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.

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!

What A Day!

Yesterday was INSANE.  Saturday was for me too, but yesterday was crazy for both Doug and I.  Poor Jacob never even made it out of his pajamas.

This is what I worked on ALL day Saturday and ALL day yesterday:

My amazing organizer that my amazing hubby made for me.  And while I was capping and uncapping and switching tubes and stacks with numb hands and arms, my wonderful husband cleaned the kitchen and bathroom.  I mean, CLEAN-clean.  Mopped the floors, wiped down the cupboards and base boards and wainscoting in the kitchen.....oh my gosh it looks awesome.

But my arms are still killing me.  My hands hurt, my arms hurt....but it's done!  And it's gorgeous.  It's SO wonderful to just glance up and find the exact thing I need without going through  12 stacks and four drawers and 3 shelves...  I LOVE IT!!!

Now, on to making more jewelry...... Whoo-Hoo!!!

Oh, AND he made the MOST amazing pork roast for supper...  Did I tell you my husband is AWESOME????

Super-Hero Hubby Strikes Again!

Doug has been contemplating storage ideas for my jewelry-making stuff.  I have stacks of bead jars of various sizes and plastic tubs to hold my finished product, and plastic cases with other beads, stones, pendants, etc. 

We've been looking store to store to find "just the right thing."  Well, of course "we" (read: Doug) didn't, so this is what happened:

He comes in with this MAMMOTH work station that hangs on the wall so I have desk space to actually work!  It's AMAZING!  It's 6 feet long, and 2 feet tall.  He started shoving stuff in it and I was like WAIT!!!  There must be ORDER!!!

He designed and drilled out all these perfectly sized holes to fit all the stacks I have. He drew the holes on it first on only had to re-do the bottom row one time.  Everything else he drew perfectly the first time.  I completely don't get how he does that!

And both sides have the perfect size spaces for stacking trays.  This is THE most amazing, perfect thing.  And he just did it to help me.  I love my hubby.  He's really awesome. 

No one is perfect, and sometimes he drives me crazy, but I wouldn't trade him for ANYTHING!!!

My Husband Should Be An Iron Chef

This would be crab and cilantro stuffed chicken breast and wild rice.  Mmm-hmmm.  Just an every night, run of the mill, weekday dinner.

IIIIIIIIII  KNOW!  Is he amazing or what?  I knew he could cook, and that he enjoys it, but this is above and beyond.  In fact, he used to cook for me all the time when we were engaged.  His chicken and wine recipe and twice baked potatoes....Well, that's part of why I married him! That's what I tell him anyway.

But seriously.  This man can COOK.  He could throw down with the best of them.  And I think he'd win!

I'm so blessed to have Doug...he is Daniel Boone meets MacGyver meets Bobby Flay.  I love this man!

My Hubby ROCKS!

Okay, so my birthday wasn't the greatest...MOST of the day.  I didn't feel good, I had to get a chest x-ray (how fun!)...just what every girl wants for her birthday, right?  I wanted to stop at a bakery and just get a little cake for my birthday because I didn't feel like making my own birthday cake. Doug said nothing was open.  I was like, whatever.

Well.  After we got home, Doug and Jacob made me a cake.

And it was perfect.  It was super moist chocolate cake, and he used the peppermint frosting I had gotten on clearance at Christmas.  He hates peppermint. : )  He made little cake pops for himself and Jacob without the peppermint, although Jacob DOES likes the peppermint.

I mean, LOOK at that face.  (He's trying to cover up the "bite" I had taken before I got my camera!)  They were so proud. Jacob wanted to make the heart shape, and they decorated it with snowmen and snowflakes.  And the icing says "Happy" on the top left, "Birth" on the top right, and "Day" at the bottom.  Then the middle says "Love U Mom"... see the U under the heart?  I didn't see it right away, but how precious!

And for dinner, he made me home-grown sirloin steak and snowcrab legs.  He said they just jumped in the cart at the store...Snow crab is the only crab I like... And I LOVE it!  PLUS he made his famous twice-baked potatoes.

And this weekend he's been cleaning the pantry.  He knows it's been driving me crazy, but I can't move everything.  My arms give out.  It's looking AMAZING.  It's absolutely wonderful.

No one is perfect, but MY HUBBY is perfect for ME.

The House...Part Three

I know, I know, you just want to see the finished product. But what's the fun in that?  Isn't the journey the destination anyway?? HA! 

Yes, that's my darling up there, on the ladder, by himself, hanging and nailing on the house wrap because he's completely a wee bit impatient and can't wait on help.  I tell ya what, the noise of a hammer bang bang banging on your house all day long is enough to make you CRAZY.  However, it IS better than SIX hammers.....

Doug really made remarkable progress.... I would go out every so often and look....and go back in, because he always makes me nervous when he's on the ladder!

I know!  Looks like a present, huh?  Oh, and if you look carefully, you can see Jacob's elephant on the front porch, looking to get it.  Yes, he made that himself.  Daddy helped with a few nails, but he designed it and made most of it.

Here's a better look...found a picture of it!  The apple does not fall far from the tree, for sure!

So here is a tiny sneak peak....Tomorrow I will tell you about the AMAZING, wonderful, talented volunteers from Love INC's SKILL Ministry that came to help Doug side the house, and of course, I will have more pictures.

House Repairs Part Two

Eek.

As you can see, the boards under the house are all different shapes and sizes.  We also had a brick chimney column on the front of the house.  We had to move the satellite dish for the TV, and clean up the mess!

Jacob checking out the original siding.

You can see the chimney column here, and the awning over the front door.

Niiiiice!

 

Doug ripped off the awning, and built a frame around the chimney column, then he covered it with plywood so he could wrap it along with the rest of the house.  Up til this point, Doug was doing this by himself.  Made me crazy.  I told him we had help coming, he just had to be patient.  Yeah, right!

The awning is gone, and it won't be back up.  The chimney is covered.... Next time...house wrap!

Twelve Years

Today is my 12th wedding anniversary.  I should say marriage anniversary, because yesterday was my 11 year WEDDING annivesary.  See, I married Doug twice.  We got married on August 26, 2000, 12 days after I had to quit my job because I was too sick to work anymore.  Our ORIGINAL wedding date was February 10, 2001, but for financial reasons, and because we KNEW we were ready, we decided to make it legal sooner.

We called our pastor at the time, a couple of friends, and my mom and dad, and went to the church on that Saturday morning to get hitched.  I remember Doug had to put my hair up because I couldn't hold my arms up.  It was a brief, legal ceremony, and then we went out to lunch.

In September I had lots of tests, and went on oxygen 24/7.  On October 13, 2000, 47 days after Doug and I said "I do," I went into the hospital for an MRI and quit breathing.  On October 17, four days later, I was in a helicopter, intubated, sedated, and on my way to the U of M so they could try to save my life.

Needless to say our original wedding date in February wasn't going to happen.  I remember being in the hospital writing notes to my mom about the wedding...when I was coherent, that's all I could think about.  Everything was planned....

Then MG came and ruined everything.  Except my marriage.

Who would stay with someone who went into the hospital 47 days after they got married to a woman who was now on a vent, not knowing if she would live or die, or even be a vegetable?  Who stays through that? 

Doug did.

Who drives to a hospital 150 miles away every 5 days, (and we had a HORRIBLE winter that year...SO much snow) sleeping in the hospital hotel 3 nights, just to sit by a woman he just married, who didn't even know he was there part of the time?  Who does that?

Doug did.

Who stays with a brand-new wife when she's sleeping on a hospital bed in the living room of their home, and sleeps on the couch to suction her trach during the night because she can't do it for herself?  Who does that, for SIX MONTHS?

Doug did.

Who stays in a marriage when there haven't yet been any "honeymoon" times, or fun celebrations, or spontaneous trips because his wife is too sick to do any of those things?  Who does that?  Who picks a Saturday in August, one day before our first anniversary, to have the big wedding his wife always wanted?  Who?

Doug did.

Who has stayed in sickness and in health, for richer or poorer, MG or not, through weight gain and mood swings, anxiety attacks and irrational behavior?  Who chose to honor his vows when it would have been so much easier to walk away, saying, "I didn't sign up for this!"

Who chose to stay?

Doug did.

And I thank God EVERY day that he did.  My husband is an amazing man.  Part MacGuyver, part Daniel Boone, ALL love. REAL love.  Dedication.  Commitment.  Responsibility.  Faithfulness. Love walked through every day.

My husband has done more for me in the last 12 years than anyone I know could have.  Sure we have our ups and downs, but I would be lost without him.  He IS love in action. 

So Happy 12th Anniversary my dear husband.  You are the backbone of my life.  I couldn't do this without you.  And I'm so thankful I've never had to.  I love you more today than yesterday, but not as much as I'll love you tomorrow.

Super Glue and Super Blasters

So we had a visitation to go to last Monday.  Jacob got to go to see a "REAL" soccer game, because he went to Miss Lori and Mr. Steve's house, and their daughter had a soccer game.  They watched Jacob for us so we could go to the funeral home.  I didn't want to explain the open casket, etc., when he knows that people go to heaven...but then seeing the person in there.....Plus, he's 5 1/2...who needs that much reality at 5??

Anywho...as I posted previously, Jacob was the recipient of a GINORMOUS nerf dart gun.  Well.  The other night, Doug was messing around (as usual....seriously, I have 2 children), and shooting Jacob, and Jacob was shooting back.  I was clear across the room cleaning my trach.  Now, cleaning my trach requires the sticking of Q-tips into the trach tube to clean it out.  Yup.

So I glance up at the shrieking and howling utterances of pure joy from my two boys, and see Doug taking aim at me.  Three words:  "Don't. You. Dare."

Well I might as well have said "fire when ready", because he PULLED THE TRIGGER, and a nerf dart flew 20 feet and nailed me right in the neck.  About 1/2 inch from my trach.  Oh. My. Gosh.  I was ready to bludgeon him.  It left a mark and everything.  Ug.

Then, two days ago I was trying to make this gorgeous necklace by gluing a bead cap/bail on the end of a smoky quartz tumbled rock that we tumbled and polished ourselves...It was going to be SO beautiful.  Well, the first step requires gluing in a headpin to make a loop for the chain to go through so you can make a necklace.  (Think of a very thin long straight pin.) So I put the glue in there, put the headpin in, and all of the sudden, I've got 3 fingers stuck together.  And I mean STUCK.

Doug and Jacob were gone, so it was just me and the dogs.  I couldn't really call anyone for help because I only had one hand....can't hold the phone, dial, talk, etc. with just one hand.  So I used about 1/2 bottle of nail polish remover because I had no idea where the paint thinner was, and I was determined to fix this myself.  Mmmm-hm.

About 30 minutes later, half stoned from acetone fumes, I am finally free from the dreaded headpin and have all my digits, including all their skin!  I still had superglue on my fingertips though (briefly concluded that if I committed a crime that day I wouldn't leave fingerprints....) but there again, like I have the cajones to commit a crime.  I'd probably pee my pants.  Wait, I do that anyway with the MG...

Anywho.  About 17 washes and scrubs with Lava soap and I was mostly glue free.  And so it goes....

What have YOU been up to??

Another Day, Another Doctor

How I wish it was another dollar instead!  I can't seem to shake this stupid cough. So I'm off to the doctor this afternoon. I'm just not feeling the greatest, and I'm supposed to have 2 treatments this week.  I don't want to go.  I don't want to do it again without the port.  Last time sucked so bad.  Ninety minutes to place 2 lines.  Stab, stab, stab. Plus, before each treatment I have an appointment with a different doctor. Nice.

Anyway, you'll all be offering me some cheese to go with my whine in a moment, I'm sure.  I need carpal tunnel surgery.  My hands are so numb and painful in the morning....sometimes for hours. They hurt SO bad....and I sleep with wrist splints on.  I have forever.  But they don't help enough.  I've been diagnosed with it through an EMG (oh, those are SO fun!)...and I've tried the Cortisone shots....which I will NEVER do again.  Talk about pain. HOLY CRAP.  The shots themselves were brutal enough, but them for 24 hours I had the worst hand pain I've ever had in my life.  I cried all night.  It was HORRIBLE.

So I need surgery.  We've met our out of pocket max. for insurance this year, so it would be 100% covered if I can figure out how to get it done before Decemeber 1. 

Then, I still need the port, which will be covered as well.

Saturday I ran a few errands and had lunch with my friend Joanna, and I was just WALKING and hit my big toe with the heel of my other shoe, my cute, summer Birks that I bought in March or April that my feet are FINALLY not too swollen to wear, and the first time I wear them, I BARELY bumped it, and nearly ripped half my toenail off.  Started gushing blood, I'm in the bead store...good grief.  What else.

Could someone please just move in for about a month and manage my life for me?  I'm tired of doing it.  Ain't no letting up either.  Doug hasn't been feeling well for almost a month as well.  And getting him to the doctor is about as easy as getting a vegan to a pig roast.  So that just adds more to me.  Thank God for Auntie Shawn.  Jacob goes there twice a week.

Because I'm supposed to "live a stress-free life."  Um, yah.  Anyone who can show me how to REALISTICALLY do that.....I'll give you a million dollars.  As soon as my money tree starts blooming.

So Much On My Mind

Tina and the kiddos left yesterday, and I can't believe how really sad I am. I got used to having a girlfriend right here to talk to non-stop! And Jacob was having so much fun with the kids. A few scuffles, but much more fun.


We watched American Idol tryouts (don't know from when, they were on the DVR) and the last person we saw was a young man whose fiance was in a horrible car crash 2 months before their wedding. He said, "I was ready to say my vows, to love and to cherish, for richer or poorer, for better or worse, in sickness or in health. What kind of man would I be to walk away now?"


God BLESS you young man. (He could sing too!) THAT is committment and faithfulness. It also reminded me of my husband, and how almost the same thing happened to him. He said the vows FIRST, but then 2 months later I'm on my death bed, literally. And he honored his vows. That is so rare today. So many people think, well, if it doesn't work, we can always get divorced.


Doug and I don't let that even BE a possibility. We simply don't let the "d" word into our vocabulary. Sometimes I get really irritated with him...face it, it's marriage! We ALL get irritated with our spouses.

But really, look at what he has endured. Eleven years of a chronically ill wife. That is NOT easy. And (I know, believe it or not...) I can be a bit difficult at times. Really! It's true! I know you could never believe that from my docile personality....Yes, it IS getting deep in here!

Doug has been an amazing husband over the last 11 years. He has been my best friend, my confidante, my cheerleader, my nurse, my caregiver, my taxi driver, my carrier of medical equipment, my wheelchair pusher, my hand holder, my supporter, and the love of my life.

So. I am looking forward to some new opportunities as well as closing some doors to other things I thought would permanently be part of my life. (THINGS not people). Lots of weird things going on, lots of good things.

Things are finally looking up physically, and more importantly, emotionally. Trying to keep my chin up no matter what....we'll see what happens! I really am a hopeless optimist!

Happy Aniversary!!

Today I am blessed to celebrate nine years of marriage to my wonderful, handsome, God-fearing, supportive, talented husband Doug. So this is for you, honey. I love you with all of my heart, “forever, and ever and always…”

I knew on our very first date that I was going to marry you. You were so “together.” So chivalrous. So intelligent, and funny. So interesting. So mature. So UN-like any other guy I had ever dated. You were a Christian, most importantly of all, and you had a great job and your own home. You knew what you wanted out of life, and weren’t afraid to get it. It seems like so long ago, and at the same time, it seems like yesterday.

I remember coming home from Chicago that weekend with the stuffed blue fish. I remember you later telling me that’s when YOU knew you were going to marry ME. Thank God for stuffed blue fish!

It’s been a journey, hasn’t it? Making the mutual decision that I needed to quit my job because of my health. Going into the hospital 6 weeks after we eloped for a simple MRI and ending up on a helicopter to U of M and not coming out for over a month. Going back to Ann Arbor less than 10 days later, half dead. I was so upset that I wasn’t going to be able to have our big church wedding that coming February like we had planned.

When the doctors told us that I had one of two diseases, neither of which were curable, one of which was degenerative and terminal…I have to be honest with you. I think 80% of men who had been married for the 13 weeks we had been would have cut and run. You certainly didn’t sign up for taking care of an invalid at the ripe old age of 29. You didn’t know I would be disabled, probably for the rest of my life. You didn’t even know at that point if I was going to live. And yet, you just stood by my side, holding my hand, and making me love you more and more every second.

You slept on the couch for six months while I was in the hospital bed in the living room…waking up several times a night to take care of me…to suction my trach, reset my breathing machine. My heart is so full right now I can hardly breathe. You are one of a kind, honey, and I pray I never take that for granted.

The day of our big church wedding one day before our first wedding anniversary was the happiest day of my life. I know we were already married, but I had been so looking forward to the big to-do. The big dress, the flowers, you at the end of that aisle, the big party…the huge celebration of LIFE.

You are the biggest answer to prayer that I have ever seen in my life. Without either of us knowing, God was preparing you for every skill you would need to be my husband… and then some! From decorating my trach band for the wedding so it would match my dress, to rigging up my tube feeding with a fishing pole, to fixing my suction machine with an earring wire in the middle of the night! You are McGuyver and Daniel Boone all rolled into one. Truly my knight in shining armor.

So much has happened since then. Ups and downs, ins and outs. Not knowing from one minute to the next how my health would affect any situation we encountered. You handled it like a champ. You still do. You’re my rock. You keep me sane. You help me hang on to hope when I just don’t want to take another step.

Thank you for putting up with my disease. Thank you for recognizing I am not JUST a disease. Thank you for being a wonderful husband and father. Thank you for loving me just as I am.

I love you so much. I love you more every day, every month, every year that goes by. You are my best friend, and I can’t wait to spend every day of the rest of my life loving you.

Sonnet 116 William Shakespeare

Let me not to the marriage of true minds
Admit impediments. Love is not love
Which alters when it alteration finds,
Or bends with the remover to remove.
O no, it is an ever-fixèd mark
That looks on tempests and is never shaken;
It is the star to every wand'ring bark,
Whose worth's unknown, although his height be taken.
Love's not Time's fool, though rosy lips and cheeks
Within his bending sickle's compass come;
Love alters not with his brief hours and weeks,
But bears it out even to the edge of doom.
If this be error and upon me proved,
I never writ, nor no man ever loved.

Gone Fishin'

Yesterday we went fishing. It was a little chilly sometimes, but a LOT better than last week's blistering 95 degrees and 80% humidity. The fish were biting much better too. Last week I had to stay out on the lake until I caught ONE fish. This week I caught the first one...but JACOB caught the biggest one!

A "loud mouth bass!" It was 2 inches too short so we had to throw it back...I was bummed. BUT, we did catch a BUNCH of really nice bluegill...6-7 inches. Jacob kept "petting" them and picking them up out of the live well. It was hilarious. He's SO 3. He'd be playing with his trucks and smashing Cheerios on the deck one minute, then Daddy would tell him he had a fish on his pole, and he'd drop everything and book over there, all business. He reels the fish in by himself, and then Daddy grabs the landing net to scoop them up. He loves it. He has seen sport fishing on TV, so he pulls his fishing pole way up and then dips it forward and reels like crazy, then puuulllls it back...it's completely hysterical. He's such a ham!