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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Friday, January 9, 2009


Maybe you have heard, or maybe you haven’t, of Intensive Care induced psychosis.
This is a syndrome generally induced by sensory deprivation.
Google it.
Okay. Okay. Just see
One in every three patients who spends more than five days in a critical care unit will experience some sortof psychotic reaction.
How do you like them apples? ONE in THREE is A LOT.
It exists. Why hasn’t it be studied in stem cell transplant patients?
I KNOW people are out there wondering what we do hiding in our rooms all day.
What, exactly, does someone do when they live within a 15 ft. radius?
Not too damn much that’s for sure.
Now, I’m reintegrating myself back into society. My 100 days is almost here! This is the point at which I can ease out of isolation.
It’s been difficult.
I’ve been experiencing terrible migraines.
I saw a Chiropractor today to aid in my healing.
My neurologist dissuaded me from seeking any traditional medical care at this time.
Nontraditional it is.
Dr. K mentioned sensory deprivation therapy.
This is something I have done myself to ease the burden of my pain, just like many migraine sufferers do.
On Monday, my migraine was so bad the lights were off, the sounds were gone, but I just couldn’t stop the pain.
I couldn’t get comfortable. My pants were wrong. The shirt was uncomfortable. The position of my body was not right.
Use your imagination with what I did to cure this.
It FELT like whatever sensory block I had before that prevented me from feeling EVERYTHING that may come into contact with me was now gone.
WHOA. I like the world, but there are some, or many, things I don’t want to know or feel.
My brain is supposed to protect itself from this. This is how disorders like psychiatric dissociative disorders occur (your brain, or unconscious, protects its conscious by dissociating, sometimes splitting into multiple personalities as a result of severe trauma).
I’m severely traumatized! ALL OF ME. My poor immune system, not to mention the psychological trauma of living day-to-day KNOWING the possibilities, and my neurological system has always been a little bit of a mess.
Twenty plus minutes without vital signs and four sports related head injuries will do that to you.
I am psychologically, neurologically, and immunologically screwed.
These are a few of my favorite things (sing it people).
I’m prescribing myself REST: Restricted Environmental Stimulation Therapy.
And why not, I’m in the process of easing myself back into the world.
I’m slowly introducing new foods, such as fresh cooked vegetables again.
Once I’ve done this to my satisfaction, I’ll introduce fruits.
I’ll do this one or two at a time so I can monitor my physical reactions.
Just like with pregnancy, it took nine months to get the body one way, AT LEAST give yourself nine months to get back.
It took me almost three years to get where I am today, it should be a process to bring myself back.
As I’ve found, the fastest way to find a cure FOR ANYTHING is to get it yourself.
Talking on the cell phone and my home phone while trying to dress myself to get myself SOMEWHERE, ANYWHERE where I could be taken care of on Monday at my mind’s worst certainly did not ease my pain.
Having the ER put me into a coma did.
I actually called the doctors because I was concerned I may kill myself trying to ease the pain.
I, officially, crossed the pain line.
I don’t think I had stopped thinking. I just could no longer handle the thousands of messages my body was allowing through.
This reminds me of the theory of “pain pathways.”
Simply put, once pain has traveled a circuitry that pathway is now OPEN, and easily traveled.
It’s kind of like how Boston was built, the cow paths turned to traveled roadways that are now streets.
My neurological system has done the same thing.
It let loose on me in all its rage.
Now, today, with the pain somewhat eased, I JUST CAN’T STOP.
I’ve had this problem a long time.
But whoa, hurricane Hill is here.
The entire first floor of my home has almost been organized.
J has ten different boxes he will need to carry to their designated storage places when he comes home, all organized and labeled.
I wanted something to organize my earrings. I made something very pretty for my bathroom.
I organized three years worth of medications from probably a hundred different doctors.
I made a couple videos to show all you how this is done.
You may call this productivity.
I’m calling it insanity.
What I did not do is turn on my computer. The light, the flicker of the screen, no matter how many times I reprogram the settings, will set me off.
For now, I’m only posting in the dark. I’ve bought curtains and shades for everywhere.
I’m going to think of some ways to neurologically modulate myself (Like usual, I just need to control myself). I’ll keep you posted on how this goes.
And FYI, this entire posting, research and all, took me fifteen minutes. WHOA.

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