Realization

This sudden and alarming loss of strength and control of my limbs, and even unsteady gait, combined with extreme discomfort in my neck and sometimes lower back, has me wondering what the next step might truly be.

I devoted all of today in researching what I have, and to my great surprise I emerged from the rabbit hole with a rabbit.

The rabbit has a name: Ehlos-Danlos syndrome, or EDS.  I arrived at this by filling out some standard forms that rheumatologists utilize, and found myself right in there amongst ’em.

This explains the extreme paper thin skin that tears if you use any kind of tape, Tegaderm, anything.  It tears off in sheets, splitting just at the level where the pain nerves are, and the wounds take weeks to months to heal, leaving horrid scars.  I have several scars from blood draw needle sticks that make me look like an effin junkie.

Speaking of which, I would fail terribly at being a junkie, because my veins have become fragile, like my skin.  IVs last minutes, if the nurse can even find a likely looking vein.

“That one is blocked from a previous disaster,”  I remark, and move my arm so that she’s not tempted to, “Well, that doesn’t matter, what YOU say.  Just watch me!”  Uh, no.

“That one has a valve in it (which makes them either clot or blow up)….”  “Tsk!” She runs her finger along the vein, watching it collapse and fill again.  OK, score one for the annoying patient!

“That one rolls terribly,” I observe.  “It’s good to hold it in two places so it won’t try to get away from you:-D” humor is always good, yes?

She snorts, throws down her nitrile gloves, and stomps off muttering about sending someone else in, this is over her head.  Well done.

Then there are the veins themselves.  I do not know how, first of all, how vascular access could be accomplished, for purposes of surgery.  And I am not at all sure of the wisdom of pushing and pulling at structures like the arteries in my spinal column, or even my jugular vein and carotid artery.  I don’t want a stroke from a leaky artery or a blood clot from a stressed out vein. 

So that leaves the question: am I even a surgical candidate?  And if not, what can be done to keep me walking and talking and writing on this touchscreen with one finger?

As I was wrestling with my nightgown it occurred to me:

My goal is to learn my deepest essence.  I like who I have turned out to be, with some notable exceptions. 

And I’d like to devote time to really listening deeply, and having understanding of the spirit that was injected into this crumbling body.

If I can understand that, it will help me to manage the coming events, whatever they turn out to be.

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17 Comments

  1. Are you sure? EDS? When do you see your doctor? Sending you love and hugs.

    Reply
    • 4 out of 6 on the criteria. 2 is diagnostic. I had been puzzled about the vascular fragility, and then my skin started doing weird things. It started when I was in Israel, after I got a bizarre strain of CMV that was going around, got a GI bleed, they couldn’t keep an IV in me because they kept blowing. There is a form of EDS that is subtle and often is kindled by an acute serious illness. I had been diagnosed with a collagen vascular disease since age 15, troublesome on and off, treatments worse than the disease and not disease modifying, and I have a high pain tolerance probably from abuse (you know about that!), so I have just gone about my business as best I can, punctuated by surgery. As a child I thought it odd that other children could not run around in a backbend like a spider, or stick their heads out between their knees backwards, or do the splits, or bend their thumbs back to their wrists, all this hypermobility things that go along with EDS. I had forgotten about all that until I started vainly searching for vascular fragility syndromes. All I came up with over and over was collagen vascular disease, OK, I have that, but what? So I kept landing on these EDS articles that in addition to the late spinal sequelae, also spoke to the skin weirdness and the fact that it makes surgery a challenge because the skin just comes off in sheets (mine does), and sutures don’t hold. I can’t even have a piece of paper tape on me, it will take the top layer of skin right off, leaving a wound that might take a month to heal, exactly like a burn. Just normal daily life causes broken veins and deep hematomata. So how the hell are they going to push, pull, or even touch the vessels around my spinal cord???

      As for when I see my doctor next, this one has flunked out, thanks to his lackadaisical staff who don’t return messages. I’ve been trying unsuccessfully to make an appointment. Thank goddess for a friend in Israel who pointed me to a spine center in Denver. My mission for today is to collect all my recent imaging and FedEx it to the Denver people. Once they look at it, they said they will make the necessary referral to rheumatology.

      There, ask a question, get a book! πŸ˜†

      Reply
  2. When your body starts to deny you, life gets a bit rougher. I feel you on the vein thing. I don’t have your issues, however usually get to enjoy 3 sticks and some digging b4 my vein will give up the goods.
    You’re in my thoughts!

    Reply
    • Oh no! I’m really, really, really sorry to hear that. I started my medical life as a hematology tech. I have “good hands,” so I was always the one they called after some poor sucker had already been stuck ten times and was shaking and crying. I don’t know why they don’t just look at someone and say, “shit, I can’t get this,” and call the right person the first time. Or, imagine, they might listen to the owner of the veins! I used to get called to the ER to draw junkies. Shit, I just handed then the butterfly and torniquet, waited for them to hit a good one, attached the syringe and away we go. One guy, the only vein he had was the dorsal vein of the penis! Well, you gotta get creative and use what you have…😞

      Reply
      • Oh, where have you been all my life! I was always told it was because I was lean. Riiiight. Haha! But seriously, I had them in my ankle once. Antibiotics are hard on veins (Salmonella) blew thru all the good ones.
        Lately, I’ve had a nurse get me twice in past 2 years in 1 shot. This had never happened. Usually neonatal came by to see me πŸ˜ƒ they were usually lucky.
        Ouch. Penis IV. No, not Penis the fourth! πŸ˜ƒπŸ˜‚πŸ˜…

        Reply
  3. Oh, Laura. I feel the angst and pain in every word. When are you going to be back on the East coast?

    Reply
    • Thank you, my gal of the hollers and hills. East coast? If I am still alive, I’ll probably be back in August (arrrrgh, heat and humidity!!!!!) for my little boy’s dissertation defense, tentatively set for August. If I’m there, we should meet for coffee and moonshine howling! Ever go up to Grayson Highlands? The most beautiful place in the world. If I were able bodied I would make my home there. It’s not a physically easy place, but last time I was there I simply crawled around.

      Reply
  4. I send you my love and hold you in my prayers.

    Reply
  5. Laura, I am amazed at how you can carry on with so many physical problems. I mean your last blog I read but could not comment coz I did not know what to say.

    I hope your Guru and your tradition gives you the strength and the grace to carry on your karmic path. Who else can we look upto?

    God bless you

    Reply
  6. hey my friend. Sorry to hear about the latest diagnosis quandary. My thoughts are with you. I hope the people in Denver are able to help you. You have been through so much. sending gentle hugs

    Reply
  7. I love how you ended this Laura
    Seeing the lite in all of this is quite remarkable
    Big Big Hugs
    Stay focused
    I am always here
    Lol Sheldon

    Reply
  8. There are times indeed when the spirit is the strength of our life, and the body is merely hanging around and trying to catch up.

    Still praying for you. Xxx

    Reply

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