October is over and I didn’t even have time to draw any pumpkin typography
When I was in 4th grade, my teacher Mrs Barnacle (yes, her real name, and yes, it was in a seaside town), amongst other useful skills, taught us that you when you wrote out the date any day in October, you must make the capital “O” into a pumpkin. I have faithfully continued this hallowed tradition ever since. But somehow, the entire month passed this year without me writing out the date a single time. I don’t know how this happened.
Well, perhaps I do, a bit. Starting the last weekend in September it was high season for Keep Salem Odd, my “superstore for the eccentric” little business, and every weekend plus some other days, I was in downtown Salem, setting up my stripey 10x10 tent and selling cheeky, spooky-tangential stuff to tourists all day. Wm says I was running on adrenaline, which may well be true. Because I didn’t *really* have that kind of energy or stamina. But I did it anyway. Welcome back to the world!
Not that it was a bad thing. It was a good thing. Despite it being hard, I actually really like my crazy Octobers selling gewgaws en plein air. It’s invigorating, in its way. And compared to the rest of the year with Keep Salem Odd’s current business model, it’s very lucrative.
The first couple weeks I was still very much in recovering from chemo and radiation mode… exhausted, basically. Luckily, I had time to rest on weekdays when I wasn’t working on making things or other admin. The last bunch of market days I came down with what seemed like a cold, but I think it’s actually not, rather an immune system thing with symptoms like a cold, but I have to talk to my allergist and get back to you on that one. Or not. Do you ongoingly really want to hear about all my health blah blah blah? I mean cancer updates are one thing but…
Apparently GenX are the generation of ellipses… I’m so on board with that.
And apparently this is misinterpreted by the younger generations. But they have weird hangups with punctuation and secret meanings. I live in fear that I’m going to unknowingly use an emoji that means something horribly untoward in some professional-esque context someday. Luckily, I rarely use emojis. Much more likely to append an :) or :(. Also a GenX thing, I expect. Since we grew up in a text-only world. Thank the heavens.
But getting back to the topic of health, the official cancer update is that there really isn’t an update until December. I met with both my radiation oncologist and hematological oncologist (the chemo doc) recently and they both said I seem to be good. But this was based on just a chat and some bloodwork. (I am anemic, but apparently iron deficiency is a good sign because it means the radiation and drugs killing “bad” cells are also zapping iron, which means they are working). (But it would explain some of the exhaustion.) (Also, it’s very Victorian and deserves a fainting couch). It will be December when I get a PET scan which can actually visualize cancer cells and the tumor and such like. So, nothing terribly official till then. Though, anecdotally, I do feel better today than I did a month ago, so there’s that.
Wanna hear more health stuff? Unrelated to cancer? I would think no, but then I realize that while I was trying to rest and occupy myself with nothing taxing to the brain, I watched a stupid number of medical-mystery-type videos on YouTube. Voyeurism. I mean, scientific curiosity! “This Farmer Excised His Own Melanoma, What Happened Next?”, “This Teen Rubbed a Whole Tube of BenGay between His Legs, What Happened Next?”, “This TikToker Ate Entire Gallon of Pickles in One Sitting, What Happened to Her Brain?”. Yeah. nothing that exciting, though the pickles looked really good.
Anyway, you may or not know that I have Ehlers-Danlos Syndrome. Actually, you probably don’t know that, since I’ve only told about 5 people, one of whom was my bookkeeper, who also has it. Now, if you’ve heard of EDS, it’s probably because it’s become a TikTok trend (I guess). It seems it’s a fashionable diagnosis. I’d say that’s kooky and makes no sense, but I do kind of understand where it comes from. First, watching medical stuff on social media, is, as aforementioned, kind of a sick fascination. Voyeurism, glad-its-not-me-ism, human interest, whatever. And add the addicting nature of videos in social media format, especially TikTok, and I can see going down all kind of hypochondriacal rabbit holes, self-diagnosing as a hobby. Or an outlet of anxiety or provoker of anxiety. And the thing with EDS is, it has a LOT of possible symptoms, some of which are very common. It also has a readily google-able set of clinical diagnostic criteria which are fairly easy to find loopholes in, if you’re not actually a trained clinician and/or are going at it trying to find yourself a condition to make you special or to get attention, or whatever the psychological motivation is in this context.
But I’ve had it since before it was cool, and I actually really have it. I mean, unfortunately, since it sucks. Without going into too much detail, EDS is actually a group of closely related hereditary connective tissue disorders. There are, I think, 13 variants, each of which is known to stem from specific genetic mutations, except for the most common version, for which the gene or genes have not yet been identified — this exacerbates the diagnostic kerfuffle. Here is an incomplete list of symptoms from Weill Cornell:
Abnormal wound healing
Arthritis
Back pain and degenerative disc disease
Cardiovascular abnormalities
Chronic fatigue
Congenital clubfoot
Cervicocranial instability
Double-jointedness
Easy scarring and poor wound healing
Fragile arteries, prone to rupture
Frequent injuries (related to unstable joints)
Increased joint mobility, joints popping
Joint dislocation
Joint hypermobility that leads to frequent dislocations and partial dislocations
Joint pain (“arthralgia”)
Migraines
Muscle pain (“myalgia”)
Musculoskeletal pain that is chronic and debilitating
Neurologic deficits (“myelopathy”)
Numbness
Osteopenia (low bone density)
Pins-and-needles feeling
Spondylosis (degeneration in spine)
Unusual skin: very soft and velvety; fragile, bruises easily; stretchy (“hyperelastic”)
Vision problems: sclera (the white of the eye) fragility, unusually small corneas
Of course, not everyone has all of these, but it gives you an idea. A pretty common thing, and what seems to affect me the most, is that you’re extra stretchy (hypermobile) — like my fingers, knees, and elbows bend backwards and various other freakishnesses. Though this seems kind of cool, as you age it becomes a liability, in that your stretchy ligaments don’t hold your bones in place that well, and they can come out of their joints fully or partially quite easily. Because of this, your muscles go crazy adapting and trying to hold them in by living in a state of constant contraction, or spasm. And this freakin’ hurts.
I’ve been dealing with this and a lot of the other symptoms, since I was a kid — though it’s gotten a lot worse since sometime in my 40s. Unfortunately, like many other people who legitimately have EDS, I spent years going to a zillion different doctors and being told I did not have a problem, or that it was anxiety, or that it was in my head. Because they couldn’t see anything on a conventional X-Ray.
Also because, with the way healthcare is structured, they can’t look at more than one part at a time. For example, I have had pretty severe tendinitis in my achilles tendons off and on for decades. I would go to an orthopedist who specialized in ankles and say, “Both of my achilles tendons are killing me, I can barely walk. But I think it’s part of a larger problem. I habitually stand with my knees hyperextended and my hips hurt a lot, and I think I partially dislocated one at one point. My back also hurts, and my shoulders, so maybe it’s postural?”
And, inevitably they’d respond, “It’s unusual and unlikely to injure both achilles tendons at once. And I can’t really talk to you about your hips or knees or back, I’m an ankle doctor. Let’s X-ray your ankles. Oh, they’re fine, go to PT.”
And then I’d go to PT and it wouldn’t help because they were treating me like a person with normal collagen (connective tissue). I think I went to PT, literally a dozen or more times with different practitioners for different (and the same) “injuries” over the past 20 years. Hips, wrists, elbows, shoulders, achilles, hands. Never mind the ones I went to when I was younger who told me to just stand up straight and would fix my TMJ. Hmf.
I’ve also been to a physiatrist who “broke up” some of my achilles tendon knots with an ultrasound-guided large needle (didn’t help) and a pain doctor who gave me various shots in the butt and back (didn’t help) and was convinced I was lying that it didn’t help because “it always helps”. A few chiropractors, half-dozen orthopedists, I don’t even remember who else at this point.
So, as you might imagine, when my GP finally said, “OMG, I think you have a connective tissue disorder!”, instead of sending me to another PT, it was a revelation. I always thought I was just a particularly broken and injury-prone person who was weirdly strong in some muscles and weirdly weak in others and had an oddly wide range of motion in some joints. Once she informed me that such a thing even existed, I read about it for about a year, feeling like I finally had an answer, and then I finally saw a specialist geneticist who diagnosed me.
Problem is, it’s chronic and there’s no “cure” and not much treatment. (But I’m also super lucky, that despite my whinging, I actually have a relatively mild case, and do not have one of the really bad genetic mutations that makes your heart collapse, etc.). The gold standard, such as it is, for feeling better is, you guessed it, PT! But there’s a very particular protocol that apparently helps EDS people, and it’s quite different than the usual techniques. So I’m pursuing that. And compression sox. And Tylenol.
Maybe this is super boring to read about. Sorry. I think it’s interesting not so much in a poor me, my everything hurts kinda way (though it does), but as a glimpse into how our medical system can really fail and how it could do a lot better. An outcry for holistic care. I know doctors operate on protocols and checklists and this is good. But what if they don’t know about the protocol for a condition because it is rare or has been described only since they finished med school? EDS was considered very rare until recently, because it was not well-known and likely seriously under-diagnosed as a result. (And, if you’re being cynical, because it presents more in women and historically doctors like to brush off women’s pain as psychosomatic, etc. etc.) Dr Ehlers and Dr Danlos were talking about it 1901 and 1908, respectively, and PubMed tells me that Hippocrates described it in 400 BC, so not new. Some doctors are definitely starting to cotton on, maybe we have TikTok to thank (jk).
OK, I still feel weird talking about my health on the internet.
Have you heard the new Cure record? It had me almost in tears walking around listening on my walkman (iPhone) today. Go the Cure! They’re so wholesome. I’m such an elder goth.
I’m giving a first listen to the new The Sheila Divine record right now. I didn’t even know this was coming out. It’s pretty different than past records — maybe this is part of Aaron channeling all his creative output into this band instead of having various side projects. I like it so far.
Still prodding along with “background” reading for my book research (it’s about the independent business community in Salem MA). I won’t say I’ve gone down a rabbit hole exactly, but I’ve been reading a lot of macroeconomics books and am finding them weirdly fascinating. I mean, weird, as in unexpected for me to be enjoying. Economics is such an amalgam of the social, philosophical, mathematical, and political — very interesting lens onto many topics.
It’s time for me to start planning and doing interviews with local business owners though and getting into the micro, hyper-local level. Beyond the consistent level of extroversion required on my part, the trick will be to keep this interviewing process (and what businesses to include) drama-free. Like all small communities, this one can get cliquey, but I refuse to encourage or promulgate that. I hate drama-gossip-bs. It may take some magnanimity to defuse though, I suspect. I want to say “a rising tide lifts all boats” and for it to mean that we do better helping each other than bickering or casting aspersions — but I just learned the other day that that phrase has a rather different meaning in economics, one that I do not intend. But I do like ship metaphors, nonetheless.
Oh yeah, and it’s Election Day. But it’s only 3:15pm, so there’s nothing to say about that yet. Besides, what is there to say at this point. Hope you’re doing ok and not so full of anxiety that you’re looking for new diseases to have on TikTok. Hot tea helps.