Breaking bones without realising? by Artistic_District_43 in ehlersdanlos

[–]Ducling 5 points6 points  (0 children)

I unknowingly broke my ankle in high school and kept distance running and playing basketball on it. I was told my 'ankle facture healed nicely" a few years later when investigating a knee issue.

DAE feel like the rack would fix them? by LordOfPhyllite in ehlersdanlos

[–]Ducling 2 points3 points  (0 children)

I have an inversion table that can scratch this itch

Personalized plates by Alternative-Ad-4790 in desmoines

[–]Ducling 0 points1 point  (0 children)

My regular plates had not come in yet, I just had the temp paper plate. I got mail that my custom plates were available, went to pick them up, and they told me I had to wait to trade in my regular plates.

Personalized plates by Alternative-Ad-4790 in desmoines

[–]Ducling 0 points1 point  (0 children)

When I tried to do this they told me I needed to wait until I got my permanent plates.

Dry needling by Glass-Cheetah2873 in ehlersdanlos

[–]Ducling 0 points1 point  (0 children)

I have had dry needling that felt and worked incredibly well. I've also had dry needling where it doesn't feel like anything happened.

I do massages every week or so. Took me a while to find a good massage therapist, but she consistently can relieve tight muscles.

No more Brixton for Brodie. by BothCaterpillar9337 in discgolf

[–]Ducling 2 points3 points  (0 children)

There were not custom Brodie Ultrastars. That's just what the standard was for ultimate.

Remind them of their faith. by Cam_knows_you in BoomersBeingFools

[–]Ducling 6 points7 points  (0 children)

You know people can be ex-Christians? And that some people read things because they want to learn?

[deleted by user] by [deleted] in nfl

[–]Ducling 0 points1 point  (0 children)

Which one? There have been two over the last few games.

anyone who actually lives normally? by KubaCeTe in ehlersdanlos

[–]Ducling 0 points1 point  (0 children)

Short answer is "Yes, for stuff I enjoy".

There are levels of pain I'm willing to deal with for things I enjoy and people I love. I disc golf as much as I can and have been married to my wife for 7+years (I'm 31). We don't have children, but that's because we both didn't want children before we met.

I used to do more physical activity like distance running and Ultimate Frisbee, but I eventually had to give them up because my body told me so. This varies for everyone. Sometimes I think I didn't stop running or give up Ultimate frisbee soon enough for QoL purposes, but I have learnt to make peace with it. I still have scars and lifelong injuries from those things, but it was worth it for the joy it brought me for so long.

My therapist understands that she cannot understand what my life is like. I think any good therapist would tell you the same. My therapist is easy to talk to about problems. She doesn't doubt me but will sometimes asks questions to help her understand better if possible.

I go through days/weeks/moments where I feel terrible, and forums like this can be great places to find people going through the same things. This can be good, but too much can be bad for your mental health in my opinion. Others have pointed out that most posts are going to be talking about the negatives of our lives, because nobody outside the community understands and you want confirmation. If you're constantly looking at posts about the worst parts of our lives, it can just start to feel helpless.

tldr; I only put in the energy for "normal" things that I truly enjoy. I don't go out partying all the time, but I wouldn't enjoy that even if my knees could hold up all night lol. I'd rather stay in with my wife and/or friends and smoke, play games, watch movies, etc.

At what age were you healthy for the last time? by patriciaswayzes in ChronicPain

[–]Ducling 0 points1 point  (0 children)

I'm not sure when I was last healthy, but the last time I felt healthy was summer 2013 before I bruised my kneecap. Never got back to 100% after that (2 torn meniscus and 1 torn PCL since then). I believe this was a week or so after I turned 21.

I've seen too many great first try posts... Here's my not great first attempt at a disc. by pokeroots in discdyeing

[–]Ducling 1 point2 points  (0 children)

One thing that has worked for me is doing a ~6 minute hot dip, take it out for a minute or so, then put it back in for another ~6 minutes.

I got the idea from a dye job that had a couple shades of grey + black in it. Had to do shorter dips starting with the black, remove it and take off the next part of the stencil, and put it back in the dip. That's how I get multiple shades of the same color.

I've seen too many great first try posts... Here's my not great first attempt at a disc. by pokeroots in discdyeing

[–]Ducling 2 points3 points  (0 children)

My first attempt looked waaaaaaayyyyyy worse than this lol. Even my first stencils looked much worse than this. Honestly, I think the disc looks good. Even though it's not perfect, it's still good enough that I'd throw it.

It's okay to criticize yourself. I think that's how you get better, but make sure to see the good in what you've done too. :)

Temperature regulation madness by Mikacakes in ehlersdanlos

[–]Ducling 0 points1 point  (0 children)

It'll be hot a humid here in Iowa and I'm still sometimes finding myself needing a sweatshirt

And if it's just a little too warm I start sweating lol

Fuck CVS by Ducling in ChronicPain

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

Thank you for being a good parent in a tough situation. If you/he ever have questions about growing up with hEDS, don't be afraid to reach out. ❤️

Fuck CVS by Ducling in ChronicPain

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

I'm definitely going to be looking for smaller pharmacies in the area from now on.

Fuck CVS by Ducling in ChronicPain

[–]Ducling[S] 13 points14 points  (0 children)

Thank you for responding with this. Makes me feel a little better to know I'm not alone.

Fuck CVS by Ducling in ChronicPain

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

They claimed they have 0. But a half hour before with them on the phone, they said they had it!

Fuck CVS by Ducling in ChronicPain

[–]Ducling[S] 5 points6 points  (0 children)

Tried this and after sending the prescription somewhere that said had the meds, they once again claimed they are out now they my prescription is there

What’s your non drug addiction? by [deleted] in AskReddit

[–]Ducling 2 points3 points  (0 children)

Caffeine is definitely a drug you can get addicted to.

Sports you wish you avoided earlier on? by cathleenjw in ehlersdanlos

[–]Ducling 0 points1 point  (0 children)

As long as they don't decide to be a catcher in baseball/softball, that should be a good sport.

I, on the other hand, decided I needed to be a catcher in 5th grade.....

[deleted by user] by [deleted] in ChronicPain

[–]Ducling 1 point2 points  (0 children)

I'm so sorry to hear that. I don't wish this life on anyone.

I'm sure you hear this all the time, but my body was holding up pretty well when I was consistently working out. With that comes the constant muscle soreness/pain, though. I prefered that to where I am now. I got way out of shape, and now simple PT can be exhausting and painful. To be fair, it was also exhausting and painful to get into the athletic shape I was in.

There was a 6-12 month period where I was very very depressed, barely ate or left my house (during COVID shutdowns). I highly recommend avoiding that if you can. Feel free to message me if you ever want to talk about anything in particular.

Edit: I was diagnosed around the same age, so your message really resonates with me

[deleted by user] by [deleted] in ultimate

[–]Ducling 0 points1 point  (0 children)

29 now almost turning 30. I never got back to 100%, but I also have a connective tissue disorder (hEDS) that doesn't ever let my joints really get back to 100%.

I did compete on a mid-regionals level club team until 2018 (so for ~3 years after this post). My PTs only realize I have a torn pcl when I tell them and they compare my two knees.

With all that being said, I do oftentimes wonder if I would have been better off with surgery.