My Creation

Okay, before I post this I have a disclaimer.  Several, probably.   I am NOT a seamstress.  I do not have a sewing machine.  I can sew a button on, and that's about it.  I do not hem, and I never took 6th grade sewing class.

That being said, my office needed a new curtain, and I decided I was going to make one.  I mean, how hard can it be, right?  It's a slab of fabric on a curtain rod.

So I went to the local 5&10, (geez, color me Laura Ingalls) to look at fabric.  After digging through piles of neatly stacked material which I barely dared to touch, I found the pattern I liked.  So thankfully (for me anyway), there was a very sweet store employee who was setting up (gack!) a Christmas display right near the sewing section. So I was like, "um, 'scuse me, I have a few questions... this says binding tape but it's not really tape, is it?"  (I'm not sure if it said Binding tape, but it said some kind of tape, and I do know there was nothing sticky about it.)

She said no, that's what you can wrap around the edges of your project for a finished touch.  I'm like, would that require more sewing, and she's like, yah.  So I passed on the non-sticky tape.

However, she told me I'd want a backing to my curtain so that the sun didn't bleach through. Huh?  So I found this plain, kind of off-white thicker material that they had juuuuust enough of.  Bought thread, a gabillion-pack of needles, straight pins, and off I went.

So I measured and cut, and measured some more, made my nice chalk lines against Doug's square (which isn't square at all, it's only got two sides!), pinned everything together, and was ready to sew.
Or so I thought.

All nice and pinned, the backing and everything...Then....

I turned it around to do the bottom hem, and....it all came undone.  UG.

So after hundreds of straight pins (and seeing what I'll look like without teeth!)

A LOT of hard work, time, sweat, no tears tho.....

At the very end, I put the EYE end of the needle through my finger...bent the needle

This was from before...so if anyone ever needs a DNA sample, they can use my curtain...

But...I DID IT!!!

I even hung it up myself and everything.  Doug had to put the actual curtain rod up, but I put it up, it blocks the heat form the sun, it hangs mostly straight, and it's CUTE!  I will never, ever, ever do it again, but I like it!  Every. single. stitch. done by hand.

I love my curtain!!

Twelve Years

Today is my 12th wedding anniversary.  I should say marriage anniversary, because yesterday was my 11 year WEDDING annivesary.  See, I married Doug twice.  We got married on August 26, 2000, 12 days after I had to quit my job because I was too sick to work anymore.  Our ORIGINAL wedding date was February 10, 2001, but for financial reasons, and because we KNEW we were ready, we decided to make it legal sooner.

We called our pastor at the time, a couple of friends, and my mom and dad, and went to the church on that Saturday morning to get hitched.  I remember Doug had to put my hair up because I couldn't hold my arms up.  It was a brief, legal ceremony, and then we went out to lunch.

In September I had lots of tests, and went on oxygen 24/7.  On October 13, 2000, 47 days after Doug and I said "I do," I went into the hospital for an MRI and quit breathing.  On October 17, four days later, I was in a helicopter, intubated, sedated, and on my way to the U of M so they could try to save my life.

Needless to say our original wedding date in February wasn't going to happen.  I remember being in the hospital writing notes to my mom about the wedding...when I was coherent, that's all I could think about.  Everything was planned....

Then MG came and ruined everything.  Except my marriage.

Who would stay with someone who went into the hospital 47 days after they got married to a woman who was now on a vent, not knowing if she would live or die, or even be a vegetable?  Who stays through that? 

Doug did.

Who drives to a hospital 150 miles away every 5 days, (and we had a HORRIBLE winter that year...SO much snow) sleeping in the hospital hotel 3 nights, just to sit by a woman he just married, who didn't even know he was there part of the time?  Who does that?

Doug did.

Who stays with a brand-new wife when she's sleeping on a hospital bed in the living room of their home, and sleeps on the couch to suction her trach during the night because she can't do it for herself?  Who does that, for SIX MONTHS?

Doug did.

Who stays in a marriage when there haven't yet been any "honeymoon" times, or fun celebrations, or spontaneous trips because his wife is too sick to do any of those things?  Who does that?  Who picks a Saturday in August, one day before our first anniversary, to have the big wedding his wife always wanted?  Who?

Doug did.

Who has stayed in sickness and in health, for richer or poorer, MG or not, through weight gain and mood swings, anxiety attacks and irrational behavior?  Who chose to honor his vows when it would have been so much easier to walk away, saying, "I didn't sign up for this!"

Who chose to stay?

Doug did.

And I thank God EVERY day that he did.  My husband is an amazing man.  Part MacGuyver, part Daniel Boone, ALL love. REAL love.  Dedication.  Commitment.  Responsibility.  Faithfulness. Love walked through every day.

My husband has done more for me in the last 12 years than anyone I know could have.  Sure we have our ups and downs, but I would be lost without him.  He IS love in action. 

So Happy 12th Anniversary my dear husband.  You are the backbone of my life.  I couldn't do this without you.  And I'm so thankful I've never had to.  I love you more today than yesterday, but not as much as I'll love you tomorrow.

"I"

I shout....

But no one hears.

I run......

But go nowhere.

I look......

But no one is there.

I try.....

But it just doesn't happen.

I'm here.....

But what am I doing?

I cry.....

But it doesn't seem to help.

I pray.....

But I'm told "Not now."

I trust....

But it's so hard.

30 Things You May Not Know About My Invisible Illness

This is a meme from Rest Ministries for Invisible Illness Week which is coming up in September.  You can go here to read about other people who live with chronic, invisible illnesses, and also get support if YOU have an invisible illness.

1. The[main] illness I live with is:  Myasthenia Gravis
2. I was diagnosed with it in the year:  2003
3. But I had symptoms since:   1995
4. The biggest adjustment I’ve had to make is:  depending on other people for SO much.  I HATE not being independent, and it's really tough to lose that.
5. Most people assume:  I've just lazy because I'm overweight, and if I lost weight I would be healthy.
6. The hardest part about mornings are:  If I have to go anywhere.  It takes me FOREVER to get ready.  I have to do my nebulizer for my trach, clean the trach, (have coffee first, of course!) pack my suction machine, and of course do hair and make-up.  It's usually a 2 hour process. Ug.
7. My favorite medical TV show is:   House.  But it's over. Boo-hoo!
8. A gadget I couldn’t live without is:  My computer!!!!
9. The hardest part about nights are:  Sleeping.  I have a vent now, so I can FINALLY sleep on my back again (still propped up and on a wedge).  But because I don't have a cuffed trach, I have to wear a band around my neck that's not very comfortable.  Otherwise, if I sleep without the vent, I have to sleep on my sides, and I have arthritis in my hips, so it's usually painful.
10. Each day I take FORTY-THREE (43)  pills & vitamins. (No comments, please)
11. Regarding alternative treatments I:  don't have much to say.  I've tried what I've tried and nothing has helped, unless you consider going to the chiropractor "alternative."
12. If I had to choose between an invisible illness or visible I would choose:  Visible.  I'm sick of being judged.  I don't want pity either, but people see me, and because I have my hair not a total mess and I have make-up on, I must be fine.
13. Regarding working and career:  I had to quit the job I loved more than any other job I've ever had because I couldn't speak clearly on the phone, and no one could understand me.  I also wasn't sleeping, and I couldn't hold up head up. I had to prop it up with my chin on my hand, elbow on the table or counter.  I tried going back to work for 12 hours a week (different place), then 8, then 4. Couldn't do it.
14. People would be surprised to know:  how much crap I have to take with me if I go somewhere overnight. Whether I'm going for one night or one month, it's basically the same.
15. The hardest thing to accept about my new reality has been:  Not being able to be spontaneous, to just jump in the car and run to the store, or just grab a toothbrush and change of clothes and go somewhere overnight.  I feel isolated and imprisoned.
16. Something I never thought I could do with my illness that I did was:  Have my beautiful boy!!!
17. The commercials about my illness:  don't exist
18. Something I really miss doing since I was diagnosed is:  Singing.  I miss it every. single. day.
19. It was really hard to have to give up:  My job.
20. A new hobby I have taken up since my diagnosis is: making jewelry.
21. If I could have one day of feeling normal again I would:  get in the car and just GO.  Go shopping, go to a movie (because I wouldn't have to worry about germs), sing my fool head off, go swimming (can't with the trach)....I'd be up 24 hours just being me and doing things I love.
22. My illness has taught me:  Who my true friends are.
23. Want to know a secret? One thing people say that gets under my skin is:  "You look great!"
24. But I love it when people:  Ask me how I'm doing, and REALLY want to know the truth.
25. My favorite motto, scripture, quote that gets me through tough times is: "My flesh and my heart fail; But God is the strength of my heart and my portion forever." Psalm 73:26
26. When someone is diagnosed I’d like to tell them:  It's not a death sentence.  It WILL change your life, but you can still have a GOOD life.  Just a different one.
27. Something that has surprised me about living with an illness is:  How isolating it is.
28. The nicest thing someone did for me when I wasn’t feeling well was:  Came over and cleaned my house, AND brought several meals (thanks Karen and Kerry!)
29. I’m involved with Invisible Illness Week because:  I want people to UNDERSTAND invisible illness, the stigma, the isolation, and the emotional toil having a chronic illness takes on me and my family.
30. The fact that you read this list makes me feel: Like I matter.

Random Letters Volume 459

Okay, so who knows what volume it is, what difference does it make?  Sounds better than just "More Random Letters." 


Dear Krazy Glue,

You show a dude hanging from an I beam by his hard hat, yet your product won't adhere the top of a puzzle piece to the rest of the puzzle piece (you know, the picture part starts peeling up from the cardboard part?).  I am highly confused, and more than a little irritated.  IF, in fact, your product can hold a man up, of average weight, maybe 150 pounds, please explain to me why it cannot hold paper together.

Sincerely,
Krazyily Konfused

P.S.  You really should review your spelling



Dear United Airlines,

My elderly parents (sorry, mom and dad, you ARE 73) flew out to California on your airline.  They got to the airport an extra hour early because they didn't have their seat assignments yet.  My parents are zealous when it comes to airport protocol, so they got there prior to "on time."

Their flight was originally supposed to leave at 7:50 AM EST.  It was delayed due to a mechanical failure...always a wonderful concept; getting on a plane that was JUST fixed.

It was delayed again.  And again.  Eventually, your airline told my elderly parents that they would be BUSSED to Chicago's O'Hare Airport.  Not flown, bussed.  As in, not a 45 minute trip, but a 3+ hour trip.  The bus left Grand Rapids and got to Chicago at 4:00PM CST.  At this time, my parents had been up for over 12 hours, and should have already been at their destination in California. 

However, their NEW flight out of O'Hare didn't leave until 8:40 PM CST, which put them at their destination at 2:00 AM PST.  So for those of you who do math as well as you treat your passengers, my 73 year old parents were up for over 24 hours, traveling.  My father is not in terrific health, and it took him days to recover.

Your advertising slogans are: 

                              It's time to fly.  Um, not according to this performance.

                              Life is a journey, travel it well.  I'm not sure they traveled it well, but you sent my parents on a journey alright.  A journey from hell!

                              Fly the friendly skies of United.  I'm sure they would have preferred this to driving the pothole-filled, construction-laden, traffic-jam-ridden highway on a BUS.

Shame on you, United Airlines.  This debacle will go further than just this blog, I guarantee you that.  Your treatment of passengers is disgraceful, and your airplanes are obviously not up to par.  I hope and pray that no one else I love chooses your airline. 

And ya might want to reconsider those slogans.  May the fleas of a thousand camels infest your armpits.

Most Abhorrently Yours,
Daughter of Two Sweet, Wonderful, TIRED, Elderly Parents


Dear MG,

I hate you.  I loathe you.  You bring seething rage to every cell in my body.  You are like the devil: you kill, steal and destroy. 

You have killed my dreams.

You have stolen my freedom.

You have destroyed my independence.

You have taken, and taken, and taken some more. 

There is not much more I have to give.

So go back to hell where you belong and LEAVE.  ME.  ALONE!!!

Warning: NOT A Pretty Sight

So this is me 2 nights ago right before bed.  I realized (thanks to my dear friend Karen) that I always have my eyebrows raised to try to keep my eyes looking "normal".  So, I completely relaxed my face, "a naturale", and here I am.  AAAHHHH!  And my hair...yikes!  I've been too tired to wash it, so it's in the permanent "up" position.  Yikes.

I couldn't BELIEVE how bad it was!  I'm so droopy!  As some of you know, I have not been feeling well for the last week or so.  But now I've got this super tired, dizzy-light-headed thing going on.  I really don't know what my neuro would do; it's not like he really KNOWS me.  Probably order more pheresis, but my veins can only take so much.  I have a treatment scheduled for the 28th.

It's just weird.  I hate this disease.  Up and down, up and down.  I'm basically doing as "nothing" as possible, but it's hard.  I want to vacuum, there's laundry that needs to be done...I did manage a few dishes today.  But if I stand for too long I get dizzy.  And it's so hard on Jacob.  That's what's really been getting me down.  I totally snapped at him today, but he was driving me crazy! He's SO loud, and SO busy, and I'm just SO exhausted and MG-ish.... I have to be EVERYTHING to him... mom, teacher, friend, psychologist, nurse, playmate, nutritionist, cook....the list goes on forever.  And I just. can't. do. it.

I think this is just a "crash" that was a long time coming.  I was too busy for too long, pushing my limits, overstepping my physical boundaries, and it finally caught up to me.  At least I'm sleeping at night!!

Anywho.  Please remember me, and all my MG friends in your prayers.  We REALLY need to find a cure.  Thanks.

Sunday Afternoon MeMe

Okay, so if you've never participate in a MeMe it's very simple.  I ask questions, answer them, and then YOU answer them as well.  You can do so in the comment section, or, if you blog, copy the questions to YOUR blog, post your OWN answers, and them make sure you come back here and let me know so I can check it out.

Easy as pie!  Here we go:


1.  What's your all-time favorite band or song?
      I would have to say Foreigner.  Juke Box Hero to be specific.

2.  How many siblings do you have?
     I was the youngest of FIVE.  (IIIII know!)  My next oldest sister, Michelle was killed in a car wreck when I was 16, she was 18.  Oldest sister Deb, then brother Mike, then sister Lori.

3.  What is your favorite color?
       PURPLE of course!

4.  If you could be any historical figure, past or present, who would you be?
      Maybe Abraham Lincoln.  I mean, not that I want to be assassinated or anything, but he was part of something SO huge....He changed history in such an amazing and positive way.  I would love to do that...to leave my mark in such a powerful way.

5.  If you could spend the day with any historical figure past or present, who would it be?
      Easy-peasy.  Jesus.

Now it's your turn!

To Jacob on His 6th Birthday

Dear Jacob,

I can't believe it has been 6 years since you came into my life.  I remember every detail of your life.  I took 100 pictures a day, I think, because I didn't want to forget one second.  Every outfit.  Every movement.  Every smile.  Every landmark moment.

I remember silly things, like how every time I made you laugh you got the hiccups.  I remember difficult things, like how hard it was to burp you, and how Mommy's arms just couldn't hold up.
I remember wonderful things....like holding you while you napped, and just staring into your precious, beautiful, angelic face, and seeing the miracle of you.

It was hard getting you here.  Mommy was very, very weak during almost her whole pregnancy.  But it didn't matter.  I loved having you grow inside me.  I got to watch you grow on the inside because Mommy had lots and lots of ultrasounds.  I could even see your chubby cheeks on the ultrasound at 20 weeks!

There are so many things I want for you;  I don't know where to begin.  I guess most importantly I want you to know that I love you to the moon and back.  You are my heart.  You give me joy. Your smile lights up the darkest day.  I want you to grow up and be a man of character and integrity.  Remember that.  There is NOTHING more important.  Be a man of your word.  Love God first.  Always.

There will be times in life when you feel all alone, and maybe even a little scared. That's okay.  God is with you. He will never leave you.  Not ever.  He will comfort you and be with you all the days of your life.  Live for Him first.  Everything else will fall into place.

Mommy wants nothing more than for you to be happy.  I will do whatever I can to make that happen. You are such a precious gift to me.  You are a MIRACLE.  Mommy never thought in a million years that I could do what I did when I had you.  God wanted YOU to be born.  Not any other child that Mommy and Daddy could have created, but YOU.

You can do anything with God on your side.  Remember that.  I love you with all of my heart and then some.  You are the most precious, priceless child.  I thank God for you every day, and pray that you will grow up strong, healthy, and that you will love God as long as you live.

To my very special precious boy:  I love you.  And Happy, Happy Birthday.
Love
Mommy  

Starting the House

First of all, millions of thanks to those who helped us raise money and donated to our GiveForward account or sent checks.  You have no idea how much you have helped my family.  Here are a few of the "before" shots.  YIKES!!

Starting to rip off the old, nasty, wood siding.

Crumbling foundation, rotting wood.  This project is happening in the nick of time if you ask me!

The reason I go insane.  My hubby MUST do everything himself.  Can't wait for helpers!

Blowing bubbles for Blackie to snap.  HAD to put a picture of my baby in here!

Will post as we go.  There were so many gaps in the wood, and so much dirt and dust... The new siding will be SO MUCH healthier for me....I can't thank you all enough.  Much love.

Jacob's Party

This was actually last, but blogger messed it up.  Jacob has always wanted a pinata! (Tried a golf club first)

 

 

 

 

 

Then we tried a snowbrush.  Which broke.

The fatal blow.... (back to the golf club)

Finally!  The "goods!" (It took him a good 5 minutes to knock the stuffing out of it).

I guess it wasn't quite dead yet....

Victory!

Mommy, Jacob and Daddy right before opening presents

We had a Kung Fu Panda 2 theme. So yes, this is supposed to be Kung Fu Panda. (I'll stick to jewelry)

Diggin' in!

Very captivated by this book!

Whoa, everything is HUGE!

My big boy. {sigh}

My Favorite Olympic Moment

http://www.mamakatslosinit.com

I'm hookin' up with Mama Kat's pretty much world famous writer's workshop today....Because I could NOT let the opportunity pass.  One of the prompts asked about our favorite moment of the Olympics so far.

Hands down, it was when I first saw Oscar Pistorius from South Africa.

This man was born with a defective gene that forced him to be a double amputee.  I'm not sure exactly how much of "his" leg he has, but that's not the point.  This man, who does not have "normal," working legs, ran the 400m sprint against able bodied men who have been training all their lives for this one moment.  Oscar had to get special permission from the Olympic Committee just to get IN the qualifiers.  And he did.  And he made it to the semi-finals.  That was his goal, and he made it.

And as a human being, this picture sums up what he is made of.  The man has character in spades.  He is AMAZING.

So let me encourage you, as Oscar Pistorius has encouraged me.  I have Myasthenia Gravis.  There are many limitations that come with that disease.  There are many things that I cannot do.

But there are many things I CAN do.  And this man, this hero, reminded me that "normal" is just a word.  It means NOTHING.  Nada.  Zip.  Zilch.

Be who YOU are.  Be the BEST YOU you can be.  Don't let limitations stop you.  There are people sicker than me, healthier than me, poorer than me, richer than me, skinnier than me, heavier than me... The list can go on and on.  My point is that NONE of that matters.  You are YOU.  And that's exactly who you are supposed to be.

That is who God intended you to be.  So we need to stop making excuses and be the BEST we can be.  Thank you Oscar, for showing the world your courage, your skill, and your character.  You are the stuff that heroes are made of.

Shopping for Back-To-School Shoes

This is a Sponsored post written by me on behalf of Famous Footwear for SocialSpark. All opinions are 100% mine.

I can hardly believe it's that time already...back-to-school.  For us, it means a trip to the dining room for homeschool, but that doesn't mean we don't need the same back-to-school supplies as kids who GO to school.  Particularly shoes!  Jacob has grown so much in the last couple of years.  He's growing out of everything, including his shoes!

Famous Footwear is one-stop shopping for all your back-to-school kid's shoes, and while you're there, you can buy a pair or two for yourself!  They are advertising that you can get 3 pairs of shoes, in their store, in 20 minutes.  Now that's a victory!  And as we all know, when shopping with kids, we need all the victories we can get! 

Famous Footwear has an awesome back-to-school special right now.  You can print this coupon for 15% off (20% off if you are a Rewards member). BOGO + 15% off Famous Footwear Coupon   Make sure you print the coupon right away because it expires 08/18/2012.  Notice it has a limit of 21 pairs of shoes!

Signing up to become a Rewards member is super easy.  I just did it, and it took about 3 minutes.  It's a great program too.  For every dollar you spend, you get one Reward point.  Then, every time you hit 100 points, you get $5.00 off your next purchase. You should definitely sign up. (You even get points right away just for signing up!) Take advantage of every penny you can save!

Famous Footwear also has a BOGO right now...Buy One get One at Half Price.  You may not use both coupons on the same pair of shoes, but if you have 3 kids, you are saving big time!  And this coupon as well has a limit of 21 pairs of shoes.  I actually know a family that has 11 kids, so this would be an awesome deal for them!

You can go to www.famous.com to find the store located closest to you, or you can order and use your coupons online.  Happy shopping!

 

Losing What's Left Of My Mind!

Good grief!  I'm tellin' ya.

I have been out of my mind busy.  Doug has decided he didn't feel like waiting for any help (from Love INC) to start the house.  Now he's got the siding from 2 sides of the house ripped off, built a box around the brick chimney, and is or has repaired boards.  But, he's not ready to Tyvek it yet.  So if it rains......  UG.

In the meantime, I've been doing doing doing.  Laundry, dishes, bills...oh, wait a minute, I do all that anyway!

In all fairness, Doug cooks supper most days.  But the house is in utter chaos...it needs to be cleaned, the office is a wreck (still)...I'm in the process of switching most of my bill pay stuff from one bank to another (yeah, that's a riot)...

Got lots of sick MG friends...I have 3 penpal letters to write (through Christian Pen Pals....you should check them out....there are hundreds, if not thousands of inmates waiting for a Christian penpal...), plus I've got 3 CBI letters to write to send off my lessons (Crossroad Bible Institute... same thing, you should check them out. They do inmate Bible studies and need people to correct them... Go to http://www.crossroadbible.org/ and see if you can help!)

So there's that, then jewelry to make, a business to run...doctor appointments (had 2 yesterday, went by myself)...Doug's been hammering on the house for 2 days....I'm about to lose my mind....what's left of it.  I've got a book review to write....and the list goes on.... Oh, yeah, sorted 4 loads of laundry this morning...I think I'm on load 3. Yah, like THAT'S getting folded today!  Not so much.

AND we have a meeting with Love INC in 2 hours. 

Calgon take me away!!!!!!!!!!!!!!!!

TERRIBLE

Gosh, I have been TERRIBLE about posting...but there have been so many TERRIBLE things going on!

First a wonderful thing:  August 1st was my wonderful hubby's birthday, and we had a really nice day.

But that's where all the shiny happy crap stops.  SO many of my MG friends are having BIG troubles.  One needs IViG desperately, and the hospital is telling her that they can't get any for at least 7-10 days.  For a myasthenic, not having your treatment when it is due can do many horrible, TERRIBLE things to your body.  PLEASE pray for my friend Suzi, (who happens to also have a trach) that her body holds up...but I'm specifically praying that the IViG comes in tomorrow.

Then there's my dear friend Karen in California who is in the ICU, on FIVE different IV antibiotics.  She is very sick, and in pain.  She went into the hospital via ambulance I think Friday, and has sepsis. PLEASE pray for the docs to find something that kills all her infections, without killing her!  Most of all I am praying that God will simply heal her of all these things coming into her body that DO NOT belong!

There are so many others....too many to mention, really, but please just pray for my dear MG community...so many are struggling physically, emotionally, financially...this disease never. takes. a. day. off. 

It's so frustrating and scary and unfair.

And to my MG family:  HANG IN THERE!!! You are stronger than you think.  You are tougher than you feel.  You can do this. Fight hard, because there are people who love and need you.  Fight hard, because this world is a better place because YOU are here.