This, I Believe – Poetry about life with EDS by Caitlyn Keller

I’m not often moved by youtube videos, but this one is too wonderful not to share. It tells my story, it tells the stories of people I khow who suffer from Ehlers-Danlos Syndrome. Does it tell your story too? I wish I could maintain this positive perspective more often about my situation, but if I can for even a little while I consider that a win. I am still struggling very much with acceptance. Videos like these help me to accept that I am a mutant.

How did this video make YOU feel? Comments welcome. Am I the only one who is nearly in tears every time I hear it? I want to hear drummers in the bends of my knees. Would we be better off if everyone was a little bit broken?

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Road to Diagnosis – Part 4

Turning 21, getting a good job at the microchip factory, and finally having my own place seemed to solve so much.  Having some illusion of control over my life helped my mental state immensely.  The shifts at the factory were long, and they caused a great deal of pain, but I was self-medicating on my time off and my situation really wasn’t THAT bad yet.  Or at least I convinced myself of that.

Not that bad still included some injuries to my hands and some back issues that kept me off work for over three months.  Another diagnosis of degenerative disc disease, and now also bone spurs on a couple of my thoracic vertabrae.  When I returned to work from my ‘back vacation’ I could tell that my co-workers thought I was faking it.  This only made me work harder.  In retrospect I realize that I was doing a lot of damage to myself during this time, pushing myself and trying to prove something, but I was medicated and most of the pain hadn’t set in yet.  My factory job got harder and harder for me to do, but being a union thing, I wasn’t going to be fired for medical issues when things did fall apart.

I knew I couldn’t keep doing that job forever, so I started to look for other openings within the company.  I thought I found my salvation when I landed a job on the ‘management’ side as a Document Controller.  This meant a cushy office chair and no more walking around on steel floors and taking that pesky suit on and off 10 times a day.  I had the computer skills needed from my time at community college and the position was mine!

The triumph was short lived though, I guess the boss just didn’t like me.  Maybe it was adrenaline rushes on my part too, but I spent most of the next six months anxious I’d be fired and battling ‘tension headaches’ on a daily basis.  My menstrual cycles were still horribly painful, so between the headaches and the monthly – I became ‘that sick girl’ at work yet again.  I kept seeing my doctor about the anxiety and headaches and he kept prescribing medication that masked the symptoms so I could function.

It was a Friday morning, the one before Labor Day weekend in 1999.  I woke up feeling nauseated, with a headache worse than normal.  I wanted nothing more than to call in, but I was afraid to.  My boss scrutinized Monday and Friday absences worse than the rest, much less on a holiday weekend.  I drug myself into the shower and leaned against the cold tiles and tried to summon the courage to get myself to work.  In the shower I just felt dizzy and more ill, and I knew this was going to be another call in.  I bit the bullet, called my boss and slid back between my covers and slept most of the day.

The next morning, I woke up even worse.  When I opened my eyes, everything was blurry.  My head was pounding, and the shafts of light coming through my bedroom windows felt like icepicks in my head.  The good news was, at least it was Saturday on a holiday weekend.  I had three days to get myself back right for work on Monday.  I laid in bed a while longer, discussing the symptoms with my then live-in boyfriend and assessing what I needed to do.  We mutually agreed that the eye symptoms were too weird to ignore, so I called the nurse hotline I had available through my insurance.

The nurse of course insisted the emergency room, yet I still argued with myself that it might not be necessary.  I waited and took another shower leaned against those cold shower tiles.  Not feeling any better after the shower, I allowed him to drive me to the ER in Orlando.  The next few days are a bit of a blur, but I’ll do my best to recall the highlights in part 5 of my epic saga.

Road to Diagnosis – Part 1

My name is Angel and I have a story to tell.  I’m 37 years old and was diagnosed with Ehlers Danlos Syndrome on April 8th, 2013.  It’s been a long road to diagnosis, and I hope that by sharing my story I can shorten the trip for someone else who needs to arrive at this destination.

Baby Angel

I was their first, and they were so excited!

On November 21st, 1975 I was welcomed into this world by my parents, Rita and David.  My Mom was in labor with me for 72 inconceivable hours and I had to be pulled out with forceps – which gained me the nickname ‘conehead’ as I’m told I arrived looking a little pointy on top.  Despite the long and painful process of my birth, by all accounts I was a happy and smiling baby.  I was very active (and very flexible) and generally good tempered.  Since no one in my family was ever diagnosed before me, no one had any reason to suspect that any of my flexible behaviors could be a sign of a problem.  My Dad was always ‘double jointed’ and no one thought it was a big deal.  I was thriving, and everything seemed just fine.  I have some great memories of playing with my best friend Natalie who lived down the street in New Vienna, Ohio.

Daffodils

I loved the daffodils in our yard.

As a small child I would often put both of my legs behind my head and rock to entertain myself.  Surely not a common thing for a kid to do, but it didn’t seem odd to my father who had been doing ‘party tricks’ of his own for all his life.  Honestly, the main concern at the time was just that I kept my clothes on when I did it in front of people!  I was clumsy too, and would literally kick myself in the butt when I ran while playing T-ball at school.  Being uncoordinated is hardly a warning sign either, so it was all chalked up to being a little clumsy when I was no good at gymnastics or ballet or anything else of the sort.  I’ve since heard that many EDSers are often blessed/cursed with these abilities in childhood, but I wasn’t one of them.

Kid Lifting

Me holding a baby goat.

Throughout the first 12 years of my life everything really did seem pretty fine physically, and the pains of EDS had not yet found me.  I didn’t feel that I was really different from any of the other kids.  I was able to do things just like all the other children, as well as some ‘bendy things’ they couldn’t do.  I was active in girl scouts, little league soccer, jumped rope, roller skated, ran, and played like nobody’s business!  My family often remarks about the vivid imagination and jovial attitude I displayed as a child.  I had a thirst for learning and loved to talk.  I was a pretty strong kid, strong enough to lift a kid (a baby goat) and there weren’t any problems apparent to anyone.  By all accounts I seemed happy and normal.

My First Beer

What passes for amusement in an alcoholic household.

When I was 8 years old my parents divorced.  I bounced back and forth between Mom and Dad for a few years living in Kentucky.  Around age 10, I ended up moving to live in Orlando, Florida with my Mother and step-father.  It definitely wasn’t an ideal situation, as they both had alcohol/drug problems and general problems just dealing with life.  My step-father was a real tyrant and I guess my Mom enjoyed the maltreatment.  At any rate, it was hardly a condition for a healthy child to thrive in, and definitely not a great environment for a child with EDS.  By age 10 I was more than partially responsible for taking care of a household of adults and my little brother.  But, the EDS pain hadn’t set in yet and I was getting by for the most part physically (emotionally is a story for another post).

Teenage Years

Me around age 13 torturing my little dog in a dress.

My EDS story really starts with the aches and pains I experienced as a teenager.  Puberty hit around age 13 and, like many other people with Ehlers Danlos Syndrome, I went to the doctor for shoulder/neck/back pain – because that’s often when the issues with EDS begin to manifest.  Unfortunately, all too often doctors misinterpret this pain we report to be growing pains or just not that serious.  My breasts were developing rapidly with crazy amounts of stretch marks (also a sign of EDS).  I recall that there was a mention of degenerative disc disease then, which seems like it should have raised some sort of red flag.  Little did I know, when that doctor sent me back home telling me to lose weight and exercise, he would be the first of SO MANY doctors who just didn’t take my complaints seriously.  Surely no one that young could really be sick, right?

Junior Prom

Dressed for my prom at age 16.

Some of my most vivid memories of my teenage years are about dealing with pain in my back, neck and sacroiliac joint (even though I didn’t know what a sacroiliac joint was at the time).  My menstrual cycle was incredibly painful and would often keep me out of school for 1-2 days per month.  My family wasn’t very understanding about this stuff and still expected me to do my chores (which in that household was just about everything from dishes to laundry, cooking and cleaning).  At age 16 I got my first job at Taco Bell which caused even more pain.  Complaining to anyone didn’t do much good, so I learned to keep my aches and pains to myself pretty quickly.  I tried to hide behind a smile, but there wasn’t a whole lot of smiling going on inside.

Hiding behind a smile with friends near graduation day.

Hiding behind a smile with friends near graduation day.

I found more and more reasons to avoid any and all physical activity,  including getting notes to get out of physical education at school.  I didn’t  know that exercise intolerance was common with EDS.  I was embarrassed by my lack of fitness, and with obese parents at home my eating habits were not sustainable without exercise.  The less I moved, the more weight I gained.  Exercise often caused me pain, but I still made a few attempts at various times during my high school career to ‘diet and exercise’ so that I could be ‘normal’. I continued to visit doctors about my pain, but they all just told me to lose weight so that my breasts would be smaller – that the weight was causing the pain.  I know now that isn’t the case, but I sure did spend a lot of time beating myself up back then.  I’ve always been a little too quick to accept the answer that something is my fault.  That’s starting to change now.