Pain, Lots of Pain

I’m thinking this is gonna be short, cause I’m in a lot of pain right now.  Sometimes my body kind of freaks out.  I get foot cramps, leg crams, screaming Charlie horse that wake me in the night, I am easily confused, I can’t see anything but bright white light in normal levels of daylight, and on really special occasions this sort of situation turns on me all at once.  I have cramps from my feet to my face, I am confused, I can’t remember things, I feel like every nerve and tendon in my body has been pulled tight like a rubber band.  Additionally my spine cramps up and does not move very much at all.  An hour ago I was not able to hold my iPhone and type.  I get something of a semi-paralysis.  It hurts a lot, everywhere.  It is like an extreme all over stiffness that has no reasonable end in sight.  It does not happen very often but I’m not really sure what that even means right now, I’m too busy noticing the pain in my cheeks.  


I have seen neurologists, a few of them.  I had some MRIs, a bunch of blood tests, and the medial professionals have no fucking clue what is wrong with me.  


Dry Stingy ran with the fact that I get migraines.  Yep, so I read a book written by one of the leading migraine doctors in the country and next week I get to meet with said doctor.  I’m looking forward to having to explain that my tailbone shoots painful electric pulses and sometimes I feel them everywhere at once.   I’m having some symptoms that could be explained as a three-year migraine headache — working on three and a half at this point, but who is counting?.


I have high hopes and low expectations.  I have been waiting to see this doctor for over a year.  Everyone is just sort of assuming that the problem is migraine related.  Migraine is one of the least understood diseases.  No one seems to care that I have bone pain, that my lymph nodes swell up that my life is a disaster because of these health problems.  I expect I will get to spend 20 minutes talking to an intern and then three or five minutes with this doctor.  That’s what happened last time I waited forever to see s special doctor who I really expected could help me.  That doctor offered me Topamax, a drug that has a notorious side effect: stupidity.  I took the pills home, did a little research, decided not to ingest them.  I need all the brain cells I have, thanks anyway.  


Most of the time my life is a giant game of avoidance.  I have to spend 80% of my energy on avoiding things that might freak my system out. Sunshine is the hardest.  Saying NO to invitations and good times was easy.  I really can’t go out and play the way I used to.  I have to be super fucking careful.  A night of good time CAN NOT  lead to me sleeping over.  I burst into flames shortly after sunrise.   Often I fuck up a little and really pay the price.  Lately I have been doing alright, I thought.  This moment in paralysis didn’t last as long as some do.     


I have a lot more to say about my health and avoiding the light of day but this is all you get right now.  I have to go back to bed.  I guess I forgot to tell you, this past birthday of mine, I turned 80.  




To watch me tell you a story about this while wearing something sexy click this:

One thought on “Pain, Lots of Pain

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  1. So I’ve seen your video. It’s hard to know what to say. You know, as well as I do, that there’s nothing I can say to make the problems go away or to help you deal with them. I simply don’t know you that well or at all. All I can say, really, is that you are not a waste of a person. You are not someone who deserves this and you are not someone who should be given up on. I’m sorry it’s so difficult and I’m sorry that the doctors so far have found little to help you. My brother struggled with excema for years until something was found to help him, and it’s possible that there’s something for you, too. For however little that helps.

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