Autoimmune disease


I was diagnosed with something idiopathic.  Which, to me, means that my body is a big ole idiot.  Too stupid to continue working properly.  That the medical field is too stupid to fix me.  That the general public is too stupid to understand that diseases exist that they can’t see, and cause pain they can’t fathom.  Idiots.  Idiopathic.

Idiopathic disease has made me bitter.  Mean maybe.  Mostly inside my own mind.  My heart still feels soft and weak.  But when I sit to write about it I feel hateful.  I prefer to think that this is normal, possibly even healthy.

I no longer have friends.  In the early days of this idiot disease, I had a social life.  I did some things, went some places, had some experiences.  As the idiot progressed, I was able to do less and less without requiring more and more rest and recuperation.  A single mom of two boys in nursing school…fun isn’t always a necessity, especially when it causes days of swelling, pain, bruising, and exhaustion.  Healthy friends would ask if I could go biking or hiking or camping and the answer became a constant no.  Mostly because I knew it would take away from days I was able to work effectively, or parent, or sometimes just be alive.  They began less and less to seem understanding and simply stopped asking.  Thus, I no longer have friends.  If I say this out loud I get the sweet, sad-faced pout from whomever I am speaking with and they say “I am your friend”, making me remind them I have never talked to them on the phone or spent time with them outside of work.  I wouldn’t want to be my friend either…the topic of my idiot comes up daily….because it is the largest part of my life.

I was able to marry.  But the idiot comes between us.  I am always tired.  I sleep at least 16 to 17 hours a day when I am not working my 12 hour shifts.  Sex is not what it was, as the idiot causes infections for no good reason, no matter the day.  Feel like a bladder infection?  No?  Too bad.  The idiot does.  Want some yeast?  No?  The idiot does.  Want a partially normal life with a kind-of normal wife?  Yes?  Well, the idiot likes her just the way she is.

I am angry with the idiot and the doctors.  I don’t like people who give advice, because they don’t live with my idiot.

I stopped taking opiates after years of use, because my pain is always there.  Guess what?  It’s still there.  So now, I’m getting off of the muscle relaxant.   I have not spoken with the docs about this.  I don’t think their opinion matters anymore.

I am considering stopping the Rituxan and the Imuran that have been doing not much to keep the idiot at bay.  I am scared.  I am angry.  Mostly I am tired of being an idiot.