Joint hypermobility (and Ehlers Danlos) is more common amongst neurodivergent people than the general population. I didn’t learn this until adulthood, but it has had an impact on my overall health all my life nonetheless. Due to hypermobility, my right shoulder pops out of its socket while I sleep— not a fun way to wake up!!
Do you have joint hypermobility or consider yourself to be double-jointed? How does it affect you?
Tomorrow afternoon I’ll be having an MRA of my aorta. This is because we think I may have Takayasu’s Arteritis. Has anyone else had an MRA or Angiogram before? What was your experience like?
I met with my Rheumatologist today in hopes of getting some answers. While I did learn some new information, fear and additional questions remain. My confusing results show that I am testing positive for an autoimmune disease, but they don’t know what it is. Some of my test results are abnormal, but not enough to diagnose me with a specific condition. He wants me to watch out for symptoms of Lupus. I’m scared. I’m terrified of the words he used, including connective tissue disorder. I know worrying isn’t helpful, but I can’t help it. All I can do is pray. #Lupus#ConnectiveTissueDisorder#Undiagnosed autoimmune disease
There's a vulnerable post up on my Instagram @theburdenofstars about these puppies, if you folks have any medically or physically specific questions about using them and their effect, or acquiring them, I'd love to answer!
I’ve had a multitude of surgeries to repair the damage caused by the 100s and 100s of dislocations I’ve experienced over the course of my lifetime. I read somewhere a while back that surgery was actually not as successful for EDS patients due to it being a genetic condition (which seems to be my experience with repeat surgeries or post-op complications).
👉 So here are my questions for you bendy folks:
• How have your surgical experiences been? • Have you had success with surgery? • Have you had more complications post-op? • How has your ortho team navigated EDS-related complications?
Last night I wanted to scream. I was angry. I was tired. I just wanted to go to bed. But my husband mentioned something about the girls needing to clean their room because it was horrible. I felt so guilty because it wasn’t perfect so I made myself (and the girls) stay up and start cleaning it. He said to just go to bed and it can be done tomorrow Why do I do that to myself? The minute I think somethings not perfect, I freak out. I HATE feeling this way. The minute I know I’m not the best at what I’m doing, depression comes back. I have several chronic illnesses and last night I just wanted to sleep. Why didn’t I just let myself do that? But I’m afraid no one close to me understands what I’m going through. So it’s not like they’d care really. #PosturalOrthostaticTachycardiaSyndrome#Fibromyalgia#SpinalStenosis#ConnectiveTissueDisorder
I have always hurt. I have always been able to do things with my body other could not. I just thought I was normal until recently I had a friend tell me that if your age number starts with 20 pain and fatigue should not be in your vocabulary. And so began my journey. I have had 5 kids (one who passed away) and I just always thought my fatigue was from being pregnant or being a mom, up until my youngest passed away and I realized I shouldn’t be this tired. Anyway long story short have been seeing my any doctors and we’re finally 🤞🏻 getting close to a diagnosis. Not that a diagnosis will change my pain or fatigue but will give my family and kids a reason why mommy hurts/ why mommy is so tired.
I thought I knew my body. I thought I knew the life we were going to live together. I thought I knew her.
One day, out of the blue, she decided to betray me. Let’s be honest here though, was it really one day? Was it really out of the blue?
Her betrayal came so fast, but there were signs along the way. The inability to sleep is where it all began. For years I have tried many things to get her to sleep, to rest. I’ve tried the melodic crashes of the ocean waves, the thunderous claps of a storm. If it is white noise, her ears have heard them all.
Once she got into the rhythm of not sleeping, she slowly allowed depression to creep its way into our lives. How could she? How dare she? What happened to the keeper of the gate?
Anxiety! Anxiety was no burglar in the night. No! stormed the castle walls. Our defenses were caught off guard and my walls crashed to the ground with ease. Betrayal of the worst kind, leaving the door unlocked for the unsavory to enter in and pillage as it sees fit!
Wait! What’s this now? Why can I not move without pain? Pain so deep that I’m not sure I WANT to move, much less if I CAN move.
Betrayal. Betrayal of the worst kind. She let in all those things that no one else can see. Why? Why did she betray me so much, so many times? I trusted her. I trusted that we would enjoy life and live it to the fullest. What happened to our bond? Our bond that would allow us to play with my son as he grows and gets so active. What happened to the trust? The trust that when I stood, I knew she could take me to the destination of my choosing.
Why? When? How? What? No matter how many times I ask her, even in her silence she continues to betray me.
Betrayal.
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