The decline (aka my whine for the day)

I hate Ehlers-Danlos.  And I am sinking.

We were talking this morning, my family and I, about how this disorder has consumed my life.  Sometimes I wonder, if I never knew I had all of these things wrong, would I be this sick?  Yes, the logical side of me knows better.  I was this sick and that's how I found out I had these things.

I go back to Maryland next month to follow up with the wizard, my neurosurgeon, Dr. Fraser Henderson.  The man performs miracles.  We will look at the results from my last surgery, which I do consider successful.  And we will look at the symptoms that I have now and decide if we'll do the brain surgery.  We have been putting it off.  Some people's chiari or cranial instability are life threatening by the time they get to Dr. H.  Mine was not.  Well, it could be, has potential to be. But, my brainstem was not crushed like some.  Mine has looked a little different on each set of imaging.  So, we've tried other things first to see if it takes some of the pressure off of my cord and brainstem, hoping to avoid the big surgery for a little while. I don't know what else there is to try, though.  Or, if he thinks that I am ready.  I don't want the surgery.  But, I want to go live again.

I'm getting more and more sick, again.  For a while, I think I was feeling better.  Now, I am waking up with headaches and nausea every morning again.  Headaches are lasting through the day.  I'm having horrible pressure inside my head some days, despite being on medications to decrease that.  The pressure is probably high intracranial pressures.  That's what I'm being treated for, anyway.  My vision is getting worse, blurred or doubled more than its not.  The bounding heartbeat, that feeling, is coming back, despite the beta blockers that had controlled it.  I have neuropathy in my hands and feet.  My neck has started popping when I move it and the pop makes me sick through my head.  My reflex in my left pupil is becoming sluggish. And the tinnitus (which is either spinal fluid or a compressed blood vessel) is getting a lot worse in my left ear.  I need a magic pill that fixes all of that.  I do NOT want brain surgery.  I do want to be better and work again.

The not working part, that's killing me.  More than anything else, I'm going crazy because I can't work.  I want to be a nurse.  I want to have a paycheck.  I want to contribute.  I want us to stop sinking financially.

On a good note, I just finished my first year of grad school.  Despite all of this.  I don't know if I'll make it through or not.  But I refuse to stop trying until there is no choice.  I have got to think that I can give my family more, make a better life.