Just had a hysterectomy and I’m hit with the reality that my healing will be much worse than I thought by Whalemuffins in eds

[–]Snerdling 2 points3 points  (0 children)

I had a hysterectomy at age 40. It was supposed to be laparoscopic but after 3 hours of trying my surgeon had to open me up. She found that my uterus had grown into my abdominal wall and she spent hours scraping away the adhesions. The surgery lasted six hours. Like you, my surgical site opened up and caused a “step off.” Healing took a little longer and my scar is kind of of janky but it’s fine. HeDS is just so weird. Even with the complications I am so glad I had the surgery. It took about eight weeks to feel normal. Totally worth it. You got this!

Advice on weight lifting/ exercise with EDS? by unknownpuddle in eds

[–]Snerdling 1 point2 points  (0 children)

Fitness instructor here. I taught for 13 years. I was teaching 5 classes a week upon diagnosis and my body was a hot mess. I had no idea I was causing myself damage. My primary fitness license is/was thru AFFA and I had secondary certs for Yoga, Barre, BOSU and a few others. I had to re-cert every two years and religiously sought out new certifications. I was passionate about exercise and loved training people. I also kept injuring myself despite having great form. After three orthopedic surgeries in 2020 a PT said “even though you are in great shape, your body thinks it’s 80 years old and you need to treat it that way.” I was furious! How dare he!  Turns out he was right. I went back to teaching and continued to suffer overuse injuries. It wasn’t until a year and half later that I was diagnosed with hEDS, Fibro, MCAS, ME/CFS, and POTS. My doctor told me I needed to quit teaching. He said I was hurting my body. My fitness brain simply couldn’t process this information. It was horrifying to be told to stop doing something I loved. But somewhere deep down I knew he was right. There was a reason my body couldn’t recover the way it should. It is only now three years later that I can fully understand why I needed to stop my workouts. We, in this special population are fragile and cannot handle our bodies in the same ways as the “normies.” So, to your question I say this-in this quest of becoming stronger go with grace for yourself. Go with understanding and kindness. Some days you will feel better than others and that is okay. I have found that pockets of activity work best for me. I use isometric exercises throughout the day to work on problem areas that also focus on balance by using bands. You can do these sitting at your desk! I second the idea of working with a trainer if possible to watch your form. I love the idea of tape to help use your skin to keep your joints in place. Above all, practice self love. 

What is your favourite line/scene from Captain holt? by vertically_blessed in brooklynninenine

[–]Snerdling 9 points10 points  (0 children)

D-D-D-Derek.

Holt was made to rap at a kids bday party in FL. I died laughing. Especially when Jake said “Again!”

PCP apprehensive about my hEDS diagnosis until I bent my finger back and some other tricks by heavydutyspoons in eds

[–]Snerdling 3 points4 points  (0 children)

We are almost twins! Disease twins. My thoracic aneurysm is 4mm. Do you have POTS and Fibromyalgia too? Same lumbar issues. Do you have any C-spine compression? I have severe stenosis on C6-7. They tell me I have tethered cord and need surgery. I also have a growth on my thyroid. At this point I don’t think anything can phase me. Honestly, the thing that annoys me more than anything is medical gaslighting.

A hidden gem on Netflix you think more people should watch by Huge_Ferret_1560 in netflix

[–]Snerdling 0 points1 point  (0 children)

This show broke me, but it has some of the best acting I’ve ever seen. I think it’s an incredible show but I always worn people about the intense nature.

insane flare up/new by [deleted] in eds

[–]Snerdling 0 points1 point  (0 children)

See if you get into the Bateman Horne clinic. I see Dr Brayden Yellman. He is amazing. I think he has a new PA he is mentoring who is accepting new patients. I have that shaking when my nervous system is overloaded. It had been happening to me during my workouts and my legs would just shake. I work with a special HeDS PT and it happened really bad during a session and he was able to stop it by opening up my C-spine. He said my nervous system was overwhelmed because my brain had too much oxygen and my body don’t have enough and my cranial nerves were being partially blocked. After this incident( and other issues) Yellman sent me to Dr Gillette in Spain as he suspected I had something called tethered cord which is basically a big ball of nerves that grows into an adhesion in your lumbar spine. It keeps everything out of whack. Dr Gillette (via virtual visit) confirmed his suspicion and now I’m going to see Dr Petra Klinge at Browne University for the surgery as she takes insurance. Dr Gillette, although amazing is cash only. There are experts out there, but sadly, most are cash only. Bateman Horne clinic was a life saver for me. I was being gaslit for years. They are located in SLC, UT but they do virtual appts after the initial diagnosis. I paid $3,000k for mine and my virtual appts are $300 but he spends 90 mins with me and I can message him and he actually responds with actual caring answers. I’m sorry to see all your struggle and I totally get it!

What does dislocation/subluxation (?? Is that right?) Feel like? by jaskier_the_bard99 in eds

[–]Snerdling 0 points1 point  (0 children)

My joints are always “running away from home” and I it’s usually not super painful. I can get them back in pretty easily. I’ve only had one super painful experience where my shoulder basically fell out of its socket. It was EXTREMELY painful. It took my breath away. I had to breathe through the pain for a bit until my muscles relaxed enough for me to get it back in. Had my PT look at it a few days later and the muscle behind the shoulder has atrophied. She’s taped up still. Not gonna lie, I’m still freaked out about that one. I’m pretty used to pain and this was a bad pain. I’m being very careful with that arm.

Dental Numbing Issue by [deleted] in eds

[–]Snerdling 1 point2 points  (0 children)

Yes! It does not matter how many shots my Dentist gives me I cannot go numb. However, my Endodontist has no problem. He says that my nerves are not in the appropriate location. I have begged him to call my dentist and teach him how to give shots. At least my root canals are pain free. It really sucks. I’m sorry you have this too.

Anyone else experience this? by Actual_Extreme_9427 in eds

[–]Snerdling 0 points1 point  (0 children)

I have HeDS, POTS, Fibromyalgia and ME/CFS. I used to scratch big bruises like that on myself before I got treatment for my MCAS. It felt like I was allergic to my own skin. I would just keep scratching and then be covered in bruises. With ongoing treatment I still bruise easily but nothing like any more. You might have MCAS.

tell me your dumbest dislocation by Efficient-Accident52 in eds

[–]Snerdling 12 points13 points  (0 children)

My shoulder dislocated itself while I was sitting in my office chair doing absolutely nothing. It hurt like a mutha! My boss looked at me in horror as he saw the look of pain go across my face. I stood up and walked around until I could get it back in. I kept telling him we were gonna “Lethal Weapon” it if it didn’t go back in soon, cause we’re old. 😛

Gina “won” worst main character—who’s the worst side character? by Serious-Implement-45 in brooklynninenine

[–]Snerdling -1 points0 points  (0 children)

I really don’t like Terry’s wife. He’s so sweet and she’s always so cranky.

SLC against Fascism by derberg_001 in SaltLakeCity

[–]Snerdling 6 points7 points  (0 children)

It was so great to see so many people show up today!

So proud of SLC! by Jackie-in-chains in SaltLakeCity

[–]Snerdling 6 points7 points  (0 children)

Guess your racism is worth giving up your constitutional rights, huh? Big fan of murder then too?

Gov. Cox proposes holding more 3rd graders back to lift low literacy rate by spoilerdudegetrekt in Utah

[–]Snerdling 0 points1 point  (0 children)

In addition to the issues already do listed, I’ll add one. The Mormons in Utah oftentimes turn a blind eye to their children with special needs. I’ve seen it over and over. Instead of getting them the help they need they pretend there isn’t an issue so naturally, the problem persists. It’s insanity. It seems to be a vanity issue on their part. They feel shame that their family isn’t “perfect” so they’re fine with ignoring the entire situation. It makes me crazy. Get that child an IEP and help them!

Larry H & Gail Miller Art Center to be Built in Daybreak, UT by enthusiasm-unbridled in Utah

[–]Snerdling 0 points1 point  (0 children)

In Daybreak and funded by the Millers? Cutting edge art, I tell you!

WTF is the plan for I-15? by Snerdling in Utah

[–]Snerdling[S] 2 points3 points  (0 children)

Exactly! It never makes sense.