Wednesday, July 2, 2014

Auto Immune Disease: What the Afflicted Face

Yesterday a devotion of mine was published online by Christian Devotions.com  Here is the link to my piece:
http://christiandevotions.us/?wpmlmethod=newsletter&id=870&mailinglist_id=0&subscriber_id=2252&authkey=e0ec453e28e061cc58ac43f91dc2f3f0  If you click on the link in the bio on that piece you will be taken to some other past devotions I've written for this ministry.

My book is still in hinterland. Do I borrow money to self-publish it?  Do I publish for free only as a Kindle book? Or do I take on the hot summer pavement and seek a traditional publisher? I am inclined toward the first two options...I need to do something involving the least amount of work possible.  My energy is nil. I want to get the book out there.  I know it is good and it deserves publication.  But I just don't have the strength or mental duress to do what needs to be done to make good on a book to pay back the outlay used by a publishing house to print and circulate my book.

These four (or six) diseases that I have and their offshoots are really making mud of me. It takes me half the day to take a shower (on the days when I actually DO shower).(Thanks to SZ and RA);  Fatigue (RA, Sj, PsA) Pain makes it so that I can no longer stand long enough to do a small batch of dishes. Pain makes it impossible to walk more than 50feet without excruciating pain; open a bottle; cook a meal;lay on my bed or sit in my recliner.(RA Sj PsA) Reading a book now has its own challenges( glaucoma, Sj, RA)
My brain takes unannounced, protracted vacations....sometimes checking out even mid[-sentence. People look at me in confusion,...raising one eyebrow to the others in our conversation and I stop talking.  I've finally learned that that brow placement means, "Shut up..no one understands what you are talking about." (Schizophrenia, Bipolar and all the Auto-immune diseases as well.

I could go on and on...but you get the drift.  I've barely scratched the surface of symptoms and side effects of the diseases I have.
I am so so tired of hurting.
So so tired of yet a new symptom
so tire of explaining to people what exactly is wrong with you??
I'm so tired.  I'm so tired of fatigue that I no longer care that I'm useless.
I'm tired of not knowing what day it is.(thanks be to God for the little date and time marker in the lower right corner of my computer...but turn my head and I know longer remember the date.

I'm tired at being at a church function and not having a word to say....I cannot keep up with the conversation or the jokes. No one says "Here come sit with us"

Having Sj suddenly makes eating dangerous. I must have copious amounts of water or else the food will turn to dry paste in my mouth and I can't get it up or down.  I try to expel it daintily...but hacking up a dough ball of chicken is not a pretty sight no matter how you approach it. When eating, it is a guarantee that I will choke at least once.

Just more of the joys of AID (Auto-Immune Diseases.) If you are one of the "blessed" who have this kind of illness you will relate right away. If not, you're probably scratching your head. I'm sorry if this post was graphic and disgusting.  Believe me :it gets worse...I edited it.What is so profoundly difficult to bear is trying to explain how a body can host four or more diseases...all different yet all having similar symptoms and treatments. For me, it is hard to understand is why the concept is so difficult for people to face.Even though they've assigned our diseases their own cute little ribbons...it does little to make people comprehend.

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