Posts filed under ‘Ehlers Danlos Syndrome’

The “countdown” begins

The first meaning would be what “Type 7 or VII” is.  The countdown mentioned is to the usual timeframe; over 64 hrs old, that type of Ehlers-Danlos Syndrome, very close to 0% chance that I’ll live longer, especially due to the combination of weakness and being unable to even partially ‘defend’ myself because ‘it’s not a very serious disease (especially since it’s from so long ago).  The ‘defense’ failed utterly. And it actually is a better idea to take care of someone younger first.

 

I’m also taking ‘antidepressants’.  For bipolar, right?  No.

For epilepsy (also often also used for the treatment of depression).

April 17, 2018 at 5:33 pm Leave a comment

Sorry, some days

off in RL (Real Life, gamer term).  Doctors and transporting someone who doesn’t drive, a momentary imitation of a conflict with someone–I bowed out.  I don’t play that game of chairs, still.  I didn’t when I was 3 years old and I don’t now.  More people than chairs; go stand in a corner.  Beat the process.

 

Not talking about RL issues just now, thank you.  It’s a degenerative disease.

November 29, 2016 at 11:00 pm Leave a comment

Brevity of Posts

And their scarcity; I have Ehlers-Danlos Syndrome and at times find concentration difficult with continuing pain.  Which I like talking about less as time goes on because, for one thing, I have to do it more.  I was also brought up in a military family for quite a while.  I went through boot camp and had open blisters the first day, infected feet the second (due to boot camp first aid), and bleeding feet for the remainder of thirteen weeks.  You march in boot camp, by the way.  You stand at attention (I have a damaged vertebrae that attests to that; my company commander told the company to ‘break’ me and the way I was brought up I had to win).  At some point mentioning it except just like this except out of necessity privately is senseless.  I’m not actually unresponsive.  I have Type VII.  Sorry.

November 23, 2016 at 6:43 pm Leave a comment

Back on The Road Again

I have, since my last entry:

 

most tellingly, not written in a blog for which I pay.

Met my father’s daughter.  That doesn’t sound like much, but then I’m illegitimate and from a somewhat horrible family on my mother’s side.  I grew up with…a great deal centered around that, by other people.

My Suburban was so violently rear-ended by a Honda Acura that it did around $10k worth of damage.  Yes, of course the Suburban was drivable.  (That’s actually complete false in its assumptions and premises, by the way.)  It was nearly perfect before.  There were scratches on the plastic, before.  Now it’s a bit surprising the rear door still lifts.

Had the Ehlers-Danlos Syndrome VII confirmed.  Had the rarity of my severity confirmed.  Had the rarity of my ‘condition’ confirmed.  An epileptic with EDS and PTSD (and narcissism by the at least preliminary reports of their psychiatrists and mental or Mentat specialists).  “Oh, no, that is very, very rare” she (“they”) said when I mentioned the timeline of around 70.  Mind you, they’d been telling me how rare my case was from the moment I walked in.  Throw in whatever the Navy saw (and I was at least the most ____ man in the Fleet, but according to the bloody testers one of the most _____ people in the world; I think ______ translates to “destructive” in real terms).

 

All the signs of it.  And on the way back so violently rear-ended I’m still suffering the after-effects; that was Monday, this is Saturday, and the first time I’ve been able to write at all.  I don’t mean from shock over the Suburban I do mean from Blunt Force Trauma.

Tried to drink and threw the bottle away unopened.  Now that’s bad.  I simply don’t drink.

Attempted to start moving toward publication again and was stopped but I think I’ll be able to do it soon.

 

And the pain in my neck (which has led to a headache ever since the accident) has prevented me from doing nearly anything except weak physical labor.  I move my neck or head or something and it becomes so painful I can’t think.  And I was driving a fucking Suburban and I’d just been given a damned death sentence.  Soon.  Yes, I have luck.

 

Certainly I was at fault.  I was driving in one direction in one lane following at the proper distance and paying attention to absolutely nothing else.  I have his name and address.  I’m half-tempted to drive up there and kill him.  Writing this down and putting it on the Net ensures I won’t.  Mind you, I haven’t put name and such down, either.

June 18, 2016 at 8:08 pm Leave a comment

Honesty and Autobiographies

I suspect I’ll start doing just that on (one of) my other sites on LiveJournal.  The honesty will and must be tempered a bit because of self-interest.  If, for instance, I knew the name of a person who took or almost took the thousand-mile swim to port I’m positive I wouldn’t repeat it and assuredly wouldn’t point to myself as cause, forty years separation + or not.

 

However, I made a deal with something or someone.  The way that worked out is that I’ve survived things that are supposed to be fatal.  Since the latest thing is the prescribed medication I’ve been taking for seizures (to prevent them, to make that clearer) should have killed me in four years.  I use an exact timeframe because that is what was used by the doctor who prescribed it and who told me to not look at the warnings, because I’d just get frightened or depressed.  “This is the first time I’ve done something like this, Glenn, but I don’t know what else to do.  This is too much of this medicine and it will damage your liver.  Never take acetaminophen (the anti-seizure medications are loaded with it) to hold it off a little.”

 

Four years would have been 2009.  I show the effects of the overdosing; internal bleeding is the main one.  I should have unusually weak bones and don’t; however, the medicine greatly intensifies the effects of Ehlers-Danlos Syndrome both in theory and practice.  To translate that in other terms, too; I have a lot more pain because of them.  But then I wouldn’t feel at all theoretically if I didn’t take them, and I’d much rather die than have another seizure.  I have been to Hell, and I didn’t like it.  As far as the Hell in the Bible I’m agnostic; as far as what I experience during and post-seizure I know without doubt, and much more than I’ve told or been able to tell.

 

For now, yeah, the pain is getting worse…I also had 45 minutes without pain for the first time since I was 33 on February 29 (2016).  The return of it nearly killed me.  Oh, well.  Shit happens.

March 28, 2016 at 12:07 pm Leave a comment

Ehlers-Danlos Syndrome

Searched for a cure yet again; yet again there’s none.  The pain increases daily, though each night I go to bed somehow thinking it couldn’t get worse.  Pray for me, to an unknown God?

June 8, 2015 at 3:03 pm Leave a comment

EHLERS-DANLOS SYNDROME

There is only one thing to do; keep on going.

If you are a child, teenager or young adult I am working on an exercise program that will help avoid some of the worst problems ahead.

If you are diagnosed with it wear boots or ankle supports; preferably boots.  Do some sort of exercise to strengthen your wrists which is hard enough to be painful; you’ll need to do the same thing for your ankles and major joints.  Avoid placing transverse pressures on your back or carrying overly heavy loads.  If you run you MUST RUN ON YOUR TOES not your heels or you will instantly begin heavily damaging the cartilage between the vertebrae in your back.

One other thing–no, two.  Good luck.  And guess how I feel today.

May 18, 2015 at 11:21 pm Leave a comment

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

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.

May 6, 2015 at 5:04 pm 1 comment