Little Spoonie 🦓🥄

Just keep swimming 🐠#spooniewarrior #behcetsdisease #spoonies #patientadvocate all thoughts are mine alone, for medical advice please see a healthcare provider

[StuffThatWorks @StuffThatWorks1]

💙May 20th is Behcet's Disease Awareness Day! 💙
Join the community, share your knowledge and
participate in a global, patient-driven effort to help figure out which treatments work best💪
https://t.co/j8DGkiZL51

#BehcetsWarrior #Behcets #BehcetsDisease

[Little Spoonie 🦓🥄 @behcetsspoonie]

@medicalmystery2 Yes! Advocate for yourself. If you have a heart rate watch or device show them the readings!

[Little Spoonie 🦓🥄 @behcetsspoonie]

@chronicparent30 Chair aerobics and chair yoga 💕. I haven’t been able to exercise for so long but I can actually tolerate it! It makes me feel great and also tired without being dead

[Little Spoonie 🦓🥄 @behcetsspoonie]

@medicalmystery2 Just wear the sunglasses haha. Mine have stayed sensitive for yearssss

[Little Spoonie 🦓🥄 @behcetsspoonie]

@medicalmystery2 No because my condition fluctuates so much. One day I’m ok, another day I’m not able to do anything. If I can still function, I wouldn’t consider myself disabled even if others might 🤷🏻‍♀️

[Little Spoonie 🦓🥄 @behcetsspoonie]

@ElsewhereWren Colchicine

[Little Spoonie 🦓🥄 @behcetsspoonie]

@medicalmystery2 That was the exact reason that I stopped seeking treatment & a diagnosis. I became so frustrated that I just quit going all together. Are you in a learning hospital?

[Little Spoonie 🦓🥄 @behcetsspoonie]

@medicalmystery2 Same thing happened to me Saturday. 4 hours out and then I had trouble just walking to my car! Knocked out the rest of the day and it was only like 5pm

[Little Spoonie 🦓🥄 @behcetsspoonie]

@fibroremedies Try to walk (at a slow pace) or do exercises in bed, just enough so that I don’t get too tired or hot. Otherwise I’ll regret it!

[Little Spoonie 🦓🥄 @behcetsspoonie]

@_CrazyWonderful My EDS classmate said they ended up being so addicting that it was detrimental for her. She uses medical cannabis (so does one of my EDS professors) and they swear by it.

[Little Spoonie 🦓🥄 @behcetsspoonie]

@medicalmystery2 You’d be surprised how many autoimmune conditions can’t be distinguished by labs 🤷🏻‍♀️ if they haven’t figured you out yet, definitely look into rare diseases. If you ever want to share you can PM me 💕

[Little Spoonie 🦓🥄 @behcetsspoonie]

@katesvanityblog 💕

[Little Spoonie 🦓🥄 @behcetsspoonie]

@medicalmystery2 Mine was symptom based. For a lot of rare diseases like mine, they don’t know they cause so they can’t just do labs. It’s a clinical diagnosis based on all my symptoms. One of the tests is a pathergy test (pin prick on your skin or mouth) to look for a reaction

[Little Spoonie 🦓🥄 @behcetsspoonie]

@medicalmystery2 For yearsssss (16) I was undiagnosed because of that! Once I switched doctors and had someone actually listen to me, I was diagnosed in 1 day! I knew I had an autoimmune disease because I dealt with it every day

[Little Spoonie 🦓🥄 @behcetsspoonie]

@queenofnodx Stuck on bed rest. All bruised up from nurses who don’t know what they’re doing. You?

[Little Spoonie 🦓🥄 @behcetsspoonie]

@GiantTortoise7 B12 helps 💕

[Little Spoonie 🦓🥄 @behcetsspoonie]

@Fibromania1 😔👎🏼

[Little Spoonie 🦓🥄 @behcetsspoonie]

@emaliesays 💕

[Little Spoonie 🦓🥄 @behcetsspoonie]

@helen_a15 It’s a “lazy” thing

[Little Spoonie 🦓🥄 @behcetsspoonie]

@katesvanityblog I’d rather go anywhereee else but as soon as I say “chest pain” every other doc says I have to go to the ER 😑