Living Chronically Blessed

Ehlers Danlos Syndrome Awareness Month was May, but due to the state of my health, I wasn’t able to get my EDS awareness blog posts up in May. That’s chronic illness for you, but I’m okay with the delay because now I get to make June EDS awareness month as well! I can’t pass up this opportunity to talk a little about this disease and what it means to me personally. EDS or Ehlers-Danlos Syndrome is my umbrella disease and affects me 24/7, 365. You can read all about EDS and my journey fighting this beast of a disease here. The EDS community was loud and proud on social media in May, so it feels right for me to join in on bringing awareness to EDS. I have decided to take on the EDS Awareness Month Challenge created by @tayler.danlos.syndrome on Instagram. She created 31 questions intended to be answered one a day for the month of May, but instead of me answering a question a day, I have decided to answer all 31 questions here and now! So, here we go!!

1. What type do you have? I have the hypermobility subtype.
2. When were you diagnosed? They started questioning whether or not I had EDS at the age of 16, but I was officially given the diagnosis at the age of 18.
3. Comorbidities? I have 30 additional diagnoses, you can find them all on this post.
4. How hypermobile are you? I have yet met a doctor or PT that has seen another patient with as much neck and/or hip range of motion as I have. My knees and elbows are considered moderate for an HEDS patient, but I guarantee you that I’m more mobile than you. My fingers and wrist are pretty dang hypermobile. For reference, my doctors often pop my hips out when evaluating me, because of how severe my hypermobility is.
5. Are you “stretchy”? My skin definitely has some pull with it, but not too bad. My scars, on the other hand, struggle to remain closed and are extremely atrophic.
6. Mobility aids? Magnolia, my service dog, is my main mobility aid. There have been times where I have used wheelchairs and walkers.
7. Pain Management? On high pain days, I have knee braces, wrist splints, tape, ankle splints, back braces and finger splints at my disposal. I also use essential oils, meditation, daily PT, salt baths, weighted blankets, topical creams, massage, and deep breathing/relaxation techniques. I sleep with a travel neck pillow to prevent neck subluxations, 3 other pillows, 2 heating pads, 10 ice packs and if needed a muscle relaxer. Traveling I use compression socks, a back support pillow, and a neck support pillow as well as a cushion to prevent the seatbelt from rubbing my PORT. I also get steroid injections in my joints and botox injections for my migraines. Dog cuddles help too.
8. Surgeries? I’ve had 8 surgeries to date and currently have 6 surgeries pending.
9. Hospital Stays? I’ve been hospitalized 10 times. 7 of the 10 hospital stays have been in the last 4 years.
10. What is “your normal”? Medically speaking an average day for me looks like…12 hours of sleep, 80oz of water, infusion of a liter of saline, 4-5 laxatives, nausea meds, 19 daily pills, 30-45 minutes of PT, average of 2 doctor’s appointment’s (average of 8 a week), 6 nasal sprays, allergy shots, osteopathic manipulation aka putting my joints back into place, PORT care, naps, ice pack/heating pad breaks, stool diary, urine diary, migraine diary, food diary, pain diary, 8 patient portals, dealing with the pharmacy, dealing with specialty and compound pharmacies, medication refills and organizers, service dog training, insurance, patient paperwork and surveys and managing 30 care physicians.
11. What is your flare like? A flare for me usually involves severe fatigue, not to be confused with “being tired.” If you’ve ever had anesthesia and it’s impossible for you to keep your eyes open, it kind of feels like that but also involves this aching that reaches your bones. Pain is a major component for my flare days. The pain varies from specific joint pain to generalized joint and/or muscle pain. Migraines are almost always present on a flare day. I can’t forget the nausea and IBS symptoms. It feels like you have the flu, but my flare days come every 3-4 days, so I have the flu feeling weekly. Depression and anxiety usually accompany my flare days.
12. What specialists or types of doctors do you have? (2) Primary care, (3)Orthopedic Surgeon, (3) Medical Geneticist, (2) Dermatologist, (2) Sports Medicine and Rehabilitation, Pharmacogenomics, (2) Endocrinology, General Surgery, (2) Electrophysio Cardiologist, Otolaryngology, Neurology, (2) Neurosurgeon, Neuro-Ophthalmology, Rheumatology, Physical Medicine and Rehabilitation, Oral and Maxillofacial Surgeon, Urogynecology, Gynecology
13. Funniest EDS Story? Going from the pediatric world to the adult world, as I call it, was/has been one of the hardest things I’ve ever done in my life. Among many things, I went from being the oldest person in the waiting room to the youngest by about 40-50 years. It used to really discourage me, and sometimes it still does, but it has become quite comical these days…I’ve never been hit on or asked out as much as I do when I’m in a waiting room filled with 80-year-old men. I lost count how many phone numbers I have been given at this point, but it is quite impressive. One of my favorites was this gentleman who was recovering from a major heart attack and he happened to have several appointments at the same time that I did. The poor guy couldn’t quite understand why I would never call him, he was very nice, persistent, but nice. My nurse, however, kept witnessing what was happening every time I was in the lobby. The gentleman also had very poor hearing, so he yelled when he talked, aka the whole office got to hear our conversations. My nurse was very protective of me, I called him Papa Leeroy, because he was so awesome, but one day the persistent gentleman grabbed my arm when I got up to go in for my appointment and Papa Leeroy came over and acted as if I was his daughter and there to visit him, he grabbed me and lead me back to my room, but the persistent gentleman was so scared that Papa Leeroy was mad at him that he waited until my appointment was over and then apologized to me.
14. Worst doctor experience? I had a GI tell me that my pain was “most likely” real, but there was no answer as to why and even if there was an answer it wasn’t worth the time or money to figure it out. He concluded by telling me that I should “just keep pushing along.”
15. Best doctor experience? I had a GI that would spend hours with me and he not only knew my health issues inside and out, but he spent the time to get to know me, my dreams, my crushes, my grades, and my friends and family. I had to have a procedure with him, but he made me promise that before I went into the operating room I would hand him a pre-written love letter to my celebrity crush. True to his word my GI came into my preop room in full surgery attire and asked for the letter. I didn’t know how lucky I was to have him as a doctor until he retired.