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KosAbility is a community diary series posted at 5 PM ET every Sunday and Wednesday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic.  There are two parts to each diary.  First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and/or ask general questions about disabilities, share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.
On July 4th, 2004 I collapsed while filling my wife's car at the local gas station.

I awoke in the local hospital two days later to discover that I had had a massive stroke which affected my right side, my speech was slurred and my brain was slowed to a crawl.

An intern noticed an angry red patch on my left arm, called for a biopsy and within a week, the resident oncologist advised me that I had a cancerous tumor in the form of a neural sheath sarcoma. He then sent me to the UCLA Medical Center where a famous surgeon would operate to remove the tumor thereby saving my life. (At the expense of losing my left arm)

Thus began a tale of wonderful treatment from some medical professionals and of unbelievable mistreatment by the administration of health care in America by both government and, in particular, the bloodsucking insurance industry who wrap themselves in the language of care without meaning a single word of their own slogans.

This diary sets out the latest chapter in the continuing saga.

I live with neurological pain. A pain that doesn't respond to aspirin, or paracetemol, nor for that matter, to morphine and it's derivatives. I also take anticonvulsant drugs for the seizures caused by the first bout of chemotherapy several years ago, and my neurologist suggested, a couple of months ago, that increasing the dosage of my Topamax might help with the pain.

It did not work! In fact, in combination with two beers, it caused me to have a seizure, or two or more. And then, while hospitalized, an intern, who neglected to read my chart, then gave me intravenously, an anticonvulsant which I am allergic to!

This meant that, on release after a week, I lasted for two days and immediately had several more seizures and was carted off to hospital for another ten days.

During all the time I was in a hospital bed, no-one saw fit to check my chart so I did not get my three times a day cream for my facial rash (a direct result of the Topamax) I still look like a teenager with acne.

Note: I would like to thank the dinosaurs of the Republican party for holding up the funds for computerizing medical records. My plight is a direct result of hand written, cumbersome paper files which, in my case are quite large and difficult to read.

When I checked with my oncologist a week after release from hospital, I was informed that I appear to have leukemia (CLL) once more. The treatment plan involved two weeks of aggressive doses of three drugs during the latter part of July.

Then I am now informed by Social Security that I make $900 a year above the cut-off to qualify for extra help in paying for my prescriptions. So much for paying in to the system for more than 30 years since my arrival from Hong Kong.

I have no intention of sending the letter below, but it sure felt good to write it.

July XX, 2012

The Death Panel
Social Security Administration
P.O. Box 2000
Richmond, CA 94802-1791

Re: Your Denial Letter Dated Month XX, 2012 to Me

Whatever you are,

I need your invaluable advice once more.

Now that the system has seen fit to deny me help, I want to know how you suggest I should proceed from here.

Should I:-

1. Give up my apartment to pay for the $300 to $400 per month needed for drugs you will not help me pay for? This will mean living on the street.

2. Simply stop eating to pay for those drugs.

3. Or just go without the drugs and hope I survive without them and that the pain will go away by itself? (my chosen course at the present time)

I really don't expect to get a reply from you. For more than 7 years through 3 cancers, several heart attacks, and major epilectic seizures, you have been the worst disease of all. Another Government department working exclusively for the major corporations.

What about us people?

Sincerely and with much love

CJ Campbell

I am more puzzled than angry. I wonder when the country became a "big-noter" with no ability to back up its claims either abroad or at home.

In the first decade of the 21st Century, the end of the Bush era saw the nation become a laughing stock around the world, the butt of many jokes and an ally of dubious reputation at best. At home, only the wealthiest of Americans have been able to rely on government for help of any kind, and these are the very people (corporations) who need help least.

Stand Together

We who stand proudly on our own,
who help each other
when we see that help is needed,
reject the notion of the right
that man should stand up
for himself alone

We believe in each other
holding fast each to each
so that when one of us falls
another bends down to grab
a flailing hand to make sure
that we stand together

The treatment is easy to take. IV's have become part of my life. My doctors and nurses, and in particular, the candy-stripers are marvelous and make a difficult task almost bearable.

On the other hand, the administration of health care in this nation is mired in the past, run by profit seeking insurance ghouls and politicians in the pockets of big business. The new health care laws go a small part of the way but until we get single payer health care, Americans will be paying through the nose for an inferior product.

We must do better, not for me, but for the next generation. I shudder to think of the world we will leave our children if Mitt, Cheney, McConnell and Boehner get their way.

An Orwellian nightmare!

Wish me luck



Update 8/2/12: Well, the treatment is over for the time being, the CLL is, apparently, in remission although I have lost another 10 pounds and have very little energy. I am now plagued by excruciating headaches, Doc wants to see me in a week to discuss solutions if they don't stop on their own. A good food and exercise regimen will fix the weight problem in a most delicious manner!
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