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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Tuesday, October 28, 2008

Okay Food

I'm in a bad mood. I'm in a funk today. I think it may be the rain or the hissey fit X had on his way to school this morning. It may also be the fact that I over exerted myself with hanging my clothes in my closet, organizing laundry, and cooking dinner so now I'm tired and in pain.

I need to take it easier before my body kicks my ass for misbehaving. Unfortunately, since Im in a grouchy mood I'm going to pass on horror stories about America's inability to access health care. Believe it or not, I kept it rated PG-13.

I have some VERY VERY scary stories that I'll leave for another day. Here are my thoughts for the day. I tried to post you all a video with my last two postings, but again, blogger is acting up.

Inability to access health care scares me as much as the SAW series. I have horror stories from working. I have horror story from friends. I’m going to tell you about them. I’m in the mood to share my scary stories.
I want you to be scared, very scared. I want you to scream and holler and cry about how wrong this is.
After the election, Im going to post every politicians name, email, and phone number who is sympathetic to health care reform. Then I’m going to ask you all to blow up their lines with stories and rants.
Everybody who has known me through my life has known I’ve always been a “causehead.”
Yes, I did go to an antiwar protest with millions of people when I was over 8 months pregnant. No my mom and my boyfriend (now husband) did not approve. Not only because I was due anytime, but because they’re republicans and we just don’t agree.
I was raised republican, we can’t all be perfect.
No twenty-six year old should be placed on social security and disability only to come out of their pocket for insurance, not including co-pays, travel, medications, etc., etc., etc.
I am not talking about me. I’m talking about a nursing school friend named Erica. She’s my age, an RN, and disabled. She lives in Pennsylvania. This is not a problem that is limited in the US. This is what she said:
“I can't pretend to know what it's like to be living with cancer (I love how you phrase it like that), but I do know what it's like to live with some pretty serious problems of my own. And because of that I've been able to relate to many of your posts. Especially this one. I think it's insane how there are so many people dealing with such serious medical problems and then on top of that have to worry about whether the medication they take to keep them alive will be covered by their insurance (which they probably pay huge amounts for). It's happening to me too. I worked for a year as an RN and became disabled in 2006 after having an episode of junctional tachycardia. I was denied benefits for long term disability through my job's insurance so I applied for SSI/SSD for which I was finally approved. I receive Medicaid, but I still pay over $500 to my former employer for COBRA because Medicaid only covers doctors in the part of PA that I live in and my cardiologists and endocrinologist are all in New York. And after almost 26 years of seeing the same doctors and going to the same hospital, I refuse to switch to new doctors. And honestly, I live in such a rural area, I wouldn't see a doctor here anyway. So, I suck it up and fork over half a grand every month. Add to that copayments and my other bills, and it leaves me broke! Sitting here, thinking about it, I realize money plays a pretty big part of this issue but it's not the only thing. It's the aggravation we go through and the worry. I remember even as a kid worrying when my dad's job would change insurance providers if I would be covered because I have a "pre existing condition". (I swear we need to get rid of that phrase) An adult that has enough things to worry about due to their health should not have to worry about pre existing conditions and deductibles and copays, let alone a child with medical problems. Which is why I agree with you and in some aspects I know what you're going through. I've been there. I've been dealing with it since I was born. So, I just wanted to write you to let you know you're not alone and to help others who may not be dealing with these same issues see what it's like and to try to understand what we go through on a daily basis. The more we come forward with our experiences, the more people will fight for a change.”
Uh-oh. There are mor e people like me out there and we’re getting angry.
Unfortunately, her story also marks an underlying theme in healthcare system, inability to access care.
I’ve seen it before, no money, no insurance, no standard of treatment. For example, a twenty-eight year old relatively healthy man continually comes to the ER at Hospital X for treatment of fevers, headaches, sinus infections, ringing in the ears, discharge from the ears, pressure in the skull, and difficulty seeing over the course of three months.
He has no primary care provider. He has no insurance.
If he did, he may have had the CT scan that was indicated by all of these signs for his possible brain tumor.
Instead, he lost consciousness crossing the street and started to seize. He was brought in by medics.
I saw him in the nuero ICU with an intracranial pressure of 50. This indicates his brain is DEAD. Normal ICP is below 15, an ICU can handle up to twenty.
This man died of lack of care to due to lack of money. The insurance industry can deny it all they want. Most of us have heard urban legends about patients like this, some of us have seen it in action, and have allowed it to beat our idealism down.
I told my doctor once that I preferred if my insurance did not dictate my care.
He laughed at me.
My doctors are strong powerful intelligent men and women. I don’t understand how they can continue to be so submissive to the insurance industry. They have to change their scripts to what the insurance will cover for their patients. They change their care plans. They rewrite notes with the “correct” wording so patients can receive reimbursement.
Anybody who tells you different is lying. It’s a secret. It is kept hush-hush.

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