Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

managing chronic disease

Hidden Costs

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Just over a month into our new health insurance policy, and, although it could be worse, the view is not pretty. When the hospital where Al works was bought out last year, I had misgivings. I am not paranoid.

Aside from a four-figure deductible, which, I understand, is becoming the industry standard, we are now dealing with much higher copays for prescription drugs. Much higher. As in double or quadruple what I was paying previously.

I have four medications that are classified as “Tier Three,” which means that the copay is $100. This past year, on a monthly basis, one cost $25, one cost $35, and two cost $50 each. The new system requires me to buy a 90-day supply of one of these drugs, for $200, which brings the monthly cost to about $67. The other three cannot be purchased in bulk, so it’s $100 every time I need a refill.

It all works out to about $5,000 annually for these four medications, none of which have generic substitutions, all of which I need to stay healthy. I even checked out pricing on Canadian drug websites, but because these are all brand name drugs, there is no savings to be found.

So we’re stuck. In addition to this discovery, we also have learned that because the new policy started in July, but the policy year starts in January, we will have to pay the full deductible once again, starting in 2015, before we get any benefits from the plan for medical expenses. This is on top of premiums taken out of Al’s paycheck. Originally we thought his premiums would be lower than last year, but that does not appear to be the case.

Oh, and did I mention? The prescription co-pays don’t count toward the deductible, and there is no cap.

When you add it all up, it appears that this new policy will cost us at least $10,000, probably more, each year—and that’s just for me.

But there’s another hidden cost to the plan—and that’s time. Al and I both have made numerous calls to the health plan and pharmacy plan, just trying to understand what is covered and what isn’t. Then there’s all the follow-up on medications. To give just one example:

I have one medication that I’ve been taking for several years, with no problem under our former plan, that now requires pre-authorization. Okay, fine. I’ve dealt with this before. But we found out about the problem when the prescription bounced back at the pharmacy. This required a follow-up call to the doctor, to be sure she received the FAX with the request to submit the pre-authorization. Then I called the pharmacy plan to find out how long it would take: 72 hours.

All right, but in the meantime, I was out of pills. I called my doc once again and asked if she might have samples. Fortunately, she was able to give me a month’s supply. Her office is at the hospital, so Al was able to pick them up while he was at work, saving me a trip.

I went out of town last week on business and asked Al to follow up with the pharmacy. When I got home, he told me that they had not filled the prescription, yet. So I called the pharmacy to find out what had happened. They said the scrip was still on hold because it required a pre-authorization. Once again, I called the doctor’s office. The nurse told me they had sent in the forms the day I requested them.

Then we checked the mail. There was a letter telling me the request had been declined, because this was a brand name drug and there were other, cheaper meds that could work just as well.

The only problem, and this is why I had been prescribed this particular medication in the first place, is that all the other related drugs cause dry mouth, and I have dry mouth aplenty already due to Sjögren’s syndrome. So I called the doc’s office once again, informed them of the letter and explained the situation about why I couldn’t take those other meds. The nurse checked the pre-authorization file, and, of course, it turned out that no-one had thought to include that fact in the paperwork. So they will resubmit.

That’s just one prescription.

And there is more time involved for determining what my BMC doc visits will cost (they are included in our plan, but there is a facilities fee charge because they all work in hospital settings, and we have to apply for a “gap exception,” which requires proving that there is no one nearby who can perform the same service).

And extra research involved anytime any of us needs to seek medical services away from home.

There’s more to this, but I’ll stop here. You get the idea. Suffice it to say that, although I know a private-pay plan would cost even more, from what self-insured friends have told me, the reality is that we are taking a significant pay cut in our family income with this policy. I’m hoping to make up the difference with additional clients, but there are no guarantees when you freelance. The fact that I work for myself makes it easier to make all the research phone calls, but that’s time spent not earning.

Anyone who thinks that private insurers are making our health care system more efficient, think again. They’re only passing along more costs to the consumer, regardless of ability to pay. And the more complicated your health issues, the more you have to spend, even if your medical condition reduces your earning power.

I won’t be eligible for Medicare for another six years. And by then, who knows what benefits will still be available? Bottom line: Neither of us will be retiring any time soon.

Photo Credit: Peter Gerdes via Compfight cc

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com.

One More Thing

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As my family well knows, I have a bad habit of trying to squeeze in as many items on my to-do list as possible before I head out the door. I get a lot done, but all too often I run late—not horribly late, and I manage to make most appointments on time, but when the deadline is less rigid, I can slide five, ten minutes behind.

The problem is that everything usually works out fine, anyway, which just reinforces my obsession with getting that One More Thing done.

Except for Monday morning, when I had to catch a train to Boston to catch the bus to Logan for a flight to Kansas City on business. (Fortunately, this has a happy ending, but this once again reinforces my bad habit, as you’ll see.)

I was well organized for my trip when I got up, relatively on time (mornings are always hard, as my body is sluggish). My bag was 99 percent packed. Did my exercises. So far, so good. Stopped myself from catching up on news and Facebook, so I wouldn’t waste precious minutes.

Then came the fateful decision to do One More Thing. I had a family project I wanted to finish before leaving the house, which I needed to complete online from our secure network, that I felt couldn’t wait until my return from my business trip later this week. It took about 15 minutes. I had just barely enough time to eat breakfast, finish packing, get dressed and race out the door with Al to get to the train station.

Challenging under even the best of circumstances. But I was also upset with myself, because in the midst of finishing my One More Thing project, I thought I’d messed up the online form because I was rushing and couldn’t backtrack. As I finished shoving the last few items into my suitcase, my hands started shaking. This always happens when I hurry and get stressed. Totally involuntary and very frustrating—my coordination just gets worse.

So I ranted to Al all the way to the train. Fortunately, he is very calm when I freak out. As we drove up to the station, I could see the train waiting at the platform. I jumped out of the car, Al grabbed my bag from the trunk, we said a quick goodbye, and I ran as best I could toward the platform . . . only to watch the train pull away. As one of the conductors, standing on a coach staircase, slid by me, he shook his head and shrugged. Just another late, would-be passenger.

At this point, I started crying. There are many things in this world worth crying about, and this wasn’t one of them, but I was just so frustrated with myself. Al to the rescue (fortunately, he had waited to be sure I got on) with a big hug. Rather than go home and come back in two hours to catch the next train, which would have risked a tight rush to the airport, he drove me in to Logan.

Now, here’s where my One More Thing habit gets reinforced. The ride into town had the advantage of saving my hands from dragging my carry-on from train through South Station to bus to airport. We said a real good-bye when Al dropped me off. I made it through security in 10 minutes, bought a bagel and found a table where I could write before every space was taken later in the morning. And, to top it off, I found out through an email exchange about my One More Thing project that I’d completed the online form correctly, after all. No problem!

Next time I miss a train because I’m trying to do too much, I still hope my loving husband will take pity on me once again and save the day. But I honestly don’t want to cut it so close to the wire, for myself (too much stress) or for him. (Hear that, Al? Thanks again! Love you!)

It’s comforting to know that life usually works out, even when you think you’ve messed up. But it’s also good to remember that One More Thing can usually wait. (Hear that, me?)

Photo Credit: Éole via Compfight cc

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com.

“You must do the thing you think you cannot do”

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At the FDR Museum and Library in Hyde Park, N.Y., there is a wooden box with a metal handle. You can pull up on the handle to lift the hidden weight inside. The weight is as heavy as the steel braces worn by Franklin Delano Roosevelt to support his body while standing and walking, after his legs were paralyzed by polio when he was 39. The handle is very hard to move.

Freedom from Fear Hyde Park 7-27-14Whatever your politics (the arguments that raged 80 years ago during FDR’s presidency about the role of government in our daily lives versus unfettered free market capitalism could be cut and pasted into today’s news reports), Roosevelt’s struggle to overcome polio is one of the most inspiring stories I’ve encountered about facing down a chronic illness.

We visited Hyde Park on Sunday, the last stop in our week of day trips that included beaches, dinosaur tracks, the Nathan Hale Homestead, country roads and villages, a woodland hike and Shakespeare al fresco. Though I was familiar with some of FDR’s history and had visited the Roosevelt family home when I was very young (to our daughter Emily’s amusement, I kept remarking that it all looked much smaller than I recalled, undoubtedly because I was about three at the time), I had never understood the full implications of FDR’s illness.

In the summer of 1921, Roosevelt, then a rising star in the Democratic Party who had already served two terms in the New York State Senate, three years as Assistant Secretary of the Navy under Woodrow Wilson, and had been nominated for Vice President on the 1920 Democratic ticket with James Cox, went to visit a New York Boy Scout camp prior to his vacation on Campobello Island, Canada. While sharing food and water with the campers, he was probably exposed to the polio virus.

Not long after, as he was sailing on the Bay of Fundy, FDR lost his balance and fell into the icy waters. The next day, he began to complain of back pain. Within hours of going for a swim, his legs weakened. Three days later, he could no longer stand. He was diagnosed with infantile paralysis, known as polio, on August 25.

The diagnosis was devastating to FDR and his family. He decided to remove himself from politics that fall in order to focus fully on his recovery, but it took another seven years—seven years—for him to regain enough strength and stamina to reenter the political arena. He filled those years with a rigorous regimen of exercise to strengthen his upper body, hot springs treatments and swimming.

By the spring of 1922, he had learned to use the heavy steel braces that stabilized both legs from hip to ankle, locking his knees so they wouldn’t buckle, and was able to walk with assistance. He devised a nimble wheelchair using a dining chair with bicycle-like wheels, a vast improvement over the cumbersome wheelchairs of the day. In the family Springwood estate in Hyde Park, he designed a wheelchair lift worked with hand-pulled ropes, like a large dumbwaiter, that he manipulated to hoist himself between floors. He invited friends and family to keep him company, laugh and joke as he did his exercises, to lift his spirits and normalize the experience for his children.

Two years later, FDR tested the political waters and the public’s reaction to his disability by introducing New York Governor Al Smith as candidate for president at the 1924 Democratic Convention. Walking to the podium with the aid of crutches, he was met with a three-minute ovation—a remarkable outburst of support at a time when people with disabilities were all too often treated as weak and mentally defective, marginalized by their families and isolated by society.

In 1928, FDR ran for governor of New York and won the first of two terms in office, during which he pushed a progressive agenda to aid individuals who suffered in the aftermath of the 1929 stock market crash—policies that helped him to win the presidency in 1932 as the Great Depression deepened.

While his political acumen was key to his political success, FDR’s battle with polio is also considered by historians to be one of the most critical factors in his ability to connect with average Americans struggling to survive during that dark period. His wife, Eleanor, often called his disability a “blessing in disguise”—a deep lesson in patience and persistence, qualities so essential for a President who led the country out of the Depression and through most of World War II.

In FDR’s own words: “You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, ‘I have lived through this horror. I can take the next thing that comes along.’ . . . You must do the thing you think you cannot do.”

For more about FDR’s battle with polio, see this excellent article from the FDR Library.

Image: “BreakFree,” by Edwina Sandys, granddaughter of Winston Churchill, carved from segments of the Berlin Wall, outside the FDR Library in Hyde Park, N.Y.

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com.

Long Shadows

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At last. Sitting on the beach, in the sun, watching the waves roll in. I’m wearing shorts and a tank top, lots of SPF 50 sunscreen to avoid getting a rash on my photo-sensitive skin. I won’t be swimming, because the Atlantic is far too cold this early in the season, and the waters off Block Island, R.I., are chilly, and I have ulcers on my fingers that I can’t risk immersing.

But it feels good to be here. Even if the breeze is stiff and I have to pull on extra layers as Sunday afternoon deepens. Even if I can’t swim like I used to as a kid, jumping over the waves and body surfing until I turned blue and my teeth wouldn’t stop chattering.

So I sit in my beach chair and read a novel, do a little of the Sunday New York Times crossword, watch Al swim and dive in the surf. I take a nap and work on my tan (have to be careful with this, not overdo, given skin sensitivity). I wonder why the people next to us on the beach, with very loud voices, don’t realize that everyone within 20 feet, at least, can hear every word of their conversation, including how one of the men and two of his friends each won $500 at a craps table in Montreal and other fascinating details (for them, not for the rest of us).

Fortunately, I’m able to screen out their conversation when I read. And no one really seems to mind. On the beach, on a sunny Sunday, it’s live and let live.

As shadows elongate, we walk up the shore, collecting pebbles and even a few bits of sea glass—unusual for this beach, which is usually picked clean. I sit on a large rock as Al explores farther, my arms wrapped around knees to stay warm in the cool breeze, and watch a dad and his three daughters, all in wet suits, play catch with a pink-and-yellow rubber ball in the surf.

On our walk back, we pass a black-and-white mutt worrying a piece of driftwood, barking at its owners as they play in the water, then barking at the driftwood, then shoving the driftwood around with its nose and barking at it again. Someone has made a terraced sandcastle with smooth, rectangular walls; another has created a castle of sand globs and drizzles.

We eat dinner al fresco, across the road from sand dunes, deep turquoise ocean just visible beyond. We stop for an ice cream cone for Al and poke around the little shops. I find a scarf the color of sunset. We check on the Red Sox v Yankees score as the ferry pulls away from the dock for the hour-long trip back to shore. Our boys are ahead.

The day is a welcome escape from work and responsibility and so much sad and disturbing news in the world. On Monday afternoon, headlines announce the tragic murder of the three Israeli teens who were kidnapped more than two weeks ago, hitching home from school, and I sit at my computer screen and cannot concentrate on my writing. Our sunny, relaxing beach trip seems far away. I grieve for the parents and pray that cooler heads prevail, on both sides of this intractable conflict that could erupt at any moment. No good will come of more bloodshed. I pray that my eldest, Mindi, stays safe as she spends the remainder of her vacation in Tel Aviv.

If only we could all just go to the beach and, together, enjoy the waves, and the sun and a long, relaxing stroll as shadows grow long. Naive, I know. If only.

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com.

Red Sandals

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Right before Passover this past April, I went through my closet and gave away about a dozen pairs of shoes and sandals that I could no longer wear. I’d accumulated them over decades, and each set was a favorite.

But it was simply time to face the fact that the fat pads on my feet have thinned so much from scleroderma that I need a lot of cushioning, and my old favorites hurt. Most of them I hadn’t even considered wearing for years. I had just kept them because I liked them so much.

Hard to part with the shoes, and the idea they represented—that it’s still possible for me to walk with style. Recently, the only shoes I’ve been able to tolerate are two pairs of lightweight, fabric mesh Merrell clogs, navy and black, in which I can insert custom, full-sole orthotics. I’m grateful that these are so comfortable, but they really don’t go well with skirts and dresses.

Of all the shoes I gave away, the ones I parted with most reluctantly were a pair of red sandals with two-inch heels. Nothing like red sandals. They always used to give me a boost, height-wise and mood-wise.

So now, mid-June, it’s finally feeling summery for more than a day here in Central Massachusetts, and no red sandals, no walking sandals, no sandals I could count on for casual wear or work appointments.

I had scoured online shoe sites without seeing anything that seemed worth trying. So hard to tell, and with sandals, the foot sole is key because you obviously can’t insert orthotics.

The only real solution: Go to a shoe store where the staff still know how to fit your feet. This is not easy to find. But there is such a store about a 40 minute drive from home. I haven’t been there in years.

So, with an hour to spare between two appointments last week that took me in the right direction, I made a pilgrimage. The selection hadn’t changed much since my last visit. The show window and displays were full of all the predictable comfort brands, some attractive, some downright clunky.

One would think, with all of us baby-boomer women now at the age of sore feet, that someone out there would approach the question of how to design comfortable, stylish shoes with a bit more imagination. But apparently not.

Round and round the store I walked, picking up possible choices and pressing the foot beds with my thumb. Per usual, the nice-looking sandals didn’t have enough arch support or cushioning. The most comfortable walking sandals were $225 and really, really ugly—like a pair of shovels.

I was about ready to give up and leave when I circled around one more time. There, on the wall, was a pair of raspberry red Dansko sandals—two wide straps of faux snakeskin with silvery buckles on a cushioned, rubbery platform that was styled to look like carved wood, but much more shock-absorbent. Now, I had given away a similar, well-worn black pair, not as attractive, right before Passover, because the cushioning was just not thick enough and they were too loose and caused blisters (probably because my feet are much thinner than when I had purchased them at least five years ago, so they didn’t fit properly anymore, and the footbed was worn out).

But, on a whim, I tried on the sample. It fit. Perfectly. The salesclerk found the mate in the store window, and I took a walk up and down the aisle. No pain. The shoes rolled easily from heel to toe. Excellent arch support. Good cushioning. They even made me stand up straighter, something about the balance of the shoe.

And they were red. On sale.

So I bought them. The salesclerk assured me that I could bring them back within two weeks and get a refund if, after wearing them around the house (not outside), I had any problems.

Over the next few days, I tried them on at different times. Still comfortable. I could do stairs. I could walk on our wooden kitchen floor and on the concrete in the basement.

On Sunday, sunny, full of summer promise, I decided to commit. Out the door, with Ginger on her leash, around the block. Success! Then in the car, over to the art museum, on my feet walking around for an hour to view my favorite works. A little foot fatigue, but still good. No real soreness.

There are probably no ready-made sandals in the world that will ever solve all my issues, but this pair sure gets at thumbs-up for darn near perfect.

Oh, and did I mention? They’re red.

Image: June, 1975—Hydrangea by a Pond, Stencil-dyed paper calendar by Keizuke Serizawa (1895-1984), Worcester Art Museum

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com.