My MG Pregnancy Story Part One

 (reposted)

My husband and I were married for 6 weeks when I was hospitalized for some unknown illness. Before I went in, I was a mess. I couldn't walk more than 10 yards without stopping. I couldn't sleep, except for sitting up at the kitchen table, leaning over a stack of pillows. My right hand (I am right handed) was curled up, useless, and even my arm was curled up into my body. I had virtually no grip in my left hand. My speech was slurred to the point of people having a difficult time understanding me. My neck was so weak I had to prop up my head with my arm, because it couldn't hold up my head on its own. Needless to say, I was very, very ill.

When we got married, I was going downhill, but Doug and I both thought it was stress from my job. I was working 50-55 hours a week as an Operations Manager at a Trucking company, and I LOVED it. But I literally thought the stress was killing me. So I quit, and instead of getting better, I got worse. We were married (eloped pretty much) August 26, 2000. (We were still planning a "big" wedding for February, but got married legally in August so I cold be on his insurance, as I had just quit my job. What a God thing that turned out to be!) The month of September was spent going from doctor to doctor to doctor. I heard everything from "You've got a tumor on your spine" to "It's all in your head" to "I have no idea what it could be." In October I had an MRI under sedation, stopped breathing, and had to be emergently intubated. I was admitted to the hospital in Grand Rapids, and flown via helicopter 4 days later to the U of M. I was pretty much out of it for 2 weeks.

I was in and out of the Neuro-ICU (mostly in) for the next 3 months. My husband was by my side...he was committed to me, to God, and to our marriage vows. I knew I picked the right guy!
When we got married, I was 29, and Doug was 30. We kind of both assumed we'd have kids right away and get on with our lives. When I was discharged just before Christmas in 2000, I was told I either had Myasthenia Gravis, which was treatable, but incurable, or bulbar palsy, which was degenerative and terminal. I was 29 years old. The docs decided to treat me as if I had MG, because they really had no other option. If I got better, I would have MG, if I didn't get better, I knew I would die a slow, agonizing death.

Fast forward 4 years (I'm getting better, so obviously I have MG and not bulbar palsy, thank God!). Doug and I do not think it would be wise for me to have a child, but Doug is set on having our own biological child. In what I thought was a Divinely inspired plan, a friend of mine from high school (I'm not sure if she would care if I used her name, so I'll use her initials, LV) volunteered to carry Doug's and my biological child. We couldn't have been more amazed, thankful, or, frankly, surprised. She just completely volunteered, and this was actually something she had mentioned years before as a thing she could do. She had great pregnancies and super easy births...(her youngest was ONE HOUR from first contraction to birth!) We thought it was the perfect plan. We thought God had worked it all out.

It was kind of a nightmare dealing with the legality of surrogacy in Michigan. Whereas in some states, you can pay a surrogate for her services, in Michigan you cannot. You can pay for medical expenses, maternity clothing, things like that that are directly related to the pregnancy, but nothing else. No money, no gifts, nothing. We had to each hire separate attorneys (required by law, not by the generous friend who wanted to do this for us), and pay for each of them. LV's insurance covered a lot of her medical expense, prescriptions needed for her fertility drugs and stuff, which was awesome. Our insurance paid for part of mine too, but they would NOT cover the procedure of transplanting the newly formed baby into LV (to the tune of $3800.00, and that was 6 years ago!) They covered my fertility drugs, and the ultrasounds, and even the in vitro, but not the transfer. We had just enough money in the bank to cover it.

Fertility drugs are hideous. I was the the most evil woman on the planet. I would look at people and just want to scratch their eyes out! I am a generally friendly, kind, loving person by nature. This was SO not like me. The drugs were making me crazy. And the shots HURT. The one burned for like 30 minutes. Ug.

So after "X" amount of time (I can't remember exactly) I go in for the ultrasound to see how many eggs were big enough to remove. We had decided ahead of time that we would take out as many eggs as were big enough, and then fertilize and implant only 2, because if I had more than twins, I would be in BIG trouble. I would have been in trouble with twins! But I was still pretty healthy at this time...my medication was working well, and I was doing quite a bit on my own. I remember I had gone to this particular appointment by myself.

I impatiently waited for what seemed like eternity to go into the exam room for the ultrasound. The nurse came in, started the ultrasound, and started the search for eggs, on each side....and they found...... To be continued!!!!

What MG Does To Me

 

This is me when I can smile, and have control of the muscles in my face.  I can lift my cheeks to smile, you can see my eyes are open, bright, and I feel okay.

This is me after 2 days of doing way too much.  It's 10PM, my face has no muscle tone, I cannot smile, my eyes are half shut, and my right eye is trending inward.  My eyes are dull, and I look like I'm frowning.  I am NOT purposely frowning or pulling my face downward.

Myasthenia Gravis causes facial weakness. When I feel this way, my arms and legs are extremely weak.  I need supplemental oxygen so I don't lose more brain cells.  I can't breathe deeply enough to get enough oxygen to my brain.  My neck is weak and it's a real chore to hold my head up.  If I didn't consciously hold it up with the muscles in my neck, it would simply tip over.  Which has happened, especially in the van.  We go around a corner, and if I am weak, I will tip the way we are turning, and I am not strong enough to right myself.

I can't lift anything.  I can't hold anything in my hand because my grip is weak.

Most of the time my face doesn't look this bad, and people assume I am fine. 

I am not fine.

I will never be "fine" again, unless and until a CURE is found for MG.  June is National MG Awareness Month, and I will be posting as much as possible to raise awareness.  I am not afraid to be bold, to show you my MG weakness, to be vulnerable and lay my soul bare.

WE MUST FIND A CURE FOR THIS ILLNESS BEFORE WE LOSE MORE LIVES.

MG Awareness Month Day Two

This is a video I did nearly two years ago when I had a cold.  I want people to see why I'm such a germophobe.  I have to be.  I have other complications NOW that back then weren't even on the radar.  You can read about those here.

And don't forget to leave a comment here to enter the giveaway for $50.00 from Kerri's Kreations!

Me, MG and My Cold

June is National MG Awareness Month, and I will be doing my best to post every day about MG, and how it effects me and those I love.

Updates

Okay.

I had an echocardiogram last Wednesday, and everything "seems" okay. I have to just wait and see. Which is like TORTURE to me. I shouldn't have asked any questions, because she said I have a leaky valve, but not which one, and told me the number, and a number for my pressures...but not which pressures...and everything overall looked OK. Partial information is worse than none. Now I'm going crazy trying to figure out what's what. And it's making me lose my mind. Slowly.

I also got my Shake-A-Lator VEST. It's bizarre. It reminds me of those old black and white TV shows where they show the people at the "fat farms" or "spa" or whatever with the belt around them that shakes them senseless! It's like going over a super bumpy road for 20 minutes. CRAZY. But it's already helping me get rid of stuff in my lungs. Now we just pray the insurance (MEDICARE) will cover its 80%, because it has a pretty steep pricetag.

I'm waiting to hear about a cough assist machine, and I have a pulmonary function test on the 29th. My goodness. Appointments like crazy! Then of course, I have my 3 plasmapheresis treatments July 6, 8 and 11, and thank the LORD two of my docs were willing to work me in on those days; one being Dr. Lovy, the best pulmonologist in the WORLD and the other is my endocrinologist, Janette, who is the BEST P.A. in the world!!! They are all at At. Mary's, which is an hour from here, so making a trip, especially for a 15 minute diabetic check up is out of the question with gas at $4.00 a gallon. So thanks so much to those two docs for helping us out!

Other than that....I never did get Jacob's cold all the way, HALLELUJAH, and today, I got up at 7:30, had breakfast (thank you hubby), my coffee, and then Doug took Jacob to "throw hay" or something like that. Everyone was so impressed with Jacob. How grown up he is for a 4 year old, how well he speaks, how well behaved he was...I guess I'm not doing such a bad job after all!

But while they were gone, I swept the mudroom AND stairs (with a BROOM!), sorted and washed 3 loads of laundry, did the dishes and did my 20 minute Shake-A-Lator treatment. GO ME!

Don't forget, June is National Myasthenia Gravis Awareness Month!

Stay tuned next week for the start of a series of reviews on Reflecting Him, a Bible study by Carla McDougal.

Catching Up

I'm trying to get caught up....STILL! This year has been a bust, essentially. January was preparing for Florida. February was Florida....almost a total bust. March, April and May thus far have been me coughing and popping ribs. SERIOUSLY. Since we have been home, one of us, (Doug, Jacob or me) have been hurt or sick the. entire. time. Eighty percent has been me. Nice. HOWEVER...Praise the LORD that it's been over a week and NO RIBS OUT!!!! Whoo-Hooo!!!

So. Then Thursday I have this migraine from the pit of hell. I mean PIT. Ug. Pull-the-curtains-and-beg-everyone-to-be-quiet migraine. Almost-throw-up migraine. With a very active 3 1/2 year old and 3 dogs...not so much. Thankfully my dear friend Shawn came to pick Jacob up in the afternoon, and all the doggies took a nap, so I was able to sit in my nice, dark living room and very quietly watch a movie. At least I didn't have to have my sunglasses on this time. Curtains with the color name "espresso" help!

So June is Myasthenia Gravis Awareness Month. I'm always debating what to do...I'm going to contact the local papers, and maybe churches. I'm terrified of calling the News because I DO NOT want to be on camera.

Anywho...I promise to be a better blogger!!! I should be inside a lot more this week because it's going to be hot, Hot, HOT! Which is not so good for the MG. High heat and humidity make me feel "unplugged." Yup, like someone literally unplugs me, and all my energy is gone... {sigh.} Oh, well. We'll make it.

Happy Sunday everyone!