Last Day Of June, But Never The Last Day Of MG

In one of my support groups online we are blessed to have a friend named Cyndi.  Her husband Joe, had MG.  Sadly, I didn't know Cyndi before Joe passed away.  This is Joe's Story in her own words.
Thanks, Cyndi, for sharing this with us!

"On April 26th, 2006, my husband, who was a professional bus driver, was driving his bus on his regular route when suddenly everything became blurry and his vision had become doubled. He called his office to ask that someone come and take over his route. That was the last time he ever drove.
 
The next day his sight was no better, so we went to see our PCP who referred him to his neurologist. At our visit 3 days later, we learned that he had Myasthenia Gravis. We had never heard of this neuromuscular disease. No one in his family had a neuromuscular disease. We would learn over the next five and a half years just how devastating & debilitating this disease was.

I’ll never forget the spirit Joe had throughout the first few yrs. When his first crisis hit 2 weeks after the vision changes, he was rushed to Boston (as our local hospital wasn’t equipped to give him the care or treatment he need) for what would become his second home for those years after he was diagnosed. The morning after he was admitted, I walked into his room and his first words to me were, “I am one of Jerry’s Kids!” Sadly, yes he had become one of Jerry’s Kids. {editorial note:  MG falls under the "umbrella" of the Muscular Dystrophy Association (MDA)}

Over the following months and years, Joe would go through too many crises to count where we thought we would lose him. He would be unable to breathe, talk, eventually unable to walk unassisted. He fell and ended up with a double compound fracture of his lower leg. The disease was winning and destroying his muscles. 

He spent many weeks & months in the hospital or rehab. His spirit was starting to break; he was losing his independence and started needing help with the simplest things that needed to be done around the house.
He had Plasmapheresis treatments several times a year over those five and a half years which kept him alive.
During that time he went from walking unassisted to walking with a cane, then with a walker; he could no longer use stairs (and we had to have a ramp built) then to a power wheel chair last summer. He was no longer able to walk more than a few feet with assistance.
 
Fast forward to last September; Joe went into a major crisis, which he never came out of. By now, he was so weak he could barely talk clearly, breathing was so difficult as his diaphragm was too weak for him to take deep breaths which helps to remove the CO2 from his lungs. Plasmapheresis was no longer helping. Sadly, with the increased CO2 in his lungs, his brain wasn’t getting enough oxygen. Sadly, this led to irreversible brain damage.
 
Joe could no longer do anything for himself. At that time he was moved to a rehab, as sadly we could no longer care for him at home. He could no longer cough; He got aspiration pneumonia, he could no longer breathe without a bipap machine. He was no longer able to feed himself as he had forgotten how to swallow.

We knew then that Myasthenia Gravis had won.
 
Sadly in his last few days he didn’t know who our sons or I were, though God Bless him, he would try to remember our names and became frustrated when he couldn’t. This broke our hearts as we were losing the husband and father that we knew and loved.

On the evening of Nov. 22nd 2011 our sons, family, friends spent their final evening with Joe. Our son and a friend sang his favorite songs to him, during which Joe would look around as if he recognized them. Everyone left that evening knowing that they probably would not see Joe again.

I stayed with him that night--around midnight he slipped into a coma and thankfully & peacefully passed away at 4:40 a.m. on November 23, 2011. He was no longer suffering from this devastating disease called Myasthenia Gravis.

WE NEED TO FIND A CURE BEFORE TOO MANY MORE PEOPLE AND THEIR FAMILIES HAVE TO GO THROUGH WHAT JOE AND OUR FAMILY ENDURED FOR OVER 5 YEARS."

Couldn't have said it better myself.  Today is the last day of National Myasthenia Gravis Awareness Month.  But until we have a cure, there will never be a "last day" for Myasthenia Gravis.

www.myasthenia.org
 

Never

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

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

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

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

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

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

I just want to GO.

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

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

I will not.

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

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

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

Stress And MG

So yesterday was horrible.  First stressor of the day:  my husband comes home from work with a certified letter from a doctor he saw last October.  It contained a letter and an order for a follow-up chest x-ray for the nodule in his lung.  I was like WHAT?!?!?!?  I FREAKED all over him.  I told him he IS going for that x-ray, and he WILL promise me and get it done...

He was all nonchalant...I was like, after everything with my dad (lung cancer twice) you're not going to take this seriously???  And I'm bawling all over him.  Yah.

So my second stressor was the a-hole farmer next door.  The guy that owns the land next to us leased it to a farmer.  Well.  I didn't think it would be that bad.  What was I thinking???  Not like I had a choice, but holy crap!  It's so dusty and dry...AND he's spreading manure on it.  NICE.  This whole "living-on-a-farm" thing is going a little too far. 

Then Doug comes in and says that there's junk from the 10 acres next door on OUR property.  Barbed wire, trees, stumps, dirt, etc.  AND he's been turning his big ass equipment around in our back field, where we have little pine trees planted.  PLUS, there's manure running off onto OUR property, into our one of our little "swamps" that is ALSO a drainage ditch.  Can you say, hello DEQ???

So I call the farmer's business.  Voicemail.  Called his house.  Talked to his wife (she sounded like she could give a flip) and said she'd call her husband, after I told her to have him call me.  So we also called the landowner (who is a really nice guy, and obviously this is not his fault) to let him know as well. 

THEN, (this is 8:30 at night) this big ass farm equipment is back on the property.  The landowner had given Doug the farmer's cell phone number, so I called him to tell him about the problems.  I said, "In fact, there's someone there right now."  He says, "Yup, that's me.  If you got something to say, come and find me."  And he HUNG. UP. ON. ME.

WHO does that???  Seriously???  I was SO pissed.  I could feel my heart pounding...if I had been physically able, I would have walked my butt out there and given him the what for.  What a jerk.  Jackwagon.

Yeah...we'll see.  He said he'd get it cleaned up today...he better, or we will just have to call the police, the DNR, and the DEQ.  I've got way too much stress in my life already than to deal with this doorknob.

Then, the final straw:  Molly went back to the vet yesterday to get her staples and stitches out.  When I picked her up from the vet LAST Monday, I was a little irritated because they gave me NO instruction other than "keep it dry, and bring her back in 7 days to get the stitches out.)  So Doug brought her in yesterday afternoon (7 days later) to get them out.  It started "weeping" a little (sorry if this grosses you out), so I called the vet, and they said that's normal...if it gets worse call back.

Well, about 9:40PM, just after we ate SUPPER (yes, at almost 10 at night)  Doug grabs Molly to look at her boo-boo, and the incision had OPENED UP.  There was a 2" long, 1/2" deep WOUND on my little Molly's side.  I was BEYOND upset.  I called the vet, and got a message to call the new vet on his cell.  So I did, and he sounded SO like he didn't give a crap, and he wasn't going to come in and fix it tonight.  He's like, when did I do the surgery?  I'm like, "Last Monday."  He's like, "Oh really."  I'm like, "Yes, and they told me to bring her back in 7 days.  How long should it have been?"  He's like "10-14.  It should have been on your paperwork and receipt."  Um, NOPE.  Now, in his defense, this guy is a GREAT vet, and he's VERY laid back. But I was MAD.  He told us to put an ace bandage around her.  I'm like, should we put anitbiotic ointment on it?  He said, "yeah."

So this morning at 8AM, the second they opened, Doug's at the door waiting.  The vet saw Molly's boo-boo and was PISSED.  The main vet should NOT have taken the staples and stitches out without asking when they were put in.  He was also pissed at the person who told me 7 days, AND pissed that there were no instructions given.  I'm like, you and me both, buddy.

I sent Doug in with all the paperwork they gave me, and wrote right on there, "I was given NO instruction on how to deal with Molly except to keep the incision dry, and to come back in 7 days."  So he re-sutured and re-stapled her (treated the wound first), gave us anti-biotics and other medicine we have to put IN the wound tract (um yeah, Doug will be doing that) twice a day, for FREE.  Good thing, because if I had to pay more...I swear, if anything happens to my little Molly....I've had her for 11 years....SOMEONE will pay.

So yeah.  That's enough rambling, but that was all in one day.  Add to that all the every day stressors of life:  marriage, raising a child, taking care of dogs, bills, appointments, AND add MG and medications and refills and doctors and all that crap....And you get a blob of non-functioning human being.

Is This How Caregivers Feel?

I always tell people I'm glad I'm the sick one.  When I had to watch my baby boy struggle to breath and be intubated, have an IV in his tiny little forehead... It was hell.  Truly.  I can't HANDLE seeing people I love hurt.  It breaks my heart.

Ever since I can remember, I've always been a hyper-compassionate person.  I remember once my cousin was being disciplined and I was the one crying...for him. I see a person on the street, in need, and my heart just breaks for them.  I think of all the people in prison who are trying desperately to change but have NO support, and it breaks my heart.

I wonder if sometimes that's how our caregivers feel.  My husband is so stoic.  But on the inside...I wonder.

These are the lyrics to a song called "Permanent" by David Cook.  If you are an American Idol fan you will recognize the name.  His brother had cancer in his brain, and he died from it.  I think it was his younger brother, but I am not sure.

I was a fan of David Cook from the audition phase, and think he's an incredible artist.  If you've never heard this song, I would highly suggest finding it on youtube or something and listening.  It's haunting.  It's beautiful.

Permanent by David Cook

Is this the moment where I look you in the eye?
Forgive my broken promise that you'll never see me cry.
And everything, it will surely change
Even if I tell you I won't go away today

Will you think that you're all alone
When no one's there to hold your hand?
When all you know seems so far away
And everything is temporary, rest your head
I'm permanent

I know he's living in hell every single day
And so I ask, oh God is there some way for me to take his place?
And when they say it's all touch and go
I wish I could make it go away but still you say

Will you think that you're all alone
When no one's there to hold your hand?
When all you know seems so far away
And everything is temporary, rest your head
I'm permanent, I'm permanent

Is this the moment where I look you in the eye?
Forgive my promise that you'll never see me cry

[ From : http://www.elyrics.net/read/d/david-cook-lyrics/permanent-lyrics.html ]

Ode To Chronic Illness

One thing I know that really took me by surprise were ALL of the limitations and disappointments MG has brought to me. And all the things that it has taken.  I wrote this a while back, but it's a good reminder for those "healthy" ones out there... LOL!  But seriously, as we near the end of National Myasthenia Gravis Awareness Month, the LAST thing I want is for people to forget.

The month will be over, but the disease will remain.

Ode To Chronic Illness
By Kerri Sweeris

O illness of mine which has torn me asunder,
I hate you as much as the weather I'm under.
You rob me of joy and of life and of breath.
And of you, chronic illness, I am sick to death!

Chronic illness is what I would not dare send
To kith or to kin, rotten enemy or friend.
It breaks and it weakens and hurts you some more
Til you rail against heaven and stomp on the floor.

This illness I have has cost more that I thought.
Friendships, relationships, more pain than it ought.
One thing rings true when you have something chronic.
You aren't going to fix it with gin or with tonic.

You can't fight your battles, though many they are,
You can't walk or see straight, you can't drive the car.
People will judge you for gluttony and sloth
(Unless you fall down, seize, and at the mouth froth).

I'm so sick of hearing, "But you look so good!"
This illness does things that no illness should.
I may look okay when at me you first glance,
But give me an hour and I may pee my pants!

Incontinence is only one "joy" in my life.
There's double vision, weakness, worry and strife.
Don't forget isolation, boring and lonely,
Even from one who is the one and the only....

Fill in the blank, be it family or spouse;
All I know is I'm often alone in this house.
Some people may last for a month maybe more,
But soon their own lives knock back on their door.

So for us who are chronically, totally ill,
We wait and we wait for that one magic pill.
The one that will take us to where we've been wishin'
That oh-so-desired, elusive remission.

Remember for now that if you see someone odd
They may be that way by allowance of God.
They may have some reasons they can't "this or that"
And it's not 'cause they're lazy, insolent or fat.

O illness, my illness, your death I desire
I want to be free again, free to admire
The outdoors, and swimming pools and even bee stings.
I want to be OUTSIDE to hear when birds sing.

I will never give up this fight I am in
And you, blasted illness, you will NEVER win.
I am strong, (and I'm funny) I also have class.
So you chronic illness, can kiss my sweet (BEEP).

Cheap Eyeglasses...(And They're CUTE!)

Okay, a lot of people wear glasses, right?  And they pay through the nose for them.  I am very fortunate to have vision coverage, otherwise I'd be in big trouble.

My cousin Karen (yes, the same Karen that is part of the 3-K's!) told me about Zenni Optical a long time ago.  It kind of slipped my mind.  Then is came up again, and so I'm blogging about it.  Karen has a flair for style, and always looks great.  She's always got killer jewelry on (and no, it's not mine), her hair is always fashionable, and she always has REALLY cute glasses!

So one day I asked her where she gets her frames, and she says, "Zenni Optical."  I'm like, where in the world is that?  So she tells me it's an online thing, and she got an ENTIRE pair of prescription glasses, frames AND lenses, for $29.00.  I was like, SHUT up.  There's no way!  But seriously...check out the link above.  They DO have super cute glasses...modern, fun, colorful....for CHEAP.

Not only that, but they come with anti-scratch coating, a case, a microfiber cleaning cloth, and UV protection FREE!  I am serious.  If you wear glasses, especially if they are just plain, single vision, you can get CUTE glasses VERY cheap.

This is a sponsored post

Ode To Prednisone

Oh Prednisone, my Prednisone,
I hate you with a passion.
You make me scream and cry and yell,
And you do NOTHING for my fashion.

Oh Prednisone, my Prednisone,
For those who do not understand,
Imagine seeing red one minute
Then bawling to beat the band.

Oh Prednisone, my Prednisone
Whose effects turn faces to moons,
And makes you feel so hungry
You could eat a raw racoon.

Oh Prednisone, my Prednisone
I can't wait til you are gone
Then I will have nothing else
To blame my bad moods on!

Oh Prednisone, my Prednisone
The emotion you evoke.
Sometimes I get so worked up
I think I'll have a stroke!

Oh Prednisone, my prednisone
The mood swings you impart.
Laughing, crying, maddening!
Hot flashes even start.

Oh Prednisone, my prednisone
I cannot live without you...
At least right now, but VERY SOON
With you I will be through.

Oh Prednisone, my prednisone,
It's such a love/hate thing.
Love because you saved my life,
Hate for ruining everything.

Oh Prednisone, my prednisone,
With weight gain and double chin,
I proudly say to you, you beast,
That eventually I WILL WIN!!!!

Reposted from September, 2009

900

Please go through all the way to the end....thanks.

Cindy  Cyndi  Linda  Inna  Annie  Angela  Karen  Kerri  Kerry  Marsha  Adrienne  Nancy  Steven  Julie  Brittany  Lisa  Jen  Jennifer  Elizabeth  Yas  Sedef  Donlyn  Seth  Christine  Angie  Annette  Donni Lee  Robin  Stan  Val  Jinny  Bette  Loretta  Jo-Ann  Lorraine  Louise  Beth  Sue  Ashley  Shae  Heidi  Katherine  Cathy  Sandy  Laura  Debbie  Lewis  Dianne  Janine  Kristy  Sandee  Miriam  Susan  Bob  Kourtney  Joe  Deborah  Christine  Angela  Cindy  Erin  Deni  Rachel  Sandi  Becky  Ron   Evelyn  Lisa  Tasha  Bridget  Lisa  Alice  Andrea  Christy  Sandy  Rita  Suzanne  Sarah  Sam  Sheila  Maddy  Venessa Sue  Kathy  Rachel   Beth  Kimberly  Tom  Sally  Marion  Kelly  Sandy  Jill  Saysha   Beverly   Beate   Becky  Darlene  Jim  Ashley  Allen  Sharon  Robin  Joy  Kimberly  Megan  Jessica  Sharry  Maria   Stephanie  Kate  KJ   Serita  Janelle  Marion  Jenny  Terry  Pernille  Penny  Brad  Kristyn   Ryan  Trisha  Mitzie  Trisha  Carol  LaVonna  Crystal  Michael  Ray  Aubrey  Cindy  Garry  Donna  Nancy  Debbie Stanly  Michelle  Kimberly  Jim  Connie  Donnie  Jeff  Linda  Jan  Moshe  Mayele  Jana  Kathy Lynn  Terry  Jan  Missy  Trish  Laveta  Lanesha  Nekeita  Barbara  Billie Mae  Sill  Kathleen   Marcia   Sheryl  Katie  June  Lori  Robin  Melissa  Connie  Janet  Howard  Barb  Norma  Jill  Aneta  Heather  Donna  Bob  Kenneth  Joann  Larry  Jen  Cheri  Marcie  Dorothy  Angela  Terry  Connie  Barb   Mary Jane   Hamadi  Marilyn  Kathleen  Mary Shymaa  Nancy  Margaret  Sandy  Dave  Vickie  Lisa  Brian  Chrissy  Susan  Lucy  Lori   Niki  Brandy  Brandie  Maryanne  Gail  Tami  Myrna  Phylis  Priscilla  Kaoni  Jennifer  Sharon  Allan  Donna  Kristen  Claire  Phillip  Mihaela  Kitty  Mike  Shari  Linda  Trisha  Helen  Bruce Hillary  Julia  Jo  Tracy  Osa  Amouli  Judy  Joan  Brad Amy  Pamela  Janis  Joy  Sharon  Shantel   Nadjet  Sandy  Debbie  Maria  Robert  Bunda  Rachelle  BJ  Frank  Kimberly  Anna  Brenda  Cindy  Brian  Eddy  Arissa  Riska  Nelson  Allison  Sandra  Roberta  Monique  Kristen  Jamie  Sara  Carolina  Daniel  Pat  Mareesa  Arlene  Nancy  Beverly  Sabra  Linda  Kate  Kelsey  Freida  Maureen  Kate  Arnold Veronica  Martina  Joanne  Maryna  Zorica  Doris  Connie  Sherry  Nicole  Chandinii   Brenda  Robin  Anna  Kate  Stephanie 
Cindy  Cyndi  Linda  Inna  Annie  Angela  Karen  Kerri  Kerry  Marsha  Adrienne  Nancy  Steven  Julie  Brittany  Lisa  Jen  Jennifer  Elizabeth  Yas  Sedef  Donlyn  Seth  Christine  Angie  Annette  Donni Lee  Robin  Stan  Val  Jinny  Bette  Loretta  Jo-Ann  Lorraine  Louise  Beth  Sue  Ashley  Shae  Heidi  Katherine  Cathy  Sandy  Laura  Debbie  Lewis  Dianne  Janine  Kristy  Sandee  Miriam  Susan  Bob  Kourtney  Joe  Deborah  Christine  Angela  Cindy  Erin  Deni  Rachel  Sandi  Becky  Ron   Evelyn  Lisa  Tasha  Bridget  Lisa  Alice  Andrea  Christy  Sandy  Rita  Suzanne  Sarah  Sam  Sheila  Maddy  Venessa Sue  Kathy  Rachel   Beth  Kimberly  Tom  Sally  Marion  Kelly  Sandy  Jill  Saysha   Beverly   Beate   Becky  Darlene  Jim  Ashley  Allen  Sharon  Robin  Joy  Kimberly  Megan  Jessica  Sharry  Maria   Stephanie  Kate  KJ   Serita  Janelle  Marion  Jenny  Terry  Pernille  Penny  Brad  Kristyn   Ryan  Trisha  Mitzie  Trisha  Carol  LaVonna  Crystal  Michael  Ray  Aubrey  Cindy  Garry  Donna  Nancy  Debbie Stanly  Michelle  Kimberly  Jim  Connie  Donnie  Jeff  Linda  Jan  Moshe  Mayele  Jana  Kathy Lynn  Terry  Jan  Missy  Trish  Laveta  Lanesha  Nekeita  Barbara  Billie Mae  Sill  Kathleen   Marcia   Sheryl  Katie  June  Lori  Robin  Melissa  Connie  Janet  Howard  Barb  Norma  Jill  Aneta  Heather  Donna  Bob  Kenneth  Joann  Larry  Jen  Cheri  Marcie  Dorothy  Angela  Terry  Connie  Barb   Mary Jane   Hamadi  Marilyn  Kathleen  Mary Shymaa  Nancy  Margaret  Sandy  Dave  Vickie  Lisa  Brian  Chrissy  Susan  Lucy  Lori   Niki  Brandy  Brandie  Maryanne  Gail  Tami  Myrna  Phylis  Priscilla  Kaoni  Jennifer  Sharon  Allan  Donna  Kristen  Claire  Phillip  Mihaela  Kitty  Mike  Shari  Linda  Trisha  Helen  Bruce Hillary  Julia  Jo  Tracy  Osa  Amouli  Judy  Joan  Brad Amy  Pamela  Janis  Joy  Sharon  Shantel   Nadjet  Sandy  Debbie  Maria  Robert  Bunda  Rachelle  BJ  Frank  Kimberly  Anna  Brenda  Cindy  Brian  Eddy  Arissa  Riska  Nelson  Allison  Sandra  Roberta  Monique  Kristen  Jamie  Sara  Carolina  Daniel  Pat  Mareesa  Arlene  Nancy  Beverly  Sabra  Linda  Kate  Kelsey  Freida  Maureen  Kate  Arnold Veronica  Martina  Joanne  Maryna  Zorica  Doris  Connie  Sherry  Nicole  Chandinii   Brenda  Robin  Anna  Kate  Stephanie  Cindy  Cyndi  Linda  Inna  Annie  Angela  Karen  Kerri  Kerry  Marsha  Adrienne  Nancy  Steven  Julie  Brittany  Lisa  Jen  Jennifer  Elizabeth  Yas  Sedef  Donlyn  Seth  Christine  Angie  Annette  Donni Lee  Robin  Stan  Val  Jinny  Bette  Loretta  Jo-Ann  Lorraine  Louise  Beth  Sue  Ashley  Shae  Heidi  Katherine  Cathy  Sandy  Laura  Debbie  Lewis  Dianne  Janine  Kristy  Sandee  Miriam  Susan  Bob  Kourtney  Joe  Deborah  Christine  Angela  Cindy  Erin  Deni  Rachel  Sandi  Becky  Ron   Evelyn  Lisa  Tasha  Bridget  Lisa  Alice  Andrea  Christy  Sandy  Rita  Suzanne  Sarah  Sam  Sheila  Maddy  Venessa Sue  Kathy  Rachel   Beth  Kimberly  Tom  Sally  Marion  Kelly  Sandy  Jill  Saysha   Beverly   Beate   Becky  Darlene  Jim  Ashley  Allen  Sharon  Robin  Joy  Kimberly  Megan  Jessica  Sharry  Maria   Stephanie  Kate  KJ   Serita  Janelle  Marion  Jenny  Terry  Pernille  Penny  Brad  Kristyn   Ryan  Trisha  Mitzie  Trisha  Carol  LaVonna  Crystal  Michael  Ray  Aubrey  Cindy  Garry  Donna  Nancy  Debbie Stanly  Michelle  Kimberly  Jim  Connie  Donnie  Jeff  Linda  Jan  Moshe  Mayele  Jana  Kathy Lynn  Terry  Jan  Missy  Trish  Laveta  Lanesha  Nekeita  Barbara  Billie Mae  Sill  Kathleen   Marcia   Sheryl  Katie  June  Lori  Robin  Melissa  Connie  Janet  Howard  Barb  Norma  Jill  Aneta  Heather  Donna  Bob  Kenneth  Joann  Larry  Jen  Cheri  Marcie  Dorothy  Angela  Terry  Connie  Barb   Mary Jane   Hamadi  Marilyn  Kathleen  Mary Shymaa  Nancy  Margaret  Sandy  Dave  Vickie  Lisa  Brian  Chrissy  Susan  Lucy  Lori   Niki  Brandy  Brandie  Maryanne  Gail  Tami  Myrna  Phylis  Priscilla  Kaoni  Jennifer  Sharon  Allan  Donna  Kristen  Claire  Phillip  Mihaela  Kitty  Mike  Shari  Linda  Trisha  Helen  Bruce Hillary  Julia  Jo  Tracy  Osa  Amouli  Judy  Joan  Brad Amy  Pamela  Janis  Joy  Sharon  Shantel   Nadjet  Sandy  Debbie  Maria  Robert  Bunda  Rachelle  BJ  Frank  Kimberly  Anna  Brenda  Cindy  Brian  Eddy  Arissa  Riska  Nelson  Allison  Sandra  Roberta  Monique  Kristen  Jamie  Sara  Carolina  Daniel  Pat  Mareesa  Arlene  Nancy  Beverly  Sabra  Linda  Kate  Kelsey  Freida  Maureen  Kate  Arnold Veronica  Martina  Joanne  Maryna  Zorica  Doris  Connie  Sherry  Nicole  Chandinii   Brenda  Robin  Anna  Kate  Stephanie 

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

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

Devotion: When You Cannot Meet Everyone’s Expectations of You

This wonderful article was written by Karlton Douglas. It was posted on the Rest Ministries website (www.restministires.com) and is used with the author's permission.

 About the Author:  Karlton lives in Ohio with his lovely wife. Affliction has led to many failed expectations, but the Lord delivers him from them all.

“When she saw her hope unfulfilled, her expectation gone, she took another of her cubs and made him a strong lion.” (Ezekiel 19:5)

 

In the expectations game everyone loses when it comes to living with an illness. We can become discouraged and depressed when we find our hopes dashed, when we have a few “good days” and expect them to last, only to be knocked flat again by affliction a short time later.

Expectations can create all sorts of problems between spouses and friends and family. We say we will do something, or make plans ahead of time to go to some event, only to have our hopes dashed and the injury multiplied by disappointing those close to us. And the situation is not improved by those who have little understanding or willingness to accept such disappointment.

We cannot control the reactions of others. If grown people act like immature children because the stars do not always align perfectly for them, there is little we can do about it. If people have short memories, forgetting the good days God has blessed them with, and are only willing to focus on disappointments, we can’t make them broaden their vision to see the entire picture, one with blessings and disappointments–it’s called life.

The rain often follows sunny days, the seasons of life and the seasons of our illness change. It is wonderful to see the sun shining after so many rainy days, and how wonderful it is when the Lord blesses us with improvements in our circumstances after a difficult period. But though we may try to see and accept these situations philosophically, others may ignore the good things and only focus on the half-empty glass in front of them.

It can be painful when friends and family turn away from us because of our afflictions. It is astounding that when we need friends and family the most they can shun us, react with anger, resentment, childishness, just as we are already under the pressure of flaring illness and pain. I think this may be the worst thing about illness, worse than the pain and suffering of the illness itself.

One angry person is “mad.” Two angry people is “madness.”

I have often found that a very challenging part of my illness is not to return anger for anger. When my illness crushes expectations in others, and they react with anger, it can be a herculean task not to lash right back with my own anger and frustration. After all, I not only have the worsening illness to deal with and its disappointment, but also a “two-year-old” adult who is taking their anger out on me on top of everything else. I suspect I’m not alone in facing the madness of disappointed expectations.

I have learned over the years to take my frustrations and disappointments to God. Occasionally it may help to discuss how I’m feeling with others, but when the others are part of my frustration, it can very much be like reasoning with two-year-olds. Some people, despite their age, are not very mature, and you cannot reason with such people. The best you can do is pray that the Lord will help these people to wise up, grow up, and that God will give you the strength and patience to deal with such people as best you can.

It is very sad that on top of the weight of affliction and illness the afflicted must also deal with unmet expectations of others. Sometimes we must face our own frustrations over the bad turn of circumstances, but by far the hardest thing is to deal with the frustrations others thrust at us because we do not meet their unreasonable expectations. Sometimes I almost feel that I should wear the following sign:

I am someone living with an illness.
I will, to the best of my ability, try to live up to your expectations, but sometimes I will not meet them.
Because, as the first line says: I am someone living with an illness.

Prayer: Dear Lord, frustrations abound in our lives because of afflictions, and disappointment, especially coming from others, is very hard to bear. Help us, Lord, to be patient in affliction. Amen.

Father's Day Letters

Dear Dad,

Growing up is hard.  Even at 41, you're still my Daddy.  Of course, being the baby of the family doesn't hurt either.  I know we butted heads sometimes when I was younger (no, really!), but I sure appreciate all the work that you did so I could have all of the things that I had.  A private education kindergarten through college.... Who gets that?  Parents who have been married for 54 years!  Who gets that??  I know there were probably times that you were ready to rip your hair out.... especially with 4 daughters and one bathroom!

My favorite memory is sitting on your lap in your chair when I was about 4 years old.  I thought you hung the moon.  (Even though I know now that God did, sometimes I still do....)

I think what I love most about you is that under the gruff exterior, you have the biggest heart.  Remember when I brought that idiot home and asked if he could sleep in the garage?  You gave me money to pay for a hotel room for him because you didn't want him to sleep in the street. (Although he probably deserved it.)   You always gave people a chance, or two, or three....even when they didn't deserve it.  You exemplified grace and now I see it so clearly.

And somehow, even though I never went with you or anything, your heart for Prison Ministry was passed along to me.  You demonstrated what it means to remember "the least of these."  And that is so very important to me, especially now.  Thank you for always being there, even when I was a belligerent kid with a mouth that wouldn't stop.  I love you and appreciate you and thank God you are my dad.

Forever your Little Girl,
#5


Dear Douglas,

It's crazy how life works out.  Six weeks after we get married I end up in the hospital, and you stayed.  You could have walked away.  But you made a commitment. You took a vow, an oath before God, and you kept it.  God will honor you for that.

I remember wanting to adopt so badly, but you wanted a biological child.  I couldn't see what the big deal was, because I could love any child!  But you knew.  God knew.  We had to go through everything we did to have our Jacob.  And what would I do without him?  He is crazy brilliant, and so, so clever, just like his Daddy.

Have you seen the way he looks at you?  His world revolves around you.  Sure, he loves his Momma, but YOU....you can do no wrong.  He wants to do what you do, be where you are, and grow up to be just like you.  And I pray to God he does.

Thank you for being the man, the husband, and the father that you are.  I love you with all of my being.
Sweet Pea.

Why Remembering Is Important

This June, I have been really hitting the MG Awareness thing HARD.  I think about it every day, I've been trying to post {nearly} every day, and I'm SO PROUD of all my MG friends and how they are spreading awareness as well.

Yesterday I posted part of my story...  I've been doing a lot of remembering these past few weeks:

In September of 2000 I was so ill. I could not walk more than 10 feet without resting. My skin was yellow. My face was void of any emotion. I couldn't breathe, I could sleep, I had panic attacks all the time.  My brain was so deprived of oxygen (from MG muscle weakness that had been ignored undiagnosed for 5 years), and the carbon dioxide levels in my blood were so high, there is no medical reason I should have survived. My aunt is a nurse, and she came right out and said, there is "no way, other than a miracle, that you were ALIVE at that point, let alone functional."

And that was the first of many miracles. While I do have SOME memory issues and I don't feel quite as sharp as I used to be, I don't have ANY real brain damage from all that lack of oxygen. Then in the hospital I got staph (MRSA) pneumonia...the list goes on and on.

While it is difficult to relive the painful parts of my past, I've been thinking all day about the following Scripture passage:

"Now the Jordan is at flood stage all...during harvest. Yet as soon as the priests who carried the ark reached the Jordan and their feet touched the water's edge,the water from upstream stopped flowing....while the water flowing down...was completely cut off.

So the people crossed over opposite Jericho. The priests who carried the ark of the covenant of the Lord stood firm on dry ground in the middle of the Jordan, while all Israel passed by until the whole nation had completed the crossing on dry ground. When the whole nation had finished crossing the Jordan, the Lord said to Joshua, "Choose twelve men from among the people, one from each tribe, and tell them to take up twelve stones from the middle of the Jordan from right where the priests stood and to carry them over with you and put them down at the place where you stay tonight"....

Joshua...said to them...'each of you is to take up a stone on his shoulder, according to the number of the tribes of the Israelites, to serve as a sign among you. In the future, when your children ask you, 'What do these stones mean?' tell them that the flow of the Jordan was cut off before the ark of the covenant of the Lord. When it crossed over the Jordan, the waters of the Jordan were cut off. These stones are to be a memorial to the people of Israel forever.'"
Joshua 3:15-4:7

I NEED to remember the bad, scary times. That is a HUGE part of my testimony! God didn't tell Joshua to have them take stones from one side of the Jordan or the other, He told them to take the stones from the middle of the Jordan. From the exact place where God had performed the miracle that saved their lives, again (they had already crossed the Red Sea on dry ground). 

In a way, my trach is my pile of rocks. People see me today and don't really understand how I ever could have been that sick. But then they see the trach, and ask.... Other than my husband, family, and a few friends (and my old friends on facebook!) very few people in my life NOW know what I have been through. 

We have to talk (or in this case write) about the things God has done in our lives, or how will anyone know what He has done? I mean, people can read the Bible and learn about God, all the things He's done and the miracles Jesus performed, but NOTHING speaks to the power of God more than a personal story. 

Some folks don't think that God still does miracles today...I would like to challenge that theory, as I am living proof He does!  Some think the Bible is a nice story, even a good history book, but don't REALLY understand that God is alive TODAY!

We MUST remember. We cannot forget.  It happened for a REASON.  And that reason might just be the next person that comes into your life.  How we live with bad circumstances screams louder than anything we may say. 

My Story

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. 

MG is a disease to which you are "genetically predisposed."  What the heck, right?  It's NOT hereditary (unless it's congenital MG, which is a whole different ballgame).  I liken it to having electricity in your house... The potential for light is there, but you need to flip the switch.  IF you never flip the switch, no light.  Same with MG:  MY "switch" was getting my tonsils out.  All those antibodies that had been fighting my tonsils had nowhere to go.  So they attacked me.

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. More than one told me it was all in my head (that I was crazy).

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, 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. No one knew if 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 intercostals 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 muscle 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 6 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) neo-natal MG. He was on a vent for 3 weeks, and in the NICU for a total of 5 weeks. 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 get plasmapheresis 3 times in a week every 6-8 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.

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 Myasthnia Gravis research, you can check out the Myasthenia Gravis Foundation of America website at www.myasthenia.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.

What You May Not Know About MG

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

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

There is no cure for MG.

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

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

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

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

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

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

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

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

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

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

Question

This amazing post is brought to you by Felicia Parker, mom to Seth, who is 16 and has MG.  He recently had a thymectomy (removal of the thymus gland) because of his MG.  June is National Myasthenia Gravis Awarenss Month, and Felicia is doing an AMAZING job of spreading the word.

I couldn't copy the graphics because the picture would have been to small to read, but here are the words:

Question

What if you wanted your eyes to open, but they couldn't?

What if one or both of them would only open a little,

no matter how hard you tried?

What if everything you saw was double, or blurry?

What if you were hungry, but chewing became difficult,

or you choked on your food because you couldn't swallow?

What if you wanted your hand to open,

or your legs to walk,

or your body to hold you up and it just wouldn't?

What if your speech became slurry, 

and people thought you were drunk or on drugs,

when you're not.

What if it didn't happen all the time,

but when you least expect it?

Would you go to the doctor's?

What if your doctor didn't know what was wrong with you?

Would you go to another one and another and so on and so forth...

What if a neurologist said, "You have Myasthenia Gravis."?

What would you do if you, or your son, or daughter,

or your mother or your father 

were diagnosed with a rare, neuromuscular, autoimmune disease

that no one has ever heard of, and was completely incurable?

What would you do?

JUNE IS MYASTHENIA GRAVIS AWARENESS MONTH

Thank you Felicia, for letting me share this!!

MG Walk Grand Rapids!!

June 9, 2012

I finally met Jen, another MG'er who lives in Grand Rapids!

AND I met another MG friend Brandie!

Letting go of the balloons.

Me, after the walk, and I didn't even walk!  Oh, lovely MG.

Please Watch This: MG Awareness

http://www.youtube.com/watch?v=Se0febG4Pd0&feature=plcp

I know I've posted this before, but June is National MG Awareness Month, as you know, so I'm reposting, and asking everyone to share this link with everyone you can.  Ask your friends to do the same. Knowledge is the first step to a cure.  Thanks so much!

SERIOUSLY???

Okay.  So it starts yesterday morning.  I was supposed to get my third pheresis treatment.

Um, or not.  {Before I continue, I must say, I had a TERRIFIC person in charge of needle patrol, so it wasn't her.}  FIVE. UNSUCCESSFUL. POKES.  With a needle the size of a fork tine.  Yah.  Literally.  FIVE.  That's like a record for me...normally I'm like 3, and then I get to poke THEM. : )  But I've been getting this for 11 years through my veins.  They seem to be okay with two treatments, but the third one is too much.  I'm gonna have to just stick with 2 and get them more frequently if necessary.  My left arm (which got all the pokes) looks like a bunch of smashed grapes.

THEN, I had an appointment with my pulmonologist.  Now, I ADORE my Pulmonologist.   He is THE best doctor on the planet.  (Dr. Lovy at St. Mary's).  He has helped me SO SO SO much in the past year or so that I've been seeing him.  SO much.

Well, he's leaving.  His wife just had son number 3, and I totally get it.  He kept apologizing (probably because I couldn't stop bawling), and I'm like, that's life.  It happens.  But he was really special.  He really cared about ME, ALL of me, not just my lungs.  My previous pulmonologist (whom I saw ONCE) told me, "Well, you have a neuromuscular disease, you'll always be dealing with atelectisis (closure of the bottom of the lungs), that's just the way it is.  There's nothing you can do about it."

Dr. Lovy was like, WHAT??? He got me a vent, The Vest, and a cough assist.

Speaking of cough assist, I got my response from the appeal of the appeal for my cough assist machine.  Their decision was "unfavorable."  UN-FREAKING-REAL!  I spent HOURS on my appeal.  HOURS.  And all they base it on is the diagnosis code.  MG only has one diagnosis code, even though there are many types of MG.  For example, there is generalized MG, MuSK+ MG, AChR+ MG, congenital MG, ocular MG....and ONE diagnosis code.

So they denied me because I didn't have the right number.  Yes, I am serious.  Because the requirements I "failed to meet" were 1. the patient must have a neuromuscular disease and 2. that disease must significantly impair breathing.

Yes, I am serious.  Ya know, these panels should be made of patients or parents of patients.  I GUARANTEE the outcome would be different.

I know I'm supposed to be rah, rah, it's National MG Month...and be all informative and positive and stuff.  But honest to God, right now?  I'm starting think that it really doesn't matter what I say or do anymore.  What good does it do? 

Chronic Illness Upon Chronic Illness Upon....

photo by disboomer.com

Okay.  I'm tired, and horribly, monstrously, hideously a little cranky.  It started when I had to take my morning pills.  All 16 of them.  Which got me to thinking about all the crap that comes along with having Myasthenia Gravis.  Like diabetes.  I have diabetes because of the HUGE amount of steroids I've been on to keep me alive.

Moving on to lunch-ish pills:  Another 8.  Dinner and bedtime:  11 more.  So, for those of you without calculators, that's a grand total of 35 pills a day, and that's not including my insulin.  So that's 245 pills a week to keep me going.  I fill my ginormous pill box once a week, and I dole out 245 pills.

Do you know how sickening that is? No pun intended.  At least once a month I contemplate just throwing the whole damn thing away and letting nature take it's course.  Seriously. I mean, without modern medicine I wouldn't be alive.  So how far do I push it?

Now don't get me wrong, I'm not like, all into Obama-care where you stop getting medication when you're 70 because you're old and useless by then, and have taxed the system enough with your sorry self (can ya tell I'm a fan???), but I'm just asking MYSELF the question:  How much do I do?

Right now, the answer has to be "As much as I can."  I have a child.  I don't want him growing up without a Mommy.  Sometimes, to be frank (and ernest!) it just plain SUCKS.  I take Calcium and large quantities of Vitamin D to prevent further bone loss.  I take anti-depressants and anti-anxiety meds (well, I needed the anti-depressants before MG, that's just a chemical thing)...because I'm so stressed out all the time and have to subject myself to all these treatments and tests and appointments...

I take stomach medication so I don't get ulcers from all the other medication I have to take.  I take a medication that people that have organ transplants take (so they won't reject their new organ) to suppress my immune system.  It could kill me.  But if I didn't take it, along with the plasmapheresis, I would die.  NO I am not kidding, or being facetious or exaggerating.  I. Would. Die.

It all gets so exhausting sometimes.  Honestly.  Sometimes I just want to rest.

Trying To Focus On The Blessings

This morning has been a very melancholy one for me.  It's getting warm out.  The time of year when most people go outside, go to the beach, go swimming, have picnics outside, enjoy the warm weather...

But I can't do that.

Summer is usually a very lonely time for me.  I have been trying to focus on the positives in my life, but today it's been hard.  I know I have it so much better than so many, even with my health issues.  I have a beautiful home with a husband and son who adore me.  I have 3 fluffy dogs that drive me insane love me a lot too!  I really do love my doggies...sometimes they just get loud.

June is National Myasthenia Gravis Awareness Month, and so I'm posting each day about MG and its lovely effects on my (and others') life.  It's exhausting to always FORCE yourself to focus on the good when it's so much easier to focus on the crud and complain.  I try not to whine and complain, but hey, we all have our moments. Sometimes the grief of what I have lost to this disease consumes me.  But then I look Up, and remember that I have a Hope and a Future waiting for me in Heaven, and that this life is fleeting compared to eternity.

AND I'm getting my first 10 "Chronic Illness Packets" out.  Gotta get working on my book again too.  I made HUGE progress last November with NaNoWriMo.  Not much since then.  I need to get a new computer (working on that!), but that's no excuse.  Gotta get on it.

I'm a little in a funk from pheresis too.  Had 2 treatments last week, and have one more this Wednesday.  Then I will be done for a loooong time.  I'm hoping to go all summer.  We shall see!

Until tomorrow....remember, just because someone LOOKS fine doesn't mean they ARE.

Kerri's Kreations

Kerri's Kreations is my business that started almost one year ago as a way to help spread awareness about Myasthenia Gravis, and raise money for the local chapter of the Myasthenia Gravis Foundation of America.

June is National MG Awarenss month, so most (if not all) of my posts this month will have to do with MG.

Today, I wanted to post a few pictures of some of my MG Awareness Jewelry.  Ten percent of all sales, whether the jewelry is specifically MG related or not, goes to the MGFA Great Lakes chapter.
For more information, go to www.facebook.com/MGKerriJewelry

MG Awareness earrings

The teal ribbon is the "color" for MG, and the snowflake is also a symbol for MG because they call MG the snowflake disease.  They call it that because even though myasthenics all have the same disease, almost every person has a slightly different "version" for lack of a better word.  Some of us can take certain medications, some of us cannot.  Some of us do treatments that work wonderfully for us, but for others, do not work.

An MG Awareness bracelet with an engravable medical alert heart shaped tag

This is a silver chain with a piece of sea glass under the teal MG ribbon, with a snowflake on the bottom.

There is no cure for MG.  Together, we can find one.

June Is National Myasthenia Gravis Awareness Month

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

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

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

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

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

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

How To Avoid Vacation Scams

Have you ever gotten a postcard in the mail telling you you’ve won a vacation?  All you have to do is go to this “brief consultation” that turns into an hour long pressure-filled sales meeting?  As you can tell, I have.  They promise you the moon, and deliver dust.  You sit through this meeting hearing how fabulous it would be to have a timeshare or own a membership to this exclusive club or that amazing resort.  Well, some of them are nothing but Vacation Club scams.  Some are legit, but you have to really do your homework.

I was introduced to Vacation Choices via the internet, and discovered they have an “A” rating with the Better Business Bureau.  That means they haven’t had complaints by customers, or if they HAVE, they were settled to the customers’ satisfaction.  They also have a 10% price guarantee, meaning if you find a vacation package exactly like the one through the concierge service of Vacation Choices, they will not only match the price, but they will beat it by 10%.  Sounds good to me!

But don’t take my word for it.  Any time you are going through a service you haven’t had experience with before, there are some things you can do to check them out.   Look at gain versus cost.  If you’re talking long term timeshare, what is it going to cost you?  What are your benefits from it? Another important thing to understand is if you can get out of the deal, and how you would do that.  Do they have a clause saying you have to be a member for 10 years before you can “quit” or sell?  Find out before you buy.

Beware of places who pressure you by saying you can only get the deal they are offering right there, at that moment.  There shouldn’t be pressure for a legitimate vacation.  And most of all, if it sounds too good to be true, it probably is.  There is a lot that goes into vacation planning; maybe Vacations Choices can help you!

This is a sponsored post