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.

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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?

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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.

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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.   

Legacy

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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.

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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.

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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.

A Better Way to Escape

Last week, I watched a PBS special about the 100 books America loves most (you can vote all summer for your favorites!). As I sat there, I tried to remember exactly how long it had been since I read a book. Too long, apparently. I couldn’t recall.

This was alarming to me. Books – actual paper books you hold – are such a fundamental part of my identity that I have put off cataract surgery for over a dozen years because I am afraid to lose the ability to literally bury my nose in a book. As a kid, I would lock myself in the bathroom for hours because no one would interrupt my reading in there. (In hindsight, I realize my parents knew exactly what I was doing and were kind enough to indulge me. Mostly.) I still wear my socks with the flying books on them.

So, I panicked, did a little research, and bought a new book. Then I spent an entire day over Memorial Day weekend – about 13 hours-- reading it. I rediscovered a few things between the pages:

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Sleep

My reading day took place on a sofa under a huge window, so in natural light. The TV was off all day except during meals. No radio, either. The phone was in another room. I read and read and read until my eyes wanted to fall out. It was good to know I could still focus like that.

I went to sleep at a reasonable hour, too. 10 or 11, I think. And I slept right through.

That hasn’t happened for months. Even the days I do get to sleep on time, I usually wake up a couple of times before my alarm goes off. Sometimes it takes a while to get back to sleep. Sometimes I wake up with just enough time before the alarm that I know it’s useless to try to fall asleep again. Whatever the circumstances, I am exhausted when I get to work.

Not this time.

Eating

I am an emotional eater. Events of the last couple of years have proven this over and over again, to my detriment. Like so many of us, I eat for comfort. Diabetes is not kind to this habit.

But books are. I can fall into the pages of a book as easily as I can fall into a bag of chips. And I don’t eat when I read. It messes up the book. (I am meticulous about my books. I never break the spine on a paperback and if the corners of pages in a book at the bookstore are folded, I will search through all the copies until I find the one that is least imperfect.) During my reading day, I only ate when hunger drove me to it, and only enough to not be hungry anymore.

It was always that way. Why did I forget that?

Stress

This one is the most important.

My attachment to books started during my recovery from meningitis. While re-learning to walk, the only thing I could do where I looked like all the other kids was reading. From then on, I consumed every book put in front of me, for better or worse (my mom handed me Anna Karenina when I was 9. I hated it, but I read it. Only took three years. Oedipus Rex was much faster. I was 10.) It was a great escape from a very hard life. Problem was, the hard things kept on coming, so I kept on reading. And who was going to tell a kid to stop reading so much?

It lessened a little for grown-up things like college and, well, work, but books still allowed me the space to handle my problems on my own schedule. And that’s what I lost when I stopped reading. TV can be entertaining. Podcasts, too. But you can never lose yourself in digital media like you can in a book. Everything is handed to you. There is no exercise of the consumer’s imagination in digital.

I admit it’s a fine line between allowing yourself to be consumed to the point of not dealing with your issues and using the escape of a book to help. All I know is that my anxiety level dropped by about 25% between the recovery of self and the space given by just one day (a day when nothing else was required of me and I wasn’t putting off other responsibilities). I am really glad to have that back, and I can see that books will remain important to me for reasons beyond the story.

Just like brushing your teeth

One of my friends recently asked me how best to manage a chronic condition.

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During the transition between noncompliance and acceptance, I clearly remember that all I wanted was to get to the point where I could relegate my regimen to a tiny corner of my life. I would be “normal” and it would become so easy and routine that the whole thing would take up no more of my attention every day than, say, brushing my teeth. I’m here to tell you it’s possible!

Well, sometimes.

For a little while, anyway. Or even a long while.

The reality is that it is possible, but it’s hard to maintain. You can go for years sticking to the plan you and your providers have devised. For me, that means nutrition plan, exercise plan, logging everything (logging covers different categories for different people -- symptoms, blood sugars, food intake, whatever information you need to understand the patterns of your condition), and several appointments every year. And when I’m on it, I’m really on. I feel strong and powerful, motivated, and present in all aspects of my life.

But then your condition begins to feel neglected, so it starts to have a tantrum to make you pay attention again. After all, no one likes being relegated to a brief bathroom routine twice a day. You get sick, or your biorhythms change (mine tend to do that as soon as I have settled into the right insulin dosage), or some event in your life overwhelms you with stress – difficult project, death in the family, it could be anything, really. That powerful feeling begins to fade, and your energy goes with it. You start to channel the energy you have into surviving that situation, and the easiest place to draw from is the voluntaires – the time you take to exercise or monitor or whatever it is you do to care for your condition. You say to yourself, “I will go back to it as soon as X is over.”

I went through this very recently. In fact, I’m just starting to get my feet under me. For two years, I followed my regimen so closely, I lost 30 pounds and my kidney disease started to actually get better (this never happens). Then I faced a situation where I had to take a project at work that I didn’t want. It was either that or lose my job. And my health insurance.

I told my boss on my first day that the situation was not going to be sustainable due to the location, commute, and an overtly hostile work environment. First, I stopped cooking, which was fine because I could always use frozen meals. Then, I stopped exercising because I was just so tired when I came home, I needed to catch up on sleep. (It’s not healthy to exercise when you’re exhausted, is it?) Finally, after about six weeks, the stress finally started to get to me. My blood sugars started swinging, which made me feel sick. There’s no predictability to how stress will affect blood sugar, so you’re always running to catch up. Functional is about all I could manage at that point. It got so bad that I asked one of my providers to write a letter stating that I absolutely could not work in that environment past a given date.

In real life, there is no way to stop the clock and hit reset. You still have your job, your family, your house, your car, school, whatever myriad responsibilities take up all of your time. Recovery has to be one baby step at a time. It’s taken me three months to get back to about 50% level of effort, as they say in my industry. I go back and forth on the nutrition plan. I cook, but I can’t stay away from sweets. I exercise the way I did at the beginning of my good stretch – cardio only. I have given up logging altogether.

The only element I still follow to the letter is seeing my providers. In fact, I have asked them to shorten the time between visits from four or six months to three. I need the external motivation, and they need to know what is happening. I expect that there will be a considerable delayed impact to my bloodwork. I live in fear of my kidneys regressing. However, I will not borrow trouble.

Instead, I will adjust. I went from little exercise to cardio and weights five times a week (exercise is the magic elixir for blood sugar control). I can do it again. I went from eating out half the time to cooking all but twice a week. I can do that again, too. I may not go back to logging, at least not formally. I hate it too much, so I would rather spend my effort on the first two right now. The other thing I will not do is dwell on the progress I have lost. What’s the point?

No, I will keep dragging my monster up the mountain one baby step at a time. One foot in front of the other until I reach peak performance once again. I will hand it my toothbrush and enjoy the view until I fall again.

To ER or Not to ER

When I was in high school, my mom made one of many trips to the emergency room (ER) with a blocked intestine due to Crohn’s Disease. This visit was particularly memorable because her doctor was out of town and the ER staff was inexperienced in what was then a fairly new treatment – total parenteral nutrition. They inserted the line into her vein in the wrong direction. Let’s just say it was painful and unpleasant.

When her doctor returned, he told her that if she ever had to go to the ER while he was away again, she could tell them how to treat her and they would be legally obligated to do that. I have often wondered how that would work since it is only lately that providers have started really including patients in treatment discussions. (Let’s face it, ER doctors in the mid-1990s would have not taken patient instructions well. Even now it would be . . . unwelcome.) I’ve researched the doctor’s advice from time to time, but could never find a legal authority a process like that would fall under. It took a combination of laws and a discussion with a friend to figure out how it would work.

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EMTALA*

The first part of this process is a bit of history, unless you are one of the 15% of chronic and autoimmune patients that still don’t have health insurance. For that 15% and the insecurity of the future of healthcare at this moment, I’d like to introduce you to the Emergency Medical Treatment and Labor Act (EMTALA), which bars hospitals from turning patients away if they can’t pay. (Keep in mind that this story takes place in the 1990s, when uninsured rates were much higher.)

Back then, and even now without insurance, ERs are not obligated to treat us unless we are about to die. It’s a common misconception that EMTALA says that all you have to do is get to an emergency room and they will fix you up. First, EMTALA only applies to hospitals that participate in Medicare. Second, the emergency room is only obligated to screen you for an immediately life-threatening condition and stabilize you.

That being said, EMTALA still has some juice if you are experiencing an emergency. Pair it with the next law, and you should be able to get what you need.

The Doctrine of Informed Consent

If you do decide that the ER is the best way to go, arm yourself with knowledge of the doctrine of informed consent. Basically, it means that, as long as you are mentally competent, you can refuse any treatment the emergency room proposes.

In my mom’s case, that means that if the ER doctor was not inclined to treat her the way she wanted (I believe a blocked intestine qualifies as a immediately life-threatening condition), she could keep refusing until they arrived at the right treatment for her. Or at least they were prohibited from subjecting her to a treatment she didn’t want.

There are definitely times when the ER is your only option for a chronic or autoimmune condition in crisis (i.e. the “cardiac incident” I had once because I messed up on my own medication and almost stopped breathing at work, but that’s a story for another day.) But in my experience, rushing, overworked staffs that have to literally work miracles with what they have, are an option of last resort, to be avoided unless a call to your provider (or whoever’s on call) results in an inadequate or unsuccessful course of treatment.

If you have to go, keep in mind that you are not entirely at the mercy of providers you don’t know. It’s hard to speak up for yourself in a situation so bad that it requires an ER visit, but you know what’s best for you and you have a right to receive the care you know you need.

P.S. Informed consent applies to all care – surgery, therapy, treatments prescribed by your provider in his or her office. If you don’t like the direction in which your care is going, you can always say no and discuss an alternative.

*(no, you didn’t miss a character in the Lion King.)