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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!

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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

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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.