My conditions

 My primary disabling condition is Ehlers-Danlos Syndrome (EDS).  Along with that genetic disease comes a laundry list of other conditions/comorbidities.  Until I was almost 41 years old, I never had a clue that anything was amiss.  Yes, in hindsight there were so many missed signs, but also genetics didn't even really get started until around 1995 and I was born in the early 70s.  I was "clumsy."  I had "bad luck."  I was often the butt of everyone's jokes because of the ridiculous things that happened to me.  I also caught every cold, virus, etc that was going around.

I worked for the government in various capacities my entire adult life.  My final job was in a historical building which, unbeknownst to me, had mold under all of the wallpaper throughout the entire building.  I was getting constant, recurring sinus infections.  Finally, my GP gave me Cipro because my sinus infections just weren't going away.  Cipro is an extremely dangerous antibiotic that should only be a last resort medication.  I didn't know that.  It has black box warnings of Achilles Tendon Tears, Aortic Aneurysms, Disability and Death.  It further states that it should never be taken if you have EDS or Osteogenesis Imperfecta (OI or Brittle Bones Disease).  A black box warning usually only comes about after a drug company has been sued and lost.  After that, they put on a black box warning and wash their hands of any responsibility for what happens to people after that, meaning you can't sue because they warned you.  When you don't have a chronic illness, you blindly trust that your Drs will take care of you.  I never imagined an antibiotic could disable a person, and I didn't read labels until it was too late.

Seemingly overnight, my body began to break down.  I started suffering chronic pain, stomach problems, extreme fatigue.  I had had some sleep disorders as a child, and they returned full force.  I was sleepwalking, waking up in the middle of the night and staying awake, yet falling asleep at work.  Over the course of the following six years, I went to 33 different Drs, trying to find relief and answers.  I collected diagnosis after diagnosis, none of which explained everything that was happening to me.  They were all trying to convince me it was my "age," it was just "anxiety," I just needed to "lose weight."  All of this added one more diagnosis of Medical PTSD.

The sixth year, my tendons, cartilage and ligaments began to tear.  Over the course of the next 4 years, I tore 15 different joints and broke my foot 3 times.  I developed bursitis, tendinosis, arthritis.  I found out I had Osteopenia and a chronic Vitamin D deficiency.   By then I was pre-diabetic, I had autoimmune thyroid disease (Hashimoto's).  I had developed a couple of autoinflammatory skin conditions.  I suddenly had allergies and even had allergic reactions to things I wasn't even allergic to (MCAS).  I had sleep apnea, severe periodic limb movement disorder on top of the insomnia and sleepwalking and, let's just call it, narcoleptic tendencies. I had Endometriosis and Fibromyalgia.  I found out my Pituitary Gland was so smashed they couldn't even see it on MRI (Empty Sella Syndrome).

Upon the third traumatic injury from doing nothing more than regular everyday activities, I was sent to an extremely knowledgeable physical therapist and finally, she figured it out.  She listened to the story of what had happened to me and asked 2 questions, "Have you ever heard of Ehlers-Danlos Syndrome?" and "Have you ever taken Cipro?"  She knew!  She figured out what all the other Drs missed!  Drs are taught, if you hear hoof beats think horses, not zebras.  This is the reason Zebras are used as a symbol of Ehlers-Danlos Syndrome and several other rare diseases.

Amongst all of the scans I was having for my injuries, it was almost buy one get one free.  I found out I had previously broken an elbow, that I didn't know about.  I found out my face had been "smashed in" sometime before the age of 15.  My nose had 3 breaks and a bone spur growing off of one of them.  I had a turbinate the size of my eye socket.  One of my sinus cavities was completely blocked off.  The ENT was amazed I could even breathe like that.  Finding that injury and probably the way I found out, was the shock that I just couldn't get over.  I went in because I had been experiencing pulsatile tinnitus, and it was so loud I was having trouble hearing anyone talking to me.  Deafness runs in my family, and I just assumed it was the beginning of that condition for me.  He told me my hearing was fine but decided to do a CT scan, just in case.  Afterwards he came in the room, pulled up my scan and chuckled as he asked, "Is there a story to when you had your face smashed in?"  There was another time I went to Urgent care because I had tried to get a pen that I dropped between the seat of my car and console.  I subluxed (partial dislocation) my wrist and middle finger and the residual pain was bad enough I was having troubles gripping the steering wheel 3 days later.  They came back and said those two were fine, but I had broken my ring finger approximately a month prior.  One of the breaks in my foot just showed up healed between the MRI from Bursitis and the next MRI where I had broken my foot (again).  The third time I broke my foot, it also showed I had partially torn my Achilles sometime and that had calcified.

I met with a geneticist.  My variant came back a VUS (variant of unknown significance).  There are six of us on record and it is being argued either EDS or OI.  The geneticist told me, until they know more, go with what my Drs say.  Given the choice of the two, they decided it was EDS (though I have broken 15 bones in my lifetime, but they were either avulsion fractures or only small bones, nothing that has ever been casted).  My grandchildren have already been diagnosed with some comorbidities of EDS/OI and I am so thankful that I went through everything I did to get answers, and it is now in their family history because though they may suffer from the disease and all of its comorbidities, they will not suffer the trauma that medical gaslighting causes.

Over time, I developed a dark humor reflex and a sarcastic cloak—not as defense, but as infrastructure. Every diagnosis became a sidequest, every flare-up a formatting glitch. I rerouted pain into badge-worthy lore and built Nutwork HQ from the scraps. If you see satire stitched into my saga, it’s because I learned to mythify sabotage before it swallowed me.

If you have gotten to the end of this story and have any questions, I would be more than happy to answer them!  For more information on Ehlers-Danlos Syndrome the best source is The Ehlers-Danlos Society. Obviously, I was terminated from my job due to disability and have been in therapy for many years for Medical PTSD.  It was through therapy that the Squirrel Garden was created, which then eventually sparked this journey of becoming the Squirrel Garden Rescue & Rehab.  Life takes the craziest twists and turns, doesn't it???