Monday, April 30, 2012

Happy SITS Day To Me!

Welcome!  Come on it and stay a while!  Today is a very special day!  It is my SITS day.  What is SITS?  Well, it's a group of lady bloggers from ALL walks of life.  We've got it all...working moms, stay at home moms, single moms, career women, teens, college age, young married would fit right in!  If you blog, check them out.  Their button is on the sidebar of my blog, and there are over 8,000 women involved!  It's an amazing group and I have met some LIFELONG friends from SITS.

SO.  I am a stay at home mom who just started a jewelry business last July! Check it out, mention you're from SITS and get 10% off your total order!!  (

I have a miracle child, Jacob, who is beyond amazing.  I am married to a wonderful hubby, Doug, who is a cross between McGuyver and Daniel Boone.  Seriously.

I live on a farm, and after growing up in the city, it's been a challenge to say the least.  Here are some funny farm stories.

I also have a neuromuscular condition called Myasthenia Gravis.  You can read about that here. And here...
And here.

PLEASE check out my youtube video, if you check out nothing else.  It's about life with MG, and I REALLY  would like to spread awareness of this hideous disease.

Thanks so much for stopping by!  Leave a comment and I'll do my best to do the same!
Have a blessed day!

Sunday, April 29, 2012

The Snake Story (From NC)

Okay.  So.  We are on vacation in the Outer Banks, with my sistah Cindy and her hubby Rickey.  Well, turns out Rickey's kinda fond of snakes.  So fond, in fact, that when he found one right outside our door, he decided to put it in a box in their closet for safe-keeping until he could bring it somewhere safe to release it.  (Away from people mostly).

So Rickey decides we should see the snake.  He brings it out.  I FREAK.  I mean, start to hyperventilate, run for my life  walk away quickly, and that kind of thing.  Jacob thinks it's cool, and wants to pet it.  I'm like, have at it! (Rickey knows about snakes and that this was definitely NO danger to anyone).

So Jacob pets it and is all excited.  Doug, at the kitchen sink, says to ME, "I'll buy you ANYTHING you want if you let Rickey put that snake around your neck."

I'm like, "Are you serious??  Anything??"

Doug says, "Anything."

Well, I need a new computer.  Badly.  Up until now, he's put the kibosh on it.  So I was like, "Swear."  And he's like, "I swear." 

Well.  That's all I needed to hear.  I walked over, told Rickey to put it around my neck, but he better not dare let go!  And of course we needed photographic proof, so that SOMEONE can't back out on the deal (plus I did have 2 witnesses....3 including Jacob).

So......drumroll please......

I do NOT know what possessed me to do this.....

Someone said, "SMILE!"  I was like, "I'm going to pass out and you want me to SMILE???"
Like I said, I wanted a new computer reeeeaaalllly bad.  Obviously.  I had to touch the snake, that was part of the deal.  It wasn't even that big of a snake, but it started coiling around my hand and I could feel how strong it was.  It was surprising. 

Afterwards, I FREAKED.  I was hopping and jumping and shaking and flipping out and ran to the sink and scrubbed my hands like 20 times.... My hands were shaking, my heart was pounding....can you say adrenaline?

But I did it.  And it's a good thing too, because yesterday I turned my computer on and the monitor is all messed up. So Thursday I have 2 appointments in Grand Rapids, and then, I'm going computer shopping!

Thursday, April 26, 2012

What's Been Going On Lately

So here I am, feet up, in a hotel room, catching up on some clerical stuff, editing pictures, enjoying the silence (except for the buffoon next door who seems to be practicing how to open and slam a door)....  Feet are up because they are SO swollen from traveling, walking, sitting, and NOT having put them up at ALL except for bedtime for the last 2 weeks.

We are heading home tomorrow!  YAY!  It's been a great time, but I am ready to be home, and back to "normal" life, whatever that is.  Jacob has done really, really well.

{Okay door-slamming-dude, I'm about to get up and slam you!}

Jacob has had his moments, of course, but for a not quite 6 year old, he is doing really well.  Not sure how Doug has been getting everything in the van....

This is how I am feeling since we've been packing and unpacking so much:
So.  This rest this morning has done me a world of good.  Off to our last shops, a couple of caves, and then home tomorrow!  YAY!

Tuesday, April 17, 2012

Ah, That North Carolina Breeze

Oh my goodness.  The weather has been AMAZING.  Not too hot, but warm, and sunny.  I can breathe better here too.  Mom said it was the ocean air.  Who knew? (Okay, probably everyone but me!)  We are staying in an amazing house in Waves, NC on the Outer Banks.  The sky has been blue since the minute we crossed the state line.  There's always a breeze because we're smack between the Ocean and the sound.  My favorite spot in the world is the third floor deck.  You can see the ocean, and there's always a breeze.

We went fishin' again today...At first it was pretty slow, but then I started kickin' butt and takin' names.  The fish of the day was mullet.  The only mullet I knew before this was the know, business in the front, party in the back.  But the fish is reeeaaalllly yummy.  And today we had a total of 12.  I caught probably 6 of them. During the last hour we fished, I bet I hauled in 4.  It was CRAZY!  Doug had started cleaning fish, but we still had 3 poles in the water.  I would set one down to check the one that was wobbling, pull in a fish, holler at Doug to come and get it, and another pole was jerkin'.  Crazy.  My hands were numb for like an hour.

The bestest part of all is that my sistah Cindy and her hubby are here!!!  I finally got to meet my sister face to face.  And ya know what?  Sitting down and chatting with her last night I felt like we had known each other all our lives.  Crazy but true.  We have a lot in common, including MG, which is a big deal.  But it's just weird how she "knows" me.  Anywho.  Can't believe we're down to 3 days here already!  Then it's back to Cindy's neck-o-the-woods, and more fun!

So for now, that's what up with us....and I am LOVIN' North Carolina.  I know I couldn't live here though... the summers are BRUTAL as far as heat and humidity.  But this time of year?  Perfection!

And Jacob's having a pretty darn good time too!
A perfect picture of can almost hear him screeching and he's ALWAYS moving.

Trying to outrun the waves....Guess who lost?

But guess who LOVED it?

Thursday, April 12, 2012

Time For A Break

Well, time for vacation.  FINALLY.  This past month, this whole calendar year, has been....yucky.  Medical appointments, procedures, family illness, personal illness, medical scares, scars, surgeries, tests....  People from MG dying.  The son of a MG friend dying. 

So enough!  I am going to go on vacation....I will be posting on and off, telling you all what a wonderful time I'm having.

Please pray for safe travels for us, for a wonderful time together as family, and NO SICKNESS!!!


Monday, April 9, 2012

Too Much

Yesterday another friend from one of my online MG support groups passed away.  She went to work on Friday.  Saturday morning she sneezed.  She aspirated into her lungs.  She started vomiting from coughing so much, and aspirated that.  Was flown to a trauma center where she was intubated and put on a vent.  Her heart stopped 3 times.  No neurological activity.  She died less that 36 hours after the sneeze.


Too much sorrow in this world.

Two people I know just found out they have cancer.

I just want it to stop.  It's too much.

Sunday, April 8, 2012


He Is Risen

Now when the Sabbath was past, Mary Magdalene, Mary the mother of James, and Salome bought spices, that they might come and anoint Him. Very early in the morning, on the first day of the week, they came to the tomb when the sun had risen.  And they said among themselves, “Who will roll away the stone from the door of the tomb for us?” But when they looked up, they saw that the stone had been rolled away—for it was very large.  

And entering the tomb, they saw a young man clothed in a long white robe sitting on the right side; and they were alarmed. 

 But he said to them, “Do not be alarmed. You seek Jesus of Nazareth, who was crucified. He is risen! He is not here. See the place where they laid Him.  But go, tell His disciples—and Peter—that He is going before you into Galilee; there you will see Him, as He said to you.”  So they went out quickly  and fled from the tomb, for they trembled and were amazed. And they said nothing to anyone, for they were afraid."

Mark 16:1-8 NKJV

Thursday, April 5, 2012

Meaningless, Meaningless...

This post may be too "in your face" for some people, but for that I will not apologize.

"Remember your Creator
   in the days of your youth,
before the days of trouble come
   and the years approach when you will say,
   “I find no pleasure in them”—
before the sun and the light
   and the moon and the stars grow dark,
   and the clouds return after the rain;
when the keepers of the house tremble,
   and the strong men stoop...
Now all has been heard;
   here is the conclusion of the matter:
Fear God and keep his commandments,
   for this is the duty of all mankind.
For God will bring every deed into judgment,
   including every hidden thing,
   whether it is good or evil." 
Ecclesiastes 12:1-3, 13, 14

Yesterday was a horrible day.  A day where everything felt meaningless.  Why?  Because in the space of about 45 minutes, I found out that a friend of mine who lives in Florida and was recently diagnosed with MG, lost her son unexpectedly Monday morning.  At the ripe old age of 20.  A mom with MG buries her oldest son.

Then, minutes later I read that a man I have known (via my MG groups on facebook) for many years died suddenly yesterday in the early hours of the morning.  He had MG, but he didn't die from it.  He was wheelchair bound, and had many health issues that come along with limited mobility. He went into the hospital on Monday for a "stomach virus," and at 3:30 yesterday morning, he was given meds for nausea and his heart rate when crazy and he died.  He LOVED his wife and children, and especially his grandchildren.  He was ALWAYS doing research about MG and trying to help others.

I will not lie, there were times that Steven and I butted heads....he could be a bit...well....intense. (As can I). Perhaps because his intellect superseded his social grace.  But he loved the Lord, and is in heaven now, free from the chair, the pain, the sorrow, the burdens of this world.  And he always tried to be positive.  This was one of his last posts on facebook:

"Never forget about the power of smiling and keeping a positive attitude. Don't let the shadows of yesterday spoil the sunshine of tomorrow. Always continue to smile each day because life is simply way too short to cry about anything that's worthless. Let everyone know that today you're a lot stronger than you were yesterday. Nothing is more beautiful than a smile that has struggled through tears. Use your smile to change this world. Don't let this world change your smile."

I love that attitude.  It's not easy, to be sure. But Steven always remember what was TRULY important in this world.

And then this morning, another friend who lost her husband to MG a few months ago posted this:
Yup, I told you this post may be too "in your face" for some.  But you know what?  Deal with it.  There are so many people in this world that need YOU.  They need people to let them know they have value and meaning and purpose.  They need to feel loved and remembered. They need to know they haven't been forgotten.

Being disabled and not being able to do what I want, go where I want, help whom I'd like to...well, it sucks. Plain and simple.  I'm tired of "out of sight, out of mind."  I've been guilty of it myself, many times I'm sure.  But read the picture again.  "Don't come visit me after I die...I needed you when I was alive."

Those are powerful words.  Powerful. But truer words I have never seen.  Don't wait til the funeral to make your appearance.  Someone needs you NOW.  Someone like you.  Someone like Steven.  

Someone like me.

Tuesday, April 3, 2012


You know, so many people are struggling.  Most of you who read my blog know that I'm a Jesus-follower, and believe He is the only way to heaven.  You can agree or disagree, but I'm pretty clear on what I believe, and not shy about it.

I bring this up because the song "Blessings" by Laura Story has been going through my head over and over.  It makes me cry every time.  I have experienced that song.  "What if blessings come through raindrops?  What if healing comes through tears?"

Think about it:  if it never rained, we'd have no flowers.  And if you get something in your eyes, the best thing to wash them out is your own tears.

But my heart it so burdened by loved ones who are hurting.  Some are fighting physical illness, some struggle with mental illness (which is so invisible that some people don't even believe it exists!), people struggling with inner demons that just overwhelm them.  And it makes my heart break.

I have always been an empathetic person (EM-pathetic, not simply pathetic, thankyouverymuch).  When I was little, and my cousin would get disciplined, I would cry.  Seriously.  It's kind of the same now, but on a broader scale.  If I could take the burdens of others I would.  I have a few MG friends right now (several really,) that are going through SO SO much....And I wish with all my heart I could do something about it.

But it's not my place.  It's God's.  It's Jesus's.  HE is the only only One who can take the burdens.  Before I had MG, I was not on a great path in life.  I was doing things I knew weren't what God wanted me to do.  But I was so insecure, and so self-absorbed I did them anyway.

God got my attention.  He loved me too much to leave me where I was.  And if it took MG to do it, so be it.  I have a better life now.  Do I wish I was better? Absolutely.  Do I wish I could breathe every day really well and run and jump and roll around on the floor with my son?  Of course.

But would I trade all of the blessings that came with this wicked disease? Nope.

I guess in my rambling, round-about way I'm trying to tell you that there is HOPE.  God loves you.  He wants your heart.  He doesn't want some blindly following robot.  He want to know you.  He already loves you.

When I became a mom, the sacrifice of God sending His only Son to earth to die a horrible death took on incredible new meaning to me.  I don't know if I could do it.  I love my child more than my own life.  To send him to a place where people would mock him and beat him and eventually kill him?  Even if it was to save others???  Man.  I don't know.  I could give up myself, but my son?

Just think about that today.  The God of Heaven wants YOU to be His child and ease your burdens.  Will life be all sunshine and roses.  NOPE.  But it will be different.  Better.  More joyful.

Anyway.  I'll step down from the preachin' box now.  That wasn't what this post started out as, but maybe that's what someone needed to read today.

Monday, April 2, 2012


Well, my trach continues to heal, and this morning I actually felt GOOD for a while.  First step in getting over the "pheresis hangover."  Funnily enough, I have said several times that sometimes when I wake up in the morning I feel like I have a hangover but didn't get to have any fun the night before.  (Many of my MG friends agreed with that!)

Now for those of you who have HONESTLY never had a hangover, imagine the worst day of your life, you got 1 1/2 hours of sleep, you're nauseous, have a wicked headache, you feel like a thousand cactus prickers are in your eyes, and your mouth feels like you've licked shag carpet all night long.  You just feel miserable.  Almost like the flu, but you can't throw up and you don't have a fever.  (This is all what I've heard anyway....) {wink}

The day after pheresis, for me, is like that.  Some people have it and jump right out of bed and feel great right away.  Um, hate you.

No, really, some folks feel fantastic right away.  I, however, do not.  This time it's taking a couple of days, but we're getting there.  I really did feel pretty darn good for a couple hours earlier today.  Now I'm getting kind of tired, but I've been busy all day, as usual.

The other HUGE relief is that I'm done with my Medicare appeal...You know, the one where they are telling me I don't qualify for a cough assist machine because I have to meet the following criteria: (and I quote)
"1.  They have a neuromuscular disease (followed by a bunch of diagnosis codes...don't even get me STARTED on that...) and
2.  This condition is causing a significant impairment of chest wall and/or diaphragmatic movement, such that it results in an inability to clear retained secretions."

Um, SERIOUSLY???  Have these people HEARD of MG?  This cough assist helped me stay OUT of the hospital when I had pneumonia this past fall.  It was PRESCRIBED by my doctor.  Airway Oxygen already appealed the ridiculous decision because Medicare didn't pay them.  So now I had to file a "Reconsideration Request" of the "Redetermination Notice."  Excuse my vulgarity, but what a bunch of bullsh!t!!  Imbeciles.
Like I have nothing better to do with my time...

So yeah.  Now I'm just waiting on the SECOND "Certificate of Medical Necessity" (one was filed with the appeal.) to go with my letter, their form, and my 5 attachments.  UG.

So that's me in a nutshell today.  Crazy, busy, and relieved.

Kids and Technology

Thanks for the guest post by Jonathan Curtis

Some days when I look at my kids I can’t believe how much things have changed since I was their age. They are good kids, but they have so much more than my husband and I had growing up. We didn’t grow up poor, but we didn’t have access to all of the technology they do. I feel like it distracts them from all of the activities they should be doing. They each have their own laptop with clear wireless internet, and they are on them all the time. They also have an Xbox that they love to play. I can’t complain since they are good students and work hard, but sometimes I think they are missing out. I wish they would go outside and run around and have fun like we used to do. During the spring and summer months I was rarely inside hanging out with my parents. I hope that when they get into high school they will care more about making friends and being away from us. We are definitely ready for a break from having them around all the time! 

This is a sponsored post.

Sunday, April 1, 2012

Another Quick Update

Well, I get to look forward to NO doctors or dentist appointments, no treatments, no surgeries, no tests...until vacation, and then it's alllllll relaxin' time.

The trach is doing MUCH better.  Just this morning when I cleaned it there was minimal pain.  HALLELUJAH!  SO much better.  Yikes.

The pheresis from Friday is still draggin' me down.  It was run slower, and there was a different brand of albumin (or it was in a different bottle at least).  I'm hoping I'm just psyching myself out about the different albumin and that it really doesn't matter.  I know some people with MG who get IVIG need a specific brand or they don't get the same benefits or have worse side effects.  With me, it's how fast I run.  I can't run at 80 or 90, A) because it takes all dang day and B) it seems like the longer I'm on the machine the worse I feel.  Friday I ran at about a 90 average.  Phhhht.

Anywho.  Check out my jewelry site:  New promo:  From now until April 11 (I leave for vacation soon after, and have to get the house sitter all situated, pack etc.) free key fob with any $25.00 purchase, special orders not included.  Happy shopping!