the deductible would have been for an ambulance ride when the owner was afraid otherwise I’d die on him – or worse sue him. My old office, before my bully-of-a-boss fired everyone in it and made its lone survivor a fully remote worker, used to have a faulty heater. I had to wear a sweater, an undershirt, and a camisole just to keep from turning blue in that office most of the year. In winter, I’d then add a big heavy waterproof coat, scarf, gloves and hat on top of it to walk the about ten minutes from my office to where I get my hair cut. I learned last winter that just because it is 50 degrees inside your office and about 20 degrees outside, some salons will inexplicably choose to keep their facilities at about 80 degrees. If you walk into one of those salons wearing all those layers, you’ll pass out in the doorway from the dramatic temperature change. At that point, the cat’s out of the bag.

Now I have a cane. And, I use it to go to the salon. It is, once again, twenty degrees outside and still inexplicably about 80 degrees inside. Having my cane for balance seems especially prudent since, in addition to my faulty autonomic nervous system’s desire to pitch me floor-ward, the abrupt thermal change also fogs my glasses and leaves me effectively blind while maneuvering the six stairs to get down from street level to the salon during my period of thermo-non-regulation. I don’t think the owner would call an ambulance a second time, but it’s still good to have a balancing aid for extra reassurance. The official mascot for EDS is the zebra, but I don’t think there is one yet for dysautonomia. I’d like to propose the turtle. We are as unable to regulate our body temperature as a cold-blooded animal, we move slowly, we armor ourselves in protective outer shells – er, compression bodywear – and we spend most of our time horizontal.

Not having a cane and then later having a cane elicits questions. I’ve almost perfected my answer to, “Couldn’t you just take collagen supplements?” That is the usual first question I get upon attempting to explain EDS to someone new. My stylist, however, skipped the usual questions. She didn’t ask about collagen samples or yoga – or make any snickers about how my Partner probably “enjoys” my flexibility – because she’d already asked at least a few of those questions of someone else first. I am, it turns out, one of two (!!) clients of hers that have Ehlers-Danlos Syndrome. The other one had already fielded most of the first-level questions for her, including explaining why collagen supplements don’t work. Thus, I was able to skip immediately to clarifying the one still-open question that remained after zebra client #1 had thoughtfully fielded the first set.

I gather this mysterious zebra now has a fantastic doctor that she sang the praises of to our stylist, but she only obtained her diagnosis after years of first being dismissed and/or misdiagnosed by the rest of her doctors. She seems to have shared her entire diagnosis story. The “years of being dismissed or misdiagnosed” is the part that stuck with me from her story. But, for my stylist, one other detail tiny detail captured her imagination.

Zebra client #1 said that she knew that she’d finally found a doctor that could help her when that doctor watched her hop up onto the exam table and immediately asked, “Have you ever heard of Ehlers-Danlos Syndrome? You jump like someone who has it.” My stylist asked if I jump like a zebra, too. I can honestly say, though, that prior to that secondhand story I hadn’t known that “jumping onto things” was a potential diagnostic feature of EDS at all. I also couldn’t quite mentally imagine what “jumping like someone with EDS” might look like. How many ways are there to jump anyway?

After I failed to resolve my stylist’s lingering curiosity, we moved on to the generic small talk that is the norm during things like haircuts and manicures. Did I ever mention that I hate small talk? So, when my stylist later noted that I didn’t use the step stool to climb into her styling chair – I kind of bounced into it? – I suppose I could (and maybe even should) have politely steered her back to small talk. Running commentary on how I move is a bit outside of the norm for the kinds of conversations one usually has during routine service appointments. But, I’m socially awkward and I have ADHD. Generic small talk is intensely stressful for me. I think I use more spoons trying to keep to ‘polite conversation’ then I do just bouncing up and down on things to satisfy random curiosity.

My stylist theorized that perhaps the tendency to “bounce” instead of “step” up onto things is what that doctor had noted is more common in EDS. This, of course, led to the stylist in the next chair, who had overheard the conversation because the salon isn’t very big, pointing out that far more of her clients bounce into the chair than the statistics I’d given suggested could possibly have Ehlers-Danlos. Thus, maybe it wasn’t just the “bounciness” itself, but the fact that a doctor’s exam table is high enough up that most people can’t bounce onto it at all that matters?

And this is when we realized that I was the last client in the salon and the check-in counter was about the same height as a doctor’s exam table. Thus began our social experiment. I can, in fact, bounce up onto a counter of exam-table height without any need for a step stool. However, so can about 25% of the salon staff. What none of that spry 25 % can do, though, is also lift a leg up high up to place it on the counter and then spring up off of the other leg. EDS: I can lift my leg up as high as my own head to spring onto something, but I can also dislocate an ankle walking down a flat, paved sidewalk. I’m a study in extremes that way.

The contrast between my simultaneous “bounciness” and need to use a cane to not fall over in the hot salon while standing near the counter while the others attempted to complete their own jumps seemed to accomplish what my prior more technical descriptions of EDS have so far failed to do: make non-zebras go, “Wow, that sucks.” I’m not sure if that’s because bouncing on counters is an effective explanation or just a memorable one. It was, at least, a change from the usual blank looks I get when explaining EDS technically. And, I can’t overstate that it also got me out of small talk.

Being a data geek, I was sorely tempted to note that our whole experiment in whether striped girls can jump had been confounded from the start by the fact that I not only have EDS, but I also have ADHD. There is no way to confidently establish from my data as the “EDS” subject whether my “zebra” bounciness was truly the result of EDS fidgetiness, ADHD fidgetiness, or some combination of both. I stayed silent about that glaring experimental design flaw, though, because a) I’ve already shared more of my diagnoses with the employees of that salon than I have with some friends and b) I don’t know if that original zebra would be as willing to provide “control zebra” data at her next appointment. If she has ADHD, too, then her data would be just as contaminated as mine. If she doesn’t have ADHD, she might be as intensely uncomfortable jumping on tables as I am making small talk! I don’t have any clean data to truly support my hypothesis, but I do suspect it’s the ADHD part of me that hates small talk, not the zebra part…

I am somewhat invested in obtaining viable empirical data now, though. How do striped girls jump? Is EDS fidgetiness distinguishable from ADHD fidgetiness? Were we able to figure out what that other zebra was referring to when she said her “jumping” was a signifier of her diagnosis? I went down an embarrassingly long rabbit hole of chronic illness message boards and facebook groups searching for any discussions of “bouncing” or “jumping” onto exam tables being a hint of zebra-ness, but I found nothing. Has any other zebra ever heard of this?

And, while we’re at it, has anyone ever figured out how to make small talk? Because, if I’m honest, that bit about being flexible enough to get a foot in the mouth and a head up the ass at the same time probably applies as much to me making “small talk” as it does to clueless neurotypicals asking about my diagnoses…

 

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Procrasti-Not-Us

Working from home
Image: Brain says to heart, “Now that we work from home, self-discipline is absolutely essential.” Heart, playing video games, replies, “Speak for yourself, dork.” Link to original image here

Did you know that the term procrastination comes almost directly from the Latin procrastinatus?

This is relevant because I have a new blog page on my main site that does not have a Latin title. This pains my Partner deeply. I think it pains my Partner almost as much as typing pains the hands of someone with Ehlers-Danlos!

My Partner pointed out recently that the saga of the 9th Circle of Hell has probably become so complex that any potential new readers will have a hard time figuring out what the heck I’m talking about on a weekly basis. (The bully-in-my-brain, of course, immediately added: “even more so than they would normally have difficulty just in understanding the ramblings of someone with ADHD with pronounced hyperactivity alone.” Thanks for that, brain.) I replied that I actually take great pains to try and link at least the most proximally explanatory blog posts, so readers can catch up if they want.

He then pointed out that that effort probably costs me more in hand cramps trying to back-link enough blog posts each time I write a new one to make my story make sense to new readers – and to those of my readers with brain fog in general – than it would to just maintain a dedicated page. Because he is sensible – and my hands really could use the rest – I followed his advice.

I created a Glossary of Terms this weekend. It should contain all the key descriptions needed to understand my rather topsy-turvy life. My Partner desperately wanted me to call it the Dramatis Personae page – because Latin is awesome – but it turns out that I write a lot more about places than people, with the possible exception of him. I claim it’s because I respect the privacy of others whenever possible. It might also just be that I am socially anxious and don’t have a lot of close in-person friendships…

Either way, I couldn’t justify the Latin page title. And, the effort to create that Glossary of Terms seems to have sapped my creativity to write another blog post this week. I’ve been procrastinating long enough that I now concede that writing a blog post telling readers to read my not-a-blog-post will probably be my only post this week! But, that confession at least does allow me to honor my own and my Partner’s creative styles and kill two birds with one Latin pun title. (I hope my Partner is pleased.)

I think my brain has struggled to write another post this week because it thinks it already has written one. It turns out there are enough “Easter Eggs” in the Glossary of terms – including how I got the pseudonym Lavender, an introduction to the not-horrible therapist whom I keep claiming I will write something about someday, a new Where’s Whoopsie, and even a link to the very first piece on mental illness that I technically ever wrote – to maybe back-justify that I even truly did kind of write an original post. (The aforementioned Easter-Egg article was written on a whim for the same reason I started my blog. It technically was posted on another blog two weeks after I started my own, but I wrote it first and submitting it probably also helped inspire this blog. But, I – in true ADHD fashion – kind of forgot that it existed at all or that at one point I was open to maybe trying to guest post on other blogs eventually. Oh, well. My life is too complicated to need anymore rejection therapy right now.)

Have a look at my Glossary of Terms and hopefully learn something new about me. I’ll write a real post next week, I promise! (Though, at least on the plus side I’ve actually managed to be more productive working from home. Not having to see my bully-of-a-boss on a daily basis at least reduces the amount of time I spend frozen in panic unable to even start a project for fear of him already despising it.)

Eye Rate

Ehlers-Danlos is a systemic disorder. That clearly means it can affect any part of our body that either has collagen or relies on collagen. This is rather unfortunate, given that about 30% of the raw protein content in our bodies is made up of collagen. Collagen is in everything: our stomachs, our skin, our ligaments, our muscles, our blood vessels, and even in our hair. While I don’t think this quite means we can literally say our hair hurts, it does seem to mean we can literally tear our hair out over it. I somehow manage to both grow ridiculously thick hair and lose so much of it that my Partner claims he could build another me from what gets stuck in our drain catcher. Others lose as much as I do, but without the thickness to begin with. They get to deal with visible hair loss as a result.

Another place that collagen is found is in the eyes. My family’s genetically atrocious vision and need for prism in our glasses are quite likely manifestations of EDS. I learned this the hard way this week.

Continue reading “Eye Rate”

Behind the Back Behavior

I feel betrayed. I’ve just learned for the first time about some truly “behind the back” behavior. I don’t mean anything from the 9th Circle of Hell, workplace bullying or even America’s President being a traitor – those are all sufficiently terrifying betrayals, but they are hardly newly discovered  – but rather something that has been quietly happening for years of which I’ve just become aware. Women, we’re all being badly betrayed…

By women’s clothing.

I’ve had to wear entirely too many dresses lately. Dresses are frustrating to begin with for spoonies, because they require things like making sure your legs are shaved every day, finding flat-toed shoes that look professional and cute (I do not have the ankle stability to wear heels), the ridiculousness and expense that is “dry cleaning,” inconsistent sizing between brands that make shopping take forever and fray the last ADHD nerve, having to buy special bras to wear with oddly shaped clothing styles, and sometimes wearing the modern-day torture device known as the “thong” under them.

They also all have zippers in the back. This has never phased me, but apparently only because I’m a mutant.

I finally pursued physical therapy for Ehlers-Danlos Syndrome because it seems like, if I’m going to have to be on unpaid not-FMLA leave wearing traitorous dresses to traitorous meetings in the 9th Circle of Hell, I should also actually invest some energy into learning how not to dislocate my elbows or fall over because my ankle suddenly decides it needed to pop out orthogonally to my leg while I do so.

It took months to find a physical therapist who actually knows about EDS and who accepts my insurance. When I finally found one, the first thing he did was go through what “normal” range of motion is for most of my joints and to establish some limits beyond which I really shouldn’t be moving them to ensure my funny bone stays connected to the rest of my bones.  He will work with me throughout my not-FMLA, including designing a home program I can continue anywhere, including in the 9th Circle of Hell.

It took me until after the session to crystalize what was nagging at me about my “hyperextended” range of motion behind my back. If what I am capable of is “too much,” then how do non-mutant women ever zip up their dresses?!

I have never met a dress I couldn’t zip on my own, which is a good thing because my Partner is the first human I’ve been able to live with. I finagled my way into a single room in my sophomore year of college, and I never looked back. I am not good at having strangers in my personal living space. (Heck, it even took about four months to get used to living with my Partner.) In all that time, I have worn dresses to various functions. Now, suddenly, I’m told that the way I zip them is actually hyperextending most of my arm joints. What’s the alternative? For now, it’s asking my Partner to zip me up.

He is more than willing. (Though being a funny bonehead himself, he happily reminded me that he only has to own a handful of sports jackets, five pairs of similarly colored dress slacks, two colors of dress shoes and two suits to complete the male professional wardrobe as he agreed.) But, it made me wonder how single women without Ehlers-Danlos Syndrome handle zippers in the back of their dresses? If I’m understanding my physical therapist – and my Partner – correctly, most humans can’t zip up a zipper that extends the entire length of a dress from butt to neck on their own? I legitimately never knew this.

A brief internet search suggests this to be true. There are even devices made for single women to help them zip up their own dresses? Women, why do we stand for this? Women’s fashion is cruel and unusual punishment in so many ways, but it’s a special level of betrayal that a staple of women’s fashion for “coupley” events like weddings and first dates requires expensive contraptions for a single woman to put on. Or, that a woman could conceivably make the C-suite all by herself but still need to ask her significant other to help her get dressed for it in the morning?

There are other places that designers could put zippers. I’ve seen dresses with zippers up the side or no zippers at all. Yet, the vast majority of my dresses have had zippers straight up the back that require a range of motion that is “beyond normal” for humans. Why are women such masochists for “fashion”?  Can we all agree now that owning a twenty-piece professional wardrobe like my Partner makes much more financial and physical sense, especially for spoonie women? Can we agree to some women’s code wherein we all don’t purchase clothing that requires special equipment to put on?

I’ve been intrigued by the idea of a minimalist wardrobe for some time, but “minimalism” for women still requires being creative so that the same small number of clothing items are worn in continuously inventive ways that look like they are many more items. That takes creative commitment for which I don’t have the mental energy. Owning fewer clothing items additionally means more of that most feared task for anyone with ADHD: laundry. Laundry is the bane of the ADHD existence. I can’t quite embrace minimalism simply because of its laundry commitment. However, I am now seriously considering boycotting dresses with zippers up the back. I trust my Partner to always be there to give me a “hand up,” but I resent that some designer I’ve never met could force me into a situation wherein I have to either spend additional money or rely on others. I’m not scratching their backs with any more of my money unless they scratch my back and make their clothes fit within my new “pretending not to be a mutant” human lifestyle.

Heavy Subject Matter (Pt. 2: Physically Heavy)

Warning: heavy material ahead. No, not a content warning. (If you want that, see Pt. 1). Though, I suppose the book has some of that in its characters’ backstory. I literally mean heavy subjects ahead.

For anyone who is super adept at remembering my life:

  1. Why? It’s not that interesting?
  2. Can you please teach me how?

I need a journal to remember what happens to me on a Tuesday. Seriously, there’s a little journal in my Health Storyline app entitled “Things that Happened Today.” I need it.

But, if you do remember my life, you may remember that I was recently diagnosed with EDS. I also wrote about how challenging it is to remember what I read in books. This is unfortunate because I’m having a particularly hard time getting through Oathbringer by Brandon Sanderson. It’s a good book. It’s a good enough book, in fact, that my Partner wanted to read it, too, and he rarely reads fiction books. The fact that he also wanted to read it means that we bought it in hardback. He is weirded out by Kindle books.

We bought it the day it came out. He finished it shortly after that. I’ve been struggling since then. For anyone keeping count, the book came out almost six months ago. Partly, I’ve been struggling because of my brain fog and a need to go back and refresh on sections whenever I set it down for a bit. But, there seems to be something more. It is more than just more than mentally taxing to read that book.

Continue reading “Heavy Subject Matter (Pt. 2: Physically Heavy)”

*Press it* Some days you burn it with fire and some days…

…it burns you with fire instead!

If it isn’t one spoonie nearly burning down her office, it’s the heat from a heating pad causing a rare heat-related burn rash for another spoonie. Life is complicated enough with electric appliances + brain fog. Now there’s another concern about the use of heating pads to be aware of, sigh!

I’ll admit I am re-blogging this without independently verifying the medical information. However, Fibonacci – in addition to being a great writer and painter – is a scientist with journal access like I am. I trust her to do her homework!

via Hidden Dangers of Chronic Heating Pad Use!

Bombogenetics with a Side of Pie

Cross one random thing off my life’s bucket list. For Pi Day this year, we were gifted with a snowstorm that shut down the city for 36 hours (including leading to the cancelation of an Improv show I would otherwise have been in, boo!). The whole city – at least those in it who had office jobs – got work-from-home days on Pi Day. My partner and I both decided to make pies in honor of the occasion.

I have always wondered why other people could beat egg whites into stiff peaks, but I never could. I have gone my entire life unable to make a meringue, custard, french silk pie, or banana cream pie despite otherwise being a pretty good cook and/or baker. I have tried all the tricks I have read about over the years – chilled metal bowls, tilting the bowl and doing an undulating mixing motion with my beater and/or hand mixer for an optimal mixing motion – and I do mean everything. I once asked a chemical engineer about chemical admixtures and fluid dynamics just to determine if he could help me make a meringue. He could not, but he could make one himself. And, he assured me there really was something to the tilted bowl and optimal mixing stroke thing I had read about from the literature in general. It works for concrete as well as meringues.

Before I got an upgraded diagnosis,* I interpreted my continual meringue “failure” as just that – true failure on my part. I thought it meant I was a lousy baker because aren’t meringues kind of one of the “five mother sauces” of pies? It’s kind of disheartening when RSD shows up in the kitchen. The kitchen should be a failure-free zone, because, as my Partner says, “if you mess up, you can still eat the evidence.” But, no, I blamed myself for my meringue failures anyway. Well, it turns out it was probably an early bit of evidence – along with ankles that kept giving out during soccer leading me to be medically retired, early carpal tunnel and “double jointed” hands that made a no-nonsense Eastern European strings teacher tell me point blank that I should give it up because I couldn’t hold my bow well enough to be any good at it – that I’m hypermobile. I’m medically excused from meringues, too.

But, I’m older and wiser now and I have better kitchen equipment. I’ve learned that it’s okay to ask for accommodations if you have a chronic illness, including in the kitchen. There’s no shame in a little help. My particular unexpected accommodation for my own bomb-o-genetics came this Christmas in the form of a fancy KitchenAid stand mixer given to us by my Partner’s parents. I progressed from a lifetime of failure to, in 2018, both understanding the root cause of my prior failures and being able to make a meringue at literally the touch of a button. (I did have to make my Partner put it in the oven and take it out later. I also randomly drop things sometimes and unset meringue fillings and/or fresh-out-of-the-oven meringues are not something I want to risk dropping!)

I wasn’t a cooking failure after all: just too poor in grad school to afford a stand mixer. With that knowledge, whole worlds of homemade whipped creams, Boston cream pies, and more have opened to me! For now, though, enjoy some pictures of my first ever lemon meringue pie and custard. I also include my Partner’s apple pie as a shout-out to him. They are a little toasty on top, but that is because we didn’t realize our new oven ran to the extra-hot side of 350. I’m still willing to eat the evidence.

 

*What subtype you ask? Well, presumably just hypermobile, but ask me after the genetic test results come back. I have a side of my family that I don’t know a lot about that also raised some flags in the review, so good to rule out anything more serious with a full genetics test. Presumably hypermobile unless I say otherwise in a few weeks. Hope I don’t say otherwise for my sake! Hypermobile is supposedly the least severe subtype, as well as not having a clear genetic marker yet.