Thursday, June 7, 2012

"Oh, let me tell you about YOUR disability..."

Its been a while since I've blogged, but it's something I'm desperate to get back to.  This post has been a while in the making.

I had to bite the bullet a few months ago and my husband and I had myself declared "handicapped - permanently" through the state so I could receive a placard for the car while he was deployed.  It was a very sad day for me.  It's a struggle, constantly, between letting people know about Ehlers-Danlos Syndrome and how it affects me - and not letting it rule or ruin my life.

May was EDS awareness month.  I find this to be especially important as I would not have been diagnosed if it wasn't for a passing conversation with a complete stranger.  It's so important to me that more people learn about EDS.  With this comes...more opinions, though, on how *I* should be living *my* life with this syndrome.

Whenever you are disabled, no matter the cause or severity, everyone seems to have an opinion on it.  "Oh, you're TOO disabled to be doing that!", "You don't LOOK disabled", "IF you were disabled you surely couldn't do THAT!", "Are you sure you are disabled?", "Are you sure you should be doing that?", "I think you are faking", "You don't need to be taking THOSE medications", "You can't be in that much pain, surely, and still be moving!", "I think you are a drug seeker", "*I* would never take those meds, even if I was in pain", ect ect ect.

Everything I do is now questioned, scrutinized, judged, and ridiculed.  I've dealt with it from people who don't know me well, Chris's squadron mates, and most recently people I confided in and considered good friends of mine.  It's tough, but it shows me who I can count on to be there for me and who I can't.  It also shows me how much further we have to go in educating the general public on Chronic Pain conditions and EDS.

Yes, my joints dislocate, my tendons and my ligaments tear, my muscles shred, and when the damage is severe enough my bones begin to degrade.  Yes, I get up every day and do what any hard working mom of 5 would do.  Would it be easier to lay in bed and cry? Of course, and there are days where mentally I AM still in bed, curled in a ball, and crying my heart out.  Crying because of the pain, and crying because it's just not fair that I have this.  But physically, I get up and take care of business.  When it becomes more tough to push past the pain I meet with doctors and have procedures done to help.  Thats why I had my wrists fused.  I couldn't push past the pain any longer, and by that time my wrists were permanently dislocated, shredded, and separating from my arm.  I think I did a damn good job still parenting with broken wrists.

I feel that disabled people have to go ABOVE and BEYOND what any able bodied person does, and still we aren't good enough.  In my case, it's with my parenting and my ability to care for my family.

If I was an able bodied mom of 5, whose husband is deployed, I could make a frozen pizza for dinner, take a nap in the middle of the afternoon, or feel so tired by the end of the day that bed time comes early and everyone would completely understand.

When you are a disabled mom you must ALWAYS cook meals from scratch, maintain a meticulous house, play non stop with your children, have endless amounts of patience, and never ever be tired or complain.  If you fail, or have a bad day, you will be accused of being too disabled to physically care for your children.

If you decide to have a large family when you have a disability, well you are just in for it!  Even if you parent in such a style that you are constantly attached to, engaged with, or responding to one of your kids.  You mine as well be lumped in with abusers and neglectful parents!

I REFUSE to let EDS take away my dreams.  I was born with it.  A lot of people are born with it.  Experts believe about 1 in 800 people have some form and 95% of people will never be accurately diagnosed.  To me it's like yelling at a woman with RA for having kids, RA can be passed down too.  No family is perfectly healthy. Of course I hope my kids don't have EDS, but given the alternative (them not being born) I don't think they'd rather that have happened. Plus, having a parent who is AWARE sets them up for such a much better future dealing with it than I had.

Even my medication and how I handle my disability is scrutinized, judged, debated....

My journey into pain medication began almost 4 years ago when the pain became unbearable.  After the birth of David within 6 weeks I went from okay with minor aches and pains here and there, to unable to walk or use my arms from severe pain.  My elbow began dislocating, and eventually after a few weeks of dislocating over 100 times per day I could no longer pop it back into place.  It's still dislocated 4 years later.   The geneticist said it's one of the worst hes seen.  There is no option for it but a replacement which I can't get until i'm 35.  My legs stopped working and after PT and OT 3 times a week for 8 months I regained them but popped my achilles tendon in the process.  My wrists were severely damaged from dislocations, and required the fusions to fix.  During this process I was prescribed percocet, but no one was managing my pain meds.  I began taking more and more just to get the same pain relief.  Once I was taking 25mg at one time I knew something had to change.  My doctor suggested a pain clinic and I've been there ever since.  I've only raised my pain meds twice in the past 3 years which is pretty rare and slow going.  I'm very careful to not take too many because of tolerance issues.

I'm currently on dilaudid and morphine.  This has caused quite the stir.  Quite the opinions.  Until someone can experience the pain I'm in they can't say what they really would or would not do.  Compared to a lot of EDSers I'm on NOTHING.  One lady is 3 years older than me and having a pain pump surgically placed inside of her.  Others are on fentanyl pops, morphine patches, oxy, and dilaudid at the same time.  I would never judge any of those people.  Pain is so mentally and physically exhausting.  We do what we have to do to function.  I refuse some of the harsher pain managments, like methadone, because of nursing and wanting more kids.  I'm very carefully monitored by a huge team of doctors.

At the end of the day, it's MY life, MY choice, MY disability.  I don't mind sharing about it, but keep your opinions on how I should be living or managing it to yourself.


  1. I'm glad to see that you are blogging again! I'm so sorry that so many people aren't taking your pain seriously. I know how that is, right now I feel like I'm talking to a brick wall when I tell my doctor how incredibly much pain the EDS causes me. You are a great mother, and you shouldn't have to go above and beyond what other mothers do, just because you are disabled. Unfortunately, that seems to be the way things are. That needs to be changed, and soon.

    1. I'm sorry to hear you are having issues pain wise :( I don't know what I'd do without my pain doctors.

      Thank you for the kind words. I promise to be blogging more in the future!

  2. Here's what people don't understand about narcotics....

    If you take them without being in pain, your brain interprets that differently and you'll become addicted.

    If you take narcotics appropriately because of pain, you won't become addicted because your brain sends the medication to the pained part of your body instead of the addicted part.

    I'm not explaining it correctly but that's the general idea. I'm sure you could google and get a better explanation.