Do The Right Thing

Last week, I introduced Reasonable Accommodation and outlined a little about how I was affected when how my former employer – let’s call them Stumble, Bumble, and Fall Consulting, or SBF -- failed to follow the law. Now I will go into more detail about what happened and what SBF could have done to be a responsible, accommodating employer.

First, let me give you the details of the situation. I am a contractor for the Federal government. For the first time in a decade with SBF, I went more than a week or so without doing client work. It’s a difficult situation, but a company as big as SBF has reserves to handle situations like mine. Finally, a project came along where SBF was a subcontractor to a smaller contracting company. I had no experience in the kind of work they needed, but it was client work and I wasn’t given a choice on whether to accept it.

I knew right away that it was going to be a bad situation. First, it was in one of the worst neighborhoods in Washington. There was no safe place to park, and in the four months I was on the project, there were four shootings in and around the premises where I parked, including the shooting of a pregnant teenager the weekend before I started. It was high stress even getting to the office, and that kind of stress affects blood sugar.

Additionally, I was commuting for a minimum of three hours/day with no flextime and no telework, which meant I no longer had time to exercise and plan meals as required for optimum care of diabetes.

Last, and worst, SBF was aware that the project I was walking into – as a task lead! – was a longstanding hostile work environment. The prime contractor had let people go for being pregnant and for being male, both illegal. The only people on that contract from SBF were there because, like me, they hadn’t had a project for a while. SBF knew they should have broken the contract long before I got there, but they didn’t. In the end, the prime contractor bullied me, and I was told I had to sit there and take it, without defending myself my team, or expressing concerns about how I could effectively do my job with the restrictions the prime contractor placed on us. This added to my stress level and contributed to the loss of control of my condition I am still struggling with.

From bad to worse

Most of us as chronic and autoimmune patients are protected by the Americans with Disabilities Act. As such, we are entitled to certain accommodations for our conditions. If our conditions get in the way of us performing our duties or, in my case, if our duties negatively impact our conditions, our employers must take measures (within reason) to adjust the situation so we can do our jobs and effectively look after our conditions. See below for a description of actions I took, actions SBF took, and actions SBF should have taken under the law.

I told my bosses at SBF before I started that the project was unsustainable, and that the HR department should look for another project as if I still didn’t have one.

• What SBF did: Nothing.
• What SBF should have done: Not made me take the project.

I repeatedly called and emailed my SBF bosses to keep them appraised of the situation and letting them know how the project was affecting my conditions. I begged them to take me off that project.

• What SBF did: Nothing, including not keeping me on HR’s radar for a new project.
• What SBF should have done: Arranged flextime or telework options, taken me off the project, or found me other work.

After three weeks, I found a promising new project that solved stress, commuting, and lack of experience issues.

• What SBF did: Barred me from taking the project because it was short-term (with the potential of becoming permanent), even though I clearly accepted the risk of being laid off if the project didn’t become permanent.
• What SBF should have done: Allowed me to take the project or found me another one.

In the end, the project and prime contractor wreaked such havoc with my diabetes regimen, my doctor had to write a note setting an end date to my participation on the project. SBF asked me multiple times to stay on since they couldn’t find anyone to fill such an awful position, but that letter at least protected me when the team I had worked with for a decade wouldn’t. Two weeks after I left the bad project, I started at the project I had found for myself, as it had turned into a permanent position.

This situation was so bad, I consulted an employment attorney, who, after an initial evaluation, thought I might have a legal case against SBF. I thought about pursuing it, but honestly, I don’t have the time, energy, or money to fund a lawsuit, at least right now. But I also haven’t completely abandoned the possibility, although I don’t know what the statute of limitations is.

Since then, I did really well on the project I found, and managed to stay with them when I left SBF. But I continue to struggle medically and haven’t really started to recover from the immense toll that unfortunate project took on my health. Next week, I will detail the medical fallout and why it is so dangerous for us when employers ignore their legal obligations to us.

Are You Seeing The Forest or The Tree?

I’ve wanted to talk about reasonable accommodation for a long time, but I had to leave my former employer before I felt comfortable doing that. It turns out not every employer takes the definition of “reasonable accommodation” to heart.

Reasonable accommodation says that, under the Americans with Disabilities Act of 1990, employers can’t discriminate against you because of a qualified medical condition. The definition of disability is opaque. Suffice it to say most, if not all of us in the chronic and autoimmune community are covered.

But what does being covered by reasonable accommodation actually mean?

The ADA says that if our conditions get in the way of us performing our duties, employers must make “reasonable accommodations” for us. This can include special office furniture, flexible schedules/telework, or even altering duties. For over a decade I had informal accommodation, mostly in the form of telework to make up for doctors’ appointments that would have eaten through all my vacation time. I am a contractor, so I made arrangements with my client and company staff on the project. No one seemed to care as long as I got my work done, which I did.

That changed in the summer of 2016. The details of the situation are for the next posts, but this situation turned out to be so detrimental to my health that my doctor wrote a note saying I could no longer be on that project. Nineteen months later, I still haven’t recovered.

My former employer’s failure to comply with reasonable accommodation laws caused more damage than I thought, and not just physically. One of the people responsible for the decision to keep me in the bad situation was someone I’d worked with closely for nearly a decade. I trusted him, which is not something I do easily or often.

When this colleague blocked my escape from the situation, it felt like betrayal, and man did that hurt. But instead of allowing myself to be sad and hurt, I did what they told me to and let righteous indignation sweep in to fill the vacuum where the hurt and sadness should have been. I built a bubble to protect myself from feeling what I didn’t want to. I was afraid that if I felt that, I would fall down a rabbit hole and not be able to climb out.

So, I built my bubble, and in doing so, I kept out all the good stuff, too: the excitement of a new job and good, impactful work; the satisfaction of maintaining this blog and connecting with some amazing people; and the support and plain old happiness I get from simply spending time in the company of people I love and trust. The mental effort it takes to maintain a protective bubble like that is massive. That’s the vicious circle I should have been looking at.

I have maintained my bubble since I started that awful project, and when my colleague, who was also my boss, couldn’t even be bothered to say, “Sorry to hear you’re leaving. Good luck in your new job,” a couple of months ago, it made it worse. After a decade there was not even an attempt at common decency, so I withdrew even more. Without the good to balance the bad, I felt more and more exhausted, making me less and less inclined to attend to my own health needs.

Now that I know what to look for, it will be easier to let go of my bubble, especially now that I don’t work for that company anymore. But that doesn’t mean it will be easy. I will have to allow myself to feel things I don’t want to feel and just be ok with it – my version of “leaning in.” That might take a while.

While I am not in a good place right now, I am not in a state of mind meriting a formal diagnosis, but obviously, my mental health has had a major effect on me physically, and it has derailed me for now. I believe it was actually dangerous for a while, with my diabetes out of control, and the resulting weight gain, which makes everything worse physically and metabolically. The one thing I did right, even during the worst of it, was go back to my therapist. I had been doing so well before that, I hadn’t needed treatment. But I needed it then. It felt like a lifeline.

Everyone has issues, sometimes more serious than other times. This is why it’s so important to have someone who can help -- a good therapist, access to a hotline (link to hotline listing), or someone who is trained to help you out of the more serious issues. I may have gone years trying to hold up my bubble, fighting with myself over what got my limited energy. Now it’s time to make improving my mental health a priority, and with it will come the energy I need to put myself back together physically. Or at least it will be a big step in the right direction.

Meeting Another One in (Almost) a Million

In the 35 years since my first terrifying medical incident, a rare and often deadly disease, I have never met someone else who survived what I had. That’s unsurprising since it only affects only one or two children in every 100,000, and there is a 10-20% mortality rate. In fact, of the three children with bacterial streptococcal meningitis that year, I was the only one who survived.

But a couple of weeks ago, I was in the elevator of my apartment building (yes, I am the kind of person who starts conversations in elevators), and I found one! Oddly, we were talking about the switch from hard copy bulletin board to digital bulletin board in our garage elevator lobbies. Someone mentioned that it really helped the elderly residents who had vision problems, and I piped up that I appreciated it because of my steroid-induced cataracts. The other meningitis survivor asked why I was on steroids, and *boom* there we were, two meningitis survivors on one elevator.

I suspect she was about 10-15 years older than I, and she was 16 when she got sick which is a little more dangerous than six, but it also means that we had it within a couple of years of each other. Weird, right?

We got off the elevator and had some time to compare notes. We were both in a coma. Hers was longer, but my fever was higher. We had similar experiences coming out of our comas (too personal to share here), and we both had major, lasting side effects. She lost 10 years of memory, going from new driver to first grader in the space of her coma. She had to relearn everything she’d lost in those 10 years. I didn’t have 10 years to lose, but I lost some motor skills and the use of the left side of my body (temporarily) through paralysis.

That meant that both of us had to relearn how to go to the bathroom, how to write, how to feed ourselves. She recovered faster than I did, but it left is both with some . . . things. She still has muscle spasms and I have back issues from muscle atrophy and occasional shooting pains from the base of my skull into my left shoulder, occasional reminders that will never go away completely.

As we stood there in the lobby, it was weird to have so much in common. Have you ever had the feeling of being happy to see someone you had never met before? And that you very likely will never see again? I live in a building with over three thousand other people. In over 10 years, I had never seen this woman. I gave her my card, but if she hasn’t reached out in the last month, she probably won’t.

And that’s ok. When you have a rare condition, sometimes it’s enough to know there’s someone else out there just like there. However, instead of waiting to find support in random elevator conversations, you might want to find an actual support group, either online or in person. There’s nothing quite like finding the people who know your condition as well as you do. For all the ups and downs you weather every day, you will never have to explain it to them.

2017 -- En Fin (The End)

The holiday season is approaching its end. In a few days, hundreds of millions of people will stay up too late with a bunch of strangers celebrating . . . what? That they survived the year? The beginning of a new one, where we may or may not stick to idealized, nearly impossible resolutions? Why do we need to wait for a whole new year to set goals for ourselves?

I’m sure you can tell that I am not much of a celebrant. (Although, to be fair, perhaps surviving THIS year is celebration-worthy.) However, that has not kept me from developing a New Year’s tradition.

Lame Year’s Eve

It’s exactly what it sounds like. Three of us who grew up together 500 miles away from here plus one husband gather at Moose and Squirrel’s house. (They’re the only ones who have a house.) We catch up while playing cards or watching movies until we fall asleep on the couch. Then we wake up just in time to watch the ball drop in Times Square and go home. Lately, we have even taken to adopting a country with an earlier midnight and celebrating around 9:00 p.m. our time. We’ll make that country’s food and try to track down some shots of their midnight. This year, it’s Brazil, specifically Rio de Janeiro. Who wouldn’t want to celebrate New Year’s with Rio? (Notice I did not say “in.”) I am making risotto cakes with tomato coconut sauce this year. A good time is had by all and we don’t lose New Year’s Day to the recovery.

The funniest thing about it is how many people seem to prefer something like that to their bigger, more formal plans. The best thing about it is that I get to spend some no-pressure, quality time with part of my support system. These are the people who knew me before autoimmune conditions. I mean, how many friends do you have that you’re ok falling asleep in front of?

This year was hard, and I am glad to see the back of it. I hesitate to say that 2018 can’t possibly be as bad, since Murphy has a way of proving me wrong. So, whatever happened this year, and whatever’s coming this year, I’m glad I’ll be spending the end and the beginning with Moose and Squirrel.

If I Must

If I must make a New Year’s Resolution, I resolve to laugh more. Sometimes we get so bogged down in our chronic lives, we don’t realize what we are missing. But there is a reason “Laughter is the best medicine.” has survived a generation or two, and now the saying is borne out by science.

I’m sure you can feel the stress drain from your body with a good belly laugh. Or you’ve suddenly started laughing in the middle of a fight about something that seemed serious at the time. But did you know there are biochemical benefits as well? It strengthens your immune system, releases endorphins, which relieve pain, and it increases blood flow, which is good for your heart.

Robert Frost said, “If we couldn’t laugh, we would all go insane.” So, in the interest of collective sanity, I invite you to share my resolution to laugh more in 2018.

What are your traditions and resolutions for this year?

Not ok

Do you remember Successories, those posters (and so many other products) that had “motivational” sayings on them? Fifteen or twenty years ago, they were everywhere – offices, dorm rooms, and gyms across the country. [Full disclosure: I had a desk calendar. Our office manager chose it.] I suppose the idea was that if you were struggling with Gratitude, Collaboration, Excellence, Integrity, Perseverance, (all those things you’re already bringing to the table), you could just look at one of those posters and muster the strength to be all you could be, to borrow an Army slogan from roughly the same timeframe.

I have seen a lot of articles mimicking that sentiment directed toward patients struggling with difficult conditions. The main theme is, “Everything is going to be ok. You’re going to be ok.” That’s good some of the time. Not all of the time. The fact is, these conditions are scary. Sometimes you’re not going to be ok. And that’s ok.

When I was diagnosed with kidney disease, I had a very kind doctor who let me sit in her office and cry for an hour while I called my dad and my boyfriend. I was really scared then. It didn’t feel like I was going to be ok. And that was fine. It was a normal, if overwhelming, reaction to a serious condition. It didn’t help that most people diagnosed with that condition were decades older than my 29 years old. It made me feel that I was that much closer to the possible death that came with it. (The most common causes of death in diabetics are heart disease and kidney failure.)

At that time, I probably would have punched someone who told me everything was going to be ok. I needed time to process, to adjust, and to prove to myself that maybe that was true. I’m not saying that we should allow ourselves to develop a victim’s mentality, but there are more dimensions to the psychological impact of chronic and autoimmune conditions than can be addressed by, “It’s going to be ok” or any other simple motivational saying (I’m looking at you, Nike’s Just Do It).

I wonder how those of you with chronic pain feel about that? Or multiple sclerosis? Or cancer? Or any of the other conditions that challenge you every day or come with the possibility of a long, slow degeneration? I imagine that, like me, you’re ok in waves – up for a while, then down, then up. Hopefully the ups last longer than the downs, but sometimes they don’t.

So, yes, it will probably be ok, but it’s perfectly acceptable to feel like it might not, as long as you don’t let that feeling interfere with getting there. And if you do start to feel like not ok is taking over, make a call.

Does your Chrismukkah suitcase sound like you’re carrying a pharmacy?

Love ‘em or hate ‘em, the holidays are here. When I travel home, we don’t have any more tension than the average dysfunctional family. There’s no yelling or alienating political discussion (we all know what to expect from the others). There are small celebrations to suit a small family. Sometimes I even forget to light Hanukkah candles. Because I forget it’s Hanukkah for all eight days. But, I do enjoy the time with my family, usually at Thanksgiving.

It’s complicated, though. My monster is best behaved when I follow a routine. The holidays are anything but. My brother has four kids and my dad is in his 70s, so that means I’m travelling to make it easiest for everyone. I have to leave my comfort zone, the place where I know who to call and where to go in case of emergency. Even my immune system seems less challenged in my own place, even if all six of my brother’s family pile into my one-bedroom condo.

If your body works anything like mine, the only way to get through holiday visits is to plan as if you were going to another planet.

1. Plan for prevention. Bring bottles of medication instead of separating out what you need for the time you will be gone. If you use consumable medical equipment, make sure you have several of whatever you need and check at least twice. Maybe once more before you leave. The last thing you want is to be held up on the way home by weather, traffic, or overbooking and be short.

Start taking vitamin C a few days before you leave (There are tons of immune system boosters that work to varying degrees, but I prefer the classic.). If you don’t get sick, you can stop taking it a couple of days after you get home. If there is anyone in the household you are visiting who is already sick, take as much as you can. You will know when you’ve taken too much vitamin C if you start feeling nauseated.

2. Plan for every possible sickness. I have a whole separate bag to transport my traveling pharmacy. It consists of every over-the-counter and as-needed prescription I have. With suppressed immune systems, fevers, colds, sore throats, and coughs are all significant possibilities from a quick trip home for the holidays.  

3. Know what your challenges are likely to be and have a strategy to deal with them. Whether it’s suspending your ‘rules” for the time you’re away, looking for the closest gym to your in-laws’ house to maintain your workout routine, or asking your host for detailed menu plans to help you, make sure you have a plan for every challenge you can think of.

4. Only you know what you can handle, but often doing something that makes you stand out from the rest of the family is difficult, and can seem silly for just a few days. But falling out of your routine for those few days can knock you off track for longer (I’m speaking from experience, like when I let playing with kids replace exercise and not picking it up again even though there aren’t kids to play with in my apartment), so enlist help. Find someone you trust for backup or announce your plan to the whole group. You don’t have to give a reason, just state your desire to accomplish your goal for the time you are there. Sometimes just talking to that person(s) is enough to keep you on track.

I instituted these plans for myself after my first couple of visits with multiple kids. For whatever reason, if a kid has a light cold, I get it 10 times worse. More than a few times I’ve driven home thinking I was fine only to realize I had a fever of 102+ when I got up to my apartment. At this point, I always expect to get sick, and it’s a family joke/congratulations if I don’t (I didn’t this year – yay!). Even if I do get sick now, it’s not nearly as bad as it was. I’ll take that.

We at The Patient Advocate’s Chronicle wish you a happy, healthy, and well-planned holiday!

Still Sleepy?

A couple of weeks ago, I posted about the importance of sleep. It would have been better if I had written about the importance of lack of exhaustion. As I began to catch up on sleep, I still couldn’t shake the feeling of being tired all the time. It was better, but still present enough to be a stumbling block. So I began to consider other possible causes. Sometimes exhaustion has nothing to do with how much sleep you get. Chronic and autoimmune conditions that affect hormones or metabolism can be just as guilty. Turned out adjusting my blood pressure medication did wonders, so let’s start with that one:

Hypertension (high blood pressure): Tiredness is a common symptom of hypertension. It causes the constriction of tiny arteries called arterioles. Your heart has to work harder to pump blood throughout your body, which makes you tired and out of breath. Risk factors for high blood pressure include diabetes, being overweight, lack of exercise, race, gender, smoking, and drinking.

Anemia (iron deficiency): Your red blood cells come equipped with hemoglobin, an iron-rich protein that bonds to oxygen molecules and distributes the oxygen to the rest of your body. When there isn’t enough iron in your red blood cells, your tissues don’t get the oxygen they need (including your brain). Lack of oxygen makes you tired, too. Many things can cause anemia, even something as simple as an iron-deficient diet or a heavy period. Chronic conditions like cancer, HIV/AIDS, rheumatoid arthritis, kidney disease, Crohn's disease, and other chronic inflammatory diseases can also cause anemia. (Please note that there are multiple types of anemia, but here I am talking about simple iron deficiency.)

Hypothyroidism (Thyroid imbalance): Hypothyroidism is when your body doesn’t produce enough T3 and T4, the hormones that regulate your body’s internal temperature, metabolism, and heart rate. It is not uncommon for hypothyroidism to go undiagnosed. As with other types of hormone deficiency, your body has to work harder to function properly, which makes you tired. But with hypothyroidism, exhaustion can come from too many directions to list here. Read this for an explanation of most of them.

Sleep apnea: Sleep apnea is when you don’t breathe properly while you are asleep. Instead of breathing evenly, you briefly stop breathing and/or breathe shallowly. Disrupted sleep causes exhaustion during the day just like hypothyroidism. Symptoms like exhaustion and snoring are commonly accepted as “just life,” so sleep apnea can go undiagnosed for a long time.

Undiagnosed condition. There are a lot of conditions that cause exhaustion even when they are being treated properly. Before they are diagnosed, or if they are misdiagnosed, it can get extreme. For example, before I was diagnosed with diabetes, I was sleeping 14 hours a night and still falling asleep in second period. No one bothered to mention that to my mother, so I continued misdiagnosed for several months. In fact, it was when I told my mother that I was too tired to school, she had me tested. (After responding, “Not in my house, you’re not.”) And if your condition is one that can cause dramatic weight loss, that’s like a double whammy – all you systems slow down and you enter starvation conditions, even if you are eating normally.

Drug interactions: I bring this up because of a particular incident I had at work about 10 years ago. I was a newly diagnosed chronic kidney disease patient, and one of the most common treatments for CKD is a class of blood pressure medication called beta blockers. If you have ever had asthma, even if you have grown out of it, you are not supposed to take beta blockers. Well, I forgot to tell my doctor because I hadn’t had it for years. As we adjusted my meds up to properly treat the hypertension, I began to feel tired and breathless, especially when I walked up the stairs. Basically, the beta blocker was working on both my blood vessels (which it was supposed to do) and on respiratory passages (which it wasn’t supposed to do). After just a couple of months, I went to an ER because I wasn’t getting enough oxygen. We knew because my lips had turned blue.

Exhaustion is common. Maybe you can never get to bed on time, or maybe you have young kids who keep you up at night. Or maybe it’s a common problem with a not so common cause – an autoimmune condition. Take stock. If you suspect your tiredness is due to causes other than everyday circumstances, schedule an appointment with your primary care physician and discuss it with them. If there is something medically wrong, better to treat it earlier than later.

NOTE: This post addresses physical, not psychological causes of exhaustion.

A Plea From The Susceptible

Today’s post is brought to you by my Monday morning, when I sat down at my desk and immediately heard three obviously unmuffled sneezes followed by a loud “oh, my god, my throat.” Only a thin cube partition separated me from all that contagion.

I just got home from four days with my family, and it appears that I may have gotten away with a clean bill of health even though one of the kids was sick. She was very careful and I washed my hands enough to crack the skin on my knuckles. With four little ones, someone usually has some kind of sniffle, so I only come home healthy about 10% of the time. The last thing I need is to pick up whatever a colleague caught from his family over the holidays. So, if this sounds like you, even a little, please stay home.

Let me explain.

A healthy immune system’s job is to be able to distinguish the difference between its own tissues (you) and invaders like bacteria or viruses. Autoimmune patients have overactive immune systems that identify parts of your body as invaders, which damages previously healthy tissue. For me, around sixth grade, my body decided to attack my pancreas until the part that produces a hormone vital to my ability to process food, was dead. Not just dysfunctional, but dead. As a doornail. (Type 1 diabetics have no insulin production, as opposed to Type 2s, who have faulty insulin production.)

After developing their conditions, some autoimmune patients also develop a suppressed immune system due to the medications they take, like immunosuppressants for transplant patients, chemotherapy for cancer patients, steroids for lots of things, and glucocorticoids for allergies, asthma, or conditions caused by overactive immune systems. Other times it’s the condition itself -- arthritis, certain types of anemia, scleroderma, Type 1 diabetes, etc.

I actually fall into both the medication and condition categories, which makes me vulnerable to every cough, cold, or flu that comes my way. It’s one of the reasons I don’t take public transportation. And when I do get sick, it takes forever to fight it off. The flu might take you out for three days. I once had to struggle through a fever and sore throat for a month.

But what about my family? I chose to visit even though I knew someone was sick. That’s right. I chose. I have to go to work, so it is not my choice to work in an environment contaminated by your cold, flu, or on this particular Monday morning, bronchitis.

I guarantee you have colleagues on some of the medications listed above or who have some of the conditions that suppress their immune systems. Starting a conversation with “Stay away, I’m sick” or “I feel better than I look” isn’t good enough.

So, I’m asking, no, pleading with you to stay home when you are sick. Please. It would better for both of us. You can heal more quickly by sleeping when your body demands and I can let my immune system putter on as usual, imperfect, inefficient, but good enough for the daily grind.

Words Matter

Yes, I am going to do that cheesy Thanksgiving thing where I talk about something I’m grateful for this year.

Twenty years ago, an ophthalmologist at the Joslin Clinic said something that changed the course of my condition. It was during a pre-surgical appointment, probably an offhand comment. I was a scared, noncompliant diabetic facing eye surgery decades earlier than the average patient. I don’t remember the exact context, and the statement was not intended to have an impact, I think. But it did, because he said it at exactly the time I needed to hear it.

“MD does not stand for medical deity.”

With seven simple words, my ophthalmologist, Dr. Timothy Murtha, dropped control of my life into my lap. I had been governed by doctors and parents for the six years previous, a girl who’d been through the medical wringer and ended up knowing way too much to be completely cut out of treatment discussions. Without a voice, fear was amplified, as was rebellion. Funny how they misbehaved hand in hand back then.

From that day forward, I was allowed to actually say no, not just nod my head and accept what others decided for me. I could tell my providers what I wanted, and we could work it out together. It’s how I’ve built such a strong team of providers.

Recently, I returned to the Joslin Clinic, the global gold standard for diabetes care, for the first time since I was in college. I’d volunteered for a study that would track the development of serious complications. Just before I went, I realized that there was every possibility that Dr. Murtha would be there that day.

When I arrived for my appointment, I explained what I wanted to do. My contact told me that the doctor was in the office that day and didn’t start seeing patients until 1:00, so there was a chance I could steal a few minutes of his busy schedule.

As my appointment wore on, it became clear that it would take much longer that I originally thought. I began to get impatient and nervous. I wasn’t sure why. After all, if I didn’t get to talk to him face-to-face, I could always send an email. But then, why hadn’t I done that in the intervening decades?

In the end, the doctor agreed to see me during his lunch hour. As soon as I sat down, I got that unexpected lump in my throat that sometimes happens when you feel more than you want to. I thought it was just going to be a simple thank you, but I think instead the lump was a subconscious acknowledgement of how different things could have been if he hadn’t created that verbal fork in my road, which had allowed me to take a better path.

We chatted for about 10 minutes. He did not remember the words that had so changed me. (Of course he didn’t. He must have seen thousands of patients in the 20 years since I’d been there.) It didn’t matter. I got to tell him how much those forgotten words had meant to me, and he was glad to see how far I had come. At a place like Joslin, so many of his patients drift off into their lives after treatment, he rarely gets to find out how they are doing.

It’s hard to remember what we do have sometimes when we struggle with our own bodies, especially if you’ve been up twice in the middle of the night to deal with faulty medical equipment and you still have to be at work by 7:00. Or when your body decides to take a random vacation from any semblance of normal functionality. But the ups and downs will settle eventually, and you will return to your pain-in-the-butt routine, beleaguered, but grateful for the life you have.

Not Like a Baby

Ah, sleep. The domino by which all the rest fall. You’ve been told a thousand times that lack of sleep is bad for you. It makes you, well, sleepy. Your mental acuity drops, you feel sluggish, your muscles don’t do what you tell them. If all this happens to a healthy person, can you imagine how much harder a chronic patient’s body has to work to get them through a day without the right amount of sleep? There is considerable evidence that lack of sleep can increase both blood pressure and insulin resistance, as well as cause other health issues that can exacerbate chronic and autoimmune conditions.

And the worst part is, you can’t just sleep more to make up a sleep deficit. it might take a month of an extra hour of sleep every day to catch up.

A sleep deficit is a primary tool in my self-sabotage campaign, the excuse I use to overeat and skip exercise. I tell myself sleep is more important. If only I were caught up on sleep, being too tired to exercise wouldn’t factor in. Neither would eating sugar to give me an energy a boost.

But why? Why do we need so much? As long as you get some, isn’t all sleep the same?

You know it’s not. If you want to resolve a (non-clinical) sleep issue, first understand how sleep works. Everyone has an internal 24-hour clock that governs the hormones that put you to sleep and wake you up. It’s called your circadian rhythm. It still takes its cues primarily from light and darkness. When it’s light outside, it’s time to be awake. When it gets dark, it’s time to sleep. However, our society no longer operates in conjunction with sunrise and sunset. We use electric lights to dictate our own schedules, often without realizing how counterintuitive it is to our natural functionality.

Second, understand how we use light and how it affects sleep. Turns out light is complicated. There is a price to pay for that incredibly clear, vivid device screen because of the type of light it uses to project images. No matter what size it is, that screen emits “short-wavelength-enriched light”, which has a higher concentration of blue light than natural light does. Blue light suppresses melatonin -- the hormone that tells you it’s time to sleep -- more than any other type of light on the spectrum. So if you’re one of those people who reads on a tablet before bed or uses the TV to cure insomnia (guilty), you might be making it worse instead.

Sleeping with screens on or just after you turn them off can affect both length and quality of sleep. Ideally, adults should get somewhere between seven and nine hours of sleep, enough to spend the right amount of time in each of the five sleep cycles.  The stimulant effect of our screens make it hard to fall asleep when we intend to and upset the balance of light, heavy, and REM sleep. That kind of imbalance can affect how you feel as much as not enough time asleep.

Third, find a solution that works for you. Everyone’s will be different. I am going back to my childhood. When I was little, my parents used to read me to sleep. So, tonight, I am going to set the TV timer and turn on a podcast that comes close to the kinds of stories my parents used to read. In fact, some are exactly the same stories, just a little more grown up. I’ve tried this when I can’t sleep and I’m always out in minutes when I do that (I listen to the whole podcast another time – thanks, Myths and Legends!).

Just as sleep is the domino that brings all the others down, it is also a strong foundation to build upon. There is a reason I use it as my favorite excuse. If I don’t feel tired, it eliminates one of the biggest roadblocks to reaching my goals. If this works, I’ll be well on my way.