Thursday, March 29, 2012

I Really Am Still Here

This has been the craziest year.  The most medically invasive since 2000 when I was hospitalized for a diagnosis.  Coming up on 12 years.  Crazy.

But so far this year I've had like 30 medical appointments, tests, procedures, etc.  Had surgery on my trach last Thursday, and everything went really well.  However, the results are both good and bad (seems like everything in life has some of each)....the GOOD result is that the inside of my trach is granuloma-free, and I can breathe a lot better.  It also doesn't hurt on the inside. 

The BAD part is that the doc used silver nitrate (which is protocol), and it lingers.... It burns from the inside out, so this is what I have now:

Yes, it hurts as bad as it looks like it does.  It should be better by the time we leave for vacation though, and after tomorrow's plasmapheresis, I am DONE with doctors, dentists, tests, appointments, etc. until we leave.  SO I have 2 weeks of nothing but vacation planning.  Sigh.  It's about stinkin' time!!

Sunday, March 25, 2012

Quick Update on Me.

Hey everyone!

I am thrilled to say that surgery went as well as it possibly could have.  I didn't have any trouble coming out of the anesthesia, they didn't need to figure out a breathing tube while they were working on my only airway while I was "under" (something they had been a bit concerned about; what if they took out the trach and didn't have a viable airway while they worked?  Since my vocal cords are scarred shut, they couldn't intubate me from above.... I just prayed a lot and figured, oh well, I'll be sleeping, so it's not like I'll KNOW if they have a problem!)  No excess bleeding....

The only bummers were 1. the doc used silver nitrate instead of cauterizing....I didn't ask why, I just wonder if maybe the cauterization would somehow have caused more inflammation, thus increasing the likelihood of granulation tissue sooner rather than later, and 2. I had to stay in short stay (outpatient) for FOUR hours AFTER an hour and a half in the recovery room, because of my sleep apnea.  And I didn't even get to be on the side with "my" nurses (the ones I have for pheresis).

My surgery was Thursday, Friday I was still a complete mess (like weak-tired-in pain-run-over-by-a-bus-kind of mess).  Slept til 10:45, then laid down again for a few hours in the afternoon.  Yesterday was pretty decent, and today, other than the scalding, blistering, raw-hamburger-ishness of my stoma from the silver nitrate, I'm doing pretty good!  Considering all the crap I have wrong with me (MG in particular) I think I'm doing pretty darn good!

Have a dentist appointment Tuesday and pheresis Wednesday and Friday, then I think I'm actually done til vacation.  I've had more appointments, tests and procedures this calendar year...something like 28 or 30 all told.  Geez.  Kind of hard to have a life, raise a child, homeschool said child, run a business, be a wife and homemaker when you're always getting poked, stabbed, or prodded by something or someone!

So, that's this week for me. How about you?  Anything fun planned?

Wednesday, March 21, 2012


My brain is having a really hard time even functioning today.  It's like 90 flippin' degrees.  It's MARCH.  In MICHIGAN.  This is ridiculous.

Surgery tomorrow on the trach....would appreciate your prayers.  That's about all I got today.  I can barely hold my head up and keep my eyes from closing. MG and heat do not mix.  Ick.

Tuesday, March 20, 2012


Hi everyone,

I have a friend named Karen in California who has MG quite severely.  She has been in the hospital on and off for weeks now trying to get treatments, but first her port came unattached, then they had to do surgery to reattach it. That incision got infected with both staph and pseudomonas something-or-other that is more dangerous for myasthenics than even staph (MRSA).  So she's been dealing with unbearably painful cleansing of that open wound, packing it, cleaning it, over and over.  She's finally gaining ground on the infection, but she didn't have access for her treatments.  So they put a PICC line in her right bicep.

She developed a blood clot.  They had to take the PICC line out.  They can't put it in her left arm because she has a pacemaker and the leads are such that they couldn't safely weave a PICC line through all the wires.

Last night they tried 3 times to get a Hahn catheter into her jugular. (Yes, in her neck...I had that when I was first in the hospital).  They were unsuccessful.

Through all of this, Karen has maintained an unbelievable strength.  She is STILL sending out cards of encouragement and care packages to other people from her stinkin' hospital bed! I sit here weeping for her...I am asking you to pray for her.  She has to go through trying to get a line again this morning so she can get treatment for the MG.  This woman has endured far more than anyone else I know.  I struggle to put into words how I feel, because I have been there, and I know what it feels like to wonder why God isn't intervening in the way I think He should be.

Karen is depending on God to get her through this....and she recognizes that God is watching over her and giving her the strength.  She also has 2 children, ages 10 and 4 that need your prayers.  Her husband as well.  They are, I'm sure, scared, tired, overwhelmed....Please send this to anyone you know who will pray for her and her family. Put her on your church prayer chains.  Please.

I love this woman like a sister, and it is absolutely breaking my heart to see her go through so much, especially because I truly know what she's dealing with.

Thank you.

Monday, March 19, 2012

What Will They Say?

I've heard this song before, but I was listening to the radio this morning while I was doing some stuff on the computer, and the lyrics just jumped out at me.  I hope this doesn't sound pious or uppity or whatever, but I truly want to be remembered this way. (Not trying to be morbid or anything...)

I have seen recently some examples of genuine hearts, giving souls, even though these people are suffering as they give...and it's really inspired me to be even more like Christ.  To take care of those in need.  To help the least of these.

Live Like That by Sidewalk Prophets

Sometimes I think
What will people say of me
When I'm only just a memory
When I'm home where my soul belongs

Was I love
When no one else would show up
Was I Jesus to the least of those
Was my worship more than just a song

I want to live like that
And give it all I have
So that everything I say and do
Points to You

If love is who I am

Then this is where I'll stand
Recklessly abandoned
Never holding back

I want to live like that

I want to live like that

Am I proof

That You are who you say You are
That grace can really change a heart
Do I live like Your love is true

People pass

And even if they don't know my name
Is there evidence that I've been changed
When they see me, do they see You

I want to live like that

And give it all I have
So that everything I say and do
Points to You

If love is who I am

Then this is where I'll stand
Recklessly abandoned
Never holding back

I want to live like that

I want to live like that

I want to show the world the love You gave for me

I'm longing for the world to know the glory of the King

I want to live like that

And give it all I have
So that everything I say and do
Points to You

If love is who I am

Then this is where I'll stand
Recklessly abandoned
Never holding back

I want to live like that

I want to live like that

I would challenge everyone reading this to really think about this.  I know that not all of my readers are "Christians", but those of you who know me know I am, and that I share my faith on my blog frequently.  It has helped me deal with this illness.  God gives me Hope.  And without that... I wouldn't be here.

I want so much to be physically stronger so I can do more to help "the least of these"....But I will do what I can.  We can all do something. 

Correction On "Help Us Find A Cure"

Okay, not sure what I was thinking, but I'm blaming it on the MG "brain fog."  (It really does exist, there's scientific proof).  However, I was not an economics major in college, and I don't do well at math, especially when I'm tired or stressed, or have too much on my mind, which is pretty much all the time.

Anywho.  I was thinking about the figures on the donations and stuff.  If I get people to donate money, 100% of the money made from the bracelets at the walks will go to the MGFA.  So, if I get $7.00 in donations, and the bracelets and key fobs sell for $15.00 at the walks, $15.00 will go to the MGFA.  

I am tickled to report that I have already gotten $47.00 for materials and shipping for the bracelets and key fobs for the walks.  That means (we'll round up...I CAN do that) 7 items for the walks, and $105.00 for the MGFA!

YAY!!!  And, I already had one request from a woman in Kentucky, so she's getting 7 items! Thanks to YOU!!!!

Sunday, March 18, 2012

Jacob In His Element

Loves playing ball with Daddy

He actually used a lasso to catch this poor thing.

Huntin' frogs

Sigh.  Can't believe how big my little boy is getting.

Saturday, March 17, 2012


As time goes on, more and more of my MG friends are getting sicker and sicker. As most of you know I started a jewelry business to help raise awareness as well as to donate money for research. WE NEED A CURE. People I love are sick with infections that they wouldn't have if they didn't have MG.

SO. I am doing something I haven't done before. I am asking for donations to help me send MG Awareness bracelets and Key fobs to the MG Walks that are starting to take place all over the country. ANY amount you can donate would be amazing. One dollar would have. If all 300 people gave one dollar, I could send 43 bracelets or key fobs out. And the MGFA would have $344.00 to go toward a cure.

I wish I could financially just send out a bunch of them for free. Unfortunately I can't. So I'm doing them at cost, and to cover shipping charges, and $8.00 from each bracelet or key fob sold goes to the MGFA for research for a cure. Just 125 bracelets or key fobs would be $1000.00 to the MGFA.  I would like many more of course, but that would be AMAZING!

Many people are walking in the MG Walks as well, and you can support THEM by pledging to their specific walk. For more information on the MG Walks, please go to or call 1-855-MGWalks.

If you are interested in donating ANY amount to help me send bracelets and key fobs to these walks, please email me at

We have to find a cure. Thanks.

Why I Love nomorerack!

Oh my gosh.  Seriously.  The other day I was at my doctor's office and one of the girls behind the counter was talking about a square amethyst ring she was going to purchase.  I couldn't help but nose my way into the conversation because 1. she's talking about jewelry and 2. she said "amethyst."

So I gave her my business card, but I also told her about nomorerack.

If you haven't checked it out yet, WHAT ARE YOU WAITING FOR??  Honestly, yes, this is a sponsored post. But I would write about nomorerack anyway because it is AWESOME.  I recently got a pair of diamond hoop earrings (yes, I said diamond) for $20.00.  Each item you buy, no matter how big or how small is only 2 dollars shipping.

Here's how it works:  You go on to and see the eight deals for that day.  They always have a free deal as well, and all you pay is the $2.00 shipping.  I have gotten some awesome jewelry for just $2.00.  And it's NICE stuff. I mean, sometimes I get nervous about buying things online because the picture may look terrific, but then you get it and are disappointed by the quality. 

Only ONCE did I receive something from nomorerack that I was not 100% thrilled with.  And that's because I didn't read the fine print, so it was kind of my fault.  I could go on and on.  I have gotten probably 20 things from nomorerack since I found out about it.  At least.

Every day at noon they list the items for a 24-hour period.  The free deals go FAST, so make sure you're there on time.  It's totally cool.  Check it out!

This is a sponsored post.

Friday, March 16, 2012

My Goofball

My Knight.  With a plastic bucket on his head.  Mmm-hm.

This is the same dog that he used to carry around less than 2 years ago.  Sigh.

My Knight in full battle gear (including light saber).

And this is this morning, when he decided he wanted a pegleg, and got his foot stuck in a Pringles can.  It took 1/2 hour and a lot of baby oil, but we got it out.  (After laughing until I almost passed out, that is.)

Thursday, March 15, 2012

More Reasons Why I Love MG

Yes, you read that correctly.  More Reasons Why I LOVE a chronic neuromuscular disease with no cure.

There truly are reasons.

First and foremost, this disease has taught me what REALLY matters in life.  I used to worry about EVERYTHING.  To the point of making myself ill.  I would worry and fret and lose sleep over things I had absolutely no control over.  Part of it was untreated anxiety and depression, but even after that was treated, I still worried.

Until I got sick, and almost died.  When you literally come back from the brink of death, what Bobbie Sue Rosepetal thought of your prom dress isn't quite as important as before.  When you almost reach the end of your life at the ripe old age of 29, "fitting in" with the "cool kids" isn't worth a hill of beans.

You know what matters?  GOD.  Getting to know him on a much more personal level and knowing without a shadow of a doubt that HE IS.  And that even if the "worst" this world has to offer happens...and I die.... I will be in heaven, for eternity, with a new body and no fears and no tears and no pain or sickness or grief.  No more hurting.  I can't see how that is a bad thing.

FAMILY.  A husband of six weeks who decides to stand by his word, his vow, and truly live in sickness or in health.  A miracle son born to a woman who in no medical way should have been able to conceive, let alone carry, a beautiful child.  Parents who stayed days at a time when I was in the hospital 150 miles away so my husband could work 4 days a week and be with me the other three.  For almost three months.

FRIENDS.  Good, real, true, friends.  The kind that are left when everyone else is tired of your illness.   The kind that you've known for 20 years, or 20 minutes.  The saddest thing was learning that "old" friends don't mean "true" friends.  But the best thing was learning that people you hardly knew at all loved you and would commit to helping you, and follow through with it.

And the second best thing about this despicable disease is the amazing people that I have met along my journey.  My friend Karen, in California, who as I write is probably getting a horrible wound cleaned and repacked, who is in insufferable pain, and yet sends ME a card thanking me for being a friend.  Karen has MG.  She had a port for treatments, and it "got lost."  It detached from where it had been surgically implanted, and she had to have more surgery to find it and reattach it.  And it got infected.  Badly.

They finally had to remove it, and she has a horrible gaping wound in her chest which is raging against her body with a terrifying infection.  And yet she still encourages others and thinks of others and is giving and the most generous woman I know.  Gracious.  Generous. A living, breathing example of how to live, despite her pain.

My sweet sistah Cindy, who is truly a sister in every way that matters.  She has MG.  She has a full time job working with addicts and helps them on their way to recovery or afterward, wherever they are in their journey.  She has the biggest heart, and is one of the most amazing women I've never met.  (I can say that for another 31 days, then I will BE with her in North Carolina!! Whoooo-Hooo!!!!)  I KNOW that I can call her in the middle of the night and say "I need to talk" and she will listen.  Really, truly listen.  And understand.  You can put a price on that.

The people I have met on this path have, 98% of the time, been wonderful and positive.  There are always a few that, know. {wink wink}

And so I am grateful I have this disease.  My life is richer because of it.  Do I have bad days?  Oh my gosh, yes.  Do I hate it sometimes?  A lot of times.   Do I cry and rant and scream and pout and complain about it?  Yup.

But OVERALL, I'd like to think that I'm more positive than negative about it.  I have MG.  And what I choose to do with that is all up to me.  I could spit in God's face and rail at the heavens shaking my fists. (And I probably have.)

Or I can get up every time I fall and take His hand, and soldier on.  I can take what I've been given, and use it to help other people, to motivate, or encourage, or whatever I can do to help other people's lives be just a little bit better.  Even if only for a moment.

Sunday, March 11, 2012

"Blessings" by Laura Story

 I LOVE this song.  It makes me cry, but it's so beautiful, and it's so amazing.  God used a LOT of tears, trials and sleepless nights, but I have been blessed beyond belief.  Please read these lyrics carefully.  The song is beautiful.

We pray for blessings
We pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
All the while, You hear each spoken need
Yet love is way too much to give us lesser things

‘Cause what if your blessings come through raindrops

What if Your healing comes through tears
What if a thousand sleepless nights are what it takes to know You’re near
What if trials of this life are Your mercies in disguise

We pray for wisdom

Your voice to hear
We cry in anger when we cannot feel You near
We doubt your goodness, we doubt your love
As if every promise from Your Word is not enough
All the while, You hear each desperate plea
And long that we’d have faith to believe

When friends betray us

When darkness seems to win
We know that pain reminds this heart
That this is not our home

What if my greatest disappointments

Or the aching of this life
Is the revealing of a greater thirst this world can’t satisfy
What if trials of this life
The rain, the storms, the hardest nights
Are your mercies in disguise

Thursday, March 8, 2012

How Are You?

When you ask someone how they are, do you listen to their answer?  If they said, "horrible", would you say, "oh, that's good," and walk on?

This is something that has always irritated me.  People say, "How are you" like they are saying "Hello."  There is a HUGE difference, my friend.  "Hello" is a statement, and although it is usually reciprocated, there is no requirement for a response.

"How are you" is a question.  And it's not a rhetorical one.  A question usually gets an answer.  When people ask me how I am, I ask THEM if they want the truth. Some people just mumble, "Oh that's good" or something similar because they don't really listen for a response.

Some people are like, "what do you mean?"  And I'm like, do you want the truth? Do you REALLY want to know the answer to that question?  Most people don't.  But some, maybe out of sheer curiosity of the way I answered, say, yes!

My point is very simple.  If I had one wish for the human race (other than world peace, but hey, this isn't a beauty pageant it's a blog) would be that people start LISTENING to each other.  Not just HEARING.  I HEAR a lot of things right now:  the dogs shuffling around, the clock ticking on the wall (which makes me CRAZY, just sayin'), the click of the keys as I type this....but I'm not really LISTENING to anything.  (Except the %$^# clock!  Can we say OCD???)

I would wish that people would say what they mean, and mean what they say.  It's really a very simple idea.  If you don't mean something, DON'T SAY IT!  And if you DO say something, you BETTER mean it.  Otherwise, just keep you yap shut.  Again, not rocket science.

Just my thoughts for the day.

Wednesday, March 7, 2012

Why I Fight So Hard

"If you want to build a ship, don't herd people together to collect wood and don't assign them tasks and work, but rather teach them to long for the endless immensity of the sea." -Antoine De Saint-Exupery

I can spout off facts and figures til I'm blue in the face, but unless I get people to CARE, it doesn't matter.  I do whatever I can...I make jewelry to sell so I can donate to the MGFA on a regular basis.  I have this blog on which I am very open about my struggles and victories.

I have put videos on youtube where I have bed-head and not a stitch of make up on (and this from a girl who used to not even walk out to the mailbox without makeup on!).  I am willing to embarrass myself and talk about things that 10 years ago I wouldn't even whisper about.


Because I want people to UNDERSTAND.  I don't want to order them around and tell them to give money here and there or whatever.....I want them to "long for" people with chronic illness and  develop compassion and caring for their fellowman.

Call me a hopeless optimist.  I just have to believe there is more.  That there is better.  That people can love and be decent to one another.  If I didn't have that to hang my hat on, I'd have a hard time holding my head up at all.

Tuesday, March 6, 2012

Random Facts About Me

Okay.  So my brain is not working today.  It is overworked and under-rested.  So.  Thought I'd just share some things about me you may or may not know.

1.  I am the youngest of 5 children. 
2.  I never wanted an only child. (No offense to only children, I just always wanted a LOT of them).
3.  I went to college right after high school at Indiana Wesleyan University.  I was an elementary education major.  I wanted to go straight through to get my Master's and then my PhD.  Not sure what happened there.
4.  I didn't know what I wanted to be "when I grew up" until my senior year of high school.  In 3rd grade I wanted to be a doctor.  Until 8th grade when we had to poke our own finger to check our blood type and I almost passed out.  Little did I know I would become a professional medical patient instead.
5.  I am working on a "life list."  Not a bucket list.  My life list will be as many or as few things I want to do, maybe 100, (because it's a nice number for those of us with OCD), but will not guilt myself about if I do not do them.  Some will be big, some small.  I will eventually put it on my blog so ya'll can know how silly I am my deepest aspirations and dreams.
6.  I got married when I was 29, and had my first and only child at 35.
7.  I have a brother who lives in California whom I hardly ever see or talk to, and I hate it.
8.  I can speak a little bit of Spanish.  Little.  Pocito.  No mas.
9.  My oldest sister taught me how to count to 100 in German when I was 4 years old (I was smart back then...kinda like a trick pony), and I still remember how.
10. I love to read, but haven't had time or energy to do so lately.  When I was in 2nd grade, one other girl and I were in our own reading group because we were ahead of everyone else.  Don't know what happened to my brain, but it's not like that anymore.

So there you have it.  10 completely random, unimportant "all about me" trivia.  Whoo-Hoo.

Sunday, March 4, 2012

What A Weird Winter

Good grief.  What a bizarre winter we are having this year!  Last week one day it was 60 degrees.  In Michigan.  In February.  Today, there's 3 inches on snow on the ground that we got overnight.  Later this week it's supposed to be 50 and sunny.


I remember as a kid walking through 3 feet of snow to get to school (on a cement sidewalk, not uphill both ways barefoot, blah blah blah).  Seriously...snow would come in the winter and it would STAY.  I remember trick-or-treating in the snow.  Being mad because we had a cool costume and had to wear our big ol' winter coats over them.

This year, we've had snow on the ground like 4 times, and then it goes away.  AND, by the way, every time it snowed this winter (except for today) I have HAD to get out somewhere. CRAZY.  Anywho.  Just strange.

On a totally different note...I was correcting CBI lessons this morning (Crossroad Bible Instititue), which are bible lessons from prisoners all over the country.  Sometimes inmates do it for brownie points, and you can totally tell.  But the REAL joy, is when I get lessons like I had this morning, when you see a REAL change in someone's life.  I've been doing this for almost 12 years, and I've seen alllllll types.  The ones like today are just a blessing.

In one lesson, I can tell that they really get it, IF they are sincere.  I had one this morning that just warmed my heart.  This young man got saved in prison, and it's just SO cool to read about how his life has changed, and how he REALLY understands God's grace and mercy and forgiveness.  So cool.  Gives me hope, ya know?

Anywho.  Hope you all have a fantastic day!

Date Night

Guest post of the week by Bradley Guthrie

Friday night is date night at our house. We put the kids to bed by eight and my husband and I pick out a movie from our direct tv options and sit and watch it uninterrupted. Without the kids coming in and out we get an opportunity to watch something that we not only can enjoy but also may not be something suitable for them. The kids know that they are not to come into the den once we start our show. If they need us (and it’s pretty rare that happens) they can call for us from upstairs. Most of the time it’s a request for a glass of water or someone needs to be tucked in again. Sometimes we can’t find a movie that both of us want to see, but we try to take turns choosing when that happens. We are each often surprised when we actually enjoy something the other one has chosen! I guess we shouldn’t be, though. As long as we’ve been able to stay together, we must like more similar things than we realize! 
 This is a sponsored post

Friday, March 2, 2012

Stop Chirping!

"Who knows the beginning of the things which we CAN know? Theory! Theory! We chirp theories like chickadees because ignorance is a terrifying thing and we need the noise." -Walter Wangerin
This was posted on a friend's facebook status today, and it really caught my attention.  I am a person who used to HAVE to be surrounded by noise.  I still am at night, much to the dismay of my husband, who loves perfect silence at night.
I grew up sleeping with a fan most of the time because we didn't have air conditioning, and just got used to it to the point of needing the noise.  Now I have an oxygen concentrator and a vent, so I still have noise.  Can't sleep without it.
Now, however, during the daytime, I am learning to appreciate the quiet.  Part of it is having a 5 1/2 year old boy who actually talks more than I do.  The only thing moving faster than his feet is his mouth.  
But I think part of appreciating the silence is not being afraid of it.  Before I got sick, I had to fill every atom of space around me with something...noise, music, work, play, fun, people, and so on.  It was through the noise that I lost hearing that still, small voice.  I was so afraid of the silence and what it might bring....that I would have to own up to some inappropriate behavior.... That I would have to admit that I didn't know it all or have it all, that I couldn't DO it all.
"We chirp theories like chickadees because ignorance is a terrifying thing and we need the noise."  If we're talking and moving and doing and acting, we can't just "be."  If we're trying to figure everything out we don't have to live with the unknown, because the unknown is terrifying.
That's why people stay in situations that are HORRIBLE.  Because the familiar, whether good or damaging, is better than the unknown.  Well, today I challenge you to just BE. To embrace the silence.  To put aside the theories.  To stop trying to solve the world's problems... or even your own.
Just BE.  Listen.  Absorb.  Put down the remote, turn off the computer, take a deep breath, and just be.