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."
Monday, November 3, 2008
I wish everyone could experience the benefit I have of truly wondering if they’re going to survive.
I also wish, every health care professional would spend a day in their schooling, lying in bed, being shuffled around on a stretcher, face covered, completely anonymous, and being a body, instead of a person.
I’m going to tell you more, just because I’m in that kind of mood.
Sometimes, I wonder if my life had gone differently. I wonder if I would have become addicted to drugs, and become pregnant at nineteen with another drug addicted teenager. I would have no money, no degree, probably no man by now, and a child.
I still would have gotten cancer at twenty-three, but the situation would have been very different.
I wouldn’t have had made friends in the medical field. I wouldn’t have had health insurance and disability insurance.
I could have had a minimum wage paying job, welfare, Medicaid, food stamps, and a child to support. I would have been hustling on the side to provide.
This is a very scary idea for me. What if I didn’t have parents, family, friends, and a community to step in and care for me? How could I have struggled with cancer and provided for my child?
I’m not the type of person to look in the past and think what if, but I know people like this exist. They’re just not me.
The child would have gone into foster care. It would have been inevitable. I’ve spent over 90 days total as an inpatient. Where would he have spent the night without his mom?
I wouldn’t have been able to travel to treatment or afford the $0.50 copay for my medications. I would have taken the minimum treatment available, since $500 extra a month would be too much for supplemental medicaid.
I have trouble accessing medco to receive my medications now. I have to have my doctor write specific prescriptions for a 90 supply good x 4 refills or one year.
Do you know how long and how much energy it will take to order the twenty or so medications I take daily?
Anyway, as a single mother, I would have accepted treatment locally. No amount of financial aid could get me a car, make me able to drive it, and put gas in it while being able to eat. I would have lost my job due to excessive absences. I’d have to chose between electric or oil and healthcare.
I would die. I’d die like I was in the third world. I don’t know if Americans do not see this or they do not believe it could happen.
It does, daily.
It scares me. I often fear for myself, but I’ve never been as scared for myself as I am these people with no access to healthcare. How many people die waiting for treatment because their health care won’t cover it?
There are problem numbers somewhere.
I think with all the drama in the worldwide financial markets, we seem to have forgotten that social security and medicare are set to be a bankrupt system by the dates 2012 and 2020 respectively.
Where exactly is everybody on this issue? I can guarantee you I’m looking into the future and seeing a scarier sight than wall street.
If broke welfare moms can’t get treatment now, if ambulances get turned away from hospitals, and patients die in waiting rooms, then where exactly will we be when the government provides nothing?
It’s guaranteed, we will all inevitably get sick. I think it’s time America cut out the nationalism and admitted defeat in some areas. Nobody can be right all the time, it’s time to tuck our tail in and admit we need an overhaul.
If you need to have an anxiety attack over this, feel free to watch Micheal Moore’s “Sicko.” I tried to watch this, but I had to stop due to chest pains and an inability to breath. The health care system scares me.
I don’t think medicares.
Silly me, but I’m pretty sure it’s medi-doesn’t-care. McCain’s stance of giving a $5000 rebate and taxing benefits won’t even cover my deductable. With co-pays, no-pays, and no-ways I’m out of luck.
How many people die because they never make it into the system? They never get diagnosed. They go to the Emergency Department with complaints of fatigue, bruising, inability to swallow and any other one of a hundred vague symptoms that could indicate cancer.
Thank you msn.com for printing this yesterday:
Emergency care: If you're facing a life-threatening situation, hospital emergency rooms are required to evaluate and stabilize you before asking about your ability to pay. A very limited number of hospitals are required to provide such care for free if you're poor, but the vast majority can bill you (and may hound you aggressively with collection agencies).
That's why if your situation is anything less than critical, you may want to explore alternatives other than emergency-room treatment. Many uninsured Americans wind up in the ER with noncritical situations, simply because they don't know where else to go.
With the information here, you now know some of your other options. Finally, three other things to consider:
• Medical coverage through your auto insurance. When you have a good health plan, you typically don't need the medical protection offered on your auto insurance policy. If you're uninsured, though, this coverage could pay your bills if you or your passengers are injured in an auto accident.
• Negotiating cash discounts. Some readers have reported being able to win discounts from hospitals and doctors when they agree to pay cash, while others say they've met resistance. One reader thought he'd be granted a 40% cash discount for his wife's labor and delivery, only to have the hospital renege on the deal and turn the unpaid 40% over to a collection agency.
• Bankruptcy protection. If you're hit with catastrophic medical bills, consider consulting with a bankruptcy attorney sooner rather than later. Bankruptcy laws have recently been toughened, but people with incomes below the median for their states can still erase medical bills and most other unsecured debts.
See the rest yourself at http://articles.moneycentral.msn.com/Insurance/InsureYourHealth/AsurvivalGuideForTheUninsured.aspx?page=2
The ER is not a diagnostic clinic. People die unable to attain medical care. We don’t know how many people this happens to.
It is very easy to fall through the cracks of the medical system.
I do know it happens. It’s happened to me.
I’ve had to call in favors to be found. I hate doing this for a couple reasons. One, I don’t want to admit I can not do anything on my own, and second, I know most people do not have the luxury of calling a friend who just happens to be a prominent, well-connected oncologist.
What about them?
I’ll tell you what happens to them.
We’ve all seen the blips on the news about some poor patient who died in the waiting room of an ER awaiting care.
People stare. Their mouth drops. They ask each other how did this happen? They’d say, “You think those doctors or nurses would’ve gotten their asses out there.”
I dare you to walk into one of those waiting rooms.
I’d sit behind my nice bulletproof glass with double locks to triage patients. I’d take one at a time, and leave the door open to the ER (not the one to the waiting room) so the big guys outside could protect me. When it was time to call somebody in, I’d open the door a crack and holler a name, ready to be charged and threatened.
People would pound on the doors. They would holler that they were there first. They’d try to push their way in. Some days, it was a downright mob scene.
The waiting room is unsafe. People are ready to snatch health care workers up and kidnap them to get care.
I’d have crackheads pounding on the windows, trying to signal to whoever cut themselves that day to get the goods.
I’d shut the blinds.
The waiting area belongs to the four gigantic guards with tazers and guns.
On average, over two hundred people would go through this ER in a day, and it’s considered a small “community” hospital, it just happens to be in the Bronx.
It is possible to lose someone. If you have waited an excessive amount of time, go find the admitting clerk or the Triage nurse or both.
Why are you waiting so long? That’s terrible. I’ll explain it to you.
Since people do not have health insurance, they do not have primary care doctors. If something goes wrong with these people, such as a runny nose, sore throat, sun burn, stomach pain, fever or vomiting, they don’t have a regular doctor to call for treatment and their prescriptions.
They go to the ER where they cannot be denied a work-up, but the ER is for EMERGENCIES. The symptoms above should be treated at clinic visits. But there’s no free clinics, so the broke, destitute, addicted and in pain are sitting in the waiting room.
Then there are the people who just simply have no health insurance, but still need to be treated: here are the blue collar families, the immigrants making minimum wage, the welfare mom trying to get by, and the homeless or foster child.
These are all people who should be treated elsewhere. They are not having an emergent health problem. They are having a health problem that they cannot get treated, and that in their mind, constitutes an emergency.
Some hospitals have “fast tracks” for just these clinic cases, but these get bogged down. Be prepared to wait over 4 hours. We recommend you get a primary care provider.
But why wouldn’t these people? All they have to do is make a phone call.
The hospital does not require money upfront prior to treatment. A Doctor’s office may, and if they don’t, they know who you are.
ERs cannot ask you for money until you’ve received your prescription or treatment, at that point, they’ve given the patient what they need. The hospital can’t get it back.
The patients often never pay. They lie about their name and social security number. The hospital is forced to take the bad debt and write it off.
Here’s a quote from one of my best girls, “It (the inner city ER) looks like the after party at the club, but it’s only the people that lost. There’s blood all over the floor and people are clutching their wounds.”
All the sudden those red, white, & blue t-shirts and bandanas aren’t as important as they seemed when the thugs all went charging out of the club with their toys ready to prove their manliness. It all equalizes in the ER.
How much time and expenses do you think our Emergency Rooms spend to treat these people?
My guess would be enough to make a cut in a plan governmental for universal health care. Last I heard the number was 34 billion dollars yearly, but nobody is standing up and denouncing the process.
Thirty-four billion dollars would make a significant dip in the 125 billion the government estimates it needs for universal health care. They’re all ready giving it away in right offs.
We could slowly, but surely, remove ourselves from Iraq and Afghanistan, every day we’re out of there would be a billion dollars in our pockets.
The US could start slowly with universal healthcare for children, extending the age of insurability under parent’s policies, removing the term “pre-existing condition” in recognition that it’s unconstitutional.
We could demand more oversight in the treasury. If my husband managed our books the way the US does I would have flagged his credit years ago and separated the bank accounts to punish him for mismanagement. It’s amazing the amount of money that “disappears.”
I think, if you’ve seen this, if you’ve seen the poor suffering, waiting in pain, dying quietly treatmenless for a treatable disease, your silence is your acquiescence. If you see this and do nothing, you are allowing it.
I know we are all trying to work within the boundaries of a bad system to provide the best care possible, but really, times up. Time to get out of the box.
Death by poverty or Death by inability to pay, These things should not happen in the United States.
Clearly, to me, this practice is unconstitutional. Not having access to health care directly interferes with our most basic right to life.
Everybody looks over this right. It is the first right, the obvious right. It is the right we are ignoring in our health care system.
Our health care system is unconstitutional. It favors the rich and is unaffordable to the poor. The health care system does not treat all as created equal.
One of my best friends, Samneang, is reviewing insurance policies. She’s a beautiful, successful, independent Manhattanite businesswoman. She called for my approval of her choice. She selected a program that cost $250 a month, what was affordable.
She didn’t know what a deductable was (the cost you must pay upfront before the insurance actually works), it was $10,000. She is sick and in need of treatment, but she can’t wave her magic wand and find $10,000.
Our over strained system is not treating the patients as effectively as possible. We will continue to lose lives daily. Walk into any urban ER and they will confirm my story. No amount of new staff will alleviate this problem since the flaw is in the system.
Later, I’ll tell you Samneang’s story. If anybody can drag herself up out of her past it’s her.
For now, MS Money has a whole page worth of articles dedicated to this problem. See http://articles.moneycentral.msn.com/Insurance/InsureYourHealth/InsureYourHealthDyn.aspx?cp-documentid=11937318
On a funny note, one of my very favorite ER nurses passed this along: Just a few etiquette tips if you do need to use the ER
Pretty funny! It's a wonder anyone would even consider being any kind of
WE ROCK 8-)
NURSE BURN OUT
1. Don't tell me you have abdominal pain as you eat Doritos's in my triage room.
2. If you come to the ER by ambulance, the first thing that I will ask you
is how you are getting home. No, we don't have people on staff to drive you home, and don't
tell me you don't want to 'bother' one of your family members at this
hour. You had no problem bothering 911 for the back pain you've had for 3 months.
3. You don't get to pick your own IV site. This will irritate me and I
will probably miss your IV on purpose and start your site in the place I wanted
to initially to prove a point.
4. 'Butterfly' is not an IV size, this word signals me to put in a larger bore needle in.
5. Nausea is not a reason to come to the ER. If you are not in severe pain,
are not vomiting or pooping your pants in front of me, your butt goes back
to the waiting room.
6. How can you have the worst migraine of your life, but be able to yell at
me about the wait after you just put down a magazine you were reading?
7. Don't ever say things like, "I usually get 4 mg of Dilaudid." Requesting your med and dosage will prompt me to squirt out half of the medication
before I inject, and then lie about the dosage.
8. If you are allergic to Tylenol, Toradol, and Motrin, I have already
assumed that you are a drug seeker
9. If you came to the ER having a family doctor appointment that same day,
I will make sure that you are still in the department well past the time of
your original appointment
10. I don't care if you are a neighbor of the GI specialist. Unless he
drove you to the ER himself, you can't be that friendly
11. Just because, 'My Doctor sent me here,' does not mean you get
right back to a treatment room. This tells me you are a pain in the ass, and he's
pawning you off
12. The louder you whine, the bigger size IV needle you get
13. Foley catheters cure pseudo-seizures. They also cure intoxicated people
14. If you are on more than 2 medications at home, bring a list. Don't
say, 'You know, that little white pill.' I'm not a pharmacist
15 RN is not synonymous with waiter/waitress.
16. Don't bitch about missing breakfast when I'm on the ninth hour of
my shift and haven't peed yet
17. What gives you the right to complain about your sore throat for a week
while I have diarrhea from the antibiotics I've been taking for pneumonia
and I'm still at work.
18. Broken toes are not an emergency. We'll make you feel stupid by
putting a little piece of tape down there and kicking you out.
19. I am currently inventing a trap door system in triage to be triggered
when you say the word 'toothache.'
20. Cover your mouth when you cough/belch. This is common courtesy. When
you neglect to do this, I am tempted to fart in your room, and then close the
21. If you tell me you have fibromyalgia or chronic fatigue syndrome, know
that I'm rolling my eyes and thinking you are a loser.
22. If you list Haldol, geodon, Xanax, trazadone,and ativan as allergies,
don't tell me you have no psyche history.
23. Never sign in with chest pain because you were too embarrassed to write
'penile sores' or 'foul smelling discharge.' This will piss me off that I bumped you ahead of
other people and I'll make your visit horrific.
24. Although you've been in the ER four times this week, we cannot list
the ER doctor as your family physician.
25. Do not talk to me while I'm trying to listen to your lungs.
26. Don't tell me you have no money for medicine while you have a carton
of cigarettes in your purse (next to your cell phone,) and each of your seven
children are playing their own PSP's.
27. Gravida 7 (7th pregnancy) at age 22 with various fathers means you're