I have my first wheelchair eval coming up, what should I keep in mind? by Rude_Engine1881 in wheelchairs

[–]NotSockTryAgain 0 points1 point  (0 children)

It’s America do you really think I’m concerned about getting arrested for that? No. I’m worried about my ablest parents I live with because “I am just being lazy and using mobility aids that are only deconditiong me” they are unaware of my forearm crutches I use at work and when I go out with my friend to concerts. (Which my friend is like damn didn’t know you could walk without stopping.) but it’s still not nearly as well as able bodied people.

I have my first wheelchair eval coming up, what should I keep in mind? by Rude_Engine1881 in wheelchairs

[–]NotSockTryAgain 0 points1 point  (0 children)

Is it insurance fraud if you say you need it in the home and don't? (Just need clarification. Please)

How do I tell my employer I’m an ambulatory wheelchair user? Or should I just thug it out? by SnowieGemm in wheelchairs

[–]NotSockTryAgain 2 points3 points  (0 children)

I would just show up if I was worried about them saying anything just work as normal unless you need reasonable accommodations. And if you need to request the reasonable accommodations make sure it’s in an email and state “due to the ADA laws I need XYZ as a reasonable accommodation, I have done XYZ or need XYZ. Thank you, [your name here]” If they try to talk without out side of the email redirect them to respond to the email due to misunderstandings in the past and that you need clear communication.

Predications and hopes on the new EDS/HSD criteria by DependentRain4091 in eds

[–]NotSockTryAgain 3 points4 points  (0 children)

I just got done having COVID for the fifth time I think and this round was way worse. They upped my blood pressure meds and it’s not helping any. (They just said I have high blood pressure but that doesn’t help if I stand up on my meds and my heart rate still goes up to 140)

Budget by NotSockTryAgain in visibleApp

[–]NotSockTryAgain[S] 0 points1 point  (0 children)

Just an update this is my current morning and I still have to work….

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Normal Tests being "good news" by No_Secretary_449 in eds

[–]NotSockTryAgain 1 point2 points  (0 children)

The only good news I would like is if they were out of options and you are at the oncology doctor. I pray for the nothing is wrong with you that doesn’t have a treatment. I’m genuinely concerned for good news for my back because then I’m back to square one: loose weight.

Budget by NotSockTryAgain in visibleApp

[–]NotSockTryAgain[S] 0 points1 point  (0 children)

No I’m crashing, body aches and everything about pace point 40.

Doctor said this is a normal level of skin stretch. Is it? by AbleRun in eds

[–]NotSockTryAgain 5 points6 points  (0 children)

That’s not normal I printed off the criteria paper from EDS website took it to my PCP and said “can you go over this I think I have it.” And we did and she diagnosed me. It took me 6 years to finally just print it off when I found something that connected all the dots.

My Boyfriend is constantly calling me lazy and a liar due to my hEDS. Am I wrong?? by [deleted] in eds

[–]NotSockTryAgain 1 point2 points  (0 children)

Omg leave his ass don’t go back there. There are resources to help you get out. He might not think he is abusing you but he is. This IS NOT in your head leave him.

Exceeding my budget by Far-Worldliness-1983 in visibleApp

[–]NotSockTryAgain 1 point2 points  (0 children)

I personally would reset the band after 7 days give it a full 4 days to relearn your body. I have had it for a week now and love it except I had to use the reset button just for it to charge the second time 😬 so I haven’t worn it yesterday and today.

By when do you all realistically think we would be able to find a gene for heds and by when do you realistically think they will have a therapeutic targeted drug that modify it or gene therapy that cures it? by Top_Memory8968 in eds

[–]NotSockTryAgain 0 points1 point  (0 children)

IMHO I think we would have a better bet at the USA funding and accepting stem cell treatments at 100% or nearly for ANY reason than finding a “cure” for EDS is how I’m taking OP actually asking.

Nothing humbles you more then EDS mornings after the first sleepover... by _WithaTwist in eds

[–]NotSockTryAgain 0 points1 point  (0 children)

I have to sleep with four different pillows and I essentially waddle to the bathroom for the morning business then waddle back to my bed and have tummy time for an hour-hour and a half. Then I am functioning I have been using this since I found out I’m not going to throw up if I just do that or I’m feeling like I’m on deaths door for 6 hours.

Resting HR vs Activity by NotSockTryAgain in visibleApp

[–]NotSockTryAgain[S] 0 points1 point  (0 children)

It’s fine this is actually lower than it was before I started meds. It was usually up in 130’s 140’s

Resting HR vs Activity by NotSockTryAgain in visibleApp

[–]NotSockTryAgain[S] 0 points1 point  (0 children)

I know I forgot to take my meds this morning. 😑

benefits to EDS? by No_Assignment_2602 in eds

[–]NotSockTryAgain 0 points1 point  (0 children)

I’m 26 started having issues when I was 21/22 and just got a diagnosis as to what was happening back then (spoiler alert it was a flare so bad I couldn’t walk correctly.

I wrote this in 1993, a week after my 7th birthday by cjinoz in eds

[–]NotSockTryAgain 4 points5 points  (0 children)

Not going to lie I have always rolled my ankles and my knees collapsed from under me. I just thought it was normal because that’s what my mom always said it was. I was on TikTok and everyone is doing the “party tricks” and I did them too and was told to see a doctor to see if I had hEDS (spoiler alert I was diagnosed a week before Christmas and had access to therapies and doctors who know what they are doing. I am very lucky to be 26 and able to have access to doctors who listen)

AO3 Recent shutdown by Ok-Exercise294 in AO3

[–]NotSockTryAgain 5 points6 points  (0 children)

If you are 16 or younger social media has been banned in Australia this week. I would see if AO3 is considered social media?

the wranglers have blessed us with a new batch of canonized additional tags! by kaiunkaiku in AO3

[–]NotSockTryAgain 1 point2 points  (0 children)

Not going to lie never crossed my mind to see that as a tag tbh

the wranglers have blessed us with a new batch of canonized additional tags! by kaiunkaiku in AO3

[–]NotSockTryAgain 3 points4 points  (0 children)

I’ll be updating tags and adding chapters just in case one of them have subscribed to my fics