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The Face That Ehlers-Danlos Syndrome Gives Me

Ehlers Danlos Syndrome is such a cruel disorder.  It takes away so much from those that have it.  Our bodies turn against us in so many ways.  Most of us live in a world where our friends and family never really know what we are experiencing. We learn to hide our pain with smiles, and laughter as a way of coping as well as out of fear.  We live in fear of being judged by others, of being considered hypochondriacs, or just one who complains too often.  Fear is out constant companion, we fear the pain getting worse, another dislocation, and we fear one day we might require a wheelchair. How do you tell the people in your life what your body is doing to you?  I often think it impossible to fully put into words.  How do you burden the people you care about with such things? I doubt it would be worth it in the end.

I don’t remember a time in my life where pain was not there with me. I don’t remember inviting pain along, but he sure doesn’t seem to want to piss off.  It’s here with me, through thick, and thin.  How exactly do you explain that to someone?  Do you even want to?  What exactly do you expect a friend, or family member to do with that information?  That part of an invisible illness weighs so heavy on your shoulders.  You just never know what someone is going to do with that information.  It doesn’t help when past experiences (which I have mentioned on an earlier post) have had lasting negative effects.  It’s very difficult for others to know what words, what statements they might make to a friend, or lover that can have a lasting, negative effect.

So here you are with a body that just ain’t right, that never cooperates. A person that suffers from pain that is with them every day, pain that would drive most to drugs, alcohol, or worse.  You learn to hide it, you learn to genuinely smile despite the pain, you even learn to laugh.  You become amazingly adept at hiding your pain that doing so is second nature.  Pain no longer lingers on your face, in your voice; it hides below the surface, silently torturing you.  You’ve learned to blend in with the norm, appear to be status quo. You’re not, but you’ve learned that it’s just better to appear that way.

Now I’m going to go ahead and mention that I hate the standard pain scale.  The thing is so freaking objective that it’s worthless.  Then you take a chronic pain patient that has learned to hide their pain, and well we are just screwed.  No doctor believes you when you say your pain is at a 7 today unless you look like a crack whore who just had her baby taken by social services.  It just isn’t going to happen.  I know the look, I get it every flipping time some jack wad asks me that question. And I’m sitting there, half wanting to scream “Look, I know you have your perfect picture drawn of what the face of someone reporting a 7 on a pain scale should look like and I’m here to tell you that little picture isn’t doing you any good with me. On a good day my pain trots in at a 5 or 6, that’s a good day. I’m too damn vain to run around life scrunching my face up, making wrinkles that won’t go away. I’m not going to cry in front of you either because it’ll screw up my makeup, or give me a headache. I’ve been living with pain since I was a child, A CHILD. And I’ve heard my whole life; don’t make faces they’ll stay that way. No one likes to look at an ugly face, and about 700 other things.  No one cares that you’re in pain, they just want you to stop making faces, and shut up. So that’s what I did, and I’m telling you that MY PAIN IS AT A FLIPPING 7 TODAY” Instead I shrug, and let it go. So, I’m not going to tell you that I think about what scale my pain is on, I have four levels in my pain scale: Functioning, Barely Functioning, Not Functioning So Well, and I Would Cut Off My Finger To Make This Pain Go Away. Thems the breaks, and I have to go on with my life no matter how bad the pain is that day.

Here we are at the doctor’s office now.  This is who you go to when you don’t feel well, doctors are supposed to heal us, to make us feel better.  However, when you have HEDS going to the doctor is a whole different experience. There is no cure for HEDS, so they can never heal us. Many doctors don’t know enough about EDS to even help us appropriately manage our condition. One doctor recently told me that “You need to learn to live with this bothersome, non-life threatening condition”. Bothersome?  BOTHERSOME? Bothersome is a hang nail pal, HEDS is way past bothersome. Yet, here I sit with all this information, all these ways that my disease can be managed and I’ve yet to find a doctor willing to listen. Sometimes you think you’ve gotten lucky, you’ve found a doctor that seems like they might be willing to listen.  Given time, you might be able to develop a level of trust, a doctor / patient relationship that might grow to be beneficial. Then you realize their staff is astoundingly incompetent, that or they just don’t care. In my travels
I have yet to find a doctor that I feel is helping me manage my pain as well as it could. I haven’t given up hope yet. I’m just not there.

For now, I will do what I always do. I live with my pain, my constant companion. I try to prevent further injury; I do what I can to take care of myself. And for now, I don’t give up.

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Surgery Nesting?

So, here I am doing what I can only describe as “surgery nesting”.  It’s like a combination of spring cleaning on crack, and the nesting pregnant women do…if they were on morphine, and the occasional Ativan, and some muscle relaxers.  Now I feel  that I must first point out that I am no addict, and that I am highly functioning on medications. At this point between the unrelenting spine pain with a sloppy side of radiculopathy, my normal EDS pain, and my new found friend autonomic dysfunction; well it’s about the only way I can do anything at all.

The problem is that even still I have to lay down every 10 minutes or so.  So we’ve gotten in a pattern of doing things, cleaning, organizing, laying down to write out my little “Hi I have Ehlers Danlos Syndrome” and a list of concerns for each area of medical professionals I’ll be dealing with.  The OR nurses, the anesthesiologist, the recovery nurses, and for the nurse on my floor. I figure little brief notecards are the easiest way to get them to look at, and that way if I wake up like raggedy Anne, all floppy I can say “I Told You So”.

Then there is getting everything ready for the hospital stay. I could be there 3-5 days, so I’m going to need entertainment.  My family and friends are all “you’re just going to sleep with all the drugs they have you on” and I’m all “this is me on 30mg of Morphine, 2 mg of Ativan, and 4mg of Zaniflex”.  The ones that know me well are all… “Oh yeah, you’re gonna need some company and entertainment”.

Then I get up and clean, people are going to be in this house, and with a spine fracture, a herniated disc, and spodylosenthis, that’s all been thrown on top of my HEDS.  Well, my house is a source of pure embarrassment right now.  The guest room looks like an executive’s closet exploded in it, all ruminates of my former life.  My kitchen is something out of a horror film, my living room and entrance hall are a dang obstacle course. And I’m not even getting into the dining room, and other 3 bedrooms, nor the guest bath. Ahhhh!  IT’s too much!  I’d hire a cheap cleaning crew, but I’m too embarrassed to let anyone in the house.  Pride’s a bitch I tell you.

Then there is the list making of what I need at home, comfy clothing, soft things, things to help me pick things up, setting up things so I can get to them without bending, and how the hell am I even going to deal with the bathroom.  I just found out that I’m going to need some ridiculous contraption called the bottom buddy to wipe myself.  I’m.Going.To.Need.Tools,To.Wipe? FTW! Seriously!  And I tried, no bending, no twisting, perfect posture potty time?  It was like ball room dancing with a midget.  The only way I’m going to be able to do it is by dislocating my shoulder.  Then I discovered the bottom buddy.  The magic wand to wipe your bottom after back surgery, and it exists.  So throw your pride out the window lady, you’re gonna need a magic ass wand to do your bathroom duties.  Let me be the first to tell you that I am sad I didn’t invent this, because they are damn near $40.  It’s going to cost me an extra $40 to do something I’ve been able to do since like 3-4 years old.  Cripes.

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The Bottom Buddy Will Help You Lose Your Dignity, And Keep Your Bottom Clean

In my wild nesting, and purchasing of all things listed on the post spine surgery post op MUST have list. Which I will add I read this list and thing, holy merry mother of cupcakes!  I need all this stuff? I need all this stuff! CRAP I NEED THIS STUFF!  It’s a freaking undertaking to get ready for this surgery.  A mind blowing undertaking! Then it dawns on me that maybe someone came up with all this shit to do before surgery so we weren’t sitting around stressing about it.  I’ll go ahead and tell you that before this project started I was watching every gory surgery video, ready every horrible tail of things gone wrong.  Thinking, well 85% are good odds right?  I mean I’ve got a 20%-15% chance of being maimed for life, that’s not bad. Right? Thank god the nesting phase kicked it.

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Who am I going to find to keep my precious girls?      

So little Lily Bean is staying with her Aunt Lee who understands her risks of being 2lbs, and understands that she’s never met a stranger and she is just not allowed to get in a strangers car!

Kona is staying with a co-worker who has kept her before, so she’ll be happy getting love, and playing with her Rottie friend Tonka.

Now, sweet Violet has to find a place, in a month she’s got to have the perfect babysitter. Eeep!

As you might be able to tell I am anal-retentive, over-protective of my girls.  I’m a vet tech, we’ve seen the worst. Sue me for being a wing-nut over my dogs.  Oh, and I have to make lists for all of them, what they can have, how much, when, what they can’t have, what this, that. ACK!

Then there is getting the house proofed for the ultimate clumsy girl.  I’m pretty sure I got an extra dose of the HEDS bad body proprioception.  I filled out some paperwork in advance for an upcoming doctor’s appointment recently.  The questions that made me laugh the most were:

Do you ever fall:  Does the sun ever come up?

How often do you fall:  More than I could ever, humanly possibly count.  I don’t even try to keep up with it.  Sometimes I don’t fall all the way; I just face plant into the wall to save myself.  What do you want from me?

Yes….those are the answers that I actually put.  I hope the doc has a sense of humor…

So I’m buying lounge wear, butt buddies, grabber dohickies, shower stools, I’m gearing my house up to the coolest senior house on the block.  And I stumble upon the most holy of pillows. The leachco  Back ‘N Belly Contoured Pillow.  I’m in love with this thing!  I slept on my side without dislocating or subluxating a shoulder.  It was like the heavens split open and the pillow angels sang. Peace in bed, good will toward joints.  You can move this thing around and support your hips, knees, shoulders, the possibilities are endless.  I love you goofy u shaped pregnancy pillow, even though I know one day you will bring me a funny eye from some cute boy.

That all said, I’ve got a few more things to do before bed.  I’ll be sure to update you more, as well as I promise to update through the surgery to tell the tale of EDS and lumbar fusion with two awesome surgeons that actually know the risks of doing this procedure on an HEDS patient. Wooo!