Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

managing chronic disease

Perchance to Dream

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I’ve been having some trouble falling asleep, lately. I go through these bouts from time to time, when I’m trying to do too much and my mind is overstimulated, or when I’ve sat up at my computer too late, or when I watch too much news. Some of the solutions are obvious (plan in evening down time! no computer after 9 o’clock! don’t OD on the latest political crisis!). But I’ve also decided to use regular guided meditation in the morning to help me calm my thoughts.

I subscribe to Headspace, which is a great app with many guided meditation series to help with various issues. When I was dealing with my horrific ulcers the summer before last and the surgical aftermath, the series on pain management was a real boon. This time, I’m meditating my way through the sleep series, which includes both practical advice for good “sleep hygiene” as well as a mind-calming meditation to be done in the morning that helps you sleep better at night.

I was skeptical of how this would work, but lo and behold, after about ten morning sessions, I started to fall asleep more readily. I am less intimidated by the prospect of needing to fall asleep, which is the insomniac’s hamster wheel, and more able to relax. (Of course, now that I’m writing this down, who knows what will happen tonight?)

In any case, the meditation has an added benefit. Monday morning it was cold here, a drop from the mid-60s on Sunday to a wind-chilling mid-30s (welcome to New England). When I started my meditation, however, I didn’t have on any socks, because I’m ready for spring and didn’t feel like it. Of course, that meant my feet were ice cold. I wondered if meditating would improve my circulation. Sure enough, by the end of my ten minutes of visualizing a warm glow filling my body from bottom to top, my toes were actually a little pink. Not toasty, but not freezing, either.

Years ago, I had read how meditation could help Raynaud’s. I once even tried some biofeedback practice to see if it would make a difference, but didn’t have the patience to follow through consistently. Here was yet another reminder that the mind truly does influence the body. And ten minutes of calm in the morning certainly beats that nagging voice in my head urging me to start thinking-planning-doing.

I don’t expect my sleep issues to disappear, but at least it feels more manageable at present. And my toes are happier, too.

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. Please view Privacy Policy here.

Image: Cris Saur

Countdown

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As of next Monday, I will be officially on Medicare. Getting there has been long anticipated. But the process has not been easy, as anyone who has gone through it can attest. The plans are complicated, the rules byzantine, the language seemingly designed to confuse (though more likely just written in so many layers that getting to the basic facts is like going on an archeological dig).

To figure this out, Al and I went twice to see a SHINE counselor here in Massachusetts (Serving the Health Information Needs of Everyone—who thinks up these acronyms?) to sort through all the options. I knew from the get-go to avoid Medicare Advantage plans, since these can significantly restrict physician choice through narrow networks. Living with a chronic disease like scleroderma, that was a non-starter for me. We knew we wanted to get a Medicare supplemental plan to cover what Medicare Parts A and B do not. And I needed to be certain that all my expert specialists would be included in the plan.

Fortunately, the best plan we were interested in, offered by Massachusetts Blue Cross/Blue Shield, does cover all of my wonderful physicians. I made sure to check with them as well as with the BC/BS customer service rep. The premium costs about $200 per month, but the plan has no deductible, no copays, and excellent in-patient and skilled nursing coverage. Any provider or hospital that accepts Medicare is covered. Given how much I spent on copays, alone, with employer health insurance coverage, that will be a savings. So that is one load off my mind (at least, unless the plan changes at some point).

The bigger issue has been wading through Part D coverage options for my meds. Learning what’s involved with these plans has been a huge shock. I certainly had read about issues for drug costs for seniors and knew something, in general, about the “donut hole” problem (which I won’t even try to explain here). But I was stunned when I realized how much I would be paying for some of my medications: one Tier 5, and four Tier 4s (or two Tier 4s and two Tier 3s, depending on the plan).

Even with the excellent help of staff at the Massachusetts College of Pharmacy and Health Sciences (MCPHS), which offers a free service to state residents to sort through all the Part D plans, I learned that we would be paying about $10,000 annually. And that includes falling into the catastrophic coverage category. This prompted me to bring up the issue to both my Boston Medical rheumatologist and cardiologist. So we are now reevaluating my meds and alternatives. We’ve come up with a new plan that will cost about $,4,500 annually—certainly an improvement, but still three times our out-of-pocket expenses under our prior insurance.

One could argue that this is appropriate. Shouldn’t we all be making cost-conscious consumer decisions for our health care? Problem is, the cost of my Tier 5 medication is exorbitant. It’s been covered by a patent for years, and is going off patent later this year. As a result (I learned from the Part D Medicare web interface), its negotiated monthly cost, which forms the basis of what is paid by the patient and Part D, has increased more than 100 percent in the past few years, from around $5,000 up to more than $11,000. That’s monthly. The drug isn’t costing more to make. The pharmaceutical company is milking the patent  before it expires and a generic becomes available—which could still be costly. As my cardiologist noted, if they find another, slightly modified application, the patent could still be renewed. This is common practice.

One way or another, we’ll make it work. But it is high time that the high cost of drugs in this country, especially for seniors who cannot afford them, should be regulated. All it takes is one look at a Canadian drug website to know that what we’re paying is ridiculous.

For more than a year, Al and I have been paying a hefty COBRA premium to retain our excellent health insurance, which I really need or we’d go bankrupt. We’ve been waiting and waiting until my 65th birthday to drop that expense for a much more reasonable monthly premium (Al switches over in July). But it’s still not clear to me, given the drug situation, how much we will save. And this makes me angry.

There are other countries on this planet that make comprehensive health care available for all of their citizens. Let’s get past all the scare mongering, clarify and understand the true costs, and seriously consider universal health care here in the U.S. What we have now is just a confusing, inequitable mess.

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. Please view Privacy Policy here.

Image: SpaceX

Chew on This

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Last week was one of those weeks when I burned up a lot of time going to, being at, and going home from medical appointments. Most were routine and anticipated, but one was not: a visit to my periodontist.

One of the rarer complications of scleroderma is resorption of tooth roots. As my periodontist has explained it to me, my body thinks some of my teeth are invaders and begins to attack the roots like PacMan (albeit much slower). I’ve lost four teeth to this phenomenon over the years. Two were lower rear molars that were simply extracted, and two others involved extractions and implants. My dentist has identified two other teeth that are endangered and has been monitoring them for years.

A couple of weeks ago, one of those teeth announced it was not happy, provoking unpredictable waves of sensitivity in my jaw that felt like a dull ache. I have no idea what caused it to spark. I was not pleased.

When I saw my dentist to get his opinion, he was quite candid. At some point in the not-too-distant future, I would need to go through the expensive process of another extraction, implant and crown. So I made a follow-up appointment with my periodontist to see what steps I needed to set in motion.

By the time I saw him last Wednesday, the tooth was calming down. He took a look and confirmed that my molar was, indeed, on the way out. But he also said that it was really up to me to determine when to take action. If the pain were tolerable or even reduced to background noise, I could leave it be until it inevitably got worse. I could also just have it extracted and skip the implant, but that didn’t make a lot of sense, given the fact that I don’t want to have any more issues chewing and swallowing than I already have (more complications from scleroderma and Sjogren’s Syndrome).

So, I decided to wait. Sure enough, a week later, the molar is relatively silent. I know I will undoubtedly have to deal with it over the summer, but at least I don’t need to jump.

This decision is made more complicated by the fact that I have to switch over to Medicare by the end of the month. All of the supplemental dental plans have a 12-month waiting period for the kinds of procedures involved—unless I stick with my current provider, in which case they might wave that waiting period, but I have yet to confirm.

Even with dental insurance, for which you pay a decent chunk of change, there is typically an annual benefit cap of about $1,000 or a little more. As my periodontist observed, I have to be really sure the premiums are worth it, given that what I’d receive is only about an eighth of what the process will cost. The net benefit is small.

While I’m fortunate to have the financial means to have options, the tradeoffs are infuriating. Why is dental insurance so lousy? Especially as you get older, keeping your teeth is as important to your overall health and well being as staying in shape. It’s not a vanity project. It’s about being able to eat comfortably and safely. It’s also about avoiding complications of infections and other serious dental health issues. But so many people cannot afford the care necessary to preserve their teeth that the simple act of smiling is a very visible marker of social class and economic disparities.

All of which is to say that as our nation wrestles with the question of whether and how to provide universal health care, we must make sure the conversation includes dental health care, as well. Our mouths aren’t separate from our bodies. We can’t just swallow the status quo.

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. Please view Privacy Policy here.

Image: Umanoide (And no, those aren’t my teeth.)

 

Women’s Imaging

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Monday morning. I am at one of my least favorite medical appointments: my annual mammogram. I am relieved to get through the test in a matter of minutes (even as it feels much longer when clamped in that sadistic machine). What strikes me most about this year’s visit is the new surroundings for the clinic, which has been relocated into a large medical complex. It’s the signage that gets me—a separate section within Radiology dubbed “Women’s Imaging.”

Why do they have to use a euphemism for Mammography? Is someone afraid that women are too embarrassed to go to a waiting area clearly marked for what we all know is screening for breast cancer? Do they think our sensibilities are too delicate to deal with acknowledging one of the major risks to women’s health?

I find it ridiculous. And demeaning. Being an intelligent health care consumer means being aware and informed about the realities of your medical conditions, treatment options and risks. It does not mean pretending or denying or ignoring that women have some specific health risks that merit our proactive attention.

I have made a conscious choice to follow my doctor’s recommendation for an annual mammogram. My mother had a benign cyst removed from her breast when I was in grade school. I suffer the discomfort because I want to know the results, even as the value of mammograms has come into question in recent studies. In particular, there are serious questions about whether women are being over-treated for small tumors in breast ducts that show up on the scans, but that would not actually threaten health if left untreated. (You can read more about that here.)

Fortunately, so far, I have never had to contend with a suspicious finding. I hope I never have to make a choice about such a result, but if I did, I would consult all the research to make a fully informed decision about risks of cancer versus risks of treatments. And I would want my physicians to be informed and direct with me about options.

So, let’s take women’s health seriously. Spare us the euphemisms and respect us as adults who can handle whatever life throws at us.

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. Please view Privacy Policy here.

Image: Arisa Chattasa

A Question of Identity

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According to a well-known poem, March is supposed to bring breezes, loud and shrill, to stir the dancing daffodil, but so far, this most unpredictable of months just brought us a foot of snow. All area schools were closed on Monday, including the Goethe Institut in Boston, where I have been taking German classes since the fall.

I was quite disappointed. I look forward to my Monday night class each week. Not only is our instructor great, but also my classmates are a fascinating group of adults, from many walks of life, with many different reasons to pursue this singular goal: learning to speak and read German.

My own desire was sparked by our European trip last summer to honor the memory of my great grandparents, who died in a concentration camp near Prague in 1943. Our visit to Terezín and the Stolpersteine ceremony commemorating them in Berlin impacted me deeply, in ways that I found very difficult to verbalize and am still sorting out, months later. Upon our return, I suddenly realized that I needed to learn their language, the language of my mother and her parents and all my German ancestors, to process what is still beyond words for me in English.

This has turned out to be a highlight of my week. I am no foreign language maven, and I am forcing some rusty synapses in my brain to start firing again. But I am loving the challenge. Doing my homework—Hausaufgaben—is fun, a meditation of sorts that completely clears my mind of all noise and worries. There is just the puzzle to solve: How do you say that? What does it mean? How do these words fit together? How does it differ from English? Why are the words arranged that way? And how is the way that Germans think and express themselves—the way my mother as a child and her family thought and loved and argued and dreamed—how is that defined by and encapsulated in their native tongue, in a way that was passed down to me without my even realizing it?

So much of who we are is framed and molded by the words we use to interpret the world. My mother and her parents were formal people in many ways. So when I learned that, in German, you use the formal version of ‘you’—Sie— for addressing someone older, officials, and anyone you don’t know well until you’ve met them a few times, it suddenly all made perfect sense to me. That careful adherence to rules of social etiquette conveyed to me directly and indirectly by my mother was the way she learned to understand the world from her first spoken words. Such is the power of language.

When she was dying, 20 years ago this April, my mother reverted to German. Over and over, she murmured, nein, nein, nein—no, no, no. I will never know what she was referring to. I wondered if she had traveled back to her childhood, when she had to leave her homeland to escape the Nazis. So many years later, I wondered, had a part of her remained forever trapped in a time capsule.

The search for identity is a lifelong quest. We can become mired in tragedy, loss, trauma, a chronic disease that profoundly alters our whole way of being, and let that become the focus of how we define ourselves. But I’d rather keep pushing, discovering, learning more about the world within and without. I don’t know where this new passion will lead me, but the journey fascinates.

So, until next week, auf Wiedersehen.

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. Please view Privacy Policy here.

Image: Berlin graffiti seen last summer near Alexanderplatz