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Churg Strauss Syndrome: The Physical And Mental Toll

Posted Sep 22 2010 12:00am

Hi Everyone and Good Evening.

I’ve been pretty ill for the past two days ( Tuesday & Wednesday ) and yet this past Monday I was feeling just fine until late that evening..welcome to my domestic life of living with Churg Strauss Syndrome.

Since being diagnosed with this disease better than two years ago now, I have been through the ups and downs of CSS…from waking up with my nose and chest totally congested, coughing fits, neuropathy that sometimes stays located to my feet to today where it was climbing above my calves…and I cannot say with any certainity that I have seen it all yet…that would be just a ridiculous statement.

But at this point in time I have taken note of this…there is a definite physical and mental toll that I pay every time that I go through the ups and downs of the disease.

And right now…at this moment I have to wonder if just maybe, this was a churg strauss issue or if it is a issue with me just possibly having the start of the common cold…I know that this sounds kind of ridiculous as I do have a disease that is incurrable and all…but sometimes I have to wonder about the legitamacy of it all.

The mental aspect here for me is…” I was fine all day Monday ” and then late that night I start to not feel right in my stomach ( and I’m still having this issue, even though I have been eating moderately well so far today I think) and Tuesday morning, I start to have that feeling of just an overall unhealthiness invade my entirety.

I head out the door to my job, having it already in my mind now that I have to get through the eight hours it will take to complete my workday just not feeling right…inside my head mentally.

Then comes the physical part of the day…being on my feet for so many hours, having to walk around all day with a motorized mechanical cart to make compounds.

Mentally willing myself to keep my body going when it feels like it just wants to scream and say ” Kill Me Please! ” and that mental aspect carrying over to what I try to do here as I am now physically and mentally drained and just do not have it in me to turn the computer on to write the words that I know I should be placing here on these pages…and then I feel that the disease has conquered me… I have failed in my mission to provide information that is important to my readers.

And then of course there is the issue of having to deal with all of the folks at my job who see me everyday and yet cannot understand what I am really feeling and experiencing throughout my day when I have this issue.

A friend on his forklift asked me yesterday how I was and I told him and he told me I should just go home and of course being the ” money driven ” idiot that I am I told him that I couldn’t and wound up staying the day.

And of course when I got home I paid for that decision in spades.

Now of course I realize that this is more than just ” the Common Cold ” that is causing me these issues…but I always seem to have that nagging feeling somewhere in the back of my brain saying to me..is this really CSS or is this just you using it as an excuse…I mean the doctors who see you keep on telling you that your blood counts and kidney function tests are just excellent, and you seem well.

And yet I’m also aware of the disease, being there just below the surface…waiting for it’s moment to assert itself…and own my life even for a few moments or days….

And while I have to deal with the Mental and Physical aspects of living with Churg Strauss Syndrome everyday… I also realize that I am not alone as I know there are others out there who have to deals with their mental and physical battles with vasculitis as well…I hope that we all are able to win our battles…and maybe even in time…lord willing we can eventually win the war.


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