My life with CVS - kinda deep...

Today my illness came in 9th out of the top 10 rarest diseases.  ( here is link to list and article )  I was glad to see it in print, and to see recognition but that still doesn't cover what this illness (Cyclic Vomiting Syndrome or CVS) has done to me and many others in our day to day lives.

Although I don't remember when I first started getting sick my mother told me it started around 1973 when I was 3 years old.  They came up with different diagnosis, but I can (and might still) list all the different diagnosis between then and August 2007 when the Dr. (I was on a morphine pump and can't remember his name), anyhow he sat down at the foot of my bed, smiled widely and said the words that have changed my life... "I know whats wrong with you" and he handed me a bunch of printout about CVS.  Here was my answer!  He had sent a patient to Seattle just weeks prior who had been diagnosed, making him want to study up on such an illness.  Even recalling that day brings me to tears.  I was finally being validated!!  

Unfortunately it didn't make the difference I thought it would.  I was still treated as if I was crazy, or making myself sick on purpose, or my favorite at the ER was I was a drug seeker.  Its been easier and easier within the last 5 years, but that doesn't change the constant fear of how you will be treated next time you are sick.

I look back at my life (I'm 42, I can get nostalgic) and say that this illness has cost me so much personally!!  It has made me slightly agoraphobic bc I am afraid of excitement starting an episode.  I very rarely will go inside of any restaurant to sit down and dine, bc usually I end up "sick".  Many a 1st date have been ruined by, me needing to go home and barf.  I've had friends mildly offended bc every time I went to their house, I left ill.  Explaining that good excitement sets this off isn't quite comforting.  There was many months that I would get so excited to see Lily that every time she came, I got sick.  Not a fun visit for anyone!!   Employment and relationships have been lost repeatedly....

So now here I sit feeling alone and defeated by this illness.  I haven't worked in almost 1 1/2 years.  I have NO income coming in, no nibbles for work, but with my age and attendance issues I'm not a great candidate in any company.  Tomorrow I am making the call to SSI to get this ball rolling.  I see no other options... this illness is winning....