Tuesday, November 19, 2013

The Cow

So as many of you know, I live on a farm.  I was born in the city, raised in the city, went to college in the country (Indiana), thought I'd never survive among all that CORN, grew to love it, moved home, hated the traffic, grew used to it again, grew to LOVE "city life" again, loved going to BIG cities, grew to HATE big cities, moved to Egypt.  (Holy run-on-sentence, Batman!)

Well.  I am still not 100% used to farm life.  You all can read more about some tales from the farm, HERE and HERE for example.  There are others, but not as funny.  Some are very, very serious.

But the other day my friend Shawn and her sister Sandy were here cleaning.  They were in the pantry doing some pretty heavy-duty stuff and I thought the dogs should probably go out since it had been a while.  So I asked Jacob to let the dogs out... well he got about as far as the kitchen window, and said, "Um, mom?"

I was like, now what?!?  We had a hornet problem this summer (to be blogged about in the near future) so I was thinking maybe it was another hornet.  I looked out the window, and there was our "smallest" cow, Hangar aka "Little" Brown Cow, standing on the WRONG side of the fence!  I flipped out.

Thank the good Lord Shawn has been around large animals most of her life.  Me?  Not so much.  So she and her sister Sandy calmly go outside and "guarded" the cows.  She had called her husband Ron, and I called Doug.  I rambled something quite loudly about Little Brown Cow being between the house and the walnut tree and what do I do and can you get here NOW please?? 

When I saw the van pull in a millisecond later, I was thinking, I didn't know our van had Nitrous in it...  Doug came running in the house to get something and I was like, "I do NOT want to know how fast you were driving, do I?" He just looked at me.

In the meantime, Ron had gotten here with their daughter Tiffani, who works with horses, and Ron was like, "I think Doug passed me..."

Oy.  They got the bugger in without incident, but my goodness. NEVER a dull moment.

Sigh.  Stayed tuned for more tales from the farm!

Friday, November 15, 2013

I'm Back!

Hey everyone!  I am back!!

I have missed everyone...missed blogging.  But my hand took a LOT longer to recover from surgery than I thought.  So long that I cancelled my right hand (carpal tunnel), and I'm not even sure I'm going to get it done.  My left hand has numb spots, and I get some serious nerve pain once in a while.  I don't have to wear my brace at night anymore, so THAT'S awesome... But like I said, the recovery was a lot worse and took longer than I thought.  So we will just have to wait and see.

So what else is new... Jacob is 7.  Can't believe it!  He's amazing.  Brilliant.  Crazy.  LOUD.  Drives me crazy, but I love him so much it doesn't matter.  Can't imagine how DULL my life was before him!  He's so funny, and makes me laugh all the time.  Such a little man.

Doug and I are doing well... we celebrated our 13th wedding anniversary shortly after Jacob's birthday.

The MG is still a hideous monster.  It's a brutal, frustrating, unyielding, wicked disease with no cure.  I've been more symptomatic lately, but my stress level has been through the roof.  I'm homeschooling Jacob, and that is MORE than a full time job.  Then there's all the household goodness I take care of, my jewelry business (which has been pretty much in the tank this year....BUT Christmas is coming and I will be putting some gorgeous goodies on this weekend, so check out www.kerriscreations.com for those), other health stuff; had a little scare with a spot on my lung, but it's all good.  God's got me.

We have 3 cows, Oats, Hay and Hangar (a cut of steak).  Stay tuned for more stories from the farm.  My goodness, never a dull moment around here.  

I have a new writing opportunity in the works; more information will be coming soon on that, so stay tuned.  It's going to be AWESOME.  I've got some book reviews coming up, and of course, just some stories of life with MG.

We also, FINALLY, found a church to call home.  Covey Hill Baptist Church in Paw Paw.  It's really just past Gobles, but if you're not from about here, you're probably thinking where in the world...??  Anyway.  The most important thing is that we feel at home.  I love it.  Jacob loves it.  Doug loves it.  Our pastor is AMAZING.  What a gift from God that man has received!!  He is SO wise, so talented at speaking and sharing and teaching God's Word.  Love it!

So that's it for now.  Stay tuned, because there are exciting things coming down the pike! 

Monday, July 22, 2013

Surgery

Hey all....

Having surgery on Wednesday.  Carpal tunnel.  So I will be MIA for a while.  On hiatus if you will.
I need both wrists done, but starting with the left and seeing how that's going.  I'll be back when I can! (Prayers MUCH appreciated!!)

In the meantime, visit www.kerriscreations.com and do a little shopping!

God Bless.

Wednesday, July 17, 2013

Book Review: On a Quest for Christ by Lisa Are Wulf


"Your spiritual story is significant.  Who you are makes a difference.  God ordained a path for you even before the dawn of creation.  The impact of your life is incalculable." - Lisa Are Wulf

Because I have been involved in church my entire life, and have known God my entire life, I didn't really think I'd get a ton out of this book.  The cover of this book says, "tracing the footsteps of your spiritual journey."  I was thinking, I know the steps.  I was born into a Christian home, I asked Jesus into my heart when I was 8 years old (because of my 3rd grade teacher, Miss Jonker), I've gone to church and read the Bible my whole life...what's there to trace?

Well.  I was pleasantly surprised by this book.  It's basically a 30-day devotional, and each chapter is quite short, really.  There is the same basic format to each chapter;  there is a Bible passage, some words from the author, then she tells bits of her personal story in each one. 

There is also a place, prompted by her questions, for you to tell your story, bit by bit.  What I found so amazing is that Ms. Wulf has a knack of cutting right to your heart in very few words.  When I was initially scanning the book, I thought, "Wow, these sure are short chapters.  Not many questions.  Probably pretty surface stuff."

I'm happy to report I was wrong on all counts.  I have been a Christian for as long as I can remember, but On a Quest for Christ had me yearning to go deeper...I found myself thinking of things I had forgotten, memories of my journey with Christ that had been crowded out of my mind by the busyness of every day life.

I would highly recommend this book to anyone interested in putting their spiritual story together in one place, no matter where you are on your journey right now.  I have grown because of this book, and because I am not quite finished, I eagerly anticipate doing more.

You can check out all of the information about the book and author here.

If you'd like to see the author's main website, go to http://www.onaquestforchrist.com/

To find Lisa on facebook, please go here: https://www.facebook.com/onaquestforchrist

To purchase this book on amazon.com, please click here.

I am SURE you will enjoy it!


 Disclaimer:  I received a free copy of this book to review. I was not required to write a positive review nor was I compensated in any other way. The opinions I have expressed are my own. I am disclosing this in accordance with the FTC Regulations. I am part of The CWA Review Crew.

Saturday, July 13, 2013

Taking A Break

Well, the time has come for me to admit defeat.  Hopefully temporarily.  My hands are really in rough shape from the carpal tunnel.  It seems the EMG has made it worse.

Therefore, other than my book reviews and an occasional update, I'm going to be taking a break from blogging until I get my hands better.

You can always email me or contact me through my business site, wwwkerriscreations.com.

Peace Out.

Coming Soon....Book Review

I am reading a book called On a Quest for Christ by Lisa A. Wulf.  It is proving to be a great read, and I will be posting my review next week.  In the meantime, here is some information to pique your interest....


Understanding your personal journey opens a door to new spiritual growth. "On a Quest for Christ," a 30-day devotional, will help you trace your steps from the first whispers of faith to resting in God's arms. Gentle questions guide the telling of your story while prayers and comforting scripture enrich your reflections. The "Christ Quest Time Map" helps you see the path ahead as you look back on your journey. Experience healing and hope as you deepen your spiritual self-awareness and find Christ at critical points in your life.

Lisa Are Wulf is a fresh voice with a pure and transparent heart. "On a Quest for Christ" invites you into her own journey with personal vignettes to guide you in tracing your spiritual path. Let her lead you to places along the way where Christ was at work in your life. As she says, "Your spiritual story is significant. Who you are makes a difference. The impact of your life is incalculable."



 

About Lisa
As a ministry leader and Fuller Seminary graduate, Lisa ArĂ© Wulf has a gift for creative communication that touches hearts and transforms lives.
  
A mid-life convert to Christ, Lisa's articles have appeared in dozens of Christian publications. She has spoken to women's groups and churches across the country.

Before entering the ministry, Lisa served eight years on the Colorado Springs City Council. She is also a retired CPA, a former radio talk show host, an accounting professor, and was a violinist.

She and her husband, Calvin, have four children and are happy empty-nesters. They currently reside in Colorado.

Saturday, July 6, 2013

Comedy Of Errors

So I found this definition on the web, and it couldn't be more fitting:  Comedy of errors: A ludicrous event or sequence of events.  That was me yesterday.  Ludicrous meaning absurd or ridiculous as opposed to funny.

Thursday night I was just really depressed.  Sick and tired of being sick and tired.  So many people hurting.  So few people doing anything about it.  The economy.  The politics of everything.  I was just overwhelmed with life.

So I asked for prayer, and KNEW Friday would be a better day.  Um, not so much.

Thursday night we brought Snowball, my favorite bunny, in the house.  We have 2 rabbit cages outside now, and have 3 rabbits.  So we rotate having one in the mudroom to pet and play with.  So Thursday night it was Snowy's turn.  I knew right away something wasn't right.  He wasn't acting like his playful, silly self.

Snowball is out half-lop rabbit.  Only he's more of a half-half lop.  One of his ears hangs down, and the other is flipped over his head toward the other ear.  He's just sweet and precious.

But Thursday, something was very wrong.  Friday morning when I got up (Jacob was still sleeping, thank God) it became apparent that something was terminally wrong.  It was neurological in nature; I could tell by the way he kept trying to hold his head up, and trying to get up, but just kept falling over.

I called Doug in hysterics, and told him he had to come home and do something before Jacob got up and saw him like that.  It was just brutal.  I was just sobbing and sobbing.  Snowball was a "special" bunny.  He most likely had some other kind of deformation somewhere besides his ear.  But he was PRECIOUS. And he was mine.  And now he was dying.

So Doug came home and took care of it, and buried him under the apple tree.  Jacob, thank GOD, woke up and came downstairs JUST after Doug was done.  Then I had to explain to him why I didn't let him say goobye to Snowy.  It just plain stunk.

THEN, what I thought was a mosquito bite from the 3rd of July fireworks turned out to be some kind of cut all along the back of my knee...right where the line is from the bend?  Mmm-hm.  My darn legs are so swollen...especially the left one (the one with the gash) that I'm thinking, "Is it possible for skin to explode????"  Don't know how I'm going to deal with that.  Got gauze and a bunch of tape and medicine for boo-boos.  We'll see what happens. Doug says it's probably necrotizing fasciitis.  He's SO not funny.

So then I decide to take a shower.  Miss Mindy was here playing with Jacob outside, but I still had the doors to the bathroom shut.  After my shower (in which I nearly drown bending a little bit the wrong way to pick up the shampoo...water went in my trach and I horfed up a lung), the bathroom was so steamy and hot I could barely breathe.  So I looked outside to make sure they were still out there, and streaked through my office to shut the door to the living room so I could open the one bathroom door and get some air.  That helped a little.

Finish getting dressed.  Go to open the office door, and it will not open.  The door knob is just spinning.  Lovely.  Thankfully there was another way out and it opened from the other end!  I mean seriously....no one could even WRITE this stuff!  It's like a bad country song...."Woke up and my bunny was flip-floppin'....ain't gonna be no more hoppin'...then my knee exploded in back....looked like I had a razor attack....got locked in my office, the door knob just spun....Lord ya know that this just ain't no fun....."

And then you say, "well, at least it can't get any worse..."  Oh yes it can!

I had a few errands to run. Went to the Perrigo store to get Benedryl.  Closed.  {Sigh.} So I go to pick up my new glasses and sunglasses.  I haven't been able to wear sunglasses since I've had prisms in my glasses because my sunglasses don't have prisms and they make my eyes hurt and go cross-eyed if I have them on too long. (Holy long sentence, Batman!)

So I try on my new glasses, awesome.  Love em.  The guy says, "Can you see?"  I'm like, duh, they're brand new glasses, but I didn't say anything.

Then he came back with my new snazzy sunglasses.  I said, "Oh my gosh I'm so excited!  I squinted all the way here!  I've been looking forward to these sunglasses for you don't know HOW long!"  So I try them on.   I can't see.  I'm like REALLY?!??! At first I'm blinking my eyes, feeling like one has a huge smudge across my whole eye.  Nope.  They made the left lens wrong.  {Sigh}. Since it was Friday, almost 5:00, no one will touch them til Monday.

"....then I went to the doctor to pick up new eyes...they told me they're ready, but it's all been a lie...{make sure you're doing your best country twang}....My feet are so swollen, none of my shoes fit....Before anything else happens, I'm just gonna quit!"

Ba dum bum.



Sunday, June 30, 2013

Letter To God

Well, God, another MG Awareness Month has come and gone.... God, please don't let people forget.  Please don't let people forget people like Jessica, who lost her 6 year old precious little girl because of this horrific disease.

Please don't let people forget, amidst the fireworks, summer vacations, back to school events and so on, that real people are suffering every day from this all too real disease.

People like Robin, who just got off the vent, Lord.  Who had to have a tube down her throat to breathe for her because she was too weak. We are so, so thankful that you brought her through, Father.  That you gave her strength. 

People like Jen, who, like most myasthenics, can't handle the heat and humidity of this past couple of weeks, and ended up in the hospital.

People like Charlie, and Karen, and Lorraine, who have added health problems on TOP of MG... Oh, Lord Jesus, take their pain away. Heal them.  And don't let them forget how much YOU love them.

Father there are so many.  Way too many.  I just don't want any of them forgotten, Lord!  We need a cure.  We need people to not forget. I am crying out to you...Please God.  Let someone who CAN, finance research.  Let people be moved to give to smaller organizations that are fighting for every penny to use wisely to help others.

Lord, you know every name.  You know every symptom.  You know every heartbeat. 
Let them not be forgotten.


Wednesday, June 26, 2013

Myasthenia Gravis Awareness Month

Myasthenia Gravis Awareness Month is coming to a close.  July 1 will come and go, and another MG Awareness Month will be in the books.

But there is something I challenge all of you to think about:  Myasthenia Gravis NEVER goes away.  Junes will come and go, but MG, unless and until we find a cure, will not.

Some of us will eventually change our profile picture back, and stop posting every day about the disease that has taken so much from us.

MG has taken my singing voice.  It has taken away my ability to breathe naturally (without the trach).  It has taken away my ability to work.  It has taken away my social life.  I have to worry about germs all. the. time.

After this last winter, being mostly sick from October through May, I have to be even more careful. It seems that my lungs are getting worse every year.  What I wouldn't give for a carefree day to go to all the public places I want to without freaking out about getting sick.

The Children's Museum.  The movies!  The zoo.  The fair.  Everywhere I go I just see filth and germs.  I have to so I can protect myself.  But it gets so old feeling like a freak.  Wiping tables down wherever I go.  Keeping the hand sanitizing companies in business.  Trying to raise a "normal" kid who's not a germophobe or hypochondriac.

That's the hardest.  What it does to Jacob.

Anyway.  My lament is over for today.  Please don't forget: MG is not a once-a-month event.  Nor should Awareness be....

Monday, June 24, 2013

My Hope

"Find rest, O my soul, in God alone;
my Hope comes from Him.
HE ALONE is my salvation;
He is my Fortress, I will not be shaken.
My salvation and my honor depend on God;
HE is my Mighty Rock, my Refuge."
Psalm 62:5-7

Having myasthenia gravis is not fun.  There is NOTHING good about it.  Except maybe for the fact that it has caused me to depend further on God for everything.  He has always been my Hope; but when there was NO hope at all in the physical realm, Eternal Hope literally kept me alive.

Sometimes it's the ONLY thing that keeps me going.  Yes, I have a wonderful family.  Yes, I have made incredible friends.  But when it comes right down to brass tacks, I am the one with this disease.  I am the one who lives it out.  I am the one who suffers the symptoms and weakness and has had to give up many dreams.  Yes, I know my husband has too.  But only I walk the road that is MG.  Me, and God.

And He IS my Hope.

My devotion this morning ended with this true and profound statement:  "In the world, dependency is seem as immaturity.  But in My kingdom, dependence on Me is a prime measure of maturity." (Sarah Young, Jesus Calling, pg 183). emphasis mine

I used to curse my dependence.  Not so much on God, but on my husband, my family, my friends.  I was one of the most INdependent people I knew.  I had a fabulous job that I loved, I lived on my own, I made my own decisions, I didn't have anyone telling me what to do...  I LOVED not having to depend on anyone.

All that changed as the symptoms from MG started getting worse.  My first symptom was July of 1996.  I had to quit my job on August 14, 2000 because I wasn't sleeping, I was choking on my own spit, and I couldn't enunciate well enough for anyone to understand me.  Quitting that job was one of the hardest things I'd ever done.  I'm NOT a quitter.

As my disease progressed, so did my dependence on others.  And that's when it really all became about dependence on God.  At first I didn't really have a choice.  It was up to Him whether I lived or died. 

But now, I choose dependence on God.  Because, come to find out, I DON'T always make the greatest decisions!  Shocker!  So dependence has lost is negative connotations in my life.  Dependence on God equals freedom.  Didn't make sense to me either until I had to walk it out.

And I'm thankful I stuck to it.  Because without God, I would have no Hope.  And without Hope, I would not have life.

Sunday, June 23, 2013

MG And Hot, Humid Weather

Oh my.  It's been a whirlwind of a weekend.

Friday night, my friend Mary came in from out of town to spend the night.  Prior to her arrival about 4, I had done 2 loads of laundry, my friend Mindy came by to help out for a bit, and I had taken a shower.  Typically I would have been done by 4.

But Mary and I talked until like 10 that night, with the exception for eating my husband's amazing dinner.  It was so nice to chat with an adult female!!!

Saturday morning we got up, got ready, and talked for just a bit and then went to meet 3 other ladies for lunch.  All 5 of us went to school with each other (college), and some hadn't seen each other for 20 years.

Lunch was awesome. Mary had to go back home after lunch, so we all parted ways.  Doug and Jacob had been at an auction and gun show, and picked me up at the restaurant.  Well, everyone had to meet Jacob because I had run my mouth about him as usual. :)

When Doug went to start the truck again, nothing.  Click. Tried again. Click.  Nothing. Sometimes Doug has to tap the starter under the truck and it will start.  So he tapped.  It did not start.  I went back in the restaurant to see if anyone had jumper cables.  (Mary was going to stay but I told her to leave...we were fine.)

The manager (Aaron at Uccello's in Grandville for anyone local) came out with jumper cables in the sweltering heat and humidity and tried jumping the truck.  Nothing doing.  So Jacob and I waited inside while Doug tried more stuff.  Aaron offered Jacob and I water, or whatever we wanted to drink, but we had water.  He was SO nice.

Finally I ask Doug if Sears Auto is open (across the 2, one-way lanes of traffic separated by hilly wood-chipped covered islands).  He goes to check, comes back, not only are they open, they are also open til 7.  PLUS, four men came over to PUSH the truck all the way there.  They had to go around the parking lot, down the road a little bit, stop at a 3 way stop sign while mall traffic poured in... Then all of the sudden I see Doug jump out of the truck and start pushing as well.  Incline.

Meanwhile, Jacob and I started walking across the traffic, islands, parking lots, etc....by the time I got to the second island I honestly didn't know if I was going to make it.  This is the hottest weather we've had in a LONG time, and I was NOT doing well.  My MG does NOT respond well to hot weather.

Thankfully they were able to get the part, fix the truck, and after a brief cooling off period at my mom's (she came to pick us up and go back to her house for a bit), we got the truck, still had to hit 2 stores to get things I was planning on getting after LUNCH, and then home by about 9:20 PM.  Then we had to have supper!

Oy.  Very, very very LONG day!!

So, if you ever need to get your car fixed, and you live in the Grand Rapids, Wyoming, Grandville, Allendale, Hudsonville area, go to the Sears auto place on Wilson.  They are AWESOME!!!

Thursday, June 20, 2013

Doctors, Doctors, and More Doctors!!



One thing that people who DON’T have a chronic illness might not think of is how many doctors I actually have.  There’s the usual ones that anyone would have: dentist, family doctor for colds or whatever, the GYN...okay not EVERYONE goes here... (I actually see my family doctor’s PAC who is a wonderful lady), chiropractor, and eye doctor.  But then there’s also the orthopedist for my wrists (carpal tunnel from typing so much because I can’t grip a pen), my diabetic specialist, my neurologist, my ENT, my pulmonologist, and my foot doctor.  That’s 11 doctors.  Plus I have the wonderful nurses and technicians that do my plasmapheresis.

In the last 16 days, I have had 6 appointments.  I have driven to them all.  I have had 2 dental appointments, a “med check” appointment with my family doc, my women’s annual exam, an appointment with my orthopedist, and my annual eye exam.  I can’t normally do any of these in the winter because of my health.  So June is a very busy month for me, because that’s when I get all the “mandatory” stuff in.

I have pheresis coming up the 26th and 28th, and apptointments on July 2, 9, 10 and 16.  It's INSANE.  Seriously crazy.  Plus June is MG Awareness Month, and then there's just life that happens.  I'm too busy to be a sick person! LOL


Tuesday, June 18, 2013

Myasthenia Gravis (and Disease in General) SUCKS

I can't muster any funnies today.  No witty sarcasm.  No sunshine or rainbows.  I'm just sad and pissed off.  I HATE this disease.  I hate what it's done to people I love, and I HATE what it's done to me.  I tired ALL the time, if I manage to struggle my way to an appointment in town by myself and park in handicapped, I get dirty looks. 

I'm exhausted, I'm burned out, I do WAY too much every day, I push my body and mind and emotions beyond their limits every. single. day.  And now I'm told I need to do more.

Well, I can't.  I've reached my limit in more than one way.  I'm on the precipice of sanity.  One person is NOT meant to carry this much burden.

Yes, I have God to carry my burdens.  Yes, I know the verses and I know the songs.  And I can do that, emotionally.  But physically, I'M still the one here every day dealing with 100 things when my body can only do 30.  So far, except for a couple of wonderful volunteers a couple of hours every other week, it's ALL on me.

And I honestly don't know how much more I can take.

June is MG Awareness month.  And today, I want you to be AWARE that MG SUCKS!


Monday, June 17, 2013

Ode to Energy (Or the Lack ThereOf)

Energy, my energy...
Where oh where did you go?
You seem to have left me
Wand'ring 'tween to and fro.

I have dogs to take care of
And a boy child to raise!
You cannot continue
To sap all my days

Full of schooling and learning
And cleaning and chores!
Energy my energy,
I miss you much more

Than I ever could fathom
Tis' true, you can't know.
I used to be full of you
Now I can't even blow

A whistle, not one note!
Can't sing anymore either;
MG took the muscles
I need for my breather!

Energy my energy,
I wish you'd come back.
But MG antibodies
Went on the attack.

But there are some facets
Of life you can't touch.
Like the child I have
That I love so, so much.

And a husband who loves me
Through thick and through thin.
So, Sap-Sucking Energy
You never will win!

You can't take my spirit!
You can't take my joy!
You can't take my will
Or the Faith I employ

To keep fighting the fight
Of this chronic disease.
My God is my Strength!
So do as you please.

I know that I'm loved
By a host of dear friends.
But because of you, Energy,
This is The End.



All material on this blog is property of Kerri Sweeris and copyrighted as such.





Sunday, June 16, 2013

Electricity

Electricity.  We all take it for granted. But what happens when it's not there?  For most, it's a mere inconvenience.  But for a myasthenic, it can be life threatening.

We had a nasty storm last Thursday night.  Right before midnight Friday, there was a rattling of windows and rain was pouring down.  The house was literally shaking.  I thought the air conditioner  was going to fly right into the dining room through the window. It was insane.

And then it was dark.

Doug came down from upstairs; he had been asleep already.  Jacob, bless his little heart, slept through the whole thing.  Doug was looking around outside, and told me part of the walnut tree had fallen down.

In the morning, this is what we saw:
 You can see how big the part that fell was by how small Doug looks!

The branches ripped the conduit and meter right off the house, not to mention the power line, which landed on Doug's truck.  Thank God the power was out before the line fell.  It would have been arcing and sparking all over the place.
 This is where the massive branches were ripped off.

This is what is left standing of a 50-foot, probably 100 year old walnut tree.  MORE than half of it fell.  If it had fallen in another direction, it would have hit the house, smashed windows, destroyed the roof.... needless to say, the rest will be coming down as well.

Speaking of wells, there is ANOTHER miracle from God:
That silver thing sticking up is the cover to our well.  There are branches all around it.  If that tree had fallen 6 inches one way or the other, it would have smashed the well, and we would have had to repair THAT.

We did have to have an electrician come out and put the line back up, because Consumer's won't do that.  For those of you reading this that aren't local, we have ONE electric company.  And they are huge.  And they don't care who you are.

For example:  On my account, it shows that I have life support equipment in my home that requires electricity.  I have several things that I NEED for survival that require electricity.  My ventilator (which DOES have a six hour battery back-up, but when you're without power for 36 hours, that doesn't help much), my suction machine, my nebulizer, my cough assist, my VEST (aka shak-a-lator), my oxygen compressor and my oxygen concentrator.

At night, I have to have the vent or I quit breathing in my sleep.  I have to have the oxygen, because even with the vent my oxygen desats to a dangerous level.  Without the nebulizer and suction machine I would be unable to clear my airway.  The cough assist and VEST prevent me from getting pneumonia (most of the time).  Not to mention air conditioning, but they don't consider that life support.

So I called Consumer's to get a restoration update.  I asked to speak with someone to make sure they saw my account was flagged as having life support equipment.  The woman I spoke with said, "Yes, I see that on here.  But that's really only for billing purposes."  You see, we get a WHOPPING $5.00 discount a MONTH for all the machines that I run for my health; $5.00 total, not for each machine. That's why they need to know I'm on life support.  Not to get the power on more quickly, but to give me $5.00 off my bill every month.

{crickets}.

REALLY??? Now, this was according to a customer service person answering a huge volume of calls during a widespread storm that caused a lot of damage.  I'm assuming she was knocked on the head by something heavy, because if that indeed is true, heads. will. roll.

I have a call in to a guy at Consumer's who I spoke with about my previous debacle with Consumer's a few years ago.  You can refresh your memory here and here.  He did not return my call Friday, so I will give him one more day, call him at end of business tomorrow, and if I haven't heard from him by then, I shall have to go to the TV News and let them find the answers.

So while having no power was a pain in the butt, and I had two fitful nights of sleeplessness, God protected us in SO many ways by not allowing that tree to fall on our house, Doug's truck, or the well.  Thank you Lord!

Saturday, June 15, 2013

My Pregnancy Story Part Five: The NICU

(reposted)

The moment I held my baby for the first time....time stood still. Nothing else mattered. It's as if the world faded away, and it was just me, and just him; this astounding little being that I had grown in my womb. I was overwhelmed with joy. Jacob Douglas Sweeris. He was mine. And I was his. Forever.

The doctors had not dealt with neonatal MG very often. I'm sure some were seeing their first case. They wanted to see if his condition could have been due to being a baby of a diabetic, which apparently has some of the same (milder) symptoms of neonatal MG. I knew better. I should have pushed. He was so floppy. No muscle tone. You know how most babies clench their little fists and wave their arms and kick their little legs? Jacob just lay there kind of splayed open like a little frog. But part of me wanted so desperately to believe that it WAS just the infant of a diabetic thing, and that in 5 days when I went home he would come with me. It was not to be.

For 5 days, I went to the NICU every 3 hours, to feed Jacob through his feeding tube. We changed his diaper. I was too weak to stand or walk, so I was still in a wheelchair, and on oxygen 24/7. Jacob looked so tiny, yet SO huge! Every other baby in the NICU was like 1 - 3 pounds, fighting for their tiny little lives. My hulk was 8.5, and 21 inches long! They had him in a bigger bed, because the little isolets were just too small!

I was exhausted, but nothing was going to stop me from being there every 3 hours to hold my son. I was getting very little sleep, and my anxiety was through the roof. Doug had to stay in my room overnight because I would have panic attack after panic attack. I would have parked in the NICU if I was strong enough to get there by myself. But no one would take me because of my condition, and I was supposed to be resting. Fat chance.

I was discharged on Saturday, August 19. Without my son. Just before we left, Jacob's main doctor came into my room and told me they were putting Jacob on a C-PAP machine (Continuous Positive Airway Pressure) to help him breathe. His carbon dioxide levels were still too high. I cried.

As soon as we got home, the phone rang. It was Jacob's doctor again. The C-PAP wasn't working, so they put him on a ventilator. I cried harder.

The nights were the worst, because during the day, my mom would go up every morning and sit with Jacob, and sing to him. Doug and I would go up late morning, early afternoon, and stay til evening. Then we would go home, and try to go to bed.

My arms were empty, my belly was empty....I had just gone through this 40 week ordeal, and I had nothing to show for it. The ache in my heart was almost unbearable. We checked on Jacob every night around midnight by calling the NICU. I was healing from a C-section, still super-weak from the MG, and this was my life.

When I saw Jacob on the vent, I just bawled. I KNEW what it felt like, having been on a vent in the hospital in 2000 for several weeks. I KNEW it wasn't comfortable. I KNEW it was irritating and hurt, and it was hard to get comfortable. The entire time he was on the vent, I was the only one to hold him. I was not going to let him not be held just because he was on a vent. He had so little human contact, really....My mom was still going up every morning, God bless her. But I was the only one to hold him. I cried every day.

Finally they decided to do something called IVIG. I didn't want them to, because it didn't work my MY M.G., and I figured if Jacob had MY anitbodies, it wouldn't work for him either. And not only did it not work for me, it gave me a fever, flu-like symptoms and a migraine. Doug and I talked about it, and he thought we should try it. The doctors said it could very likely work for him, even if it didn't work for me. I finally gave in.

They got an IV in his foot, but it didn't stay put past the first day. IVIG is a 3-4 day treatment. So they had to put an IV in his little forehead. I have never been so sad in my whole life. I had to leave the room, or I probably would have killed someone. And the worst part of Jacob being on the vent? When he cried, which he RARELY did, they was no sound. You just saw this wrinkly little face, the little body tensing, but no sound. It was HORRIBLE! I truly thought my heart would break.
Most of Jacob's baby pictures are in Creative Memories albums, so I scanned a page so you can see my poor little boy. This was the MAIN reason I didn't want to birth my own child. I knew this could happen, but I NEVER envisioned it this bad. No one did. This was pretty much worst case scenario, once again.

We put Bible verses all around Jacob's crib, and prayed for him every day. Many of our friends and family were praying as well. The ONLY thing that kept me sane was that I KNEW Jacob would get better. All the other parents in the NICU didn't KNOW that. Every day Jacob was getting a little stronger, because every day was one day closer to when my antibodies would completely be out of his system.

The IVIG days were the worst. It did start improving after that. He went on and off the vent like 3 times...they thought he was strong enough, put him on the C-PAP (which he HATED because he had to wear this knit cap and have tubes blowing air up his nose. I've been on a C-PAP too, and they are miserable!

About 10 days before he went home, he was put in a big boy crib. It was metal, and small, but it was HUGE compared to the teeny isolets with the teeny babies in there. It was just tragic seeing those itty bitty babies...not knowing if they would make it or not. Sadness permeated my life at that time. One day when we got there Jacob was in a bright yellow bean bag, in his crib, batting at his mobile. It was one of the best sights I had ever seen! I remember the first time he kicked off his blanket! I was SO excited, because that meant he was getting stronger!

Little by little Jacob improved, and was able to get off the vent, and be on oxygen only. He still had the feeding tube, because he wasn't taking all of his feedings by bottle yet. I wasn't nursing because I had to get right back on my CellCept so I would be able to take care of this child! Eventually he was weaned off the oxygen. The only thing keeping him there was feeding. I was like, I want to take my baby HOME!!! I can tube feed him at home...everything else was fine. I had to really push to get him home, but I thought, they have had him long enough!!

So FINALLY, after 35 days, the day that Jacob was 5 weeks old, we got to take him home. That was probably the happiest day of my life. It was finally over.

Once we got Jacob home he thrived. He had his 6 week checkup on the 26th, and we pulled the feeding tube out that day. He was taking 90% of his feedings by bottle, and although it wasn't easy to feed him, we both felt like the tube was just getting in the way.

At his 6 week checkup, his pediatrician, who hadn't seen him yet (because he wasn't affiliated with Jacob's birth hospital) read through his chart before he came in. After he examined Jacob, he told us that unless he had read that chart, he never would have known that Jacob wasn't just a normal, healthy six week old baby. Hallelujah!

Jacob was a bit behind physically...His upper body remained weak for several months. But he was healthy, and whole, and perfect. He was SUCH a good baby. He only cried when he was tired, hungry or needed his diaper changed. He NEVER cried just to cry. He never fussed. He was amazing.
And he still is. I thank God every day for my wonderful gift. This priceless child named Jacob that came into my life and changed it forever. Of course I wish I could have spared him what he went though, but if we had to go through it to get my Jacob, it was worth it. He is the light of my life. Mommy loves you Jacob. More than you could ever know.

Friday, June 14, 2013

My MG Pregnancy Story Part Four: Birth and Aftermath

(reposted)

So we check in at 0'dark thirty and get to a room. They try Cytotek one last time, as I have dilated to one. At noon, they started pitocin, because there was no further reaction from the Cytotek. They started at a fairly low dose, and increased it by 4 units every hour. I think I was up to 32, which is quite high if I remember correctly. I was having contractions, but nothing to write home about. No further dilation, no effacing, nothing.

At 6 PM they stopped the pit so I could eat supper. Then at 10PM, they started it up again. If you've never had a baby, imagine trying to sleep with a baby heartbeat monitor wrapped around your belly, plus another wrap to measure any contractions, and being on pitocin (a medicine to stimulate labor) all. night.long. Needless to say, I did not sleep. No sleep + MG = nothing good.

Tuesday, August 15 arrives. They check me again in the morning. Nada. They crank up the pit again. At about 10:30 they manage to break my water, even though I was still only dilated to one. Now THAT is a bizarre feeling.

I continued to have contractions, and about 1:00-1:30 I got my epidural. We were a bit concerned about having an epi, but the docs recommended it as the safest way for me, because if I had to deal with the pain on top of the stress, the MG would flare like crazy and I wouldn't have a prayer of delivering without a C-section. It was a little scary, because at first I couldn't move my legs at all...but Doug helped me find a better position and I was okay.

Obviously I'm tired. Borderline exhaustion. My spirits are still pretty good, but I'm fading FAST. At about 2:30, Dr. Lavery came in and checked again. No progress. So I said what are we looking at? He basically said if I started dilating right then, it would probably be 4-6 hours til I was at 10, then a minimum of 3 hours pushing. I looked at my husband, looked at the doc, and said, "I'm done. C-section please." By this time, I was not strong enough to talk. I had to write everything, or whisper.

The anesthesiologist was AMAZING. I was so scared about not being able to breathe, especially with the epidural, in the operating room...and to be awake for it all! So he said he would give me something to knock me out for like 10 seconds, take out the trach, put the ET tube in, get me on the vent, and wake me back up. I was like, okay. This was the worst case scenario that my neurologist had mentioned: delivering by C-section on a vent. I remember when he told me that I was like, nah, that couldn't be me!. Um, right.

However, the anesth. said, "Okay kiddo, your oxygen numbers are great. I'm going to lean you back just a little bit." So he did, and I was okay. After a few minutes, he put me back a little further. And waited....let my body acclimate to that position. He told me my oxygen numbers were still good. I was terrified, but many people were praying for me, and I KNOW God sent this doc to me. He was so awesome...I was at peace the moment I saw him. I immediately trusted him...and I don't trust doctors. I make them earn it, believe me.

So here we are going back bit by bit, and while it was a bit more difficult to breathe, I was doing it, and soon enough I was lying flat enough to have the C-section, NO VENT. This was truly a miracle, folks. Honest to God miracle. There was no natural way I should have been able to breathe lying flat on my back. No way. Except God's way.

I was so excited that I could be awake, and even talk, (well, whisper) during the delivery. Had I been on the vent, talking would have been impossible.

Doug was by my side (And he looked awfully cute in those doctor scrubs!) There were LOTS of people in there....my doctor, several nurses, helpers, more helpers, the docs from the NICU for Jacob, and The Giant.

The Giant was this huge man standing to my right. He was the Pusher. Dr. Lavery made the incision, and the Pusher started up by my breastbone, and started a downward pushing movement to get Jacob out. He was about 6'7", maybe 280. One of the man's hands were larger than my entire head. And he had both of them on my pregnant belly, pushing downward, squishing Jacob out. The entire gurney was moving. The man was HUGE. It didn't hurt at all, it was just this intense pressure. Crazy.

I will NEVER in.my.life. forget the moment they showed Jacob to me. (After they got him to let go of Dr. Lavery's finger with his mouth! He was biting the poor man!!) They lifted up this child. This amazing, wrinkly, pasty, beautiful, perfect, black-curly-haired, chubby cheeked angel and showed me my baby. Oh, that moment. Still brings tears to my eyes. I never EVER dreamed this was even possible, and here we were. I wanted that moment to freeze.

Unfortunately it didn't. Jacob was crying, which was a good sign, and his Apgars were okay, but not great. They whisked him off to the NICU, which I was prepared for, but it still stunk. I made Doug go with the baby while they stitched (rather stapled) me up and brought me to recovery. I was shaking so hard! I remember them telling me it was normal...but it was not fun!

I ended up being in recovery until midnight, because my heartbeat was too fast and they couldn't get it to slow down. I was severly dehydrated, and I drank a LOT...which helped the heartbeat go down, and I could finally go to my room. We had collected Jacob's cord blood at the time of birth to be cryogenically stored, so the box was on the counter waiting for the courier to pick it up. At the time, there were over 40 diseases that cord blood could cure for the person it came from. I'm sure there are even more today.

On the way to my room, they pushed me in my bed through the NICU so I could see my boy... I had only seen him the one peek in the operating room. I put my hand in the incubator (which he was WAY too big for!) and he grabbed my hand. Not tightly, but he kinda grabbed it. He had oxygen on, and a feeding tube in, because he couldn't suck. This was part of neonatal MG. He had it. I knew it right then. They weren't willing to come to that conclusion immediately, but in my heart I knew.

I slept fitfully that night, my arms crying out for the child I had just brought into this world. That, and the nurses coming in to push on my tummy to get my uterus to shrink back. Not so fun. It honestly didn't hurt as bad as I was expecting it to...but maybe I was just preoccupied.

The next day, as soon as I was able, I went to the NICU so I could hold my baby for the first time. I could.not.believe. it. This tiny miracle was MINE. I got to KEEP him! He was perfect. Big chubby cheeks...thick, black curly hair....perfect.

The next few days would tell the story....little did I know that I would be in for the most difficult journey of.my.life.

Wednesday, June 12, 2013

My MG Pregnancy Story Part Three

(reposted)

So it's Saturday night, December 10, 2005, and I just found out I am pregnant. I'm pretty much sitting on the couch, staring at Doug with this silly grin on my face. I'm more excited and happier than I've ever been in my life, yet scared out of my mind at the same time.

Doug says, "Now don't go telling the whole world until we go to the doctor."

Um, right.

Church was the next morning. The first person I see is my friend Kim...she was 6 weeks pregnant with her second child (turned out to be second AND third child, but we didn't know that then). She knew we were trying. She was standing right in front of me as I walked through the door, and I just looked at her, and tipped my head to go into an empty classroom. She just dropped her jaw and said, "NO WAY!!!" She totally knew before I said a word.

I just couldn't keep this ear to ear grin off my face...I didn't even have to tell many people, they just guessed by the way I was acting. People also said that they had never before seen Doug walk so tall.

Ended up that after church a bunch of people were taking the pastor and his wife out for lunch, so most of my church friends were all in one spot. Of course the whole world knew before noon. : ) I couldn't help myself!

Then we called my best friend Linda, and my mom and dad...my sisters, my brother in California...I called the doctor on Monday, and was shocked that they didn't want to see me until January 10, when I would be six weeks along. I assumed they would want to see me right away.

So I went on the 10th, and we heard the heartbeat. Oh.My.Gosh. What an amazing thing. I just could NOT believe it. I also had an ultrasound. They would be doing lots and lots of these, which was awesome, because I got to see the baby grow month by month. I could have done a small baby book just with ultrasound pictures! (We never did get the 3-D one though...too expensive... plus we had SO many regular ones, we felt like we knew what he looked like anyway!)

I had gone off the CellCept in June...I remember going to Bible study once in March, and having 3 showers in April. By the last shower, I could no longer speak clearly. The girls writing down who gave me what couldn't understand a word I said. I was exhausted. From the beginning of April on, I pretty much did nothing but go to the doctor. My favorite uncle was in the hospital, and I only made it up to see him once. He ended up passing away, and I didn't make it to the funeral. I got to the funeral home, but I looked and felt awful. I wished I could have done so much more for my Aunt. I felt horrible. Love you Aunt Dee....Miss you Uncle Gordy!

At my 18 week ultrasound, we found out what we were having....a boy!!! I was SO SO happy. I knew I was only going to do this one time around, and I wanted so badly for Doug to have a boy. YAY! We had names picked out already: Olivia Michelle if it was a girl, and Jacob Douglas (Jacob for Doug's grandpa, and Douglas well, for Doug!). Jacob was VERY cooperative during the ultrasound. Buns up, legs wide open....already an exhibitionist! At the 22 weeks ultrasound, we could see his cheeks! I kid you not! Jacob had the biggest chubby cheeks I had ever seen. Precious!!!

The pregnancy really went amazingly well all things considering. My blood sugar stayed fantastic, my blood pressure was good, and I only gained 17 pounds. THAT was a miracle. I was SURE I would gain 100 at least. Nope. SEVENTEEN. My metabolism went through the roof! My favortie thing to eat was strawberries. I would eat a bowlful a day. I also loved cheese crackers.

I only threw up one time, and that was at 7 months.

We ate mainly venison (before we started raising beef), and I LOVED it. However, while I was pregnant, I couldn't eat it.

Even though my sense of smell was hampered by the trach, I had a bionic nose. Eww. One of my LEAST favorite things about being pregnant.

My biggest fear was that Jacob would be born with transient neonatal myasthenia gravis. Bascially that means he would temporarily have MG until his maternal antibodies went away. We met with a neonatologist, and were told that the chances of Jacob having it were 1 in 7. I went online and looked up whatever I could. The average stay in the NICU for a baby with neonatal MG was about 18 days. This was one of the main reasons I didn't want to try to have my own child. It was terrifying thinking that Jacob would have to deal with what I did, but only being a tiny baby. The only thing that kept me sane was knowing he would fully recover, and never have to deal with it again. I was still scared to death.

We were going to try to have a natural delivery, but I had doubts the whole time about being strong enough to push. I couldn't imagine.

My midwife was extremely conscientious about me, preparing for every possibility. If I DID have to have a C-section, it would be in the main OR, not the labor and delivery ward. I had to get an ET (endo tracheal) tube for my trach, thinking that if I had to have a C-section, they would have to take out my trach, put the ET tube in, blow up the cuff and put me on a vent during the procedure because I couldn't breathe laying flat when I WASN'T pregnant!! That part scared me silly, but there wasn't much I could do about it. Just pray and trust.

Finally August rolled around. I was due the 21st, but we decided to induce on the 14th. We had to be at the hospital at like 6 or 7 in the morning. Ug. The Friday before, at the doctor, they used Cytotek to gradually start things going. I kind of cramped all weekend, went in to the hospital Saturday (the 12th) for another dose, stayed home Sunday, and then checked in to the hospital on Monday.

And then.......

If you missed Part One Click HERE
If you missed Part Two Click HERE

Tuesday, June 11, 2013

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.....

Monday, June 10, 2013

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!!!!

Sunday, June 9, 2013

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.