Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Mind

Standard Time

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So, we set the clocks back this weekend, and the days feel much shorter—even though the amount of daylight is actually only a few minutes less than it was before. It’s all relative. How you perceive length of days depends on  how the rising sun and impending darkness encircle your waking, working, active hours.

Even as I know this, the shift to an earlier sunset always feels claustrophobic. My body has to adjust. The older I get, the less I’m convinced that switching the clocks is really necessary. It’s an artificial imposition on nature’s true rhythms.

But this is just howling at the moon. I try to remind myself that our reversion to standard time also means that in a few weeks we will arrive at the winter solstice, and the days will grow longer, once again.

The earth spins, the pendulum swings, the tides ebb and flow. Election Day has finally arrived, and tomorrow, whatever the outcome, the sun will still rise and set. I try to remind myself that the longest nights eventually give way to more daylight. I try to remind myself that change is the only constant.

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: United States seen from orbit photo by NASA

What I Want

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I want to write something positive, but I’m having a hard time. The events of the past week and weekend are weighing heavily on my mind, and to pretend otherwise would be disingenuous.

Back in the ’70s, when I was in graduate school at Carnegie-Mellon in Pittsburgh, I lived in Squirrel Hill. I was not involved in Jewish life at that time, but I remember the community fondly, as an intimate, comfortable urban neighborhood where I felt safe walking any time of day or night. I received my master’s degree in public management and policy analysis from what is now the Heinz College at CMU, at a graduation ceremony in a synagogue near the university—not the site of Saturday’s massacre, but a few blocks from there.

It is heartbreaking to comprehend what happened at the Tree of Life Congregation Synagogue on Shabbat. Just as it’s terrifying to comprehend that a dozen-plus pipe bombs were sent to critics of the president last week. Thank goodness the bombs never exploded and that the alleged bomber was quickly apprehended. So much violence that the fatal Kentucky shooting last Wednesday of two people of color by a white man who had been unable to enter, and presumably attack, a nearby, predominantly black church was barely noted by the national media

I could tie these events and so much other bad news (climate change, anyone?) thematically to the issue of stress and how it affects health, so that I could relate it more directly to the focus of this blog. But what’s happening to us in America today is about much more than that. So much that I have taken for granted about our democracy feels like it is unravelling. It seems as if we have reached some monstrous tipping point, and that more blood will be shed before we get through these dark times.

I try to remind myself that I grew up in the ’60s, when there were riots in the streets, we practiced duck-and-cover in grade school against the threat of nuclear attack, the Vietnam War was raging, and political leaders were assassinated. Our nation survived all that. Somehow, we have to get through this, too.

I want to live in a country that champions empathy over narcissism, that respects the rights of individuals without shredding civility, that prizes heart over hate. I want fair and free elections. I want the voices of calm and reason and hope to prevail over the voices of anger and fear and divisiveness.

I have to believe we are all better than this. As of this writing, a group of Muslim Americans has raised more than $130,000 to help Jewish victims of the Pittsburgh synagogue massacre. This is the true spirit of America. This is the America we need to cherish and support and strengthen.

Election Day is one week from today. Please. Vote. The health and future of our democracy depends on us all.

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 Credit: Zoran Kokanovic

Wild Goose Chase

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Canada geese can be a nuisance, crowding public green spaces, spackling parks with poop. But they can also be magnificent. I always love watching them fly, honking signals to form their undulating V. Strangely, I haven’t heard them yet this fall, migrating south, but I expect to, soon, as the days grow noticeably colder.

Those geese may be wild, but they are certainly organized. I cannot say the same for our local CVS pharmacies last week, as I tried to chase down a refill on a prescription to keep me warm.

Now, this medication is a vasodilator that I need to control my Raynaud’s. It’s a key part of my regimen year-round, but all the more important as temperatures drop. When I realized I had only three pills left early last week, I ordered my final refill on this particular prescription via my CVS iPhone app Sunday night. Normally, I get a confirmation text that the refill is in process (which I did), and then another text when it’s ready for pick-up within 24 hours (which I didn’t).

Hmmm. Time to follow up with a phone call. The pharmacy staff who answered the phone on Tuesday told me it was on order and would arrive later that afternoon. Fine. On Wednesday (one pill left), I received a text that a refill was ready for pick-up. So I went to the store, expecting to get my scrip and be on my way.

However, as it turned out, the refill was for a different med, one that I actually did not want refilled (it was on autopilot and I didn’t catch it in time). The medicine I needed was still on order. I inquired why. So it turns out that my local CVS did not have any of the required pills in stock, and none were available from the manufacturer (what?), and only one other CVS in the city had any. The clerk transferred the prescription to that store, so I wouldn’t lose any more time (theoretically), and I went home.

By Wednesday afternoon, still no text that the scrip had been filled. Hmmmm, again. I looked up the address of the store in question and discovered that there were two different stores on the street she had mentioned. So I called both. Had they by any chance receive my prescription? Nope. Even if they had (they could see it in the system) there was a problem. Why? Because my scrip was written for the generic version of the drug, not the brand name. And no CVS in the entire city had the generic pills in stock. I was directed to yet another CVS, on a different city street, that had the brand name showing up in the computer.

By this time, I was getting pretty annoyed. Already it had taken me more time than I had available to track this down. And it’s not an unusual drug. There was not one, not two, but three CVS stores on the newly designated street, according to my Internet search. I picked one and called. This time, I got lucky (or so I thought). The pharmacy clerk told me that they had my medication, but the problem was that my prescription had to be rewritten only for the brand name, and not the generic as an option.

Are you still with me? Aargh! I called my local rheumatologist’s office and got hold of one of the nurses who knows me. She readily took care of the new prescription and assured me she would put it under my doc’s nose as soon as he finished with a patient. Twenty minutes later, the pharmacy called back. They had the prescription, but it was still written incorrectly. There could be no mention of the generic on the scrip, only the brand name. Good grief. I called back my doc’s office, got another nurse on the line, who promised to straighten it out and get back to me when all was set, which she did by that evening.

The next day, Thursday, still no text that the scrip had been filled. I was out of pills by now. So I called the pharmacy to see what had happened. A different pharmacy clerk named Cindy answered the phone. I explained my dilemma, trying unsuccessfully not to get agitated. She calmed me down and found all the information. Apparently, they did not have the drug in-house, but she promised to order it right away from the warehouse, and expected delivery the next day. “Call me by noon to check in,” she said in a motherly voice. Thank you, Cindy, for being human.

I didn’t make the call because I got another text on Friday morning, telling me that the scrip was filled. After a client meeting downtown, I double-checked my app. Once again, it was the drug I didn’t want, still waiting for me at the original CVS (even though I had told them I didn’t need it). I called the new store to check on my quest. A different clerk answered and found out the pills were there, but my scrip was not yet filled, so she would ask the pharmacist to move it to the front of his orders.

I drove across town and found the store, a small, old CVS with a tiny parking lot, then waited at the pharmacy counter for another person to finish buying what looked like a dozen bags of pills. But when it was finally my turn, hallelujah, the scrip was filled. Not only that, but the young woman (not Cindy) who served me, who turned out to be the Wednesday clerk on the phone who had said the pills were in stock two days earlier, recognized my name and apologized for her mistake, due to an inventory error (not her fault) in their records. She was so pleasant, so committed to making my experience a positive one, that I might just leave that prescription at this out-of-the-way CVS pharmacy, despite the inconvenient location.

Wild goose chase, indeed. Any flock of Canada geese that had set out for their southern nesting grounds the day I first put in my order were probably long settled somewhere nice and warm by the time I got my pills. Thanks to some thoughtful individuals who believe in old fashioned customer service, I’m a bit warmer, now, 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 Credit: Jessica D. Vega

Refreshment Break

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I made myself take a walk Monday afternoon. It was short, just around the block, but I got outside. It feels like fall, now, damp, chilly, and I need to get acclimated to the change in seasons. I’m back in sweaters and warm pants and thick socks, my long coat, hat. I wore mittens over the weekend.

It’s all too easy to make excuses to myself to stay inside when the weather turns. It’s too overcast. It might rain. It looks dreary. I don’t want my fingers and face to get numb.

So my short walk was a good reality check, as well as a much needed breath of fresh air. Even as it was overcast and had been pouring earlier in the day, the rain held off. The air smelled sweet with the tang of humus. My joints limbered up. My mind brightened from a jolt of oxygenated blood.

It was also good to see the neighborhood beyond my computer screen. Trees are turning late this season in Massachusetts, due to a warmer-than-normal summer and early fall. Usually we’re at peak foliage right around Columbus Day weekend, but this year green still predominates. Only the sugar maples, so far, have begun to flame and shed their leaves.

Pumpkins, plastic tombstones, skeletons and fake cobwebs decorate a few neighbor’s lawns, but the Halloween craze of a few years back seems to have ebbed. That’s fine with me. More than ghosts and goblins, there are quite a few red, white and blue signs promoting political candidates for the upcoming November election. That’s fine with me, too.

A new neighbor’s house has been repainted; that neighbor’s repairs are complete; another’s is in progress, with boards hammered over the front door. Al decorated our front steps with mums, pumpkins, gourds and cornstalks over the weekend, and I’m pleased with the result as I walk up our drive.

Back inside, I realize my fingers and lips have gone slightly numb. But it’s warm in the house, and I feel refreshed. Worth repeating.

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.

What Matters

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This morning, as I was changing the bandages on my fingers, I realized that I had forgotten to write my blog. I kept thinking yesterday was Sunday, because of the Monday holiday. So this post is arriving a bit late on Tuesday.

It’s easy to lose track of time when you’re busy and immersed in multiple projects, work, social activities, family. So consider this a public service announcement. Four weeks from today are the mid-term elections. There is a great deal at stake in our country. Health care insurance reform is at the top of the list.

In particular, there is litigation currently under review in the federal district court of the Northern District of Texas, Texas v United States, brought by 20 Republican attorneys general and two private citizens, that seeks to declare the Affordable Care Act unconstitutional. According to this excellent summary on the Health Affairs website, the plaintiffs are arguing to “enjoin HHS and the Internal Revenue Service (IRS) from enforcing the ACA and its implementing regulations—or, at a minimum, to strike down the law’s guaranteed issue and community rating provisions alongside the mandate.”

The Department of Justice has declined to defend the constitutionality of the ACA’s provisions in the Texas case, including the ban on discriminating against people with pre-existing conditions. In response to the possibility of the judge ruling in favor of the plaintiffs, a bill and a resolution are pending in the U.S. Senate that would counter some of the fallout.

The bill, sponsored by 10 Republican senators, would amend HIPAA to restore two of four provisions that might be struck down by the Texas ruling (which has not yet been issued). Here is how Health Affairs explains it:

The legislation introduced by Republican Senators would restore only two of the four provisions that stand to be invalidated in Texas: 42 U.S.C. § 300gg-1 (guaranteed issue) and most of § 300gg-4 (guaranteed issue and rating based on health status). So the bill would prohibit the denial of coverage and rating based on health status, but it would not prohibit preexisting condition exclusions or rating based on other factors, such as age, gender, tobacco use, or occupation. This means that many individuals, including those with preexisting conditions, could still face higher premiums, higher out-of-pocket costs, and the denial of benefits because of a preexisting condition even after paying premiums for many months.

The Democrat’s resolution, in turn, would do the following (again, quoting from Health Affairs):

In July, Democratic Senators led by Joe Manchin (WV) introduced a resolution with the goal of intervening in Texas to defend the ACA’s protections for people with preexisting conditions. The resolution would authorize the Senate Legal Counsel to move to intervene in the case on behalf of the Senate and defend the ACA. During last week’s debate over an HHS appropriations bill, Senate leadership blocked a vote on the amendment.

For those of us with pre-existing conditions and expensive medical care, this case is important. Continuing efforts to remove protections for people with serious illnesses are literally a matter of life and death. Participation in our democracy can never be taken for granted.

Whatever side of the issue you’re on, this is essential: mid-term elections matter as much as presidential elections. Who represents you in Congress is as important as who serves as President. Whom you elect as your state’s Attorney General matters as much as who serves in your state and local government. Note the word “serves.” If you are already registered to vote, please participate on November 6. And if you have not yet registered, depending on where you live, there may still be time. You’ll find all the details here, at USA.gov’s voter registration page.

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 Credit: Anthony Garand