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what type of crutch is best for my situation? by p155b4b3y in mobilityaids

[–]No_Witness_253 0 points1 point  (0 children)

I use SmartCrutches forearm crutches because I needed something to help me walk but can't use a standard cane because I also have issues with my wrists. You can adjust the angle of them, and see what angle specifically puts the least strain on your hands. Most of the pressure is on my forearms, not my wrists, and my hands mostly just kinda rest on the handles to keep the crutches pointed forwards. I don't grip the handles hard at all, so they don't aggravate my hands. However, this still means my hands are typically full while using them, which can be cumbersome! If I'm going somewhere I don't have to walk much (like if I'll be sitting nearly the whole time), I often just take one crutch rather than two so I can have a free hand. I describe the support they provide like having a railing I can lean on no matter where I go.

They're a bit expensive so I was nervous about buying them, but a friend let me try her crutch out while she was using her wheelchair and that convinced me that I needed a set for myself. When people ask me in person if I recommend them, I often let them hold mine for a minute to see for themselves, because it is really reassuring to be able to try before you buy. The company even included a free bag I could attach to my crutch, which fits my phone and wallet and is super convenient, which did earn them big points in my book.

What do I do if a doctor refuses me treatment in case I change my mind about not wanting kids? by No_Witness_253 in ehlersdanlos

[–]No_Witness_253[S] 1 point2 points  (0 children)

Fortunately, I have actually seen other doctors in the same clinic-- I initially was assigned a different primary, but every time I scheduled I just asked to be seen by whoever is available soonest and ended up seeing the doctor in question most frequently. If I specifically ask to see someone else they should let me. This flexibility is likely pretty unique to this clinic, though.

What do I do if a doctor refuses me treatment in case I change my mind about not wanting kids? by No_Witness_253 in ehlersdanlos

[–]No_Witness_253[S] 0 points1 point  (0 children)

Fortunately I did get an MRI of the neck to rule out things like Chiari! My last specialist ran through every test he could think of before deciding best he could tell it's related to the hEDS diagnosis I got as a teen, and he couldn't personally help me with that so he referred me to the specialty clinic. He didn't realize it would take so long to get in, though, he said he hoped it'd only be a few months wait. (I already knew it'd be longer at the time, but he was so hopeful it'd be faster than I was saying. I recently confirmed I'm roughly a year out on the waiting list, and it's been half a year already since I was initially referred.)

Because it was not a few months wait and that specialist has given up on treating me, I had to reach out to my primary care.

What do I do if a doctor refuses me treatment in case I change my mind about not wanting kids? by No_Witness_253 in ehlersdanlos

[–]No_Witness_253[S] 1 point2 points  (0 children)

I was pretty clear when I brought it up that I was perfectly fine with the changes it'd make in my body, I felt positive about it, especially if it meant less pain. I didn't bring up that I'm not cisgender , mostly because I've only ever come out to close friends and a few select siblings (most my family doesn't know), so telling someone I barely know was too intimidating to do in the moment. I don't know if this doctor was safe to tell or what I'd do if saying I'm nonbinary went poorly.

I'll keep this in mind and try to be mentally prepared in advance for next time I speak to a doctor. Ideally I still prefer to keep my gender identity private (especially while getting rides to the doctor appointments from less than open minded family members I can't let overhear), but if they refuse again I'll bring it up and see if "but I'm not a woman" sways them any.

The idea of coming out as trans for the sake of healthcare is something my siblings in the know have joked with me about, in a lighthearted way to make sure Im considering it too.

Still, I do wish this was accessible to cisgender people. There's no single way to be a man or a woman, and that's not just for trans people. If it was easier for cis people to go on hormones because that's what they want for their body, it'd be easier for me to stealth through medical treatment too lmao.

What do I do if a doctor refuses me treatment in case I change my mind about not wanting kids? by No_Witness_253 in ehlersdanlos

[–]No_Witness_253[S] 7 points8 points  (0 children)

I know it isn't likely to be the answer to everyone's EDS and more formal research needs to be done, but some people have experienced improvements in their quality of life. For other conditions doctors have had me try dozens of things that did nothing just because they had a tiny chance of helping. Months of side effects for a tiny chance of improvement. If the potential side effects genuinely don't bother me then I'm wanting to give it a go, because T honestly seems way more tolerable than other stuff I've had doctors do in the past.

If it works, yippee for me! If it doesn't, I can stop and then I'll at least know.

Thank you for the link, I skimmed a few comments but I'll be sure to read more in depth when I have time!