Me and MG (Myasthenia Gravis)
Sometimes life throws you a curve ball or 20. There are days when I'm just DONE. (Please don't feel sorry for me...it's all good). Here are the main points of my battle for life from 1996 and following.
* Six months after getting my tonsils out, I started experiencing double vision. It was July of 1996. I went to an eye muscle specialist, and she told me it was stress. That misdiagnosis ended up almost costing me my life. Double vision is the typical first symptom for a woman in her mid-twenties to present with Myasthenia Gravis.
* For the next 5 years, as my health rapidly declined, every doctor I saw told me I was making all of this up, that I was crazy, overweight, unmotivated.... I couldn't hold my head up. When I spoke it sounded like I had marbles in my mouth, I couldn't walk 20 feet without gasping for air...
* In August of 2000, I had to quit a job that I loved (Operations Manager at a trucking company) because I was choking on my own spit, and no one could understand me when I spoke. My voice was very nasally and it was very difficult to enunciate.
* Two weeks later, on August 26, I married my wonderful husband Doug. We were planning a wedding for February 10, 2001, but because I couldn't work, we just got married in the lobby of our church, so I could have medical insurance. We still planned the big wedding in February.
* At 29 years old, I finally found a doctor to listen to me, and I had a sleep study. I quit breathing for 36 seconds, and my oxygen went down to 27. That is NOT compatible with life. This had been going on for probably 2 years, if not longer. It's a miracle I don't have severe brain damage (no comments from the peanut gallery), let alone that I'm still here.
* On October 13, 2000, I had an MRI under sedation. They laid me flat, I quit breathing, and turned blue. They had to call a code, emergently intubate me, and bag me through the test. Probably nicked my vocal cords. But hey, they didn't let me die!
* On October 17, I was intubated again, and loaded on a helicopter to the University of Michigan, where I stayed just over a month in the neurological ICU. I had been married for 6 WEEKS. I found out later the docs I had didn't think I'd survive an ambulance ride that far. I had NO idea how sick I was.
* The U of M is a teaching hospital. Because of that, they switch medical teams every calendar month. In October, I had great doctors who treated me for Myasthenia Gravis (MG). That was their best educated guess at my diagnosis, since I tested negative or inconclusive to all the other tests.
* In November, I got all new doctors, and they were HORRIBLE. They stopped the treatment I was getting for MG, which was WORKING, and tried to figure out something else. If you ever go to the U of M and see a doctor named Ming Hong, RUN. He stood by my bedside, rubbed my arm and said, "If you would just admit this is all in your head, you'd get better!" And no, I'm not even remotely kidding.
* On November 1st I had a tracheostomy to get me off the ventilator because I had double MRSA pneumonia. It was supposed to be temporary. I still have it; almost 23 years now. As an aside, the reason I have the trach is because my vocal cords are scarred closed. It's called posterior subglottic stenosis. Basically, paralyzed vocal cords. Most likely they were damaged from the emergency intubation, as well as being on a ventilator for 2 weeks. I had surgery in 2001 to try to make an artificial opening for me to breathe through, but my vocal cords scarred over worse. Therefore, I do not breathe above the trach (through my mouth or nose).
* Back to the November idiot "doctors". They told me I had something called chronic axonal motor neuropathy. It basically means chronic muscle issues. It is actually a "real" thing, but it usually presents in something like Guillain-Barre syndrome, where you start getting paralyzed from the feet up. I didn't have that. The definition of this bogus diagnosis: "an insidious progressive sensory or senorimotor polyneuropathy that affects elderly people". I was 29. AND one of the suggested treatments for this is plasmapheresis, which was what the first set of docs were doing (and the 2nd set of docs discontinued!) and I had been improving with it! My personal opinion is that they were too lazy to figure out what was wrong with me because mine was a very complicated case. They gave me pain pills and anxiety meds and sent me home to die.
* There's a philosophy called Occum's Razor. If an event has two possible explanations, the one that requires the fewest assumptions is usually correct. Medically, I've heard "If you hear hoof beats, think horses, not zebras". Well, my friends, I was definitely a zebra! Dr. Hong and his cohorts obviously only saw horses.
* After being home about 7 days, I was trying to take my medication, and one of my pills came out of my trach. By this time it was December, and no one in Grand Rapids would touch me. So off to the U of M emergency room I went. Thank the Good LORD in heaven I had new doctors once again. One of the docs, Dr. Paolo Moretti, looked me dead in the eye and said, "I *will* find out what's wrong with you." And I believed him.
* On December 9, 2000, he came into my room and said, "Okay. You have either one of two things. You could have Myasthenia Gravis, which is treatable, but not curable. Or you have something called Juvenile Bulbar Palsy that is degenerative and terminal." I was one month shy of my 30th birthday, and I was just told I could have a horrible, suffocating, deadly disease. I had been married just over 12 weeks.
When I heard that, the scariest thing happened to me. I couldn't pray. I couldn't find any words to say to God. I wasn't angry, or terrified (right at that moment anyway)...just numb. I've been a Christian as long as I can remember, and I've always talked to God like I would talk to my friends. I don't think prayer has to be formal, or fancy, or use specific words. But even with all that.... I had nothing. And it scared me.
God 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." (ESV)
The Holy Spirit is part of the Trinity (Father God, Son Jesus, Holy Spirit). He is God. He lives in me. If you have accepted Jesus as your Savior, He lives in you too. It's confusing sometimes.... But the Holy Spirit, who dwells in me, and Who is God, intercedes for ME with groaning too deep for words. Now I don't know about you, but I've heard people groan with mourning. No words. Just this deep, guttural, pain-filled groan. That depth of emotion is the Spirit communicating with the Father for ME. 🤯
That was one of the most amazing, faith-building moments of my LIFE. I was sick y'all. Like shouldn't have been alive sick. I had a follow up appointment in February at the neurology clinic at the U of M. You should have seen the reaction of the people there who recognized me. Dr. Albers, the head of the neurology department, looked at me and said, "There is NO medical reason you should be alive. You are a miracle!" Now I don't know if he was a believer, but maybe he is now!😂 He was calling people who had been involved with my care into his office. He was floored. I just told him that God wasn't done with me yet. It wasn't until years later that I saw on my discharge paperwork for "diagnosis", they had written "Juvenile Bulbar Palsy". Apparently that's the conclusion they came to. Thank God they were wrong!
And even though I've suffered through some horrible, horrible things during that time, and since that time, God is still not done with me, because I am still here. I will share more of my horror stories in a future post (aren't you lucky!). I just want you to know, you can live through some *really* difficult stuff, and still fulfill the things that God has in store for you. With His help.
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