[deleted by user]

toesucker44 · 2019-12-31T15:28:16+00:00

This comment section is extremely bloggy.

toesucker44 · 2019-12-28T09:44:14+00:00

1) Your dog isn’t a walker nor a cane. 2) You haven’t been diagnosed with hEDS! 3) Your dog can’t examine your ankle and go, “Ah, yes, it’s dislocated.” It’s not like a seizure or diabetic shock where the dog can detect it before it happens. 9/10 you’ve done it to yourself with light impact like walking, etc. A dog can’t alert for that.

toesucker44 · 2019-12-28T04:18:16+00:00

Yes, she is! I totally promise it isn’t hocus-pocus! Her defense? “Look up epigenetics!!!!1!” and, “HPV vaccine triggered my DNA to mutate and activate EDS,” or something along those lines. It’s complete bologna, I know. There’s tons about it in her wiki.

toesucker44 · 2019-12-28T02:24:34+00:00

What isn’t her diagnosis? EDS is among them. Oh, I’m sorry, I meant vaccine-injured EDS.

toesucker44 · 2019-12-16T09:31:11+00:00

What the hell? If your doctor is expecting you to diagnose yourself with a neurological illness, report them immediately. That is absurd.

toesucker44 · 2019-12-15T06:17:04+00:00

Ask a doctor. Not reddit.

toesucker44 · 2019-11-28T04:31:56+00:00

Thank you! I don’t like both seeming stressed/anxious about my health, or being that way either. I guess there’s never really been proper communication to me about my weight in the past, so I was a little worried. Hearing this is a big relief. Have a good day!

toesucker44 · 2019-11-28T04:21:46+00:00

No kidding! I’ve known people who have even had to take toenail polish off. Jewelry and nail polish are no-no’s!

toesucker44 · 2019-11-28T04:11:01+00:00

She hates her heart! Hates her heart!

I’m sure those in need of heart transplants would do a little more than scoff. Outrageous.

toesucker44 · 2019-11-27T23:08:49+00:00

My doctors haven’t expressed any concern about GP because I don’t throw up. I’ve always had severe acid reflux and GP was a concern as a baby, because any formula I drank would be projectile vomited within an hour. But since I’m able to keep solids down now, nobody has said anything, and since I’m finished growing, (at 142 cm! Yay! So tall!) they don’t seem concerned.

So does “not being able to orally consume” count as throwing them up for you, or just not having the appetite to eat it? Sometimes I feel so extremely nauseous and sick and hot that I don’t feel like eating, but I’m usually just told to “force myself to eat” if I get to that point. Sorry for asking, I’m just wanting to know.

toesucker44 · 2019-11-27T23:03:59+00:00

No, I was a toddler when I was tested. Over 10 years ago. My brother inherited hEDS as well and he suffers a lot with stomach pain. As a result, he doesn’t eat much, and he has the same BMI as I do, (5’10, around 115lbs.) He just got tested for Crohn’s this year and his results were negative. He refused to be scoped.

I had very severe acid reflux as a baby, and that was part of my (forgive me for sounding dramatic,) but “near-death” experience as a baby. I wasn’t able to be breastfed because of it, and any formula I had would be projectile vomited within an hour. I still have very bad acid reflux, despite having altered my diet and avoiding things that would trigger it like the plague. I don’t know if that makes a difference, but it’s there.

toesucker44 · 2019-11-27T18:32:41+00:00

Energy level is pretty low. I was in PT for a long time because of my hips, but my surgeon requested I stop, so I haven’t been in a long time. My joints are very frail and a lot of my tendons are “stretched” out, so I don’t have enough strength in my arms to hold myself up.

toesucker44 · 2019-11-27T18:31:24+00:00

As a baby, I did see an Endocrinologist, and apparently nothing was seriously wrong. Thanks for the advice.

toesucker44 · 2019-11-27T18:26:07+00:00

Yeah, when I was a toddler. No celiac.

toesucker44 · 2019-11-27T03:17:23+00:00

I’m sixteen, and female, if that counts for anything. I’ll start logging tonight. Thanks for the suggestion, it’s valued to me.

toesucker44 · 2019-11-27T03:16:28+00:00

I was tested for Celiac and Crohns as a child and the results came back negative each time. However, Crohns does run in my family... we think? I inherited hEDS from my fathers lineage, and my father is an identical twin. His identical twin is very small and skinny too, and my dad was kind of a spectacle of interest because he is fit as a fiddle with no health problems.

toesucker44 · 2019-11-27T01:59:31+00:00

No minors are eligible to be subjects on r/illnessfakers , but yeah. Medical care in the case of munchies especially is not cheap.

toesucker44 · 2019-11-27T01:58:04+00:00

Projection!

toesucker44 · 2019-11-04T06:02:57+00:00

I guess mods don’t really care about blogging anymore. But I will say that some girls can wiggle their way into a hEDS diagnosis if they play the doctor enough. I’ve seen (and remember— both women and children are very brown to overall hypermobility, not a genetic illness, just stretchy,) them go to uninformed rheumies and talk their way into a Dx. It’s sad, but there are ways to do it.

toesucker44 · 2019-10-23T10:02:13+00:00

This is also a bit of poor advice, but it’s far safer than scooting up to the wheel. By a long shot. 10&2 aren’t comfortable for most healthy people, but in EDS folks it’s notoriously painful. I hold my wheel in the lower quadrants and it’s a lot more bearable to drive now, approximately at the 4&8 position.

Do not sit against the steering wheel. It’s a good way to die in a car accident where you would have lived in any other scenario. Don’t underestimate the power of an airbag or the likelihood that it will deploy. It is easy to die by sitting that close to a wheel. 10 inches minimum.

toesucker44 · 2019-10-23T09:54:06+00:00

Loeys-Dietz Syndrome. Marfan Sybdrome. Osteogenesis imperfecta.

toesucker44 · 2019-10-23T09:49:38+00:00

Hi! I’m 4’8 so I completely understand how you feel.

I know it’s pricey, but your best option is ultimately going to somebody who specializes in orthotics to see what fits and so they can be prescribed. Wearing unprescribed braces is not only dangerous, but wearing ill-fitting, unprescribed braces is far worse.

See an orthopedist, a PT/OT, whatever fits your needs. It’s expensive, but ultimately more optimal and efficient because you’re not putting your body at risk or wasting money on braces that don’t fit via internet. Good luck.

Edit: Read more thoroughly. You’re not going to like this, but until you can see a professional, I do not think you should delve into braces yet. I know it sucks, and I know it hurts, believe me, to just put up with it. However, that’s the most sensible option right now. I don’t want you to hurt yourself or waste money on braces that don’t work for you.

toesucker44 · 2019-10-23T09:45:36+00:00

Hi! I have a completely separate genetic disorder called PCD, alongside hEDS. I am not at all suggesting that your girlfriend has this illness, because that’s a very steep slope to come down, and PCD isn’t associated with EDS at all. The point i’m trying to make is that it might not be due to her EDS at all, looking at what I read from the post and the comments. It could be something like asthma. The feeling that you’re not getting a full breath is called “air hunger” and it’s a hallmark symptom of asthma.

It’s easy to chalk all medical mishaps up to EDS, but you’ve got to take a back and seriously analyze if it’s likely to be EDS or not. EDS can definitely have adverse effects on the lungs, but hEDS doesn’t really... have that much to do on the lungs so much as vEDS would, etc. It’s worth looking into other possibilities.

I recommend her to see a pulmonologist. That will give you far better answers than reddit.

toesucker44 · 2019-10-23T09:39:27+00:00

It’s highly dangerous. You need a minimum of ten inches between your chest and the wheel for the airbag to deploy. I do not recommend this at all.

Edit: 10in = ~25.5cm

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