Ehlers Danlos Syndrome International Registry

When I discovered I have Ehlers Danlos Syndrome, I felt very alone. After much discussion, and looking at resources that were already available, I realized that finding support you can access in person isn’t easy. I’m always needing suggestions for local resources, but I am fortunate enough to live in one of the few areas of the US that has a long-standing EDS support group meeting once per month.

If you have EDS and you’re trying to find someone to talk to who REALLY understands, check out the Ehlers Danlos Syndrome International Registry.  There are so many zebras there! Maybe you’ll find a local friend.

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Writing a letter to the person who saved your life

Note: This is the letter I sent to the therapist that treated me in 2001. I had not contacted her in 12 years. How do you find words to thank a person for saving your life?

Dawn,

I hope that this email finds you.  I sent you a linkedin request with as much of a note as the site allows.  I’m sure that what I said wouldn’t have been enough to jar your memory – and the photo of me doesn’t really look like me.  Even if the photo did look like me, I realize that you have touched so many lives that it is probably hard to remember them all!

I came to the treatment center in 2001.  I was abusing prescription pain medications during a long illness.  I had a shunt placed in my head to relieve the pressure on my brain.  I had been sick for about 18 months, and had basically lost the will to live.  I didn’t know how to find myself, or define myself outside of my illness.  You taught me how to think of myself as a well person again.

I was very co-dependant with my Mother, who also abused prescription pain medicine.  I grew up in a really dysfunctional household, where I was the caretaker for the adults and my little brother.  You showed me that this wasn’t normal and that it would be ok if I got angry about the childhood I had lost and the abuse I endured.  So, with you, I got angry for the first time in my life.  It was overwhelming and I was scared that I couldn’t contain all of my anger and misery if I acknowledged it.  You proved to me that I could.

At the age of 25, while at the facility, I felt empathy for the first time in my life.  This sounds dramatic, but with everything I had going on at home growing up I never really learned how to care about other people – only the people I had to take care of.  I’m not sure how this happened exactly, but I found myself crying for someone else’s pain at an AA meeting.  This liberated my soul in ways I didn’t even comprehend at the time.

You were the first person in my life that believed in me SO much that you made me think that all of these things were possible.  I am certain that without the help I got under your care I wouldn’t be here today.  That’s not hard for me to be sure about either, because my Mom did finally die of an overdose four years after I left treatment. I did everything I could to help my Mother, but the only thing I could do in the end was to let her feel the pain she was creating.  It didn’t work, but thanks to you I know I was doing the right thing and I don’t suffer guilt about trying to save her life even though I wasn’t successful.

You also wanted me to go to OA meetings, and I’ll admit that I was pretty angry about that at the time.  I weighed probably 250 lbs or so when I was an inpatient there, but I couldn’t accept that food could be a drug or an addiction.  I weigh 120 lbs now, and I do finally understand the point you were trying to get across to me back then.  It took a while, but I finally got it!

This email is to make me feel better if I’m honest.  You have given me more than anyone in my life (except my husband who has now been with me for 10 years).  YOU are a big part of the reason I was able to find a wonderful man to love me.  I was taught at RI, healthy people don’t fall in love with sick people. Thank you for making me healthy enough to find a person who loves me exactly as I am.

I want you to know that despite continuing medical issues, I am very happy with my life.  I was recently diagnosed with Ehlers Danlos Syndrome (a genetic disorder from birth, which was what was wrong with me all along medically).  I am still coming to terms with finding out that I have had this genetic disorder for my entire life, but I’m confident that with what I learned from you I won’t be consumed by it.

I attached a photo of me with my Mother, Grandmother and Husband.  That photo was taken the last time I saw my Mom coherent enough to have a conversation, and still alive.  You may actually recognize me in this older picture.  I’m proud of what my life has become, and I am happy to be a normal weight person.  I hope you are proud of me too!

The Last Supper

I feel like a complete person, finally, and I am learning to love myself more every day.  I owe a debt I can’t repay to you, but I’m doing my best to pay it forward in all the ways that I can.

Thank you for saving my life.  Even though I forgot your last name, you never left my heart.  My grandmother almost died this past weekend, and I was getting things out of her attic.  I found all the letters I wrote my Mom while in treatment, and the materials that you sent her.  I was finally able to find you!

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 3

Even though I *have* EDS, I don’t know that I actually understand how it progresses, how it becomes worse – how the damage becomes so overwhelming that it starts to steal your life.  As a teenager I did live with daily pain that wasn’t normal.   I didn’t realize how abnormal it was, so I just kept on keeping on.  The pain was nothing like it is now, after years of abusing my body by doing all the things that ‘normals’ do.  Now, by ‘normals’, I DO NOT MEAN THAT EVERYONE WHO DOESN’T HAVE EDS HAS AN EASY TIME, or has even necessarily has their health intact.  I realize a lot of people struggle for a lot of reasons, but for the purpose of my blog I’m going to call people who don’t have EDS ‘normals’.  If it makes you mad, feel free to leave me a message about it.  It doesn’t mean I’ll *do* anything about it, but I know I’m bound to piss someone off at some point!

Because I wanted nothing more than to move out on my own one day, I started working as soon as I could.  I was babysitting summers at 14 and had already secured my first ‘real’ job at Taco Bell a few days before my 16th birthday.  I wanted to work.  I needed to work.  Trying to attend community college without any support from your family requires that you DO work.  I took a job at a telemarketing agency while I was in college to try to make ends meet.  Thanks to my father being disabled, and my mother’s creative tax filing skills I managed to qualify for a Pell Grant to attend school.  Well… I did qualify for a grant, until I started to make more than a couple of dollars a month from work.  When my income got added with my mother’s, I lost my eligibility despite the fact that she was unwilling to contribute a penny to my education.  To emancipate from her at that age would have required legal maneuvers that I was unwilling to undertake (remember, I didn’t know how to say ‘no’ to her yet).   So I had no choice about working, because my mother was charging me rent and I had expenses if I wanted to attend school.  It was a real catch 22 situation.

What I needed was a REAL job, and I found one at a microchip manufacturing plant (which used to be a part of AT&T).  It was a union job, well paid.  I couldn’t afford to stay in college without a job and I didn’t have the energy to go to classes once I started working 12 hour shifts at the factory.  What it did allow was for me to live on my own FINALLY, even if ‘on my own’ meant that I was paying the mortgage on my mother’s house that she no longer wanted to deal with.  She moved on to Kentucky with her wife, and I took over the reins on a 3 bedroom, 2 bath house on the 5th tee of a golf course in Orlando.  It sounds really posh, but old housing developments with golf courses are a dime a dozen in sunny Florida.  The house was run down and needed a lot of attention, but it had enough space for me to bring in roommates to help make ends meet.  This was the beginning of one of the better times in my life.  I was about to turn 21 and here I was working at a great job, living in my ‘own’ house and partying with my crazy roommates on my days off.

This new life had some pain to be sure, but it was manageable.  I finally was finally free to take care of no one but myself and it felt like such a relief!

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.