What is hope...

"You will never be completely free of pain."  What comfort I those words to be!  So often, of late, I hear folk tell me that they do not know what to say.  Here, I have written many a time that all they have to do is speak the sweet, sweet Gospel.  Read me a psalm or two or twelve.  That is, of course, a salutary idea.  Only, now I would like to add another option:  "That's crappy."  or any derivation thereof would me music to my ears, my heart, my soul.  Because what is happening to my body is crappy...and all derivations thereof.

At the doctor today--a final visit since insurance is ending--I was very specific with the words I used.  I told her that I had a plan for the wretched migraines.  I had a plan, of sorts, for the freezing cold spells.  But I did not have a plan for my innards...other than trying to survive the agony without falling into lasting despair.

After hours and days and weeks of online reading, I have become quite educated on what exactly happens when dysautonomia interrupts your digestive processes.  The two things most troublesome for me are gastroparesis and small bowel bacterial overgrowth (SBBO).  The former is about food not emptying from my stomach in a timely manner; the latter is about the same.  These explain the writhing, bloating, foam, gas, difficulty breathing, and diarrhea.  In a word, the problem I have is motility.  But because this is a neurological problem, not a digestive system one, motility medications most often just make things worse.  For me, much, much, much worse.

I had given up a while ago.  I had given up any hope on this part getting better.  There seems to be no rhyme or reason with what I eat, when I eat, how I eat.  Of course, I absolutely need to stick to the small meals--something I had gotten away from with all the tasty cooking the seminary bride staying in the basement living space was setting before me.  But even small meals do not always help.  They, too, can add up and get stuck in bits where they should be moving along.

I read, however, that a common treatment for SBBO with dysautonomia patients was a 7-day course of erythomycin when things are really bad.  It knocks back the build up of bacteria that happens when food hangs around too long in the small intestine.  This is why the two times I have had antibiotics in the past year I have had better digestion times...less nights of writhing for hours on the bathroom floor.

"You will never be completely free of pain," my doctor said when I talked about needing help with a better plan.  "But we can keep trying to have less pain, to bring your pain to a more manageable level.  Perhaps where you can sleep even though you are aware of it."

Much to my surprise, my doctor, who holds a stance of antibiotics as a last resort, is quite open to using the most common motility drug treatment in this specific sort of SBBO, only she is not all that supportive of the zap-it-once in a while theory.  She believe motility treatment is better in small doses of erythromycin daily in suspension.  So, I will start that medication, worried about the additional money every month, but hopeful that things could be better.

Even a little bit.
Even if just for a while.

I do not hope for a miracle.  I do hope for more grace in the suffering.  And I hope for less suffering.  If not whole nights without out, long, lovely stretches of that, perhaps whole nights where I am only aware of the pain and not drowning in the despair it brings.


I am Yours, Lord.  Save me!