hEDS Up

Can a vitamin deficiency be causing #hEDS ? Can #connectivetissueissues really be related to a #vitamin ? When I was 19, I stumped 3 GI specialists who said they couldn’t understand it. I was diagnosed with #celiac and #pernicious #anemia on top of my multiple vague diagnoses #IBS #GERD #hiatalhernia #inflammation UNTIL they did 2 endoscopy procedures and 3 colonoscopy procedures at different hospital systems per their recommendations and referrals. After that, they COULDN’T diagnose me with celiac - only “gluten intolerace”. They COULDN’T diagnose me with pernicious anemia because all they could prove was severe #b12 deficiency. I had to take daily shots and then weekly then monthly for a total of 6 years! My level was 93-97 upon initial testing. It took 3 years ro get over 300 and maintain it. 3 years of weekly! Then monthly another 3 years before I finally held b12 again. Now, interestingly enough, my paternal side has #eds aka #EhlersDanlosSyndrome #hEDS aka #hypermobileehlersdanlossyndrome #connectivetissuedisorder PLUS #HSP aka #hereditaryspasticparaplegia Now, HSP is commonly misdiagnosed with 3 things - #ALS aka #amyotrophiclateralsclerosis #MS aka #multiplesclerosis and DING DING DING 🛎️ #idiopathic #b12deficiency Safe to say I was sent to neurology for rule out and assessment. Now decades later I am on an as needed basis with many specialists. Genetic testing can help but we need more research! Thank you for this article, @Tulane University ! You have helped me consider another perspective on my personal #zebra experience. It’s not so #rare afterall. It seems many have #connectivetissueissues and need support, knowledge, and compassionate care delivery. #hEDSUP #hEDSUPwithme #zebrastrong

1 year ago | [YT] | 0

hEDS Up

Emotional intelligence is the ultimate act of #selflove and #selfrespect. It may seem may seem like a selfless act moment to moment, constantly stepping out and up to be the “bigger person”. Reframing my mindset is crucial for any success in this. True communication, expression, and healing can occur in the setting of high emotional intelligence and effective #selfregulation yeilding immensely positive outcomes. Staying #motivated and #consistent is so hard for me when I want to dig deep into my trauma and gift myself endless justifications for my poor regulation or inability to express greater emotional intelligence. This is a visual I have saved to remind me when I feel like smashing everything. Kinda like this morning. I put on some tunes to shake it out. Today was Stoned Sour and System of a Down. Sometimes its disco, or Gypsy Kings or Toni Braxton. No matter what, I find myself picking vibes purposefully and shedding the yuck to get unstuck. I hope this helps create some new motivating perspectives for your own #healingjourney. Just a #hedsup from me, someone who shares struggles and triumps daily. #duality #universallove #emotionalintelligence #therapy #musictherapy #stonedsour #systemofadown #tonibraxton #gypsykings #feelbetter #hedsupwithme #chronicillness #chronicpain #eds #connectivetissueissue #zebrastrong #zebra #heds #ehlersdanlos

1 year ago | [YT] | 0

hEDS Up

Twins with hEDS and 4’10” looks #unique to say the least! #hEDS #EDS #hEDSUpwithme #hEDSUp #twins #pregnant #momof6 #huge #funny #ehlersdanlos

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1 year ago | [YT] | 0

hEDS Up

https://www.facebook.com/share/sG7cZfFDaeBrfUy6/?mibextid=WC7FNe

1 year ago | [YT] | 0

hEDS Up

#MCAS #MCASawareness #EDS #hEDS #hEDSUpwithme #hEDSUp #dysautonomiaawarenessmonth

1 year ago | [YT] | 0

hEDS Up

We are so hooked on a single narrative. #hEDS is so much more! #ehlersdanlossyndrome #hEDSUp #hEDSUpwithme

1 year ago | [YT] | 0

hEDS Up

This is my serious issue right now

1 year ago | [YT] | 0

hEDS Up

This resource would have been amazing in my life! Not only having 6 children, including twins, and being an Obstetric nurse. This is major news for OB/GYN patients

1 year ago | [YT] | 0

hEDS Up

Check this one out

1 year ago | [YT] | 0

hEDS Up

Great resource

1 year ago | [YT] | 0