When Will I Learn??

Good grief.

We don't have central air. So I, in all my wisdom, decide to go to the store about 7 minutes from my house to get 2 more of the circular fans they had on sale. We got one on Saturday when the ad first started. Doug was going to stop on his way home from work, but I thought, as it gets hotter, more people will be buying fans.

So then, of course, I start looking at coupons. I mean, if I'm going to BE there, I might as well see if anything they have on sale has a coupon, right? After all, they have double coupons this week too! Ug. So I end up with a list. Then I think, oh crap, Jacob needs shorts on. So I go upstairs to get shorts. I find 1 pair that I know will fit. I get two more-brand-new-bought-on-clearance-last-year pairs of shorts. Too small. He has 2 pair of jean shorts upstairs as well as the other stuff I grabbed to try on him.

So he needs shorts. They happen to have some on sale. So we go to leave (probably an hour and a half after my original intention so it's already that much hotter) and can't find shoes that fit the child. So we end up buying 2 pairs of summer shoes...one pair on clearance for $5.00 thank you very much.

THEN they were out of the fans anyway! I still bought 2, an oscillating standing fan and another cheap box fan to blow on me while I sleep. So then I have to get all this out to my van...Let's just say the fans and the propel water are still in the van for Doug to unload. I had to sit in my van for like 10 minutes before I could drive home. Thank GOD Jacob was a good boy. And I didn't take my suction machine, so all I had was my purse. And Jacob doesn't need a diaper bag.... but of course he DID have to go potty 5 minutes before we were done shopping, so I had to find a place for my cart, take my purse, take him potty, wash his hands (this is all quite tiring).

We finally got home and I put my head in the freezer for a few minutes. That always helps. Now I'm flippin' exhausted....and it's still hot in the house, and Lord knows when the window air conditioners will get put in. As I said yesterday I just got Doug to stop burning wood yesterday!!

Oh the joys of chronic illness and a "frugal" healthy spouse.

Nothing New...so 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!

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!

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!!!

Shopping + Humidity+ MG = Symptoms from the PIT.

Happy Saturday. My arms are like jello, so this probably won't be too long. Been having struggles with overall weakness the last 3 days or so.

However, our local Pamida store had CRAZY sales, promos and coupons today. How could we NOT go? They had 3 coupons...50% off one soft home item (we got an $80.00 floor rug for $25.00 by the time all was said and done!) 50% off any apparel item (Got a shirt that was already marked down, original price was like $25.00, got it for $8.55) and 50% off any sporting goods item. Doug got a tent for Jacob so they could "camp" in the back yard.

The first 100 people got Pamida bags with a snack bag of chips in it, a pen, a coupon for sierra mist, and a Pamida Bucks certificate for $5.00 or $10.00. One bag had a $100.00! I didn't hear any screams, so I don't know who got it.

Now, I live in a town (Allegan) where the TOTAL population is like 5500 or something. On Black Friday we went to Pamida to get an awesome deal on a big on a TV, and there were like 6 people in line. So I'm thinking, No worries...there won't be that many people there. Oh. My. Word. I was soooooo wrong. We had to park in the dirt, but we still were the first 100 to get bags (kids couldn't get them or we would've been s.o.l.)

You walk in and they have free cookies and water, more copies of the coupons in case you forgot yours or something. They ran out of carts though so I had to take one with a big ol baby seat on it. Then I put the rug in, so you can about imagine what I looked like.

Anyway....then, when you check out, you pop a balloon, and get whatever is in there. Most commonly it was 5% off total purchase, or they had 20% off, even one that said entire purchase free! Again, no screaming, so I don't think anyone got that while we were there.

The store manager there, Gerald, is awesome! (No, we're not related!) He's SO nice...it's like he genuinely cares about every single person that he comes in contact with. I've never seen him impatient or angry (and we are there a LOT!) He runs a tip top shop!

I should say that all of this information is purely my opinion, I'm not being paid to review anything or whatever. I mean, I'm just braggin' on the deals we got! Yah, there was a little chaos, but we saved MORE money than we spent. You GOTTA love that!!! So if you're ever in Allegan, check out Pamida while you're here!

It was really hot in there though...very humid today, and LOTS of people. We were there for about an hour and a half, (didn't want to miss anything!!!) so I am exhausted beyond belief. Humidity always slows me waaaay down, but then shopping on top of it....plus I was already weak from yesterday. Ug. Oh well. I'll live.

It was a fun morning...and Jacob was really well behaved. Other kids were screaming and hollering... Jacob just hung out. Asked for everything in the store, but hung out. Good times!

M'k. So Joanna and I were at McTalking time last night Woot! Woot! (Bible study at McDonalds). First of all, we will NEVER go on a Tuesday night again...it's like FAMILY night or something, and people come with all their hooligans and do crafts and let them run around like animals. Not much in a restaurant bugs me more than that. This one monster was LOUD. I mean walls-shaking-everyone-turn-and-couldn't-help-but-stare loud. What are people thinking??? Obvisously they must not be!

Then there's the LOUD MOM. Another little monster was running back and forth through the restaurant. Completely out of control. Mommy dearest was screaming her fool head off. I looked at Joanna like, "People do realize we're in public? Inside? In the year 2010?" Bizarre.

There was also this tiny little girl with curly reddish hair and the bluest eyes. She looked like one of the babies on the Northern toilet paper packs they used to have. She and her big brother were there with Grandpa, and although she must have walked back and forth to get a drink like 34 times, she was a little mouse about it. She was SO stinkin' cute. Regardless. No more family nights for us in Timbuktu.

Today I had an appointment for a check on my diabetes. Up to Grand Rapids. Jacob was scheduled to go to Auntie Shawn's, thank God, because it was HOT. They ran though sprinklers most of the day, so he is currently passed out on the couch. Our air conditioner doesn't really work in the car, so Doug has to keep charging it. It worked fine this morning, but by this afternoon, not so much.

The down to Plainwell to go to the backcracker. Somewhere in there were Costco and Meijer also. I'm like a walking zombie. So tired. Eyes a wee bit messed up... just drooping like crazy. Heat effects MG probably more than any other outside influence other than stress. Stress is the WORST thing for me and my MG. Heat is second. As far as the stress thing goes: I have a workaholic husband (who loves me very much, but he's just always busy), several chronic illnesses to juggle, 25 pills (at least) per day to take, appointments to schedule (which I have to go to alone now since Doug won't take work off anymore)....not to mention 3 dogs and a very, very busy 3 1/2 year old. The list is endless.

And time management....That stresses me to the core. If ANYONE has this figured out, can you PLEASE fill me in? How do I get 24 hours of stuff done in 24 hours when I need to sleep for 8? Frustrating. But I know that's life for lots of folks...which is why I'm praying one of you will have an answer!!

It's been hot here. I mean HOT. I've never done heat exceptionally well, except for when I was a child, and was just in the pool 12 hours a day. We literally went from frost to 90 in less than a week. Welcome to Michigan!

I'm not sure what it is about the heat and MG...espeically humidity. When it's this hot, I walk outside, and everything in me from the brain down just says "I'm going to collapse now." And
me and my brain have to yell at my body to knock it off! Oh well. Tomorrow is supposed to be a little better, then this weekend, gorgeous.

Ann Arbor Friday for plasmapheresis, so that's my week. I'm one pooped pup.