Wednesday, March 02, 2016

Blast the air...

I admit that for many, many, many years I have worn long sleeves and ankle-length skirts because I have (am still am) deeply ashamed of my body.  I have not wanted any real hint of my shape showing, not particularly liking my female parts either.  That has not changed.  However, why I wear ankle to wrist clothing has.  Yes, it's another malfunctioning part of my body.

I have asked the cardiologist to explain.  And he has.  Twice.  But I still cannot quite grasp the bodily function that is malfunctioning.  I want to ask again on my next visit.  However, I know it has something to do with vascular function, contracting and expanding and warming skin.

I have written many times about having a chill here, but I still believe I haven't come close to truly describing the problem.  My wonky vessels is the reason behind the Raynaud's.  And it has much to do with the swelling in my legs, even though I worry more about heart function in that regard.  Lately, I have been trying to coach myself through some of the distressing thoughts when things are malfunctioning.

For example, having chest pains on a regular basis is quite concerning.  I know I am not alone in this because it is such a common post on the Dysautonomia groups I've perused.  So many of the posts complain about going to the ER and being sent home.  The problem is that a cardiac work-up will not show anything.  It's nerves.  It's nerves.  It's our blasted nerves!  I want to holler at them.  Why get all hot and bothered wanting help with something that is not even help-able? But when pain is shooting through my own chest, I want to high-tail it on over to the ER myself.  And, to be honest, I have, on several occasions, outlined and underscored and highlighted my concern with my cardiologist that the wretchedness of Dysautonomia might mask heart disease since that runs in my family.  He sort of nods and smiles each time I launch into my spiel.

When I become overly concerned at my red legs, I try and talk myself off the proverbial ledge by rehearsing the fact that blood pools in my legs the longer I stand, which is why I wear compression stockings ... just not in the shower where the red legs disconcert me.

Well, back to my vessels.  When they are malfunctioning in my skin (beneath my skin??), my skin turns icy.  It is weird.  Really, really, really weird.  Along with being weird, it is rather troublesome.  Even when my skin is not icy, the slightest breath of air passing over my skin sets off the chills.  Wave upon wave upon wave.  A lot like the nausea in its unrelentingness.  

I used to wear hoodies because they were comfortable long-sleeve wear.  Then, I wore hoodies because I have to keep clothing away from my always tender abdomen.  Now, I wear hoodies because often air on the back of my neck sets off the chills.  So, around the house where no one sees me, I wear the hood up more often than not.

I also keep a light weight cotton blanket (I have four back from hospitalizations in the 80s when they sent you home with them) beneath my sheets were I can tuck it all around my body once the chills start.  When they do, I cannot get warm again until all my skin from toes to nose is covered and any and all access to air is cut off from my skin.  Like I said ... weird.  Troublesome.

And wretched.  Especially when waves of nausea compete with waves of chills.

I have four weights of hoodies and oft can feel my icy skin through the lightest weight.  But the rub of all of this is that I am exceedingly sensitive to heat and get hot and bothered (sweaty) just shuffling about the house.  So, sometimes my heat sensitivity is conflicting with my vessel malfunctioning and I can be sweating and having chills at the same time.

Either way, air is not my friend.
Except for breathing.
As long as it is not too cold or smoggy or perfumy.

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