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?

So, Why Yet Another Blog? And Why This Blog?

Because if you have an autoimmune or chronic condition, the likelihood is that I have been where you are. 

When you were diagnosed, were you scared? Bewildered? Confused? Angry? Numb? Did you feel helpless or stupid? I was too young to understand completely, but I remember clearly how angry I was. Very angry. Furious. I didn't know then that it was a defense to cover helplessness. It was so big. DIABETES (it always seemed weird that it's never capitalized in print). I didn't know what it was, how it worked, or what it meant for the rest of my life. Everything was changing. I thought, what do I do now?

There was other stuff, too -- subconscious stuff. I didn't realize it until recently, but I also felt a deep sense of betrayal. It makes sense. What's worse than when you betray yourself? And what else can you call it when your body turns on you and literally attacks itself? You are supposed to be able to trust yourself more than anyone else on the planet, right? But you can't. Nothing works like it's supposed to anymore. 

My situation was made even worse by the fact that I thought I had already paid my medical "dues." You know those commercials for the meningitis vaccine? I had that. Eight years before my diabetes diagnosis, I got B strep meningitis. I was the only kid who survived it that year, and even then I ended up in a wheelchair for 18 months. It was only through my family's support and sacrifices that I won that vicious, ugly war.

It was a real slap in the face to realize that wasn’t the end of it, that instead of winning a war, it had just been the opening salvo, a mere battle in a conflict that would last the length of my life.

Decades later, it makes me sad sometimes to think about who I might have been if I had been healthy. Then I think about how far I've come. Yes, my conditions (I have several now) are hard. Inconvenient. Time-consuming. But I like the life I have and the person I have become. I am proud of the strength that came from the crucible of my medical issues. I am grateful for the relationships I have, every one of which is worthwhile and valuable (you tend not to waste time on superficiality when your time and energy are limited). And maybe, just maybe, I have learned enough to trust myself again.

So, why this blog? I want to use my experience and contacts to arm you with the tools you will need to navigate both your condition and our ridiculously complicated healthcare system. I figure that if I can help just one person avoid my mistakes or come through the low points better than I did, I can consider this a successful venture.

The Challenges of an Invisible Condition

Most of the people reading this blog have conditions that are invisible. If I had a nickel every time I heard, “you don’t look sick,” I wouldn’t be driving a teenage Honda. I am always pleased to hear it, as it is a testimony to my good control, at least most of the time.

But, no matter how “normal” I look to others, the fact is that I have a lot more mandatory work to do to live every day than the average human being. For example, I can’t just skip a meal when I’m not hungry. I have to either alter my insulin or make adjustments so my body doesn’t get mad at me (yes, sometimes I think of my physical self as a separate entity with its own agenda, especially when I have blood drawn and my veins run away, like they’re playing hide and seek). This might not matter most days, but when it does, it REALLY does.

How do you explain to a boss that no, you don’t have a fever, and yes, you are probably functional enough to work from home, but you can’t come into work today because you have to deal with the side effects of your condition? I do not like to be around people if I just can’t get my blood sugar down. It’s a very vulnerable place to be. I feel like crap and I am scared because I can’t figure out what’s going on. Also, I like the people I work with, but not enough to let them into that particular corner of my life. If nothing else, it would totally undermine their view of me as a competent co-worker.

Or how do you handle the looks you get if you park in a handicapped parking space, but you don’t look handicapped? The world has a lot of righteous judgment for people they’ve never met.

Then there are the times, especially if you are seeing a provider who doesn’t know you well, when you feel like you have to justify the reason for your visit. I remember going to see my GP—who does know me well—for a sore throat that had lasted upwards of three weeks before I went to see him. I’d been checking my temperature and it didn’t seem like I had much of one, especially since I tend to run about a point lower than average, so 98.6 is actually high, more like 99.6. When he checked my throat, I told him I wished I’d come earlier in the day because it didn’t hurt in the afternoons as much as it did in the mornings, and I assumed the inflammation would be more visible. He told me I didn’t have to justify myself, that he  believed that I had what I said I did. I think I almost cried, which is not something I do publicly. Ever.

I have always coped by leading with my chin—thick skin, don’t care what others think, defensiveness as an end in itself. This is not a position I would recommend. It can be very isolating. To give you an idea, the people who are closest to me aren’t there because I invited them in; they are there because they thought I was worth the effort of pushing past that rough exterior. They have stuck with me through a lot, and I will never be able to express how grateful I am for their friendship.

I think... I think that the healthiest way to cope is to accept that everyone has their own version of normal. You can share as much or as little as you are comfortable with. But without your health, you have nothing. Don’t push yourself so hard that it affects your condition. Accept help from the people who love you. Teach them how. They are your safety net. And know that there are going to be days when you have to put yourself first. This is not something to be ashamed of, it just is.

How did Henry David Thoreau put it? “I went to the woods because I wished to live deliberately, to front only the essential facts of life, and see if I could not learn what it had to teach, and not, when I came to die, discover that I had not lived. I did not wish to live what was not life, living is so dear; nor did I wish to practise resignation, unless it was quite necessary. I wanted to live deep and suck out all the marrow of life, to live so sturdily and Spartan-like as to put to rout all that was not life, to cut a broad swath and shave close, to drive life into a corner, and reduce it to its lowest terms...”[1]

 It’s hard to hear, but our lives are limited. Do what you need to do to get as much as you can out of what you have.

[1] http://www.goodreads.com/quotes/2690-i-went-to-the-woods-because-i-wished-to-live