About Me

Through Tumblr, Instagram and Facebook I have connected with so many amazing EDS Warriors and other Spoonie Chronic Illness Fighters and through those amazing internet friends I have learned so much about myself, about illness and about the community. I want to give back as much as I can and spread awareness about these not-so-Rare Diseases and Chronic Illnesses. This Blog is where I would like to share my story and journey. 

Im 22, 6’4,  Disabled, Part Time Wheelchair User, Animal Lover and Self Proclaimed Professional TV Viewer (Addict) I primarily live on a chaise and a hospital bed. 
I began a whole new  medical adventure in 2014. 
It has been a mystical medical mystery tour of doctors, diagnosis, and the realm of the long-term invisibly chronically ill.

I always knew there was something different about me. that kept me up every night of my childhood and beyond, caused all sorts of ailments, prevented my having a “normal” life. Well thanks to the amazing and supportive spoonie community I have found out why I was always so uniquely klutzy me and finally been officially diagnosed. 

So what’s wrong with me? I have racked up quite a list;

Ehlers-Danlos Syndrome Classic/Hypermobile type (EDS), 
[Constantly subluxing joint & vertebra, severe pain & so much more]
Complex Regional Pain Syndrome (CRPS) 

[Severe allodynia and instability in left arm/ shoulder/ Clavicle]
Postural Orthostatic Tachycardia Syndrome (POTS) 

[Heart Rate over 120 on standing, dizzy, blood pooling in extremities]
Mast Cell Activation Syndrome (MCAS) 

[Allergies to, chemicals, foods, spores, life]
Gastroparesis (GP) 

[Delayed Gastric Emptying/ Slowed Motility, Severe Pain, Nausea, Bloating, Gas, GERD]
Occipital Neuralgia (ON) 

[Occipitol Bone movement pressure on nerves L&R]
Occult Tethered Cord (OTC) 

[Spinal Cord Tetherd, possibly near transitional L5 vertebra]

I also have Cranio-Cervical Instability (CCI) which is my Skull and Atlanto Axial Instabitly (AAI) and iv'e been told I need to be fused from O-C2, I also have C3-C4 cervical instability (fusion recommended as well), C5-C6 spondylothesis C7 Over rotation, T9-10 herniated/bulging disc, as well as all kinds of lovely early stages of spine disc degeneration and central canal cervical spinal stenosis. As well as other mystery GI ailments and normal EDS instabilities. 

See More on The Master List Health & Therapy Overview

All of the above conditions are extremely painful but I do not take pain medications..  I’ve tried for years the alternative route and in 2014 with the return of state insurance I  tried my round of MDs again, with more results then the past since now we know what's wrong, but there are no cures or known treatments right now so I do what I can. 

When I can afford it I am gonna try Comprehensive Prolotherapy Treatments 
Video: What is Comprehensive Prolotherapy by Dr. Houser, 
Caring Medical, Fort Meyers, FL
and find a great Homeopathy Dr. and Acupuncturist/ Chinese Herbalist, cause that's really the way to go. 
I've used Medical Cannabis for the past 6 years to help alleviate many of my symptoms and it has been a miracle med in so many ways, but as with everything tolerances build and I now need the help from some outside chemical medications for certain more severe issues, Thankfully Cannabis works synergistically with them all especially the CBD oils and topical oils I use religiously

I've learned to go with the flow and stop when my body says stop. This blog is my collection of stories, thoughts, and my overall journey through the American medical system. Trying to help myself and whomever else I can.

~Tall EDS Chick