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Life with Chronic Illness

I have been quite busy lately founding the Mollaret’s Meningitis Association (www.mollarets.org).  Our mission is to support those affected by Mollaret’s Meningitis and help fund research to find a cure.  Our vision is a world free from Mollaret’s Meningitis.  I have a great group of fellow survivors on the board and we are really starting to make a difference.  It is really challenging trying to work on all of it during all of my daily symptoms, but I am making it happen because it is helping so many people.  This is life with chronic illness.

The above video gives a great description into what it is like to live with a chronic illness.  She specifically refers to conversion disorder (an alternate name for FND) and ME.  Here is my exchange with her on Twitter thanking her for sharing what we have trouble expressing most of the time.

This picture is an example of what most of my days look like.  I faint and become paralyzed.  My kids come to my side to make sure I am okay, getting me pillows and blankets.  My 2 and 4-year-old kids shouldn’t have to know what to do to help daddy when he faints, but they do.  This is life with a chronic illness.

 

Disability Struggles

I am also trying to put together my appeal for my long-term disability insurance claim.  It is so frustrating trying to work on this.  It takes so much time, and is so unnecessary.  Their doctors lied in their report to the insurance company, but the state department of insurance doesn’t care, and there is nothing you can do but file an ERISA complaint once you have exhausted all your appeals.  Every day I faint and become paralyzed, and that is just one symptom, but they say I should still be able to work.  It is so wrong to treat people this way and the ERISA law needs to be replaced with something that makes it more fair for disabled people.

And because of a new law passed in Idaho, I probably won’t even be able to file my complaint.  The law states, essentially, that whoever loses their suit has to pay all attorney fees for both sides.  The juries in Idaho already heavily favor the insurance companies, so if we were to try to file the complaint we would probably lose.  We can’t afford our own attorney fees, much less those from a large insurance company.  Idaho needs to fix this law so we at least have a fighting chance at getting the money we are owed.

Living with a chronic illness is very difficult and hope you give people the benefit of the doubt if they don’t look disabled.

Life’s Hard; Be Kind

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