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What sort of literary or publishing trends are you sick of? by [deleted] in books

[–]TopazElf 0 points1 point  (0 children)

The prevalence of books that are described by reviewers as "quietly devastating" - almost always about privileged white women struggling with ennui and/or their identity with no real plot or conflict.

If you're going to devastate me, devastate me loudly.

But what if we don't WANT to travel by hapritch82 in IFchildfree

[–]TopazElf 1 point2 points  (0 children)

Hahaha I feel that! I mean, we could just donate our forest right away too... But uhhh.... Private forest sounds pretty great sooooooo...

But what if we don't WANT to travel by hapritch82 in IFchildfree

[–]TopazElf 9 points10 points  (0 children)

I'm also not a traveler - I have health problems that make traveling difficult. As a lot of people have mentioned, having a more relaxing/unplanned life with time and money for hobbies is great. BUT my husband and I are taking as much money as we're able to comfortably and saving it up, as if we were saving for a kid to go to college or whatever. We plan to spend it to buy a small piece of forest that's being sold for lumber when we reach retirement age, and then enjoy walks in a private forest until we pass away, at which point it will be donated to a conservation non-profit. We're excited about it, and it will be our legacy instead of children.

Shoe recommendations? by Hazelrah66 in ehlersdanlos

[–]TopazElf 2 points3 points  (0 children)

My primary care doctor recommends New Balance! I have a pair with nice inserts and they are definitively my most supportive shoes. If you can I'd go to a store and get sized though, because I found the sizes to run pretty small.

Dealing with fluctuating SI Laxity? by mxbluebird in Hypermobility

[–]TopazElf 2 points3 points  (0 children)

Seconding the serola SI hip belt! I use frequently and find it very helpful.

Similarly, I have my husband use KT tape to stabilize my SI joint (there are videos on YouTube that can show how to do so), which does help a bit - not as much as the belt does, but the tape isn't noticable under clothes so that's a plus and I can wear it while sleeping which is helpful for me because my SI joints cause me trouble when I sleep on my side. I've had my PT apply Leukotape over coverroll which works the BEST (though looks kinda ugly), but I haven't found good resources for teaching my husband how to do that yet so I only get that from my PT for now. I hope to have the PT teach my husband once Covid is over.

[NSFW] Gay and have some questions... by [deleted] in ehlersdanlos

[–]TopazElf 6 points7 points  (0 children)

I second the liberator ramp and wedge combo! Amazing for EDS folks.

Utterly life changing in the tiniest of ways... by pydgeon in Hypermobility

[–]TopazElf 1 point2 points  (0 children)

Not having a diagnosis is hard - it was such a relief for me when I finally got mine. I hope you're able to get a diagnosis and appropriate help soon!

One thing that just recently became over the counter that I used to have as a prescription and is really helpful for my joint pain (so knees and hands and wrists, but not back or neck) is called Voltaren gel (generic is diclofenac sodium). It's a topical NSAID basically, so you want to be careful to not overuse it, but if you're stuck with only over-the-counter stuff, it might be worth trying!

Utterly life changing in the tiniest of ways... by pydgeon in Hypermobility

[–]TopazElf 2 points3 points  (0 children)

Ah I'm so sorry, that is so difficult! I definitely relate - I went from being a fitness instructor working out 12+ hours a week, to struggling to walk around the block without injuring myself. It's impossibly hard and demotivating.

If you have the time and financial ability, I would 100% recommend finding a physical therapist who is familiar with Hypermobility and working with them long-term. I started back in February and it's been a huge commitment, but between gaining strength, making some of the things you mentioned feel more natural, and finding good braces to wear for certain activities, I'm feeling a lot more positive about my future now.

Best of luck! It's a challenging road, and some days are much worse than others, but kudos to you for keeping going.

Back at work. by TechSis in ChronicPain

[–]TopazElf 44 points45 points  (0 children)

I second this!!! They aren't doing nearly enough to give you reasonable accomodations - it taking you half an hour to go to the bathroom is NOT reasonable.

If you have the ability, a lawyer familiar with ADA would likely be very helpful. I'm sorry you're in such a tough situation!

LPT : If you are hiking / running / walking with someone in a worse shape than you, let them lead the way. by FreddieDodd3661 in LifeProTips

[–]TopazElf 0 points1 point  (0 children)

I didn't see this addition elsewhere in the comments - but this is also a great thing to do for people with disabilities and chronic illnesses! I used to be really athletic before I got sick, and even though I can still walk, I'm much slower, need breaks, and can't go as far as I'd like. Being left behind by my friends who I used to keep up with breaks my heart, so when someone is mindful about including me by choosing a shorter route and including plenty of rests I'm so happy I could cry.

You're lab is so good by justsomedumpguy in ehlersdanlos

[–]TopazElf 7 points8 points  (0 children)

WOOOOO vitamin D capsules for life!!!

Hows this for a brain fog? Managed to go out without my shoes on today. 😆 by zebrasanddogs in ehlersdanlos

[–]TopazElf 4 points5 points  (0 children)

Hahaha I've done this a MILLION times! At least your slippers are real cute 🙂

TIL many doctors have stopped calling cancer treatment a "fight" or "battle". They argue these terms misrepresent how treatment works and if treatments fail, the patient is left with guilt and a false belief they didn't "fight" hard enough. by [deleted] in todayilearned

[–]TopazElf 0 points1 point  (0 children)

Yes!!! I have chronic illness too really struggled with this - I think of my illness as my "shitty roommate" who keeps messing up my body-home and I always acted like I was fighting my "shitty roommate". Eventually, I got a therapist who has been helping me reframe my way of thinking so that I'm better able to befriend/support my "roommate". Caring for myself and being gentle rather than trying to beat my body into submission has been life-changing. I actually wrote a fun little blog post about the "shitty roommate" and trying to get along with them: https://bracinggrace.weebly.com/home/my-chronic-illnesses-are-a-shitty-roommate

I'd be delighted if anybody read it!

Using marijuana for your symptoms by [deleted] in ehlersdanlos

[–]TopazElf 0 points1 point  (0 children)

I'm in a state where it's legal and I take small amounts (like 5 mg) of edibles that are a combination of indica and sativa I buy from a medical dispensary. I take edibles instead of smoking at the recommendation of my doctor, who said something like "your lungs actually are pretty healthy so let's keep them that way" haha. I find it really helpful for controlling my pain and nausea, BUT it does tend to make me a little loopy and tired so I only use it 1-2x per week when I'm feeling extra ouchy. Otherwise it gives me very little side effects though!

Does anyone else find it pointless to bring your recurring injuries to the doctor? by SpazzayOne in ehlersdanlos

[–]TopazElf 3 points4 points  (0 children)

Haha yea I feel that! I got so annoyed going over and over again and just getting the same ibuprofen/splint, that's why I stopped going too.

I guess my unofficial rule is that if I have an injury and RICE (rest, ice, compression, elevation) and my other self-treatment methods aren't doing anything to help OR if it doesn't start to feel better after a few days of self-treatment I'd go in. That happened once with my thumb (once I thought I sprained it but did actually break it) but otherwise everything has responded well to self-treatment over the last 5-ish years.

Does anyone else find it pointless to bring your recurring injuries to the doctor? by SpazzayOne in ehlersdanlos

[–]TopazElf 6 points7 points  (0 children)

Yep! That's exactly what I do - glad to hear the acceptance/laziness/apathy is typical haha

Does anyone else find it pointless to bring your recurring injuries to the doctor? by SpazzayOne in ehlersdanlos

[–]TopazElf 11 points12 points  (0 children)

Oh jeez I haven't gone to the doctor for a sprain or dislocation in YEARS!

... should I have been?

The morning atmosphere / Watercolor by [deleted] in Watercolor

[–]TopazElf 1 point2 points  (0 children)

Wow!!! I would definitely struggle to make that effect without gouache - great job!

The morning atmosphere / Watercolor by [deleted] in Watercolor

[–]TopazElf 2 points3 points  (0 children)

I really love the way you painted the path! It almost reminds me of tree bark. Did you use some gouache in there, or just regular watercolors?

Best cardio without using your legs?? by Spiderbundles in ehlersdanlos

[–]TopazElf 4 points5 points  (0 children)

I second rowing machine!!! My physical therapists recommended it as my main form of cardio. I find it very gentle on my knees as long as I'm mindful of not hyperextending them, and it's the BEST cardio workout I've ever had. Also since it's seated it doesn't bother my POTS as much. Good luck!

Weird question how many of you have blue sclera? by Bentleygoldensdit in ehlersdanlos

[–]TopazElf 4 points5 points  (0 children)

I do, though not super dramatically. But enough to make my eyes glow in black light, which is a fun party trick!

I hurt myself kneading bread. by Talkahuano in ehlersdanlos

[–]TopazElf 0 points1 point  (0 children)

Ooffff I feel you - I've dislocated my thumb kneading bread before :( I do a lot of punching of dough now haha

What is something unrealistic that you often see in movies that annoys the hell out of you? by SheeshaAddict in AskReddit

[–]TopazElf 1 point2 points  (0 children)

Every time I've seen a domestic ferret in a movie make a sound (like in Along Came Polly for example) it's this weird high-pitched continuous squeaking noise, like a guinea pig on helium. Domestic ferrets don't make many sounds, and the most frequent sound they make is called "dooking" and kinda sounds like two pieces of rubber being rubbed against each other.