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#Surgery #trigeminal neuralgia

First time

I shouted at my cat now loudly and I got a quick shock in my head.

Its 2 months post op.


Finally getting my knee replacement #mva #Surgery #kneepain #ChronicPain

February 26,2006 I was stopped at a red light when I was hit from behind by a flatbed tow truck carrying a car. The truck pushed my van into the car in front of me and then pushed us into the three vehicles in front of that one. A year later I had my first knee scope surgery to remove a torn meniscus. Fifteen years later I had my second surgery to remove arthritis and more torn cartilage. This is when I found out I was walking bone on bone. Today after playing in the garden my knee started locking up with some of the of the worest pain since the accident. On July 19 I go in to have a complete knee replacement. It is going to be very odd not to have pain after so long.


My Year Post Op Thoughts #CerebralPalsy #Surgery #Scars #body Love #Disability Pride #body Image

Year Post Op Thoughts:

You lie in bed, sprawled out over the covers, you move to sit up getting a better view of your lower half. Steadying your leg, you take your pointer finger and trace the red hot scar that stretches across your skin. Tingles move throughout your body as quickly as your finger moves across it. Hand still lying across your scars you take a moment before your hand moves to the softer pink above it. Enjoying the contrast. Before moving onto the quieter lines throughout your body, waiting for the jolt of memories, proud you could still find the first indents so easily.

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First day back at school!

Today was my first day back at school! It was super exciting to see some of my friends again. I’m 12 days post op from my occult teathered cord release surgery, and feeling pretty good! So far I’m just so so tired, and having some nerve pain down my legs. Both are to be expected. I only stayed for two periods and then had to come home and take a nap but I am so proud of myself for going, walking to each class and up the stairs, and wearing jeans for the first time in 2 weeks lol. Going again for a short bit tomorrow, and hoping to increase slowly. I never knew that I would be this tired-from doing hardly anything. Walking to the toilet, to the kitchen, and then filling my med containers feels like a marathon like never before. EDS awareness month feels like a good time to reflect on how much fatigue affects me, now more than ever. I’m hoping that once I’m completely off the pain killers I’ll be less tired.
Here’s to tomorrow being a great, low symptom day for you! ❤️🦓 #EhlersDanlosSyndrome #ChronicFatigue #Surgery

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What helps you keep going?

I’m just a couple of weeks short of being five months recovered from my emergency surgery right after Christmas. I feel like I’m FINALLY getting back to my baseline — take that skull removal!

This entire period has felt like one long test in endurance and patience. I kept telling myself “you WILL get better, just keep going” and I feel like it’s finally coming true.

Here’s what’s kept me going:

📱 Group text chats where I don’t have to filter myself

📚 Books and all of the goodness that is my local library

🧘‍♀️ The concept of yoga (I knew that once I felt up to practicing again, that it would be a huge milestone for me)

🐶 My dog, Doxon, who has not left my side and slept with me on the couch for THREE whole months

🍭 Hot Tamales (the candy… such a comfort treat for me!)

What about you?

#CheckInWithMe #MentalHealth #ChronicPain #ChronicIllness #Disability #RareDisease #Migraine #Surgery #CheerMeOn

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Misconceptions about recovery

I’m on day two of my teathered spinal cord surgery recovery, and it’s completely different from what I expected. I’ve never had surgery before this, and I assumed that the medication given in the hospital was supposed to completely eliminate the pain. I’m finding out now that it doesn’t. I also believed that it would only take two weeks for the incision to heal, and then I would be back at work. Again, wrong. The neurosurgeon said that with any spinal surgery, all your usual symptoms (my EDS, Mast cells, POTS, etc) flare up and nerve pain travels through your body to create new pathways. I am my own worst enemy here, I want to push myself, make my own meals, but I know future me will appreciate me taking it slow. A combination of strong pain killers, kombucha and ice packs is what’s keeping me going now, as I’m still waiting for those stool softeners to work. Who knew that you needed your back muscles to toilet yourself effectively? Or that walking would make you nauseous? I didn’t sign up for any of this…. My fellow zebras are being so kind with recovery advice, distractions, and support, and I couldn’t thank you guys enough. ❤️🙏 #EhlersDanlosSyndrome #SpinalSurgery #teatheredcord #Recovery #Surgery

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In Recovery From Surgery

I finally had my occult teathered spinal cord removed yesterday! After years of waiting for a diagnosis, and seemingly endless hoops to jump through before the operation, it’s finally over. They said it went really well, and said the cord was very tight, so it’s a good thing they removed it. Dr. Pang did an amazing job and really explained the whole process very well. No medical gaslighting here! When I got to the PACU I had to stay there for five hours because there was no bed for me, and that was my only complaint since it’s like pergatory down there. Spent one night in the hospital laying completely flat, not allowed to lift my head. This morning they rose the bed fifteen inches at a time every hour until I was upright, and then I practiced walking. On my way home now. Thank you all for your well wishes before surgery! Love my new Mighty community. #teatheredcord #SpinalSurgery #Surgery #Recovery

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I need confidence help #Postop #Surgery #EhlersDanlosSyndrome #Anxiety

I need some help. I had ankle surgery in January still trying to recover just got out of the boot. I need to wear a compression sock because it still swells to the point of being painful. I wear it just fine with pants but I need some mental help i will be going to a warmer climate in a few weeks and not sure how to deal with shorts and compression sock. I'm super self conscious and keep my issues to my self but I'll over heat if I try to wear pants all weekend. Any suggestions or cute outfit ideas #ChronicIllnessEDS #Hypermobility #hypermobileehlers-DanlosSyndrome(hEDS)

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Feeling defeated. Anyone want to chat #ChronicIllnessEDS #ChronicPain

I am 8 weeks out from ankle surgery. I am finally allowed out of my boot to start moving my ankle. 2 weeks later than planned because my incision was still open. I have no range of motion and it is making me feel like a failure I'm supposed to start writing the alphabet with my foot with no leg movement. I can't do it. it takes all the muscles in my leg just to move my foot up and down the tiniest amount. I feel horrible #hypermobileehlers-DanlosSyndrome(hEDS) #Surgery #Depression #ChronicIllnessEDS

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