That’s what I feel like at all appointments. My personal favorite is having to fill out to what equates to a college application complete with references , only to be asked the same exact crap by the nursing assistance, who then hands the folder to the doctor , who then asks you the same set of questions for a third time . No wonder I have chronic migraines. I’ve always been self sufficient when it comes to medical care as my prior history made it a necessity, not an option. I always felt kind of like a medical guinea pig and most things that were supposed to work on your average patient didn’t go as intended with me. Everytime I see a whopping three spaces for past medical history and surgeries on the doctor’s sheet I sigh and roll my eyes. I really need to make a spread sheet.
Let’s start from the beginning and hopefully you can follow my bread crumbs ….
1984 – I had my first surgery at 18 months at Mass General to address an inominant artery , apparently my aorta was crushing my trachea which not only caused its own breathing problems but exacerbated by asthma. I was also allergic to everything. EVERYTHING.
Kindergarten – tonsils/adenoids. This meant no tire swing for me at recess. Bastards.
Fourth Grade – random growth removed from my throat along with a questionable mole on my arm.
Fifth Grade – Unfortunate softball accident ended in my ring finger joint being graphed and replaced with a piece of my rib. Straight science fiction type stuff. Children’s Hospital had to correct the necrosis that had developed and the fusion was the only way to keep the finger, can’t bend that finger all the way but it’s there.
Junior High I got my appendix out, which luckily for me decided to flare up while I was babysitting my little brother, my dad was away on a work trip and my mom was working on the ferry.
In high school I was diagnosed with endometriosis which runs in my family, I had that worked on twice along with multiple orthopedic problems with ganglion cysts, bunions and bunionettes. *I feel pretty*
I’ve had my sinusus done two or three times, my nose is so narrow it was collapsing, constant sinus infections,
My son ended up being a c section, healing from that was not an easy ordeal, adhesions and hypotrophic scars galore.
I’ve had my shoulder done twice. The first time was from a Humeral avulsion of the glenohumeral ligament (HAGL). Avulsions are yummy. I believe that thanks to the Ehlers Danlos causing all kinds of stretchiness that it allowed my ligament to stretch beyond where it was supposed to , creating the tear. The following year I had a debreament of my subacromium. Because all the cool kids are doing it …. My shoulder is still crackly and sore but I don’t have the icepick feeling or electric shocks anymore so its an improvement.
You could say that I’m use to being the ‘sick kid’. Nothing normal happens to me. I was in and out of the hospital alot as a kid because of my asthma or an allergic reaction. My bizarre allergies? As a kid I was allergic to tomatoes, strawberries, milk, soy, apples, potatoes, peaches, plums, asparagus, eggplant, latex and bees. I’ve grown out of most of those with the exception of tomatoes, bees and latex. Which is fine by me since tomatoes smell like barf to me anyways. Epi Pen is my friend.
So, what is Ehlers Danlos Syndrome? EDS is an inherited disorder of the collagen – the glue that holds your body together. EDS is not an autoimmune disorder like Lupus, it has to do with the functioning of the collagen itself. EDS is not contagious, and depending on the gene expression , some variants are autosomal dominant while others are recessive. Autosomal dominal means you only need one parent to pass on the gene, as is the case for me. Although I am the only one who has been officially diagnosed with Ehlers Danlos, my mom would definately pass the test. While there are officially six different subtypes (expressions? ) of EDS, I was told that they are shying away from fitting patients into particular groups because of cross expression. From the Ehlers Danlos National Foundation the six types are:
Some of the subtypes have genetic markers, like the vascular, however hypermobility is diagnosed by past medical history and patient presentation. I was evaluated with several methods, skin laxity and the Beighton Score being a few, and all scores I tested well above average and usually grossed out the doctors. Having Ehlers Danlos Syndrome goes far beyond cool parlor tricks and being a life long klutz. Defective collagen can have life threatening implications, and at the very least compromise your quality of life.
Although Hypermobility (Type 3) is not necessarily life threatening in and of itself, it is considered the most painful due to chronic tears, dislocations and breaks. Usually you will find various fractures in different stages of healing, scar tissue build up from multiple injuries, easy brusing and even things like autonomic nervous system dysfuntction. Or as I call it “what goes up must come down” . Due to everything being so stretchy in my body (including veins etc) my blood doesn’t flow properly and I experience orthostatic intolerance. Anytime I change positions from sitting to standing, laying down, etc, I see sparkles and almost pass out, my extremities go numb and I get really dizzy. I’ve been battling chronic migraines and ringing ears. Unfourtunately due to my paradoxical reaction to meds or meds just not working, there is very little doctors have found that actually helps me. I take meds for my ADHD and anxiety which help to a degree, blood pressure meds which help, but other than that nothing has helped me and I’m in chronic pain which is exhausting. The blood pressure meds have helped with the reynauds to an extent, my hands and feet don’t look like they’re from a corpse anymore, but they do still change colors frequently. I also battle GI problems which no one has been able to figure out, I’ve had various barium swallows, motility tests, I’ve eaten glow in the dark eggs, nothin. I have a sliding hernia but nothing they are terribly concerned with. My choking episodes had been helped with a double dose of protonix, but that stopped helping. I’ve been through every proton pump inhibitor , even ones I had to battle to get insurance to cover, nothing works. There was talk of suspected eosonophilic esophagitis, but so far unable to identify the offending trigger. I even tried gluten free, sugar free, dye free.
So what is a walking talking science experiment to do? Most of the time I feel like my doctors appointments are a waste of my time and co pay because I almost never feel like my issue was addressed and end up leaving frustrated. However I know that in my journey so far I have helped others get diagnosed and introduced local doctors and ER staff to Ehlers Danlos. It helps put a name to my oddities and sometimes changes my treatment as far as meds and healing time.
Apparently there’s a saying in medical schools that goes along the lines of “When you hear hoof beats look for the horse”, in other words, diagnose based on the symptoms you see .Ehlers Danlos is referred to as the ‘medical zebra’ because while it can masquerade as a particular disorder , or group of disorders, it often is misdiagnosed and incorrectly treated because the rare collagen disorder is not a conclusion most doctors would come to. Even if you were accurately diagnosed with EDS, how does one seek treatment? It is very emotionally and physically taxing, quite honestly half the time I don’t even bother because even the specialists don’t know what to do with me. It’s about treating the symptoms and preserving your quality of life. Make your EDS work for YOU. I am constantly frustrated by how my EDS limits me but I do what I can and accommodate accordingly, I don’t stop living my life, I just need to live it a bit differently than I had planned.
Because this is a totally normal way to stand…..