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Friendship and #ChronicIllness

And with that picture . In a little way I felt like I was there ..

I seriously have the greatest friends . Do to severe GI symptoms I had to miss out on my friends “ Gothic Plant “ themed birthday party I’ve been looking forward to for months

And All night I was getting pictures of the party on our group chat .

My friend made me one of the
“ grave yard terrariums “
( on her birthday! 🥺❤️❤️ )
And yes my tombstone is yellow , sparkly and covered in unicorns 😂❤️. My real tombstone ( when I’m 90 ) better be this cool . 😂❤️

They sent me a pic of my graveyard 🪦 . ( which was delivered to me by an amazing friend who lives close )

And then they sent a pic of my graveyard . With everyone else’s .

And my little poetic heart kind of burst 🥺❤️.

Because being chronically ill .
Your constantly canceling plans you don’t want to cancel . And constantly feeling like the worst friend ever .

And I’ll be honest through my life ( Especially when I was “dying “ in high-school .
id try not to get to close to people ( which is hard when you are a raging extrovert who thrives off of human connection . )

Because I didn’t want to be a disappointment.

My warped thinking was. ( and I have to admit sometimes still is )

You can’t be mad your friend canceled on an activity if you didn’t really care if they were there in the first place 🤷🏼‍♀️.

But that little act , of having my terrarium in the photo .
In a little way it felt like I was there …
If only in spirit. ❤️

I seriously have the most loyal friends in the entire world .

#smileon🐷 #spoonie #Friends #selfworth #ChronicIllness #spoonie #beafriend #loyal #christianblogger #graveyard #greatestfriendsever #MightyTogether #CVID #RareDisease #UCTD #connectivetissue #warrior

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Question for fellow warriors

Does anyone else ever have pain after being touched? Went to a new rheumatologist today - didn’t hurt during the exam, but the pain later on was awful!!! Still there today, I can feel each joint she squeezed and each one she rotated…
#Fibromyaliga #connectivetissue ????


How many doctors does it take to keep you healthy?

How would you describe your medical family? Are they recurrent (you see them periodically) or transient (just for a couple of consultations or specific procedure)? For me it's:

1 Internal Medicine Doctor (Primary care)
1 Naturopathic Doctor
1 Dysautonomia Cardiologist
1 Connective Tissue Cardiologist
1 Dysautonomia Neurologist
1 Neuromuscular Neurologist
1 Podiatrist
1 Physical Therapist
1 Occupational Therapist
1 PM&R Doctor / Physiatrist
1 Endometriosis OB-GYN
1 General OB-GYN
1 Geneticist
1 Rheumatologist
1 Dermatologist
1 Upper GI Gastroenterologist
1 Otolaryngologist
1 Dentist-Endodontist
1 Orthodontist
1 Allergist-Immunologist
1 Orthotist
1 Behavioral Therapist
1 Endocrinologist
1 Vitreo-Retinal Ophthalmologist
1 External Disease and Cornea Ophthalmologist
1 General Ophthalmologist
1 Optometrist

1 Audiologist
1 Oral & Maxillofacial Surgeon
1 Gastrointestinal Surgeon
1 Sleep Medicine Doctor

#EhlersDanlosSyndrome #AutonomicDysfunction #LivingWithPOTS #ChronicIllness #Disorder #RareDiseases #RareDisorder #RareDisease #RareCongenitalDisease #MastCellActivationDisorder #connectivetissue #Endometriosis


Anyone with EDSIII have any experience taking CoQ10 or Vitamin C 1500mg? I’ve read a couple articles about using it for hEDS. Any thoughts? #EhlersDanlosSyndrome #HEDS #Dysautonomia #EDS #connectivetissue #POTS