Ehlers Danlos Syndrome: About What it Is and Isn’t

May 6, 2015 at 5:04 pm 1 comment

Ehlers Danlos Syndrome definitely is in a sense one of the ‘invisible diseases’.  I mean, who hasn’t laughed at that double-jointed kid?  Who would have thought that pain might be connected with those same stunts even then?  If you’re really strange either you use it in your favor or others use it against you.  That one I had covered.

Why does it hurt?  You start out, as far as I know, either with cartilage that doesn’t do what it should or with less of it.  It really hurt to learn to walk, something that no one understood.  Everything was rubbery, and I know it was passed off exactly like this; “Oh, he’s just a baby.  All babies are like that.”  After a while it would have been transformed to “Oh, he’s just lazy.”  I found out the attitude by way of the inevitable sprained wrists and ankles and it was more and more one of blame.  I didn’t dare say anything about the pain or I was being a baby, and they told me it was normal.

During this time we lived in Japan for two years and I had a Japanese instructor.  He was a black belt in something.  He taught me extra things.  I didn’t speak Japanese, he had little time/he wasn’t supposed to teach me outside of class.  Like all teachers except one in college he thought I was exceptional, for some reason.  He taught me the rudiments of mastering my own body, and how to learn further.  I don’t think he told me–I don’t think he had to tell me–that the rest of the learning had to be between my body self and my spirit self.  I have even forgotten the Japanese names, and those English translations are terrible.  I can perform many of the ‘magical’ tricks of the wise men of the East, such as that is termed.  I have stopped seizures (of my own) more than once; I have driven a car after several (long ago).

I have Type VII, by the old nomenclature.  My eyes are sensitive to bright lights (yes, like a vampire), I bruise easily and shouldn’t heal from that well at all, I’m finally wearing braces.  I was told that I would be wearing braces all the time by the following year a few years ago.  Let’s see, that would have been 1968; I finally began wearing them this year.  I forced healing for that long, and I obviously forced some sort of maintenance.  I shouldn’t have been able to walk after 50; I’m 61.  The medical professionals I see haven’t seen anyone with a case of my severity at my age still walking.  I even exercise.  I have no cartilage in my spine, to speak of, which means that it moves around a lot.  It was calcified but a doctor bet me I couldn’t stand up straight.  I said “Wait a minute”, sighed–I’m sure I shrugged physically as well as mentally–and stood up straight (I hadn’t realized I’d grown to be a hunchback).  You could hear the crackle.  I sighed again and let my eyes blank a bit, saying “Just a second, here” as she screamed at me “Don’t you ever do that again!”  Let’s not mention the days I was walking on an unhealed compound fracture (it was in a cast) while not using crutches so some fucking VA doctor couldn’t cut my leg off.  He’d already overdosed me with Haldol and I should be permanently impaired by it.  I know I was overdosed because I read the PDR that was…at his desk.  He left the room and I looked it up.  My hips and shoulders are prone to sublocation.  There are inherent eyesight problems that have to do with the disease and the fact that it has an effect on the ability of the cell to exert certain kinds of control over the passage of fluids through membranes (getting glucose and oxygen and getting rid of waste; cell permeability).  The ability to process collagen is nearly nonexistent.  I should have rotten teeth and have no cavities.  *I can’t eat junk food, basically.  Very occasionally my body will allow it.  On the other hand, I can eat dessert.  I’m doing well to stay at more than 150 lbs.  I am according to both scale and doctors extraordinarily fit.

And I cannot imagine what it is like to not be constantly in pain.

I have ‘nerve blocks’ in place.  This means that I can’t feel pain below a certain threshold, although hopefully sensitivity isn’t reduced (in effect it is, unfortunately).  I will not feel blisters on my feet.  I need to remember to start checking them again, and then do it forever.  Don’t know about bruises or scratches.  I hit my shin getting into the car the other day, hard.  It was more of an itch than a sting.  I have a prescription, yeah, of oxycodone.  Ten milligrams, been that way for well over a year now.  I also deliberately didn’t use them for five days recently and…the overall pain was just worse.  In fact, the lack of sensitivity to ‘minor’ damage was becoming obviously pretty serious.  Then I dropped the nerve blocks.

I would not be moving if I weren’t a zen Buddhist (I do not teach and I do not generally discuss this) and had I not learned to hear my body and to speak to it.

Unless you are a doctor and have done specific research on the subject of Ehlers-Danlos Syndrome I know a great deal more about it than you do, especially on the subject of mind control.  If you are a doctor and don’t know about it (the usual case) or have heard of it, or something of the sort–see above, and see that I initialized this paragraph with an AND statement; you failed the latter part.  This is experience talking.  Your generalized response with an Ehlers-Danlos Syndrome victim is going to be exactly the same as with a normal ‘healthy’ person; you will take any reference to it as internet-inspired hypochondria, and any symptoms as either the result of that or more likely some sort of drug-induced self-harming ritual.  With me, because cases like mine are so rare, my most probable cause of death will be ignorance, especially because I’m also epileptic and suffer from PTSD.

I have received a great deal of advice about EDS (much as I dislike acronyms I am known to use them) in the past few days.  None of it has been pertinent.

As far as the ‘magic’ to which I referred, it’s the common tricks I meant.  You either know what I mean or don’t.  That part of my life is not open, at all.  I don’t teach and I don’t display.  If I allow my concentration to be distorted (yes, that is what I mean to say)–just as an imperfection in a lense can greatly distort a magnification–it could kill me.

Entry filed under: Ehlers Danlos Syndrome. Tags: , , , , .

Re-Enactment Budgeting

1 Comment Add your own

  • 1. samwise davies  |  May 12, 2015 at 5:59 pm

    I’m having problems with the current format here so…no, neuroplasticity surgery won’t do it. It’s a problem processing collagen, building block for cartilage and tendons. Also the disease affects the way fluids are retained within cells and passed through cell walls, as well as strongly affecting the immune system.

    Reply

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