The phone rang. Oh why did I answer?

I can’t remember how many days after  my appointment at Johns Hopkins it was when I got the phone call, or where I was, but I do remember the jist of the call.  I had MS.  The neurologist was very kind and went over everything. And then he reexplained everything.

Was he positive I had MS?

Apparently there are three classifications when attempting to diagnose someone with MS: possible, probable, and definite.  Wasn’t there a chance I was in the possible or probable categories?  The neurologist was calm and reassuring, but the answer was  definite.

OK, OK, I have MS.  Now what kind do I have?  There are 4 different subtypes: Relapsing Remitting, Secondary Progressive, Progressive Relapsing, and Primary Progressive.  This is where the “good” news came, if you could call any of it good.  I had the relapsing remitting type, which means that I would have relapses/episodes, but should recover fully after each event.  The other piece of good news was that since all of my symptoms so far had been sensory, it was possible that I could continue that way for the rest of my life.

So as I was processing the fact the I definitely had relapsing/remitting MS, a lot of other questions started popping up into my head.  What was the treatment?  Could I have kids?  Would I pass it on to the kids?  Were there things I couldn’t do or eat?  The neurologist very patiently answered all of my questions.

For treatment, there was a choice of 3 types of injectables, 2 daily ones and one that was weekly. I chose the weekly one, Avonex, because it was only once a week and I thought it fit into my lifestyle better.  I didn’t want to be taking shots at work.  However this still  meant that I would have to give myself a shot.  Do you happen to remember the whole wimp thing from a few posts back?  I was not very happy.

He also said that I could have kids, and there was no chance of me passing the MS on to them as far as they knew.  The only physical limitations involved were the ones that my body dictated on any given day.   No change in diet was suggested.  Throughout the discussion, he kept reminding me that MS is an unpredictable disease, and anything could change at any time.   After we got off the phone, I just sat there in a fog for quite awhile.  What to do now?

I called a few friends, and swore them to secrecy.  I was embarrassed, without any basis for the feeling, other than the fact that I have a difficult time allowing anyone to know of any weaknesses I might have.

Then I went to the bookstore.  I can be quite the reader when I have time.  I came home with about five books, and I don’t think I’ve read more than a few pages of any of them.  They scared me.  Most of them are full of the worst case scenarios, and to me at that time any type of disability would have been considered a worse case scenario.  I was a paramedic that worked on a unit in the streets.  I needed my body at full functionality.  I loved being a paramedic and I couldn’t picture myself doing anything else.  I’d been a paramedic since I was 20 years old and I was an EMT for a few years before that.  It was all I knew.  Being a paramedic was who I was.  I went from reading, to isolating myself and crying again. Self pity took over.  Who would want to date or marry me now?  How could I ask anyone to take on such a responsibility?

Eventually, my solution was to ignore the fact that I had MS, except for the weekly intramuscular shots I had to give myself.  However, before I could totally enter into my own little protective bubble, there was one thing I had to do.


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