Today has been rather shitty, could feel my leg getting worse, usual pain killers offered no relief and to top it off my boss asked what's brought this on? If only I knew I wouldn't do it again!! So been stuck in bed since 4 with heat blanket and more meds hoping the flair is short so I can go to work tomorrow. Just needed a space to rant!
So, being I just joined and always love to raise awareness about everything, I figured I would share my story. When I was in kindergarten (6 years old), I got caught upside down on monkey bars, with my right foot/ankle between the bars. My mom took me immediately to the doctor to get xrays, they said it was nothing, just a sprain. Rinse and repeat for 5 years in 5th grade after countless doctors, countless people saying I'm faking this for attention, or milking it, or exaggerating, or it's all in my head. (I was almost 11 at this time) and they finally did an MRI after I cried at the state fair cause it hurt to walk and my mom finally realized I wasnt faking it for attention. So what happens? They discovered that I had shattered a bone from kindergarten, and had been walking on it for 5 years. They scheduled me for my 1st right ankle surgery to repair the shattered bone. Now it is 7th grade, I'm about 13 years old, and still having issues, so another MRI is done but from knee down instead of just ankle, and discovered that there were torn and shredded tendons and ligaments above my ankle, almost up to my mid-cap. Second surgery scheduled and done to repair the tendons and ligaments, but of course I'm still having issues. Physical Therapy, psychologists, orthopedic doctors, nerve conduction studies, etc etc. Until 2013, I was in the 10th grade and 16 years old, I had my 3rd surgery to remove pinched nerve that was trapped in the scar tissue and being pinched with every step, they fix a sagging muscle, scrape scar tissue, and close me up. I am STILL having issues, so at 17, 11 years after the initial injury, I was finally diagnosed with Complex Regional Pain Sydnrome/Reflex Sympathetic Dystrophy (CRPS/RSD) of my right foot and ankle. I have had it since kindergarten and the original injury caused it, and remission is only possible within the 1st year to 2 years. At 19, I went to the "best CRPS dr on the east coast" in Winston Salem(.2.5 hours away from my home) , he didnt believe I had it, and he said let's do a sympathetic nerve block and if it helps you have it if it doesnt you dont. Well that lovely procedure ended up making it spread to my hip from my foot/ankle. I ended up in ER on ketamine and dilaudid just so I wasnt passing out from pain. I went back to the doctor and he only sent his nurse in to speak with me. They thought I was grasping for pain killers and pretty much told me to get lost. I shortly found out after that I have Ehlers Danlos Syndrome as well. I lost my insurance almost 2 years ago, and have been steadily declining in health and mobility. So, here I am, 23 years old, having to use a cane to walk, and may have to graduate to a walker soon. And that's my story! Any questions, feel free to ask :)
“The girl was a gypsy before an illness took control of her legs, now she watches in awe the world pass by whilst stillness teaches her about inner strength”
I’ve had crps/rsd since I was 11 I’m now 19 I’m just feeling down because I’ve broken my right leg and my left leg has crps making it difficult to get around so now I’m using a wheelchair to get around it’s just sent me back into a bad headspace, I’d really love to make some friends with this condition to have someone who understands this nightmare😭
Today marks the 30th wedding anniversary and the man I married in 1989 have not said a word to me other than yelling and being nasty arrogant. This breaks my heart because I always want to celebrate and planed to renew our vows today at the beach because is the pearl anniversary, but he is focus in other things specially himself that nothing else matter😭😭😭😭😭😭😭🐾
When I don’t have any strength to get out of bed my Shadow Belle wakes me up pull me out of bed and she literally takes me out for a walk and then speed up to a jog. The most interesting thing is in the sweet way she does that I love it 🥰🐾
I thought I’d share my care package, just in case anyone is looking for ideas to add.
Books
Sermons/any YouTube videos
Games
TENS machine!
Hot water bottle
Menthol cream
A bar of chocolate ( if I can eat. I have CRPS in the left side of my face ).
GOD bless ❤️
It’s been 3 days since I’ve misused my pills (codeine etc). CRPS is hell, codeine never helps my pain go away, it just makes me go in a state of euphoria, which I crave, I guess it takes my mind of things. I am 15 years old, I’ve been dealing with CRPS, Depression, etc for over 2 years now, I started misusing my pills a couple months ago. I was misusing daily. I was also born with mild Cerebral Palsy. I deal with CRPS, tumours, Depression, Anxiety, and Misusing of pills. #crpsfighter #CerebralPalsy #Depression #teenager #ComplexRegionalPainSyndrome
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