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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Thursday, September 10, 2009

Now a little about me

I'm home. I'm recovering. I'm hanging out with my vanco pole, not the type of pole twenty-somethings are usually seen swirling around, but well, I always have had a unique style.

I can rock anything, even if it is a vanco pole.

Yesterday, I didn't have time to post between rushing to DHMC due to the possibility that my mediport had clotted ALL READY and napping before I picked up Xander.

FYI- the port didn't clot, since it is a dual powerport the internal tubing is half the size of a regular mediport and thus requires more pressure to flush and more strength to get a blood draw to overcome the resistance of the tube.

Very simple fix: we need to use our muscles.

I'm now back on my 8:30 am and pm vanco schedule.

I've also been napping, reading, and watching tv.

I do think I am recovering really well. I do not have anymore treatment until a week from monday. Sooooo, that makes my chemo the 21st.

I think that's a decent amount of recovery time.

As a patient, listen to me, I know how hospitals can cut energy costs.

Very simple: have patient tvs shut off after a period of inactivity, say an hour.

If the patient is actually watching, no harm, no foul; they can get back to their channel.

If the patient is asleep, like I usually am, cha-ching, money savings.

Just a thought. I’m not an ultracheap, nurse, professional patient that’s always looking to save costs or anything.

That person must be someone else.

Hospitals could really handle having SHELVES. There is a severe lack of shelving in the bathroom.

A patient with no blood pressure taking a hot shower that has to bend over and stand up quickly to get the soap is a recipe for hypotensive disaster.

Take it from a woman who has been there, done that and almost did it again.

Shelves in showers will cut down on falls.

Just some ideas since I have been invited to serve on really cool health care reform committees all over New England and I am completely unable to participate due to my health.

I want to have a voice.

I think we all should have a voice.

The urgency to kick and scream is lessened since last night our government agreed that reform is needed.

I didn’t really listen to the president.

I know his side.

I listened to the republican side, which makes perfect sense.

I don’t totally agree with what they’re saying. Specifically, I think the rich should be taxed and I do think insurance companies need oversight immediately.

I HATE the idea of forcing people to have insurance and fining those who don’t. That sounds downright unamerican.

We are the land of the free. That includes having the freedom to make stupid decisions like refusing to have health insurance.

This would not be an avenue to provide revenue that I would actually walk down. This would again penalize the poor who can’t afford care.

I also think a public option would work since while a public option would provide competition, it would also add transparency to the process and keep insurance companies honest.

It is no secret, here anyway, that insurance companies will perpetrate terrible crimes upon their sick patients, which it is their job to protect.

Instead of protecting, they will drop you when the policy needs to change hands from an employer to you personally, as did my life insurance.

Even worse, they will pay for years and then find some obscure small print to stop. Then, as if stopping payment isn’t bad enough, they suddenly claim overpayment for years that must be returned, with me to the tune of $20,000 as with Reliance Standard. Way to kick a dead horse people.

I really don’t know how you people sleep at night.

Finally health insurance will reject life saving procedures and diagnostic tests, such as PET scans which define whether I am in remission or not. The health industry also dictates where I can receive my medications making what was once a simple task of going to the pharmacy impossible due to mail order processes.


Anybody who doesn’t think these companies need to be seriously policed are mercenaries.

If you’re concerned I’m biting my tongue, I’ll be sure to tell you how I really feel later.

1 comment:

Anonymous said...

Hey girl...I hear you..We have been fighting with our insurance company for over a week now cause I need my maintenance drugs and my insurance company doesn't want to pay for my Cell-cept. They now make a generic brand and want me to use that even though it hasn't been on the market that long, they want me to wait till my organ is failing,before they're going to cover the cost of the script. It started when express scripts called to say my 3 month supply was going to cost me $2,000.00 out of pocket.I can't afford that,especially every three months even now with the doctors note to override them it's still going to cost me $200.00 out of pocket every 3 month, and that doesn't even include the rest of my scripts......
Soory Hill I just had to scream about it.....