I was invited by Annie Lainey of youtube fame to do this tag and i’m really excited about it. My goal for this EDS awareness month is to think outside of the box.
PART 1: WHAT IS EDS IS LIKE ON MY BODY #ThisIsMyEDS
- Introduce yourself: name, pronoun(s), and EDS type.
- Hi, I’m Emet, I use he/him/his pronouns, and i have an unspecified type as I have developed heart issues and other symptoms inconsistent with my original diagnosis of HEDS and am being re evaluated
- First things, first, in one word, how are you feeling today?
- For those who don’t know, can you explain EDS [medically] in a sentence?
- There is a DNA mutation in the structure of your collagen (the cement in your body) it becomes too lose and things cant hold together.
- What’s your favorite analogy for how EDS feels? Or what EDS is like?
- EDS for me is knowing that one day you are hanging out with your friends, and the next you are in the hospital with a serious infection. It’s unpredictable, its wild, and you never know where it will hit next. Its like a bad surprise party.
- What are your symptoms and comorbid illnesses/conditions?
Frequent subluxations in my extremities, hearing loss, dry eyes, tooth decay, dry mouth, mitral valve regurgitation, tricuspid valve regurgitation, pulmonary hypertension, asthma, gastroparesis, IBS-a, bowel incontinence, bladder incontinence, uterine and vaginal prolapse, neuropathy, chronic pain, muscular atrophy, blood sugar dysregulation, dysautonomia, loss of balance, headaches, cranio cervical instability, tethered cord, drop foot
- How does EDS impact your daily life?
How often are you in the hospital?
- I’ve had 2 admissions in 2017, 4 ER visits
- What physical disabilities impact your daily life?
- Neuropathy, muscular atrophy, dysautonomia, gastropariesis, CCI, and hearing loss effect me the most
- Devices you use for your survival?
- Wheelchair (both power and manual with power assist), feeding tube, service dog (not a device perse) continuous glucose monitor, PICC line for hydration, electric bed, hoyer lift, bath lift, neck brace, and AFOs
- Do you work?
- I am currently unable to find employment, and I am on medical leave from graduate school. I am in the application process for SSDI.
- Are you often on bed rest?
- I am well enough now that its not often, but I was almost all of last June and July
- How often are you injured?
- My right wrist is permanently subluxed, and my ankles are constantly rolling, so I would say constantly.
- How do you try to prevent injuries (accessibility needs)?
- My wheelchair and lifts help me to prevent dislocations, as well as my aides in a supervisory role, and braces
- How does it impact you emotionally, your mental health?
- Its hard because I can become isolated, especially at times when I am in the hospital or homebound and I get lonely and depressed. However, I am generally a positive person with very well controlled depression and so i have not been impacted as heavily as I could be