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!