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.

When do you go to the doctor?

Not those appointments. I mean the ones for regular person problems. Many of us with chronic and autoimmune conditions lead a double life, one filled with people you work with and people you love, the other with people who know you on a level where you can’t decide whether it’s good or bad that they call you by your first name. Those are your doctor(s), their staff, even the pharmacist who sees you on a monthly basis. It’s like a secret family you only discovered upon your diagnosis.

Set those aside. Let’s talk about all the times you knew you should have gone to your General Practitioner (GP)/Family Doctor/Internist, whatever you want to call it, and didn’t. It was too much of a hassle, or you were sure it would clear up soon, or you thought you would be fine without a visit, or even a call or email.

We all do this – rationalize our way out of doctors’ appointments we don’t want to go to, condition or not. Healthy people do it because they think they don’t need to. We do it because it seems trivial compared with the stuff we deal with daily.

I once ignored the need for a GP. But my specialist got tired of treating my sniffles and coughs. He gave me the information for his GP with the thought that sending me to his doctor would get me over my pickiness. Well, it did, but I waited so long that the doctor he referred me to retired. It was sheer luck that the one who took his place was such a good fit for me.

I remember going in to see him for an ingrown cuticle. I felt like an idiot making a doctor’s appointment for a boo boo on my finger, but it was swollen and I had started avoiding using it when I typed. When I said that to my doctor, he laughed and asked me if it hurt. Of course it did, which was why I was there.

Or the time I had a sore throat for over three weeks. I had a fever for the first few days, but it went away and I didn’t check again. I thought the remaining symptoms were allergies, but I finally got tired of my usual haphazard mix of prescription and over-the-counter meds not working. Turns out the fever had never actually gone away. Which is not good.

You know how your body works, and you know when something isn’t right. Maybe a medication needs adjustment or your biorhythms have changed or you’re just not feeling well. Or you have a boo boo that won't go away. Give it a reasonable amount of time (a few days), and if whatever it is doesn’t show signs of recovering, get help to figure it out. The “normal” stuff always hits us harder because our immune systems are busy fighting themselves. Few armies can win a war on two fronts without help. That's what your doctor is there for, and it never hurts to ask.

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!

Conversations with a Retired Healthcare Executive (Who Just Happens to be My Father)

Chapter 3: Getting to the bottom of what's actually covered

Health insurance plays an outsized role in our lives. But does anyone really know how it works? Or, for that matter, what it really says? In this series, I will be talking to my dad, a retired healthcare executive, about a variety of topics to get some clarity on private (employer-supplied) health insurance.

Jeremy Sachs spent 30 years working for a Fortune 500 insurance company. During much of that time, as House Counsel for the Employee Benefits Division, he advised corporate managers of the Division on a wide range of legal issues relating to the Company's group health insurance policies, including during the times when the Health Insurance Portability and Accountability Act (HIPAA) and the Americans with Disabilities Act (ADA) were passed and instituted.

This series does not apply to Medicare, Medicaid, Obamacare (The Affordable Care Act, or ACA), or individual health insurance, unless otherwise specified.

Once upon a time...You’ve just leapt into the next step of your career at the Most Selective Company in your field, or MSC. MSC offers several coverage options under the Marginally Generous Insurance Company, or MaGIC. The enrollment period for new employees is 14 days. If you don’t enroll in the given timeframe, you will lose whatever coverage options you had until the next open season.

You lug home what feels like a banker’s box full of policies to sift through and forms to sign, but you know health insurance is the most important one. You have an expensive medical condition and can’t afford to pay for your drugs or doctors’ appointments out of pocket. But you’ve never had your own health insurance policy.

What do you do now?

The goal of a health insurance plan is to spare your wallet as much as possible. You will need to know what you can afford, what your needs are likely to be over the next year, and which of the plans MSC is offering covers the most of those needs.

First, the code key (every indecipherable document has one):

Find the short one called something like Benefits Booklet or Benefits Summary or Highlights of Your Coverage. This is the one that gives an overview of all your coverage options: your monthly premium, deductible, and coverage levels for each type of plan offered according to how many people will be covered (single person, single + spouse, family, etc.). This is like the executive summary. It only hits the high points, but does not say what, exactly, is covered. And what isn’t. For that you will need …

The longer one, typically 30-40 pages. The technical term for this one is the Summary Plan Description (SPD) and will have a longer title, likely with the words comprehensive and group in it. This is the “authoritative” document. If there are discrepancies between the summary and the SPD, go with the SPD.

Second, what actually needs to be decoded?:

Once you have those two documents in front of you, feel free to pull in your partner or spouse if you have one to share your misery. You are going to do a document comparison! Lucky you.

The problem is, in order to choose the best plan, you will need to compare plans both to your list of needs and to each other. Wait, you don’t have a list of your needs? OK. That should be easy enough (and a good reason to put off actually looking at the policies). In order to start compiling your list:

• Review your family’s medical history.
• Make a list of the types of services you have needed, and the ones you think you will need. For example, if your condition requires consumable medical supplies (not drugs), you will want a plan that lists those kinds of supplies in the “Are Covered” list.
• Highlight the things on the list that are the most important to you: the most likely, most expensive, most frequent, etc.

Last, cost estimates (yes, they are as tedious as they sound – fair warning):

Once you have your list in front of you, and anyone else you want to torture sitting with you, take a look at the shorter document and assess if any of the plans would kill your budget completely just by the premiums and/or deductible (if it’s not listed separately, make note to ask whether the in-network and out-of-network are separate or not). If so, you have eliminated one plan to compare.

Keep the summary open and open the SPD. You don’t want to hear this, but now you have to read the whole SPD. There is a place in that document that has an exhaustive list of what is and isn’t covered, but clarification often comes in other parts of the policy. Write any questions you have in the margins or on the paper that holds your list. Cross them out as you come across the answers. If the questions aren’t answered by the time you finish, you should ask MSC’s Human Resources staff for answers before you choose your plan. If the HR staff has to reach back to MaGIC for answers, be persistent, and remember that you are on a deadline.

When you’re done, find that page in the SPD that you’ve already read with the list of what is and isn’t covered by the plans you are considering. Check it twice. If Santa can do it for a third of the planet, you can do it for a couple of health insurance policies.

Once you have an idea of the plan you want, you can get a pretty decent estimate of your annual expenditure by estimating how many times you will need the types of services on your list and multiplying that by the fee listed on the summary for that service. Highlight anything you will need that isn’t covered and add that to the total, along with the out-of pocket maximum or deductible (if you’re like me, you burn through that in less than six months.), and the monthly premium times 12.

Now you know what’s covered and what isn’t. MSC has answered your questions. You’ve estimated what your costs will be over the next year. Time to choose a plan. Congratulations! You’re covered.

~The End~

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, Lessons Two and Three here, and Lesson Four Part One here. 

Lesson Four: Don’t sweat the big stuff

Part Two: Feel free to panic

So, what now? The one thing I absolutely couldn't live without -- my insulin pump -- was dead. Without its steady stream of insulin, my blood sugars could not be controlled. I had emergency measures, injections for several days, but it would be impossible to avoid the peaks and valleys of the insulin's natural course, and if I didn't monitor my blood sugars every couple of hours around the clock, I could end up quite ill.

I already knew I wouldn’t be getting a replacement right away. I'd found out years ago that the manufacturer couldn't deliver directly to this island, and if they couldn’t deliver supplies, they couldn’t deliver a pump. The next best thing would be to have it waiting for me as soon as I walked in the door at home. Time to call and order a new one.

Easier said than done. An American phone can’t call a toll-free number from overseas, at least according to Verizon. There was no other means of contact on the website. Anywhere.

I am usually a very calm, laid-back person. I’ve dealt with so many medical issues that these sorts of situations rarely feel like crises. Even so, I began to feel an edge of anxiety in the back of my mind. (Deep breaths, deep breaths.)

I reached out to a couple of my providers, who answered within the hour (I love my providers.) One reached out to her personal contact at the medical supply company, who gave me a toll number. My first attempt didn’t work, so she reached out to the Help Desk by email. I waited a day for a reply that didn’t come. So I tried the toll number again.

Success! Once I reached them, they were happy to do as I requested, which was to deliver the replacement pump on Saturday, the day I would arrive home. The only thing was... it couldn’t go to the valet. The valet closed at 2:00 p.m. and I would not get home from the airport until at least 10:00 p.m. The customer service rep said that, though the package would be delivered by the most expensive service UPS had, there was no way to give the driver special instructions. She could waive the signature as long as I agreed to assume financial liability, but that was all. She suggested that I call UPS once they emailed me the tracking number.

OK. So UPS. But first I needed a tracking number. It took two calls and over 12 hours to find it, even though the manufacturer said they would email it. "Helpful" suggestions didn't pan out and no matter how many people I spoke to, even at the manufacturer, I couldn't seem to communicate the urgency of the order.

I gave up for the night, but my anxiety grew (Deep breaths, deep breaths.) since the delivery window was getting shorter. If I didn’t get it on Saturday, I would not get it until Tuesday because there was no Sunday delivery and Monday was a Federal holiday. Another two days at higher glucose levels was that much more time to end up really sick. Maybe hospital sick.

Unable to let it go for long, I called again when it was time to wake up for my 2:30 a.m. injection. The gentleman on the phone told me that special instructions for the driver were impossible on Saturdays, but I should call back at 7:00 a.m. and talk to a manager. I began to get angry. And frustrated. Anxiety edged toward panic. (Is there a wall I can bang my head against?)

But I made myself go back to sleep. I wanted to visit my favorite beach before I left.

I called again at the appointed time, and this representative told me that of course the driver would deliver the package to my door. I made it very clear that it wasn’t to go to the valet. She repeated it back to me twice. I began to relax. I would get the pump as soon as possible.

I packed. I went to the beach. I arrived at the airport with more than enough time to get my bags on board. We had lunch, one last taste of the island. Then I checked my email. There was a message saying a package had arrived at the valet.

Oh, there it was – panic. I did the only thing I could think of. I called the front desk of my building and begged them to get the package from the valet before it closed, in about half an hour. Thankfully, the woman on duty knew me. She cleared it with her manager and stowed it behind the front desk.

I could breathe again.

Just one more thing . . .

It was Murphy's Law and the straw that almost broke the camel's back all rolled into one. On the flight back, a delay almost caused us to miss the connection through security and customs. I felt panic sit down next to me again. I was so close. I confess, I had a minor meltdown. It was a good thing I was with friends who had known me for decades, so they could handle me cranky and upset.

I can’t tell you how relieved I was when I buckled my seatbelt on that last leg.

I took a deep breath.

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.