Ehlers-Danlos Awareness Month

May is Ehlers-Danlos syndrome (EDS) Awareness month. The EDS Society has issued a social media challenge to raise awareness. Today is day five and I’ve been making my posts on Instagram. Today’s got rather lengthy, so I figured I may as well start sharing them on the blog as well!

Day 1: This Is Me

Days 2 & 3: Diagnosis and Symptoms

I was born was EDS. Check out how I’m sitting in this photo. It was great for my knees! I was diagnosed as being hypermobile when I was in my 20s but I wasn’t diagnosed with EDS until age 40. I had been diagnosed with and cleared of cancer before I received the EDS diagnosis. Heck, I didn’t know what EDS even was until I was probably 39.

Some of my EDS symptoms include long arms (my arm span is 5’7” but I’m 5’3”), long fingers, migraines, joint instability and subluxation, gastritis, gastroparesis, eczema, osteoarthritis, chronic pain, scoliosis, chondromalacia, impingements, muscle spasms, pericardial malformation, and more.

Day 4: A Day With Ehlers-Danlos Syndrome

Last night I got to sleep around 2 AM after a gastritis flare. I’m seeing my gastroenterologist next week for this latest flare-up. I woke up at 2:30 PM when my husband woke me up. I was exhausted. I got up and made some toast with vegetarian butter and had some iced coffee. I took my three “morning” pills and sat on the couch with my work iPad.

I ended up working from the couch for three hours with this cat on me. She makes my knees feel better and our couch reclines and even has lumbar support. Now it’s almost 7 PM and I’m due to take more meds. Meds again at 9:15 PM and then 11 PM. I’ll try to take a shower, but my husband will have to sit in the bathroom with me because my postural orthostatic tachycardia syndrome is acting up and I passed out yesterday after I showered. Oh, I also have a migraine.

The husband and I will probably watch a movie or some TV later. I’ll read some of the new Kazuo Ishiguro before bed. I feel down because I didn’t go for a walk today. And because I slept so much. And because I have no motivation. The gastritis/gastroparesis flare severely limits what I can eat. I’m scared that the ulcer in my stomach is getting worse. I have to eat a low-fiber, low-density diet. No raw fruits or veggies. 😢 Now I’m just on a rambling rant. At least I got to rest today. On Thursday I have 4 medical appointments. 🥺

Day 5: School/Teachers

Here I am in my awesome marching band uniform! I couldn’t handle marching with the glockenspiel because my shoulder would dislocate so the marching band teacher created a percussion pit! Whenever we marched in parades, I would play the cymbals instead.

But not all of my teachers were so accommodating. I remember a math teacher being mad because I couldn’t take a test because I couldn’t write. I had a bad dislocation of my right shoulder and my arm was in a sling. I was severely underweight and everything was always falling off me. 😂

I had a lot of “tendonitis” and dislocations in high school, but junior high was the worst. I was out of school for three months (pneumonia) and had what would be my first of three sinus surgeries. My parents hired tutors so that I wouldn’t fall behind at school. Three months of medical isolation with no internet prepared me for 2020.

When it came to school, I always got my work done early because I never knew when I would get sick. I had my first loss of vision migraine at age 12 after gym class. I never knew when my body would fail me. I always got all A’s and B’s. I was in National Honor Society and took Advanced Placement classes. I did a million extracurricular activities. In college, I was always on the Dean’s list. Now, I don’t know how I did it!

The answer: supportive family, friends, and medical providers.