8

Could You Run Yourself Over With Your Own Car?

Some people can tell you what it’s like to be hit by a car…only I could tell you what it’s like to be hit be her own car, or Jeep to be exact… while it’s parked.  It takes fabulous luck, and skill to pull off what I did today.  I am battered, scraped, bruised, and my pain is much greater than it was before I hit myself with my own car.  Sadly, that means I went from a barely function level of pain to a “I have to keep reminding myself to breathe, why haven’t I trained one of my dogs to fetch me a coke from the fridge yet, holy mother of pain, make it stop please” level of pain.

So how in the name of god’s green earth did I pull this off?

I got home from getting a prescription refilled, and slowly climbed out of the Jeep.  I’ve been pretty slow on my feet the past couple of weeks, as my back has been getting worse, and I hadn’t slept a wink last night.  As I rounded the front of the Jeep I walked right into a giant spider web, with an equally giant spider in it.  Anyone that knows me can tell you that I have an irrational fear of spiders.  Granted it is not as bad as it once was, it’s still one of those deep into your subconscious fears.  Well, I screamed like a little girl and jumped.  Not like I came off the ground jump, just your normal flinch, hop back….ok, it was a crippled person’s flinch….With what happened next you’d think I’d have done some sort of spectacular move to have set this chain of events off.  But, nooo I just had a tiny little hop back, and managed to set off the most ridiculous string of insane clumsiness ever.

Once my little hop back was executed, there was no going back.  My ankle rolled to the side, then bent back under my leg, and with that shearing pain it sent me flying into my own bumper…Yes, my own bumper and with enough force that I bounced off.  Right before my back slammed into the bumper I attempted, at least I like to believe I attempted to catch myself given the extent of the self-inflicted injuries I sustained.  All I know for sure is I managed to dislocate a shoulder, an elbow, a wrist, and two fingers – all in 0.2 seconds before I found myself face first into the driveway.  In the end I managed to destroy my ankle to the point that I still can’t get everything back in alignment.  All of the above mentioned dislocations, and a myriad of scrapes and bruises.  With all that I also slammed by back…the same back that is a few weeks away from fusion surgery…into my Jeep’s bumper.  I hit myself…I hit myself with my own parked car. Seriously?

So there I lay in the driveway, with my purse on my shoulder, cell phone, sweet tea still in hand (and tea not spilled), and my dignity splattered on the concrete. I ladies, and gentleman have talents beyond anyone on earth.

0

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.

0

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.

Image

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.

Image

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!

2

So You Have What?

So you wanna know what Ehlers-Danlos Syndrome is – Simply put Ehlers-Danlos Syndrome, or EDS is a defect in the collagen.  Collagen is the glue of your body, it’s found in your skin, organs, and connective tissues, virtually everywhere.  Those with EDS just don’t do collagen right.  How the collagen is affected varies by the type of EDS the patient has.  I have Ehlers-Danlos Syndrome Hypermobility, or HEDS.  In my case the faulty collagen mainly affects my tendons, ligaments, and skin.  It also affects my gastrointestinal tract, and minimally my vascular system.

I bet you wonder what exactly that means?  When your collagen in faulty it effects the body in a variety of ways, with EDS it varies according to what type you have.  In HEDS the faulty collagen causes our joints to be loose, and prone to dislocations and/or subluxations. I even dislocate joints when sleeping.  The easiest way to explain this is to think of the tendons and ligaments that hold your joints together as rubber bands.  In a normal person these rubber bands stretch nicely, but still hold the joints tightly in place, they stay nice and tight as they stretch out, and in.  In HEDS, our rubber bands are loose.  They stretch out wonderfully, they just don’t stretch back to hold everything together.   The severity of this varies greatly from person to person, even within families.  EDS is inherited, but it can also occur due to a gene mutation in a family that has no prior history of EDS.  HEDS can also cause digestive problems like GERD (or reflux), Irritable Bowel Syndrome, Delayed Gastric Emptying. It can also cause Autonomic dysfunction, Aortic Root Dilation, Mitral Valve Prolapse, and a variety of other issues.  We usually have skin like velvet, which is nice.  However, that velvet skin likes to scar funny so there’s that.  There are many other ways that HEDS can affect us, but I really don’t want to lose you just yet.

The primary symptom of HEDS is pain. Yep, pain is the number one symptom of HEDS. Those with HEDS suffer from Chronic Pain as a result of constantly injuring our joints.  This is from dislocations, subluxations, and we even injure our joints by just moving.  You see our joints don’t move like they should, so simple day to day tasks can cause micro-tears in our tendons and ligaments.  Most people with HEDS have had chronic pain since they were young.  We also suffer from Chronic Acute pain, meaning that when we suffer a dislocation, we are causing an acute pain.  Since we tend to dislocate or subluxate joints often, that acute pain occurs frequently, and is chronic. Many of us were not diagnosed until later in life.  I didn’t get diagnosed until my early 30’s, after my mother who was in her mid-50’s was, my grandmother had it was well and she was in her mid-80’s by the time we pieced it all together.  Most of us go through life seeing doctor after doctor, none of them really able to figure us out.  They may see us for a dislocation, reduce the dislocation and send us on our way.  We may see an orthopedic doctor for pain, but he doesn’t see anything on radiographs or other forms of imaging that indicate a reason for pain.  An EDS patient has to be looked at as a whole person, examined from head to toe in the way we move.  Even then the diagnoses is often missed.  Most doctors are simply unfamiliar with EDS, though
they have probably seen EDS patients and did not know it.  Many EDS patients go through life being told there isn’t anything wrong with them, it’s all in their head, they need physiological help, until EUREKA a doctor sees them that actually sees the hypermobility, and puts it all together.  It’s very frustrating, and once you are diagnosed it can be overwhelming.

Image

It’s My Friends That Keep Me Going

 

So, what is it like to live with HEDS?  I can only tell you from my perspective, and everyone is different.  Some people are effected less than I am, some more.  The way HEDS affects a person varies as much as individuals vary from one another.  That said, I will explain my life with HEDS.

I have no idea what it’s like to not be in pain, I really don’t remember.  I know I had many injuries in elementary school, middle school, and high school that landed me in a variety of knee braces, foot braces, casts, and the like.  I don’t remember if I was always in pain or not though.  I really can’t recall when I was pain free, meh…thems the breaks.  I’ve never really let it slow me down much.  I have had periods in my life when the pain was severe, and through some of those periods it slowed me down a little.  I know in my younger 20’s that caused some anger, and resentment.  I literally resented my body for a few years.  At that point I didn’t know what was wrong, and I’d had enough bad experiences with doctors that I quit going to them.  What I did do, was live fast, and probably not the best way.  I’m certain I did extra damage to my body by spending much of those years with a 65lb pack strapped on hiking, jumping out of air planes, learning to ski and surf the hard way.  Doing anything and everything that gave a good adrenaline rush.  I figured, what’s the harm?  The worst I thought that could happen is I’m going to get hurt, and I do that walking down the road.  As years passed by, more joints hurt, and I had more problems.  I slowed down, because my body basically said “screw you lady”.  I probably did more damage to my joints because I simply didn’t know there was a problem.

At this point I dislocate, and subluxate frequently.  My shoulders, wrists, and elbows while sleeping are an issue.  I’ve learned to sleep with wrist braces, should stabilizers were suggested, but we didn’t get along. I sometimes have to wear wrist braces during the day, sometimes knee braces as well.  My right ankle pretty much lives in a moderate support wrap to keep it in line as I have nerve damage from all the times I’ve rolled it, and I often wear one on the left ankle as well.  All of my joints hurt to some degree, every day.  It’s ok, I don’t want pity from anyone.  I can still smile, have a good time, and laugh my big obnoxious laugh.  Fatigue catches up with me often; I’m bad about pushing through it.  Some days I have to miss things I want to do because the pain and the fatigue are a little much.  I’m lucky to have friends that understand when I don’t make it out when we have friends, scratch that – I am beyond lucky to have the friends I have.  Sorry folks, but my friends are totally better than yours!  That said I know I have a long way to go to get my pain, and EDS properly managed.

Image

No More Party Tricks

 

So why haven’t I gotten this all under control?  One of the most aggravating parts of EDS is that there are so few doctors that know enough about it to help their patients properly manage the condition.  It’s not their fault, they get all of their connective tissue information over a short period of time, and most of that is spent on the conditions, and diseases they will see more often.  Sadly, at this point I have not met a doctor that knows more about EDS than I do.  This is why I feel it is extremely important for an EDS patient to educate themselves about their condition so they are well informed.  It is the single most important thing and EDS patient can do for themselves.  Many of us have to see several specialists until we find the right combination of doctors that either have a good understanding of EDS, or are willing to learn along the way.  Either way, it is imperative for the EDS patient to stay informed, and involved in their treatment.

So what does a friend, or family member of someone with EDS need to know: Your friend is the same person they always were, they just have a name for the condition that enables them to do all the fun party tricks they can do.  However, now that they know – they can’t do those fun party tricks anymore, no matter how much tequila is involved.  You need to understand that your friend will sometimes be in pain, or have significant fatigue.  Sometimes they may cancel plans at the last minute because their body just says no!  They don’t want your pity, they don’t want to hear that “you know how they feel”, and they don’t want any pep talks about eating better or exercising more.  These just are a fix for EDS.  What they do want is your understanding.  They want you to keep inviting them out, because they really want to go when they can’t, and sometimes they can.  If your friend can’t, you can always offer to come over with some grub, and a bottle or wine, or a mason jar of moonshine.  That way you guys get to enjoy each other’s fabulous company, and your friend doesn’t have to leave her sofa.  Plus it’s always a good time to play 20 questions, I have never, truth or truth, and many other bits of shenanigans. We just want our friends to understand that we can’t always do everything, but we always want to do everything, and we feel left out when we we don’t get invited. And never be afraid to ask questions if you don’t understand something, we would rather our friends know what’s going on than assume.  We are the same people we were before we were diagnosed, we just happen to have a funny name now for something that has always been with us.

Image

Some days our bodies say “NOPE”

Please never hesitate to ask questions here on Livingbendy.com, or Atlanta EDS Support Groups page on Facebook.  I will be happy to do so and answer as best I can.  You can also send questions to edsatlanta@classicone.com.