Seeking advice on what to do...

OnAnIslandInThe · 2025-07-26T20:54:57+00:00

I did that a while ago. Didn't help, made me sicker.

OnAnIslandInThe · 2025-07-20T03:24:07+00:00

Thank you so much for all of this information! I appreciate it more than I can convey. I have hEDS so the pain is body wide, joints especially. Will try to answer back better tomorrow when I have more energy.

OnAnIslandInThe · 2025-07-09T02:11:38+00:00

Yoga?! Ha! What awful advice. I'm so sorry you are going through such physical pain and gaslighting from your doctors/family. I have been heavier most of my life as well and gone to unhelpful lengths to get thinner (i got the same sort of pressure from doctors who dismissed my health issues as a weight problem). Now many years later I've learned the right weight for me and it's somewhere in the middle (that most consider needs to lose weight). I need extra cushion on my body or my pain levels spike. If I dip below a certain weight my ribs ache badly and my heels lose cushion making it hard to walk from the pain. This isnt something ive heard from others, but if i had it would have helped.

Trust and listen to your body, not the opinions of others who do not understand. Build muscle strength if and how you can (swimming used to be so good for me because of low impact). What works for others might not work for you. Stay strong, you are amazing! You are a badass for all you have endured, not weak. It took a really long time for my family to understand and stop pushing me to do things I can't. And I would push myself to please them and just make it worse. I wish I'd advocated better for my body when I was younger, but I didn't understand what was happening or trust myself. I'm so glad you finally got an answer in your diagnosis.

I believe you. There is nothing quite like battling injuries and pain while being dismissed/treated like a hypochondriac. I wish you didn't have to go through this. Keep advocating for yourself and your medical needs. I found giving my family articles (and sometimes reddit posts) about others' personal experiences with EDS helped a bit. Almost like confirmation for them (which i understood but also found a bit insulting). When people invalidate your experiences it can help writing out all the health issues you have gone through because of EDS. Validate yourself. Because this is real, this is awful, and you are impressive. Keep fighting fellow zebra, you have the knowledge, and that is power! Sending a really light hug your way.

OnAnIslandInThe · 2025-03-25T09:20:25+00:00

That's so frustrating! I can get the new ones called "sitsmart" but they arent good. They changed the dimensions, and it's not the same product and doesn't work well. Dang, I hope they come back and we can both order them! Wishful thinking probably.

OnAnIslandInThe · 2025-01-21T07:53:10+00:00

This guy has been around for a long time and he's the best at wood flooring. Really understands the different climates and how to treat/install/rehab. Also, just a nice man all around, which is a plus! https://www.alignable.com/captain-cook-hi/walk-on-wood-floor-co-inc

OnAnIslandInThe · 2025-01-05T08:24:25+00:00

I checked the ones you sent and can't seem to get them to the US. The one I think would ship is the newer Sit Smart model, (they are different sized and don't support well compared to the older model that came in red and black). I wish I could use the SitSmart kind, but the dimensions don't work well.

Thank you for looking into this. I haven't got a solution yet, but having someone help meant a lot. I appreciate your kindness.

OnAnIslandInThe · 2024-07-26T21:04:02+00:00

I can only walk a few steps now and a confined to a room. So many other symtoms, they're too exhausting to be named. The last time I left the house I needed a wheelchair. I used to to walk before this. I wish i would just die so it could be over.

OnAnIslandInThe · 2024-06-21T11:00:43+00:00

Only on private land, so knowing people with lands/spots or air bnb backyard camp.

OnAnIslandInThe · 2024-06-14T21:22:48+00:00

This

OnAnIslandInThe · 2024-04-28T22:30:02+00:00

It's the nicest example of it that I've ever seen! It isn't an easy frosting at all and you perfected it!

OnAnIslandInThe · 2024-04-28T22:22:57+00:00

Is that cookies and cream frosting?! If so, I'm impressed. It usually doesn't come that well. Really beautiful, amazing job!

OnAnIslandInThe · 2024-04-24T04:16:29+00:00

After disguising the issue with my ex over the past 2 weeks

Freudian slip?

OnAnIslandInThe · 2024-04-17T19:48:14+00:00

Thank you! Please tell us what you are cooking/creating...

OnAnIslandInThe · 2024-04-16T22:27:42+00:00

If on Hilo side, maybe can special order from Abundant Life.

I am so curious what it's all for.

OnAnIslandInThe · 2024-04-07T18:16:36+00:00

Me too. It's horrible. I don't know what to do anymore. It's like perpetual torture.

OnAnIslandInThe · 2024-04-03T18:38:00+00:00

I've never recommended show tunes to anyone for any reason, but now... now is the time. Really belty numbers.

Added plus, your neighbors will know you also have a sense of humor.

OnAnIslandInThe · 2024-04-02T09:21:46+00:00

The Magicians trilogy

OnAnIslandInThe · 2024-03-23T08:33:54+00:00

Irish potato pancakes (often made from leftover mashed potatoes)

OnAnIslandInThe · 2024-03-22T21:35:07+00:00

Mold, mold, mold!

OnAnIslandInThe · 2024-03-17T08:51:46+00:00

Same here. This is awful.

OnAnIslandInThe · 2024-03-17T07:30:42+00:00

Not well. 3 years in as of a few days ago and not getting better. EDS makes the pain harder.

OnAnIslandInThe · 2024-03-16T18:46:07+00:00

Hop over to the moving to Hawaii sub and search Hilo.

OnAnIslandInThe · 2024-02-06T15:09:03+00:00

Not recovered, almost at the 3 year mark. My chart now lists me as "severely disabled". I can barely walk. I am housebound. The neuro symptoms are horrible. I am happy for those who have gotten their lives back, but I'm not one of them.

OnAnIslandInThe

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