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.




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: http://sickofmg.blogspot.com/2017/06/ah-june.html

Part two:  http://sickofmg.blogspot.com/2017/06/can-anyone-tell-me-whats-wrong.html

 

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: http://sickofmg.blogspot.com/2017/06/ah-june.html

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.

{{crickets}}

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....

Wednesday, April 12, 2017

Letter To God: About A Son



Abba Father, 

I have a son.  I don’t know how you did it!  I don’t think I could.  I think of Abraham, who so obediently put Isaac on the altar, Father.  I know You knew he wouldn’t have to do it, and I have to believe Abraham had crazy faith that You would provide an alternative.

But Father, I don’t think I could have done it!  My son!  My only son?  I’ve always known You loved me.  But I didn’t have one iota of just how much until I became a parent.  That love…that love a mother has for her child.  It’s amazing, Lord God. It’s above and beyond anything I’ve ever known.  That sweet, precious love of a child.

But you knew that Love too.  You know that Love.  And yet…. You allowed Him to be given up.  You let Your One and Only leave the perfectly perfect setting of Heaven, and go down to the world You created together.  To live.  And to die.  Fully human.   
And yet, always, fully God.  Born to a virgin.  Crucified.

Dead.

And buried.

Oh, God!  How could You have withheld your Arm of Might against those who shouted, “Crucify Him!”  How did You not smite them all with one flick of your finger? 

And yet…. I already know the answer to the question.  Because of Your intense, perfect Love.  For me.  For all who believe…for all who do not. You did it for all of us. Father, that You gave up Your precious Son, to be mocked, and beaten, and maimed to within an inch of His very life; Oh the Love! 

Once and forever, The Son of God hung on a tree for all men, for all time.  Every sin, past, present and future was paid for by the Precious Blood of the Lamb.  Oh, thank you Jesus. 

I think, “How could anyone have been screaming and yelling for the death of an innocent man?”  And yet…How could I know?  How can I ever know what I would have said on that very day?  I cannot!  Therefore, I cannot assume I would not become like Simon Peter.  He may not have yelled “Crucify Him!” but he denied You…three 
times in one night.   

Is there really a difference? 

I praise you, Father, that that is not the end of the story.  Three days of total separation went by.  I cannot imagine Your grief.  You and Your Perfect Child had been together since…well, since before forever began.  You are literally part of the same Being!  And then, for three days…nothing.  It must have felt like eternity.

That third day.  Oh, Glory!  Your Son, robed in Power, broke the very hold of death itself to Rise Again!  Hallelujah!  The angels sang!  The heavens rejoiced!  And people like me, people everywhere, were given new life. 

Father, there is nothing adequate I can give You for giving up Your Child.  I could die for my son.  I could probably even kill for his life…But could I give it up?  Father, let me never have to make that decision.

I praise You and thank you and offer You the only thing I have to give…myself.  My life.  In the shadow of the cross, troubles grow small.  Worries fade.  Burdens lighten.

And my soul sings:

“So I’ll cherish the old rugged cross;
Till my trophies at last I lay down;
I will cling to the old rugged cross,
And exchange it someday for a crown.

In that old rugged cross, stained with blood so divine,
A wondrous beauty I see,
For ‘twas on that old cross Jesus suffered and died,
To pardon and sanctify me.

So I’ll cherish the old rugged cross,
Till my trophies at last I lay down;
I will cling to the old rugged cross,
And exchange it someday for a crown.


To the old rugged cross I will ever be true;
Its shame and reproach gladly bear;
Then He’ll call me some day to my home far away,
Where His glory forever I’ll share.

So I’ll cherish the old rugged cross,
Till my trophies at last I lay down;
I will cling to the old rugged cross,
And exchange it someday for a crown.”

I praise you Father.

In Loving Adoration,
Your Daughter

Sunday, February 19, 2017

Expiration Dates


When I got married, I moved into Doug's house.  He was already established, and I had been living back at my parent's house to save money.  Doug was (and is!) an amazing chef. He is just good.  Self-taught and everything. Well, one day while he was at work I started going through the small pantry that he had in the kitchen.  It held things like canned goods, cake mixes, some spices, things like that.

I have been a germaphobe and a rule follower my whole life. Well, almost {ahem}.  So you can imagine my shock and horror when I found a cake mix that was expired by almost a year.  It went in the garbage.  Then I went on to find some rice that was over 2 years expired. I wish you could have seen the expression on my face. I continued to search through the pantry, and found some things that were expired for over 10 years.  Ten years, people.  I haven't had anything for ten years except people.

Suffice it to say, Doug had nearly empty cupboards by the time he came home. Let's just say we never did agree much on when something is actually "expired" or when its time is up. (Still don't!)

I was blessed with a Women of Faith DVD from a good friend for Christmas.  I was watching Christine Caine, whom I had not seen teach before.  She's very funny, but she speaks truth.  Anyway, she started off with a short clip about a kid looking for expired items in his parent's refrigerator.

Her point, as she talked about Abraham and Sarah in the Bible, is that God's promises have NO expiration date.  They never go bad, or run out of time.  Abraham was 76 when he was told by God that He would become the father of many nations.  (And his name was Abram, but for the sake of clarity we'll just stick with Abraham; Sarah has the same situation.) Seventy-six years old.  Not exactly the time you think about starting a family.

God said to Abraham, in Genesis 15:5-6:
"Then He [God] brought him outside and said, 'Look now toward heaven, and count the stars if you are able to number them.' And He said to him, 'So shall your descendants be.'
And he [Abraham] believed in the Lord, and He accounted it to him for righteousness."

Abraham believed God. He believed Him.  But then, many years later when God flat out told Abraham that Sarah was going to bear him a son, he "fell on his face and laughed." (Genesis 17:17)

When God specifically told Abraham that he would have a son by Sarah in one year, Abraham was 99, and Sarah in her 80's. 

"Now Abraham and Sarah were old, well advanced in age; and Sarah had passed the age of childbearing. Therefore Sarah laughed within herself, saying, 'After I have grown old, shall I have pleasure, my lord being old also?' "  Genesis 18:11-12 (emphasis mine)

Sarah had "passed the age" of being biologically capable of conceiving a child. That time had expired. Time was up; It had run out.

Well, if you know your Bible, you know that God worked a miracle to fulfill His promise to Abraham.  And I LOVE that!  It was physiologically impossible to Sarah to conceive a child, and that's when God. Showed. Up.

God's promises have NO expiration date!  How often we limit God with our disbelief!  Or rather, how much blessing we miss out on due to our unbelief. 

Dear friends.  Do we believe God?  Maybe at first, when things are still looking optimistic.  But the moment we decide that the time for God's promise has gone, that it has expired, what about then?  Do we believe then? Or do we laugh? 

Let me assure you, my friends.  
"With God nothing will be impossible.” Luke 1:37
 
Can I get an Amen?  Or how about a Hallelujah?
 
There is nothing God cannot do.
 
There is no sorrow He cannot turn to joy.
 
There is no suffering He cannot stop.
 
There is no disease that God cannot heal.
 
There is no financial problem that God cannot solve.
 
There is no loss that God cannot restore.
 
There is nothing that God cannot do.  
 
And He has all the time in the world to do it.  
 
Will you continue to believe Him? 
















Friday, February 17, 2017

Are You a Water-Walker?





“Shortly before dawn Jesus went out to them, walking on the lake. 26 When the disciples saw him walking on the lake, they were terrified. “It’s a ghost,” they said, and cried out in fear….”

When I see Jesus doing something miraculous, do I accept it for what it is?  Or do I make earthly excuses?

27 But Jesus immediately said to them: “Take courage! It is I. Don’t be afraid.”
Jesus immediately tells them not to be afraid.  Is that what I hear?
28 “Lord, if it’s you,” Peter replied, “tell me to come to you on the water.”
29 “Come,” he said.
Then Peter got down out of the boat, walked on the water and came toward Jesus. 30 But when he saw the wind, he was afraid and, beginning to sink, cried out, “Lord, save me!”

What is my “wind?”  What is yours?  Do you doubt God’s faithfulness to you?  Do you doubt God will do what He says in His word He will do?  Do you wonder if God really is who He says He is?

I say, “I’ve got bills to pay!”
“Take courage,” says Jesus.

I say, “I’m tired of being ill, and I’m scared of suffering!”
“Don’t be afraid,” says Jesus.

I say, “But I’m so alone…”
“It is I,” He says.

31 Immediately Jesus reached out his hand and caught him. “You of little faith,” he said, “why did you doubt?”

Why DO I doubt, Lord?  I have seen so many miracles in my own life, let alone in the lives of others.  I know you will never leave me or forsake me!  I know Your promises are true…and yet…

Forgive me Lord.

32 And when they climbed into the boat, the wind died down. 33 Then those who were in the boat worshiped him, saying, “Truly you are the Son of God.” Matthew 14:25-32.

When Peter saw Jesus walking on the water, he first thought He was a ghost.  Peter told Jesus to tell him to come out on the water, if it was indeed Him.  So Jesus said, “Come.”

And to Peter’s credit, he got out.  I’m not sure I would have done that much! But out he goes.  And when he’s looking at his Savior, he walks. on. water.  He WALKS on water! We’re talking wind-tossed, wavy, unfrozen water.  And Peter’s walking ON it.   

That is, until he looks at his surroundings.

When we encounter difficulty, do we immediately start to sink?  Or do we fix our eyes on Jesus, the author and perfecter of our faith?

I challenge you to remember the One Who Walked on Water.  He can give us that amazing ability to be a water-walker too!  But we have to stay focused on Him. 
Circumstances mean NOTHING to Jesus.  He is beyond time.  His power knows no limits.  Our situation is not too difficult for the Resurrected Son. He is bound by nothing. 

Except our disbelief.