I was always “clumsy,” tripping over my feet and spraining my ankles when I was younger. I had weird rashes, and handwriting was difficult and painful (and still is).
In my 20s, vertigo, migraines, dizziness, nausea, asthma, and gastrointestinal (GI) symptoms set in.
A gynecologist told me I had a tilted uterus. Labor and delivery were extremely difficult. I also had several miscarriages, pre-term labor, and three c-sections with high-risk complications. My two youngest daughters were preemies.
I worked out in the gym, took fitness classes, and ran, but it was very difficult and excruciatingly painful.
My joint problems increased into my 40s, and walking became more difficult, especially after I was finally diagnosed with Crohn’s Disease. I quit teaching because I couldn’t stand all day. I transitioned into freelance writing and was quite successful but was forced to give that up when I couldn’t type or sit up for very long.
I was declared permanently disabled in 2014 after three years of being denied and filing appeals. I moved on as best I could, used a mobility scooter, and endured lots of ER visits and hospitalizations. My tests were always “borderline” or “inconclusive.” Some physicians scratched their heads, fully believing something “strange” was going on, others suggested it was “all in my head” and I’d feel much better if I could just get some “cardio” or “run up a flight of stairs.”
Yes, that’s what they said.
When my daughters started showing symptoms – migraines, rashes, tummy troubles, asthma, random high fevers, and sore joints – our pediatrician fully believed them and sent us to a geneticist at Children’s National Medical Center in Washington, DC where both were diagnosed with POTS and Hypermobile/Classical Ehlers-Danlos syndrome.
During one of our many visits, our geneticist tested me and confirmed that I also had the same conditions as my daughters. I maintained after that for several years until early 2021 when I was hospitalized more often and practically bedbound. My daughter Elise graduated college in early May and I barely made it to see her get her degree. But I got there! My son got his master’s degree a few days later. My youngest daughter was still in college.
Things turned deadly on May 22, 2021. I was extremely sleepy, my left hip hurt, and I couldn’t sleep. We called 911 and everything turned life-threatening – fast. As soon as I hit the ER, the ER doctor ordered a CT scan which revealed a perforated colon from undiagnosed diverticulitis. I was losing consciousness and slipping into septic shock, I was within one hour of death. I was intubated and my blood pressure had to be stabilized so I could make the flight 70 miles east to Baltimore to a special trauma hospital where a team of skillful colorectal surgeons saved my life. I had a temporary colostomy, and half of my colon was removed. I couldn’t walk and had to go to a special rehab hospital.
Eventually, we discovered that after having half my colon removed, my mobility and pelvic floor strength improved! After a year of intensive physical rehabilitation that included aquatic therapy, we donated my mobility scooter. My colostomy was successfully reversed in December 2021, and I started walking more and more. Now I walk 5 to 8 miles a day!
I’m in the gym again three days a week for strength training and swimming. Swimming is my pain relief, my morphine! I can swim and the pain relief lasts for hours after. I’m strengthening my muscles as much as I can to stabilize my joints, especially as I grow older. I’m 60 now. And, to help my severe osteoporosis that developed because of Prednisone and lack of mobility all those years. I no longer use Prednisone.
I’m really enjoying life with my precious family. I even started writing again, part-time. I have my difficulties, my bad days. I rest more, save my spoons, practice self-care, and get good sleep with pillows and accessories like my trusty heating pad. I pared down my medications from 14 to 5. I tell my doctors to only give me what we know WORKS for sure. And I give myself a daily injection of Forteo for my osteoporosis.
Hypermobility isn’t kind to us as we grow older. Working in the gym helps my balance and strength, and swimming helps with pain relief, cardio, and endurance. Walking just feels good, after so many years of not being able to walk far. It helps my mental health to be outdoors.
I see my counselor once a week. I have a lot to unpack after almost dying of sepsis. But I’m moving forward, never losing hope, and I keep working on getting stronger. My personal hashtag is #gettingstronger4mykids. My girls are doing okay, despite their surgeries and pains, they moved on to college and careers, and they keep on keeping on, like me.
I’m hoping to walk and swim 250 miles this May to shine a light on Ehlers-Danlos syndrome as part of The Ehlers-Danlos Society’s Walk & Roll Challenge!
