Tuesday, August 15, 2006

Most Difficult

I remember vividly the first time I was asked “What is the most difficult thing about being a diabetic?” I was sixteen. And I remember saying, with unfettered conviction. “I hate the shots and the finger sticks. They make my skin lumpy and calloused.” I was confident that the physical inconveniences were the worst things I had to bear.

By that time, I had been a part of the American Diabetes Association's Youth Congress for several years and had fought along side other volunteers to mandate coverage of diabetes supplies in Massachusetts. I had an all too vague, disconnected – teenage – understanding of the cost of my diabetes. I was covered under my parents’ health insurance plan. I knew nothing of deductibles and co-payments or cost ceilings or limitations around preexisting conditions. What I knew was that 8 years of shots and finger lances had dealt me a body that looked different.

Over the years, the answer to the “What is the most difficult part?” question has changed too many times for me to count. Ask me today – ask me tomorrow – the answer will likely be different. This disease and my body’s reactions to it change so much from day to day, hour to hour, minute to minute. I sometimes feel like a top being spun repeatedly by a rambunctious six-year old – I never quite get a good solid, balanced spin.

But since I left college and started working, there has been one difficulty that rears its head with disconcerting frequency. As the years have worn on, it’s become the most common answer to the question. The cost. The expense. The dollars that it takes to stay well and to deal with the ever-changing physical challenges diabetes presents. And the worry that I can’t afford to be as well as is possible.


How do you decide whether you need 50 or 100 more strips than your insurance is willing to cover - when the costs of the strips is an additional $50-100 dollars that your budget can’t accommodate?

How do you decide whether you really need a yearly dilated eye exam – when your insurance only covers one every two years?

How do you decide which supplies you REALLY need to renew regularly – and which ones you can make last?

How do you wrap your mind around the idea that over $500 of your monthly budget will be used to simply keep you alive? Not nourish you – or make you stronger – just keep you alive.

I’m not angry about the cost of diabetes – I’m just frustrated by it. It’s a challenge that I hadn’t anticipated.

I knew early on that my life would be filled with physical inconveniences and mental obstacles that I’d have to maneuver around and over – but I guess I’ve always assumed I’d be able to afford everything I need when I need it – that I wouldn’t have to worry over my next month’s supplies or the cost of doctors’ visits. I have always had a good job – with health insurance coverage. I have never spent carelessly at the expense of my health. But in the past three years, I’ve been forced to make choices – compromises – to ensure that I’m giving myself the BEST possible care. I’ve learned to conserve, to recycle, and to think creatively.

More importantly – I have learned to become an even more effective, aggressive and persuasive advocate.

I have learned that the first “no” from an insurance company is not the final answer.

I have learned that most doctors want to give their patients the best care and they’re willing to work with you to make that happen.

I have learned that sometimes you lose. Sometimes, even the most persuasive argument pales in the shadow of the big-business that is the healthcare industry. And in those times, you pay or you compromise. And, I think, for the most part, we pay – because compromise is simply not acceptable when you’re bargaining with your eyesight, or your nerves, or your heart, or your LIFE.

How much am I willing to pay? Am I willing to give it all up to be as healthy as I can? I hope I’ll never have to come up with answers to those questions – though I fear that someday I might.

Until then - everyday, I get up. Everyday I live. Everyday I test my bloodsugar 12 times a day. Everyday I brush my teeth, brush my hair, get dressed in something I like. Everyday I also wear an insulin pump. Everyday I kiss my boyfriend, feed the cat, go to work. Everyday I take an aspirin, cholesterol medication, thyroid medication. Everyday I come home and sleep in my bed. And everyday, I wonder what the next day holds –because it surely holds more than diabetes and all of this worry. The next day holds the promise of something great – something that transcends cost and concern (faith, love, a cure?). I hope I have the courage to let go in those moments of promise and enjoy them – because, in the end, they’re far more important than insurance plans, and co-payments, and pre-existing conditions – in the end, they’re everything.


Scott K. Johnson said...

Hi Nicole,

This is an incredible post (again).

I too am frustrated by the out of pocket costs that we are forced to swallow.

The insurance coverage keeps getting worse, yet costing more. Hitting us for more money, yet covering less than they did last year.

I get upset that I have to make a choice between paying some bill versus paying for some D related medication.

And you can't convince me for a heartbeat that those test strips still cost them as much to manufacture now as they did 20 years ago. Why hasn't the patient price gone down at all?

A very well written post, and something that is often on my mind as well

Sandra Miller said...

To echo Scott-- indeed, a well-written post.

Your entry tackles one of my greatest fears for Joseph-- that someday, we (or he) won't be able to afford the best possible care.

The disease is frightening enough on its own.

Why do we have to fear this, too?

Shannon said...

Excellent points and post all around.

I wish I could make it easier for you :)

Kerri. said...

I can empathize. The cost of this disease is just as financial as it is physiological. I heard someone refer to diabetes once as "the rich man's disease." I don't disagree entirely. To make the best attempts at tight management, we oftentimes must revert to the most expensive options: pump therapy instead of MDI, testing 10 times per day instead of 4.

Beautiful post, Nicole. As always.

(sidenote: I miss RI. How the hell are you?)

Nicole P said...

It really is maddening.

This week has been particularly trying - given the very large bill I have from my pump company sitting on the counter and the ongoing argument I'm having with my insurance company over the coverage for those supplies.

I have that Cyndi Lauper tune "Money Changes Everything" running through my head like wildfire...

Gail Rae said...

Oh, man, more than familiar to me, Curious Girl! Thank you for this post! Thank you for deciding to give it wider latitude in PCParade.

kim said...

Wow - great post. Mine post was on health care costs, also.

I remember when hospitalizations were covered 100%.

When there were no co-pays for meds.

And if the doctor said you needed something, the insurance companies said, "How fast can we pay for it".

You KNOW those test strips have to cost PENNIES to produce, just like that expensive cholesterol med is probably 25 cents when you get down to it.

The pendulum can't swing much farther, a change is going to happen because things can't go on like this too much longer.