Tuesday, June 5, 2012

One of those "Ranting about Illness" Mornings

It's what I just said up there. I am rotating a heating pad from by back, neck, stomache, sides and butt. And letting J. sleep so I can just be. I'd had plans to teach him the real way of cleaning toilets and hit some scout achievement activities- but I am scratching them today. It's summer for cryin' out loud!

Truth is this:

The transistion from one chemo med (low dose) to an "anti organ rejection" drug to help with an auto-immune disease, in just a few short days, is a downer.  I went to semi-okay. To not okay.
And that isn't okay with me. I don't like it. I have things to do. Food I WANT to eat. I've planted a whole garden of stuff that I will have to blend on pulse for 10 minutes and hope that some of it absorbs into my body.

Last night, while enduring pain from eating throughout the day or a reaction to Cyclosporine, I read some of Nelson Mandela's auto-bio. The Long Walk to Freedom. After watching the movie Invictus I was reminded that The Torment (big bro. ) had suggested it [the book] to me a year ago.

The movie made me cry at points. And not just because of Matt Damon's cool accent and Rugby players strength and muscle. It was a well made movie and I don't care about all the politics- I just saw a man who spent 27 years in jail work with the Cappie of the South African team and... it was beautiful. When they went out to play with the township children with hardly any clothes. Who'd played soccer but when they saw the black Chester--- they all jumped around these men.

So I read a few pages of the book last night.

Then I slept.

I woke up in pain and sat there waiting for the strength to get out of bed- when the urge "to go" got me out of bed faster than.... something. Can't think of anything clever right there.

Flushed and exhausted from that ride, I went upstairs and surmised the pills. The different colors. Even on the same pill;
Turquise and blue
powdery white
pure white
round white

With their little numbers and letters indented on them or printed so I know what I am taking. Or a chemist knows.

The act of actually taking what is making me nauseas and whatever, makes it ironic. I am sick. But I am making myself more sick so I can get better.

 And apparently opening myself up to side effects that can cause some hair in unwanted places, and a host of other things. (Please know this is not a plea for herbal remedies.- Tried it, almost died. And I have found that not eating or drinking takes away all painful symptoms until dehydration sets in.

Eating my Rice chex I garnered the strength to swallow the poison and went back downstairs.

I wrote an email to Dr. Kathleen Boynton, at the U. of U. hospital, as I let an anti-nausea med dissolve under my tongue. I hope she write back- soon. Even her empathy is half way healing. We all are in this and have huge question marks about it all. That only some of us have to do the trials or whatever and find out what works. Create a path. Scratch out others.

Where are the pharm companies? Who can I write to either thank or give pleas to? Is there one guy at the head of all this "healing" that waves a magic wand on what is made or what money is designated for what illness? Do the scientists really care about finding the gene or whatever that will fix this prob, or is it a goal that will fulfill the wish of a lifetime for them to win some medal or Nobel Prize?

Kathleen is

 One of the best Dr.s.

She listens.

I can call her Kathleen. We email each other. About stuff. Other than disease. But she knows my disease. I just can't get to her. It's hours away. There are labs. Needed constantly. So we talk on occassion and I see my Dr. here, who I have to admit is just as stymied about this as I am.

What do I expect? Often I go in the office for an appointment or even into the hospital and figure they can "heal" me on that visit. That my probs will go away. I will get up out of the bed, change from my tattered hospital robe, put on my regular clothes and walk out a new woman.

I dream about things like:

not feeling arthritis- after exercising I can feel the strength of the work I've done, not the undoing of what I have achieved at in "healing".

To be able to order what I want at a restaraunt and not be haunted by it within minutes, praying to the porcelain Gods.

But who doesn't hurt? I am finding everyone does. From the play off bball players on down to me. We all are working hard and hurting.

Will some biochemist find a cure? Can I please have an immune system transplant, pronto?

Or maybe I cab buck up and  navigate this ordeal! Come on, woman. Get over it.

Heck, I just finished a book: Autobiography of a Face. A book about a woman who had cancer at 9 that left more than 2/3 of her jaw gone. She endured an ever evolving face. Over 30 surgeries- most which were a wash becuase of the two and half years of radiation and chemo made it just absorb back into her body. Until she had bone from her leg crushed and then made into a jaw.

Miss Grealy felt the epitome of ugliness her whole life. Can you imagine? Heck, I get unnerved over a zit. And here was a woman who was taunted, children feared. A woman who looked in the mirror and saw a diff. face each time. Or had to avoid the mirror because it was too painful.

The book is written without too much emotion. She chronicles her faces as a Dr. would a medical chart. It is very well written. Lots of detail. But void of her emotional feelings toward it. You can imagine it though.

So what do I have to cry about today?

But that is just it, we all have things we worry about and cause us stress on levels that even Miss Grealy realized reached the levels she felt.


When I start to water my flowers the freezing joints will lessen. I'll go slow so my gutt can handle the heavy hose. yeh, the hose is heavy when the water is in it this last couple days. yay.

Pretty soon J. will say: "I'm bored." Because it is summertime. I'll tell him: "me, too." and see if he can come up with a project I can check off of my Lifetime Achievement Awards.

Which reminds me, last night, as he told me of his adventures with his friend I stared at him and told him he ought to be writing this down. He asked me if I'd help him write a "Bestseller".

I didn't know he even knew the word.

"Sure." I said. So I guess that is what we are doing today; Writing a best seller.

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