May is EDS awareness month...

Hello May, hello one year diagnoses, hello pieces of the puzzle I knew existed.

In short this is my story and contribution to Ehlers Danlos awareness month for 2017.  For now, until the genotyping has been completed, and the source of our major malfunction has been revealed, awareness is the voice we have to lend hope to our struggle.    

"No, you're not crazy."  Thank you geneticist.

Yes, that's exactly what he said to me when I received the diagnoses I requested.  Yes, I diagnosed myself.   Subsequently,  I have had two geneticists confirm my hEDS diagnosis, and one rheumatologist who has attempted to diagnose me with EDS all three times I have seen him.  It took me 19 years to for a physician to verify that my 'phantom,' non-inflammatory pains were as real as I had always thought they were.  I had submitted to the thought that I was 'over thinking' my pain for so long, I wasn't even sure I was ready to file them in the non-fiction category of life.  

I was diagnosed May 10th of 2016 and, in the early summer of 2016 I was walking through a sporting goods store and searing pain in my right hip, louder than any pain I had experienced to date, stopped me dead in my tracks.  Loud.  Yes the pain was excruciating, lower right leg movement, null, plan of action: gooooo slooooowwww.  Scratch that, can you get the car please?  Still, the pain is so loud, maybe just screaming at me a little less, but rude and uninvited.   It took at least two months before I was able to move my right leg any increment without immediate pain.  


Fast forward early March of 2017, an MRI with guided contrast injections confirms I do in fact have a tear in the labrum of said rude right hip.  That upward triangular fleck of seeping contrast fluid is the outline of my tear.  If you are unfamiliar with the hip joint, the labrum is a ring of cartilage that sits in the concave portion of the hip and allows the head of the femur to articulate within the socket.  Acute pain is almost always in the groin or front of my hip, and then almost always radiates throughout the joint.  I also have a snapping hip which clicks and pops.  My hip will stick when walking.  Pops with most leg exercises.  I do my best to keep to a regular exercise routine, to keep up with my physical therapy, but the fatigue and lack of energy, and  can be unrelenting.

Circle back to a different pain that prompted my google search of 'hypermobility' that lead me down the Ehlers Danlos path.  After I had my son in 2014 I began experiencing searing pain in my thumbs.  Both thumbs.  They were so sensitive, that just brushing my hands against my pants one day sent my body barreling to the floor in pain.  I figured that wasn't right.  Turns out all the years of  bending my thumbs backwards and forwards to touch my forearms had taken its toll on my carpometacarpal joint at the base of my thumbs, or my CMC joints.  I have a hard time gripping cups, jars, making any twisting motions, writing, typing, grasping, and maintaining force or pressure with any part of my hands creates great strain and waves of pain, and crippling sensitivity.  As I write and organize my thoughts my hands are slowly weighed down by the increasing pain of movement alone.

I'm going to be brutally honest, I feel a bit unregulated with my medical care.  At my original meeting with the geneticist last year, one thing that stuck with me was when the geneticist said the next step would bepalliative care for my chronic pain.  If you are not familiar with the term palliative, it means serving to palliate.  Palliate literally means

1.  to relieve or lessen without curing; mitigate; alleviate.

2.  to try to mitigate or conceal the gravity of (an offense) by

excuses,apologies, etc.; extenuate.

"palliative". The American Heritage® Science Dictionary. Houghton Mifflin Company. 1 May. 2017. <>.

The second one though gets me every time.    I went to work trying to figure out what all of these pains were that I had been dismissing for so many years.  The inability to control or sustain strength in my neck for my entire life, the painful reverberating tinnitus, nerve pain, sensory pain, migraines, nausea, GI issues, muscle tremors, dizziness, brain fog, chemical sensitivities.  I was met with hesitation, disbelief, interest, confusion, despair and intrigue.   I have had such a bad run of encounters with physicians this last year.  I could dwell on it, but to be fair I realize physicians are humans too, and I am young enough that I feel I still have a healthy chance of having that light bulb moment.   I do have amazing counselors that at least remember my name.  Serious, it's nice when that happens.  

Long story short, I definitely (definitely) have hEDS,  orthostatic hypotension (according to Dr.s notes I 'show signs of POTS'), major depressive disorder, chronic pain, migraines, and fibromyalgia (constant nerve pain, joint pressure sensitivity), osteoarthritis, poor wound healing.  Bag of fun, I know.

I am grateful for the drive my illness has given me (at times, because let's be real, fatigue takes me down quite often).  I am grateful for the community I have found online, because no matter how hard you try to explain with vim and vigor, sometimes a stranger can provide the most understanding ear.  

I am grateful to have this platform to share my story, and to connect with so many of you who continue to inspire and amaze me daily.  

More than anything, grateful for my son who drives me to learn more, do better, and persevere.  My husband, for definitely taking the bad with the good, being supportive, and attentive, caring and helpful.  Bonds I have formed through social media have instrumental in brain dumping, which leads to lower anxiety levels, and happier humans.  

Please share your story.  As a contribution I also created the zebra at the top of this article.  Until they find the reason, we're still medical zebras.


Also, In light of not wanting the tone to be completely negative, let's go over the positives.  My hands fold into almost an shape making tiny object retrieval fairly easy.  I can scratch my own back (see awkward photo).  Jokes are almost always funny, because I rarely remember hearing them the first time.  Oh, oh, I'm super soft, thanks EDS.   Being in denial also made me an avid self healer, so odds are I probably have a balm or a tea for whatever is ailing you.