Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.

He has since died, and I took on the cause of making cancer care more transparent for everybody.

Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."

I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.

I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."

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Wednesday, April 7, 2010

Damsel in Distress

I've been sleeping like a damsel in distress.
I sigh. I moan.
I roll over and raise the backside of my hand to my forehead in a sleepy swoon, like a fairy tale princess awaiting rescue by her prince.
Then I lie there in peaceful wait....... Or so it looks like I'm doing from the outside.
In reality, I am waking, slowly, and my worried have come flooding back before I've even opened my eyes, probably before I'm even completely out of the realm of sleep.
If anybody has ever wondered how I can remain happy-go-lucky, it's because I stress in my sleep.
Late at night, I'm too exhausted to concern myself with any of the problems that plague me, my family, or the world.
I don't toss and turn and worry like normal people.
Even if I did, I could medicate those problems away for a deep slumber.
But no, that's not what happens. Again, I'm backwards.
When I start to wake up, my problems enter my dreams. I get agitated. I start to toss and turn. Whatever subject bothers me the most enters my dream in some form or the other and continues until I'm awake enough to process the information on a conscious level.
Then I start worrying. I start getting anxious.
At this point it's time to get out of bed. There is no more sleeping.
If I'm lucky, this time is 6am.
I need to wake to confront my proverbial dragons.
What kind of fairy tale sleeping beauty would I be if I didn't have dragons?
It is definitely not time to get coffee or add any further stimulants.
I'm feeling the stress.
Thankfully, I have now tapered to 20mg daily of prednisone.
I no longer have 50 mg of that medication stimulating my adrenals making me feel like every second, at every turn, there is something that needs to be done immediately or the world will crumble beneath my feet.
I finally identified the overwhelming feeling causing this.
It's powerlessness.
I feel completely powerless, completely out of control of everything.
In times past, I would remedy this by searching for control, something, anything, to control.
That hasn't worked in the past for years.
I keep the serenity prayer in the back of my mind (have the courage to accept the things I can not change, etc.,etc.), and even farther in the back of my mind, I contend that I really have control over NOTHING and should just accept it.
I don't control my body. I don't control my emotions.
It is a scary feeling wanting to send a signal for your body to comply with every neuron, with every once of your psyche focusing, only to have your body continue to do what it wants.
This has all been made more difficult with my extreme bodily changes and the coup my treatment has staged on my life.
So what am I doing about it?
I'm adding more to the agenda.
Well, just for today I'm going to swing by the NH State House to advocate on behalf of two Senate Bills I personally believe strongly in Senate Bill 392 and 505.
Both, of course, deal with ironing out health care reform issues and have the goal of making the health care system more transparent in hopes of lowering costs while still providing efficient, quality care.
Senate Bill 392 ( proposes, "The commissioner shall hold an annual public hearing concerning private and public health care payer costs and cost trends and health care provider costs and cost trends for the purpose of identifying and quantifying the factors that contribute to cost increases in health insurance premiums and health care services in New Hampshire."
It also states, "The commissioner shall prepare an annual report concerning health care cost drivers and cost trends."
The bill is meant to educate NH on factors driving health care costs so these factors can be addressed.
Knowledge is power people.
Believe it or not, previously, what each individual hospital paid to each individual insurance company was determined in closed door meetings between administrators. These negotiations were private knowledge allowing for a chest x-ray at two otherwise equal hospitals to range in price by hundreds of dollars.
It also allowed the uninsured to be charged higher rates than those with insurance as a sort of penalty for not being able to pay promptly.
Senate Bill 505 would establish a health care cost commission on health care cost containment and appropriating a special fund.
Wish me luck with this endeavor. I firmly believe that knowledge is power and through transparency in the system costs can be contained.
Check out my statement below for more details.
And no worries, i'm still going to sneak in some enjoyment.
J and I may stop to shop on our way to my appointment with graft vs. host eye guru Dr. Dana at Mass Eye and Ear.
You didn't really think I had a day just to galavant to the State House did you?

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