Silent and Unsung

Let’s talk about the caregivers. Not all chronic and autoimmune conditions require a caregiver, but a lot do, especially at the beginning. No matter what the diagnosis, it is a big, traumatic adjustment, and it’s always better with someone to lean on during the days when you just don’t want to deal.

My entire family served as caregivers when I was little. I couldn’t walk because of the effects of b strep meningitis. They had to get me stuff, feed me because one of my arms didn’t work, and take me where all six-year-olds need to go – to school, outside, to the doctor. Even my 2-year-old-brother gave to the effort in that he was (unintentionally) marginalized when he should have been the center of attention.

When I was a teenager, I didn’t want help. I pushed everyone away until I couldn’t anymore. That didn’t mean my family wasn’t caregiving.

Sadly, I had the chance to give back a decade later when my mom was diagnosed with pancreatic cancer, which, thus far, is always a death sentence. I was lucky – I was between college and beginning a career, so I was able to focus on her completely. Both she and my dad told me to get a job, but if they’d really meant it, they would have pushed harder. For 11 months, I didn’t do much but spend time with her, take her to doctors’ appointments, and care for her as she deteriorated. It never occurred to me to bring in outside help, even as she got to the point where she struggled to bathe herself and use the restroom on her own.

I couldn’t let anyone else see her like that. I think we both felt that she had done for me, so it was ok, but anyone else would have dented her dignity too much. If she hadn’t been caretaker for my diseases, I’m not sure she would have let me. I think a lot of caretakers think they owe it to their loved ones to take care of them, and expense notwithstanding, would feel guilty if they didn’t do it themselves. I felt guilty for leaving the hospice for a couple of hours on my birthday.

Eleven months is not a long tenure for a caretaker. It didn’t tax my time since I didn’t have a job. But watching someone I loved so much dying was unbearably stressful and emotionally taxing. Don’t get me wrong. I don’t regret a minute of it, even the two weeks I spent on a cot in hospice with her (over my 24th birthday) and telling the truth when she asked if she was dying. (That is probably the hardest thing I have ever done, and I got yelled at for it, but how could I have done anything else?)

By the time we buried her, I could barely move. I called one of my closest friends and ran away to Texas. I didn’t need much attention from her. I just needed to be away. Two weeks passed quickly, and I wasn’t ready to go back, so I doubled my stay. Even after that, I was still tired enough to fall asleep at a Smashing Pumpkins concert.

When you care for a loved one, you don’t just go through the motions. You put everything you are into it, sometimes more than you can afford to. If I felt completely worn out after less than a year, I can’t imagine what happens to those who are long-term caregivers. Depression, anger, and guilt are all common. But there is support now. Caregivers shouldn’t feel bad about taking time for themselves, to regroup and recharge. If you do, keep in mind that everyone, including your loved one, will benefit when you feel better. You won’t be able to take care of anyone if you don’t take care of yourself.

Paving the Road

We all know where good intentions can lead. I thought about that while reading about Seattle’s new ban on plastic straws.

There is a growing global wave of bans on single use plastic products—straws, stirs, utensils – that aren’t often recycled. Policymakers want to fix the awful issue of plastic in the oceans, but there are people with physical disabilities who use plastic straws to drink because they can’t lift a cup or if they don’t use a straw, they run a significant risk of choking to death.

At least in Seattle, there is an exception for people with medical conditions who require straws, but it is not well publicized and suggested alternatives are not viable. The most likely situation is that restaurants and other watering holes just stop carrying them. Most of us with conditions have to carry supplies – medication, equipment, etc. – with us, but we all forget. I have run out of insulin often at work because I didn’t know I didn’t have enough to get me through the day, and keeping a medication on premises that expires in a month doesn’t work that well. For something as vital as getting a drink, this ban adds significantly to the burden we already have.

Difficult as the straw ban will be, it pales in comparison to the possible impact of new policies intended to address the opioid addiction crisis. I am not going to speculate about the intentions of the manufacturers who lied about how addictive opioids are or the doctors who took money to prescribe. Hopefully they will be held to account like cigarette manufacturers were when we discovered they had done something similar.

No, the problem we need to address is what states perceive as a solution. Many are instituting measures that would limit providers’ ability to prescribe. On the surface, it sounds like a logical solution. But the unintended consequences could be severe.

• Increased administrative burden: office and hospital administrative staff are already stretched thin because of the cost of doing business. This would stretch them even further.
• Stigma and restrictions: it’s all very well and good to be wary of a class of drugs that has caused so much misery, but there are plenty of patients who have a legitimate need for strong painkillers to treat severe pain. If the patients who need the medications can’t get them, they will be reduced to a state of existence, as opposed to living a life. And terminal patients, for whom palliative care is vital for maintaining dignity and comfort – addiction is not really an issue if you have weeks or months to live-- will wait in misery for death to come.
• An excuse for industry: insurers and pharmacy benefit managers (PBMs) hardly need another reason to delay or deny filling expensive prescriptions.

I have not heard a good solution to this one. Usually, I adhere to the theory behind our legal system (admittedly overly idealistic) called Blackstone’s Formulation, that it is better to let 10 guilty people go free than to imprison one innocent person. Translated for this situation, that would mean anything other than a solution that would punish the chronic pain sufferers for their conditions. I can’t make that work here since those addicted to opioids would be cast as the “guilty” ones. But they are victims, too, victims of a system that abdicated its purpose and its duty to put profits over patients.

So, what can we do? The only thing that comes to mind is increased patient engagement. We are headed in that direction, but slowly, too slowly to mitigate the negative effects of this latest slate of legislation.

I don’t think we as patients can wait for them to find us. At a few of the conferences I’ve attended, I’ve heard industry representatives speak about how difficult it is to find patients who want to be involved in research. This seems like an odd disconnect to me, as I am very aware of how vocal the online communities are. I bet nearly all of us, if given the opportunity to improve some part of the process/drug/system, would jump at the chance.

So, in the spirit of prevention and planning ahead, pick the entity (insurer, legislator, pharmaceutical company, etc.) you think is the biggest problem, and look up their public affairs office. Write or call or email or tweet with a message that if they ever decide to address X problem, you, as a user, would be happy to assist. Let’s see what happens!

Drink Up

Ah, water. The most constructive and destructive force in nature. Too much and it will destroy your life (hurricanes, sinkholes, floods). Too little and it will, well, destroy your life (drought, wild fires). It’s all about balance. The human body just can’t live without it.

Dehydration is a danger to everyone in the summer, but especially for those with chronic conditions. It can cause, worsen, or be a symptom of heart disease, hypoalbuminemia (too much albumin in the blood), hyper-/hypothyroidism, cancers requiring a certain course of chemo (cisplatin), and my own lovely monsters, diabetes and kidney disease. If I’m outside too long, I’m dehydrated. If I travel on a plane, I’m dehydrated. If I get sick to my stomach, I’m dehydrated. If my blood sugar is high, I am dehydrated. Around 66% of adult bodies are water, and if we don’t replenish what we use, it can make our conditions worse.

Every year, there is a host of articles warning about the dangers of dehydration, especially in the summer. But what happens if you actually get dehydrated?

Dehydration is a sneaky little devil. Even a little imbalance can cause you to feel spacey and clumsy. Inside your body, your blood thickens, which makes it slow and sluggish, so your heart rate rises. Your body starts conserving water for the most necessary tasks like blood flow and cell function. By the time you feel thirsty, you are already dehydrated.

And it’s not just a matter of being thirsty. Cottonmouth, unexplained exhaustion, and not needing to pee for an unusually long time are all pretty well-known symptoms. But in my experience, dehydration can also cause headaches/migraines, muscle cramps, and a weird, extended numbness in your extremities, like your hand fell asleep and won’t wake up when you shake it. That time I didn’t hydrate properly for exercise, I had the worst cramps I have ever felt. I felt it coming, and just wanted to finish the last few minutes. By the time I got off the treadmill and grabbed water, I couldn’t even sit up straight. I felt nauseated as I slowly sipped water. It didn’t let up completely until over 20 minutes had passed, and that was in an indoor, controlled environment. I have never made that mistake again.

How do you treat it?

Sometimes it’s not as simple as drinking a glass of water.

Water is great, but it may not be the best or fastest treatment, at least by itself. There is a reason “smart” drinks and sports drinks are popular with athletes. They have electrolytes. Electrolytes are a collection of salts -- calcium, magnesium, potassium, and plain old table salt – that help regulate water flow in and out of your cells. A banana can help (but not too much – too much potassium can mess with your heart) and if you don’t have one of those enhanced options close when you need it, you can add salt and/or lemon juice to tap water. There is also Pedialyte, which comes in popsicles!

While you are treating dehydration, you also might want to avoid caffeine, alcohol, sugary drinks (and foods), and anything overly salty, like soy sauce, as they will just work against you.

In the most extreme cases – you can’t tear yourself away from the bathroom due to one end or the other – it’s time to visit the emergency room or urgent care center. They can hook you up, literally. A few hours on IV saline (diabetics out there, make sure it’s the kind without glucose), can work miracles.

Even when you start feeling better with treatment, don’t be fooled. When I asked my doctor about it last time I had this issue, he said that it takes a day or two to recover completely. Don’t be surprised if you are completely wiped out for one or two days.

Of course, the best treatment is no treatment at all. It’s prevention, like all those articles tell you. Keep a bottle of water with you if you’re going to be outside (especially in the summer heat) or away from somewhere you can easily get a drink. Throw a few bottles in your car or your bag. Your body will thank you for it.

Helpless

Most of the time, I do ok. Even as I struggle to be where I want to be medically, I still know why my blood tests come out not where I want them: it’s something I ate or exercise I didn’t do. There are times when I don’t know. A few times here and there are ok. Well, not ok, but I can deal with them. However, if it goes past a couple of days in a row I start to feel helpless. Not knowing what’s causing it, and not being able to get my blood sugars down feels like I am not in control of my body. It’s not pleasant.

It’s a feeling I have had more and more lately. But not because of my condition. Because of our political situation. I knew this administration was going to be rough, but I expected Congress and the courts would do their jobs and check executive power. They are failing miserably. That means that a lot of rights and protections are being eroded, if not outright disappearing, including protections for chronic patients. (And I suspect that living in Washington amplifies that feeling.)

I think many of us feel like there is nothing we can do. I spoke with a friend this week who wanted to talk about the latest developments. He was so frustrated after just a few minutes that he couldn’t. We had to take breaks and circle back. I could sympathize.

What he was feeling about politics mirrored what I felt with my disease. I know from experience that sometimes you need to take a deep breath and step back for a while. It must have been worse for him though—he is of the generation that worked so hard to secure our rights in the first place. I can’t imagine how it feels to have come through the social movements of the 60s and 70s, only to feel like that work is being erased in a fraction of the time it took to accomplish it.

As with a chronic condition, the important part is re-establishing that slipping control. You don’t have to start with jumping back into control of everything. Start small. For my condition, that could mean walking up the last flight of stairs instead of taking the elevator all the way or testing my blood sugars a little more often.

For my friend, I suggested that volunteering for a charity or grassroots organization might help (I have two – the Chronic Disease Coalition and the Right Care Alliance.). If you are like my friend, even an hour a week is enough to feel like you’re getting your foot in the door, like you are taking control of your little corner of your little world to help make it a little less bad. And believe me, whatever organization you choose will be happy for the help.

Don’t let circumstances, political or medical, run away with you. Take back your corner of the world through action and suffocate the helplessness instead of letting it suffocate you. If you help yourself by helping someone else, you will never be sorry.

P.S. There is one more thing you can do, of course. (If you read this column, you know what I am going to say.) Vote. We are almost through primary season, although there are still a few. Midterm elections don’t usually draw much attention, but this is different. If you don’t like how politics are making you feel, vote for someone you think will make it better. That person doesn’t have to be a perfect match to your priorities – what politician is? – but I’ll bet you can find someone who gets close. Look at their voting records (or read their platforms if they’ve never held office), listen to them speak, get a feel for how connected they are to your community, and therefore to you. Choose the one who will stand for you. There is even someone who will give you a free ride to the polls.  And to think they told you there was no such thing (as a free ride).

What About the Kids?

I don’t have kids, but that doesn’t mean I don’t absolutely love the ones in my life. The first one I really “met” was born a few months after my mom died. Coming off about a year as a caregiver for a terminal patient, I was unemployed. My friends’ house was a haven away from my tiny apartment that always felt like the walls were closing in. I spent a lot of time there then. There’s nothing better for grieving a loved one than baby therapy, and this one was super cuddly, although he wouldn’t like to hear that as a rising high school senior. A few years later, he got a sister, and a couple of years after that, my brother had his first of four. For the record, that would be six kids between the ages of 2 and 17 that are really important to my life.

While my disease is mostly invisible, there is the matter of the Class III medical device that is attached to my body 24/7. It’s usually concealed by clothing, clipped to my waistband, and covered by whatever shirt I am wearing, but if you eat with someone often enough, there is no point to subtlety. They are going to see the plastic tubing and see you press the buttons, which make noise.

When they are little, kids will just take your word that it’s just called a pump. As they reach the stage that demands “why?” every two seconds, they want to know what it’s for and then how it works. Hopefully they have seen you use it enough that they are comfortable with it by then. But what do I know about age-appropriate explanations? My parents always answered our questions, and I am not sure there was much moderation. I want to tell them the truth, but I don’t want to freak them out and make them worry.

The first time it happened, it caught me totally off guard. I was speechless as my mind raced as I tried to find the right words – a rare occurrence at best. Finally, I looked at the toys scattered on the floor around me and I told the toddler next to me that, similar to how toys sometimes break, my body was broken, and the insulin pump I wore helped it work properly.

As they grew older they asked more about the details, which allowed me to elaborate about the chemical that helped me make food into energy. Around that time, the first two kids’ next door neighbor was diagnosed with Type 1 diabetes, and I hope (and suspect) that their early exposure to my condition gave them an understanding that took away the stigma I felt growing up.

That’s the age where they will accept your condition on the same level as your eye color. We patients talk about lessening the stigma of chronic conditions and mental illness, which is so important to the treatment of us as people.  It’s hard to let go of the impressions we formed when the adults who raised us could only discuss the plight of a friend or family member in whispers, and a stigma is born, rather like the Harry Potter novels referring to villain Voldemort as he who shall not be named. It is only by acknowledgement of reality, no matter how bad, that we can remove the stigma and begin our plan of attack.

Diagnoses of many chronic illnesses are increasing, and telling ourselves that kids don’t see it just because we want to protect them to won’t make it so. Fibromyalgia was not on the radar at all when I was a kid, and the forecast is that one in three kids born today will be diagnosed with diabetes. They are going to at least know someone with a chronic condition, and talking about it before then will help them see that friend or colleague or themselves as someone not to shy away from. They could be the first ones to see us for who we are and not what we have.

The Justification of Sick Days

I made a mistake today. I have a cold, and in an effort not to seem anything but “normal”, I went back to work as soon as my fever ebbed. I’d had it for several days already, so I wasn’t contagious anymore. And normal people never take much time off for a head cold, do they?

Problem is, my condition complicates things. A cold that lays a healthy person low for three days can take me out for three weeks. If my head still feels like it’s about to roll off my neck, my throat still hurts, and my blood sugars are still out of whack, it’s not the time to push myself back to work.

Feeling this way is not just for (contagious) sick days. A few weeks ago, I found myself dealing with what turned out to be an expired vial of insulin. It happens, but sometimes it takes a while to figure out since it’s so rare. While I struggled with high blood sugars that just would not come down, I wanted to go home from work early, but I didn’t because it felt like failure.

Why do I feel this way?

This is the first time I have taken unexpected sick leave in the eight months I’ve been on this project, and as far as I know, neither client nor boss has a problem with me teleworking. When I try to unravel it, it sounds like the patient’s version of something called “imposter syndrome.” It’s that feeling you get when you doubt your abilities and start to feel like a fraud for even trying to do whatever you are attempting. For anything else, my “fake it ‘til you make it” instincts would kick in. Instead, I start to compare myself to everyone else in the office, and while plenty telework more than I do, my internal monologue starts to whisper that their reasons are more legitimate than mine, and that I don’t deserve more time at home unless it’s totally unavoidable, like a doctor’s appointment. Apparently, my unforgiving internal monologue does not think that diabetes factors that exacerbate illness are legitimate.

The best and the worst thing about having an invisible condition is that you can play at being “normal”, or at least healthy. Every time I hear “But you don’t look sick” reinforces the idea that I can “pass” for healthy. It’s a great feeling when someone sees me as nothing more or less than how I wish to be seen. It also makes it harder and harder to make appropriate accommodations for myself when I need to, which can be dangerous.

One would think I would know all of this by now, and one would be right. I know it in my head. It’s my emotions that can’t keep up. Sometimes I go so long feeling how what I imagine a healthy person feels, I will deceive myself into thinking my body is just like everybody else’s so I can hold onto that. And if I can’t let go of my own illusion and I am just like everybody else, then I don’t deserve the accommodations other chronic patients get. When I start to doubt what I need to take care of myself is justified, I become very harsh and self-critical. That’s not productive.

It might be better to consider what I would say to someone else in my situation. Of course they should take the time they need. And if they should, so should I.   

Nothing to See Here

I’ve been planning a legislative update for a while. Little did I know just how bad June 2018 would be.

Before yesterday, I might have spent the whole post talking about the Trump administration’s new policy that allows insurance companies to offer plans that do not cover the 10 essential health benefits guaranteed by the Affordable Care Act. Of course, the ultimate target of the policy is to completely eliminate mandatory protections for those with pre-existing conditions, even though protecting that particular essential health benefit is “very important” to over 70% of Americans. Or perhaps the proposed cuts to the medical safety net – Medicare and Medicaid -- that would affect our most vulnerable, justified by a tax cut that was bad, but not that bad until you realize that they needed it to create a reason to gut Medicare and Medicaid.

I would have encouraged you to vote if you felt threatened by these policies. I would have given you a link to make sure you were registered (and to register if you weren’t), tell you where to go on election day, and how to vote early, as well as one to help you evaluate the candidates by their voting records.

And I would have steered clear of anything political beyond healthcare policy.

In good conscience, I can’t do that anymore. I will always encourage you to vote, but the Supreme Court has handed down three decisions in the last three weeks that will make that more difficult.

• Decision #1: Gerrymandering is a way to draw (or re-draw) Congressional districts in a way that discriminates against members of a specific race/ethnicity or political party. Racial gerrymandering has been illegal for a long time. Until recently, political gerrymandering was not egregious enough to require laws to prevent it. Now it is. A couple of weeks ago, The justices decided that they weren’t going to rule on whether partisan gerrymandering is unconstitutional. It’s hard, but not impossible, to measure, and it’s gotten to the point where it is demonstrably creating an unlevel playing field. This would have been the time to act. Solution: Get your state legislature to put gerrymandering on the ballot. Several states are proposing plans for the courts or bipartisan commissions to redraw the districts. Twenty-four states allow citizens to propose policy to the legislature or directly to their fellow voters.
• Decision #2: They upheld a decision to continue letting Ohio to purge voter rolls after missing one vote. Currently, if you miss a presidential or mid-term vote, the state will send you a notice informing you that you are about to be purged from the voter rolls. On paper. Through the mail. If you do not respond, you will be taken off the voter rolls after another four years. Do you know who actually checks the mail and reads random communiques from the state? No one under the age of 60. The Voter Registration Act says purging voter rolls for not voting is illegal. However, the majority (strictly along party lines) ruled that because the purge wasn’t aimed at a single individual, it didn’t violate the law. Do not let yourself believe that this behavior will be confined to Ohio. Solution: Nothing for the moment.
• Decision #3: They reversed a lower court decision that Texas districts were racially gerrymandered against Latinos. This decision was also made along party lines, and comes five years after they gutted the Voting Rights Act. Solution: Nothing for the moment.

All of these things put together with states closing polling places in minority neighborhoods, voter ID laws, and limiting polling hours and early voting options conspire to make voting by certain groups impossible. And who are these groups? Minorities, low-income earners, the elderly, and the disabled. All we ever wanted was a level playing field, and each of these things is another obstacle to overcome for the people who have the most to lose.

I am an optimist. I do not like being the doomsayer, but today it feels like there is no other choice. Today, Supreme Court Justice Anthony Kennedy, the only swing vote on the Court, announced that he will retire at the end of July. I can tell you right now that the Trump administration will nominate another Neal Gorsuch, who believes that racial gerrymandering is not illegal and has indicated through his judicial record that he does not believe in legal protections for the disabled. The Supreme Court protected the ACA only because the individual mandate was a tax. Now that the individual mandate is gone, so is the reason the Supreme Court protected it. What do you think will happen when the Trump administration brings another case saying that the Affordable Care Act is unconstitutional now that the individual mandate is gone. Nothing good, I assure you.

Supreme Court appointments are for life. Whoever comes in after Kennedy will be there for decades. The only way to stop it is to flip the Senate from red to blue – another very difficult but not impossible task. This means we have to protect Democratic Senators in Florida, Indiana, Missouri, North Dakota, and West Virginia, and flip two in Nevada, Arizona, or Tennessee.

I can tell you right now: this is the most important vote you will ever cast. If you have to miss an hour or two of wages you can hardly afford, or bring your kids to the polling place with you, or beg a ride to get to your polling place, PLEASE VOTE, especially if you live in one of the states I mentioned above. If you ever felt powerless in politics, now is your time. We have the power to protect ourselves, if only there are enough of us. I do not want to see our rights, so dearly won, steadily walked back for the next 30 years, and neither do you.

P.S. I do not consider the current administration to be conservatives. They are not the respected adversaries I have always known.

Legacy

I mention my mom a lot when talking about my chronic conditions, but my dad is just as much of an influence in my life. We were not always as close as we are now, but it was the first relationship I actively worked on as I transitioned from child to adult, and that is no small thing. I’m not sure I would have been able to do that successfully with my mom had she lived long enough for me to try.

We are a very politically aware family. My parents always took me and my brother with them when they voted. Current events were regular topics of discussion, and I am still unaware if there was any attempt to censor discussion for age-appropriateness. One of my clearest childhood memories is my maternal grandfather telling me to pay attention to the Iran Contra hearings in the summer of 1987. He said history was being made. I was 10. I didn’t want to watch PBS. I wanted to watch cartoons, but I sat down and paid enough attention to know it was boring.

We weren’t really what you would call activists, though, or so I thought. I knew my grandfather wrote a lot of letters to Barbara Mikulski, but that was pretty much it.

Then my parents and several others, led by my dad, sued our city and then the state over the elementary schools in my hometown, and I began to learn about civil rights. (I was a plaintiff!) The still fairly segregated elementary schools in African American neighborhoods weren’t getting the same money as the elementary schools in white neighborhoods. It took a long time, but they (we!) won, and each feeder area got an elementary magnet school, each with its own specialty (we were arts, and now there’s math and science, Spanish immersion, communications, and NASA Explorer).

You can’t really be involved in something like that without starting to ask questions. In conversations we still have, I learned that my paternal grandmother was active in the integration of all-white Baltimore neighborhoods in the 1950s, long before Congress enacted the Civil Rights Act.  

A decade later, on April 4-5, 1968, while my dad was a law student at George Washington University, he ferried residents home from jail while southeast Washington burned in response to the assassination of Martin Luther King, Jr. He had to have a special placard in the window of his car so he could get past checkpoints set up by police and military troops. It must have been scary, but the people he drove had every right to their fury (not the burning and looting part), and he wanted to help.

This is the environment I come from. This is the way my family did things. It is only natural that I continue the tradition in my own way, with my own civil rights issue -- that good health is a right and not a privilege.

So, remember to make sure you are registered, and then vote! In your primaries AND the general election in November. This is how we will change the world no matter what issue you’re most passionate about.

P.S. This is a surprise for my dad, so don’t tell him. 

In the Eye of the Beholder

I came to my art appreciation awakening when I was 13. In the days after my Bat Mitzvah, we had relatives in from another continent, so we all piled into the car for the four-hour trip to Chicago to see Monet in the 90s: The Series Paintings at the Chicago Art Institute. I threw a tantrum. It was my Bat Mitzvah, it should be all about me, and I didn’t want to go to some overcrowded art exhibit.

Once I went in, I was, of course, blown away by the canvasses, one of which was wall-sized. It was also fun to compare what I saw with and without my glasses (this only really works for the Impressionists). Eventually, I came to appreciate more than just impressionism – the pre-Rafaelites, glass blowing, sculpture, photography. Now the walls of my apartment are covered with art, and I even have a miniature of a Rodin sculpture.

In a recent conversation, I realized I may be privileged to have access to a more unusual form of art. My friend was talking about how, after her recent shoulder surgery, she had several x-rays that she would likely never use again. The conversation devolved into a rather silly set of proposals of what to do with them and other leftover medical records. I joked that she should make a collage and hang it on her wall.

We forget sometimes in all of our fear and frustration with bodies that don’t work properly, that the human body really is a work of precision art. Not the outside, the inside, the things we can’t groom or enhance with cosmetics.

Once I had to go in for an ultrasound. (I have cystic breast tissue, which is very common and benign, but they do like to check periodically to make sure everything is ok.)  There was a mix-up and they had to do it a second time. While I waited and chatted with the tech, he offered to show me the heartbeat in my leg (femoral artery) and all of the blood vessels. I’d never thought about a heartbeat in my leg before. It was fun to see, but not really something I could hang up with my posters and paintings.

But there was also the lightning storm. Once, after I had my second set of surgeries for retinopathy, my doctor wanted to check that everything was stable, so he injected me with a dye that lit up the blood vessels in my eyes. While the blood vessels in my legs were cool, these were stunningly beautiful. They looked like a lightning storm against a sepia sky. I could see the smudges of laser scars, which were in high contrast against the sharpness of the blood vessels. It wasn’t what I expected of one of my biggest problem children (my retinas).

I liked it so much, my doctor printed off a copy for me, which I still have a decade later. For a while that page lived on my office wall at work. I couldn’t tell them what it really was; that might have been a little too much for sensitive stomachs (not as bad as that time my middle school history teacher made all of us watch a video of his ACL surgery. Eeew.).

For all the years I’ve been poked and prodded – or I’ve poked and prodded myself – for the sake of good health, I don’t get to see inside very often. Probably a good thing.

So, if you ever have the opportunity, I recommend taking it. As with more common forms of art, a view under the skin may not be to everyone’s taste, but you also may find it as fascinating as I do. It’s all in the eye of the beholder.

It’s All In My Head. Which is Probably Good.

I love movie scores. If you have never just sat and listened to the music behind Gladiator or Last of the Mohicans – whether you like the movie or not – you’re missing out. And we all recognize specific themes from cultural icons like Darth Vader’s in Star Wars. Most of your favorite movie characters have their own music, whether you realize it or not.

These carefully crafted pieces are meant to shepherd us through the movie, so that we experience it the way the director wants us to. Each note is meant to evoke and heighten what we feel – joy, anxiety, certain doom -- often communicating the feeling of the moment better than words.

Sometimes I think my life should have its own score. Each of us has a soundtrack of songs that we love, and that can change every day. But I am talking about pure instrumental, at least for one specific situation that happens three times a year. I am talking about getting my lab results, of course.

I thought I had left report cards behind with school, but every time I see certain providers, my labs (I’m looking at you A1c (diabetes) and eGFR (kidney disease.)) tell a story of how well I have managed my conditions over the last three months. Sort of. I have figured out over the years that the tests are weighted in favor of the last 2-4 weeks, which means I can goof off a bit and still do well if I shape up for finals.

I usually have a good idea of what I am going to hear, but no matter how good my blood sugars have been, I always feel nervous until I hear the numbers. Of course, I don’t have my own personal score, but there are a few pieces I hear in my head every time I go.

In the buildup getting my results, I feel a bit like Flight of the Bumblebee – manic with a hint of both fear and curiosity, with a significant chance of splatting myself on a brick wall (I am a bumblebee, after all). I know how closely I have been following “the rules” and I never know if I am going to “get caught.” As a practiced boundary pusher, you would think I could find some other boundary to push since the consequences of diabetes can be serious (heart disease, stroke, etc.). But the consequences are never immediate and avoiding the consequences for a few more months can be a heady experience.

If it’s good, or at least stable news, I am flooded with relief, and I feel like Beethoven’s 9th Symphony, better known as Ode to Joy. I can continue what I was doing, no changes necessary.

If it’s bad news, I feel like The Imperial March (Darth Vader’s theme), like a failure and certain doom is coming unless I do something to stop it. Then I need all the right radio songs to lighten the mood.

Last week was different. I had been shadowing Darth Vader for several months, and I expected more. But I finally got to hear some Beethoven instead when I discovered that I had regained over half the kidney function I had lost over the last couple of years. Do you have any idea the kind of cognitive dissonance combining those two pieces causes? It was a little disorienting. Hopefully, moving forward, I can ditch Vader completely. It would be really nice not to have that dramatically dark tune bouncing around in my head the next time I get medical results.