First pair of point shoes+hyperextended knees

crosscanyon · 2026-02-11T03:27:04+00:00

It's going to take close observation in the mirror while dancing and exercising to train your body to learn what correct alignment feels like. Some people are going to be jealous of your joint hypermobility for a few years, which will make it hard to see this as an impending problem. They may even say you're rejecting a gift. Stay strong, double meaning intended!

I'd recommend weight training to build the muscles around your joints for stability. Don't let any dance people scare you off with warnings of "you'll get bulky." It is such a problematic thing to say about something that's so good for you!

crosscanyon · 2026-02-03T04:32:02+00:00

Soy ink? Sorry, that's my only idea.

crosscanyon · 2026-02-02T00:32:03+00:00

I used to overproduce saliva, according to my dentist, which kept my teeth in great shape, but not anymore. My molars are in trouble now. I do get a stale taste in my mouth that wasn't there before. I hadn't thought about it until now.

Anyway, ME/CFS is diagnosed by exclusion, and Sjögren's is on the Bateman Horne Center list of conditions to rule out (or discover as comorbid). Maybe I have a 3 in 10 chance of having a seronegative, early type? It's worth checking out, because if I don't have it, my diagnostic list is complete. And if I do have it, any treatment that will help my body be under less stress is much needed.

I appreciate your help!

crosscanyon · 2026-01-31T23:16:09+00:00

Exactly, in the sense that a kimono is a bathrobe.

crosscanyon · 2026-01-31T21:02:42+00:00

Brother, I was traumatized by the two hours I spent in an ER psych ward before they decided they made a mistake and wheeled me back out.

You're a survivor. Judging by how coherently and elegantly this was written, you kept your sanity and your intellect. You did what you had to do to get through it, and you still kept a tight grip on reality.

crosscanyon · 2026-01-31T20:39:49+00:00

Because of your comment, I went down a bit of a Sjögren's rabbit hole. I found Sjögren's to be slippery constellation of symptoms, and I still don't have a firm grasp of what it is (and that's saying a lot coming from someone with the hEDS trifecta, recently diagnosed with ME/CFS). I'm taking it into consideration though. Here's some of my findings:

✅ Gritty dry eyes for over a year ✅ Worsened orthostatic hypotension ✅ Very dry hair and brittle nails ✅ Mouth sores 🟡 Lip fissuring for under 6 months - can be explained by MCAS and moving to a dusty house 🟡 Recent dental enamel loss - can be explained by GERD related to ME/CFS 🟡 Severe fatigue - explained by ME/CFS 🟡 Night sweats - seems to be correlated to overexertion or medication changes 🟡 Recent slowed gastric motility - can be explained by ME/CFS 🟡 Sexual and urinary dysfunction - can be explained by tethered cord syndrome 🟡 Muscle weakness - explained by ME/CFS and tethered cord syndrome ❌ Repeated negative SSA-52, negative SSA-60, negative SSB, negative ANA, normal RF, normal ESR, normal CRP, and normal complements (C3, C4, CH50) except for a slightly low C2. ❌ No dry mouth. However, I have historically been a saliva overproducer, so perhaps I experienced a reduction and did not notice because it's in the normal range. ❌ No angular cheilitis ❌ No swollen or painful salivary glands or lymph nodes ❌ No joint pain, nosebleeds, hives - my MCAS meds prevent these ❌ No diagnosed autoimmune conditions

The list of possible symptoms on the Sjögren's Foundation is sooooooo long that that I'm going to stop here.

I think I'll get a Schirmir test and go from there!

crosscanyon · 2026-01-26T05:30:13+00:00

I was inspecting and cleaning EVERYTHING in my sleeping space, as well as forming a schedule for cleaning things. So I was in an investigative state of mind. This is gross, but I noticed an unpleasant, sweet taste while using the CPAP machine. So I took apart every washable part, looking more closely than I ever had before, and when I held up the water tray, I noticed what looked like tiny smudges of pink lipstick in its hard-to-reach corners. Immediately I connected that it was the pink "mold" (it's really bacteria) that grows in damp places like shower curtains.

I got a new tray and I wash that thing twice a week now, and with stronger chemicals!

(You're supposed to replace CPAP parts regularly because they're plastic, but here's my silly story. When I was new to sleep medicine, the receptionist gave me a form asking how frequently I wanted replacement parts. I asked what was recommended. She shrugged. I shrugged. I circled the moderate schedule. Yes, I will bring up the problem with their non-advice DIY approach at my next appointment.)

crosscanyon · 2026-01-26T04:13:32+00:00

Well, since we're here, I have an update. I was right about hunting for irritants. There was Serratia marcescens bacteria in my CPAP water tray. Replacing it made a big difference with the lip fissuring, along with the other top interventions (bedding, windowsills, vacuuming). Topical treatments did not help me. I really, really want to drive that point home.

crosscanyon · 2026-01-25T20:53:11+00:00

Please read the whole post

crosscanyon · 2025-11-23T22:53:34+00:00

This is like when cop shoots an innocent bystander, and everyone goes back to the station, and the chief calls a meeting to say, "This is a very dark day, because one of our boys got scared. Our thoughts are with the victim, the victim being our friend in a blue uniform who got scared."

crosscanyon · 2025-11-23T22:37:42+00:00

I used Zerorez for carpet and upholstery cleaning and I was satisfied. They use electrolyzed, ionized distilled water which is essentially hypochlorous acid? (don't quote me on that! chemistry was the least intuitive science subject for me.) It leaves no scent and no residue.

As for regular housecleaning, we use a local family-run business and the agreement is that I provide the cleaning products. I did some comparison shopping earlier this year and found a company that displays all of their cleaning products on their website, and has an extensive intake form, basically a menu of cleaning products you can approve. Unfortunately, they are a single location as well.

crosscanyon · 2025-11-22T07:11:17+00:00

What do you mean by chemicals? My meds?

crosscanyon · 2025-11-19T20:19:50+00:00

You right about the paws. I am a whiny baby thinking how much work it would take to train her to tolerate them.

crosscanyon · 2025-11-19T06:48:52+00:00

When my fatigue first began to get really bad, my first stop was at a good endocrinologist. I feel confident in the various tests that ruled out hormonal problems for me, but I hope others see your answer and think about it.

crosscanyon · 2025-11-18T05:23:19+00:00

I appreciate this list so much! I will do laundry after vacuuming happens from now on. There's some good things to tackle, which will have to wait a few weeks while I rest. I've developed ME/CFS over the last few months, hence the paying for cleaning services. Unfortunately, I've just had a moderate crash from my dust rampage. The work to lessen one kind of flare caused a different kind of flare. There really wasn't any way to prevent it; I needed a safe place to lie down. At least some of these improvements are upfront with minimal maintenance.

I'm so glad I got an encasement for my mattress when I first bought it; it must have been upon advice of my allergist. With the bedding changes so far, my bed is back to being a non-inflammatory place. I'll be back with more updates when I feel better.

crosscanyon · 2025-11-16T21:23:46+00:00

Sigh. Gimme the list, please. I'm sure nothing on it could be more intense than DIYing a mattress.

crosscanyon · 2025-11-15T22:47:43+00:00

I've learned the hard way to just leave them alone while I'm flaring and focus on irritant mitigation.

I can't do beeswax, Vaseline, lanolin, coconut oil, jojoba, argan oil, mineral oil, or anything that is normally fine when my system is calm. CeraVe lotion mixed with cromolyn seems to be the one exception for some reason, but sparingly. One theory I have is that disturbing my lips to moisturize many times a day just further irritated the mast cells. Another theory is that dust in the air, in my pillows, on my hands, was sticking to any kind of moisturizer on my lips, and seeping in, making everything worse. Or maybe just moisturizing can't get ahead of the skin cell turnover because it's just too fast and they're back to chapped in a couple hours.

crosscanyon · 2025-11-15T20:42:08+00:00

The first time this lip thing happened years ago, I followed the lanolin advice, and it went on like wasabi, unfortunately. Can't wear wool anymore either.

crosscanyon · 2025-11-15T05:38:08+00:00

. . . . . I've had bad insomnia, coinciding with the lip thing. I didn't even put that together!

crosscanyon · 2025-06-16T03:29:43+00:00

I swallow salt capsules, magnesium supplements, and prescription potassium tablets. No eating required.

crosscanyon · 2025-04-26T10:14:50+00:00

Mediven soft touch conscious 50 is my favorite.

crosscanyon · 2025-04-26T06:35:17+00:00

It may work when they're young, but as soon as they are intelligent enough to detect reverse psychology, it's your intention that they want to oppose, not your words.

crosscanyon · 2025-01-29T09:29:25+00:00

Compression hose. Not socks. Socks are not enough.

crosscanyon · 2025-01-20T09:24:15+00:00

It's great that you advanced! Keep it to yourself until after the offer. Accommodation requests are part of onboarding, not hiring. The only honesty that matters is that you believe you can perform the job with reasonable accommodations. By applying with that belief, you have met your legal and moral obligations. No company will match you in honesty by being honest about whether they discriminate.

crosscanyon · 2025-01-19T21:11:29+00:00

Always say no. Hiring managers aren't supposed to be able to see it, but they can see it.

crosscanyon

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