One Facet of MG

One thing about MG:  you take a lot of medication.  A LOT.  So I thought I'd show you all what I have to do once a week.  And every. single. time. I have to do it, I want to throw it all out the window.

  These are all the bottles and boxes I need to fill my gigantic, four-times-a-day pill box.

The full box.  It's something like 42 pills a day at last count.

Trach cleaning supplies.

 Then, morning and night, I have to clean my trach.  I have to use a tiny bit of Hydrogen peroxide (some, but not TOO much or I get like burns around the stoma.  But I have to use SOME, or it gets infected really easily.)  and distilled water, I put that in the little plastic cup, and then use Q-tips to clean around and inside my trach.  I've had the trach just over 12 years, so I've cleaned it nearly 9000 times.  Probably more if you add in extra times for when I had to change it, or after surgery and I do it more often.  Between filling my pills (only once a week) and then cleaning my trach, it takes about 40 minutes.  How fun!

Just one aspect of what it's really like to live with this disease.  It's a lot.

If Old McDonald Had MG

{to the tune of "Old McDonald Had A Farm}

Old McDonald had MG.  Gasp, choke, cough, pee, barf.

And with MG he had some docs.  Gasp, choke, cough, pee, barf.

With some "ologists" here and some "ologists" there,
Here a doctor there a doctor, everywhere a specialist,
Old McDonald had MG.  Gasp, choke, cough, pee, barf.

And with MG he had symptoms.  Gasp, choke, cough, pee, barf.

With headaches here and fevers there,
Here a tumor, there a blood clot, everywhere a drooped eye,
Old McDonald  had MG.  Gasp, choke, cough, pee, barf.

And with MG he took some meds.  Gasp, choke, cough, pee, barf.

With steroids here and chemo there,
Here some CellCept,  there some Mesty, everywhere some plasma,
Old McDonald had MG.  Gasp, choke, cough, pee, barf.

And with MG he got no sleep.  Gasp, choke, cough, pee, barf.

With a bad dream here and a flashback there,
Here hard mattress, there no breathing, everywhere insomnia,
Old McDonald had MG.  Gasp, choke, cough, pee, barf.

And with MG he was-a-germophobe.  Gasp, choke, cough, pee, barf.

With infection here and pneumonia there,
Here bronchitis there gastritis, everywhere some hepatitis,
Old McDonald had MG.  Gasp, choke, cough, pee, barf.

And with MG he heard it all.  Gasp, choke, cough, pee, barf.

With a "lazy" here and a "fatty" there,
Here a "whackjob" there a "headcase" everywhere a mental illness,
Old McDonald had MG. {big finish...pretend you're a Rockette}

GASP......
CHOKE......
COUGH......
PEE.....
BARF!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

**DISCLAIMER**
Old McDonald really does NOT have MG.  This was written by an actual patient with an actual disease that's actually called MG.  Old McDonald is still happily on his farm.  No animals were harmed in the writing of this song.

Why I Do So Much Laundry (and Why I Love My Son!)

My Jacob in all his glory!

If there's one thing Jacob loves, it's mud.  He loves being "filfy diwty." (filthy dirty)  He made this lovely "snow" man when we had yet to have snow in December:

We just call him MudMan.

I can't imagine THAT would have felt good when he unthawed!

He is 100% boy, that is FOR SURE. And that's one of the things I love most about him!

Cheesy, toothless grin.

Oh, how I LOVE that face!

Goofy boy

But I love THIS face too!  He's such a goof.  I'm so blessed though....I love this child with all my heart!

Merry Christmas!

Mary was about 15 years old when she discovered she would be carrying the baby Jesus.  She was unmarried.  Her fiance was an older man, as was custom back in those days.  It was simply scandalous to marry someone who wasn't a virgin.  So there was Joseph, one day finding himself engaged to a pregnant girl he had never slept with.

But she WAS a virgin.  Jesus was the Son of God and the son of Mary.  Divine and human.  How is this possible?  It isn't.  Yet it WAS, because God can do anything.  Why on earth would God choose this situation to use to bring His glorious, precious Son into this world?  Jesus was leaving His home in heaven to come to earth. 

The most relevant equivalent I can think of would be someone like Bill Gates choosing to give up all his possessions, power, family privilege, everything, to go live in the ghetto somewhere, completely homeless.  Times a million.

So why?  I'll share my theory in a moment.

First, I want to take a look at the family blood line of Jesus.  In Matthew 1:1-6, we read:

"This is the genealogy of Jesus the Messiah the son of David, the son of Abraham:

Abraham was the father of Isaac,

Isaac the father of Jacob,

Jacob the father of Judah and his brothers,

Judah the father of Perez and Zerah, whose mother was Tamar,

Perez the father of Hezron.... (skipped a bunch)

Salmon the father of Boaz, whose mother was Rahab,

Boaz the father of Obed, whose mother was Ruth,

Obed the father of Jesse,

and Jesse the father of King David.

David was the father of Solomon, whose mother had been Uriah’s wife...

There's obviously more, but just the parts of these 6 verses, I wanted to point out the few names I have in italics. 

Jacob:  he was a thief and a liar.  He stole his older twin brother's birthright and blessing.  (Genesis chapters 25-27)
Judah and Tamar:   Judah failed to have his youngest son marry Tamar after his eldest son died, as was tradition back then.  (The brother of a widow's husband married her.)  So Tamar disguised herself as a prostitute and slept with Judah (her father-in-law).
Rahab:  was a prostitute  
King David, whom God called the apple of His eye (and the woman who had been Uriah's wife):
The woman was Bathsheba.  David saw her one day, and decided he wanted to have an affair with her.  So he did.  She got pregnant, so to cover up his sin, David sent her husband, Uriah, out to battle, in the front lines, so he would be killed.  Their first baby died, but then they went on to have Solomon.

Does this sound like the pedigree of the Savior of the World?  So why on earth are these people in the royal lineage of Jesus?

Because we are ALL flawed human beings, and sin is sin is sin to God.  It doesn't matter if you lie, cheat, steal or kill. It's all the same to God:  it's sin.  So there would HAVE to be sinners in the lineage of Jesus.

So why HIGHLIGHT them?  I believe it's the same reason that he chose Mary to be the mother of Jesus:  God can use anyone, anytime, for any purpose.  No one is too "bad" to be saved, or too "common" to be used by God for great and mighty things!  Mary was practically a child herself!  Rahab was a prostitute, yet she helped the Israelite spies get out of the land of Canaan.  King David was an adulterer and a murderer!  And yet THESE are the people that God uses.  I have made many mistakes in my life, yet God can still use me to do His will.

He doesn't wait for us to get right before He can and/or will use us.  He meets us right where we are.

So this isn't your usual Christmas post.  But on the day of our Savior's birth, I want you to really understand that Jesus came to save this dying world.  And every. single. person. in. it.

And that includes YOU.  Just the way you are.
Merry Christmas!

Our Gingerbread House

Jacob and I try to do a gingerbread house every year.  Well, previous years have been unsuccessful due to a variety of reasons.  But this year....viola!

Okay so I'm not so good with the people...

The roof turned out the best

Too pretty to eat!

The only thing that really bugged me was that we were following the design on the box...well, there wasn't enough candy to decorate it that way.  That's crappy.  They should have marked on the box that there wasn't enough to do what they had done.  They just let you assume you can design it that way.  But whatever.  We had fun, and Jacob LOVED it....so in the end, that's all that mattered.

What Part Does The Media Play

My husband and I were having a conversation at dinner tonight.  He brought up a very good point.  Why does the media need to cover tragedies like the Connecticut school shooting to the degree in which they do?  Why do they make these killers famous?

Everyone knows the names of the kids that shot up Columbine, and the guy who shot up the movie theatre, and the Amish school...why can't the media just leave it alone?  These killers are mentally unstable.  Most of them are suicidal as well... Don't you think that all the hype about "undestanding the motive of the killings" and almost glamorizing the tragedies makes these people think, "I might as well go out with a bang??"

And ENOUGH about the gun debates.  Good heavens people!!  That has about as much to do with this as talking about the price of tea in China.  What about MENTAL ILLNESS???  Does anyone but me recognize that ALL these people were messed up in the head?  And most probably showed signs all their lives.

But they did not get the help they needed, and therefore, their lives ended the way they did.

I would like to see the news just do the news, and then stop.  Leave these people to grieve in peace.  And get to the REAL bottom of the issues.  Mental illness affects SO many people in this country.  And many of them are either homeless or in prison.  And they certainly aren't getting any help there.

Mental illness has such a stigma attached to it, that's why we don't talk about it.  We try to assign blame, and figure out whose fault it is that Johnny has uncontrollable rage, and no one will help the single mom raising him.

Wake up America.  It's not about bullets.  It's about brains.

At A Loss

Today in Connecticut 20 children were murdered by an obviously mentally disturbed young man.  I heard the news today at my husband's work Christmas lunch.  I felt physically ill.  The first words that came out of my mouth: "Who shoots a CHILD?"

I want to be heard very clearly:  This world is broken.  It started with the breakdown of the family structure.  No more do we have the majority of children being born and raised by 2 parents.

In women UNDER 30, over 50% of children are born out of marriage.

In ALL ages of women, 41% of children are born out of marriage.

"It used to be called illegitimacy. Now it is the new normal." (New York Times)

“Marriage has become a luxury...,” said Frank Furstenberg, a sociologist at the University of Pennsylvania. (New York Times)

Children born in one parent homes have a higher likelihood of living in poverty, of having social and emotional problems, behavior problems, and failing in school.

Fifty years ago this didn't happen.

Fifty years ago children didn't get murdered at school by some deranged 20 year old.

Fifty years ago we still stood and said the Pledge of Allegiance in school, and we still read the Bible in school, and we still prayed.

But then we took God out.  And since then, all hell has broken loose.  Literally.

Columbine.
Virginia Tech.
A movie theater in Colorado.
A shopping mall in Oregon.
20+ children between the ages of 5 and 10, gunned down like animals.
A professional football player killing his wife/girlfriend and then himself.

Precious, innocent lives.  And do you want to know what I think?  I think it's because we, as a nation, basically gave God the finger, and instead of just smiting us right then and there, He left us to our own devices.  We kicked Him out, and He left.  He's not forcing His way back in...that's not how He works.

He's waiting to be asked.  So.  I'm asking.  Lord Jesus, Father God... forgive us.  Come back to us.  God tells us in His Word:
      "If my people, who are called by my name [Christian], will humble themselves and pray and seek my face and turn from their wicked ways, then I will hear from heaven, and I will forgive their sin and will heal their land." 2 Chronicles 7:14

And I'm asking the same of you.  This doesn't get any more REAL.  Evil is REAL.  God is REAL.  Today is the repercussions of our own stubborn, proud, arrogance.  Please join me, and ask God back into our Country.

Funnies

A Christmas Poem

This poem was written by my dear friend Venessa Sue, who has MG, and also happens to have a trach.  I've "known" her for many years, even though we've never met.  This is beautiful...please read and enjoy.

A STORY OF A BABY
by Venessa Sue Litewski

Shepherds on a hillside

keeping watch o'er flocks by night
when suddenly the sky was filled
with a strange, unearthly light!

An angel voice announced the news ~
God's Son, at last, was here!
An angel chorus in joyful song
of peace and love drew near.

'To Bethlehem we must make haste!'
the shepherds did proclaim
and leaving field and flock, they ran
toward the town of David's name.

Amazed, they found the newborn
with Mary close nearby.
Joseph, too, attending Him
alert to Baby's cry.

This Child had long been promised,
foretold so long ago ...
King of Kings ~ Deliverer
scripture told them so

And yet in that short moment
it seemed that they could see
another day approaching ~
this Baby's destiny.

Time rolled on, the Child grew
and ministered to man
He fulfilled every prophecy
and taught throughout the land.

People asked Him for His blessing,
at the sight of Him they cried
'Rabbi...touch us...heal us;
keep us safely by Your side!'

Then, at the time of Passover
the sacrifice was slain ~
this 'Baby' was MESSIAH!!
Christ Jesus was His name.

And though we can't conceive
of such a love as this;
the Baby grew to be The Man
who ransomed MY life with HIS!

Lost Relationships

Sometimes it's so subtle you don't even realize it's happening...until one day, you wonder when the last time you talked to so-and-so was.

Other times, communication just flat out stops, and you know you've been shafted again.

There have been studies on animals (I'm not saying they're right or wrong, so don't go all PETA on me....I'm just making a point) where if the animal is abandoned at birth, and is not touched by another being...animal OR human, they will die.

I saw on CNN the other day that people who have less than 1.5 "face-to face-real" friends, as opposed to facebook, twitter, etc., (not sure how you get the .5 part...) shorten their life span by 8 years.  These "friends" are people you talk to almost daily, people you see on a regular basis, people you get together with and do things with.  They had some psychiatrist specializing in socialization on there, and he said isolation is as dangerous to people as cigarette smoking.

Wow.

I guess I'm in big trouble.

I know people have lives.  I get that.  I can be busy too.  But I'd like to think that I'd make time for others.  I'd like to think that I would get out and visit people who can't get out themselves.  I'd like to think that Jacob and I would visit people in the hospital, and people in nursing homes, and people in prison, and people with chronic illness who just need some cheering up.

I try....I put myself out there.  I ask.  I invite.  And all I ever hear is "If you didn't live out in BFE...."  And that really bothers me.  Because I DO live in BFE, and there's not a damn thing I can do about it.  But just because I do, that means the whole world just gives up on me? 

People always have excuses reasons not to come over.  Or "hang out."

And then I get to see on facebook or hear about the fun they have with other people...and how they've been hanging out and it's been so much fun.

Nothing like adding salt to the wound.

But I pick myself up, put on a happy face, slap on some make-up, put up my hair, and....sit around.

So not so full of sunshine and roses today....But I said a while back I was done censoring myself.  So there you have it.  Me in all my glory. 

Time Management???

Okay, so the other day, my hubby tells me I have time management issues.  Obviously he is not here with Jacob, 3 dogs, 3 rabbits, 5 goldfish (all in the house) and homeschooling, business-running, bill-paying, blogging, medical-managing ME.

Because the ONE second he sees me sitting down with my feet up, well OBVIOUSLY I've been doing that all day long, and nothing else.  (No worries, we DEFINITELY "spoke" about that.)

So here are the things JUST TODAY (even before noon!), that have interfered with my "time management."

Jacob broke another ornament while I was in the bathroom trying to get ready because the "Airway man" was going to be here in 15 minutes.

While the Airway man was here, he had an intern with him, so a 5 minute visit took 20.

While the Airway people were here, Jacob was throwing a massive fit because I wouldn't come down the stairs to pause his video so HE could come UP-stairs.  (Which he was spanked for)

Jacob knocked my Paul Mitchell round hair brush into the toilet (right after he peed) because he was spazzing out about the fact that he's almost out of toothpaste, and I told him I had bought 4 tubes because they were on sale for one dollar.

Whilst cleaning my trach, said spazzing child knocked over an almost full box of q-tips, onto the nasty carpet, spilling probably 120.  I rescued the ones not directly touching the carpet.

Yesterday, the dog knocked over the Christmas tree.  AGAIN.  The first time (the day before yesterday) he broke my favorite glass angel "hope" ornament.

Yesterday, said dog also chewed a new hole in his tail.  Yes, a NEW hole.  He already had one that we are trying to heal up.  He had surgery to abrade the boo-boo and suture it (along with having a separate lump removed), so it's all wrapped up.  He already chewed through the original bandage AND got all his stitches and staples out.

Yes, we tried the cone of shame.  He would bump into things until it slid back far enough where he could reach his tail.

So yesterday this happened while Doug wasn't here so I had to deal with it.  EW.

I'm sure there are another 20 or 30 things I could mention, but that would probably not be the best use of my time....since I OBVIOUSLY have control over every minute of my day.

Tired Me, My Big Boy, and Sushi

I was so tired last night I literally couldn't see straight.  I still am raising my eyebrows a little so my eyes aren't completely shut.  I took another one but it's seriously too horrifying to post...even for me!  My face has never been SO droopy.

So for those of you who DON'T have a disability or illness, and you see me looking totally normal when I park in handicapped and go IN to Walmart?  This is me coming out.  So SHUT your FACE.

Yeah, this is my BABY.  {bawl, sob, snort, sigh, snot, bawl again}.  Two peas in a pod, the boy and his dog.  They are like this all the time when Jacob is "chillaxin'"....like they are from the same litter.  He even calls Black Dog (original, I know, but the kid named him when he was 3) his "brother from another mother."  Um, yah.

And this is called a California roll.  We don't live in California, but my husband just "threw these together" (for the very first time EVER).  The man can do ANYTHING, I swear.  MacGyver, Daniel Boone, and now I guess I have to add Iron Chef.  I don't know which one though...maybe Geoffry Zakarian.  He's pretty handsome for an old dude.  LOL  He's probably the same age as I am!

Anyway....good night!

Hope-Part Two

So back to Hope.

See, I couldn't live without it.  I really couldn't.  If this life was all there is?  I'd have ended it a long time ago.  I'm not being morose or morbid, just honest.  If this was it, if my suffering was never going to mean anything beyond my death, why go through it?

Yes, I have been told by people on this earth that I have helped them in some way, that I have inspired or encouraged them.  Which still takes me by surprise.  I think I complain and whine more than I smile sometimes, but hey.  Who's to argue?

But even if I DO inspire, it is not really me, but it is my Hope. 

“Yet if you devote your heart to him
    and stretch out your hands to him, 
 if you put away the sin that is in your hand
    and allow no evil to dwell in your tent, 
 then, free of fault, you will lift up your face;
    you will stand firm and without fear.
You will surely forget your trouble,
    recalling it only as waters gone by. 
 Life will be brighter than noonday,
    and darkness will become like morning. 
 You will be secure, because there is hope;
    you will look about you and take your rest in safety. 
 You will lie down, with no one to make you afraid,
    and many will court your favor.^"
Job 11:13-19

It is only because I know without a shadow of a doubt, that when I die, I will go to be with God in Heaven, and I WILL be whole again.  I will run.  I will swim.  I will SING.
  
"Oh, that my words were recorded,
    that they were written on a scroll, 
 that they were inscribed with an iron tool on lead,
    or engraved in rock forever!
  I know that my redeemer lives,
    and that in the end he will stand on the earth.
And after my skin has been destroyed,
    yet in my flesh I will see God; 
 I myself will see him
    with my own eyes—I, and not another.
    How my heart yearns within me!"

 Job 19:23-27

Oh, how I will SING!!!  There will be some hankie-wavin' for sure!  Mm!  I cannot wait.  I really cannot wait; yet wait I must. 

So wait I shall....

Hope- Part One

Hope.  One word.  One word that everyone knows, and probably says at least once a day.

"I hope it doesn't rain."

"I hope the mailman brings that order today!"

"I hope my boyfriend/girlfriend/husband/wife calls today just to say hi."

Here's what The New Merriam-Webster Dictionary says about hope:
hope (vb) : to desire with expectation of fulfillment
hope (n) : 1. Trust, Reliance  2: desire accompanied by expectation of fulfillment (sounds like the verb to me); also : something hoped for  3 : one that gives promise for the future

Well, when I talk about hope, I suppose I use different contexts as well (meaning not just one).   Most of my hope on a daily basis is the "something hoped for" (although it makes me CRAZY when part of a word or a form of the word is used in its definition!!). 

"I hope I don't get sick."

"I hope I can go to that meeting."

"I hope Doug gets home on time because I can't handle things alone for one more second!"

And I realized that most of my "hopes" are really "hopes" at all; not by definition anyway.  Because I'm not expecting the fulfillment of those desires.  I absolutely do not expect those things....I more like wish for them. 

Wishing is desiring.  It is not the expectation of fulfillment of that desire.

That actually JUST hit me like a ton of bricks.  What good are the 17 "Hope" signs I have plastered all over my house if I don't REALLY believe it? 

My goodness.  I think I have to just sit with that a while...so I just changed the title of my post from "Hope" to "Hope-Part One!"

Because THE most important Hope is the third definition of the Noun:  One that gives promise for the future....we'll get to that later.  Right now, I really want to ponder what I've just discovered about myself!

10 Things That Always Make Me Smile

This Chicken from the Fair with a REALLY Bad Hair Day

My Beloved

Surprises!  (GOOD ones)

 The Sun Breaking Through The Clouds.  Reminds Me of Heaven.

  My boy!

 Balloons

 This cartoon

 Hummingbirds

 Flowers

 Laughing Babies!

 

 

Just Another Monday

That's about it.  Just another Monday for me. 

Thought I'd be going crazy sending invoices and packaging orders.  Not so much.

Thought I'd be getting pheresis tomorrow....Not so much.  Jacob has a cold.  So now I have to reschedule everything.

Doug was having a fit yesterday over how cluttered and crappy the house looked.  So he cleaned his fool head off.  Yay for that.  But then I get the feeling (quite clearly) that I need to "keep up" with him.  And I can't.  And I get mad.  And he gets mad.

So I'm exhausted.  I took a shower this afternoon after I cleaned the bathroom...the magazine rack in there was a nightmare....dusty, nasty, all old crumpled magazines.  So I went through all those, put them in the burn box, vacuumed the bathroom, mudroom, dining and living rooms.  I can't lift my arms anymore.

And then I get the most beautiful gift.  An MG friend of mine sent me a notebook to keep all my medical information in.  It has all these tabs, and she even put paper in it.  And the front had my name on it in sticky foam letters, and it's amazing! And tucked in the front pocket was an awesome pair of Christmas snowflake socks!  What a blessing.  And what perfect timing.  Cuz here I was all feelin' sorry for myself, and then Doug says the mail is here.  I see advertisement after advertisement... everything junk mail, and then...One big envelope.  With my name on it. From Kimberly. 

So thank you my dear friend.  Thank you for your thoughtfulness.  And thank you God, for letting me know that there ARE people out there that I am important to.  I needed to know that today.

30 Days of Thanks

Well I've been in such a foul mood from being sick and trapped in this house all month that I didn't feel very positive and thankful.  And I thought it best that I not "share" some of the things I was thankful for at the time...they were a little....well...dark. 

However, due to the faithful prayers of friends and family, God's grace, and me finally getting over that darn cold, I have finally come out of my funk!

So, without further ado:

1.  I am thankful that God always loves me and forgives me when I act like a spoiled child, pout, throw a hissy fit, and stomp my feet like a two year old.

2.  I am thankful for my husband, who although not perfect, is perfect for me.  We balance each other (mostly!) and he keeps me grounded when I start to panic or freak.

3.  I am thankful for my amazing, beautiful little boy.  He is the light of my life.  He always has a smile for me, or something incredibly sweet to say to me to cheer me up.

4.  I am thankful for my parents.  They watch Jacob when I have pheresis, and watched him last night so Doug and I could go on a "date" for the first time in I don't know how long.  

5.  I am thankful for the rest of my family, crazy as we all are.

6.  I am SO SO SO SO thankful for having an amazing Thanksgiving Day at my mom and dad's house.

7.  I am thankful that I was able to go out and shop (TWICE) yesterday, and although today I am exhausted, it was SO worth it to feel like a NORMAL person for once.  Dinner and shopping in the same night???  Without Jacob??  It was AWESOME.

8.  I am beyond thankful for all of my MG friends.  Although most of us have never met, you are closer to me than most people I HAVE met.  Without your support, love, and encouragement, I sould be in a far different place. (And it wouldn't be a good one.)

9. I am thankful for Lindt Lindor truffles. (OH MAH WORD!)

10.  I am thankful for plasmapheresis.  Even though it isn't pleasant, the schedule I am on is giving me some semblance of functional life.

11.  I am thankful for technology like the computer, internet, and phones that help me keep in touch with the people I love.

12. I am thankful for ministries like Crossroad Bible Institute and Christian Pen Pals that reach out to those in prison.

13.  I am thankful for purple things.

14.  I am thankful for bunnies.

15.  I am thankful for how excited my child gets when he sees birds at the bird feeder, and knows what kind they are.

16.  I am thankful for our military.  I am thankful for their families, for their sacrifice, and their service.  Without them, I would not be able to enjoy the freedom that I have.

17.  I am thankful that I can homeschool my son.

18.  I am thankful that my husband is so good at so many things:  if it's broken, he can fix it.  He can cook like a Top Chef, and shoot like a Top Shot.  He has built amazing gifts for me (cedar chest, hope chest, boat shaped book case, jewelry boxes).  He is ingenious.  When I came home from the hospital many years ago, he hooked up my feeding tube and bag to a fishing pole because the machine hadn't arrived yet.  He also fixed my suction machine in the middle of the night, out in the TOTAL boonies in the U.P., in the middle of winter, with an earring wire.  He's amazing!!

19.  I am thankful that my niece's baby boy Caleb (born 2 weeks ago) was healthy and that Jessie had a good delivery.

20.  I am thankful for pizza.

21.  I am thankful for the nurses at the Short Stay Unit at St. Mary's hospital.  That's where I get pheresis, and they are so sweet.  Every single one of them.  They make me feel special and cared for and comfortable every time I'm there.

22.  I'm thankful for the folks at Michigan Blood (aka Grand Valley Blood), who perform the actual pheresis procedure, and take such good care of me while I'm getting my treatments.  They watch me closely and give me 100% of their time and attention when they are there.

23.  I'm thankful for Love Inc. and all the wonderful volunteers that helped to side our house.  I am thankful for Sue Flowers, my contact at Love Inc., and my friend.

24.  I am thankful for Miss Mindy, who comes to my house every other Friday for a couple of hours.  She is a volunteer through Wings of Hope Hospice who started coming to clean, but is now a dear friend.

25.  I'm thankful for my husband's job.  It is stable, steady, reliable, and it is so wonderful to not have to worry about layoffs or things like that.  After all, everybody poops! (For those of you that don't know, my husband is the superintendent of the Wasterwater Treatment plant for the City.)

26.  I am thankful for the mornings I wake up by Jacob coming in to cuddle with me. Even though he's a big boy now, he still loves his Momma, and still wants "Mommy time" to cuddle.

27.  I am thankful that God is the God of the impossible.  Without Him in my life, I wouldn't be here, and therefore neither would Jacob.  My son is a miracle.

28.  I am thankful for the people who read this blog, and who let me know that I in some small way have touched their lives.  Thank you for reading, and thank you for letting me be me, and loving me anyway!!

29.  I am thankful for all of you who have supported my jewelry business so faithfully.  I'm thankful for every. single. sale.  I'm hoping to continue to grow my business and bring Myasthenia Gravis into everyone's awareness as much as other, more "well-known" illnesses.

30.  I am thankful for all the ups and downs in life.  I am thankful that I understand I have to have SOME down times to appreciate the good times.  After all, it is only in the dark of night that you can see the stars.

Phhhhhhhhttttttttt!

Um, yeah.  That's me.  I am in a FUNK.  Serious-big-time-burst-into-tears-twelve-times-a-day-kind of funk.  It's not pretty.

I'm having a terrible time being thankful, which is pathetic, because I have tons of stuff to be thankful for.  I'm alive.  I shouldn't be.  I have a faithful, hard-working husband.  Not everyone does.  I have an amazing, crazy, wild, genius-miracle-child who I shouldn't have been able to carry.  I have a roof over my head and beautiful sunny yellow siding on my home.  I have food on my table.  Which many people don't.

And yet there's just this cloud.

Hanging over me.

I'm just sad.

So much loss.

I'm not consciously focusing on it, but there is a deep, overwhelming sense of loss. 

I wasn't going to post anything, but that's not being true to who I am, and I already tried NOT being true to who I am, and I couldn't handle it.  So this is me.  Flaws and all.  And I feel so flawed.  As a mom.  As a person. As a wife.

I know people love me.  I know God loves me.  I know, I know, I know.  But for some reason it just doesn't seem to be real right now.  Because I sit here.  Alone.  Wanting to be somewhere...anywhere but here.  With someone.  Anyone.  Well, ALMOST anyone.  If the Obama's called I'd have to decline.

I just feel like I'm reaching out to so many, and trying to give and give and give some more....and I'm getting shut down.  I reach out on a personal level to anyone locally, and I get shut down. 

The book club I was SO excited to be a part of....stopped contacting me because I couldn't make their first 2 meetings.  They changed the dates like 4 times.  The first month (August) I could go on the original date, but then they changed it to my son's birthday, because the man that used to teach history couldn't make the original date, and he is just so interesting and wonderful that they just hate to not have him there.

And how does that make ME feel?

Yup.

Less than.

Unimportant.

Without meaning.

And I know it shouldn't bother me that much.  But I've struggled with acceptance all my life.  And I really thought that I had found something I was really going to enjoy.

Then the second month (September) I couldn't go because I was sick on the SECOND date they chose.  The original date was fine.  I could have been there.  But then I got sick, and couldn't make the alternate date.  Then I never got any more emails.

That's what chronic illness has done to me.  It has robbed me of so many opportunities because people judge.  They automatically assume that I'm lazy, or a liar, or making things up, or being melodramatic....  The person who contacted me originally about this book group is a woman with a shop in town.  So when she SEES me, I look good, because it's a day I'm strong enough to go out.  But she doesn't get it.  No one who doesn't HAVE a chronic illness CAN "get it" no matter how hard they try.  But when people don't even try, it really ticks me off.

Anyway.  Enough whining.  I didn't bring any cheese to go with it, so I better stop.

Crowned By The King

I had the incredible opportunity to be part of an amazing ministry called "Crowned By The King" through Christian Women Affiliate.  I received a beautiful necklace....2 actually.  The way this ministry works is that you wear this necklace, and wait for an opportunity to give it away.  That's right, give it away.

The idea is that the crown reminds us that we are daughters of the King...crowned by Him, precious to Him, loved by Him, and important to Him.

When I was presented with this opportunity, the Lord immediately brought a friend of mine to mind. This is a friend I've never met in person, but is a sister in the Lord, and someone I cherish. My friend has had a very difficult year.  So difficult that she took a break from social media, and I didn't hear from her for a while.  Well, she's "back" and I'm so thankful she is!

There are different ways you can give away your crown.  One is to wear it all the time, and if someone compliments your beautiful necklace, and you feel prompted by the Lord, you give them the necklace, and tell them about the love of Christ!  You don't have to be an evangelist, you can use jewelry to spread the love of Jesus!  How cool is that?

The second way is the "need" opportunity.  Maybe you go to the same restaurant for breakfast every Saturday, and one day your normal server seems down.  Give them the necklace, and tell them about what it represents.

The third way, (and this is what I did, since I'm pretty much home-bound,) is to send it to a friend or family member that God lays on your heart.  I sent the necklace to my friend with a note telling her not only how much I care about her, but how precious she is to Our King.

This was her response:

"How can I begin to tell you what a blessing you are to me.  I so needed the message in the package you sent.  I needed the strength and the encouragement and the love that came in the mail....  I needed to know that you cared and that God cared enough to touch your heart for me.  He is amazing...and my Heavenly Father is still there for me.  I needed the reminder of His love.  It is easy to be too hard on myself through all this.  Just wanted you to know that I wore your necklace to church today and got lots of amazing comments on it.  Some day I will tell you my story, but for now, it is enough to know that you are there and that you care.  I hope it is enough for you to know that I do know God lives and that I know He loves each and every one of us.  We are truly His children.  

Thank you Kerri, you are an answer to prayer."

What an honor to be used as such a blessing to another.

I would SO encourage you to check this ministry out.  You can find them on facebook at https://www.facebook.com/crownedbytheking.

I am planning on buying more necklaces to send to some other friends and family, and I will treasure the one I have, and have a spare in my purse every time I go out!

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

This and That....and WHAT?

I'm trying to get caught up on bunches of stuff...But I really needed to catch up on my blog first.  I've been busy doing book reviews.  Love that!  I'm not really making a ton of jewelry since the craft show was such a bust.  I have over 200 pieces to put on my facebook page. (See bracelet on right sidebar if you want to go to my page.  Click there).

One of the things is that I'm super excited to be part of The Jammie Girl's "Share The Love" campaign.  She (Angie) is featuring a bunch of people who have their own businesses making hand-made things, and encouraging people to buy hand-made this year for Christmas!  And I have the honor of being one of those people.

I'm also being featured (along with a bunch of other people) for a week over at Today's Creative Blog starting tomorrow!  I'm so, so excited and hope and pray that this exposure gives me a little jump start for Christmas.  Business has been pretty slow (with the exception of 3 or 4 addicts "regulars").

So anyway, I would encourage you to check out those two blogs because they have SO many creative ideas and products for everyone.  Also, Angie, from The Jammie Girl, has written an e-book about cooking on a budget. You can find information about her book by clicking the picture under "Angie's Book"on the right sidebar of my blog as well.

Okay this is the WHAT??? 

On the news today, I saw that a Deputy for the Kalamazoo Sheriff's Department was seen in the parking lot of a bank, at 3 in the morning, drunk as a skunk, car running, door open, and she was passed out.  According to the law, if a vehicle is running, you can be charged with OUIL (basically driving drunk, up to a 0.17, because 0.18 is considered "super drunk").  So then, I hear that this OUIL is a MISDEMEANOR.  Here are some other misdemeanors:

Disorderly conduct
Urinating in public
Leaving the scene of an accident
Resisting Arrest
Prostitution (seriously??)
Possession of Marijuana
Negligent Homicide (WHAT???)
Reckless Driving (Nice.)

So.  Driving drunk isn't a felony until the THIRD offense.  That is UNACCEPTABLE!!!  My sister was killed by a drunk driver.  Who knows what his driving record was, but it probably wasn't the first time. 

AND because this woman who was found the other night was a DEPUTY, I think the penalty should be even stiffer!  Unreal. She probably won't even get suspended, let alone lose her job. Oh, and the best part?? She pleaded "not guilty." 

In my opinion, the first time should be the last time.  Lock em up.

Then this past week there was this guy who hit another vehicle while he was trashed, killed a 28 year old woman, a 2 year old and a 4 year old, and sent the dad to the hospital.  The drunk is in the hospital now, but when looking at his driving record, it was shown that this a-hole had had his driver's license suspended over TWENTY times.  WHY is this guy on the road at all??  And why is he not in jail???  He had to kill THREE people before he'll end up there??

WHY IS THIS OKAY????  I  mean seriously?  Why aren't people shouting for change?  I don't get it.  I simply do not get it.  Apparently in the state of Michigan, you can drive drunk and get your license suspended 20 or more times before you get locked up...and then it's probably for 4 or 5 months.  You have to KILL someone before anything serious happens to you.  Ridiculous.

I hope and pray that other people who read this get as pissed off as I am, and start writing letters. 

Please Welcome Guest Blogger Author Rhonda Rhea!

I am very, very pleased to bring you this guest post from Author Rhonda Rhea.  I am currently reading her book "How Many Lightbulbs Does It Take To Change A Person?" and will be doing a review on it in the next couple of weeks.  In the meantime, please enjoy this terrific article by Rhonda Rhea! Living in the Light/Dwelling in His Presence by Rhonda Rhea excerpt from Chapter 14 of: How Many Lightbulbs Does It Take to Change a Person?    I admit it, I’m a cruise fan. I love everything about it. Especially the food. A cruise and overeating go together like a hand in glove. Well more accurately, they go together like a size ten hand in a size two glove. All the gourmet food you can eat, for crying out loud! I guess I was just asking for a trip back to maternity pants. I now refer to myself as “17 years post-partum.” The staff on the ship said the average person gains seven to ten pounds on a seven-day cruise. But then, I’ve always considered myself an overachiever.   On prime rib night, my husband and I were walking out of the dining room and, even though he was about to let his belt out a notch, Richie said he was thinking of ordering yet another prime rib. Another one! I figured that could cost him at least another two belt notches. I told him I thought that would be a mistake.   Get it? Prime rib? “Mis-steak”?   Anytime we’re going to overdo, though, it’s good to make sure we’re “overdoing” in all the right areas. First Thessalonians 4:1 talks about living right to please God and then it says, “Now we ask you and urge you in the Lord Jesus to do this more and more.” To do and to overdo. It’s an encouragement to keep growing. Not so much growing in the “bring on the elastic waistbands” kind of growth. But growing in maturity.   We grow as we seek to stay in the light, dwelling in the presence of the Lord, making sure our lives are for Him and all about Him. Our growth is not an option. It’s a command. Verse 7 in that same passage in 1 Thessalonians says, “For God did not call us to be impure, but to live a holy life. Therefore, anyone who rejects this instruction does not reject a human being but God, the very God who gives you his Holy Spirit.”   Rejecting His instruction? Rejecting the Father Himself? Mistake of the highest order.   Growing in Him and dwelling in His presence results in a life in which growing “a notch or two” spiritually is a regular happening. The good kind of growth. And seeking that consistency in growth diligently.   There’s a lot at stake. Sometimes also a lot at steak.

Rhonda Rhea is a radio personality, humor columnist, conference/event speaker and author of eight books, including I’m Dreaming of Some White Chocolate, High Heels in High Places, and her newest, How Many Lightbulbs Does It Take to Change a Person? She is presently working on her ninth nonfiction book, scheduled to release in early 2013, and just this week got a yes from a publishing board on a two-book fiction deal co-authored with her daughter, Kaley Faith Rhea. Rhonda is a pastor’s wife and mother of five mostly grown children. She chuckles through the hubbub with pastor/hubby, Richie Rhea, near St. Louis in Troy, Missouri. Website: rhondarhea.com       About Rhonda's Latest Book: How Many Lightbulbs Does It Take to Change a Person?—Bright Ideas for Delightful Transformation (New Hope Publishers, 2012). Author and speaker, Patsy Clairmont, calls the book “high voltage humor along with a biblical charge.”   In Ephesians 1:18, Paul prays, “that the eyes of your heart may be enlightened.” One version calls it “light” that will “flood your hearts.” God shines so much of His light through Scripture so that we can see—we can have understanding.   For every person longing for a change, for everyone who is getting weary in a grisly struggle to make a particular change, God-given enlightenment makes possible real change in every way. Lasting change.   The God who is powerful enough to create light, then create the sun—the God who keeps the sun blazing and the stars and moon reflecting—that same God is powerful enough, caring enough, and detail-minded enough to light our way. He wants to show us the path of change, and He longs to light the way for us in His magnificent plan for our lives.   How Many Lightbulbs Does It Take to Change a Person is a laugh-along-the-way journey into that light through God’s Word. His Word? Now there’s some enlightening! And I hear enlightening has even been known to strike twice in the same place.

Random Letters Volume #726

(I really have no idea what volume this is, but just plain ol' "Random Letters" is so boring...)

Dear People Whom I Don't Know But Feel Free To Give Me Advice:

Just keep your mouth shut.  If you don't know me, you're not going to know what may or may not help me.  Your start-up company or aromatherapy or living juice topiary isn't going to cure me.  Whether YOU like to admit it or not, some things can't be fixed.  So please stop telling random strangers how to take care of themselves.  You have no IDEA what you're babbling about.

Sincerely,
Random Stranger


Dear 50.9% Of Americans:

Really?  Four years and 8.5 TRILLION dollars wasn't enough for you?  What's next? Standing in a bread line?

Sincerely,
Woman Who Obviously Voted for The Other Guy


Dear Governor of New York:

You banned restaurants from selling super-sized sodas.  Are. You. KIDDING. Me???  Do you honestly have nothing better to do in the entire state of New York??  Like fighting crime, or banning Other Really Dangerous Things like, say, merry-go-rounds?  I mean seriously.  I'm a freaking adult.  And some person, one man, who happens to have the power to do so, is going to tell me how much SODA I can or cannot consume?

Spare me the "America's the fattest country in the world and our children are obese" speech.  I don't deny facts.  However, if PARENTS across the country would be RESPONSIBLE for what their children shove into their mouths, we wouldn't have this issue.  And if I want to drink a 32 oz Diet Coke, who the hell are you to tell me I can't?  Last time I checked, this was STILL (albeit hanging-on-white-knuckled-by-the-seat-of-her-pants) the land of the FREE.  No one is holding a gun to anyone's head forcing them to eat that 20 piece nugget as an appetizer to their 4-Big-Mac, 1/2 pound of fries meal.

Government control is bad enough.  Don't tell me what I can drink, for crying out loud.

Sincerely,
Someone Who Doesn't Really Drink Much Soda But Doesn't Like Being Told What To Do

Whew!

I am one tired girl.

Trying to get over being sick.

Went out shooting yesterday afternoon...It was awesome, but I'm paying for it.

Taking pictures and pictures and more pictures of allllllll the stuff we brought to the craft show, and back home again!

Set of 6 wine glass rings, sea shore motif $15.00

I've gotten all the wine glass ring sets, wine bottle ties, book marks, key fobs, and cell phone accessories posted. 

All that's left is a bunch of Pandora style stuff, and almost 150 pendants on chains.  Mmmmm-hm.  I said 150.  That's how many we had, and we sold maybe 5.

Cell phone lanyard and dust plug $5.00

Anyway, you can check out all the stuff I put on my facebook page by clicking HERE.

Total bust. 

Doing book reviews.

Have to catch up on my pen pals.

Have 2 CBI lessons to do.

Doug was off work today, so that was nice.

Have some jewelry orders to pack and ship out. YAY!!

Have to call the pharmacy yet to call in some refills.

Tired.

AND of course last night I didn't fall asleep til 3:30 AM.  Today I think it will be more like 9:30!!

Sickness Be GONE!

So I'm a little irritated.  I had a counseling appointment in Kalamazoo on Monday.  I get there, and I hear her talking, and she sounds kind of strange.  I see the receptionist backing away from her and telling her to keep the pen she's using.  I'm like, OH great.

I ask her jokingly not to breathe on me.  Doug and Jacob have already gone; they drop me off and then run errands.  Kalamazoo isn't just around the corner from me...and my ride was gone, so I'm like, whatever.

She DID put on a mask for our session, but like that really did any good?  I mean, she had been in the little tiny room with no windows open all day long...  I should have just left.

And then voting last night...Oh my gosh. OH. MY. GOSH.  I was terrified.  The Township I live in probably has about 700 living beings, if you count the sheep.  Well, everyone showed up when I was there (except the sheep).  Talk about the unwashed masses.  EW!

I stood contemplating which little voting booth was the LEAST contaminated, and which was the worst.  The one I figured to be the worst (don't ask me how..) opens up just as it's my turn to go.  Thankfully, just as I was contemplating whether to just bolt out of the overcrowded room getting ready to step forward,  I hear, "Ma'am?  Ma'am?" 

I turn, and see an elderly woman glowing like an angel motion to me, and say, "There's a place in the back you can vote."  I point to myself, and I'm like, "Me?"

She's like, "Yes, last room on the right."  Well, it was the last room on the left, but whatever! (Some grumpy dude was in the last room on the right!)  So I got to sit at a little table, use a pencil that only 20 people had used instead of 200, and didn't have to be in a claustrophobic little booth where millions of germs had been breathed before....

She HAD to be an angel.  Why, at that time, after I had been standing in line for 25 minutes, had she done that?  ANSWERED PRAYER, that's what.

The Everyday Matters Bible For Women: You Need To Read This!!

The Everyday Matters Bible For Women is an amazing tool for spiritual growth.  This is the first Bible I've owned that is in the New Living Translation. While it's not what I'm used to, I've found it to be a nice change.  This Bible is put together so well, and it's very user-friendly.

Today's woman doesn't necessarily have 2 hours a day to study the Word.  The Everyday Matters Bible has "disciplines" that help you to study in an effective, concise way, and still learn so much!  

Every discipline is explored in four ways 
• Everyday Matters. Two-page articles introduce major themes and focus on an essential part of understanding and practicing a discipline.
• Everyday Profiles. Profiles of twenty-five Biblical women highlight a particular discipline.
• Everyday Q & A’s. Short articles delve into a difficult aspect of the spiritual practice and offer practical help on incorporating the discipline into your daily life.
• Everyday Reflections. Selections illustrate ways to personalize and apply God’s Word to your own situation.
More than 300 articles and features by more than 140 of today’s most well-known Christian leaders and writers, including: Kay Warren, Priscilla Shirer, Elisa Morgan, Nancy & John Ortberg, Richard Foster, Liz Curtis Higgs, and Lauren Winner.
Special Features include . . . 
• 4-color throughout
• Color-coded icons identify each Spiritual Discipline addressed in contributors’ material
• How to Use This Bible in a Small Group Study
• Index of Spiritual Practices
• Resources for further reading

I chose the discipline of Acceptance.  First because I'm completely OCD and have to do things in alphabetical order (I know!), and second because I really do struggle with feeling accepted.  I found studying this discipline to be easy, efficient, and very, very meaningful.  Some of the contributions brought me to tears.  All of them taught me something.  

For example, after reading the Everyday Matters Article under Acceptance, (called "Guard Your Calling" by John Ortberg) I wrote, "I have been chosen.  By God.  And gifted.  To minister to others and influence my world.  Don't be preoccupied by the call, but by the Caller."  This was one of the notes I made that summarized what John Ortberg was saying, and what stuck out in my mind at the time I was reading it. (I have a notebook out while I'm studying so I can take notes.  I remember SO much more if I write it down.)

I would recommend this Bible to any woman.  The New Living Translation lends itself to easy reading and understanding.  The index in the back of this Bible, listing all the disciplines, is a terrific place to start studying.

If you are interested in this Bible, there are links below that can help.  You will not be disappointed!


Everyday Matters Bible for Women, New Living Translation, 2nd Edition, Hardcover is AVAILABLE NATIONWIDE in bookstores and major retailers for $27.49.  Purchase online at: Amazon, Christianbook.com, or at your local retailers. 

For more information about the Everyday Matters Bible for Women, check these out:

Everyday Matters on Publisher's website:  http://www.hendrickson.com
Everyday Matters on Facebook:   
http://www.facebook.com/EverydayMattersBible
NEW ACCOUNT on TWITTER:   
https://twitter.com/bibleforwomen

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