Thursday, May 31, 2012

Did Anyone Get the Number of That Bus?

Okay.  Had my first pheresis yesterday in 2 months.  First, let's get a big hoo-rah for making it 2 months!!!  AND I WALKED all the way to the out-patient department from the parking ramp.  I have NEVER. BEEN. ABLE. TO. DO. THAT.  Whoo!

But this morning....oh my word.  I can't type straight, I can't read straight, I can't hardly function.   And Jacob is MORE than full of it today.  Oh the joy of chronic illness.

Be prepared, tomorrow stats June, and National Myasthenia Gravis Awareness Month!
That's all I can manage for now. Love to you all!

Wednesday, May 30, 2012

Some More Jacob Pics

I just adore my child. And I only have one, so I take about 100,000 pictures of him!  Anyway, here are a couple of my favorites:

Standing in front of the playhouse he and Daddy built.  (It's for sale, by the way.)

One of his many fighter/guard/pirate/cowboy/swordfighter outfits.

This child could LIVE in the sand.  It was cold, but he built this GINORMOUS sand castle.  Complete with moat.

Monday, May 28, 2012

Super Glue and Super Blasters

So we had a visitation to go to last Monday.  Jacob got to go to see a "REAL" soccer game, because he went to Miss Lori and Mr. Steve's house, and their daughter had a soccer game.  They watched Jacob for us so we could go to the funeral home.  I didn't want to explain the open casket, etc., when he knows that people go to heaven...but then seeing the person in there.....Plus, he's 5 1/2...who needs that much reality at 5?? I posted previously, Jacob was the recipient of a GINORMOUS nerf dart gun.  Well.  The other night, Doug was messing around (as usual....seriously, I have 2 children), and shooting Jacob, and Jacob was shooting back.  I was clear across the room cleaning my trach.  Now, cleaning my trach requires the sticking of Q-tips into the trach tube to clean it out.  Yup.

So I glance up at the shrieking and howling utterances of pure joy from my two boys, and see Doug taking aim at me.  Three words:  "Don't. You. Dare."

Well I might as well have said "fire when ready", because he PULLED THE TRIGGER, and a nerf dart flew 20 feet and nailed me right in the neck.  About 1/2 inch from my trach.  Oh. My. Gosh.  I was ready to bludgeon him.  It left a mark and everything.  Ug.

Then, two days ago I was trying to make this gorgeous necklace by gluing a bead cap/bail on the end of a smoky quartz tumbled rock that we tumbled and polished ourselves...It was going to be SO beautiful.  Well, the first step requires gluing in a headpin to make a loop for the chain to go through so you can make a necklace.  (Think of a very thin long straight pin.) So I put the glue in there, put the headpin in, and all of the sudden, I've got 3 fingers stuck together.  And I mean STUCK.

Doug and Jacob were gone, so it was just me and the dogs.  I couldn't really call anyone for help because I only had one hand....can't hold the phone, dial, talk, etc. with just one hand.  So I used about 1/2 bottle of nail polish remover because I had no idea where the paint thinner was, and I was determined to fix this myself.  Mmmm-hm.

About 30 minutes later, half stoned from acetone fumes, I am finally free from the dreaded headpin and have all my digits, including all their skin!  I still had superglue on my fingertips though (briefly concluded that if I committed a crime that day I wouldn't leave fingerprints....) but there again, like I have the cajones to commit a crime.  I'd probably pee my pants.  Wait, I do that anyway with the MG...

Anywho.  About 17 washes and scrubs with Lava soap and I was mostly glue free.  And so it goes....

What have YOU been up to??

Friday, May 25, 2012

Garage Sale: Psycho Lady!!!

Okay.  Before I begin, I will tell you that I am not making fun of any TYPE of person.  I am both short in statue and....fluffy. So when I describe the people in this story, do not take offense if you are either, because I am too.

As we begin our story, there is a lovely couple shopping at the garage sale.  I can't remember if their arms were yet full of items, or if it was before the selection process actually began.  So all of the sudden, this tiny woman, maybe 4'11", and very slight, (I mean, thin-as-a-rail, I'm-so-jealous-I-could-spit slight) starts jumping up and down yelling "I have to go!  I have an emergency!  Someone pulled in behind me!  I have an emergency!  I have to go!"

So the only other customers were obviously pulled in behind the woman with the emergency. She  immediately starts walking up the hill to the car to move it.  Now, we have a steep driveway.  I mean steep.  It's not like a walk in the park unless you're a fit, healthy person.  So us fluffy girls, it takes a minute!

In the meantime, Slight Woman becomes more and more agitated.  "I have an emergency!  I have to go!  I have to go!  I need someone to move their car!!"

So all of the sudden, I see Slight Woman turn around by driving through our grass almost into the lilac bushes (and you do NOT mess with my lilacs!), spins out of the gravel driveway and burns rubber down the street.

So the original customer returns to the sale, face red, looking very angry.  I hear, "That psycho just hit my car!"  I was like WHAT?!?!?!  And she was like, "She hit my car!  She backed right into me, and I got out and  told her and she said, 'I didn't hurt anything' and tried leaving again!" (I'm assuming this is when she turned around and spun out in my yard.)

Apparently, Slight Woman had cut off Fluffy Lady to pull in the driveway in the first place, so if she hadn't, all the drama could have been avoided. {Sigh.}  So my dear customer continues shopping, and as she peruses the coffee mugs, she picks one up and without missing a beat says, "That woman needs this mug: 'JUMPY: The Stressed Out Dwarf!'"

{Oh yes she did!}

Oy. What an odd day.  Matter of fact, the more I thought about it, the more I wondered if the Slight Woman isn't the turkey-stalking-dog owner from this story.  I guess I'll never know...the lady did say Slight Woman had about 6 dogs in her car.... Could it be....?

Gotta git for now....last day of the sale.  The "Doug-shooting-me-in-the-neck" story will have to wait til tomorrow. Happy Friday!

Thursday, May 24, 2012

Garage Sales!! AHHHHH

I do not know why I do things sometimes.  Like have garage sales with no help besides Doug.  I mean, we help each other, obviously, and he has to do all the HARD work, like moving everything out, but I price almost everything, and I'm out there allllll day. 

Yesterday was HOT.  And I'm not so crazy about the heat.  Neither is my MG.  It got to about 90, and today is supposed to be hotter.  And I'm sittin' in a garage.  Whoo-to the Hoo!  I have a little fan, and today I'm parking my butt right in front of it.  If it gets TOO bad I'll have to come in for a while.

Jacob was a trooper yesterday.  We started on Wednesday from 3-9PM.  Figured the working class might like first digs at a garage sale for once.  The sale "officially" started at 3, according to the ad, but people started coming about 1:30, and I'll bet we had seen 100 people by 4PM.  CRAZY.  But staying open til 9 was kinda crazy.

Then, we had a psycho lady freak out and it involved cars parking and crashes and all kinds of fun stuff....but I will save that for another day... (Don't ya just LOVE me??)  I'll try to get it on tomorrow... crazy things seem to happen around me....Makes for good blog fodder I suppose!

OH, and Doug shot me in the neck yesterday!  I'll tell ya about that too.  Stay tuned....!

Tuesday, May 22, 2012

MG: The "Will I Be Able To Function Today" Disease

Myasthenia gravis is probably THE most UNpredictable disease EVER.  I have been doing amazing.  I mean, CRAZY-amazing.  Like being able to run errands with Jacob to Kalamazoo without Doug-amazing. 

This morning I wake up, and I feel like I'm in a fog.  Everything seems to be going in slow motion.  I know I have tons of stuff to do, but my brain can't focus.  My eyes feel thick and heavy and like they are full of sand.  I even slept pretty well.  But I've been "up" for 4 hours, but I'm no where NEAR awake yet.

We had to go to a visitation at the funeral home in town last night.... The man who passed away lived a full, wonderful life and had an obviously impact on many, many lives.  It was wonderful to see how many people showed up and listen to people's conversations about what this man had done for them, or how he had affected their lives in so many wonderful ways.

The man was old (89) and had had a full life.  He was saved, so the family had great comfort knowing he is now in Heaven, cancer free, pain free, rejoicing with the angels.  What hope!  Without that hope, I would not exist.  It's as simple as that.  It keeps me going, knowing that someday I will see my Jesus and all those who have gone before me, and that I will finally be 100% free of this wretched disease.

Big BIG thanks to Lori, Steve and their kids for watching Jacob last night while we went to the funeral home.  Jacob did NOT want to leave.  Like REALLY did not want to leave.  We had to drag him kicking and screaming under threat of spankings and promises of happy meals....But we finally got him away.  He just had SO much fun playing with the kids, and Steve....and he's STILL talking about Miss Lori.

We also gained a HUGE "blaster."  That's what Jacob calls nerf guns.  This thing is bigger than him...almost.  Jacob is a head taller, but the gun is GINORMOUS.   I can barely lift it to move it.  And he LOVES it.  He keeps saying, "It sure was kind of Miss Lori to give me this blaster, huh mom??"

Seeing joy in my child is worth all the dart guns in the world!  May everyone who reads this have a special blessing today.  Love to all.

Sunday, May 20, 2012

It's HOT!!

My goodness.  Crazy weather.  It's like 95.  Aaaaand of course we're setting up for a garage sale this week!

In other news, Jacob lost 2 teeth in ONE day!  One in the morning and one at night. I can't find my camera (I'm thinking it's still upstairs....but here is Jacob with the one tooth out:
This is from my phone, which takes better pictures outside...usually.
Anyway.  Had a GREAT idea from a friend about the tooth fairy.  She had her kids decorate an envelope for the tooth fairy every time they lost a tooth, and then she kept them (the envelopes, NOT the teeth!)  Then you can look back later and see how different they are.  I thought that was awesome!  So that's what we did!

Other than that, we've been working on the garage sale, and it was HOT out today....yesterday too.  But I survived!  Thank God..

Until tomorrow.

Thursday, May 17, 2012

10 Random Things From Vacation

So as you may or may not know, my little family took a vacation to North Carolina last month.  It was HEAVENLY and we can't wait to go back.  The ocean breeze, the sound of the waves...watching my Jacob have the time of his life "playing tag" with the waves...rolling in the was PERFECT.  The joy on that child's face made everything worth it.

So.  Here are 10 random things about vacation that you might find interesting, or might be bored to tears, but hey, here we go.

1.  On the first day traveling, we left about 6:20 AM.  We drove through SEVEN states:  Michigan (der), Indiana, Ohio, Pennsylvania, West Virginia, Maryland, and Virginia. Whoo!  We stopped in Winchester Virginia at the cleanest Hampton Inn I've even been in.  It SMELLED clean when we walked in.  Just a hint of bleach (my FAVORITE smell) and everything was spotless.  I didn't even feel the need to UV everything, although  I DID still use my antibacterial wipes for the door handle, switches, remotes, etc.

2.  Pennsylvania (the route we took anyway) is one of the most beautiful states I've been in!  I was so taken aback.  For some reason I thought it was all like farms and Amish country.  But there are amazing hilly roads, mountains, beautiful foilage, and I don't think I saw hardly ANY farms, and we saw NO Amish people.  I was a little bummed about that.

3.  Doug suggested a game to see how many license plates we could "collect" on our drive.  We saw Alabama, Arizona, Connecticut, Delaware, Florida, Georgia, Illinois, Indiana, Iowa, Kansas, Kentucky, Louisiana, Maine, Maryland, Massachusetts, Michigan (der), Minnesota, Mississippi, Missouri, Montana, Nebraska, New Hampshire, New Jersey, New York, North Carolina, Ohio, Oklahoma, Oregon, Pennsylvania, Rhode Island, South Carolina, South Dakota, Tennessee, Texas, Vermont, Washington, Washington D.C., Wisconsin, AND, Ontario, Brunswick and Queensland Australia.  It was fun, and a challenge.  Sure wished we could have gotten them all!  We only did NOT see 11 states, including Hawaii and Alaska, so.....

4.  We met the coolest guy at the bait shop in Waves, North Carolina (or it may have been Rodanthe; they're all squished together).  The shop was called Hatteras Jack's, and I'm giving a shout out to Cowboy! He was so sweet and he and Jacob took a real shine to each other. (Jacob has a way about him....he gets free stuff everywhere we go.)   So Southern, and so sweet...He let Jacob "pet" the fish there (bait fish)...and even took his picture when he caught a blue fish.  So if you're EVER in Rodanthe, and you need to know anything about anything to do with fishing, go to Hatteras Jack's and look up Cowboy.

5.  One of the coolest things was seeing the wild horses on the beaches in Corolla. Open top jeep, the beach, the ocean, and horses. Jacob was in HEAVEN!

6.  On the way home we decided to go to Mammoth Cave, KY.  Well.  The Hampton there didn't have a refrigerator, so we had to stay at the Comfort Inn there.  It was okay, but the air conditioner vent was disgusting.  That was an entire hand held vacuum in the entire hotel, not even a vacuum with a brush!  I'm like, how the heck do you EVER clean these things?  (I think I answered my own questions!)

7.  Jacob and Daddy took the Historic tour of Mammoth Cave, which is a mile in and a mile back.  Everyone was taken with Jacob and how smart he was....Mmmm-hm!  Take THAT all you homeschool haters!

8.  Later that same day, we ALL did the Frozen Niagra tour, which is for "anybody."  Well, I'm here to tell you it is NOT for everybody.  First of all, one of the reasons they say anyone can do it is because there are a total of like 14 steps.  Well.  They don't mention the hideously steep inclines and declines that you have to maneuver, let alone the places where the rock is kinda narrow and you have to duck and twist at the same time.  Thank God I had my walking stick, or I would have face-planted on MORE than one occasion.

9.  Caves have crickets.  Yes, crickets.  They don't chirp, and they don't look like crickets.  They look like albino spiders.  BIG ones.  The park ranger guy told us that EVERYTHING in the caves was protected.  Even the cave crickets.  (This was BEFORE I had seen any....I'm thinking biggie.)  So he says, "If one jumps on you, you can't smash it.  You have to gently brush it off, or ask the person behind you to gently brush it off."

So my question was, "But what about those of us with a knee-jerk reaction to scream and smash anything that lands on us that has more than 2 legs?"  While everyone else (all 6 of them) laughed, Ranger says, "That's not likely to happen."  I say, "You don't know me."

But alas, I made it.  I will NEVER do that again, but I made it.

10.  One of the safest places to be in an earthquake is a cave.  Yeah, I know!  I was like, um, I would think that would be the WORST place!  It has something to do with the earthquake needing ground to travel through (kind of like electricity needs to be grounded, but in this case we're talking actual GROUND), and since caves are hollow, they are safe. 

I think I'll take my chances up here on good ol' terra firma, thank you very much!

Tuesday, May 15, 2012

My Mother's Day And Update

I had THE most amazing Mother's Day.  Woke up to a little face saying, "Happy Muddew's Day!"  Didn't really need anything else!  But, Doug made a wonderful breakfast, and then we cleaned for like 2 hours. I washed a bunch of blankets we had laying around in the living room and on quilt racks, and asked Doug to put MOST of them upstairs.  Jacob took ALL his toys upstairs except for a VERY few, and I vacuumed VERY thoroughly.  For like an hour.  It was awesome.  I haven't been able to do that in FOREVER.

Then a few hours later, I got to mow the lawn (riding mower) for a couple of hours...haven't done that since I was pregnant with Jacob.  It was AWESOME.  When I am on the lawnmower it is the ONLY time that my brain just kinda goes blank.  And I love it!!!  Usually I can't even keep my brain settled for 5 minutes.

THEN I came in, took a shower, and Doug had prepared THE most amazing dinner of steak and snow crab legs for me.  AND his infamous twice baked potatoes.  It was amazing.  What a wonderful day!

I have been feeling AMAZING, and it's been 6 weeks since my last pheresis, and that included 2 weeks of vacation!  I cleaned more's CRAZY!  I have pheresis in 2 more weeks...because I know if I don't keep up with it I'll suffer for it later.  But right now, it's unbelievable how great I feel!  Whoo-Hoo and Thank you Jesus!

Sunday, May 13, 2012

Letters On Mother's Day

Dear Mom,

Not until I had my own child did I even BEGIN to comprehend the true sacrifice a mother makes.  And you had FIVE children!  I know now how much you must have given up to have given us all that you did.  Not that it’s not worth it, because the blessings I receive from one little boy are tremendous.  I hope that you had that times five!

You are a blessing.  You are a true example of self-LESS-ness.  You are truly a gift from God.  When I was in the hospital, having you there gave me so much peace.  Your prayers for me are something I will treasure til the last breath I have on this earth.  I love you with all of my heart, and hope that this Mother’s Day you understand how precious you are.  You are THE best mom ever.

Dear Jacob,

Mother’s Day used to break my heart.  It seemed that everywhere I looked, someone had a baby or child or children…except me.  My illness had prevented me from having babies…until God performed a miracle.  You, my precious, brilliant, beautiful child, are MY miracle.  A personal gift from God Himself.  I don’t know what I ever could have done that was so amazing that God gave me you.  You truly are the light of my life.  I will love you forever, and ever, and always.  To the moon and back.  My precious boy.

And to those of you whose moms have gone on, to those who yearn for children yet do not have them; to those of you who have lost children, and those of you who for whatever reason this day brings pain:  to you I say a special prayer that God would heal the hurt, and give you a special peace and blessing this day.

Happy Mother’s Day To All!

Saturday, May 12, 2012

How Do You Know?

I am so frustrated with myself right now.  I am second guessing so many things.  Sometimes, I make mistakes.  (Shocking, I know...!) And it takes a while to figure them out.  Sometimes, I don't KNOW if I've made a mistake and I'm not sure how to tell.

There have been times, circumstances and situations when I felt like the Holy Spirit was waving a red flag and shouting "Danger Will Robinson!  Danger!"  and I immediately know to stay away, leave, or not do what I was about to.

But there are other times when I'm confused.  I ask God to show me the path, and I don't hear anything.  Or I make a decision I think I'm 100% right on, that I have God's approval or consent or whatever, and I end up tripping into a brick wall or hitting a dead end and end up with a shattered heart.  Like when Doug and I tried in vitro, and were going to use a surrogate.  It was perfect.  Or so I thought.  I felt at peace with God about it, as did everyone else involved. Never had a red flag, warning sign, caution light, nothing.

And it didn't work and my heart was broken.

I can't understand why God doesn't protect us for some things.  I mean, I know we have to go through life living in a broken world, and I get that "sin happens", but if you have a good heart, if you really love the Lord, and if you really want to live for him....I don't always get why He stays silent when all He has to do is say "No."  Or "Stop."  Or "Not such a good idea."

So how do you know?  How do YOU know if you're making wise decisions?  Ug.  Life.  I just wish I was an introverted people-hater.  Then I'd be perfectly content out in the middle of Egypt with no friends. (Except for the one that's MOVING in a couple of weeks.....)


Looking To Run Your Own Business?

Do you like your job?  Do you look forward to Monday mornings?  Do you like your boss?  I have had many jobs over the course of my life (before Myasthenia came along), and what I found out is that I would rather not have a job at all than work somewhere I was miserable.  I was fortunate in that I had more jobs I loved than not; but many people are not so lucky.

Have you ever thought, "I would really like to work for myself."  Being a small business owner myself, my interest was piqued when I heard about  Run My Own Think is a business oppotunity for people who are serious about wanting their own business or franchise.  They are looking for 5 people to mentor, train, and become a licensee of Run My Own Think.

You would then have a worldwide presence on the internet, and have a much bigger influence than you could without them.  So if you're interested in being your own boss and expanding your influence in the world, check it out!

This is a sponsored post.

Thursday, May 10, 2012


Stress is SO bad for MG.  For any chronic illness really.  I think people underestimate the affect stress has on the body.  It can kill.  Literally.

So I'm stressed.  About stress.  Just kidding :)  But seriously...I have a lot of stress in my life.  I actually like stress.  I was an Operations Manager in dispatch at a transportation company after all.  But it's not good for me.  And I don't know what to do about it.  I mean, that sounds trite, but it's true.  There is very little I can eliminate from my life.

Dogs:  Cause HUGE stress.  I LOVE my dogs, but my life would be SO much easier without them.  The hair, the noise, the tripping over them....Ug.

Bills:  Someone has to do the budget!  And it's me. Has to get done.

Jacob:  Homeschool, raising him, discipline, the noise, the activity level....CRAZY.

My health:  MG, fibro., PAIN....I've been to two different "pain specialists" and I always get the same thing:  lose weight, physical therapy, exercise, reduce stress.  Water therapy would be great.  Um, and I paid you HOW MUCH to tell me everything I already know and WOULD BE DOING IF I COULD?!?!?

It's SO frustrating.

I just got my "recommendation" from the last pain clinic:  physical therapy and stress management.  Ya think?

The ONLY things that are "expendible" from an objective point of view are my writing and jewelry.  NOT giving that up.  I know I've written this before...but it's just getting so stinkin' old.

I need flippin' HELP around here.  All I get are empty words. It Just. Gets. Old.
Til Tomorrow.

Monday, May 7, 2012


Jacob:  {seeing the wishbone from last week's chicken on the stovetop}  Mom, can we do the wishbone?

Me: Sure!

So we take the bottoms of each one...and...Snap!
Jacob ALWAYS wins.

Me:  So what are you going to wish for?

Jacob:  That God will make you better and you can still help your MG friends.

Oh, the wisdom of this child.  He does not miss a beat.  The questions.

The other day he asked why God hasn't made me better. We often pray at bedtime for Mommy to be healthy and strong and "never, ever, ever get sick or need another tweatment ever again."  So one night Jacob asks why God hasn't answered his prayers.  {Ug.}

So I explained to him that sometimes God uses things that aren't so wonderful to help other people.  Like my MG.  I have MG friends that I try to encourage and other people with sicknesses too, that I wouldn't be able to help or talk to if I wasn't sick.

So now Jacob prays and "wishes" that God makes me better and I can STILL help my MG friends.

How I adore my child!!

Thursday, May 3, 2012

More Amazing Outer Banks

I caught the biggest fish, thank-you-very-much!

Cape Hatteras Lighthouse

My Mighty Fishermen : )
Our First North Carolina Sunset

Jacob playing Frisbee with Daddy in the back yard of our amazing house

Alligator (it IS in a tank) at the NC Aquarium
I cannot WAIT to go back!

Wednesday, May 2, 2012

Handicap Accessible Vans

I have a friend who has a smart car (she's way more brave than I am...those things SCARE me they are so small!), and she made it handicap accessible!  I don't know all the details, but she has MS, and is in a wheelchair a lot of the time, but likes her independence.  So now she has a car she's comfortable in, and it's handicap accessible.

I pray that I am never wheelchair bound to the point of having to get a van with a wheelchair lift or ramp.  There is a place where you can get handicap vans.  I'm not sure where my friend got her car outfitted, but I would think it would be easier to just get one already handicap accessible.  (Not to mention getting a van or even a handicap minivan instead of such a tiny car!)

As I said, I'm not in a wheelchair, by the grace of God, but I have been temporarily, and many times DO have to use a walker or at least a cane.  I have wondered in the past where people get vans that have wheelchair ramps or lifts. Now I know.  Check out the Motility Works website for all the different possiblities! 

Now when I see a van that has a lift or whatever, I'll understand the process a little better!  If you'd like to see some testimonials, check out the Motility Works blog at

This is a sponsored post.

Tuesday, May 1, 2012

Random Updates

Oh my goodness.  Monday was SITS day. Thanks to everyone who stopped by and commented!  I will get back to you soon!

I'm still exhausted from vacation.  Doug is fighting allergy stuff big time, and Saturday when we got back he pretty much hit the wall and rested all day.  So I had more to do than "normal"....Sunday I was busy all day too, unpacking, etc.

Monday I had an 8 AM appointment at the dentist because I lost a filling on vacation.  They had to check to see if the tooth was "viable" and take x-rays before they could do anything.  So Tuesday I had a 1:20 appointment at the dentist (I HATE the drill, the buffer, the sounds and smells...HATE it)....then home to grab Jacob, drop him off to Doug at work, and go to my second appointment, the foot doc.

For some reason, my diabetes doctor wouldn't qualify me for free diabetic shoes (I see her for one of my two appointments that will basically take all day) so when I DO see her I will certainly find out.  All I need is ANOTHER doctor, ya know?  Geez.  The foot doc is super, super nice, but if the diabetes doc. observes my feet too, why couldn't she have approved the shoes and saved me some time,energy and stress?  As I said, I will find out tomorrow.

Feel like I could sleep for a week.
That's all for now.