Update in Pictures

So, apparently I don't do real well without this:

My gamma globulin shot. It has become very hard to get at the moment. For the last few weeks, I have been feeling very much like this:

Humpty Dumpty after the fall.

Thanks for bearing with me. I did get some gamma globulin now but don't know when I will be able to get it again so I'm trying to take it sparingly.

Last week, I did get to enjoy this:

Jake's percussion concert. They got to play on garbage cans, which was pretty dang cool. And those are his best buds on either side. Mitch and Forest.

Jake is having so much fun learning drums in his percussion class. He is doing fantastic, even though he has only been in there since January and all the other kids have been in there since the beginning of the school year. He picked it up so fast.

Forgive me while I take a moment here to ponder Jake's cuteness.

Thank you for coming Grams, Pa and Suz!! And thank you Grams for matching that sign (that is pointing to Jake's head) so well.

Hmm... who's butt is higher? Let's just call him Jakey-longlegs.

I also got to enjoy this:

Jake's General Music Choral Concert. I hate to say it but I was not looking forward to this one. (Part of that was that Jake wasn't excited about it or the least bit proud of it. He thought they all could have sung much louder and better, which I think is kind of funny for some reason.) I ended up enjoying it thoroughly though! It was fun to see all the kids that age and their interactions, what they wore, etc. I am ending up really liking this age that Jake is right now. I completely dreaded it, but he is doing well and I really like watching him go through his junior high experience so far.

What is it about when someone tells you what to do?

I have been really good with my eating for about a week. I've been trying to eat actual food during the day. Yeah, I know novel idea huh? No Power Bars, Balance Bars, etc. Just actual meals. When I have no energy at all, this is a lot harder than it seems! I love when I make a big meal that I can eat for a few days. I'm not that picky. My sister in law gives me leftovers too, which totally rocks. And other times, there's nothing to be found. Anywhere. So I just wait until I have energy to make something. And sometimes it happens, sometimes it doesn't. Poor Jake. Problem is, he doesn't like anything I make, unless it is pasta. So, a can of soup or spaghetti for him. I do have oatmeal for breakfast usually so that lasts for a while.

But then I get starved by about 9:00 at night, and I want to eat everything. Is that a good plan for my body? No. So, I am trying to remember just to eat real food during the day. It was going quite well and I didn't feel like eating junk at night. Then, today, while I was lying there fat flat on the table, getting a massage today (the only thing that makes my muscles relinquish their vise grip) the guy starts going on and on about how I need to watch my carbs and that bread is only carbs, and especially watch my fat intake, and I shouldn't eat sugar, etc. (This guy also once went on and on about how I need to exercise. I know. I used to exercise all the time. I loved exercise. It made me happy. It makes me very unhappy that if I do it now, I am even more unable to get out of bed than usual. It does not help to tell me these things. I would give my right elbow to be able to go on a nice jog and not have it make me want to die. But I suppose you can't understand these things unless you have been there. And I hope you don't have to come here.)

So, guess what I did tonight? Came home and scarfed down a half bag of these puppies and ate a cookie. And this is on top of the fattening and delicious pizza my mom got for us at her house. Is it just me or would it be common courtesy to note that it takes a lot of courage to get my half-naked body up on that massage table when I am not even real comfortable with myself in clothes? Dude. You think I don't know all that??? I used to eat really healthy. Grrr. Something truly went awry in my body and I just crave stuff like crazy. Even when I eat real food. It drives me up the wall. I am trying. so. hard. I will be eating some junk for Christmas. So, family, don't expect me to be a saint. But hopefully I can make some progress after that. It feels like no matter what I do though, (I really am good sometimes) my body either just stays the same or gets bigger. Like the fat just wants to stay, like a rude and unwanted houseguest who will never leave.

When you're so tired...

This is my take on my theme song for my life (Kara's idea) and also kinda sorta blatantly copying Tiff's post today. :D It isn't really my theme song for my whole life but it does describe the last 14 years of being sick.

Some of the lyrics in this song are just perfect. I've been singing "When you feel so tired but you can't sleep" line for the last 2 weeks. If you want, you can click on my playlist over there <- and play the songs while you read the lyrics (unless you already know them by heart like me.) Once you click on it, you can scroll around to pick a song.

Fix You

by Coldplay

When you try your best, but you don't succeed

When you get what you want, but not what you need

When you feel so tired, but you can't sleep

Stuck in reverse

And the tears come streaming down your face

When you lose something you can't replace

When you love someone but it goes to waste

Could it be worse?

Lights will guide you home

And ignite your bones

And I will try to fix you

When high up above or down below

When you're too in love to let it go

But if you never try you'll never know

Just what you're worth

Lights will guide you home

And ignite your bones

And I will try to fix you

Tears stream down your face

When you lose something you cannot replace

Tears stream down your face

And I...

Tears stream down your face

I promise you I will learn from my mistakes

Tears stream down your face

And I...

Lights will guide you home

And ignite your bones

And I will try to fix you

And on a more positive note, I feel so very blessed in many ways in my life. I love this song by Sarah McLachlan. I like how it helps me remember that there are so many little miracles going on around me every day. Life is beautiful and a gift. I can wish and hope and pray for better health to enjoy it, but the truth is, I am very blessed in many ways, and I am so grateful.

Ordinary Miracle

It’s not that unusual

When everything is beautiful

It’s just another ordinary miracle today.

The sky knows when it’s time to snow,

Don’t need to teach a seed to grow,

It’s just another ordinary miracle today.

Life is like a gift they say

Wrapped up for you every day

Open up and find a way

To give some of your own love.

Isn’t it remarkable?

Like every time a raindrop falls

It’s just another ordinary miracle today.

Birds are meant to have their flame

They always make it home on spring

It’s just another ordinary miracle today.

When you wake up everyday

Please don’t throw your dreams away

Hold them close to your heart

‘Cause we are all a part of the ordinary miracle

Ordinary miracle,

Do you want to see a miracle?

It seems so exceptional

That things just work out after all

It’s just another ordinary miracle today.

The sun comes up and shines so bright

And disappears again at night

It’s just another ordinary miracle today.

It’s just another ordinary miracle today.

Have you ever not been able to sleep an ENTIRE night? I remember when I was in high school and it was the end of a term, a friend and I would stay up all night and do 2-3 book reports in one night. Did I grow attached to that bleary-eyed, strung out, zombie feeling? Is that why my body just refuses to sleep sometimes? About 68% of nights, I can't fall asleep at a normal time, but I do fall asleep eventually - whether it is 3 am or 5 am... I do fall asleep. This is actually better than it used to be. The 30% of nights that I do fall asleep and it isn't too difficult, are just delicious. But every once in a while, (last night) one of these nights will pop up and I lie there and then try all the tricks in the book, and then lie there again..... and nothing. My sleep buttons are all turned off. Sometimes I don't even mind being awake at night. It is wonderfully quiet and free of interruptions. Sometimes I even get a little energy at night and that is when I can get some things done -usually even better than I can in the daytime. But when you are so exhausted that you can barely stand up, yet you can't do the one thing your body is craving more than anything...fall asleep. What's up with that?!

I am off to bed soon... maybe tonight will at be least one of the 68%!

Fried!

Well, I am completely fried! I will be posting again soon!