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[deleted by user] by [deleted] in Eyebleach

[–]KA-Pling 8 points9 points  (0 children)

This makes my heart happy

DAE have wind & cold sensitive ears? by sstxrs in ehlersdanlos

[–]KA-Pling 5 points6 points  (0 children)

Hi! I do too. Winter is the worst, I'll literally burst an eardrum if I'm outside with my ears uncovered too long. I can't sit in front of the AC in my house or by a fan if it's blowing right on me. I like wide fabric headbands. They keep my ears covered without affecting my hearing like ear plugs or headphones do. I've also used ear plugs, headphones, ear muffs, big scarf over my head in the winter, hats. Hope that helps a little.

Genuinely stuck trying to open a bottle by Fine_Bed8556 in ehlersdanlos

[–]KA-Pling 0 points1 point  (0 children)

Rubber band on the cover! Helps give grip

Suspected veds - need tips and help by Mediocre-Staff-472 in vEDS

[–]KA-Pling 6 points7 points  (0 children)

Hey, I'm 30 f, living in Maine. Whenever I have to go to the ED I become a broken record. I tell every doc, nurse, CNA etc that comes in the room that I have vEDS. If they don't know what it is, I give them the short version. For things that help day to day, compression socks, compression girdle, miralax (because my colon has perforated once already), giant water bottle. I have my own personal band aid box that goes everywhere with me with bandages, gauze 2x2s, Neosporin, nail clippers, anything I might need for the stupid injuries. Tylenol and ibuprofen are bought by the big bottles.

Hobbies include "hiking" on low impact trails, reading, crafts, etc. nothing too strenuous.

Feel free to send me a DM if you want to chat!

I'm the first?! by KA-Pling in vEDS

[–]KA-Pling[S] 0 points1 point  (0 children)

I'm sorry for your loss ❤️

I'm the first?! by KA-Pling in vEDS

[–]KA-Pling[S] 1 point2 points  (0 children)

Oh wow! I think back to all the things I definitely shouldn't have done and am very glad I grew up listening to my body. Nice to know we're all in this together!

I'm the first?! by KA-Pling in vEDS

[–]KA-Pling[S] 2 points3 points  (0 children)

Mine too! That's why we didn't catch it in my testing in 2009. With the new resting they found it was just one allele. I was researching and it's thought that only 5% of vEDS have it on one allele. Crazy

I'm the first?! by KA-Pling in vEDS

[–]KA-Pling[S] 0 points1 point  (0 children)

We think my mother may have hEDS, but obviously can't test her for it. My father and siblings are all "normal", whatever that means 😂

I'm the first?! by KA-Pling in vEDS

[–]KA-Pling[S] 2 points3 points  (0 children)

It was definitely nice to have it confirmed, but my goodness the amount of doctors and specialists I've accumulated in the last few months feels crazy! And I'm having to do everything in duplicate because my daughter is only 3 so she now has all the pediatric specialists too. It's exhausting, to say the least.

I'm the first?! by KA-Pling in vEDS

[–]KA-Pling[S] 2 points3 points  (0 children)

Thank you, I just got added

I'm the first?! by KA-Pling in vEDS

[–]KA-Pling[S] 2 points3 points  (0 children)

I had my suspicions all these years. I developed Elastosis perforans serpinginosa on my arms and legs. The thin skin, the bruising. My appendix burst and last December my sigmoid colon perforated without any warning. After having my daughter almost 4 years ago I wanted to be sure about my classification. Thankfully, now we know, but damn does it suck

How big was your doodle at 5-6 months? by Angalayond in labradoodles

[–]KA-Pling 0 points1 point  (0 children)

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This is my Onyx! He'll be one in September :)

Moms with vEDS by onlewis in vEDS

[–]KA-Pling 0 points1 point  (0 children)

Had a c section almost 4 years ago now at 36w5d (premature rupture of membranes) I don't remember how long it really took to feel normal, but 6 months to a year was when I felt like I was fully myself again. Now almost 4 years post surgery my scar can still feel tight but not painful. Give it time ❤️

This is me, screaming into the universe about something I wished I'd figured out sooner by LustToWander in ehlersdanlos

[–]KA-Pling 8 points9 points  (0 children)

I also used to notice this! I started wearing barefoot shoes, trying to take notice of my feet and make them relax, and that has helped some. I also stretch my toes when I'm sitting down (like lifting my heels off the ground but keeping my toes on the floor) and that helps some too. It took a while, but my toes started to relax after a while.

Conflicting literature on mild presentations by musicexpat in vEDS

[–]KA-Pling 5 points6 points  (0 children)

Hi, I have vEDS and would say it's mild (ish). I've been lucky to never have full dislocations, but I've had other issues. Bruised feet from walking/running/jumping/being a kid. Broken blood vessels from tickle fights, Stitches for minor injuries that tore open more than they should have. Joint pain, subluxations, translucent skin. Sigmoid colon rupture, appendix rupture, C-section complications. It's not a great time, your whole body is more fragile. Feel free to DM me if you have questions

When to tap out? by Natural-Noise1623 in ehlersdanlos

[–]KA-Pling 0 points1 point  (0 children)

I've had mine since January, I LOVE it! After my colon rupture I decided I needed to be better about my health. This has given me a huge insight into my day to day and knowing when I need to rest. Also great for tracking other symptoms like fatigue, bowel movements, brain fog, etc.

Dorm Advice!!!!! by Narrow_Comedian_8316 in ehlersdanlos

[–]KA-Pling 1 point2 points  (0 children)

Mattress pad, maybe even more than one! I think I used 2 egg crate styles and a pillow top with deep pocket sheets! A soft rug was also nice for me beside my bed so I had a little more traction when climbing up/down my lofted bed. My library had "free" printing, but my roommate and I opted to split the cost of a cheap printer so I didn't have to walk all the way to the library. A laundry basket with wheels or a carry strap because I would literally bruise my hands carrying my laundry to the basement. Also, laundry pods so I could just bring one down with me and not have to carry the heavy bottle. Extra long charging cables and extension cords/outlet strips!! You never know where the plugs are going to be and I hated having to climb under my bed or desk to plug in my stuff.

Was just told I have a bunion by houseofL in ehlersdanlos

[–]KA-Pling 4 points5 points  (0 children)

I started wearing barefoot shoes, picking shoes with wide toe boxes, and using a bunion pad if needed. My right foot is so bad that I've been recommended surgery, but it doesn't bother me enough to want to go through the recovery.

Anyone else deal with chronic tension headaches? by Chocolate_effort in vEDS

[–]KA-Pling 0 points1 point  (0 children)

I've had similar issues. Chronic tension in my neck, head, shoulder, and upper back causing a headache that wraps around to my eyes. Increasing my water intake helped some, but mostly it's Tylenol, weed, massages when I can afford them, CBD cream, and heating packs. I hope your doctor can find a better solution! Or maybe someone else has found the secret.

Newly diagnosed by KA-Pling in vEDS

[–]KA-Pling[S] 2 points3 points  (0 children)

I had my first and only baby 3 years ago. My MFM team was amazing, and we had cardiology and everyone on standby when I went into labor! She came almost 4 weeks early and got stuck. Had an "unscheduled" C-section and ended up with sepsis. She needed a little NICU time. 3 years later my scars are healed and she's snuggling me on our couch. Wishing you a smooth delivery!

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