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.

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.

Thursday, June 8, 2017

When They Told Me I Might Die

So here I am, back at the U of M, finally in a room at like 2 in the morning.  My saving grace was that it was December, so I had new doctors once again.  And this time, they were GOOD.  I will never forget Dr. Paola Moretti.  He is the second doctor I credit with saving my life.  He looked me right in the eye and said, "We WILL figure out what's wrong with you."  And I totally believed him.  And he kept his word.

On December 9, 2000, my team of doctors walked into the room looking quite somber. I knew that at this point, none of the tests, bloodwork, LP's, EMG's, etc had come back positive. One negative after another.  Dr. Moretti said, "We have narrowed your condition down to 2 things:  one of them is Myasthenia Gravis, which is treatable, but there is no cure.  The other is a form of bulbar palsy that is degenerative and terminal."   

I just blinked.  I was 29 years old.  I had been married for about 14 weeks.  And I was just told I may be dying from a horrible, degenerative, debilitating disease.  I couldn't speak. And those who know me know I'm *never* at a loss for words. I couldn't even pray.  

And that's what scared me the most.  

Then the Lord led me to Romans 8:26-27. 

"Likewise the Spirit helps us in our weakness. For we do not know what to pray for as we ought, but the Spirit himself intercedes for us with groanings too deep for words.  And he who searches hearts knows what is the mind of the Spirit, because the Spirit intercedes for the saints according to the will of God." Romans 8:26-27 ESV

What a comfort!  I had been a Christian my whole life, but never before did I lack words to pray... Until now.  When I read this passage, when I understood that the very Holy Spirit of GOD, who lived in me, went before the throne of God on MY behalf; "with groanings too deep for words":  don't get me wrong, I was still very troubled... But I had a sense of peace that I didn't have before, because I knew somehow, God was going to take care of me.

Dr. Moretti said the best thing to do was to continue treating me as if I had Myasthenia Gravis (MG) because out of the two things I most likely had, it was the only one that was treatable. So if I responded to treatment, I had MG.  If I didn't I'd likely be dead in months.  Only time would tell.
To be continued...

For part one of my story click here:

Part two:


Monday, June 5, 2017

Can Anyone Tell Me What's Wrong?

We last saw our heroine as she was intubated and flown via helicopter to the U of M, half dead.  If you missed that post, you can check it out here:

Now, the best thing about the University of Michigan hospital is that they are a teaching hospital.  That means you get the opinions and minds of MANY doctors and medical students pitching in on your case.

The WORST thing about the U of M hospital is that they are a teaching hospital.  That means they switch doctors every calendar month.  When I first got to the hospital, I had *rock star* doctors (or so I'm told... I was heavily sedated for my own safety, and probably the safety of the medical staff around me!). I received 2 rounds of plasmapheresis, so a total of 10 treatments in October.

November hit, and I got new docs.  And they sucked.  They were lazy, narrow-minded, uneducated people who didn't give a rat's ass about their patients, and gave even less thought to solving the patient's problem.  Dr. Andrea Bozoki and Dr. Ming Hong...These are two names you should remember if you ever need a neurologist.  Run far away.  Why? Because they almost killed me.

They stopped doing the pheresis treatments which were definitely helping me and giving me strength back.  They decided I didn't really need it.  They came up with this crackpot diagnosis of "chronic axonal motor neuropathy."  So let's break that down....

Chronic:  Always
Axonal:  adjective form of axon, meaning nerve fiber
Motor: movement
Neuropathy: refers to general diseases or malfunctions of the nerves.

So their diagnoses was something like I always had nerve fibers that malfunctioned when I moved.


Dr. Bozoki told my family if I lost 50 pounds I would be fine.  FINE. Not fine!
Dr. Hong told me (while I'm in the hospital, on a vent, trached to get rid of my double MRSA pneumonia) that if I would just accept the fact that all of this was in my head I would get better.

I looked at him, grabbed my notepad and wrote, "You mean I'm CRAZY?"  And he just kind of closed his eyes and nodded his head.   Yes, these were the doctors in charge of my health, my very LIFE...and they thought I was an overweight nutjob.  Instills lots of confidence...

I was discharged just before Thanksgiving with pain pills and quite a high dose of anxiety medication.  Nine days later, (praise God it was December and I'd hopefully not get any WORSE docs than I had in November) I was driven back to the U of M ER when the pills I was trying to swallow were coming back out of my trach.  By the time I got to the hospital, I had almost no muscle control.  By the time I got to a room, at 2 A.M. (after sitting in the ER for 10 hours), my entire face was paralyzed.  I couldn't close my mouth all the way, and I couldn't open it.  I couldn't open one eye and I couldn't close the other.  I couldn't hold my head up.

And I was terrified.  

To be continued....

Saturday, June 3, 2017

Ah, June!

When most people think of the month of June, they think of summer picnics, weddings, days at the beach, yummy summer produce and more.

When I think of June, I think of Myasthenia Gravis Awareness.  Because I have Myasthenia Gravis (MG), a neuromuscular disease that has occupied more of my life in the last 20 years than anything or anyone else.

Before I was diagnosed, I went to many doctors.  I heard it all:  I was just lazy, I was fat and needed to lose weight and all my problems would go away, all of my symptoms were in my head, I had an anxiety disorder, I just wanted sympathy.  You name it, I heard it.  It was devastating.  Knowing there is something seriously wrong with you and no one listening is the most terrifying thing I have ever experienced.

Finally, I *begged* another doctor in the practice I was patronizing to see me. (It was their policy to not switch patients from one doctor to another, even when one doctor is willing to let you die!)  This new doctor saved. my. life.  He took one look at me and said, "You are very, very sick." I think I cried with relief.

He ordered every blood test known to man, and the trips to the "ologists" began.  Pulmonologist, including sleep study; cardiologist, including echocardiogram; neurologist, including lumbar punctures, CT's, MRI, MORE bloodwork; psychologist (actually psychiatrist, but that's not technically an "ologist"... going for continuity here, people!) etc.  The first neurologist I saw told me I had a tumor on my spine without doing any concrete diagnostic tests.  Needless to say I never saw him again.

On October 13, 2000, 5 *years* after my first symptom, I had an MRI under sedation.  I quit breathing, turned cyanotic (blue from lack of oxygen) and they had to call a code and bag me through the rest of the procedure.  So much for symptoms being psychological; even the *best* actors or nut jobs couldn't fake not breathing when unconscious.

Four days later I was flown via helicopter to the University of Michigan, intubated, and dying.

To be continued....

WAIT..... What?!?!?

photo courtesy of losarciniegas Have you ever thought of how strange it is that you can have a conversation without really saying anyth...