Last Year At This Time

So I read Mama Kat's writing prompts this week, and one is perfect for what I'm feeling. The question is: What were you blogging about last year at this time? What has changed?

Well, last year on this very day I wrote about being almost home from our vacation from the pit of hell (to Florida.) A month long, truck driving, boat towing, freezing our butts off, dealing with a 3 year old on his first vacation, ghetto staying vacation from hell.

What has changed? What hasn't. My health is in the toilet. Jacob is more of a handful. I feel more and more like a failure as a wife and mother because of my health. I am holding it together, white-knuckling it every day, trying to decide which horrible treatment I'm going to choose for my MG (I've decided on Rituximab), praying I don't get the 90% fatal PML as a complication from said treatment. It's really a very UN-likely possibility, but just the fact that it's a possibility sucks.

Sometimes, well, MOST of the time to be completely honest, my life is totally overwhelming. How can I take care of my son when I can't take care of myself? How can I train him in righteousness when I don't have the energy to feed him? How can I be consistent in discipline when I can't remember the last 2 hours? How can I stay sane when I can't leave the house? How can I get my husband to understand what a big deal simply living every single stupid day is? Let alone worrying about bills and budgets and insurance and co-pays and prescriptions...I have like 21 medications. I have to keep that all straight. Not to mention more personal care-taking issues that are difficult for me...showering, shaving my legs, etc.

Then I read on facebook that Jeremy Camp wrote, "A fool vents all his feelings, but a wise man holds them back." Proverbs 29:11 NKJV

I guess it just put me over the edge. Holding it in would kill me. Literally. So I guess the Lord is just going to have to understand that I've having a tough time and need to vent. If that makes me a fool, then it makes me a fool. I've been called worse.

Random Mess (Ranting and Venting)

That pretty much describes my life right now. It's a random mess. And I hate it. I hate what this disease has taken from me. Mostly, my independence. I am SO. SICK. AND. TIRED. of having to call other people ALL. THE. TIME. for help. I don't like asking for help. I do, mostly for Jacob's sake, but I hate it. So much is out of my control I want to punch something.

JUST. FOR. ONCE. could something go smoothly for like, oh, more than 15 minutes? Yes, I'm venting. Today, I don't care. The past few weeks have sucked. Just sucked. I'm tired of everything being hard. I tired of fighting my illness for control of my body. I'm sick to death of not being able to do things with my family. Yes, I'm having a tantrum. NO, I don't give a crap. There are days when I just need to let some of this crap out or I'll explode. And I'd rather do it here than at my son.

I want to be able to go where I want when I want. I want to just be able to get in the car with my son and go somewhere. Anywhere. To a friend's house. To the store. Just for a drive. But 95% of the time I'm too exhausted to drive after I get everything in the car.

Inside I am the SAME. PERSON. I'VE. ALWAYS. BEEN. I think some people don't get that. My mind is the same. My heart is the same. My desires and dreams and hopes are the same. Only now, my body is holding all of those things captive.

You know, people complain about the STUPIDEST things. I overheard someone in the grocery store complaining because they changed the color of the packaging on their store brand products.

Seriously?

I remember when Jacob was in the hospital, full of tubes and IV's and on the vent, the church we attended at the time was completely up at arms, and some people actually left over a softball game.

Really????

I overheard someone bitching about the price of cigarettes. I have a $#*&!%# hole in my neck and struggle to breathe, and you're not only poisoning yourself but also complaining about the cost?

Are you KIDDING me???

I'm just fed up. I'm not pointing any fingers at anyone who reads my blog, so I hope no one takes offense. But if it makes anyone stop and think, so be it. There really are people out there who have more to worry about than what their hair looks like that day, or what shoes to wear.

I hate MG.
I want to be healthy.
I hate having a trach.
I want to gulp huge breaths of air, and talk without having to cover a hole in my neck.
I hate being "disabled."
I want to be able to work, and CHOOSE whether I want to or not.
I hate being dependent on other people.
I want to be able to take care of myself, my home ad my family without the whole flippin' wold having to help.
I hate having to say no so much more than I can say yes.
I'm. just. so. sick. of. it.

We Interupt Your Regularly Scheduled Programming...

AAAhhhhhhhhhhhh!!!!!!!!!!!!!!!!!!

I had to go to the chiropractor AGAIN today. A different one, this time about 25 minutes away. They take clients on a walk in basis after you've been there once. They could get me in this afternoon...so I went, and I can go back whenever. I LOVE Dr. Lou, as you all know, but getting past the front desk can be tough. When I had ribs out, the first time they told me it would be like a week. I was like EXCUSE ME??? I KNOW that if I had talked to Dr. Lou himself he would have said come on in.

I didn't have a rib completely out today, but apparently a vertabrae was REALLY messed up, and the nerve from that runs along the rib (the last one that went out, up high on the left.) It's like a lovely burning hot poker is being shoved into my side, and when I cough at all, it's like that burning hot poker is slicing me open. By 3:00 I had taken 3 Aleve and 3 Tylenol 3's without relief.

I'm going to vent now, so for those of you who like the happy-sunshiney-you-can-do-it-posts, just stop now.

I am SO.SICK.AND.TIRED of telling my precious, innocent little boy that I can't do things. Jacob's latest catch phrase has been "But that's not fair!" And we keep getting on him because he said it ALLLL the time. So instead he started saying, "That's not good." But today was just NOT FAIR.

It was SO beautiful out today...and the breathing and MG is doing pretty good....I completely over did it on Saturday when I attempted to frantically clean the office before the computer dude came to fix my computer. Doug moved the GINORMOUS gun case out of the office so I can finally make it MY room for Creative Memories, my writing, and school with Jacob.

But anywho...so we're outside eating lunch (as picnic-y as I can get), and he's hitting a ball off his tee. He's awesome. Left hand, right hand, doesn't matter.

Then he gets his little mitt and and ball. "Mom, let's play catch!"

"I'm sorry honey, Mommy can't. Remember, I have an owie in my side?"

"Yeah, but I want to."

"I want to too, buddy, but I just can't."

"Mom, can you push me on the swing?"

"No, Jacob, I'm sorry, buddy. Mommy can't do that either."

"But that's not good."

"I know honey, I'm sorry."

"But Mom I want to swing!"

"I know, sweetie, but Mommy can't lift you onto the swing."

"Well can you push me then?"

Tears from Jacob. Tears from Mommy.

He must have asked 20 times about 10 different things and I just had to sit there like a damn bump on a log and not do jack because my#$!*&^% back and ribs are messed up again. Like I don't have enough to deal with!!!!

I felt like the crappiest mom on the planet today. Jacob just kept looking at me with those big blue eyes.....

This.just.plain. SUCKS.