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.

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

 

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....

My MG Pregnancy Story Part Two

(reposted)

Okay....so we left off at the fertility clinic, in the room, getting the ultrasound, searching for the number of eggs able to be retrieved for in vitro. To give you a hint, my friend had this done and she produced at least 30 each time.

And they found.........one. One. Uno. Eins. Een. Jeden. Un.

Yah. I was devastated. And I was alone. I left in a state of shock. We were just SO sure this was going to work. I didn't respond to the fertility drugs. Apparently I couldn't have a baby. I went home and took the few baby things I had gotten (an adorable giraffe that said the "Now I Lay Me" prayer, and a little baby toy someone had given us when we told them what we were doing). I gave them to Doug and told him to burn them. (He didn't, but he got them out of my sight).

It was almost a year of getting over the disappointment, trying to figure out what was next....I really didn't know how important it was to Doug to have his own biological child. To me, any child would be mine if I raised it and loved it. I never had a strong desire to HAVE children...I just wanted them. Lots of them. Having this infernal disease was going to make that very difficult.

In May of 2005, after seeking God and lots of prayers on my part, on my friends' parts, my family, etc., I very clearly heard God tell me to "submit to my husband" in the area of the baby. I was like a child dragging their feet..."Fine," I thought.

I told Doug we could try "the old fashioned way" but I would only try for one year, and then we would adopt. I had it so stuck in my mind that I couldn't get pregnant...but there I go again, playing God when I should know better!

We had to start with my neurologist, who gave us the okay after four months of being off my CellCept. I had to go off my anti-depressants (which I very soon had to go on a pregnancy safe one because I was losing my mind). I had to go on a blood pressure medication, start seeing a perinatologist (high risk OB people), and had to go on insulin. The insulin made me gain 20 pounds before I we even started trying, so I was not very happy.

Speaking of high risk, I had all these factors: obviously the MG, I was diabetic, I was 35....three BIG factors in a high risk pregnancy.

Both of my sisters gained like 100 pounds with their pregnancies, and I'm thinking, "I can't even move (I really went downhill off the CellCept)...I'm going to gain 150 pounds." I was nervous, to say the least.

We started trying in October of 2005. I took a test in October, which I shouldn't have, because it was negative, and I was really surprised at how disappointed I was. I still didn't really WANT to be pregnant. I was terrified! And my family thought I was crazy...they were very concerned about my health. In November I got my period before I even thought about testing, so I knew then that I wasn't pregnant.

On December 10, we had a Michigan MG meeting in Dundee, Michigan. Well, in Dundee there is a Cabela's. I love Cabela's. What I didn't know what that it was like Cabela Club Member Day and there were about 420,000 peeople in the store. We didn't even want to walk around, and the lines were to the back of the store. It's a BIIIIIG store... We only needed a few things, so I got in line right away, and Doug went to get the stuff. It didn't help that I was having THE worst case of PMS EVER, and I was ready to kill everyone I looked at. I hate crowds ordinarily, but this was a special kind of hatred. I was supposed to get my period that day, so I was just waiting. I KNEW I couldn't be pregnant because of the PMS from hell.

Well. We got home about 9:30PM, and still no period. I was going to test in the morning, Sunday. I couldn't wait. I just wanted to get it overwith so I didn't wonder all night long. I would cry a little, then go to bed. So I got the test out, peed, and put the stick on the counter.

To my shock, amazement, and utter glee (which I wasn't expecting) a big ol' PLUS sign showed up. I just sat there for a minute. I was actually speechless. For those of you who know me well, that NEVER happens. I brought the stick into the living room where Doug was watching TV. I gave him the stick, and he just looked at it.

He said, "What does this mean?"

And with great delight I replied, "What do you think it means.....Daddy???"

To be continued.....

Myasthenia Gravis Awareness...PLEASE SHARE

I am reposting this from June 3, 2009 with a few changes.

I have been dealing with this disease called MG for about 17 years now. I was not "officially" diagnosed until July of 2003, when a new test for a specific kind of MG (Musk+ MG or MMG) came out. I started having symptoms about 6 months after having chronically infected tonsils removed (December of 1995).

I was hospitalized in October of 2000, where I spent the majority of the next 3 months at the U of M neurological intensive care unit (NICU). Prior to being hospitalized, I had been to dozens of doctors. Most of them told me it was stress, a few told me it was anxiety. One told me it was all in my head.

On October 13, 2000, I had an MRI under sedation. I quit breathing completely, and had to be emergently intubated and resuscitated. Four days later, after numerous tests, EMG's spinal taps, etc., I was flown via helicopter to the university of Michigan hospital in Ann Arbor. I was told later that the doctors were afraid I would not have survived the trip by ambulance. I don't remember much from then until November 1, 2000. 

I CLEARLY remember two doctors I had during the month of November, Dr. Andrea Bozoki and Dr. Ming Hong, who told me all of this was in my head, and if I accepted it, I would get better. If you ever run into either of these doctors, turn and run for your life. Literally. They came up with some corny diagnosis of chronic motor axonal neuropathy, which translates to "fancy name for pain because you're a psycho." They sent me home with anxiety medication and pain pills, and I almost died. It is truly a miracle I am here at all today.

Many things happened to me that should have killed me. First, the carbon dioxide levels in my blood were at levels that should have required a ventilator, yet I was still working full time. By the time they realized this and put my on oxygen 24/7, I literally got high from the initial oxygen because my brain was so starved for it. It is unfathomable, except by the grace of God, that I did not have brain damage (no comments from the peanut gallery, please!) : )Then, while in the hospital, the first 10 days were touch and go. They were not sure I would survive. I contracted staph pneumonia (MRSA), and had to be intubated and removed from the ventilator if I was to survive. It was a long, uphill battle.

I became diabetic from the huge doses of steroids there were giving me to save my life, and was in a wheelchair when I left the hospital. I walked with a walker after that. I also came home on a feeding tube, because I was not strong enough to swallow yet.

The kind of MG that I have, MuSK+, effects about 7 people out of a million. (Okay so I'm not one in a million...) Some of the symptoms are:
*Double vision
*Drooping or even closing of the eyelids from weakness
*Swallowing difficulties, frequent choking
*Weakness of the intercostal and diaphragmatic muscles, which means lying on the back is nearly impossible (if you want to breathe, anyway)
*Hoarseness and changes in voice
*Weakness or paralysis that worsens as the day progresses
*Facial paralysis (all of the muscles in my face were so slack everyone at work kept asking me why I was so angry...I just couldn't smile because none of the muscles worked anymore)*Temporarily absent breathing
*Sustained difficulty breathing
*Drooping head (as neck muscles are too weak to hold it up)
*Poor posture
*Difficulty climbing stairs
*Difficulty lifting objects
*Difficulty talking (slurring words, inability to enunciate clearly)
*Difficulty producing the right words when needed
*Difficulty chewing
*Fatigue
*Overall, generalized weakness
*Weak muscle tone
*Muscle pain (due to atrophy from not using muscles enough)
*Frequent clumsiness and poor balance
*Frequent dropping of items due to weak grip

I can honestly say I have or have had all of the symptoms. It is not fun. A crisis situation (like when I was hospitalized) can occur at any time. A person with MG may be fine when they get up in the morning, and collapse for "no" reason in the afternoon. I have actually fallen off the toilet because my leg muscles just gave out. You don't really think that you're using a lot of muscles by simply sitting on the toilet, but you'd be surprised! (You can laugh, it's funny NOW!)

Before I was hospitalized, my right hand had atrophied so much it was curled up into my body, and I looked like a stroke victim. I had to prop my head up with my elbow on the table because I couldn't hold my head up.

Fast forward: Glory to God, I now have a brilliant, fascinating, perfectly healthy son, Jacob, who will be 7 in August. Having him was the most difficult thing I've ever done. One-third of myasthenic women actually IMPROVE during pregnancy, one-third stay the same and one-third get worse. Yup, you guessed it, I got worse. By my 4th month, I could no longer speak clearly. Because I was so high-risk (35, the MG, diabetic) when I started going to the doctor I had to go every 2 weeks. At 30 weeks I started going every week, and at 34 weeks, twice a week.

Jacob was born with transient (temporary) neonatal MG. He was on a vent for 3 weeks, and in the NICU for a total of 5. He went home 5 weeks to the day he was born. I bawled every day having to leave him in that hospital...my only comfort was knowing that he would be fine, because as soon as MY antibodies worked out of his system he would be completely healthy. And is he ever! He is the picture of health. Thank you God!

For treatment, I take CellCept, which is actually an anti-rejection drug taken by organ transplant recipients. It lowers my hyper-immune system, and keeps some of the MG symptoms at bay. I also take Prednisone, which has the same purpose. I go to the U of M aphersis lab, and have plasmapheresis, or PEX (plasma exchange) every 3 weeks. During plasmapheresis, they put a needle in each arm, take the blood out through one, run it through a machine (basically a fancy centrifuge) which removes the plasma from my blood, add new, "clean" plasma, warm the blood back up, and put it back into the other arm.

For those of you who donate blood and plamsa, THANK YOU. You have literally saved my life. For those of you that haven't but are able, PLEASE donate. You can truly and completely save a life. Without plasmapheresis, I would not be alive.  Please donate at a blood center like the Red Cross or Michigan Blood.  The places that pay you to donate plasma send that plasma oversease for cosmetics and other things.  It is NOT used for patients like me.

I have absolutely no doubts that God saved my life for a purpose. And if that purpose is simply to tell others that they can get through hard times, that's what I will do. I never thought I could have a child. I never thought I could raise a child. But trust me, "ALL things are possible for him who believes."

If you are interested in supporting Myasthenia Gravis research and awareness, you can check out  Purely MG Awareness, a nonprofit organization formed by a mother who lost her 6 year old daughter to MG last September.  You can find them at www.purelymg.org.

I would like to say one last thing: If you or someone you know has a chronic illness, you can do one of several things: first of all, pray for them. Being chronically ill is lonely, isolating and depressing. If you can't always "see" their illness (many times, other than the trach, I look perfectly normal) please don't assume they are crazy, or nothing is wrong with them. You have no idea the hell they may be going through. Secondly, and very importantly, please don't judge. We are not just fat, lazy, unmotivated people who park in handicapped parking because we can't waddle to the front door. We are, first and foremost, people. People like you, who are just a little different. People who are dealing with excruciating circumstances, and may not have the energy to walk to the car after a trip around the store.

Thank you for taking the time to read this, and please join me in praying for a cure.

Never

It never goes away.  Like an unwelcome guest who tells one more joke, one more story, one more....  Like a thunderstorm on the day of an outdoor wedding, it ruins everything.  Like a horrifying nightmare while I am awake, it leaves me scared and angry and frustrated and wondering....

I think if I just try hard enough, or be strong enough, or think more positively, or pray harder... But it never. goes. away.  Like a woodpecker outside my bedroom window at the crack of down... rat-ta-tat-tat, rat-ta-tat-tat...hammering away, over, and over, and over and over...

I want to run from it but it only comes with me.  There is no escape.  I want to run far and fast and just for one day, for one moment, to just be FREE.  But it's impossible.  It's inescapable.  I'm imprisoned by it.  It dictates my lifestyle and the lifestyle of my family.  It wounds.  It mars.  It maims.  I hate it.

I think if I just try hard enough, or be strong enough, or work harder, or longer, or if I was just a better person...or if I did more for the cause, or if I ignored it, it would go away.  But it stays.  On and on and on and on... It's confining.  It's restricting.  It's suffocating.

I want to do what I used to.  Just once.  Go to that party and not worry about food spilling out of my mouth, or choking on my own spit, or dropping my drink because your hand decides to stop working, or tripping because I tell my feet to move and they don't. 

Just once.  Take that trip with my favorite person and not have to worry about packing the medication
and oxygen
and suction machine
and trach crap
and concentrator
and compressor
and emergency information
and sleeping wedge
and ventilator
and extra trach supplies
and....

I just want to GO.

There is no respite from MG.  It. Never. Stops.

If you have a cold, you will eventually get better.  If you get the flu, you will recover.  Even chicken pox or mono or if you break an arm or a leg, you will heal.

I will not.

And that's something I have to live with every minute of every day of my life.

This was written by Owen, my dear MG friend Karen's 10 year old son, for career day at school.  He wants to become a neurologist so that he can find a cure for MG.  The photo was created by Felicia Parker, a mom of a 15-year-old tomorrow-son, Seth, who has MG.

June IS National Myasthenia Gravis Awareness Month.  PLEASE help us find a cure.  For more information, go to www.myasthenia.org

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These are 900 names.   This is my 900th post.  I will admit to typing only 300 "real" names, (we have a lot of Cindy's and Sandy's of all varieties!) and then copied and pasted twice because my hands are about to fall off...But.  June is Myasthenia Gravis Awareness Month, and I wanted you to see what 900 names looked like.  900 people without a cure.  And there are thousands more, tens of thousands more, waiting....waiting for the cure.

Please spread awareness of this horrible disease.  For more information go to www.myasthenia.org.

What You May Not Know About MG

This is a post from last year during National MG Awareness Month.  It bears repeating.

Myasthenia Gravis is called the "snowflake" disease because even though we all have many things in common, there are no two cases of MG that are exactly alike. So yup, I'm a flake.

There is no cure for MG.

Because there is no famous spokesperson for MG (i.e. Michael J. Fox for Parkinson's) there is not a ton of attention drawn to it. That's why I try to hit it pretty hard in June, National MG Awareness Month.

Taking medication for the MG to control the symptoms lowers your immune system to the point that if you get a common cold, you could easily end up in the hospital and die.

Those same medications can also lead to side effects (diabetes, osteoporosis, osteoarthritis, liver and kidney function problems) that then force you to need OTHER medications.

WITH insurance, I've already paid over $4000.00 in prescriptions this year. WITH insurance. Without, I can't imagine.

Many, many people have never heard of Myasthenia Gravis. I was one of them.

Many DOCTORS have never heard of Myasthenia Gravis. Especially non-neurologists, but even some of them. If you happen to find a doc that's NOT a neuro and knows about MG, you've hit the jackpot.

One in seven babies born to a Myasthenic mom will be born with transient neonatal myasthenia gravis. Jacob was. He was in the NICU for 35 days. Jacob was about worst case scenario for neonatal MG. Thank the Lord he will never have to deal with it again.

Everything you read about this talks about AChR receptors, but I am not AChR+, I am MuSK+. Because I have MuSK+ MG, or MMG, I am 7 out of a million.  There needs to be SO much more research done on MuSK+ MG.

MG effects every facet of every area of your life: your friendships, your marriage, your employment, your ability to be independent, your ability to breathe, talk, swallow, chew, walk, stand, blow dry your hair, read or write for long periods of time, the ability to pursue hobbies that you once loved....it can kill, steal and destroy.

June is National Myasthenia Awareness Month. Please join me in praying for a cure. To learn more, or for donation information, go to www.myasthenia.org.

June Is National Myasthenia Gravis Awareness Month

And I got to start it off with an ENT appointment this morning and then plasmapheresis this afternoon.  June is a very important month for people with MG.  While we try to educate people about MG ALL year long, we really push in June.

On June 9 there is a walk in Grand Rapids to raise money and awareness for MG.  I will not be walking, but I will be there will my jewelry, and 50% of all sales will go to the Myasthenia Gravis Foundation of America, Great Lakes chapter.  You don't have to have MG to go and support the cause.

I went 8 years without an official diagnosis.  Five of those years were so detrimental to my health I should have died.  Obviously the Lord wanted me around for a reason, because I am still here.  One example is that the percent of carbon dioxide in my blood was 77.  "Normal" is between 35-45.  My number was higher than what Jacob's was when he was on a ventilator in the NICU after he was born with transient, neonatal MG.  His was like 60.  When mine was 77, I should have been brain dead, or at least have had brain damage, but I was working 55 hours a week.

When I was finally hospitalized I almost died when I had an MRI under sedation because I quit breathing and turned blue.  (If you've ever seen a medical show where they are calling a code blue and everyone comes running and they grab a crash cart and all that?  That was ME on October 13, 2000.   I know, I know, drama queen.) : )

Then I was flown to the U of M for 3 months, and had to be trached to get off the ventilator because I had double MRSA pneumonia.  Three times in 5 years that I could have easily died because NONE of the doctors I went to (and I saw DOZENS) recognized that I had Myasthenia Gravis.

Education about this disease is not optional.  It's crucial.  Education saves lives.  Simple as that.  Thanks for reading, and I hope you share information about this disease with your family and friends.  You never know, you may save a life.