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!!!

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!

Quick update

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

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

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.

Okay.

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 Mary at Princess, Daughter of the King

To Aging Mommy

To Crystal at In The Wings

To Corrie at Just Because My Pickle Talks Doesn't Make Me an Idiot

Hope everyone is having a wonderful weekend!!

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!

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!!!