ConnectiveTissueDisorder

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    Almost died… again.

    Yesterday was a really mixed day, I had a great time chatting with and slowly working on stuff on the other side of the house (I just moved in to my new duplex, where I live on one side and my family the other) with my amazing partner and two friends. I am truly blessed to have such great people in my life. 💜

    I have been pushing very hard with both getting my new house ready and getting my old house ready to go on the market to sell it. After my friends left though, my body decided it was time to shut down and I had a pretty scary medical crisis; luckily, my partner is very good under pressure and we were able to handle it. I don’t know though what would have happened had I continued to push today as I have been. 18 hour work days for a healthy person is a lot, never mind in this body. It is hard to accept dying, but dying by wasting away is harder than I thought. My muscles are eating themselves and my bone mass is going as well; my ankle foot orthotics, knee braces and ring splints don’t fit anymore because I am literally wasting away. I just touch something and my skin bruises and tears. My parts don’t stay in place (Ehlers Danlos); my fingers/toes/ribs/knees/hips sublux daily. My bloating is so bad that my skin/tissue is tearing on the inside. My pain is chronic and getting more intense. My heart and lungs are struggling and declining in function. That is just a sampling of all that my body is serving up. My body is saying no thank you and that sucks. I am stubborn and still want to do all of the things that I used to be able to do, but I can’t, and when I try, the consequences are very real. Deadly real. I want to enjoy this beautiful new home I have for as long as I can get. Years, not days. So I have set out a plan to use timers to take breaks and have people holding me accountable.

    As always, life is more good than bad. Despite all of the challenges, I consider myself incredibly lucky. I have amazing people in my life, awesome dogs, I am surrounded by beautiful nature, good food, great books, and new adventures to be had.

    Thank you to all of you have chosen to follow me on this difficult journey, I know it’s not easy. I feel so blessed and loved. 💜

    #Abunchofrarediseases #AddisonsDisease #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome #PTSD #FunctionalNeurologicalDisorder #Migraine
    #Asthma
    #CeliacDisease #MitochondrialDisease #MastCellActivationDisorder #Trauma
    #RaynaudsDisease #MentalHealth #Depression
    #Anxiety #ChronicPain
    #ChronicIllness #Disability #dying #RareDisease #rarediseaseawareness #Chronicpainwarrior #ConnectiveTissueDisorder
    #deathanddying

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    Joint Hypermobility

    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?

    #BenignHypermobilityJointSyndrome #EhlersDanlosSyndrome #Hypermobility #AspergersSyndrome #bhjs #EDS #InvisibleDisability #bendy #ConnectiveTissueDisorder

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    MRA/Angiogram #Vasculitis #TakayasusArteritis

    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?

    #RareDisease
    #TakayasusArteritis
    #Vasculitis
    #ConnectiveTissueDisorder
    #ChronicIllness
    #Diagnosis

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    Please reach out to me #CCI #Craniocervicalinstability

    Have you been diagnosed with craniocervical instability? I was diagnosed yesterday and I'm so frightened of it all. If anyone has it or has had it I'd really appreciate if you share your experiences and opinions about it with me. It's always easier to cope with something when you know youre not alone. #CCI #Craniocervicalinstability #EDS #HEDS #hypermobileehlers-DanlosSyndrome(hEDS) #HypermobileTypeEDS #MyalgicEncephalomyelitis #ME #ChronicFatigueSyndromeampME #ConnectiveTissueDisorder #GeneticDisorders #Zebras #MedicalZebra #CervicalInstability

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    The Autoimmune Question

    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

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    Loving something I dreaded.

    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!

    #EDS #ehlers-danlos #ConnectiveTissueDisorder #Braces #fallenarches

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    Surgery & EDS 🤔 What’s your take?

    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?

    Thank in advance for sharing your perspective! 🙏

    #EhlersDanlosSyndrome #HypermobileType #HypermobileTypeEDS #TheBendyBunch #RareDisease #ConnectiveTissueDisorder #Surgery

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    I need understanding #ChronicIllness

    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

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    Hope for a diagnosis #ChronicPain #ChronicFatigue #ConnectiveTissueDisorder #MarfanSyndrome

    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.

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