Tuesday, October 30, 2012

Really Writing- Me Unplugged

REmember being in an English class and the teacher told you to just start writing about anything. Freewriting. I recall sitting there with that sort of freedom and being locked into prison. W R I T ing. hmm.
 
How do you do it?
 
Start by doodling. find an object and like a painter try to describe it and suddenly you have your Senior Thesis done.
 
Something like that.
 
I look at my writing posts on this blog, I look at my life and what I want it to mean and be and then I look at my laundry and wonder: is this possible?
 
How can you make a difference when you are struggling with some of the basics? It's fun when I get a clever idea, or J. makes a comment that sends me on a perfect post. Something my English teachers would swoon over.
But the dream is fading like a lot of my clothes in the laundry.
 
And then there are moments that I feel like a fraud. That I am holding myself  back to come across as professional, when I know, I am not.  I started this blog out with the intent on giving myself that freedom that I AM not. I wanted the freedom to sit down and just put words to my world and throw them out there in the face of publishing companies. Because I got sick of their stupid form letters telling me: Nice job, No thanks.
 
Why, the heck, can't I play the guitar and write song lyrics like Taylor Swift?
 
Well, one I don't know many who would wanna hear about GI problems, even if it is on a country music station.
 
Cowboy Poetry- I  might fall into that category a bit better, but still!
 
And who wants to hear the same old chorus of disease relapse? Like your fav. song, eventually it gets old. The tune no longer illicites the same excitement and you move on. However, with this disease, I love so much, the song just plays over and over. Like at Disneyland. Which I've never been to, but apparently: It's A Small World After All, really grates on your nerves.
 
So I decided a couple weeks ago to embrace prednisone with all of my heart. Since i didn't have a choice.
 
The trial drug, that I got one dose of, is so costly the insurance had second thoughts and backed out. Hmmm. So all those months of staying on the lowest dose possible of prednisone, waiting for Remicade. Have that fail. Then wait for approval for a shot that is smaller than my pinky and costs 15k to be stuck once in my arm and then... taken away.
 
Aren't I trialing this drug? Aren't I blazing the trail for the pharm companies? Shouldn't they be begging me to take this drug so they can get richer? Or is that how it works? Will someone explain to me how THIS all works?
 
Do I send them a link to my blog so they can see the side effects of what the drugs do? Would being insanely let down be part of the leaflet they include in each drug when you get it?
 
Earlier I was bragging about getting off of prednsone for good! Yay, me! Strong me!
 
So wrong, me.
 
When My Dr. told me to go back up on pred, I felt the defeat. I felt the bottom of the barrel, 'there is nothing left but to give you this pithy pill that covers your symptoms like a band aid so "we don't have to look at them" feeling'.
 
Oh, sure. My backside was more than glad to get a break from the pain of 3 fissures running up into my colon. That was a relief. But when you know it's only for so long. The honeymoon period of prednisone; where you get your laundry done, mow a lawn, make some incredible meals... and stay up all night long getting even more done. All the while turning into a potato with toothpick arms and legs.
 
But this time, I don't know if it is cause I'm older and been through more that it's harder, or it's The Stelara drug, I was still beat. Just in bed, beat. yeh, I got some toilets cleaned, dishes through day after day. Made it to games and carried my stuff.
 
One thing that is the same is the food craving. My body has no clue it just ate. Why is this? Where is my self control? Cause it is sure that when I come off this and start to feel every inch of my digestive tract it is going to ask me what the heck I was thinking.
 
Tonight J. told me he wished he had a better mom. One who wouldn't get after him for stuff. Like losing things. Exspensive things. I had to remind myself that I've been reading about children suffering in Syria, read a few blogs about kids who have passed from Neuroblastoma to put perspective and love for my kid on days when he says I'm a crappy mom..
And, yet, I was still needing to hold back0to keep from telling him that
 
Santa isn't real.
 
How mean is that- to want to tell your kid such a lie? To get back at them for hurting your feelings?
 
 Oh, just your average ticked off prednizonal mother.
 
I held back.... because one, Santa actually does live next door to us.
And 2. I can't stop believing. Because then what?
 
Then what will we have????? We'll have genocide, childhood cancer, and stupid auto0immune diseases and prednisone minus SANTA!
 
I want to dress up as a pill bottle of prednisone for Halloween. this will just embarrass J. and myself when I come off of it. But I am so tempted. WE don't even know what he is going to be for this year and there are only a couple days to pull of the costume.
 
I mentioned John Adams since his pirate hat resembles the ones worn back then, some curled construction paper, overcoat with brass buttons and wa-lla! A Founding Father!
Our only salvation has been to ditch some of the chapter books and just read The Far Side lately.
That gets us giggling.
 
What DOES not is the transition from FB to BB.
 
Hello, Jersey.
 
He lined them all up in his closet tonight and broke out his well worn nerf hoop.
 
whoomp. thunk. bam. poing. crash. ....
 
All the sounds of J. shooting, slamming, dunking the basketball off the back of his door and the walls for a good hour before bed.
 
(It takes your nerves and just plugs them into a light socket I try to explain to J. And mention the prednisone thing.... he just whines for that perfect, healthy mother.) 
 
And can I ask how many jerseys does a kid need? I recall in Jr. High, we had to leave our jerseys there. And in HS, I had one. Blue/white reversible. Now kids have jerseys of all colors, numbers on them, AND the team name or mascot on it or something. Really? ??
 
Do I need to interview him or can someone explain THIS phenomenon to me; about the JERSEY?
Oh, and I need to put in here that I went out on a mission to find
 
THE SOCKS
 
for him for his basketball shoes.

 
 
So whilst young one was at BB camp, mom was driving across town going to all the places she could think that might have cheap, but cool, light up the court socks...... I was on a mission for socks, people.  With a sinus headache. Did he need these? No. Did I make him pay for them. Half.
 
 Because why?
 
It has to do with helmets and jerseys, I think. You put them on and it's game on.
Not because I am expecting him to play in the NBA some day. - something he thought was very rude of me to say. But I'm not. In fact, I'm hitting math so hard with him this next while he'll be doing stats in his sleep.
 
Where was I? Oh, a Sock Hunt. With a Sinus Infection. After a non-productive day and thoughts of self pity.
 
Then, as if by divine intervention, there they were. Two pair. Matched the orange-red of his basketball shoes to perfection.
 
Thank you sock angel.
 
I've been up most of the night but I have BIG plans for tomorrow. Yup. Prednisone has me already chomping at the bit to get out there and mow the lawn. It's supposed to be another nice day. Watch me though. I'll fall asleep right before the alarm goes off.
Stumble around making breakfast for Jimmer Jr. and then,,,,
 
And then need to wait for a good while before the drug revs my engines and I am out there like I don't have a single thing wrong.
That the world doesn't have a single thing wrong.
 
That the east coast isn't getting hit by a horrible natural disaster.
 
That kids around the world have bullets raining down on them and wonder if someone will save them.
That parents are losing their kids and needing to do fundraisers to help bring awareness to not just breasts, but little kids with cancer.
 
But all I can do is wrestle this drug and vow to do my best to trial some of these drugs so as to help someone else down the road.
 
If they would just give me a chance.....









1 comment:

  1. Hang in there, Amanda... we're thinking of you!

    ReplyDelete

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