Day 11: Nature/Environment
I try to go for a daily walk with my husband (health and weather permitting) and my favorite part is spotting the little wild bunnies in our neighborhood. There’s also an orange outdoor cat that I’ve nicknamed Irn Bru.
Being outdoors is a challenge for me. I’m allergic to so many things like grass, trees, lilacs, THE SUN. Yes-I have a sun sensitivity. I break out in hives. I have to wear sunscreen and/or wear protective clothing.
But I do still love the ocean. I was lucky to attend my friends’ commitment ceremony on Martha’s Vineyard. That’s where this photo is from. It was a gorgeous day.
In addition to my allergies/asthma, I’m very sensitive to temperatures because of postural orthostatic tachycardia syndrome. My blood pressure runs very low and my heart rate runs high. Combined with EDS and one of my medications that decreases the amount I sweat, it’s very difficult to regulate my body temperature. I overheat very easily. I do best with temperatures in the 60s.
Honestly, I enjoy nature the most when David Attenborough narrates.
Day 12: Nurses/Doctors
I’m lucky to have several medical providers who treat me with great respect and care. I’ve also had truly awful experiences with some doctors and nurses. The majority of my medical care providers are excellent and that’s why I travel from NH to Massachusetts for my care; the staff members at Beth Israel Lahey Health are professional and kind.
Off the top of my head, I currently see specialists in the following fields: allergy & immunology, cardiology, gastroenterology, podiatry, orthopedics, physical therapy, otolaryngology, psychiatry, neurology, neurosurgery, dermatology, pain management, gynecology, cancer, and urology.
I feel like my physical therapist is one of my closest friends. I’ve been seeing her every week for over a decade. When I got married, I almost felt like I should invite her! Having her as an ally is wonderful. She has taken a keen interest in Ehlers-Danlos syndrome (EDS) and is always keeping me in the loop on new specialists who are aware of EDS. Her comprehensive documentation of my health and treatment makes it so much easier for other specialists to get a handle on my case.
Day 13: Medical Appointments
I’m pretty tired today because I just got home from my last medical appointment of the week. I had five appointments this week. I’m exhausted.
Being a patient is like a full-time job for me. I like to take notes and make sure that I get any questions answered. Virtual appointments have definitely made my life easier! I hope that we don’t lose them.
Above are some “Hospital Glam” shots of me (do yourself a favor and check out Karolyn Gehrig!) at various medical appointments. They help me reclaim the space.
Day 14: Explaining EDS
Day 15: Isolation
As mentioned in an earlier post, I missed three months of junior high when I was a kid because of pneumonia. I’m used to isolation.
After most surgeries, I’m stuck at home for a month or so. But I’m also stuck at home on a regular basis because my body just refuses to cooperate. Whether it’s a migraine, gastritis flare, or postural orthostatic tachycardia syndrome (POTS) incident, I spend I lot of time alone.
Fortunately, I’ve got my unofficial emotional support cat, Candy, and my husband. Plus all you lovely people on the internets!
Day 16: Coping
I slept most of yesterday because I worked four hours in person at the library the day before and it took a lot out of me. I ended up with a horrible migraine. But thankfully, I have my cats (like little Ada in this photo) and my husband who help me cope. Other things that help me cope are therapy, doodling, connecting with friends and family, reading, watching TV/movies, keeping a journal, and not feeling guilty when I need to rest.
Day 17: Childhood
I was sick a lot. I had my first ear infections at age 2. I had pneumonia twice around age 8, which is when doctors found that I was missing part of my pericardium. My allergist spotted it (or lack of it) on an X-Ray. I spent a good deal of time seeing cardiology specialists because at the time, I was one of only two documented cases of people born without complete pericardia (wall around the heart).
When I wasn’t suffering from respiratory infections, my childhood was pretty normal and excellent. I took ballet and was in Campfire Boys & Girls. My local public library was my favorite place to visit. I spent many hours in books. I was in the “gifted” program in elementary school.
My joints crackled and popped and subluxed, but no one knew why. I’m kinda glad I didn’t know what I had because my life might’ve been more protected. I relished being latchkey kids with my older brother, who was my idol.
Things didn’t really start to fall apart until age 12. First surgery. First migraine. Insomnia. POTS episodes had started earlier. I think high school would have been easier if I had known because I could have worn appropriate braces and used mobility aides.
Day 18: Words to Parents
My EDS is not your fault, Mom. I love you so much! You and dad did everything you could for me. I have all your cardiology notes. I know how thorough you were! It must have been scary not knowing what was wrong with my heart when I was little. You don’t have to worry anymore because I have the best partner and doctors taking care of me.
Day 19: EDS In One Photo
I think this lovely photo, by Jessica Cronin Photography, from my wedding day works to sum up EDS in one photo. My face is chubby from a month of prednisone (intractable migraine) and I’ve got my trusty rollator all decked out with blue roses in honor of Twin Peaks. And I “don’t look sick,” but my maid of honor was responsible for knowing where my bag of abortive/rescue meds was at all times.
I was lucky to make it through the wedding without any major problems. It was a gorgeous day at the deCordova Sculpture Park and Museum and I felt like a princess! And that is pretty much what EDS is: You don’t necessarily look sick, but man, so many things are just falling apart under the surface. (I almost picked a gnarly post-op photo of staples and stitches in my knee, but who wants to see that?)
Day 20: Behind the Scenes
Here is a photo from the last time I was hospitalized. I had Type A flu in January/February 2020 and got very sick. My immune system sucks. I developed ketoacidosis.
When I was released from the hospital, they told me to wear a mask to protect others from getting the flu and to protect myself from getting more sick.
I was in the Emergency Department more recently for an intractable migraine (I think in December?) and it sucked because I was all alone. Usually my husband is by my side as my advocate. I wish there was a better way to treat intractable migraines than to send me to the ED when I need IV meds/fluids/infusion. Unfortunately, my hospital doesn’t have an infusion center that can handle folx with postural orthostatic tachycardia syndrome and episodes that look like seizures. Sigh.
Anyhow! A big thank you to Karolyn Gehrig and expressing myself through Hospital Glam!
This Charming Amy 
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