Tuesday, February 22, 2011

the brain doctor

Today Emma and I trekked down to midtown Sacramento for my neurology follow-up appointment.  My doctor is a popular guy, so babysitter or not, I'm going.  As it stands, we have no real answers, aside from what this is *not*.  He mentioned the words "Stiff Person Syndrome" again, and my heart sunk a little.  It is better than many of the diseases I have been tested for, but having a rare, serious neurological condition is scary.  Even though I tested negative for anti-GAD antibodies, 20% of patients test negative but still meet the rest of the diagnostic criteria.  

Because I had almost no spasms while taking Decadron after oral surgery, the doctor is more convinced that this has some autoimmune component to it.  He sent off a referral for a Rheumatology consult, and I got a call from Rheumatology right after I got home.  Next week I'll make the trip back downtown to see the rheumatologist.  Maybe he will have some insight.  Maybe not.  At this point in my life, I am used to hearing "I just don't know."

Not knowing hurts.  Not being able to move on and live the life I'd love to have hurts.  I want others to understand that this isn't me being lazy, or fat, or whatever else people have labeled me at some point or another.  I don't like the looks I get if I go off the medicine and go out hobbled over.  I don't appreciate the sneers when I use a scooter while we're out in public.  Not being able to have a family full of little ones hurts the most.  

“I asked God for strength that I might achieve. I was made weak that I might learn humbly to obey. I asked for health that I might do greater things. I was given infirmity that I might do better things. I asked for riches that I might be happy. I was given poverty that I might be wise. I asked for power that I might have the praise of men. I was given weakness that I might feel the need of God. I asked for all things that I might enjoy life. I was given life that I might enjoy all things. I got nothing that I asked for, but everything I hoped for. Almost despite myself, my unspoken prayers were answered. I am, among all men, most richly blessed.” - Anonymous

 Curled my hair for my neurology appointment.  Heck, why not?

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