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.

Adventures in Overseas Travel: Lesson One

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.

Oh, for the love of tape -- always overpack your medical supplies

The first time I went to the Caribbean, I was totally unprepared. The functionality of my medical equipment depends in large part on whether it actually sticks to my body. The problem with the Caribbean is that the humidity does its best to make sure that doesn’t happen. The breeze feels great, but doesn't really help with that. I had packed plenty of infusion sets (where an insulin pump sticks to you) for the week I was going to be there. That is, for normal usage. About an hour after I arrived, I realized that it might not be enough. By about half.

I started looking for my usual options. Waterproof sports tape (to replace the adhesive on the set) was first on my list. Surely everywhere had some equivalent of CVS. No. The drug stores on the island were tiny, like the old time mom and pop places that existed mainly to fill prescriptions, as opposed to selling convenience store supplies. They were also mostly closed, as it was Sunday. Even the ones that were open were closed for a few hours over the lunch hour. If they even had tape.

The second option was calling the medical supply company to see if they could deliver some extra supplies. But there was no outlet to do that on this island. It would take three days to deliver to San Juan, Puerto Rico, and then they would have to fly it over. I was only staying for a week, so scratch that.

There was no option three. Well, except $1,000 ticket home. I didn't have $1,000.

I am generally a pretty laid back person, even a fairly relaxed traveler. I have always been blessed with the ability to fall asleep on takeoff and wake up upon landing. That is, except when I run out of something medical. As soon as I realize it, I immediately feel backed into a corner. This time was no different. As the situation progressed, I began to feel more and more panicky. What would happen if I ran out of supplies halfway through? I wasn’t sure I had enough needles to spend a week on emergency measures.

In the end we returned to option one. We drove around and around the island until we found an open drug store, where the pharmacist had to help us figure out what was waterproof. Not how I would have preferred to spend my first hours ever on a tropical island.

The second visit to this island I brought plenty of tape and needles. I thought about what I had before and doubled it. Then doubled it again. Same with the infusion sets. Good thing, too, since I would need them all.

To be continued . . .

The Book of Love* Never Had A Chapter for This

*Monotones, 1958.

Note: This article was written for philly.com where it originally appeared on June 16th, 2017. 

Dating is hard enough without the extra baggage of a chronic or autoimmune condition. Since long-term relationships have always seemed beyond me, I’ve had my fair share of dating experience. It starts out the same way as everybody else. You get ready, distracted enough to keep your nervousness at bay. Checking blood sugars every few minutes to make sure the stress isn’t making them go haywire.

Wait. That’s not like everyone else? OK. Well, you just want to make sure they don’t go too high or too low while you are trying to get to know your date. Oh, don’t forget to take a look at the menu of wherever you’re going before you leave. You need to know what you can have if diet is a concern, and how much medication you will need to cover it. If you can do the estimation beforehand, you might be able to dose yourself without your date noticing. You keep your fingers crossed that you guessed right. You can always excuse yourself to take a blood sugar in the restroom, but you only want to do that once. Any more might seem a little weird. One more finger stick before you get out of the car.

Then you get there, that knot in your stomach eases, and you have a good time. Hopefully more than good.

Next round. You want to see them again. When do you tell them what you’ve got? How much do you tell them? How do you drop it casually, offhandedly? Because whenever you decide to tell – it’s such a pain to go to the restroom every time you need to check a blood sugar – it’s way too early to tell them how serious it really is, about how there will be times when your symptoms will keep you from seeing them. You might want the company, but you don’t want them to see you like that. Or that you have more doctors than any five of your colleagues put together.

You’ve gone out a few times and now you want to take them home. Using protection should be a given – the pill and condoms. Our immune systems hate us. We can’t afford to make mistakes. Ever. Does anyone really want to risk chronic or autoimmune symptoms imploding over a $1.50 condom, do you?

I also have the special challenge of being permanently attached to an insulin pump. I’ve found that guys don’t really care, but I am self-conscious about it. And where do you put it? I still don’t have a good answer for that, although attempting to find a good answer can lead to a certain kind of funny.

But the funniest part? It's all self-imposed. While I work myself up looking for the Book of Love, no guy I have ever dated blinked twice at my "big reveals." And yet, I do it every time. Just like every girl on the planet, but with that extra chapter.

Nothing Can We Call Our Own But Death

-- Richard II, Act III, scene 2

Thinking about death is hard, even for those of us who are a few steps closer than most, or maybe especially so. We recoil to consider the possibilities. Harder is discussing the death of someone close to you. Hardest is having the discussion when there is no time left to decide. Advance Directives can help alleviate this worst kind of stress. Even if you're not quite ready to consider the possibility of death, Advance Directives can be preparation for a surgical procedure as common as cataract surgery or even a "just in case" measure for people like me whose chronic and autoimmune conditions may cause temporary incapacitation. 

When I was 20, I didn’t know it, but I was taking a medication that artificially lowered my blood sugars. It resulted in the only times I ever passed out (two days in a row over the reading period my sophomore year of college). Not knowing there was a problem, I took the issue home with me for winter break. One day I had a low blood sugar and my mom wanted to administer Glucagon, which is the opposite of insulin and would bring me up to normal levels. I didn’t want it so I began to run in circles around the bottom floor of our house. My mom chased me for about 20 minutes. At some point, she must have caught up with me. In the middle of the den, she sat on my legs while my dad stabbed me in the thigh with the needle. He wasn’t gentle about it, either. She told me later that my teenage smartass disappeared for a few hours. It was the nicest I'd been in years.

The next day, the same thing happened. However, since there had been no time to refill the Glucagon prescription, they had to take me to a 24 hour urgent care office. It was raining and I went in one sock because I couldn’t find the other one. Or my shoes. When we got there, they wanted a full blood draw instead of a finger stick. I was always afraid of blood tests, and the nurse started slapping the tourniquet against her hand. It didn’t help. I said, and I quote, ”Get away from me with that thing.” And because I was over 18, they had to do exactly that.

My parents took me home and we just rode out the low. (This is when I found out how big a blood sugar range I have. The reading I took then was 19. Most people wouldn’t be conscious that low. When I’d first gone into the hospital at 14, it was 850. Normal is 80-120, or at least under 200.) It took a while. After that my mom swore never again, and she and my dad drafted a Durable Medical Power of Attorney so she could make decisions when I was not capable, as well as a Living Will because, well, it seemed like a good idea at the time. We never actually used them, but that's the Murphy's Law of peace of mind, isn't it? If you have it, you won't need it, but if you don't you will.

The Paperwork

When you hear people talking about Advance Directives, they are usually referring to a Living Will alone or a Living Will combined with a Durable Medical Power of Attorney.

The easier of the two is the Durable Medical Power of Attorney. This document designates someone to make decisions about your health in case you can't due to physical or mental incapacity. There are only a couple of steps to this one.

1.       Pick someone you trust and who knows you well. This is usually a family member, but sometimes if you are not close to your family or you think they will have trouble doing what you ask, choose a friend. (Not someone who is part of your provider network.) Also think about an alternate in case your proxy isn’t available in an emergency.

2.       Have conversations with your chosen proxy(ies). Make sure they have heard your choices from your own lips and you get a sense of whether they will be able to do as you ask even if other parties disagree.

Then there is the Living Will. This is a sensitive, grueling topic. If I let myself dwell on it, it can bring on panic attacks -- full blown, can't breathe, eyes watering panic attacks. Try dealing with that in Washington, DC traffic. Making these decisions before you need to will spare you the influence of undue stress and overwhelming emotions. A Living Will can be a complicated and nuanced document. If possible, include a trusted provider in your process to help you interpret impacts you may not understand.

There are many places you can find a standard form, but I encourage you to expand on those. Making these decisions before you need to will save you the influence of undue stress and overwhelming emotions. You will be able to consider all the options thoughtfully and deliberately. A Living Will can be a much more complicated and nuanced document.

1.       Do Not Resuscitate (DNR) Order: Do you want CPR performed if your heart stops?

2.       Ventilator: Do you want a machine to keep you breathing if you can’t on your own?

3.       Feeding Tube: Do you want intravenous (IV) nutrients if you can’t eat?

4.       Dialysis: Do you want a machine to clean and filter your blood if your kidneys can’t?

5.       Antibiotics/Antivirals: Do you want doctors to treat infections aggressively if you are at the end of your life?

6.       Palliative Care: Do you want to be treated only for pain and discomfort? (This one is usually specifically for end-of-life care. It’s what my mom wanted when her cancer could no longer be treated.)

7.       Tissue/Organ/Body Donation: Do you want to donate your tissue or organs to those in need of a transplant, and/or your body to science?

Advance Directives are legal documents, so they need be witnessed and notarized in some states. You may also want to consider a Physician Orders for Life-Sustaining Treatment (POLST) form, which is posted near a patient in the hospital. These documents should be revisited after every major life event --  marriage, kids, retirement, etc. – and annually as you get older or the status of your condition gets past a certain point.

The Health Care Decisions Act and the Uniform Rights of the Terminally Ill Act protect the decisions you lay out in your Advance Directive.

I know it's depressing. I don't want to deal with it, either. I haven't actually updated my documents since I was 20, which is bad since my proxy is no longer available. But the alternative is letting someone else decide for us. We exert little enough control over bodies that don't work properly. Do we want to cede even a little of the control we do have? I know I don't.

First Down and 9*

*For those of you unfamiliar with American football, when a team gets the ball, they have four chances (downs) to move forward 10 yards. I have gained one yard in my first chance. Still have nine to go.

A few weeks ago, I wrote about how I’ve been struggling to get back to the routine I want, the one that, if I follow it, will lead to optimal health. (It’s only been a year since I was at the top of my game.) In the six weeks since that article, I have sporadically been following the plan I laid out for myself --simply re-starting my exercise routine and going to sleep on time -- but only sporadically. Definitely running backward a bit. My goals now are basically the same, but I have arranged things to give myself every advantage, as opposed to struggling against logistics that sometimes work against me.

First, I asked for flex time from my employer. This falls under the category of “reasonable accommodation,” something that we are legally entitled to under the Americans with Disabilities Act. Because of my bouncing blood sugars, I was having real trouble exercising before work. I was either too high or too low or too tired (because of the too high/low), and would have to treat myself before I could run. That took time I didn’t have. So, I asked to start coming in to work at 6:00 or 6:30 since I was up anyway, and leaving at 2:30. This allows the commute time to be my treatment time, and I would be ready to get going as soon as I got home. I had to get it in sometime. Lack of exercise is one of two primary reasons my blood sugars are bouncing. It took a while due to the red tape provided by my company’s disabilities office, but my request was granted. (NOTE: Disabilities offices are there for your protection and your company’s. They are your official advocate in the workplace. Just because I don’t have the patience to deal with it doesn’t mean they don’t serve a useful purpose.)

Second, I elaborated on and expanded my goals. Slightly. Sleep on time is coming easily as exercise is wearing me out. But there are a few components to exercise. My new weekly tracker has four things on it: number of days my blood sugar stays under 200, number of days I do cardio, number of days I do weights, and number of days I hit my meal plan target. I am ignoring the latter for right now and the first one will come easily with the cardio and weights, so it’s only a little tiny bit more than before, mainly more frequent blood sugar monitoring.

Third, I enlisted friends to help. I know we are “supposed” to do these things for ourselves. To find the motivation within. The theory is that if we depend on external motivation, we will falter when it goes away. Maybe so. But there is a reason workout buddies increase the amount of exercise you do (there’s a study). Mine are not actually workout buddies per se, but they are checking in and I know I’m in trouble if there aren’t enough tick marks next to a goal.

But the hardest part? As my body adjusts, I will gain weight. It will take about two or three weeks for it to figure out that I'm not actually trying to starve it. If I want this plan to succeed, I have to make myself sit there and take it. Which I am, so far. 

All of this has led me to my first baby streak – three days of both cardio and weights/resistance training. I can already tell it’s going to exhaust me until I adjust, probably a couple of weeks, about the time I stop gaining weight. It’s a different exhaustion, though. Before it was sick exhaustion. Like when you have the flu. You’re kind of stewing in it. This is clean exhaustion that will send you to bed on time because you are actually tired and falling asleep.

Along those same lines, I confess I am proud of my baby streak, made up of just three baby steps, and that goes a long way. Right now, it’s solid. It feels like it will stick. I am a master of self-sabotage and an all-or-nothing kind of person, which is generally not healthy, but if it works in my favor here, I will take it. As I’ve said before, without a return to this plan, I will have nothing. You can walk around the world in baby steps, so yes, I will definitely take it.

Tip: Make it simple.

·        My tracker is a piece of paper tacked to a cork board. I’m keeping track with tick marks. You know, four little lines then one diagonally across for the fifth. Easy.

·        I also switched from a Fitbit to a Polar 10. Fitbit is great, but it allows my neuroses to run away with me – obsessing over every number in every category without focusing on the overall picture. The Polar is just a heart rate monitor that will keep track of calories burned during a workout. That’s all I really need to estimate what my intake should be.

Simple means something to me that it might not mean for you, so experiment to see what works for you while still giving you all the information you need/want.

Anchors, Aweigh

My mother was my anchor when I was growing up. She was the one I leaned on for nearly all of my emotional needs, for better or worse. Don’t get me wrong. My father was also very present in my life, but thankfully could not teach me anything about being a chronic patient. He was the booster and Mom was the safety net.

Mom had severe Crohn’s disease from the age of 12, although it was only diagnosed when she was 27. During the course of her condition, she went through four surgical intestinal resections, countless hospital stays, and some horrifically burdensome (then-)experimental drug treatments, like mercaptopurine (6-MP), a cancer drug which was just starting to be used to treat Crohn’s back then. She couldn’t have both a career and kids in her condition in the 1970s, so she chose us (me and my brother). Everyone should know what it feels like to be loved that much.

It was my mother who taught me how to exist with a chronic condition, even though I didn’t do very well for the first several years. She taught me the rules of hospital stays and that, if at all possible, you should never allow the drain of your symptoms to keep you from your day-to-day life. Do what you are going to do, and deal with a flare-up or a low blood sugar if the time comes. (This from someone for whom it was necessary to know the location of every clean restroom between our hometown and where my grandparents lived, some 600 miles.)

It's been 16 years since she died, and my anchor was cut out from under me. I floundered for a while, which is dangerous. Extreme emotions can have negative effects on diabetes, driving up blood sugars. In fact, stress -- including strong negative emotions -- can exacerbate symptoms of many chronic and autoimmune conditions, especially the ones in which parts of the body are inflamed. For my mother, stress could make her gastric issues almost as bad as eating the wrong thing, or make a flare-up worse.

Eventually, I had to choose. Sink or swim. Live or die. No one else was going to take care of the diabetes for me. So, I slowly allowed people in, something I do very badly. At first, it wasn’t on purpose. My family, of course, but friends who had weathered the storm with me, others who had gone through similar losses. Eventually, I distributed the weight of my emotional needs to enough anchors of varying sizes to feel my life stabilizing again. I still add anchors sometimes, with each new friend, and each new niece or nephew. Now if one fades or dies, there are enough to catch me before I go drifting out to sea.

Even so, this time of year is difficult. It varies, depending where I am in my head every May, but this year I’m struggling. I have done everything in my power to ignore the feelings I have, which is not healthy. I knew it wasn’t right and I let it take me anyway, that frantic need not to deal with it. I strategically blocked the commercials for flower bouquets, the promotions for spa treatments. It was weird. I heard them. I read them. But somehow, I never let them connect to my own mother. My way of refusing to acknowledge the hole that still exists. But ignoring it doesn't make it go away.

What I’m trying to say is that for all of you who struggle with the loss of a mother during this time of year, or a father (Father’s Day isn’t that far off), or anyone who was an anchor in your lives, it’s ok to let it come, the sadness. It feels like lying in wet sand at the edge of the ocean. Sometimes it, like the surf, eddies gently over me, and sometimes it crashes, blinding me, filling my nose, my ears, my mouth, until the rage of it is all that exists. But the only way over it is through it. It recedes eventually, as all tides do, and then you get up and walk away, exhausted and renewed.

There's Nothing Wrong With You (That Isn't Wrong With The Rest of Us)

So, did I mention that I’ve been in counseling since I was 16?

My mother had a degree in sociology, and was a big believer in mental health treatment. She realized that, whether I was diagnosed with a psychological condition or not, sometimes it was just good to have someone there to help you figure it out.

Back then, I was in the throes of diabetes non-compliance. I was struggling with the ‘why me?’ that every chronic and autoimmune patient goes through, especially after having survived meningitis. My monster was in a growth period as I ate whatever I wanted (maybe 5,000 calories/day) and purposely didn’t take the insulin I needed to break down the food. I also faked blood sugar readings on my meter. It was a very dangerous place to be, but I had to be the one to pull myself out. There was only so much she could do.

I needed professional help. The first therapist I had was nice enough, but he believed me when I lied – I’d perfected the art – and so, he was ineffective. I only went a year in college before major complications began surfacing. The first round was retinopathy (eyes) and neuropathy (nerve damage commonly called “diabetic nerve pain” in commercials). I was scared straight, and in an effort to help keep me there, the Joslin Clinic – the world’s gold standard for diabetes -- recommended a psychiatrist close to my college. I remember that the college supplied a van to take me to and from appointments. This one was good. Very good. It was in his office that I began to discover how my own brain worked.

After college, my mother was sick, terminal actually. After living most of her life with serious Crohn’s disease, she was going to die of pancreatic cancer. Under the circumstances, I thought it would be better if I continued counseling, but I’d moved away from my college town, so I started going to the first therapist I found that had the right background. It wasn’t what I needed – the therapist and I didn’t mesh well – but I didn’t have the time or energy to go looking for a better fit.

As an aside:the relationship between a patient and their counselor or therapist is a bit trickier than the one with their physician. With your physician, personality is important, but there are not many methods. Approaches to your condition, yes, but not methods. If the method your therapist uses is not right for you, it is hard to build the trust essential to dig into your psyche.

After my mother died, I called the Joslin Clinic. They had connected me so well the last time. They didn’t let me down this time, either. I knew in the first visit that it was going to be a good partnership. My first clue was that, when she asked me why I was there, and I said because of some issues around the diabetes. She called me out. She told me that I was using the diabetes as an excuse, that I was really there because of a lot more than that. I was taken aback for a minute. Thought about it. Realized she was right. A good start.

But it was the good end that sealed it for me. She told me that if I didn’t feel the appointments were working for me, she would help me find someone who worked better for me. And that was it. It’s been 16 years, and I know myself so much better than I did then. It’s a gift – to understand the motives behind my own behavior and be mindful enough to be the seat of my own power. Well, mostly, anyway. I – we – still have work to do.

But that’s me. My issues pale in comparison to the dire straits some of my friends have struggled with. I am close to people who have depression, thoughts of suicide, post-traumatic stress disorder (PTSD), bipolar disorder, and more.

I was listening to a sermon last year in the synagogue I attend sometimes, and the rabbi spoke about the unreasonable stigma that still surrounds mental illness. There is a section of the service that allows us to speak aloud the names of the sick we are praying for, but he pointed out that people rarely speak the names of the person who survived a suicide attempt, or announce to their friends that their kid just got out of rehab.

Why not? There’s as much to celebrate in someone successfully being treated for mental illness as there is in someone surviving a heart attack. They can be just as fatal if not treated properly. There is a chance of relapse with both. Both can be hereditary, though neither is contagious. And often both are caused by an imbalance in the body.

I can only speak directly to my own experiences, so I will ask: What is the difference between a chemical imbalance causing depression and my body deciding that it is its own enemy and attacking until part of that body (my pancreas) is dead?

If there is a difference, I don’t see it. I think that people who survive mental illness should be just as proud of their hard work as I am when I hit my stride on my regimen.

But what I think isn’t going to fix the stigma attached to mental illness. Because that is the issue, isn’t it? It’s an artifact left over from a time when we understood much less about how our brains work, back when we were afraid that mental illness reflected the patient’s character or morals or that we would be tarred with the same intolerant brush if we got too close.

We know better now, or we should. It’s up to all of us, patients and not, to educate ourselves, raise awareness, and make it known that we don’t see mental illness as any different from the more “accepted” chronic conditions.  May is Mental Health Awareness month, so it’s a perfect time to join the conversation.

Start here.

Broken-Field Running

Yesterday, I went to see my doctor for my quarterly check-in. Every time I go, I hold my breath until I hear three numbers: hemoglobin A1c (long term blood sugar average) for Type 1 diabetes, and creatinine (long term kidney function) and eGFR (short term kidney function) for chronic kidney disease. Those are the three that have to be in range for me to breathe easy.

This time it was like waiting for the axe to fall. I had been in tight control for years until a really bad work situation knocked me off my routine. The hours and commute were awful, with no flexibility, and I was told that it was a hostile work environment before I even started, but I didn't have a choice about taking a project. In the way of government contracting, I'd been without a project for too long, and I was in danger of being laid off (and losing my health insurance).

It was gradual, but I eventually dropped both my meal plan and exercise routine. Without this, I end up yo-yoing (blood sugar bounces out of control). This makes me tired, which makes me less active, feeds high blood sugar, you see how it goes. I’ve been struggling for over six months. That’s three rounds of blood tests. Every quarter, the monster that is my conditions grows another centimeter.

The kidney numbers have the biggest impact. A couple of years ago, my doctor actually upgraded me a stage of my kidney disease, from stage three to stage two (stage 1 is considered normal/healthy). I’d been convinced that I would need a transplant eventually, and I felt like I’d been given a reprieve from, well, something. It’s the deterioration of those numbers that scares me the most. When the doctor told me that my creatinine and eGFR were the same as last quarter, I thought I’d escaped serious consequences for another three months.

My subconscious knew better. I had been doing better, picking up more cardio and putting limits on my food intake. But, it wasn’t enough to make up for months of ignoring my regimen. I knew I was still out of control because I still felt out of control. I wasn’t surprised when my doctor told me that my A1c was just past the line that marks where you’re safe from complications. More like resigned. Maybe a little disappointed, or a lot disappointed. It had taken a lot of work to maintain my regimen. I had lost a considerable amount of progress, not just in following the regimen, but also in the execution of the regimen. I’d lost strength, energy, my appetite had grown, I’d gained weight.

I want so badly to get back to where I had been, but my motivation is dragging. It’s like having a second job. No, third, with the blog. And I’m just so tired. But without good diabetes control, I won’t be able to do everything I want to.

I know I can’t pick up where I left off. The pain in my shins tells me I will have to work up to my previous running speed. I expect there will be starts, stops, changes of direction, like broken-field running in football. You take the best path you can find, even if it's not a straight line. So I’m going to start small. Task 1: No more skipping cardio. Even if it’s walking, I have to move before work. Oddly, that starts with Task 2: going to sleep on time. (Sleep on time = awake on time = energy to exercise.) Two tasks is enough for now.

Each chronic or autoimmune condition comes with a different capacity for control. I’m pretty lucky. I can control many aspects of my conditions. Not all, but more than most, I think. And the better we get to know our conditions, the more we can exert whatever control we do have.

So, the question(s) of the week: how well do you know your monster? As well as you would like? Well enough to know what kind of control you can exercise? And when you do falter for a short time or a long time, how do you gain your feet again? Do you have a plan?