Month: <span>September 2007</span>

Calling yourself a caregiver is good for you and makes you a better caregiver.

The National Family Caregivers Association commissioned a study from The Caregivers Advisory Panel in 2001 to learn about the impact self-identifying oneself as a caregiver has on caregivers. Information about the study is on the NFCA web site at “NFCA’s 2001 Survey of Self-Identified Family Caregivers”. It’s good material.

You can download the complete survey from the NFCA’s web site.

Caregiver Tip: It’s important to say the words, “I’m an MS Caregiver.” Chances are, you’ll do a better job because of it.

Caring for Yourself

It’s Sunday.

Theologians and philosophers have wrestled long with an odd problem. They, like many who suffer or who care for someone whose life is limited by a disease, wish to figure out how to make three accepted truths true at the same time.

They seek to explain the unexplainable. For me, at this point in my life, Theodicy has become a philosophical distraction. It’s like a Rubik’s cube for the theologically minded. Fun to attempt, but once solved it does nothing to make one’s life better. Nor would a solution take away the pain of life.

The three truths that cannot be simultaneously true are: 1) God is omnibenevolent or all good, 2) God is omnipotent or all powerful, 3) Bad things happen.

Most accept that God is all good and all powerful. And we all know well that bad things do happen.

“Life is hard,” we hear. John Wayne supposedly took the truth one phrase further saying, “Life is hard, especially if you’re stupid.”

We all make bad things happen for ourselves. But it also seems, more times than not, that bad things happen without cause.

Just as no one yet knows what causes an MS patient’s immune system to attack the myelin of the body’s own neurons and destroy nerve cells, no one knows either why other bad things happen.

Theodicy is a red herring, a philosophical distraction pulling attention from the real issue at hand. I can be, as Elvis said, “taking care of business,” or I can waste my time angry at an unsolvable problem which is best left to professional theologians.

This works for me: God is here. Recall your worst experiences. Think about them in terms of God’s location. Where was He? I can’t prove it (I think that’s why they call it faith), but I believe God was there.

When you’re angry because you’ve ripped the front tire off your wife’s wheelchair and, well, you were tired of pushing it in the August heat, anyway, so there … God is there. When you hear the diagnosis, God is there. When you’ve done all you can, given all the medicine and you feel helpless and useless because you can’t stop your loved one’s pain, God is there.

He is present when the worst things happen. Does He make the bad stuff stop? Usually, not. And while I’ve not decided what it is exactly that He does here or how He does it, I do believe there’s enough evidence in my own life to suggest that He really is here.

Like an optical illusion that cannot be resolved in the dark, questions of Theodicy really do not matter apart from the interest generated by the conundrum they provide. Solving the problem of Theodicy will not make life better or more bearable. But for me, knowing that God is present does.

Now, having stated my present thoughts about the problem presented by a good, powerful God and a world full of evil and disease, I’ll admit I’ve often been caught in efforts to resolve Theodicy, not as an intellectual puzzle, but because I needed to work on a solution so that I could better understand my own faith.

As they occurred, different circumstances in life have driven me to try to understand them. There have been times when my efforts to resolve Theodicy’s dilemma have absorbed my best efforts. I’ve dumped my anger and energy into trying to understand how evil can exist if God is good and powerful.

I was angry when my wife was first diagnosed with MS. “It’s not fair, God, she’s too good for this!” and “What right do You have, God …”, etc.

But like one who grows frustrated with a Rubik’s cube and sets it aside having grown weary of the struggle, I’ve quit trying to resolve the unsolvable. The effort there is pointless and wasted for me.

What does matter now and what I find to be helpful, is the notion that God is here in the middle of it all and not off watching us from afar. God is here.

In my darker periods, I’ve spent many evenings sitting outside beneath the stars wondering, “why doesn’t He do x or y?” “What does He do way out there beyond the edges of matter?” I found it very easy to see God as a confounder of life when I gave in to the temptation to focus on a resolution to the philosophical problems presented by a God who is omnibenevolent and omnipotent, while bad things happen.

But I’ve always been able to list many more good things that happen than bad. And I’ve learned it’s harder to be actively angry at a God who is near than one who is far away, doing nothing as He sits outside the universe watching us with an experimenter’s interest.

Occasionally, I’ll find a smile on my lips that sneaked up on me. It happens when I think to myself, “God is here.” Of course I frequently jump to the question that God’s immanence begs, “What’s He doing?”

Who knows? But relaxing in the thought of living in a gracious universe in the presence of a loving God is better than devoting time to solving the theological puzzle of Theodicy.

Caregiver Tip: Allow faith to be a source of strength.

Theology of Caregiving

Caring Today Magazine, LLC publishes Caring Today. You can purchase a 1 year subscription to the hardcopy magazine for $12.95 on the web site. I’ve not yet read the magazine, but I do like the information available on their website. The information is practical, personal and enlightening.

The focus of the website is on caregiving for people with all types of illnesses and needs. The results of the “Caring Today/CVS Pharmacy Family Caregiver Insights Study” are available online. The study of 500 caregivers offers a more positive perspective about caregiving than many may expect. For example, 59% of caregivers surveyed report an increase in the quality of relationship with the person for whom they care. That’s a good thing.

Caregiver Tip: Remember that being a caregiver can actually strengthen the relationship you have with the one for whom you care.

Online Caregiving Resource

I called the health insurance company’s 800 number today to check on the status of the Provigil coverage review. The inquiry was quick and easy because I had the case number handy (remember the caregiver tip: keep good records). The coverage has been approved for another 12 month period.

I’ll write a “thank you” letter to the Coverage Review Board.

I wonder why some medications require no coverage review, while others like Provigil, Aricept and Betaseron do. Generally, it seems the more a drug costs, the more likely it is that the insurance company requires a review.

I enjoy math and have played with a few numbers lately. It’s no secret that health care is expensive, but when you look at the details, the costs can shock you. Amazing, too, is that the costs for a particular drug are apparently different depending upon who does the buying.

I’ll begin with the cost issue. Let’s start with gold and use it as the standard. According to’s 24-hour Spot Chart for Gold, the high price for 1 ounce of gold on the New York gold market today, Sept 7, 2007, was $700.10. That’s our gold standard, $700 per ounce. For our purposes, we’ll call anything that costs $700 per ounce expensive!

A one month supply of Provigil at 2 x 100 mg tablets per day is 6000 mg. per month. 6000 mg is a bit more than 0.19 ounces or about a fifth of an ounce. 60 tablets of Provigil costs me $429.16 out of pocket.

That means Provigil costs about $2,124.80 per ounce, making it more than 3 times as costly as solid gold at $700 per ounce.

Is that not insane? It’s a white, powdery chemical compound compressed into tablet form. It’s patented, though, and there are no generics or “therapeutic substitutes” available yet.

But that the cost varies depending upon who is buying the medication is what really strikes me as odd.

The pharmacy charges my insurance company less than they charge me for the medication if I purchase it out of pocket without insurance coverage. My personal cost (without coverage) is $429.16.

My insurance company pays only $316.88, or $112.28 less per month than I would pay if I didn’t have insurance. As an individual consumer, my out of pocket costs for the Provigil would be $1,347.36 more per year than my insurance company’s costs for the drug.

I could almost buy 2 full ounces of gold with the savings my insurance company receives from my pharmacy! I just scratch my head and wonder.

Caregiver Tip: Remember to write “Thank You” letters to the doctors and review boards.

MS Medications

I am not a doctor. Nor am I a radiologist. Being a caregiver, though, makes me incredibly curious about the medical details related to my wife’s multiple sclerosis. I like to know what my wife’s doctors are talking about and I’m fascinated by how “fearfully and wonderfully made” we are.

So much can be discovered with a little light. As a caregiver, you’ve probably seen a doctor slip the top edge of a Magnetic Resonance Imaging (MRI) image into the clip on a light box. The MRI results I’ve seen look like large photographic negatives. If you remember the old x-ray pictures, you’ll have the right idea.

The light box, usually mounted on the wall of the examination room, illuminates the MRI by shining an even field of light through it. At home, without a light box, when I want to look at one of my wife’s MRI images, I hold it up to the light and do my best. All I know about what I’m looking for is that the white spots are probably not good.

Guess what I found online. An illuminating article is available on The Radiology Assistant” website.

Frederik Barkhof of The MR Center for MS Research, of the Radiology Department of the ‘Vrije Universiteit’ Medical Center in Amsterdam has provided a review of his presentation for a Neuroradiology teaching course for the Dutch Radiology Society. Barkof’s presentation was adapted for “The Radiology Assistant” by Robin Smithuis, general radiologist in the Rijnland Hospital, Leiderdorp, the Netherlands. It is fascinating stuff!

Barkhof’s presentation focuses on the role of MRI in the diagnosis of Multiple Sclerosis. The information available at is excellent and filled with examples which explain actual MRI images.

If you’ve ever wondered what those white spots on an MRI of the brain mean in the diagnosis of Multiple Sclerosis, explore the article on “The Radiology Assistant”. While it may not help with the specific details of the MRI’s you have an opportunity to see, the article does provide a broad background for MS caregivers and encourages an appreciation for what radiologists and neurologists look for and see when they look at an MRI.

Caregiver Tip: Learn as much as you feel comfortable learning about the medical issues related to multiple sclerosis. The more you understand multiple sclerosis, the more comfortable you’ll feel asking important questions and the more confident you’ll feel in your role as caregiver.

MRI MS Diagnosis

After spending almost an hour on the phone with our pharmacist, my wife’s neurologist’s office and several employees of our health insurance company, I took a break before writing a letter to appeal the insurance company’s decision to deny the neurologist’s appeal of the insurance company’s refusal to authorize payment for another year. I wrote a letter requesting a coverage review.

Caregiver Tip: Always make and keep detailed notes of dates, times, names, comments, phone numbers, everything that happens, and keep copies of all correspondence when communicating with insurance companies. Good notes will make it easier the next time the issue arises.

Each of us in this phone and letter dance knows Provigil is FDA-approved for narcolepsy. It is not FDA-approved for Multiple Sclerosis.

However, studies by the drug’s manufacturer, in addition to consistent reports of MS patients, and the clinical experiences of neurologists all support that Provigil is indeed an effective treatment for Multiple Sclerosis-induced fatigue when taken in small doses.

My insurance company automatically takes the financially prudent way out. “It’s not FDA-approved for Multiple Sclerosis. You must submit your appeal in writing,” and, “if you make a voice appeal and are rejected, there is no additional appeal available for you.”

The neurologist, the pharmacist, the insurance company and I have done this annual dance a couple of times now, but this year something has changed. This year the insurance company denied the doctor’s appeal and asked me to request a coverage review of the decision. I wonder what convincing evidence I might provide that the neurologist cannot conjure? (In a later post, I’ll share my appeal letter as a sample of what insurance company’s seem to look for when they perform coverage reviews.)

I’m told I may wait up to 30 days for the insurance company’s final decision regarding this coverage review. But it won’t be that long. One thing I appreciate about my health insurance company is that they work quickly when doing coverage reviews.

And in practical terms, I know this coverage refusal was probably an automated response. One of the insurance company’s computers is probably programmed with this simple logic:

If prescribed medication is FDA-approved for this disease then approve coverage, else decline coverage.

Fortunately, I can speak with real people when the computers say, “no”.

In the meantime, I’ll buy the Provigil from my pharmacist ($439.16 a month) while the insurance company decides to cover this medication which so effectively treats my wife’s MS-induced fatigue. The thought of paying an additional $5,269 per year for a single medication gives me pause and I wonder how long I could afford to do it.

Instead of fretting about that though, I remember I live in a God-graced universe. An illogical, but faith-filled, approach to managing concerns about things I can’t control.

From my own experience, I offer these tips for coverage reviews:

  • Be friendly and polite when you speak on the phone.
  • Keep detailed notes of everything (names, phone numbers, fax number, addresses, etc.)
  • Use the Internet to find research that supports your request for coverage.
  • Consider that initial coverage decisions are often computer-generated. Talk to people.
  • Maintain a good relationship with your pharmacist.
  • Avoid fretting about potential problems. It will wear you down.

Health Insurance Coverage

Caring for a person with Multiple Sclerosis is steady work.

Because Multiple Sclerosis is a progressive neurological disease in which the effects of neurological damage accumulate over time, the work required of an MS Caregiver when a patient is first diagnosed is usually not as difficult or demanding as that required for an MS patient who has had the disease for a long period of time.

If the person for whom you care has just been newly diagnosed with Multiple Sclerosis, this site is for you. It will help you get your feet on the ground and begin thinking of the things your future may hold. Preparation is important. Instead of being frightened when the oxygen mask falls from the overhead compartment (read I’m an MS Caregiver), by preparing now, you can know ahead of time what to do to take care of yourself while caring for an MS patient.

If you’ve been in the trenches for a long time caring for a significantly disabled MS patient, this site is for you. You know how important it is to take care of yourself. You know it because along the way you’ve not been afraid to grab your oxygen mask first, before you help your fellow passenger. Or you know it because you’ve neglected your own needs. You’re gasping for air, dog tired, frustrated with your life and feeling guilty because of it. You need to take care of yourself.

So welcome to my blog! I’ve started because I want to share what works for me as I care for my wife. I hope you’ll be able to learn from my successes and failures. I’ll share them both …

Caring for Yourself