One woman’s struggle with the health care system.

Funny how we always seem to think that there would be a better time to get sick. A rational person would know that there never is a good time. However, in January of 2004 I found myself thinking this very thing.

I’m on a cruise ship with my fiance’s family. While sitting at a blackjack table with my future brother-in-law, I notice that I am slowly losing the vision in my right eye. Later that night, when I am completely blind in my right eye and suffering a pain that cannot be alleviated, I sit on a barstool on a rocking ship watching fat men trying to win a hairy chest contest.

This was a really good time to be blind, but a really bad time to get sick and I was going to ignore it and enjoy this cruise if it killed me.

The next morning, after taking my self-prescribed four Advil, we are ready to disembark and I seriously consider calling the ship’s doctor to beg him to remove my eyeball. He can use whatever instruments are available to him. A spoon. I don’t care. I am in so much pain I can feel the insanity creeping in. I’m wondering if I’m going to die from eye pain before I make it home. Chris, my fiance, is telling me to stay calm. Stay calm? Please.

We board the plane to take us home and I pray that my eyeball will pop out and end this misery. I could catch it and keep it in the vomit bag I’ve pulled out of the seat in front of me and take it to the eye doctor in the morning. I’m out of Advil. Who has got Aleve? Anybody have Tylenol? Scissors?

One eye on the clock

At home, Chris sleeps while I watch the clock with my one good eye. I have never wanted a Monday morning to come so badly. I start calling my doctor’s office at 7 a.m. It’s not until 8 a.m. that I have a nurse on the phone. I live 10 minutes away. My doctor isn’t in on Mondays, she says. I don’t care. I’ll let the janitor take a look at me at this point. She fits me into the nurse practitioner’s schedule at 9:45 a.m. An hour and 45 minutes. My God, I think. A lifetime.

I am in my doctor’s waiting room at 8:30. I am ushered into an exam room at 8:45. It doesn’t always work that way, but my experience has been over the last two years that if you show up early you are likely to get in early. The nurse practitioner cannot see a thing in my eye. She has no idea why I have this eye pain. She is going to get me a referral to an ophthalmologist across the street. I get an “emergency appointment” for 1:30. Three and a half hours. That’s two lifetimes away.

I am in the ophthalmologist’s waiting room at 10:30. As if they didn’t know any better, I’m ushered into an exam room at 10:40. After several turns of switching the lights off and on, eyedrops that sting like hell and a couple of really blurry eye charts, the ophthalmologist tells me exactly what I don’t want to hear. He can’t see a thing wrong with my eye. And like a wife who can no longer tolerate Wednesday night bowling, I ask him, “Are you kidding me?” He isn’t. And much like a husband who doesn’t like explaining himself more than once, he gives me a look. He shines more light into my eyes, flips the lights on and suggests that maybe I just didn’t realize how poor my eyesight really is. A ridiculous suggestion for such a professional, I think. He’s not going to help.

So I ask him what is the next step? Isn’t there a closet here somewhere full of sample pain relievers that can get rid of this absolutely unbearable pain? No. He cannot give me pain medication. You don’t get pain medication when there is nothing wrong with you. I ask him one more time. What do I do about this pain? His response is that he can send me to a neurologist if I want to go, but that I just need to go home and lie down and take some more Tylenol. I let him know that I want the referral to the neurologist before I turn this entire freaking exam room upside down.

After charging my insurance company $475 he instructs the receptionist to give me the telephone number of a neurology group across the street, in the building I just came from. I’m there in seven minutes.

I’m not even sure I know what a neurologist does. I sit in the waiting room and I see assorted pamphlets. What You Need To Know About Parkinson’s Disease. OK. Janet Reno has that. That’s what old people get and it makes them shake a lot. I don’t shake. That’s not me. I don’t have Parkinson’s Disease. Why am I seeing a doctor who would have patients with Parkinson’s Disease? I am pondering this and more when my name is called and I am escorted into yet another exam room. I give a brief medical history to a nice nurse, but mostly I want to focus on my medical present. This excruciating eye pain and blindness.

The neurologist walks in. He is young. I guess I was expecting an old neurologist, but since I had seriously considered self-mutilation only 24 hours ago, I would take Doogie Howser if I had to. He looks up from my new neurology file and asks me if I have had any trouble swallowing in the recent past. I am immediately disappointed. I sigh, a really big, totally exasperated sigh. And then it hits me like a ton of bricks. Yes. Yes, I have had trouble swallowing. In the past year I had nearly choked at the dinner table more than once. In fact, I made it a habit to always have a drink with me whenever I ate anything for fear of choking. I figured my bites were too big, or that like everything else I did in my life, I was eating too fast. Yes, I tell him. As a matter of fact ... He had been in that exam room with me all of four minutes by the time he had me figured out.

I have Multiple Sclerosis. He wants me to go next door to the hospital for the first of a five-day course of IV steroids. The eye pain and blindness are caused by the swelling of my optic nerve. I have optic neuritis, which is a common symptom of Multiple Sclerosis.

This was spinal tap

He continues his explanation, but I’m already off in another world, sitting in a wheelchair, being moved to a corner, drooling and asking for crayons or soup. My life is over. My mind wanders back to him and his lips are moving, but I can’t hear anything. I leave his office with a handful of prescriptions for IVs and paperwork for testing to take to the hospital and then I am sent to the “check out” counter. Do I have insurance; they need a copy of my card; my co-pay is $10. I look at the invoice: $840. Wow. No wonder everyone’s mother wants them to be a doctor.

So, here I go. Here we go. Me, my friends and family. This MS diagnosis is going to take a village.

I have to have an MRI and my girlfriend Tracy comes to the hospital and sits in the room with me as this machine pounds out a deafening beat while it scans my brain. Then my sister Melanie drops everything and comes to the hospital and we stare at the IV bag with its slow drip, neither of us knowing what to expect. Then Lynn and Karla take turns sitting through this IV process that I am now all too familiar with. And my fiance, Chris, takes his turn.

Chris has to be there for the most difficult part. He is in the hallway when they wheel me out of the room where the spinal tap was performed. This Is Spinal Tap, we had laughed to each other when they wheeled me in. It didn’t take long to realize there is nothing funny about a needle being inserted into my spine. And it really wasn’t funny when we learned from the fluid they removed, along with the pictures of my brain from the MRI, that, yes, I definitely have Multiple Sclerosis. I am told that I am lucky. For some people it can take years to get a positive diagnosis of MS. Some people have the symptoms, but not the tell tale lesions on the brain, or the bands in the spinal fluid. Funny, I think. I don’t feel lucky.

Because I am lucky enough to have a firm diagnosis, I can be put on medication right away. There is no cure for MS, but you can take one of four drugs that they hope will keep your symptoms from coming back so that the disease doesn’t destroy your ability to walk or think or do lots of other things you just assume your body will always do. Just a final round of blood work and the nurse will come to my house and teach me how to give myself shots right at my very own kitchen table. Shots? All four of these available medications are self-injected. You just call the drug company and give them your insurance information and they mail the medication right to your front door.

So, I leave my new neurologist’s office with the pamphlet What You Need To Know About Multiple Sclerosis.

More tangible costs

During that week of my diagnosis I learned that my insurance card was no longer just the piece of plastic that was hidden beneath my driver’s license. It was my golden ticket. It was proof that I was worthy of receiving medical treatment. There was no question as to whether or not I would be sent to the hospital for the necessary IVs and brain scanning and spinal tapping. It meant that I was most probably employed and that, presumably, I could afford any procedure my doctor prescribed. Because of this golden ticket, I’m going to be OK.

I started my new job only three months ago. I sat in a conference room while a human resources specialist ran through the benefits of my working there. She gave me a benefits handbook and told me to take it home and look at it when I needed something to put me to sleep one night. We laughed and talked about the really important stuff like where my workstation was in relation to the break room. After I read there and signed here and got copies of this and that, I was officially an employee. I took all of the information she had given me to my new desk and shoved it in a file drawer where it would lie, untouched, for three months.

During the weeklong process of symptom treatments, I am thinking a million different things. I’m thinking about the times my arm or leg would go numb and I had just assumed I had slept wrong. I’m hoping and praying that this MS isn’t genetic and my kids don’t ever have to go through what I have been through this week. I’m wondering if I’m going to be able to go back to this new job I really like. I had been thinking about the emotional costs of having this disease. But faster than you can say “Multiple Sclerosis,” I was faced with the more tangible costs.

Drowning in a sea of bills

Within two weeks of my diagnosis I was drowning in a sea of hospital bills and insurance paperwork. It was time to call the office and have someone open that file drawer and send me the insurance information I so naively set aside.

Primary Care Visit: $320;

Me: $10 co-pay.

Ophthalmologist Visit: $475;

Me: $10 co-pay.

Neurologist Visit: $840;

Me: $10 co-pay.

Insurance: $1605;

Me: $30.

My golden ticket has a new home in my wallet in front of my ATM card.

Hospital, Outpatient IV Day One: $160.

Hospital, Outpatient IV Day Two: $210. (Day two didn’t seem different than day one.)

Hospital, Outpatient IV Days Three, Four and Five: $712.

Insurance: $0.00 ; Me: $1,082. (I have a deductible.)

Outpatient MRI: $4,625.

Outpatient MRI: $500 per incident deductible. (Per incident? What does that mean?)

Lumbar Puncture (This Is Spinal Tap): $2,100 and, again, the $500 per incident deductible.

Insurance: $4,380; Me: $2,345.

Neurologist Visit to get test results, discuss course of action: $840;

Me: $10 co-pay.

Radiologist, MRI: $320. (This person read the MRI results, a separate bill than the hospital bill.)

Doctor, Lumbar Puncture: $710. (This is the guy who performed the procedure.)

Insurance: Not sure; Me: No idea.

Now that we have the MS diagnosis, my neurologist wants even better pictures of my brain, so I undergo another MRI.

MRI No. 2: $3,200 plus the $500 per incident deductible.

Radiologist to read MRI: $450.

Oh, and that final round of blood work came back and it seems there is a problem with my liver counts. They are too high and I cannot start taking this very important MS medication until we find out exactly what is wrong with my liver. I see a liver specialist.

Liver Specialist: $610; Me: $10 co-pay.

The liver specialist feels it is necessary to do a liver biopsy to get to the bottom of the abnormal liver counts.

Liver Biopsy: $2,800 plus the ever-popular $500 per incident deductible.

Anesthesia: $900.

The pathologist that looks at my liver tissue: $600.

Insurance: No clue; Me: Overwhelmed.

Now that we have better pictures of my brain, we see more lesions than we saw on the first MRI. The neurologist now wants a full body MRI so that he can see if the MS has invaded my spine as well as my brain. This is an MRI that takes about five hours and they will put me to sleep because no one can be in the tube that long without freaking out.

MRI No. 3: $9,200;

Anesthesiologist: $3,200;

Radiologist who reads MRI: $720;

Insurance: The notices are cluttering the floor of my car; Me: In denial.

No golden ticket

By most standards I am a normal, hard-working, intelligent person. And I cannot, for the life that’s left in me, begin to understand the flood of bills filling my mailbox every single day. I have bills from the hospital. I have bills from doctors at the hospital that I have never heard of. Bills from doctors that have studied my brain and touched my liver tissue that I would never recognize if I passed them on the street. I have bills from radiology groups, anesthesia groups, a gastroenterology group and daily “notices” from my insurance company. The insurance isn’t paying for this and I owe that. Then there are letters disguised as bills that say “this is not a bill” with a note to keep this non-bill for future reference.

And don’t even get me started on the prescriptions. There are IVs I have administered in the hospital, IVs that a nurse brings to my home and administers while I lay on the couch. There is the medicine that the other nurse brings to my home and teaches me how to inject. And don’t forget the pills. Along with the IVs and the shots there is a trio of pills that I take so that I don’t twitch uncontrollably, don’t fall asleep unexpectedly and don’t feel an urge to hurt myself or others unintentionally. And of course, the vitamins. The vitamin A/D combo is suggested for those of us with MS, so of course, I have to have that. My insurance carrier categorizes drugs in several different ways. Sometimes there is a small co-pay. Sometimes you pay 100 percent. Like I said, don’t even get me started.

Why am I telling you all of this?

Because most people are fully unaware of the price tag that comes with sick. I have learned from friends, family, co-workers and the occasional fellow patient in a waiting room that most people are of the belief that sick doesn’t happen to them. Sick happens to somebody else. You feel sorry for them and you go on with your life relieved that you are, and always will be, healthy. We believe that because we have our golden ticket, that if sick does come calling, which it probably won’t, we are armed with the weapons that health insurance provides us. And because there really is no good time to get sick, you quickly realize that your insurance card is more like a few sections of Monday morning’s newspaper that you are going to cover your head with in a two-hour downpour. You’re glad you have it, but after a little while, you’re just not getting the coverage you had hoped for.

I am not telling you my story so that you can seek out any particular doctor or hospital or insurance carrier. I should say that the care that I have received, except for one really rude ophthalmologist, has been excellent. I have never questioned the quality of my care and I am grateful for the treatment I have received.

When I talk to people about my unexpected foray into the medical world, they are often times shocked. “A nurse came to your house?” “You had how many MRIs?” “It cost how much?” I am finding that, like me, lots of people are more interested in where the soda machine is at work than whether or not they have a per-incident deductible. And never mind the deductible. What type of short-term disability plan do you have? If you find that you are unable to work because you are blind in one eye and newly diagnosed with Multiple Sclerosis, will you be paid a percentage of your income until you are able to go back to work? What if you can’t ever go back to work? Is there coverage for that?

Hospitals’ and doctors’ billing departments, along with their collection agencies, really don’t care what illness you were diagnosed with or that because of that illness you are unable to work. They don’t care that your insurance has paid for some of the services provided to you. They want to be paid for all of those services. After you have received their services, no matter how grim the outcome may be for you, they expect to be paid. In full. Right now.

It certainly doesn’t sound like interesting reading, but I suggest that you take that benefits handbook out of your desk drawer, from under the front seat of your car or wherever you put it away. Because sick could happen to you. And it’s not going to happen at a good time.

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