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!

Adventures in Overseas Travel: Lesson Four

Having spent a recent night on Concourse C at O'Hare airport in Chicago, I am reminded of the trials of my last international trip. That's not to say the trip wasn't amazing, but the logistics of it all left much to be desired, especially as it wouldn't have been nearly as bad if I had been healthy. And since 'tis the season for overseas travel, here is a series that will hopefully inspire you not to do what I did. Read Lesson One here and Lessons Two and Three here. 

Lesson Four: Don’t sweat the big stuff

Part One: Don't panic

Sometimes I feel like I am a disaster waiting to happen. And when disaster comes, it is never an easy fix. This year, I found out what happens when it comes overseas.

Three years ago, I visited the Caribbean for the first time. The moment I got off the plane, I realized that I may have failed to account for the effects of humidity on the adhesive tape that anchored my medical equipment. After a minor panic, during which I realized that the medical equipment company had no mechanism to easily deliver additional supplies to where I was, I worked it out and had a thoroughly good time. In fact, I liked it so much, I decided to go back for a milestone birthday trip.

For the second trip, I was very careful to pack enough supplies for a month (I was going for a week). Everything was going very well, including my first ever snorkeling trip. I had been careful for that, as well: only spending a few minutes at a time on the surface of the water so nothing would happen to my medical equipment – an insulin pump that I was heavily dependent on. It was amazing to watch the stingrays that looked like giant butterflies and sea turtles that surfaced for a breath of air right in front of you then dove back down to the (fairly shallow) bottom.

All was well until I woke up the next morning, when my blood sugar was very high and I couldn’t figure out why. I took a quick shot of insulin, and started testing my pump. That’ s when I discovered that the battery casing was cracked. Do you know what happens to electronics when they’re exposed to salt water?

So, I cleaned out the corrosion and replaced the battery. Everything would be fine.

Guess again. The buttons wouldn’t go down. The way it was explained to me later, grains of salt settled between the components in the buttons and prevented them from working.

No need to panic yet. I had a backup plan, imperfect as it was. I would just deliver manual injections – a minimum of eight a day at least every three and a half hours. Not ideal, but doable, at least for a few days. It's hard to estimate the peaks and valleys of insulin's effective period, especially when you are eating out for every meal, but increased glucose testing and overlapping doses would cut the sharp ends off the effective period. My blood sugars wouldn't be great, but they wouldn't make me sick. I was still in partial control and I was determined not to let this affect my enjoyment of my vacation. But I needed that pump as soon as I could get my hands on it.

Stay tuned to hear how I finally reached my tipping point . . .

The Old Ball and Chain

No, I don't mean a spouse or significant other. Technically you can do without those for a few hours. I hope. But there are things we schlep with us all the time, that would literally make us sick if we went without them.

Recently, we’ve been talking about the hassles of big trips for people with chronic and autoimmune conditions, but what about every day? I absolutely hate feeling encumbered. Since high school, when I shamelessly copied my best friend, I go as many places as possible with just my phone/wallet shoved into the back pocket of my jeans. That’s hard to do most days.

I was talking to another autoimmune patient last week about having to drag a lot of crap with us everywhere we go. When I travel out of town, I usually take a backpack. It doesn’t fit much: laptop, phone (and associated cords), a couple small snacks, a sweatshirt, and . . . a giant drug carrier. Not the one with the little squares for each day, but something that holds the big bottles. I tried the other thing, but got stranded beyond my supplies a few times, so not anymore. And it’s not just when you travel. It’s every day.

The daily bare minimum for me is phone and blood sugar machine, just for trips to the grocery store or out to dinner. If I am heading out for a while, water, juice, inhaler, extra strips for the machine. An entire day hanging out in downtown DC or at the beach, insulin and needles for an emergency. Oh, and if it’s hot, a cold pack so the insulin doesn’t go bad. Maybe some paper towels so the sweating cold pack doesn’t make everything else soggy.

I worked hard to move away from a backpack after I finished graduate school. My sister-in-law even conned me into buying a “girl bag,” a.k.a. purse. I use it very occasionally. And a clutch for a formal event? Never. They are not big enough for my machine. And what about the guys, who often don’t have any kind of bag, or people who have to drag oxygen tanks behind them?

I can’t do anything without that machine. I’m one of those strange diabetics who has never been able to establish a steady biorhythmic pattern, so my insulin dosages are a weird combination of instinct and guessing. Being caught out without one has caused trouble often enough that I have five of them. One in my car, one at the two places I travel most often, one at home on the days I forget it at work, and the one I take everywhere.

Then there is the issue of insulin. I’ve miscalculated and run out a couple of times at work, which results in nothing good. I am reluctant to take it to work because I might forget to cycle them out once I open them, and they run the risk of going bad if not used in time. I can’t afford to not use even part of a vial of insulin.

Gives new meaning to the phrase “ball and chain”, doesn’t it? What’s yours? What is the one (or two or five) thing that you can absolutely not leave the house without? You carry an extra prescription in case you run out far from home and would cut a long weekend short if you forgot it. So what's your ball and chain? I would love to hear your experiences in the comments section.

Adventures in Overseas Travel: Lessons Two and Three

Having spent a recent night on Concourse C at O'Hare airport in Chicago, I am reminded of the trials of my last international trip. That's not to say the trip wasn't amazing, but the logistics of it all left much to be desired, especially as it wouldn't have been nearly as bad if I had been healthy. And since 'tis the season for overseas travel, here is a series that will hopefully inspire you not to do what I did. Read Lesson One here. 

Lesson Two: There's no such thing as preparing too far in advance

On my second trip to the Caribbean, I was determined to not face a possible medical crisis on the first day, so I tried to prepare. I doubled the number of supplies I was taking. Half of my suitcase was filled with medical supplies. I brought entire bottles of pills so I would have what I needed in case I got stranded somewhere in addition to the usual traveling over-the-counter pharmacy. I even went to the doctor the week preceding my trip, so I could get new prescriptions.

As reliable as the office is, I did not anticipate the new computer system, which caused my doctor to delay calling in the order I needed. When Friday rolled around (I was leaving at 7 a.m. on Sunday), I went to pick it up. There was no record of a new prescription. Slightly alarmed, I called the endocrinologist on call, and she said she would phone it in right away. I called multiple times over the next few hours to see if the pharmacist had received a prescription for me, but the answer was always no. I figured it was just taking a while. The problem was, I didn’t have a while.

With less than 24 hours to go, I called the endocrinologist on call again. Turns out, 16 hours later, she hadn’t called it in yet. She’d worked until midnight. I get how difficult that is, but I had explained that there was a certain level of urgency, due to my access disappearing the next morning. It was getting difficult to remain calm. She promised to call it in as soon as she got off the phone.  

By the time that happened, it was snowing. I waited it out, figuring that they would need some time to fill it, and six hours should be plenty. Wrong again. When I finally got over to the pharmacy, still no prescription. This time she had called it in, but it hadn’t gone through. Nearing the end of my rope, I called the physician on call a third time in less than 24 hours. She was kind enough to talk directly to the pharmacist. I got my prescription, but had no time to test it before I left, as I’d been advised. Nothing like trial and error on vacation!

Lesson Three: 5:30 a.m. on a Sunday is not as early as you think

I usually drive myself everywhere, even the places some people might reach by plane. It's just one way I assert control of my environment. I am very careful about when I leave so I don’t sit in much traffic. I figured that, if I left my apartment at 5:00, I would arrive at the airport around 5:30 at the latest. That gave me 90 minutes. I would be fine – I didn’t have to park, there would be no lines to check my bag, security would be a breeze, etc., especially since the first leg was domestic.

Things I didn’t count on:

• When you reserve a Lyft/Uber in advance, it is perfectly plausible that they arrive on the later end of the 10 minute arrival window.
• Most people don’t have a lead foot like mine, so it will take more than 30 minutes to get to the airport.
• The process of checking a bag is a lot longer now that we have to do it all ourselves at kiosks.
• Even though TSA personnel should be familiar with common medical devices, they will still take every opportunity to pat you down and wipe some kind of indicator strip all over it.
• Wearing an ankle brace will set TSA all aflutter and they will start the swabbing process all over again.

When all was said and done, I just made it. When I went to drop off my checked bag, there were so many, we were all just leaving them in a big mess “behind the wall.” (This happened once at O’Hare with a standby flight, and that bag made it.) I was thankful that the second leg was delayed by an hour, but it didn’t help. My bag did not arrive until the next day. At least I was traveling with friends and I could borrow a shirt.

The bottom line: whatever time you think you need to get all your ducks in a row, double it.