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.

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.

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.

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.

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!

EDS is Such A Pain – What Can You Do For You?

Pain is a symptom of EDS; it is perhaps the most common symptom of EDS.  However, EDS pain differs from the pain in other disorders greatly.  EDS patients not only experience Chronic Pain, but Chronic Acute Pain.  The term Chronic Acute Pain may sound odd, but it is a spot on description to one of the components to the pain an EDS patient suffers.  EDS patients suffer from frequent dislocations, and/or subluxations of joints.  These dislocations, or subluxations cause Acute Pain; but because they are suffered frequently they are a Chronic manifestation of Acute Pain, this the term Chronic Acute Pain.

One of the most important specialists for a patient with EDS is a Pain Management Physician.  These are Physicians that are trained, and boarded to help treat and manage pain.  Finding a good Pain Management Physician is extremely important for any EDS patient.  However, one thing to be mindful of is that to achieve maximum pain management you are going to need to forge a relationship with your Pain Management Specialist.  It is going to take time, through trial and error to find the best plan to manage your pain.  Additionally in this day and age of drug seekers, and the DEA becoming involved in our healthcare there will be obstacles for those patients that require narcotics to manage their pain.  Many doctors will require contracts and regular urine screenings in order to prescribe narcotic pain medications.  Many still will not prescribe them until a relationship is formed, and they feel they have an understanding of your wants, and needs as a patient.  There will also be some doctors that will refuse to prescribe narcotics to any patient that is not a cancer pain patient.  However, don’t give up.  Should you feel that you are not getting what you want from a physician, your best course of action is to speak with that physician directly, honestly, and respectfully.  Explain that you just don’t think that the two of you are a good fit, and could he recommend another Pain Management Physician that might be a better fit for your needs.  You must be careful to not just switch doctors often as you could quickly be labeled a doctor shopper, and that will get you lumped into the drug seekers.  So there is a delicate balance to achieve with a Pain Management Specialist, but once  you find one that fits you and develop a working relationship, great things can happen.

One important thing to remember with EDS pain is that there is not going to be a “one trick pony” to cure what ails you.  You are going to have to look at your pain plan as a set of percentages that add up.  Once medication may reduce your pain by 10%, and that is a win.  Physical Therapy may offer another 10%, and that is another win.  You are looking to combine multiple modalities of pain relief that get you the best possible outcome.  Here are some things you can do at home.  These are not medical advice, and should be discussed with your physician to insure they are ok for you.

Epson Salt Baths:  I love my Epsom salts, soothing, and you get magnesium for you that is important to pain relief.  You can also add essential oils to your Epson salt baths.  Sore tootsies from a day spent on your feet, give those toes a nice Epsom Salt Soak and add some cooling peppermint essential oils for extra relief.  When I’m feeling a little down I might add some uplifting Sweet Bay, or perhaps some Lemon which is a person happy smell for me.  Lavender is great to add to a bath before bed as most find the smell relaxing.  Chamomile is relaxing, and also considered to soothe muscles.  I prefer Aura Cacia, and they have recipes and educational information about their essential oils to find what is best for your needs. http://www.auracacia.com

 

Topical Products

 

Biofreeze and I are good friends; it is by far the best cooling product on the market in my opinion.  It doesn’t leave that grandfather balm smell, and nothing cools quite like it.  I rub it on my shoulders in the morning when I’ve subluxated, or dislocated in my sleep.  It takes the edge of the pain a bit so I can work it back out.

Po Sum On – you have to just love the name. “I’m gonna po sum on my hurt’n back”.  It’s actually a traditional Chinese treatment.  I love it; it has a pleasant herbal smell.  Here is a little info on it:

Po Sum On Oil is formulated with the following ingredients:

• Peppermint oil, which is used to alleviate headache, back pain and post-herpetic neuralgia when applied topically
• Dragon blood, the resin from Daemonorops draco, which is commonly used to promote blood circulation and tissue regeneration while relieving pain
• Cinnamon oil, which has warming analgesic qualities and aids in circulation
• Chinese camellia oil, which has been known to effectively eliminate chill and ease pain

Po Sum On Oil provides effective treatment for:

• Chest discomfort from coughing
• Itching from insect bites
• Joint and muscle aches
• Motion sickness
• Rheumatic pains
• Stomach ache caused by chills

Directions:

• Apply Po Sum On Oil to affected area not more than three to four times daily.
• Po Sum On Oil is suitable for adults and children over two years old.
• Do not apply on open wounds.
• For external use.

 

Zostrix: This is a capcasin product.  There are many on the market, but I’ve had the best success with Zostrix.  I use the HP (high potency) product.  This is not for everyone; some people are more sensitive to it.  When you first start using it, it can burn a little – almost like a sunburn feeling.  But, with repeat use it has helped my nerve pain in my foot a great deal, as well as some pain I have in my quad.  Some studies show that it deadens nerves, which if you have nerve pain can be a huge win.

 

Hot and Cold Therapy

 

Heating pads – These are good for just making things feel better.  They should not be used on acute injuries.  They should be used with caution as well.  Long term exposure to low level heat can cause Erythema ab igne or toasted skin syndrome.  This is something people get from heating pads, heated seats, and from lap tops.  It can cause a permanent rash, and some studies show that it can increase your risk to certain skin cancers.  That said, with proper and conscious use it can help reduce pain.

Cold Therapy – great for acute injury to reduce inflammation.  It can also reduce pain.  Sometimes nothing feels better on a sore muscle than a nice ice pack.  I use them on any acute dislocation/subluxation to help reduce any inflammation.

 

One thing many with EDS get that can contribute to pain is tight muscles, and muscles spasms.  Having a good stretching protocol is helpful, or doing lite yoga – being mindful of your body’s limits is very important.  Don’t wait until your muscles are so tight that it takes a few weeks of work to get them supple again.  Keep them stretched, hydrated, and healthy.

 

Two new things I have been trying that have shown great promise.

 

Trigger Point Therapy at home using the Trigger Point Manual I got on Amazon, with a knobble as well, and the back buddy junior.  I have found this has been helping as I get into it more, and use it more often.  I had one area that was a constant bother in my lower, lateral leg.  I’d say I’ve had about a 40% reduction in bothersome since I have started using this.  Book: http://tinyurl.com/lc3j3mo  Knobble: http://tinyurl.com/m6msybe  Jr Back doodle-ma-flotchy: http://tinyurl.com/k5tf6tx

 

I’ve also been using the Giam Hand and Wrist Balls, they work well with the trigger points, the melt method, and for gentle wrist and hand exercise.  I love these little guys: http://tinyurl.com/ktg6t5v

 

And my newest addition is The MELT Method.  I’ve read great things about it, and I’m looking forward to putting it into practice.  The theory is interesting, and I have heard from some that use it that have been very happy with it.  You just have to make sure that the foam roller you get is soft. http://tinyurl.com/mdltczl

 

So these are just a few ideas for tonight.  I will of course add other things along the way.  What works for you?  What tricks do you use for certain pains?  What other information would you like to see on this blog?  Please leave comments to let me know.  Also, if you ever would like to speak with me personally you can contact me through edsatlanta@classicone.com

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.

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.

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.

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.

The Snowball Effect

Ugh!  So, I’m kind of at the end of my rope with pain at the moment.  I hurt my back at work back in January resulting in one orthopedic telling me that I will need a single level lumbar fusion.  I’m currently waiting to see another physician for a second opinion, since we are talking about major, life changing surgery.  I don’t remember what it’s like to live without constant pain. I’ve grown accustom to it, I have learned that I can still laugh, smile, and be happy when I’m in pain. My pain has never been managed as well as it could, I’ve just not found a doctor yet that has been willing to pull out all the stops, try anything, let’s be aggressive, let’s take this pain by the horns and show it whose boss.  It’s always have this stuff that supposed to be for nerve pain, and have an anti-inflammatory.  Would you like some steroids with that? No? Ok, carry on see you in a few months where we will do nothing but talk about the fact you still hurt, and I’ll renew those prescriptions you have now, they help a little, that’s good enough…run along now.  Rinse, repeat.

I’ve always had trouble sleeping, by nature I am a night owl.  Toss in 20 cups of insomnia into a mixing bowl of pain, and stir with a body with joints that flop around like a dead chicken and you have a lady who’s had issues with insomnia since she was a young girl. It’s never been a pretty picture. Which is pretty sad considering how much I love to sleep.

Now, I have this ridiculous back pain on top of everything else. I’ve had no improvement, and now the pain is getting much worse.  I already had nerve pain through my buttocks, and thighs and some localized pain.  And of course there was my old friend, everything else hurts, and that’s the way life is.  Then all of the sudden last week this new turd shows up to crash the party.  Have you ever had a side stitch?  You know that sharp pain you get in your side when you’re running? (I know who the hell runs with EDS unless a damn bear is chasing them?) Well, should you have had the privilege of meeting a side stitch at some point in your life, multiply that by about 20 and toss it into your lower lumbar spine.  It’s constant, it won’t piss off and the only medication I’ve been given in 5 mg hydrocodone, despite the fact I’ve explained that hydrocodone does absolutely nothing for me than occasionally make me itch. But, then again I asked for Rozerem to help me sleep and I got Temazepam.  Apparently it’s supposed to make you sleepy.  It takes the edge off my overwhelming urge to scream loudly while throwing blunt objects at random people, and while that is actually a huge plus…it’s not exactly rousing my inner sleeping beauty.

And, for the big finale my joint laxity has gotten about 200% worse.  I’ve always worked very hard to keep my muscles strong.  I don’t lift weights, but passively I make darn good, and sure that I remain strong.  Unfortunately, for the past 6 months I’ve been unable to do much of anything but read, type, play some video games, perfect the art of cuddling with 2 Pit Bull mixes and a Chihuahua on a sofa, write 3 blogs.  Needless to say, I’m losing muscle like a stripper loses clothes on the catwalk.  I now consider it a win if I’m lucky enough to fall asleep at all, never mind the fact that should I make the fatal mistake of rolling over on my side, whatever side that is…it’s a goner, that shoulder is on the first train to dislocation station.  I now have to sleep with wrist braces on, unless I want to have wrists that feel like they’ve been visiting Dante’s new pad.  My foot, and ankle that already had nerve damage in them have to live in a brace or all those fun ankle bones do the tango…backward.  I now have the honor of elbows that dislocate, yeah a new dislocating joint.  Happy birthday me. Interestingly enough it actually started happening on my birthday.   My hips are worse than they’ve ever been, and my knees and I…well, we aren’t on speaking terms right now

I am terrified that this is going to be my new normal.  I am horrified at the prospect that I’m not going to be able to get back to where I was.  That all of this waiting, that this whole horrible back injury is going to put me in a place with my EDS that I can’t come back from.  I hurt so bad that I literally can’t deal.  I’ve been up for almost 36 hours of non-stop, severe pain. I tired, I’m cranky, I can’t get comfortable, the pain won’t let up, and I’m realizing that in just 6 short months my body has just fallen apart.  All I want is 1 week worth of proper pain management, 7 nights of good sleep…oh, and I want my body back the way it was. I’m powerless.  Through this entire ordeal I’ve been powerless.  I just have to be a good girl, stay quiet and wait while my body falls apart, and quite possibly my life.

Ok, pity party over…well, at least the out loud version.  Gah, this pain makes me want to suck start my shotgun.  Ok, pity party out loud is seriously over.

Dear Drug Seekers,

Dear Drug Seekers,

I wanted to take the time to thank you for what you have managed to accomplish.  It really is somewhat of an amazing feat when you think about it.  You have managed as a group to have such an overwhelming effect on healthcare that impacts so many people in such a negative way, that I am certain there is now a special place in hell for all of you.

I know that alcoholism, and addiction is a disease.  I am more aware than most having lived with, and loved an alcoholic for a time in my life.  I have lost many friends to addiction, and have seen many battle it for years.  It is something that grips you, and does not want to let go. It destroys families, and lives.  I am more sympathetic than most to your disease.

However, I wish you could have kept your horrible disease out of doctor’s offices.  You see, I suffer from an invisible disease that brings with it chronic, and debilitating pain.  I look healthy, and to most I seem healthy.  Under my smiles, under my generally well presented façade is chronic, never relenting, ever present, pain.  I don’t know what it’s like to not be in pain, I don’t remember a time where I was not in pain.  I have been in pain every single day of my life since I was a child.

It used to be that when I needed it, a doctor would be happy to write me a prescription for pain medication.  I’ve never abused it; hell I’ve probably thrown out enough expired pain medications to cause an addict like you to have a total breakdown.  I only take them when I absolutely need them, when I’ve reached the point that suck starting my shotgun seems like a truly viable answer to my problem.

Now when I need pain medication it takes a god damned miracle to get it.  Doctors are fucking terrified to prescribe it, and the people who really need it are just as terrified to ask for it.  We don’t want to be labeled a drug seeker, that’s not who we are.  We are people who live in constant pain. We are people who need to have pain medications.  We are careful how we use them, and we only ask for them when we truly need them.  Thanks to your lot we now barely have access to the medicine that we need.

You are the reason I have lost so many precious hours of sleep, days where I am up for 36 hours or more.  Days on end where I am lucky to eek out a few joyous hours of sleep, 2-3 at the most.  You have made my life worse, you have taken joy from me, and you have in some cases taken my dignity from me.  I didn’t ask for this horrible disease that leaves me to suffer in endless pain.  I never did anything to you.  You have done irreparable harm to me, and so many others.  You’ve done harm to the medical system that I’m not sure can ever be repaired.  You’ve denied me the medications that ease the pain a little, that take the edge off enough that I can clean my house, go for a walk, take my dogs to the park, or meet my friends at a museum.  You can’t fix that; you can’t give me those hours of sleep back.  You can’t repay me the joy you’ve stolen.  You can’t go back in time and given me those days I couldn’t get out of bed back.

So figure it out, get clean, and do something, anything.  But, don’t you dare go to a doctor’s office to get your fix.  As an addict you’ve done enough damage to your loved ones, what the hell gives you the right to make the life of someone you’ve never even met worse?  Just who the hell do you think you are?  You are selfish, self-serving, lacking all forms of awareness of others.  You don’t even realize how far your hideous disease reaches, beyond your family, and friends.  No, it wasn’t enough for you to ruin the lives of the people that love you.  No, not you; you had to figure out a way to ruin the lives of people you never met, people who already suffer in silence every day.  So, again I say – there is a special place in hell for you my dear drug seeker.

Sincerely,

The Bendy Belle

Chasing sheep

This is how I feel, Lily however finds that sleep comes easy.

Things That Stay With You

There are some things that stay with you, even though you should let them go.  I know I shouldn’t let negative encounters rent space in my precious little head, but sometimes you just can’t evict them.  For some reason they just stick with you.  Two incidents with people that I considered friends still get to me today.

The first was with an ex-boyfriend whom I had remained friends with.  He mentioned to me once that he thought I was a hypochondriac, even when we were together.  I’ve never been a sickly person; I don’t get colds often, or the like.  I also don’t complain often to people, I know they don’t understand, and I know they don’t want to hear it.  He and I were together before I was diagnosed with HEDS, but long after I suffered from chronic pain.  I’ve never been able to sleep on my right side, as it is very painful.  I also have considerable amount of trouble getting to sleep because of pain, and often toss and turn.  And that is what he was referring to.  I was gob smacked when he said it; I was hurt, angry, and confused.  Our friendship was lost that day, he refused to listen.  He was right in his mind, I was a hypochondriac, and what was I to say? I didn’t have a diagnosis, I only had chronic pain.  He couldn’t see the pain, he couldn’t feel it, and I didn’t have a reason for it.

So then I wondered is this how others see me?  If I complain about the pain will others feel the same way?  I already go out of my way to not complain, to not let on to the pain I feel every day.  And at that moment I ceased all together.  I’d already had doctors insinuate that it was in my head, and now my friends as well.  So for several years I never made a peep, I didn’t tell anyone, I didn’t tell doctors, family, or friends.  I suffered in silence with my pain.

Several years later, and after I had been diagnosed with HEDS another devastating encounter with a friend occurred.  A large group of us had gotten together for a bbq, and good times with friends.  The girls were all talking about training, and running charity races.  I made the mistake of joking that I wish I could, but at this point if you see me running there’s a bear chasing me.  One of my friends started lecturing me that I just needed to do it, and to stop making excuses, if I started working out I’d feel better.  I tried to explain to her why I couldn’t and she let into me that I was just making excuses.  It got heated quickly; I left the BBQ in tears.  Our friendship has never been the same, and we’ve become more of acquaintances at this point.

It was at that point that I decided to never mention my EDS again, and I didn’t for at least 2 years, closer to 3 years.  I never mentioned my illness, I didn’t speak of it, and I didn’t tell anyone.  When I had a severe dislocation I drove myself to the emergency room.  When things hurt, I sucked it up, and moved on.  If I couldn’t deal then I just shut myself off until I could.  I just ignored the EDS, coped with the pain, and suffered in silence.

In hindsight, my reactions to these events could have been more constructive.  But, EHS is a lonely disease.  People don’t understand it, they can’t see it, and no one has heard of it.  You can’t see Ehlers Danlos, you don’t look sick.  Any disease that causes chronic pain is a lonely disease.  Unless you’ve lived with it, you can never understand just what it is like.  I’ve learned now that I can’t remain silent, not because I need to complain, but because I need to spread awareness.  I need to be a voice, and I can do so as long as I surround myself with supportive friends.  It may have taken a few disasters for me to learn how to be a voice, and how to accept that not everyone will understand….and that’s ok.

The Hide, And Seek Of Finding A Doctor

Finding a doctor that can properly treat, and fully understand Ehlers Danlos is literally like finding a needle in a hay stack.

It frustrating beyond words.  I have found that there are generally four types of doctors when it comes to Ehlers Danlos/EDS:

1. Doctors that say that they know about EDS, and/or have treated someone about it.  Then you realize through being treated by this physician that their knowledge is very limited, and they would never admit this.  This can be a dangerous, and on occasion painful.  People with certain types of EDS do not metabolize medications normally.  Most are very slow to respond to pain medication, and many are more resistant to them.  Overall we do not metabolize medications as expected, and have sensitivity to many drugs.  Many doctors don’t seem to get this through their skulls, and don’t always take to heart when you say “Are you sure, I tend to be very sensitive to “x” types of medications”.  They assure you it will be fine, and next thing you know you wake up in the bathtub with no recollection of the past 15 hours.  EDS patients are extremely tolerant to local anesthetics, the “cane” drugs they use to numb you, and usually require up to double of the normal dose.  So there you are getting your tooth drilled, and ZING!  It really is a fun time.  I just wish they could understand that it’s OKAY to admit you have limited knowledge, or experience with EDS.  The vast majority of EDS patients have heard it, we kind of expect it.
2. The doctors that openly admit that they do not know much about it, and/or have never treated anyone with EDS.  However, you soon realize they have zero interest it becoming educated about it.  Since it’s rare, you are the only person they know with it, there isn’t much need right?  What’s the worst that could happen?  Well, see above as that gives some indication of some of what can go wrong.  The kind nurse/or doctor might try to be helpful and help you move to the position they’ve not clearly explained they want you in, and now you have a dislocated shoulder….great…thanks…I was going for an all-time record of not dislocating that shoulder and you sir ruined it.  Not to mention, duh….I have EDS, I am coming to you as a doctor to probably help me with an aspect of it.  If you aren’t interested in learning about it so that you can properly treat me, how about to just tell me so that I can find another doctor instead of wasting my money and time until I realize it?
3. A wonderful group of doctors that let you know that their knowledge is limited, but they are very open to learning about it.  I now carry a list of links for doctors to look through, as well as a book written by an EDS specialist for them.  I’ve had exactly one doctor fall into this category, and I love him for it.  A doctor that is willing to admit their limited knowledge, and are open to learning from a patient is a very special and wonderful thing.  These doctors also tend to have a good bedside manner, and talk to you like an educated adult.
4. The very rare, literally probably 1 in a few thousand – the doctor that actually knows a good deal about EDS or at least understands it enough for the specialty they work in to treat you.  I’ve only met two of this group, one on pure accident and one through begging, questioning, and researching.

There is one other group I have not included, mainly because I have yet to find one.  I know they exist, there are a few up North, and in the Midwest that I am aware of.  Those are the doctors that can be considered specialist.  They are the ones that have written information, books, and/or contribute to the knowledge base of EDS.  They are mythic creatures to me at this point.

Over time, trying to find a doctor that can really treat you becomes something that induces rage.  Luckily there are a couple of great foundations that have great information.  People with EDS, no matter what type have to research; they have to become experts on EDS.  They also have to become advocates.  This is something I struggled with, but will explain in another post.  I’ve also come up with a list of questions that I now use to screen doctors that I will share in another post.  This post, well….it’s mainly about venting.