Monday, June 19, 2017

The End, and The Beginning


So I left y'all last time as I was saying goodbye to Dr. Moretti and the December team of neurologists at the U of M in Ann Arbor, MI.  My diagnosis was either bulbar palsy, degenerative and terminal; or myasthenia gravis (MG), treatable, but not curable. You can read about the confusion of the November idiots doctors here. http://sickofmg.blogspot.com/2017/06/when-they-told-me-i-might-die.html

I had a follow-up appointment for February, 2001.  When I got to that appointment, everyone was *shocked*.  I mean open-mouthed, calling nurses into the room, getting the head of the neurology department, Dr. Albers, into the room, shocked.  Dr. Albers told me there was no medical reason for me to be alive.  He said I was a true miracle.  Now coming from a "man of science", that was pretty impressive.  But then, God does that... Impresses people.  Usually when you are with a doctor, by the way,  you don't WANT to be impressive... but this time, it was awesome!

Dr. Moretti was thrilled.  Beyond thrilled.  What I didn't realize at the time, and didn't find out until a few years ago, was that my discharge papers read "Bulbar palsy" as the diagnosis upon discharge.  They didn't expect me to LIVE to see February, let alone be there, much improved, from the last time they saw me. 

So even though I did not have ONE positive test at this point, my diagnosis was Myasthenia Gravis.  It was the beginning of a new life, a life with an incurable, neuromuscular disease.  A new normal.  One that would lead to many ups and downs; many more miracles and "no medical reason" situations; and many, many prayers.  It was the prayer of God's faithful people and His grace and mercy that helped me live through my hospitalization.

My husband, through all of this, was amazing.  There is NO way I could have gotten through this without him.  Honey, you are truly my hero.   God blessed this man with everything he could possible need to be my husband.  He was ingenious. When I got home around midnight two days before Christmas in 2000, none of my hospital equipment was there.  I was still on a feeding tube, and it was time for my next "meal."  The pump wasn't there. Doug grabs a fishing pole and sets up a gravity feed for me.  Amazing.

One time, when we were up in Escanaba (think Alaska but in northern Michigan; cold and remote!) visiting his parents, in the middle of winter, my suction machine quit working at about 2 A.M.  I *freaked*.  Doug calmly put on his Carharts (for those of you who don't know what Carharts are, think canvas covered snow pants...nothing gets through them, and every man who lives north of the Mason-Dixon line has some), went out to the truck, got his tool box and came back into the room.  He took apart my suction machine, studied some parts, then asked for the ear wire of an earring.  I was baffled to say the least.

He soldered the earring wire into the circuit board to make a connection where one had been broken.
{pausing for applause to die down}

The man is a ROCK star.

The sad fact is that 3 out of 4 marriages where one partner is chronically ill ends in divorce. That's 75%.  Might be even higher.  Doug stood by me...we had been married all of 6 weeks when I went to the U of M for the first time.  SO many men would have walked.  Not mine.  I'll be eternally grateful.

Next time, the conclusion (I think) to my "diagnosis" story.




1 comment:

Kim Standard said...

This is very interesting to read. Your miracles are so God. Your right he confounds the wise. I am happy to read about your Doug. I am thankful for my hubs too. We are so blessed to have these good men in our lives with chronic illnesses