Saturday, July 31, 2010


Ug. I'm finally back online! I will try to catch up shortly....Jacob has a little cold, and yesterday was Ann Arbor (plasmapheresis) so I'm just updating really quickly on stuff. Mostly I had to get on here and pay my bills. I have been so lost without my computer.

So....Hopefully I will post tomorrow. If not, for sure on Monday. Thanks for hanging in there!


Wednesday, July 28, 2010


Hey all,

I am at my hubby's work on his computer and need to leave in about 5 minutes, but I wanted to post really quickly.

I need a cell phone booster to get my internet to connect because I live out in the middle of freaking nowhere the country. Well, we had hellacious storms last Thursday, and I've been having trouble connecting since then.

My McGuyver hubby got out his electricity meter thingy and somehow came to the conclusion that the box had been hit by lightning. It is fried. SO.....I will be getting a new one, to the tune of waaaay more money that I wanted to spend, and hopefully I will have it tomorrow!

Until then....


Monday, July 26, 2010

Monday, Monday....

What a weekend. I am simply exhausted. Jacob gets his cast off today!! Woot! Woot! There is a teeny, tiny chance he'll have to have it back on for two weeks, but I highly doubt it. Either way, this one is coming off. Good thing too cuz it's getting Stinky! P.U!!

My mama-van is awesome. I will post pics soon. We killed 2 birds with one stone on the purchase: we had a boat to sell, and were getting NO takers. Not even lookers. Or callers. Or questioners! So we were going to take it to auction and get virtually nothing for it.

Well, the dealership took the BOAT in on trade! Craziest thing I've ever heard. Doug asked the sales guy if they would, and I thought: "I knew I would drive him stark raving mad eventually, but not quite this soon, and definitely not here!!"

So you can imagine my surprise when they said yes! We should have gotten double what we did, in fact, blue book was TRIPLE what we got, but in this market, with this ecomony, we're just glad to get rid of the thing.

I took some really funny pictures of Jacob when we did our first load of laundry in our new washing machine (which incidentally, I found the receipt from the transmission we had put in the car LESS than 2 years ago, and it was the same price as the washer and dryer combined! That tells me two things: The cost you pay for labor when you get a car fixed is RIDICULOUS, and, we got a really good deal on our washer and dryer!). He was mesmerized!
Not exactly sure what this is all about, but it's hilarious!


Friday, July 23, 2010



What immediately comes to your mind when you see or hear that word? A wheelchair? Someone who is bedridden? Maybe blind? Or deaf? What about an amputee? Surely they are disabled.

What about me? I am a stay at home mom. I have a very active almost 4 year old son. Just a quick glance at me and you would think I was pretty normal. I’ve been married for almost 10 years to an amazing man.

I can drive.

I can see.

I can hear.

Yet I am “disabled.”

I looked up disability in my Synonym Finder (next to the Bible, my favorite book on the planet). Read these words, and tell me what images they convey. Incapacity. Unfitness. Impotence. Helplessness. Powerlessness.

Well, I say powerless no more! As many of you know who follow my blog, I have a neuromuscular disease called Myasthenia Gravis. It is rare. I may look completely normal to many people, except I do have a trach.

I can go to a store, be just fine walking in, and on the way out, need to use a cane. I’m not yet 40 years old.

I have frequent double vision, so sometimes I have to wear an eye patch…either that or go around winking at the whole world. The eye strain causes terrible headaches and exhaustion.
I am unable to work outside my home.

I live on a small farm and have 3 dogs and a child I am 100% responsible for when my husband is at work (and 75% responsible for when he’s home, but that IS getting better!), so I very definitely work at home. I am technically disabled. I worked my whole life up until I got sick, so I receive disability. I am fortunate that I can contribute to my family income.

But you know what? I. AM. NOT. POWERLESS.

Did you get that? Just want to make sure. I am NOT powerless. I am NOT helpless. I don’t want pity, and I don’t need you to feel sorry for me. I need you to understand. I need you to work with me. I need you to encourage me with the things you see me doing that I am good at.

I don’t need a lecture. Sometimes I just need someone to listen to me vent my frustrations when my body is betraying me yet again. I am the same person in my mind and in my heart that I have always been. My brain can’t seem to comprehend that my body isn’t cooperating!
And I’m glad. I will never completely accept this damn disease. I will fight it tooth and nail till the day I die. Will I take care of myself? Of course. Will I get my necessary medical treatments and take my medications? Surely.

But I will not lie down and let this disease claim my life! It has taken enough from me, and it will get no more. It will NOT get my laughter. It can NOT claim my sanity. It will NEVER steal my compassion. It can NOT abduct my faith. And I will NEVER give up HOPE.

Please check out the button on the very top of the right hand column of my blog. It will send you to a website called Bloggers Unite. Today we unite for the disabled. Today we take back our power. And you can make a difference. Please go to


Ya Win Some, Ya Lose Some

I am supposed to be in Ann Arbor right now, at this very moment running on the plasmapheresis thingamadoodle. (I'm sure it has a much more formal scientific name, but whatever).

However, our car died. The transmission is slipping, leaking, and doing whatever bad things a transmission can (but isn't supposed to) do. Bad transmission! Oh, oh, oh!

So we are out car shopping. We were hoping it would last through the winter, but such luck. So....not really what I was going to post about but...we're at Doug's work right now; he had to help Mr. Tim with something, and then we're going back to look at the first one we looked at... I will soon be a minivan driving mom. NO soccer though.

I will also have to post about my early 10th wedding anniversary present....a new front load washer and dryer! Jacob was fascinated! I've got some really cute pictures to post, but they are on my computer at home (which wasn't working yesterday!)

Then last night we had to run into the basement because we missed a tornado hitting us by "this" much. Okay, maybe a little more than THAT, but it was headed for right over our house. Ug. Sometimes street level radar is not such a good thing!!! Panic attack city! I was so shaky and hyperventilated. Jacob was like, Why are we down here Mom? I said so we can be safe from the storm. I told him not to worry because God would keep us safe. He said, "God and Jesus?" Yes, God and Jesus.

Then he says, "It's safe down here because there aren't any windows." I'm like, that's right! How did you know that?

He looks at me like I'm crazy: "Because I have a big ol' brain mom!"

Yes, he does!

Wednesday, July 21, 2010

Empowering People With Disabilities

For some reason I've always had an issue with the word "empower." Somehow it has a negative connotation for me. As if we are assuming that the whom or what we are trying to "empower" has no power at all to begin with. I guess that's neither here nor there.

What I want to tell you about is the button on the top of my blog. Blogger Unite: This week is to empower people with disabilities. Bring attention to them. Bring the issue to the forefront. Clicking on the button will take you to the bloogersunite website. It's pretty cool.

This issue is close to my heart for obvious reasons. I consider myself disabled in certain ways, I suppose, (But I'm not one of these "I'm not handicapped, I'm handi-capable!...if you are, good for you.) I can't work. I would be hard pressed to live alone with or without my son. Ha. Try getting my son away from me....Ain't happenin'! But my brain and my heart are the same, and I lie to be treated with dignity and respect, not pity. Compassion is fine. Sympathy is not.

But there are many ways in which I don't FEEL disabled. I can still be a wife and mom. Maybe not to the extent someone else can be, but is that a disability? I can still use my mind, thank the Lord. I still have a heart of compassion for people, even more so since being sick. There is SO MUCH MORE to people with disabilities than their disability! We are NOT our illnesses!

So if you could, hop on over to the bloggersunite site by clicking the button on the top right of my blog. I found this organization when they were asking people to donate and blog for Haiti after that horrible earthquake. There are many good things they do, and one is sure to strike a chord in you.

So this Saturday, please check back for my post about empowering people with disabilities. I'm sure there will be many, many more folks doing this...maybe even you!

Now it's off to run errands, hopefully before it hits 90 degrees and 90 % humidity...again. Thankfully Joanna is going with me a little later in case I crash (from the MG, NOT the car!)
Be blessed today, guys. Thanks for reading.

Tuesday, July 20, 2010

What a Mess!

So we went to the vet the other day to have Molly and Blackie checked out. Molly had some HORRIBLE reaction to the tick medicine we gave her. She had to have her back shaved, and it's still growing back. She's had a full course of antibiotics, and been on 3 different spray medicines, and it's not gone yet. So we took her back, and they gave us MORE antibiotics and yet another spray. Molly is my BABY. We have had her for nine years. She was my first "child." This picture breaks. my. heart.
Then you have Blackie, still recovering from being steamrolled by Doug's truck. Total accident, of course, but we felt horrible. He's doing REALLY well..I mean, it's getting harder and harder to keep him "down." He's so much bigger than this picture already! My goodness! But he's still not walking 100% on the leg that had hip surgery.
The one time we went to the vet I had to use my cane. The next time I had my eye patch on, and of course I always have the trach.

So this time, we also have Jacob, in a cast. I'm thinking, what the h#ll must these people be thinking? What a mess!!! Here we all come traipsing into the office: Molly's still half shaved, Blackie's still limping, Jacob had just woken up so he was being ridiculously whiny, I had double vision but I didn't have my eye patch so I'm winking at the whole world, I was like, Gosh, I hope they don't call family services or nominate me for parent of the year award or anything. Good grief.
We honestly are normal, happy-go-lucky (usually), animal-loving, dote-on-our-child-and-love-him-with-all-our-hearts people!! I told the vet at least none on this happened on my watch!
We must have looked a sight! I swear, my middle name is neither "grace" nor "accident-waiting-to-happen!"

Monday, July 19, 2010

Nothing Let's Write!

Well, nothing is new on the MG front. Hot weather. Too weak to go out and do anything. Double vision. SO.

MamaKat has a writer's workshop, and I've seen many people reference it. So I decided to join! One of the assignments for this week is to write about your wedding song. Since my 10th anniversay is coming up next month, I thought this was a timely post!

Doug and I actually had 2 songs at our wedding. One was Shania Twain's "From This Moment On:" (the duet version, of course!)

(I do swear that I'll always be there. I'd give anything and everything and I will always care. Through weakness and strength, happiness and sorrow, for better, for worse, I will love you with every beat of my heart.)

From this moment life has begun
From this moment you are the one
Right beside you is where I belong
From this moment on
From this moment I have been blessed
I live only for your happiness
And for your love
I'd give my last breath
From this moment on

I give my hand to you with all my heart
Can't wait to live my life with you, can't wait to start
You and I will never be apart
My dreams came true because of you
From this moment as long as I live I will love you,
I promise you this
There is nothing I wouldn't give
From this moment on

You're the reason I believe in love
And you're the answer to my prayers from up above
All we need is just the two of us
My dreams came true because of you

From this moment as long as I live I will love you,
I promise you this
There is nothing I wouldn't give
From this moment
I will love you
As long as I live
From this moment on

I remember the girls (my good friend Diona and her younger sister who had a very beautiful, low voice) practicing while we were getting dressed and I just started bawling. They had the MOST amazing harmony!

The second song was sung acapella by Diona's sister Angie. It was Steven Curtis Chapman's
"I Will Be Here:"

Tomorrow morning if you wake up
And the sun does not appear
I, I will be here
If in the dark, we lose sight of love
Hold my hand, and have no fear
'Cause I, I will be here

I will be here
When you feel like being quiet
When you need to speak your mind
I will listen
And I will be here
When the laughter turns to cryin'
Through the winning, losing and trying
We'll be together
I will be here

Tomorrow morning, if you wake up
And the future is unclear
I, I will be here
Just as sure as seasons were made for change
Our lifetimes were made for years
So I, I will be here

I will be here
And you can cry on my shoulder
When the mirror tells us we're older
I will hold you
And I will be here
To watch you grow in beauty
And tell you all the things you are to me
I will be here
I will be true to the promise I have made
To you and to the One who gave you to me

Tomorrow morning, if you wake up
And the sun does not appear
I, I will be here
Oh, I will be here

Just reading those lyrics fills my heart with love and my eyes with tears. Other than the birth of my son Jacob, my wedding was the happiest, best day of my life. I had my old Shiley trach yet, with a band around my neck that Doug decorated with shiny white leaves and pearls to match my dress. He was and IS amazing. He can do almost anything.

Both of these songs mean so much to us. Knowing that Doug would be there for me...knowing that he married me six weeks before I went into the hospital, knowing he chose to stand by me....It was just the most beautiful day ever. (We eloped on Aug. 26, 2000 and had our "big wedding" on August 25, 2001, one day shy of our first anniversary.)

I love you honey!


Sunday, July 18, 2010

400 Posts?

Wow! I can hardly believe I've hit 400 posts. That's awesome! Nothing special planned for today...I actuall revceived a HILARIOUS e-mail yesterdy that just HAVE to share...

So sit back and have a laugh today!

I used to eat a lot of natural foods until I learned that most people die of natural causes.

There are two kinds of pedestrians: the quick and the dead.

Life is sexually transmitted.

Healthy is merely the slowest possible rate at which one can die.

The only difference between a rut and a grave is the depth.

Health nuts are going to feel stupid someday, lying in hospitals dying of nothing.

Have you noticed since everyone has a camcorder these days no one talks about seeing UFOs like they used to?

Whenever I feel blue, I start breathing again.

All of us could take a lesson from the weather. It pays no attention to criticism.

In the 60's, people took acid to make the world weird. Now the world is weird and people take Prozac to make it normal.

How is it one careless match can start a forest fire, but it takes a whole box to start a campfire?

If Jimmy cracks corn and no one cares, why is there a song about him?

Why does your OB-GYN leave the room when you get undressed if they are going to look up there anyway?

If quizzes are quizzical, what are tests?

If corn oil is made from corn, and vegetable oil is made from vegetables, then what is baby oil made from?

Do illiterate people get the full effect of Alphabet Soup?

Does pushing the elevator button more than once make it arrive faster?

Why doesn't glue stick to the inside of the bottle?


Who was the first person to look at a cow and say, 'I think I'll squeeze these dangly things and drink whatever comes out?'


Saturday, July 17, 2010

Oooooh...Double Vision

"(Oooh, double vision) it takes me out of my head, takin' me out of my head
(Oooh, double vision) I get my double vision, woa-oah
(Oooh, double vision) seeing double double, double vision
(Oooh, double vision) oh-oh my my double vision
(Oooh, double vision) double vision, yeah-ah-ah eah-eah eah-eah ah
(Oooh, double vision) I get double vision, oooh
How, how?"
-Foreigner Records Album

That album is one of my favorites of all time. Yes, it's beyond my years, but I am the youngest of 5, and my oldest sister is 51. SO. I grew up on Nazareth, Bob Seger (and the Silver Bullet Band! That was my CB handle {Silver Bullet} when I was 16..but that's a whooooole different story...maybe a whole different blog!!)

I also grew up listening to Queen-CLASSIC Queen, like Bohemian Rhapsody. LOVE. I have to admit, my inner rocker chick really digs Nazareth too. Anywho.

I MUCH prefer Foreigner's version of "Double Vision" over mine. Their's ROCKS. Mine STINKS.


Friday, July 16, 2010

Weather Forecast: Hot, Humid, Humid, oh, Did I Mention HUMID???

Oh. My. Flippin'. WORD!

Yesterday at 8 AM it was 75 degrees, and the dew point was also 75, which gave us a humidity of 99 percent. Yes, I said NINETY-NINE (well, I didn't SAY it...) As in, ONE LESS than a hundred.
Myasthenia Gravis and humidity are like gasoline and fire. Add gas (in this case humidity, not flatulence!) to MG and BOOM! Disaster of epic proportions.

Doug and I had an appointment yesterday, and then I had to go to the chiropractor. I took literally 3 steps, and it felt like I hit a cement wall. I felt like I was breathing stoup (thicker than soup, not AS thick as stew). My legs and arms felt like lead, and it was VERY difficult not to fall down. I had to lean on my husband; literally as well as figuratively!

When we got home, it honestly took me 4 or 5 minutes to get from the car to the door...maybe 100 feet? We have kind of weird, long steps to the back door, and I could barely get up them! I had to bend forward and put my hands on the adjacent deck to get up one step at a time. It was ridiculous. Thankfully, I felt fine other than that and my eyes, which were going crazy. I SO hope the new glasses with slight prisms work. The strain is awful. It's so exhausting.

We had also gone to Walgreen's really quickly on the way home to get Q-tips. You would not think that Q-tips with plastic stems (for lack of a better word) would be so WORTHLESS. I was not paying attention to my "stash," and ran out of the cardboard-stick ones. (The wooden-stick ones are worthless too...they just snap).

See, I use these to clean my trach. The plastic ones are simply useless. They don't get the crud out. The wooden ones are useless as well. So cardboard it must be. By the way, my husband and I are the only people I know who go to a store for Q-tips and end up leaving $46.00 later. HUH?? Well, I DID need a new electric girly razor because mine quite literally died. Bit the big bullet. I think maybe the repetitious falling off the counter may have had something to do with it.

And Doug needed a couple of teeny batteries. Have you noticed that the smaller the battery the larger the price?? What's up with that?? So anywho. Auntie Shawn watched Jacob, God bless her, so we didn't have to haul him in and out of the heat and keep track of him during our appointments.

Thanks heavens the humidity broke last night, and I could finally breathe again. It's supposed to be 88 or 89 for the next few days, then back up to mid-90's with high, high humidity again. I'm "this close" to moving to Alaska!

Just call me Nanuk!

Thursday, July 15, 2010

I Love It, I Hate It

Well. I just read an incredibly scathing instructional blog about proper grammar and such. Hmmmm...maybe it's PMS (oh, nope, just had that) but I thought it was kind of rude! Lots of technical stuff. I guess on my blog I'll write how I want to, and if people don't want to read it because my paragraphs are too be it.

Anywho. With that off my chest.

I was thinking some kind of random thoughts today, and my brain was like, "I LOVE blah blah blah, but I HATE blah blah blah." Seems to be a lot of those, so here we go:

I LOVE the feeling after having my teeth leaned; I HATE the $#%! scraper thing.

I LOVE the sunshine and blue sky; I HATE high heat and especially humidity. Curses!

I LOVE blogging; I HATE it when you type too fast and hit the wrong button and delete 50% of your post!!! (Not like that JUST happened or anything...)

I LOVE Jesus; I HATE religion. They are not even CLOSE to the same thing.

I LOVE kind, compassionate people; I HATE mean people. They really do suck. Find another outlet for your insecurity, please.

I LOVE my computer as it enables me to keep in contact with so many friends; I HATE that I am not more technologically savvy.

I LOVE my family; I HATE that we do not live super close to each other.

I LOVE some of the changes myasthenia gravis has brought to my life: a better understanding of God, more patience, more value to everyday things, more appreciation for life, deeper love, easier love; I HATE myasthenia gravis and that there is no cure.

What about you? What do you love? What do you hate?? Let me know!


Wednesday, July 14, 2010

It's a New Day

So after yesterday's pity party soap box, God must have just shook his head. I ended up having a great day! I was able to do a load of laundry, fold 2 loads (Jacob's clothes were already washed) vaccuum, AND do the dishes and straigthen the kitchen a little! I LITERALLY have not been able to do that for months. It was a wonderful feeling.

Then this morning I had an eye appointment at 8:20, yes, for those of you who know me, that is A.M., and a dental cleaning at 9:50 (no cavitites mom! Oh...I should probably call mom doesn't read my blog! I'm not sure she knows what a blog is!)

So I ordered the cutest new glasses...they are purple, of course--kind of a lacy pattern in the frames but it's so subtle you can hardly tell...with 4 little rhinestones (LITTLE) on the top corners or the front of the frames, and then also on the sides. Yes, I will get a picture when I get them.

This glasses will be something new for me; they will have a prisms in them. Because of the MG, my eyes sometimes see individually instead of working together. Normal eyes converge to a certain optic measurement of such and such a number (totally scientific, I know!!). When MG'er's eyes get weak, many get double vision because their eyes are NOT converging. In other words, they aren't playing nice in the sandbox!

SO....the trick is to make the prism strong enough to help alleviate the symptoms, but NOT strong enough so that you walk around cross-eyed when you're NOT having issues. (Well, I'm never really NOT having issues...just with my eyes, I mean! buh-duh-bum...chshh) These glasses should help with the eye strain I feel at the end of the day as well. Even if I don't have full blown double vision, I can tell when my eyes are having to work harder to see straight. Oh the joys of MG.

I am really excited to see if these work would be a lot of relief from exhaustion, eye strain and headaches.

SO...a couple of good days, even though it's "Africa hot" again. Supposed to be super hot and humid for the next week. {Sigh}. Oh well. This too shall pass!


Tuesday, July 13, 2010



This past Sunday was wonderful and terrible at the same time. (Before I forget, NEVER get a Splenda smoothie. Oh. My. Gosh. I about puked.)

Doug and I had a bunch of errands to run. We dropped Jacob off and Grandma and Grandpa's house so we could get around a bit easier. It was hot and humid, and our air conditioning in the car works sometimes, sometimes not. Thank the Good Lord it was working Sunday!!

We had to go to Costco, (my fave!) and get Doug a suit for a presentation he has at a conference he's attending in August. (That's a whole separate post.) We had to get our rings wedding ring was HORRIBLE!! Doug had to get some cell phone accessories at the mall, and we were going to Famous Dave's to eat.

WELL. We go to Famous Dave's because we have a gift certificate. We get there and there's a sign on the door that says: "We no longer accept gift certificates as of July 1. Sorry for the inconvenience." Sorry?? BOO on you!! We specifically went to Grandville to go to Dave's, and worked everything else in. We could have gone the other direction just as easily. We were NOT happy. Dave is no longer famous in my book!!

At the mall I about had a breakdown. I was so hot, so weak, so tired. I had to walk with my cane. I just looked at all the people walking by and I was SO jealous. I'm like, "Look at how easily everyone is getting around, carrying all these shopping bags and corraling their kids, talking and laughing...and here I am struggling just to breathe and walk." It frustates me TO NO END that I cannot or have not just accepted this stupid disease. I've had it for TEN years for crap's sake. There's just part of me that can't, WON'T give in. While sometimes this has ket me alive, lately it has been to my detriment.

It annoys me that I'm jealous of them because I have no idea what their lives are like. Maybe they are on crack or bankrupt or stupid. How do I know?

I get worn down. I cry. I get frustrated. I pick myself up. I do okay. I get worn down. And so it goes. Part of me figures if I'm going to feel like crap, I might as well go out and do stuff feeling like crap instead of just sitting at home feeling like crap. Sorry, that was a load of crap in one sentence! : )

I don't know why I think I can convince myself I can do things I can't....just having a frustrating time. Ever since I went off my meds to have Jacob (which I would do all over again to have him), I haven't been the same. I don't think I ever will be. Damn this disease.

I hate it. I hate limitations and I hate feeling frustrated and I hate not doing what I want and need to do.

Well, that's the vent for today...I'll try to be back to my sunny self tomorrow!

Monday, July 12, 2010

Click Carnival

Hi, I'm Kerri! I am a stay at home mom to an almost 4 year old with more energy than a nuclear reactor! Jacob is gorgeous and brilliant, and crazy and beautiful and compassionate. It's very challenging to raise him while struggling with Myasthenia Gravis, but we do our best.

Today I am participating in the Chic Click Carnival! via SITS. They are having a cool contest where you leave a link to your favorite post (or in many cases ONE of your favorites) and then link to the contest (you can click the Carnival link above for that). One of my favorite posts about living with Myasthenia Gravis is For Just One Moment....Imagine.

I tried to give people a real visual of what it's like to experience chronic disease on many different levels, without writing a book (which I AM actually stay tuned!) One lovely lady I found through Visit our Peeps is Tracy at Free Indeed. What a beautiful blogger! Wow.

So....there's a lot to check out in this post, so I'll let you get to it! The contest ends Thursday, so make sure you sign up!

Saturday, July 10, 2010

Random Letters

Dear Whoever Made the Flea and Tick Stuff my Molly-dog is Allergic To:

I thought you were supposed to make stuff that killed fleas and ticks, not my DOG! No, Molly isn't really dead, but she had a huge patch shaved off her back and and had this horrible reaction from YOUR product. Maybe you need to re-think your formula, or pound chart or something. AND this was a free sample from the vet! Shame on you.
Doggie-mom of Patch (aka Molly)

Dear Blackie,

My darling pup. That HUGE, black and red metal thing that goes vroom vroom and drives aroud the yard sometimes is NOT a huge toy for you to play with. You will you did. Mommy is just glad you are healing so quickly.

Dear PA who First Looked at Jacob's Arm,

You are WONDERFUL with children. My son ALWAYS cries at the doctor, but not with you! Talking about your animals was perfect...he is an animal junkie!

My only concern (s) are 1. you left finger marks in Jacob's cast. My OCD brain is having a difficult time with this. I almost made the bone doc put a new one on yesterday. Somehow, I refrained. 2. Please don't even MENTION surgery if you are not 100% sure it is more than 90% likely. I freaked for no reason.
Many Thanks,
Jacob's Thankful Yet Frightfully OCD Mom
Dear Whoever Makes It Illegal for the Person Who Calls to Tell Me WHY You Need to See My Son at the Hospital ASAP:
You suck. You need to make it illegal for chickies who CAN'T say anything but "how far away is your son? The doctor needs to see you." to even call me in the first place! If someone is going to ask me how far away my son is from the hospital, you damn well better be able to give me more information than that!
So: make it llegal for them to call, or legal for them to tell me everything I need to know to not have a heart attack.
Much Obliged,
Formerly Terrified Mom


Friday, July 9, 2010

Update on Jacob---YAY!!!!!!

We went to the orthapaedist today and Hallelujah!!!! He said that we should come back in TWO weeks...they would take the cast off, x-ray it again, feel the bones, see if Jacob is in any pain, and possibly....that would be it! Worst case scenario is 2 more weeks in another cast. Big whoop compared to 6-8 weeks in a cast, with the possibility of SURGERY for crying out loud. So we are doing the dance of joy. Dye-dye-dye-dye-dye-dye-dye-dye, HEY! HEY! HEY! HEY!

Thank you thank you for all of your prayers....I will keep you posted. But let me tell ya...this is NOT slowing him down one bit!


Thursday, July 8, 2010

Update on Jacob


We have a cast. Just cannot catch a break.

The x-rays showed a shadow on the back side of the bone just above the elbow. This depicts an injury that would require a cast, whether or not there is a fracture. They believe there is a fracture however. So that means 6-8 weeks in a cast. We have to go see a bone doctor tomorrow to make sure he agrees with the family doc. They mentioned surgery MAY be a possibility and I was like, that's what THEY think. I saw the x-ray. There is no need for surgery, and if he says that, we will go elsewhere. We'll keep you posted.


Never A Dull Moment

Well, there truly is never a dull moment around here. Me with the MG, the weather, one dog (Molly) still has half her back shaved from the horrible allergic reaction she had, (the fur is finally growing back, but she still looks ridiculous and it's been almost a month). Blackie with his broken hips and pelvis, now Jacob. Calgon, take me away!!

Yesterday, Jacob was running through the sprinkler, and fell. Hard. All on his little left arm. Auntie Shawn called to tell me, and ask if she would give him Tylenol...which of course she did. She said he wasn't using it much, and I thought maybe he was just milking it a little...he CAN be a little dramatic...and, no, I have NO idea where he gets it from! {batting eyelashes}

So he gets home, and he's really NOT using it much. He can't bend the elbow all the way, and doesn't bear any weight on it. Ug. So we take him to the walk in clinic (only open from 5-6 PM, then it would have been the ER)...the doc. was AMAZING! Jacob hates doctors. He was fussing and fussing about going...once she came in she talked right to him, and told him about all her animals at home, and he was a goner.

She did want an X-ray though, so we ended up having to go through emergency to register for that. Hopefully we won't get charged an office call AND an ER visit. (I know, I know...I said HOPE). Jacob was SUCH a big boy getting x-rayed. He only cried a little, and that's because he didn't want that vest thingy on. I had to stay outside because they only let one parent in, and I knew if he had to be held down I couldn't do it (physically OR emotionally!!) so Daddy went in.

Because the office isn't open until 9AM, we have to wait til then to get the results. She didn't THINK it was broken, but there IS a possibility of a small fracture on the back of the elbow. We shall see. He slept well last night (for the most part)...but woke up at 6 saying, "Mom, I'm starf-in!" (Starving, which he is not, trust me!)

SO.....I will post an update as soon as I know what's up. Thanks for any prayers offered on our behalf!


Wednesday, July 7, 2010

Weather and MG

If there is ONE thing (other than stress) that drains me as a myasthenic, that wipes me out, steals my energy, and makes me cranky, it's hot, humid weather. I cannot BREATHE in this crap. As my friend Joanna says, "When did we move to Africa???" It's MICHIGAN for crying out loud!

It's been 102, 100, and 98 degrees, three days respectively. Today is supposed to be as bad or worse than yesterday. And the dew points are around 69...which I don't know exactly why but that means it's unbearably humid. Like walk out the door and sweat humid. Ug.

I've had double vision for 2 days. Today is looking a little better. I'm sitting in front of my fan at the computer. We have room air conditioners but not in my office...but it's still comfortable.
Sure hope it cools down!!!


Tuesday, July 6, 2010

Baby No Longer

Well, I am, but Jacob isn't! He is turning into such a little man. I've been "Mom" for like a year now. Breaks my heart. Every time I call him baby, he says, "Mom. I'm not a baby anymore so you really can't call me that. I'm a big boy." {Sigh}

My eyes are still driving me crazy by the way. So this will probably be shorter than my normal posts as well! Jacob is SO ready to start doing school again. Now that my office is no longer a PIT, we can!

July 3rd, Doug and Jacob camped in the backyard for the very first time. Oh my GOSH. You would have thought he was going to the moon. He was so excited. They stayed out there all night too! I kept waking up thinking, "Oh my word, they are still out there!"

Jacob came and got me up around 8 the next morning saying., "Mom! Wake up! It's morning already!"
They tried for night number two, but around 2AM, Jacob needed his Mommy. : ) Yay for me!


Monday, July 5, 2010

Quick update

Hey all,
This will be a short one...the MG monster is rearing its ugly eyes are pretty bad. This makes them worse...So...Hope everyone had a great 4th!
Hope to be back to normal posting tomorrow.


Sunday, July 4, 2010

Happy Birthday America!

If tomorrow all the things were gone
I'd worked for all my life,
And I had to start again
with just my children and my wife,
I'd thank my lucky stars
to be livin' here today.
Cause the flag still stands for freedom
And they can't take that away.

And I'm proud to be an American
Where at least I know I'm free!
And I won't forget the men who died
Who gave that right to me!
And I gladly stand up
next to you and defend her still today!
Cause there ain't no doubt I love this land...
God bless the USA!

From the lakes of Minnesota,
To the hills of Tennessee,
Across the plains of Texas,
From sea to shining sea,
From Detroit down to Houston,
And New York to LA,
Well there's pride in every American heart
And its time we stand and say....

That I'm proud to be an American
Where at least I know I'm free!
And I won't forget the men who died
Who gave that right to me!
And I gladly stand up
next to you and defend her still today!
Cause there ain't no doubt I love this land
God bless the USA!

And I'm proud to be an American
Where at least I know I'm free!
And I won't forget the men who died
Who gave that right to me!
And I gladly stand up
next to you and defend her still today!
Cause there ain't no doubt I love this land
God bless the USA!
-Lee Greenwood


Saturday, July 3, 2010

I'd Like To Thank The Academy...

Actually I'd like to thank Rainforest Mommy for this cool award! Thanks a bunch!
The rules that go along with this award are:
1. Thank and link back to the person who gave you this award.
2. Share seven things about yourself.
3. Pass this award along to bloggers who you have recently discovered and who you think are fantastic for whatever reason.
1. If I could live anywhere on the planet, it would be the Rocky Mountains in Colorado.
2. I have 3 dogs, Moose, Molly and Blackie. I complain about them sometimes, but I would be lost without them!
3. I love blogging way more than I thought I would. I hesitated starting one for so long, now I don't know why!
4. My favorite color is purple. I love all things purple. Especially clothes and jewelry. I even had purple streaks in my hair, which I need to re-do. I have all the stuff for it, and my hubby does it for me! (He does really good, too! He can do almost ANYTHING!)
5. It has been almost 10 years since I got married, since I was hospitalized, and since I got the trach. Sometimes it seems like 100 years, sometimes it seems like yesterday. I don't think I'll EVER accept this disease.
6. I miss my dear friend Linda, who died from endometrial cancer almost 2 years ago. I miss her every day. My heart still breaks when I think about her struggle at the end. She was the best friend a person could ask for.
7. I am blessed beyond belief for the friends, family, and child I have. I thank God EVERY day for all the blessings He has given me!
Now, to pass this along to five awesome bloggers:
To Margaret at The World As I See It
To Crystal at In The Wings
Hope everyone is having a wonderful weekend!!


Friday, July 2, 2010

Do You See a Mouse or a Lion?

Jacob fell half way down the stairs (the whole flight is 6 steps) getting Molly in. I asked him if he was okay, and he said, “Don’t say that Mom! There’s no blood!”

Already at (just about) 4, he’s associating seeing something (like blood) in order to have something wrong. I was really kind of stunned. How did he come to that conclusion? He knows that I’m not like other Mommas. He sees my trach. He knows sometimes I’m really tired. He knows I go to the “hosibal” (hospital) a lot. Yet he associates injury with blood.

Are we truly teaching this to our children? At not even 4? How is this happening? Did I inadvertently teach this to him when he asks for a Band-Aid and I tell him there’s no blood, so he doesn’t need one? (He asks for a Band-Aid for every bump and bruise.)

Maybe I’m reading way too much into this, and he just figured he was okay because there was no blood, ergo he didn’t need a Band-Aid. (He probably didn’t use “ergo”, but you get the picture.)

Maybe I’m oversensitive to it because I’ve been judged so harshly by so many for not always looking sick. I have said before and I’ll say again: Sometimes I wish I could “wear” my illness. Even with a trach! You’d think people would at least ask.

I hate to admit it, but I was just shown 2 days ago that I judge too. (I’m sure I judge more often than that on a less conscious level; but this was a blatant example.) There’s a show on TV right now called America’s Got Talent. A young man named Carlos from Puerto Rico was on the other night. He was very small, his English halting. He was sweaty and nervous, and could barely speak. He told the emcee he was going to sing. I thought, “Oh boy, here we go.”

Carlos opened his mouth and the most beautiful operatic aria came out of this slight little man. We DVR everything, so I was fortunate to be able to hear it again. (And again, and again…) When he sang…the confidence filled the room. He had this beautiful, rich, voluminous voice. It was one of the most beautiful things I have ever heard. He may have looked like a mouse, but he sang like a lion.

I still have so much to learn about life. About not judging the book by its cover. I certainly don’t want to be judged like that. So next time I see a mousy, seemingly uninteresting person, I will beware the lion!


Thursday, July 1, 2010

My Terrible, Horrible, No Good, Very Bad Day

Yes, that's very close to the name of a children's book, but in the book it was Alexander who had the Terrible, Horrible, No Good, Very Bad day. Yesterday, it was me. Just ask Joanna. She had to talk me down from the ledge and rescue my butt.

It started by taking THREE hours to get out the door with Jacob, to bring him to Auntie Shawn's. Then I was going to the chiropractor because my back was JUST starting to act up, and I wanted to fix it sooner rather than later. I also needed to go to WalMart, and then I had an eye appt. at 2:40. I didn't leave til 10:00 to get to Shawn's.

If you read my "imagine" post yesterday, you know about my level of energy system. Well, by the time I got to Shawn's, my change was gone. And I still had my whole day ahead of me.
I get to WalMart, and can't find my handicapped tag. Are you KIDDING? So after spending 5 mintues trying to parallel freakin' park in the handicapped, I had to pull out and find another spot. Thanksfully there was a close one. I bring the bottles back, get some things (between bottles slips and coupons it was almost $20.00 in savings thank-you-very-much!!)

So on to the chirpractor. I get there, park, go up to the door and see an itty bitty note that says: Closed. Back at 1:15. It was 12:15. I literally dropped my purse to the ground and hung my head. I almost sat on the step to just bawl, but I knew if I did I wouldn't be able to get back up again! I didn't have an hour to sit there....Joanna was taking me to the eye doctor because when I get my eyes dilated I can't see. Plus I hadn't eaten yet....and when I get that tired, upset, stressed, my brain just can't function. So I trudge back to the car bawling, call Joanna, and she just says, "Come to my house, I'll drive you back, we'll work it out." (The calm in the storm.)

I decide I better get some gas in the car, and choose to pay with my credit card so I didn't have to walk in to pay. My gas cap is attached by a plastic cord so you can't lose it. Um...yah. After I pump the gas, I realize my cap is GONE. I'm like, SERIOUSLY??? I finally find it under the car, stoop down, take off my shoe, pray to GOD I can stand up again, use my shoe to barely reach the cap and roll it toward me so I could get it.

In the midst of the panic, I "lost" my credit card. WHAT?!?!? So I'm starting to panic again! This day is just getting better and better! After a few minutes of frenetic activity, I see it on the ground up by my driver's door. Relief.

So I fly back to Joanna's, and she drives from here so I don't kill anyone. We decide to zoom to Pizza Hut on the way to the chiro, because they have a lunch buffet. We figure we could be in and out in about 15-20 minutes max. So we get there, park (not by the door because I don't have my flippin' tag) go in, and OF COURSE, no buffet. We decide we might as well order little pizza's because by the time we got back out to the car, blah blah blah.

Get to the chiro, there is no one in the waiting room, but one person IN a room. They take me right in, then AFTER me they put someone in the room next to me. Of course since I am in a hurry, the room she was in when I got there took forever, THEN she went into the one next to me instead of mine (honest mistake) and that took forever...there was NO WAY I would making my eye appt. I HAD to have this appt....I had cancelled like 3 times before....twice because of the MG and once because Jacob was sick. So the ONE appointment I had that day, after getting up at 7 AM, was going to get blown. How does this sh!t always happen to me?????

They graciously worked me in when I got there at 3 (yes I called to tell them I would be late.) The appointment took a while, but I'll tell ya about that tomorrow. Finally get done there, can't see a bloomin' thing because my pupils are the size of Mars, and the sun is like super bright. Joanna takes me to the Secretary of State to get a new handicapped tag (which I had to pay $10.00 for...their normally free, but because I lost it I had to pay)...there was NO ONE in there, so that was the best stop of the day. Yah, the DMV was the BEST stop. Go figure.

SO...that was my Terrible, Horrible, No Good, Very Bad Day. And here's hoping tomorow is much, MUCH better!!!