Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Sjogren's syndrome

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.

Lucky

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Sitting in the hallway of Mass Eye & Ear’s Cornea Service, as doctors, fellows and technicians in white lab coats stride back and forth, back and forth. Before, all the seats that line the wall were full. Now I’m by myself. A cranky teen sitting next to me earlier complained to her mother about prisoners being seen here. “Why do they have to go to the good hospitals?” she griped. “Why do they have to take my spot when they’ve committed a heinous crime?”

Doors open and shut with a swish and ca-chunk. I’ve had my medical history taken, my vision checked, my tear production dip-sticked, my eye pressure tested for glaucoma, my cornea thickness measured. I’ve been here for nearly three hours, having made it through all the preliminaries, and now I await the big cornea specialist.

This is the first time I’ve ever had my Sjogren’s (another autoimmune disease that can accompany scleroderma, which damages moisture producing glands) carefully assessed, because the dryness in my eyes is causing light sensitivity and blurring toward day’s end. After my travel episode with conjunctivitis in March and resultant corneal abrasions from irritating eye drops, I am wary of putting any new medications in my eyes without a thorough evaluation.

The cranky teen told me her first appointment here took five hours. I have made the mistake of parking in the Mass General Hospital garage, which does not accept validation from Mass Eye & Ear, even though the institutions are right next to each other, and I realize this visit is going to cost a small fortune.

I wonder if they’ve forgotten about me.

I check my email on my laptop. At least I had the sense to bring it along so I could get some work done. Could I have gotten so absorbed in responding to a client that I missed hearing my name?

“Evelyn?” The man’s voice is loud, authoritative. Finally, the specialist has called me in. He is tall, trim, graying. No glasses, maybe wears contacts. Two women fellows accompany him into the exam room. He apologizes: my chart was put in the wrong place and he’d been looking for me for the past half-hour. Sigh.

More drops, more lights, more gentle prodding to see if my eyes exude any tears. After he checks, he has the fellows look, too. It’s a teaching institution, after all, and I am a teachable moment. He types on the computer for what seems endless minutes as the fellows, now three of them, watch in silence. Occasionally he asks a question to clarify a detail. I feel like I am being tested. Have I given the right answer? Is he ever going to talk to me?

Finally he finishes his notes and swivels around in his chair. He knows his stuff. This man teaches ophthalmology at Harvard Medical School. We discuss options to relieve the dryness from Sjogren’s, which include blocking the ducts that drain tears from my eyes with tiny silicone plugs to increase the moisture level—like stopping up your bathtub, he explains—but apparently my ducts are “pouting” because they are too irritated and wouldn’t hold the plugs well. The whole idea is so new to me that I’m actually relieved not to have little stoppers inserted in my eyelids. It’s hard enough for me to let anyone touch my eyes at all or put in drops.

So, next best option: steroid drops to heal the inflammation and then a round of Restasis, which quiets the autoimmune process that has tightened the spigot. He’s forthright—the Restasis may not work to increase my tears, it takes four to six weeks to kick in, and it can be irritating. He recommends refrigerating the drops before inserting them to minimize side effects, also going a week on the steroid drops, first, to ease the inflammation. “And don’t rub your eyes,” he cautions. “It’s not your fault that you do, but it doesn’t work to produce more tears and it makes the irritation worse.”

Four hours have passed since I first arrived. I am exhausted from the long appointment and complicated prognosis, even as I appreciate the expert consultation, and overwhelmed by the prospect of yet another very expensive medication which may or may not be effective, just as our health insurance coverage is about to change to a higher prescription co-pay in July.

I find the cashier at the garage and catch my breath. Anything over three hours will cost a whopping $48. But by a miracle, the cashier assumes I’m a Mass General patient and only charges me $10, even without a stamped validation. Okay, thank you.

I take the elevator to the floor where I think I left my car. Then I get confused. Did I walk up an incline or down to get to the elevator after I parked? I’m watching the signs and not my feet. Whomp! I trip over a curb and smack wrists, elbows and knees on concrete. It hurts. A lot. But by another miracle, I’m able to get up without any severe pain that would indicate fractures or broken bones. Even as I feel tears welling that won’t come, I’m also amazed and relieved. I find my car and check all the points of contact. My gloves, pants and coat have protected me. No cuts, no scrapes, no torn clothes, just achey. All I want to do now is get home.

I turn on the ignition and the tire pressure gauge glows yellow. I first noticed it this morning, as I was leaving to drive into Boston. A quick visual check revealed no soft tires, and I didn’t want to miss the appointment, which had taken weeks to get. So I risked the drive in, through two hours of heavy traffic, and just made it to my appointment on time. Now the car rides evenly down the ramp to the exit, and I assume it’s just a finicky sensor, so I keep driving.

An hour later, closer to home, I call our tire dealer on my cell to see if she can do a quick check. No problem. And a good thing, too, because it turns out that I have a screw in the left passenger tire that is causing a slow leak, but the tire could have blown any time. It can’t be patched. I pull out my credit card to pay for the new one. “You were lucky,” she says.

I guess so.

Image Credit: Illustration from “God’s Providence,” from the 1705 English edition of Orbis Sensualium Pictus by John Comenius, considered to be the first child’s picture book, originally published in 1658 in Latin and German; Boston Public Library. Thanks to www.publicdomainreview.org.

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.

Tender Is the Grass

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Is it possible? Has spring finally arrived? After this bitter cold, seemingly endless winter, it’s hard to trust. But the signs are visible.

Sunday. Sunny, 55 degrees. The Red Sox opened at Fenway on Friday (Never mind that the Brewers swept the three-game weekend series—we’re just getting started, and Ortiz is still wearing a Boston uniform.)

Crocus_4-6-14As I walked Ginger round the block Sunday afternoon, I noticed tender green grass shoots peeping through thatch. Purple and fuchsia crocuses yawned on the sunny side of the street. Even in our shaded back yard, one lavender bud had valiantly pushed its way toward light.

At last. It’s the second week of April, and the forsythias are not yet aglow. But the sun is brighter, the sky, bluer, and only about a foot remains of the last, stubborn, dirty pile of snow out back.

It’s the season of promise and not-quite-there-yet.

Neighbors walk by in jackets and sunglasses. Around the corner, kids’ bikes litter a front lawn. On my route with Ginger, I reluctantly wear my mid-weight winter coat, insulated gloves and wool hat. It may be well above freezing, but 55 is still chilly for me and my Raynaud’s. My finger ulcers are finicky in the spring and need protection and mindful nursing. It will have to get into the mid-60’s before I can switch to a shorter wool coat, high 60’s or even low 70’s before I can send my winter sweaters to the dry cleaner and go without gloves.

I’m also still tending my light-sensitive eyes in the wake of complications from conjunctivitis. The infection of two weeks ago has cleared, but an allergic reaction to the eye drops left me with mild corneal abrasions in both eyes that required more medication. I can now look at my computer screen without discomfort, but reading and sunlight remain tiring. It is just never simple with scleroderma and, in my case, the added complication of Sjogren’s, which renders my eyes, nose and mouth too dry to begin with.

I’ve been extremely frustrated about this over the past week. Writing and reading are such a huge part of my work and daily pleasures that my struggles with vision have been both aggravating and frightening. Why did something as mundane as conjunctivitis have to turn into such an ordeal? What if my vision doesn’t return to normal? How long will this last? Do I always have to get an infection of one sort or another when I travel?

For all these reasons, Sunday’s promise was most appreciated. Those bright green sprigs of grass, the joyful crocus blooms, the barely visible buds on tree branches—just knowing that baseball bats are smacking over home plate once again, whoever wins—all remind me that winter really does end, even in New England.

I will retire my down coats and wool sweaters and don rayon and cotton once again. The days will continue to get warmer, on average, and longer. Leaves will unfurl and shade the street. My eyes will fully heal.

And, if we’re really lucky, the Sox will bring home another World Series championship this season. Welcome back, spring.

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

Outtakes

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One of the strangest aspects of my scleroderma is calcinosis—a condition that causes small bits of calcium to form under my skin and eventually work their way out. From time to time, a calcium pit will push through, leaving a small hole, like a tiny window into my finger, that fills with new skin in a day or two.

Sometimes the piece is sharp and painful as it migrates to the surface, and other times, it’s just a nuisance, a condition I’ve long learned to recognize and manage with careful hygiene to be sure an infection doesn’t settle into the resulting ulcer. The calcium tends to form at pressure points, in whichever fingertip surface I use the most often.

Over the past decade, calcinosis has also begun to occur in the bridge of my nose, where my glasses rest. I can’t wear contacts, because my eyes are too dry from Sjögren’s, another scleroderma complication. I’ve switched to very lightweight Silhouette frames, which are expensive but create barely any pressure. Still, the calcium forms. These pits need to be removed surgically, or I risk ulceration in this very delicate skin that is stretched too thin by scleroderma to heal properly. Not fun.

So it was, last Monday, that I headed in to Boston Medical Center to visit my ENT plastic surgeon, for a consultation about removing yet another calcium pit from my nose. I hadn’t seen him since 2009, when he skillfully extricated the last offender from the inside, instead of having to cut through from the outside. The time before that, I’d seen another surgeon who struggled with my fragile skin when closing the external wound.

He knew me right away—I guess my nose is pretty memorable—and made a quick assessment. The pit was very close to the surface and actually sticking to the underside of my skin. He could remove it from the outside or the inside. It would only take 15 minutes. In fact, he could do it right then. His associate also took a look and concurred. Easy enough to do. How did I want to proceed?

Now, I have never, ever, made a decision to do any kind of outpatient procedure on the spot. Especially on my face. Especially without Al along for moral support and to help me get home in case I got woozy afterwards. But as I sat there, debating and discussing pros and cons with the two specialists, I made up my mind.

It didn’t make sense to extricate the calcium pit from inside my nostril, a much more uncomfortable procedure, since it was stuck and could tear the outer skin in the process. If he cut from the outside, I’d just have a couple of stitches. And if I did it right then, I’d save time.

Yup, that was the bottom line. I really didn’t want to have to come back another day, get psyched up for the procedure, and spend yet a second morning or afternoon dealing with this. Plus, it could be weeks before I’d get into their schedule again, and the pit was stretching my skin so much it could possibly break through and not heal properly in the meantime. So, I said let’s do it.

Four shots of local anaesthetic—like sitting still for a bee sting, was his sympathetic assessment as I winced and grit my teeth—a slice, some grinding against bone and tugging on the stubborn remains of the calcium, a couple of stitches, and he was done in 15 minutes. The removed deposits, which he showed me floating in a little orange bottle that would be submitted to the lab for assessment, were like grains of sand, just like the ones that come out of my fingers. At least I’m consistent.

I felt a bit shaky as I left, but victorious. It was done. And almost routine. Has it really come to this? Even the oddest experiences with this disease are now just a matter of course? Sure, why not cut into my nose while we both have the time and take out the damn piece of calcium. Might as well be practical and just get it over with.

My nose is still healing, but it only hurt for a day. The stitches continue to absorb and will come out on their own. The worst thing that happened afterwards was getting a rotten cold, probably from the ENT waiting room, that knocked me out for the second half of the week. Two calcium pits popped out of my fingers, perhaps out of sympathy for their compatriot. Otherwise, it’s been just another week.

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.

Smelling in the Present Moment

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Our golden retriever, Ginger, may be going on 14, but her sense of smell is still in tact. Whenever we go for a walk, she leads with her snout close to the ground, sniffing every leaf and lamppost, inhaling dank secrets.

Which has me musing: How fascinating that we take in smells with every noseful of air. If we breathe through our mouths, we simply breathe. But through our noses, we get more than just essential oxygen—we get a world of sensation that resonates deep in our psyches. Smell, as any writer knows, is the strongest way to evoke memory. For a dog, olfactory memory is all the more powerful, I suppose.

And musing: How it is that our aging Ginger, who is nearly a centenarian in dog years, can still smell a whole lot better than I can? She has, of course, the canine advantage. But I’m also gradually losing my sense of smell.

Some of this is due to genetics. Both my parents began to lose olfactory acuity as they aged. This almost caused a calamity once, when my dad decided to cook sorbet from scratch and left the pan of boiling sugar on the stove unattended. The pan caught fire, igniting the cabinet above the stove. Fortunately, my parents called the fire department in time and their house didn’t go up in flames.

But some of the problem is due to scleroderma, as well. My nose has narrowed and tightened. In addition, Sjögren’s has significantly dried up my nasal passages. I irrigate my nose and sinuses twice daily with a saline solution, which helps my breathing and limits nosebleeds, a real problem in winter. But I still can’t smell as well as I once could.

Very frustrating. I used to have a really acute sense of smell—to the point that I would tell Al about some odd odor and he’d look at me as if I were crazy. This skill saved us some major kitchen disasters of our own. Years ago, in our first home, I began to notice a sour smell. After some investigation, we discovered that either mice or chipmunks had been storing dog food kibbles in the grid behind our refrigerator. Condensation had leaked over the kibbles, which began to mold. Not pleasant.

A few years ago, a plastic surgeon told me he could widen my nostrils to their original dimensions and “take a little off the top” of my rather prominent Herwitz nose to make it easier to breathe. I gave this some serious thought for a while. But so far, I’ve decided not to go the extreme makeover route. My nose may be big and narrow, but it’s mine, and I’m pretty attached to it.

Just recently, I’ve discovered another, much simpler strategy that appears to improve both my breathing and ability to smell—meditating. If I can settle into that quiet, still, contemplative place in my mind (not easy, but I’m working on it), slow down my breathing and just be present, my nasal passages widen, I can breathe deeper and smell more of the world around me again.

Ginger seems to know this, intuitively. Like all dogs, she lives in the present moment all the time. For me, walking her is a form of meditation itself (provided no other dog passes us in the opposite direction). So, I need to take my cue from her: Slow down, pay attention and smell the roses—or whatever else may line my path.

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.