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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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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.

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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.

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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.

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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.