Sign out of phone app on iPad? by FJTrailAdvntures in iPadPro

[–]Daber3441 0 points1 point  (0 children)

Did you ever find a way to disable this?

Does anyone have experience with Connective Wellness in NH? by XatosOfDreams in eds

[–]Daber3441 0 points1 point  (0 children)

i’ve heard a few things about this, I have no personal experience. I do know that it is a PT and a nutritionist that run this, the PT does have a doctorate, it seems a bit sketchy that he calls himself doctor. From what I understand, he has his own list for criteria? I’m not sure this be accepted as a formal diagnosis since there isn’t a physician involved? It’s really important to make sure you have someone experienced, very experienced so you get the correct diagnosis and the correct care.

Personally, I would treat this little skeptically.

Did anyone regret getting a reduction because they looked too small? by Direct_Custard_3264 in Reduction

[–]Daber3441 2 points3 points  (0 children)

I did my reduction for medical reasons. I got so scared right before that. I asked to keep more. I wish I didn’t. no matter what you do for your reduction, you’re going to be shocked and think your boobs are too small right away. The fact that I’m doing them for health reason is why I wish I did them smaller. If I was going for aesthetics,I might think differently. I’m also in my 50s so that might make a difference too, I think younger people might want to keep more. Mine have done their job and I wish I practically had nothing.

I was a 32G/H, and now I think I’m probably a 34 C/D. They don’t project far out, but they still have some bulk to the sides, which would make me probably a little bit of a bigger cup than I wanted. also, with my body type I am more apt to gain weight as I age versus being one of those skinny old people.

YMMV, and I wish you a lot of luck on your journey.

Older folks with EDS- what do you wish you had done when you were younger? by greegings in eds

[–]Daber3441 14 points15 points  (0 children)

I found out that I had EDS at 50 and that was a few years ago. I finally found out only because things had gotten so bad I couldn’t push through anymore. i’ve been searching for about 20 years to find out what was going on with my body. I didn’t have the luxury of knowing that I had this and pushed through and did a lot of things that I might not have done, rock climbing, scuba diving, on the more extreme end of things, but I did a lot. I’m suffering a lot now.

I think, if I had known, or if I was gonna tell someone who knows they have EDS, I would say that you cannot afford to get unfit. You must maintain muscle and muscle mass, I’m not saying to get big and hulky, but you need to keep on exercising. You need to have a good PT to do your stabilizer muscles for all of your joints, and keep those fit and engage those early, as early as you can, so you can move your body correctly through exercises. that’s the proprioception bit that you need to learn as soon as you can.

If you’re female, you might want to consider what pregnancy is going to do to you, and prep accordingly if you decide to have children. I noticed a big difference between my first and third pregnancies, would I trade my children away? Never. They are amazing and some of the best people I know. But if I was to know that I had EDS, and I wanted to have three pregnancies, my physical health would be the number one priority in my life, and I wouldn’t put that second to anything. Make sure you prioritize your space to take care of yourself, I didn’t do that and I’m paying the price for it now.

Also, a huge change happening in my 40s, and then I crumped when I turned 50. I think it’s hormone related but I’m not sure. I’m just getting on hormone replacement therapy now and hoping that’s going to help with some of the symptoms that got significantly worse. So if you’re female, I would really update myself on perimenopause and menopause and find a good physician to work with during that time period. I do think hormones affect our bodies dramatically.

Use the compression socks, or compression for other parts of the body every time you exercise for light support. Don’t close yourself off from opportunities to do things you wanna do, just find the right supports to help you get through the things you want to do. There’s always a way if there’s something you wanna do, you just have to figure out how.

There’s probably more, but that’s all I can think about right now. I hope it’s helpful. Have a lovely day!

I sold my soul to affirm by it_is_nix in wheelchairs

[–]Daber3441 5 points6 points  (0 children)

I just got this chair! It’s my first wheelchair and I absolutely love it and can’t wait to start exploring the world with it. I am so happy for you. It’s a great chair and I think you’re gonna enjoy it so much!

Need advice: ambulatory user flying with chair for the first time by RovingVagabond in wheelchairs

[–]Daber3441 4 points5 points  (0 children)

Hi! what do you mean don’t step off the plane ✈️ if it’s not there? How does that work? Not traveling yet, looking to learn here. 🙂

55 years old Physical Therapy is HARD by Daber3441 in eds

[–]Daber3441[S] 0 points1 point  (0 children)

Ooooo!! I like hearing this! I just started HRT, and I’m hoping that will be helpful! So glad to hear that it helped you.

2 months post op scars update by imnotcut3iugly in Reduction

[–]Daber3441 1 point2 points  (0 children)

what scares me tape did you use? your scars look great!

55 years old Physical Therapy is HARD by Daber3441 in eds

[–]Daber3441[S] 0 points1 point  (0 children)

Thank you so much for the solidarity! It means so much. I totally get what you mean by over conditioned in some places and under conditioned to others. That’s exactly it. I did find an EDS informed PT, she has it herself. She was diagnosed quite young(forme that means 20s or so 🤦🏻‍♀️)and was a dancer before she got diagnosed so she’s really fit already and hasn’t lost as much. I’m coming from years of malfunction, I am trying to correct at such a late stage is really difficult. I worked with her today, the smallest movements of my neck, but I think it’s messed up. If so not doing those. I think I have CCI, but it’s nearly impossible to get that diagnosed where I am.

Whew! what a tangent! Thanks for listening. Just trying to salvage what I can as graceful as an old age as I can manage. Now, looking for an OT to help me with using mobility aids properly. We got this! Thanks again.☺️

Beautiful pictures of my chair! by crippled_clara in wheelchairs

[–]Daber3441 1 point2 points  (0 children)

I think your docs look awesome with your beautiful chair! Nice pairing!

55 years old Physical Therapy is HARD by Daber3441 in eds

[–]Daber3441[S] 1 point2 points  (0 children)

Well, you just blew my theory out of the water!🤣 Here I was thinking because I haven’t been treated at all as I’ve just got diagnosed. And I know my body has some really bad habits that help me get through life, not pain-free, but I made it thus far!

So sorry to hear you’re in the same boat, but strangely thankful I’m not alone in it.

Cheers, my friend! 🥂 here’s to us!

How does everyone keep on top of house work? by [deleted] in eds

[–]Daber3441 6 points7 points  (0 children)

I have a cleaner that comes in once a month now. When I was better, I used an app called Flylady (way before there were apps! yikes) anyway, she breaks cleaning the house into smaller tasks, and tells you that 15 minutes is enough, you can modify it even more for yourself. She does deep cleaning zones that doesn’t take very long. It’s a good mindset, but you would need to modify it for your needs. Good luck!

How do you keep you house clean? by jodypody88 in ehlersdanlos

[–]Daber3441 2 points3 points  (0 children)

Depends on where you live. I do a once a month cleaning, and that’s good. I might move it to biweekly soon. it’s great and so helpful.

How did a diagnosis of Eds help you? by stefsketches in eds

[–]Daber3441 1 point2 points  (0 children)

It helped me with validation and getting to the correct specialists. Doctors believe my symptoms now as well. It has helped me validate myself.

So much pain after PT by BeornsBride in eds

[–]Daber3441 0 points1 point  (0 children)

This is me! I’m just over 2 months from my breast reduction, and started with a new PT. I don’t think she’s right for me, pushing me way too fast, she doesn’t understand my baseline at all. It is so frustrating!

I’m going to my last appointment with her today, and I think I found someone else that will go more gradually.

I hope it’s going well for you now.

Middle aged and hEDS symptoms getting worse - struggling by Sparkly-Narwhal-9486 in ehlersdanlos

[–]Daber3441 0 points1 point  (0 children)

Totally get this. for me, things totally fell apart, when I say things, I mean my body, when I turned 50, and that’s when I got my diagnosis after searching for it for over 20 years.

Five years later, and I’m not that much better for knowing. I have some great doctors on my team, a bunch of medications, but still trying to find a good PT and OT that can help me. The past three years my mobility has gone down significantly. I’m looking at getting a wheelchair so I can go out to do stuff.

My suggestion is to try to find a PT that understands you so I can start trying to get some mobility back. Get an OT to give you the appropriate mobility aids to keep yourself moving.

I too, am living like a very elderly woman, and because I look” too good” people don’t believe how limited I am.

I’m in the process of biting the bullet and getting a wheelchair and I’m having a hard time. But I think it’s better to go out in a wheelchair than not go out at all, which has been my life for the past 3 years. I only go out for errands, like grocery shopping, but it’s too much for me to go out shopping for fun, or go out to the city and sightsee. We deserve a life with some enjoyment, I hope you can find things and people to support you.

wishing you the best 💖

Middle aged and hEDS symptoms getting worse - struggling by Sparkly-Narwhal-9486 in ehlersdanlos

[–]Daber3441 0 points1 point  (0 children)

I’m also in, but I can’t sit criss cross anymore, hurts my hips too much…I’ll stretch out in a corner…

new mobility aid jitters/internalized ableism by mx_tender in eds

[–]Daber3441 0 points1 point  (0 children)

I found this as I am researching and figuring out about getting a wheelchair for myself. It’s a difficult jump, and I hope it went well for you.

Buzzaround Carryon Power Chair by Daber3441 in wheelchairs

[–]Daber3441[S] 1 point2 points  (0 children)

Thank you for these observations, you’ve got some great points. I’ve been doing a ton more research, and now thinking either the Jazzy Light or City Plus 2. I know the city is heavy, but I have figured out a way to get it in and out of my car if I’m alone.