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.

Struggling in the Red Zone

In American football, if a team isn’t performing to expectations, the commentators sometimes start talking about “struggling in the red zone.” That’s when the team gets close to scoring -- they’re battling in the “red zone,” the yards closest to their end of the field -- but they just can’t get the ball over the line.

Well, I’m struggling. In my head I shouldn’t be. The stress of a job change (after 11 years) is almost over. I’ve even allowed myself a week’s vacation and have already gone through the new company’s health insurance summary plan description, or SPD. The new company is an unknown, but all signs point to a new, exciting opportunity with intelligent colleagues and hands-off management. All good, right?

So why do I continue to stand in my own way?

After a year of not following a meal plan or regular exercise plan, and sometimes not even taking my meds properly, my brain is rewired with new habits. These habits were a lot easier to make than the old ones. No effort is involved in doing nothing, whereas, a lot of effort is needed to exercise every day and stick to a meal plan. At least I am back on a tight medication schedule again.

Another reason might be that when I initially started the push to lose weight and adjust to a healthier lifestyle, I had a catalyst, something external that drove my initial efforts until it was a habit. I am not entirely happy to admit it was a guy I had known years ago. I didn’t want him to see me at the size I had gotten to. He lived out of state and knew I wasn’t crazy about having my picture taken, so I had a little time to start a new routine. After a while we faded again, but even when I didn’t have him as a catalyst, I was able to stick to my plan for years. Now, I have no catalyst to get me over the inertia of a new start. It has to be a slower, more gradual, and sustainable plan.

Last week I listened to a podcast that may help me figure out how to get out of my own way. There was a small section where Daniel Khaneman (Nobel laureate who specializes in how we think about thinking) spoke about a college class 60 years ago, when a man named Kurt Lewin theorized that behavior was a balance of driving factors, which push you toward a decision or goal, and restraining factors, which keep you from getting there. In order to induce behavior change that sticks, you have to diminish the restraining factors as opposed to increasing the driving factors.

Turns out this is pretty counterintuitive. The podcast points out that most times when trying to change your behavior, whether self-motivated or externally motivated -- say a doctor or spouse is concerned and wants you to start walking 30 minutes a day -- the process starts with a combination of arguments, incentives, and threats: it’s only a half hour, the benefits far outweigh the effort, you will live longer, you’ll feel better, you will die if you don’t start moving more, etc.

They tried this on me when I was a non-compliant 16-year-old diabetic, and after logical arguments and incentives failed, they told me I was going to die of a stroke in a few years anyway if I didn’t change. It didn’t work. Perhaps they should have asked why I wasn’t following a regimen already and how I could have alleviated those restraining forces – fear, apathy, self-destruction?

That was 20 years ago. Now it’s on me. I have all the external tools, including a flexible work schedule. Now it’s time to take a good look at the inside of my own skull and figure out what I need from myself to finally get myself past the red zone and into the end zone.

It’s No Surprise to Me, I Am My Own Worst Enemy*

*Lit, 1999

Most –

No, scratch that. All of the chronic patients I know are perfectionists. We have to be, don’t we? We are given instructions by our medical team, modified to fit ourselves and our lives, in order to mitigate the symptoms and effects of our conditions as much as possible. Keeping on that path, as straightly and narrowly as we can allows us to live as normally as possible.

One friend with Celiac disease went out for Thai food the other night. She ordered the usually safe Pad Thai. Only this time, there was soy sauce in the Pad Thai, and she suffered for it. The symptoms were fairly mild, and over soon, but she still beat herself up mentally for the slip, even though it was an unforced error.

I do this to myself on a regular basis. I spent a lot of time deliberately not following directions from my doctors when I was a teenager. Everyone is young and stupid once, right? But I didn’t do it because I didn’t know what to do. I did it because I thought I knew better. The consequences were delayed so I thought I was getting away with it. Even the first round of serious complications – nerve damage (neuropathy) and fluid seepage into my retinas (retinopathy) – stabilized and subsided fairly quickly.

I got back on the straight and narrow then. I didn’t want more consequences. But the damage was done, and 10 years of “good behavior” couldn’t stop the development of kidney disease. There’s no direct evidence, of course, but I am fairly sure that my six years of teenage rebellion cost me about 50% of my kidney function and has shortened my lifespan. I carry a lot of guilt for that. So, any time I stray off the path my medical team and I have determined for me, I feel guilty that any mistakes might make my complications worse (and my life shorter).

That’s not fair. None of us is perfect and staying on a strict regimen is hard.

I’m Jewish and our most serious holiday, Yom Kippur, starts tonight at sundown. In my world, this is a time of reflection and atonement. We forgive those who have hurt us and ask forgiveness from those we may have hurt, whether intentional or not. So, why not ask forgiveness of ourselves?

That question has come up lately as my psychologist tries to get me to be gentler with myself. If someone told me they were doing what I was doing, would I be as harsh with them as I was with me? No, of course not. I would try to make them feel better and point out that they can always stop what is causing their guilt. Tell them that they can find the path they want again. It’s right there. Whenever they’re ready.

I can do that, too. I can forgive myself for past behavior, no matter how bad it was. I stopped, didn’t I? Not every new slip means a return to the old rut. But that’s hard, too. It means changing longstanding thought patterns and letting go of the habits of a lifetime. Like I said hard, but I bet it will feel better – lighter – if I do.

I know most of you aren’t Jewish, but this is an idea worth considering. We deserve a little gentleness, as hard as we work to keep ourselves healthy. We go through a lot—bad days we can’t explain, frustration with a body we can’t always control. So, let me ask you. Do you beat yourself up for every slip or most or a few? If you do, is it unconscious or do you hear your thoughts when you take yourself to task? Do you forgive yourself or have you not thought about it? And if not, why not?

Or maybe it should be, and if not, why not yet?

Birth of a Monster -- The Aftermath

Someone asked me recently to write about what it felt like to be a child patient. I had over half a dozen starts, but I ended up scrapping the article because it was too heavy.

Maybe that was my excuse because I wasn’t ready to put that period of my life down in words for everyone, even me, to read. But that’s not fair. Keeping it to myself or glossing it over to sound more optimistic can’t change what was or what would be. So much of my self developed from that one event and the nearly two years of recovery that followed. I just spent a happy weekend with maybe half of the people on the planet who remember that time, and I am reminded that it can’t hurt me anymore. I won.

This is the third of three posts where I will share the things almost no one knows or remembers from the beginning of my healthcare journey, and how the monster that personifies my conditions came to be. (Read part 1 here and part 2 here.)

The Aftermath

Thirty-five years ago, I survived meningitis. Two years after that, I had managed to recover from the paralysis of my left side. But it doesn’t end there. There were ripples, long shadows that I am still dealing with. My memory is much better for this part, or rather, my understanding, but the ripples are complicated.  They are physical and psychological, acute and chronic, affecting me and affecting others. Years of therapy have helped me understand the good (yes, the good), the bad, and the ugly.

The physical

The big stuff was behind me, but that wasn’t all there was.

• I had brain damage. I still walked into walls since I had lost some depth perception and I had seizures. I couldn’t ride rollercoasters. They were afraid that would make it worse. The first two went away. The second might have, but I missed that childhood fearlessness window, so I never tried.
• I had muscle atrophy in my entire left side, not something that can be fixed. It has caused a misalignment in the muscles in my back, which sends me to physical therapy occasionally, and may have contributed to a partially pinched nerve. My right side takes the brunt of any physical activity I do. I only discovered this when I was about 20. I went for new shoes, and the guy at the shoe store asked me if I knew my whole body sloped when I walked. Of course I didn’t. We tried to fix it with lifts, but it was so painful to shove those muscles back into alignment after that long, I gave up.
• I have a strength difference in the sides. The left side is about 20% weaker than my right. I can feel it, but no one can tell unless they see me lifting weights. The left arm just quits sometimes.
• I have had cataracts since I was 16, put there by the high doses of steroids I had to take during my illness and recovery. I should have surgery, but I don’t want to until I have to.
• I have permanently stained teeth. All those teeth whitening commercials really rub it in, too. But stains that come from a high fever are too deep for easy, inexpensive fixes.

The psychological

• I grew up too fast. After that I had no childhood. I had to know. Everything. My parents’ tenth anniversary was the summer I was seven, the same summer I started to walk again. They went to sailing school and left me and my brother with my grandparents. The only problem was that they had left the wrong instructions for my phenobarbital, a powerful drug that affects the nervous system. It is very addictive, a downer, and has a history of illegal abuse that lightened dramatically in the 70s and 80s, when it was replaced with a safer option, benzodiazepine.  We had a huge fight and I ended up locking myself in my room until they got the sailing school to radio the ship my parents were on to verify I was right. The alternative would have been a 7-year-old overdosing on barbiturates for 10 days. Dosages are difficult to calibrate, so an increased dose for that long could have resulted in coma and death.
• I hated having my picture taken. Hate might be too nice a word. Loathed. Abhored. Those might be better. I wanted no evidence of my time in a wheelchair. My shutterbug grandfather just wanted pictures of his granddaughter and I shut him down every time. Now I have no pictorial record of my triumph, which I regret. And I still hate having my picture taken.
• The closest friend I had dropped me as a friend because I wasn’t in her grade anymore, so I developed a mistrust of people and an extreme need for privacy. It made me doubt my value. My closest friends are my closest friends because they stuck around – they proved themselves -not because I invited them in.
• Boredom and apathy came often. School was easy, and what challenge could there possibly be after beating that one? I still struggle to find things that engage me for any amount of time.
• Then there’s the rage, oh, the rage. I didn’t learn until much later that the meningitis would turn out to be the catalyst every diabetic goes through to trigger the onset of my Type I diabetes. Most diabetics get a cold or the flu as their catalyst. But no, it seems my body must do everything in spectacular fashion, good or bad. It took eight years for the diabetes to develop, but when it did, I was beyond the usual level of anger new patients feel. I had already paid my medical dues, survived more medical baggage than most people would in a lifetime. Problem was, there was no outlet, no fault. So, the fury just sat there, boiling for about six years, but still simmering. I am just now learning how to find a life without it.

Harm to my family

My parents never talked to me about it, but I am sure it strained their marriage. The worst was the unintentional neglect of my brother. He was two when I got sick, a time when he needed the majority of the attention from my parents. Instead they had to be focused on me. I still feel guilty. I know it wasn’t my fault, but it wasn’t his, either.

Now for the good

• I am strong. I have no doubt. It’s something I’ve internalized, and can draw on when I need to steady myself. Nothing will ever be a crisis. 99% of likely life experiences aren’t going to be as bad as that one, so I can handle whatever you throw at me. Calmly and without drama.
• Learning is easy. The only way I could look like everyone else during was to read, so I did. A lot. I was lucky to have parents who indulged me when I disappeared into the bathroom for hours, the only place I could be (fairly) sure I wouldn’t be bothered.
• For the rest of the good, it’s hard to separate whether they’re from meningitis or diabetes or something else. There’s the risk aversion, the confidence in the value of the relationships I do have, and finding my worth outside of superficial concerns or other people’s opinions.

The bottom line is that being a child patient was a major foundational event for me, perhaps the foundational event. I have no idea who I would be without it, but I am fairly sure I wouldn’t like that person as much as I do this one.

Birth of a Monster -- The Recovery

Someone asked me recently to write about what it felt like to be a child patient. I had over half a dozen starts, but I ended up scrapping the article because it was too heavy.

Maybe that was my excuse because I wasn’t ready to put that period of my life down in words for everyone, even me, to read. But that’s not fair. Keeping it to myself or glossing it over to sound more optimistic can’t change what was or what would be. So much of my self developed from that one event and the nearly two years of recovery that followed. I just spent a happy weekend with maybe half of the people on the planet who remember that time, and I am reminded that it can’t hurt me anymore. I won.

This is the second of three posts where, I will share the things almost no one knows or remembers from the beginning of my healthcare journey, and how the monster that personifies my conditions came to be. (Read part 1 here.)

The Recovery

Shall I spoil the ending? Everyone loves a spoiler, right?

Well, I lived, and I recovered the complete use of everything that was paralyzed. Almost. I had no use of my left arm or leg. I couldn't walk, so no bathing myself, using the bathroom, going outside to play, feeding myself (try opening a bag of chips with one hand or serving yourself at the table) or writing (I couldn't hold the paper).

Recovery was difficult, much more than the actual disease. Child or adult, you don’t have control of a disease like meningitis. It has to run its course. Once they let you go home, that’s when the real work begins.

Much like the hospital stay, there are things I remember and things I don’t. What I didn’t know then was that my mother had decided that she would do everything humanly possible for my recovery for three years. If there was no progress in that time, she would ease up, but until then, there would be no rest for the weary. It only took half that, but sometimes she pushed so hard that I hated her.

I went to physical therapy every day for six months. Anyone who has been through physical therapy rehab knows that it’s not pleasant, and often painful. My sessions were no different. And they gave me stuff to take home. I particularly hated throwing bean bags through a tire. So tedious. They also gave me this round piece of wood with wheels to push myself around on, which means I must have recovered use of my left arm fairly quickly. I don’t remember that.

After the initial six months, I still had to go, just less often. There was also occupational therapy, which was a lot more fun, although I remember bending my left hand with my right to try to make it do what I wanted. Was that cheating?

Anyway, I got there eventually. Which is good because my arms played a vital role in the return of my mobility. I remember that moment more clearly than I remember yesterday. My mother was taking a well-deserved break from me. She’d left me on the couch in the living room while she was in her bedroom talking to her best friend. I was bored and trying to get her attention. They had given me a bell. Can you imagine anything more annoying than a bored six-year-old with a bell? She ignored me, and after a few minutes, I got so angry, I rolled off the couch and pulled myself into her room by my arms.

That was the first big breakthrough. There is a big gap in my memory between that and the next major step (literally). I go from that to pushing my own (empty) wheelchair or my mom holding me up by the belt loops in my jeans while I tried to make my left leg work.

It was July when it finally did. We were at my grandparents’ house. My mom was standing behind me and someone else, probably my grandmother, was standing a few yards away. My mom let go of me and I toddled over. Just made it. It was exactly what a toddler does with their first steps, only with a more difficult center of gravity and a fear of falling.

It got easier after that. In fact, when I talk about my recovery, I stop there, at 18 months, even though I wasn't 100%. It was the turning point, the moment we realized that I would be able to reclaim all I had lost. But there was no sense of triumph, no overwhelming need to celebrate, at least not for me, just an indelible memory and later, an adult’s perspective of the importance of the moment and what it would have meant if it had never happened.

I’m sure it was different for my family. The emotional burden was harder on my parents and grandparents, and the other adults who loved me than it was on me. They knew what it meant. All I knew was that I didn’t like being different from the other kids or constrained in what I could do. All that work my mother pushed was like chores. No different than doing the dishes – I didn’t want to do it, but it wasn’t my choice. If I wanted to be like everyone else again like I wanted my allowance, that’s what I had to do. 

Sometimes I read about similar stories or watch reports about sick kids on TV. None of it looks or sounds like what I remember. For me, at that time, it was simply part of my life story. Different from most, perhaps, but nothing more or less than anyone else might have done. I’m glad about that. If they had made it into a Big Deal, I don’t think I would have been equipped to handle what was to come.

Birth of a Monster -- The Illness

Someone asked me recently to write about what it felt like to be a child patient. I had over half a dozen starts, but I ended up scrapping the article because it was too heavy.

Maybe that was my excuse because I wasn’t ready to put that period of my life down in words for everyone, even me, to read. But that’s not fair. Keeping it to myself or glossing it over to sound more optimistic can’t change what was or what would be. So much of my self developed from that one event and the nearly two years of recovery that followed. I just spent a happy weekend with maybe half of the people on the planet who remember that time, and I am reminded that it can’t hurt me anymore. I won.

For the next three posts, I will share the things almost no one knows or remembers from the beginning of my healthcare journey, and how the monster that personifies my conditions came to be.

There’s a lot I remember clearly and a lot I don’t remember at all.

It started before the hospital, of course. It was February, flu season, and I wasn’t feeling well. Even so, my school was having multicultural night and I wanted to go. Kindergarteners sat on the gym floor, and I wet my pants. It was very embarrassing; I was almost six years old. I didn’t know at the time that my bladder was already paralyzed. The timeline is a little fuzzy, but I think that was Saturday night.

Sunday morning I still wasn’t feeling well. I asked my mom if I could take a nap on her bed. I was wearing blue footie pajamas.

I only know what I’ve been told of the next four days or so. That my grandparents called and when I didn’t answer the phone like always, my dad went to check on me. That he found me in a coma on his bed, foaming at the mouth.

Back then, we lived four blocks away from a hospital. My parents called my godparents, who rushed over. My godmother stayed with my brother while my godfather drove me with my parents. This is where luck lived for me. The ER doctor had no idea what I had, just the 105 fever. My brain was boiling in its own fluids. He treated me with penicillin, which just happens to be the treatment for meningitis.

I was comatose for three days. In that time, they catheterized me and tried to cool me with a special blanket. My parents were told to talk to me because there was evidence that comatose patients could hear. (That's true.) I remember the rise to the surface. It was like when you go through your transition sleep stage, when you know you are about to wake up but you’re not quite there yet. Sometimes I heard my dad playing guitar and singing to me. Sometimes I heard voices I recognized talking to each other or to me. I was trying to talk to them, but I couldn’t and I didn’t understand why they couldn’t hear me. The last push through the fog was a choice. I heard my godmother’s voice. I could either go back to sleep, or go talk to her. Either or. I chose the familiar.

The first thing I noticed was the catheter. I was at that age when kids are hyper sensitive to embarrassment. So, of course, all I remember from the ICU was how embarrassed I was that there were people there and I didn’t have underwear under the hospital gown.

I spent the next three weeks in a special children's ward. I wasn’t really scared. I didn’t understand enough to be scared. I knew I almost died, and that no one expected me to improve. I had pain, a lot of it.

There was the spinal tap after which they asked my mother if she could hear me screaming in the cafeteria two floors up. I can trace my fear of needles directly to that moment. I used to try to get out of bed and fall instead. I wet the bed a lot since my bladder was still paralyzed. So was my neck, but at some point my mother decided that it wasn't going to be and with one hard yank, she turned my head and loosened the muscles. I don't know why it worked, and there aren't words to describe how painful that was. Sometimes they wouldn’t give me anymore Tylenol for my headaches and I would lie in bed and cry from it, but not from fear. Fear wouldn’t come until later, when I understood more about what had happened and what mortality actually meant.

Burnout

Do you ever want to go to the hospital? You know, when you're so tired and you can't seem to get hold of your condition? When better control is just out of reach and the easiest path seems to be to stop time and let someone else press reset? The thought has crossed my mind.

For many of us, managing our monsters is a full-time job. Add to that your regular job, your family, and any other commitments you have, and it’s easy to get sucked into that vicious circle of “I’m too tired to do X, so I skip it, which makes me too tired to do X.”

It’s a nightmare of a merry-go-round. If you can’t avoid getting sucked in, how do you get off?

The last time I had to, I was in college. I had been non-compliant (out of control) since my diagnosis and starting to develop major complications. I was almost too tired to be scared. When I decided to start following a regimen, I could give it my full attention. Even though I was working, I had a four-month summer break to hit the reset button.  

Adult life doesn’t have an off switch. The reset button is a lot harder to find when you have bills to pay. I think my job would not take it well if I just stopped showing up for a week. Or a month. I would really love a month.

My reset button is a two-parter: repairing my sleep cycle and getting back to regular exercise. Shouldn’t be too difficult. Maybe 2 or 2 ½ hours difference every day to cover both. And who doesn’t like sleep? OK, keeping one particular nephew in mind, who above the age of 7 doesn’t like sleep?

But I put it off until tomorrow because there is always something else I need to accomplish during that time. Plus, my goals compete with each other. How often do I put off exercise to get enough sleep to get exercise? Six hours is enough, right? As long as I keep my food intake in line, I can put off exercise another day, right? Right?

 (I think I’m making my monster dizzy.)

Wrong. Skipping the things we need to control our conditions compounds the symptoms and you become less and less capable of performing in the roles you put before your condition. My dad compares it to the plates and sticks trick in old variety shows. The performer would balance a plate on top of a spinning wooden stick. But there would be six. All in a row. The performer would have to run from one stick to the next to keep them spinning at the proper speed. If one slowed and fell, they all fell.

The only way to get off that particular merry-go-round is to borrow from Nike and "Just Do It". I know, I know, I absolutely hate that line. But there is a measure of truth to it. It has to do with taking stock and prioritizing in a way that will allow you to do everything you want.

A three-step process

First, close your eyes and count off your priorities in your head. Really, there is only one top priority on that list. You know what it is. I know what it is. It has to be your condition, and whatever you have to do to keep it under control. It’s the one we hate the most because other people don't have to do it. It feels the most like a burden, a chore, and we get nothing in return for our hard work. Except we do. We get the rest of those priorities, at full energy, full attention, full participation.

Second, don’t think about your long term goal, or what you “should” be doing. Think about what you can do. Can you do it once a week? Every two weeks? Once a month? Do it without thinking too much, or you will end up thinking yourself out of it. Set it as a an appointment with yourself in your calendar. If you wouldn't skip a doctor's appointment, why would you skip an appointment that was easier to get to?

Last, don't second guess yourself. Whatever you do, it’s more than you were doing before.

Every day I seem to loose a few minutes more sleep. I know my priority, but I haven't executed my plan. I'm not sure what I'm waiting for. I remember how it felt to be well rested and how powerful and empowered I felt when I was exercising almost daily. My confidence rose with my progress. I didn’t struggle to get out of bed or drag during the day. Seems pretty worth the effort to find a way back. Time to just do it.

If You Can’t Stand the Heat . . .

Summer in Washington is, um, special. Innumerable tourists flooding the attractions in matching neon t-shirts, buses eating up all the parking. Protests, interns, festivals. Tons of stuff to bring people to city center. Nevertheless, sometimes I brace myself in an attempt to not take my city for granted. The National Portrait Gallery is a favorite hidden gem.

But I digress. Everyone who knows anything about DC knows the worst part is the weather. As I write this, we are in the midst of a string of over 10 days in the mid-to-upper 90s. The “feels like” temperature often crosses 100 degrees -- all of the heat and humidity of the swamp it was, but without much in the way of relief. No breeze, no swimmable body of water. (My friends who sail take a break in the summer because the wind dies, and the Potomac and Anacostia Rivers are questionable at best.)

I absolutely refuse to protest in the summer. Shuffling along for at least six hours carrying a sign and a backpack in that kind of heat -- oh, yay. But the rest is doable. With the right kind of planning.

I’ve talked about this before, about what I have to shlep with me every day. Summer adds something to it. Heat and dehydration can be dangerous for people with autoimmune conditions. Many of our conditions make us vulnerable to dehydration without the heat – Crohn’s Disease, irritable bowel syndrome, anything that comes with low blood pressure (which makes it hard for the body to retain water), certainly diabetes. Things that are usually treated with a lie down and Gatorade -- exhaustion, dizzy spells, heat stroke -- can land you in the hospital with IV saline if you’re not careful.

I haven’t been admitted to a hospital for over 15 years and I don’t intend to ruin my record. But I also don’t want to stay cooped up in my apartment for four months if I can avoid it. I’m sure you feel the same, so here are a few tips to help deal with the worst of the summer heat:

• Drive. There is often no help for our kind of problems in metro stations. In Washington, there are no water fountains or restrooms at most stations, and air circulation is poor in the underground stations, which is most of them.  
• Even if you think you’ve had enough water, keep drinking. I bring two bottles of water with me during the day, one frozen and one not. I also keep water in my car for emergencies. Warm is better than nothing.
• Take stock often. Do that mental check you run through every morning to see how you are feeling. I am lucky that I have a way to monitor my disease dehydration, so I test my blood sugar at least every couple of hours. I only have to guess on regular dehydration. Pay attention to your respiratory rate and do not allow yourself to wait for a drink if you are thirsty. Nutritionist Kathy Rodgers says that if you’re thirsty, dehydration has already started.
• Limit your time in the sun. The National Mall and trail around the Potomac River tidal basin is over three miles. If you are out in a place like that, stop in museums or in the shade at regular intervals.
• Don’t push yourself too hard. Keeping up with healthier friends and not accommodating your condition may seem like a good idea at the time, but it will make the problem worse. I’ve never been dehydrated due to the weather, but I have experienced dehydration by pushing myself to do cardio past when I began to feel dehydrated. For me, that means excruciating abdominal cramps that take a minimum of 20 minutes to ease even when I am guzzling liquid. Great way to kill a workout.
• If you’re at a beach or a pool, splash around as much as you can. Sweat is your body’s way of cooling you down when you are too hot. Give it a boost with a cannonball or a good splash fight with your friends.

Above all, trust your instincts. They are a well-developed tool that we don’t trust enough. If your body is telling you to get out of the sun, get out of the sun.

Enjoy your August!