Tuesday, May 17, 2016

The Hardest Part

Note: This is day two of Diabetes Blog Week, and the topic is The Other Half of Diabetes: "We think a lot about the physical component of diabetes, but the mental component is just as significant. How does diabetes affect you or your loved one mentally or emotionally? How have you learned to deal with the mental aspect of the condition? Any tips, positive phrases, mantras, or ideas to share on getting out of a diabetes funk?"

Most people, when they think of Type 1 diabetes, think of the parts they can see. The needles, mostly. Finger pricks a dozen times a day. Insulin shots four to six times a day. Infusion sets every two or three days. Continuous glucose monitoring sensors every week. Blood draws every three months. For most, this is what they think of as the hardest part of diabetes.

But it's not the hardest part. Not even close.

The hardest part isn't the finger sticks, but what's contained in that tiny bead of blood that's squeezed out afterward. Despite all our best efforts, that tiny drop of blood could indicate an emergency that requires us to drop everything and act, and we have to be constantly vigilant for such an event.

The hardest part isn't the insulin injections or the infusion sets, but rather the medication that these devices deliver. We are grateful that it saves our lives each day, but also wary of the fact that, if we're not careful, that same medication can be lethal.

The hardest part isn't the continuous glucose monitor sensor, but rather the monetary price we've paid for the priviledge of accessing such technology. We're well aware that, were circumstances different, this same technology may be out of reach, and we're grateful for being able to wear it.

The hardest part isn't the blood draws every three months, but rather what those blood tests may reveal. We live with a worry that follows us like shadows, never quite leaving no matter how good our control is. Regardless of how hard we try, we may not escape complications in the end.

The hardest part about diabetes isn't anything that's visible. It's all the stuff that's invisible. It's the constant vigilance. It's the daily grind. It's the unending adjustments. It's the interrupted sleep. It's the financial burden. It's the unpredictability. It's the extreme highs and plummeting lows. It's worrying about the future. It's the utterly unrelenting, unforgiving, endless nature of diabetes.

I have no real answers, even after having lived with diabetes for nearly three-quarters of my life. It's mentally and emotionally hard. It will always be hard. I just try my best each day and take things one day at a time.

Monday, May 16, 2016

The Nature of Impossible

Note: I'm participating in Diabetes Blog Week for the second time. This is my post for Monday's theme, Message Monday: "Lets kick off the week by talking about why we are here, in the diabetes blog space. What is the most important diabetes awareness message to you? Why is that message important for you, and what are you trying to accomplish by sharing it on your blog?" My message is a little different from most other diabetes bloggers...

I crouch, shifting my position slightly as the sound of the ball bouncing over gravel grows nearer. Seconds later I feel the satisfying thud of the ball rolling into my glove. Picking it up with my other hand, I send it rolling back twoard my partner, a blur of colour several meters away against the dimming sky.

"Okay, everyone, time to come in!" comes the voice of the coach. We grab the rolling balls and crowd into a semicircle around him as he debriefs us and goes over the date of the next practice. "And," he adds at the end, "since we're going to become an official team, we need to think of a name. That's your homework for next week."

Kids disperse in the gradually approaching dusk, galloping up to parents to announce the exciting news. My dad appears by my side on the field, and together we wind our way through the group, my dad greeting parents and me yelling over my shoulder that I'll see classmates the next day. Reaching the sidewalk we turn left, heading to the parking spot he always uses.

"We have to think of a name," I exclaim as we walk. My dad touchs my shoulder briefly, steering me slightly to the left to make sure I avoid the jog in the sidewalk, nearly invisible in the deepening dusk. "Do you have any ideas?"

"I have one," my dad says, "but I'd like to hear yours first."

I look around me, at the deep blue-grey sky overhead, the sillhouetted darkness of trees, and the scattered lights of home windows and streetlights, appearing to me to float in the darkness. I had an idea.

"We'll say our idea together," I suggest. I pause and look up eagerly at his tall shadow that blocks out the grey of the warm, late-spring sky.

He agrees, and a moment later we say simultaneously: "Fireflies!"

That night seemed magical to me. I sat in the car on the way home brimming with excitement at the idea of sharing the name that we had both announced at the same moment, as if we had shared a thought. I thought of how, at the next practice with my classmates and friends, we would pick a name and become an official team, and I couldn't wait.

I didn't know that this would be my last softball practice, but it was. The official team formed never hearing the name that my dad and I had thought of, and I never practiced with my peers again. I don't remember what explanation my parents gave, but years later they told me that having a legally blind child on the team was a liability the organizers were not willing to accept.

My parents had seen me succeed at skating lessons, swimming lessons, downhill skiing, and gymnastics—sports where, when I wasn't wearing a "BLIND SKIER" vest or running head-long into a fellow player and breaking my nose, many observers didn't even realize that I had a visual impairment until they were told. Instead of simply accepting "no" as an answer, my dad called around to half a dozen Little League teams until he found a coach willing to work with him to have me included.

The entire team was made up of kids I didn't know, and it was baseball, not softball. I stood in the outfield for what felt like ages with my dad stationed nearby, simultaneously hoping the ball would be hit in my direction and dreading my dad's announcement that the hard, invisible object was hurtling through the air toward me. I had no idea which team was winning, though my dad tried to keep me up to date on what was happening during the inning. When our team was at bat I would stand and twine my fingers through the chain-link fence, peering out at a field I could barely see, and wait for my turn. When it came, I tried to hide my embarrassment when the coach let the pitcher from the opposing team stand at half distance, and pitch well beyond three strikes as I listened for shouts to "Swing now!" and mostly missed.

I decided that perhaps baseball was not the best sport for me, and quit after that first season.

I am grateful that my parents gave me the opportunity to play baseball, because they gave me the priviledge of making my own decision that baseball was not right for me, rather than making it for me. For people with disabilities, choices about what they can and can't do, what they can and can't access, and ultimately what they are and are not capable of is often taken out of their hands. At such a young age I decided that baseball wasn't for me because I didn't like it, not because I couldn't do it. The difference a change in those two beliefs could have made on my life is profound.

As a kid, I didn't really think of myself as having a disability. I never tried to hide my visual impairment, because I just didn't see myself as very different or as having anything to be embarrassed about. And my classmates and friends followed suit, adapting naturally to my visual impairment as just one aspect of who I was, not something to get worked up about or pass judgement over.

As I grew older, though, I realized that others were sometimes making judgements on me. In grade five, when all the kids got the opportunity to sign up for band if they wanted to, teachers advised that I shouldn't participate because I couldn't read sheet music. For years, I watched my brothers come home lugging saxephone and trumpet and listened with jealousy as they practiced. My parents signed me up for piano lessons instead, but the fact that I'd been denied band made me yearn for the experience.

With the protective shield of my family and friends surrounding me, I grew up having no idea that, to society, blindness meant darkness, fear, dependence, pity, and helplessness. As an adult, however, I was assaulted by these deeply-held, often subconscious attitudes in full force. And suddenly, people everywhere were trying to decide for me what I could and couldn't do: telling me I couldn't travel independently, couldn't take a course in university, couldn't succeed at a chosen career path, couldn't participate in certain sports, and couldn't use medical devices. If it wasn't stated directly, it was implied through comments and actions. It was as if, not having any idea how they personally would function without vision, people just assumed a task was impossible.

What would most sighted people think is impossible for a blind person to accomplish? Driving a car, perhaps. Or have careers as an oceonographer, meteorologist, software engineer, journalist, photographer, mathematics professor, politician, medical doctor, teacher, lawyer, or working at NASA? Or raising children who are fully sighted? What about flying a plane? Or climbing Mt. Everest? Or winning a national reality TV show?

Individuals who are blind have done all these things and more.  (The first person who is blind to climb Mt. Everest did so five years before the first person with Type 1 diabetes accomplished the same.) Yet, so many assume that it can't be done. Sure, some of these things such as flying a plane or driving a car are only possible with some assistance or with not-yet-available technology. But that's in large part because people who are sighted assumed that people who are blind wouldn't be able to drive, fly a plane, or do any number of other things. And in that assumption, they designed technology that is visually-dependent and inaccessible, which creates an artificial barrier. (What if the instruments on a plane gave audible or tactile instead of visual feedback? What if roads were designed with tactile paint to follow instead of visual lines and traffic tones instead of lights?)

The nature of impossible is often more about assumptions and attitudes than it is about reality.

It's not surprising that many people assume the many basic tasks are impossible for people with visual impairments to complete independently. Most people get all their education about blindness from movies or novels. Most fictional characters who are blind that I've seen stumble around having no idea of where they are or what's happening around them and struggle to function without assistance from others. No wonder people standing beside me waiting for a light to change can't fathom how I could cross that street independently. I can't count the number of times I've been grabbed without a word spoken in order to be "helped" across the street, down the stairs, or onto the bus simply because people assume I need help.

I was lucky. I grew up largely shielded from these stereotypes. Many kids who are blind aren't so lucky. They grow up surrounded by parents, teachers, and peers who pummel them with their misguided beliefs about what someone who is blind can and cannot do. And for a child who hasn't had the opportunity to discover their own abilities for themselves, they may come to internalize these beliefs. The same is true for the person who loses their vision as an adult, having spent their entire lives learning that blindness means darkness, fear, dependence, pity, and helplessness. No wonder it's scary.

And I want, more than anything, to change that message.

I want people, especially people who may face a visual impairment in the future, to know that blindness is not the end. It's not the end of enjoying hobbies. It's not the end of a productive career. It's not the end of raising a family. It's not the end of attending social events, or travelling the city, or going on a global tour, or making a scientific discovery that changes the world. Sure, it's not easy—most major, life-changing events aren't. But, even though stress and anger and tears may be part of the process, people do not need ot be so deeply frightened of something that doesn't need to be scary. There are ways of doing virtually everything that was once done visually without vision, including reading, using a computer, and getting around.

No one needs all that extra fear heaped on top of an already difficult adjustment process. Blindness is not the end of life, only the beginning of a new way of doing things.

Sunday, January 31, 2016

Autoimmune, Part Deux

Several months after I was diagnosed with Type 1 diabetes, I sat in our family doctor's office with my dad while she talked about having me get a blood test for something called celiac disease. Like diabetes mere months ago, I had no idea what this was, but the doctor explained that some kids with Type 1 also had this condition and couldn't eat certain foods like bread. As she stepped out of the room, I asked my dad what I'd eat if I couldn't eat bread. "They make potato bread," he replied.

"Potato bread?!" I exclaimed. "I wouldn't be able to eat that, either!"

"Oh, that's right," he chuckled as the doctor walked back into the room with the blood test form.

I didn't realize it at the time, but it was my first hint that often people with one autoimmune disease develop another (or several others). I learned that fact years later as I delved into reading online diabetes content.

Thankfully, I didn't have celiac disease when I was tested back in 1991, and I haven't developed it since. In fact, I've gone for over 20 years without developing another autoimmune condition, although my immune system has remained plenty overactive in the form of allergies and related conditions. Over the past year or two, these allergic conditions have clamoured for a spot that rivals diabetes in terms of their effect on my everyday life. I actually found myself getting a bit cocky. My immune system has been so focused on attacking the external world—maybe I won't be one of those people who develop multiple autoimmune conditions.

But then, sometime during the fall, things began to change.

I gradually began to feel tired. Exhausted, in fact. Getting up in the morning or running errands became great feats of willpower. I worked at getting my sleep schedule exactly right, as it had somehow become messed up with me being unable to fall asleep for hours or waking up restless and hungry and hot in the middle of the night. I worked on exercising as consistently as I could, which I'd stopped doing because I felt so tired all the time. I worked on eating better, because my stomach had been getting upset a lot lately. I worked on controlling my blood sugar better, since it seemed that my pump settings were suddenly all wrong and I was spending a lot of time battling highs. I worked on keeping my allergies under better control, thinking that those could be the cause of my tiredness as well as my eyes being in a constant state of (at times almost unbearable) irritation.

A small alarm bell went off in my head when I found my arm getting tired just lifting a one-litre carton of almond milk to pour. I called my GP and made an appointment. It was my first inkling that this wasn't normal tiredness. Around the same time I also noticed that my heart was pounding much of the time for no reason. One day I also found that my hands were trembling when I did things like cooked or unlocked a door, which raised my level of concern a notch farther but that I thought must be from my muscles being so ridiculously tired. And, as things approached the coming climax, I found myself feeling overheated and dizzy at times, but who wouldn't when their body acted as if cooking dinner was running a sprint?

Fortunately or unfortunately, I didn't make it to the appointment I'd scheduled with my doctor. One weekend, in the middle of sitting having a lengthy text conversation with a friend, my heart started to pound faster than it ever had before. I interrupted our conversation to tap out: I don't think it's normal for my heart rate to be 140+ while I'm just sitting here. :(

As my friend's alarmed return text popped onto the screen and my fitbit's readout climbed to 186 bpm before cutting out completely, I sensed that things may have reached a new level of severity. I tried lying down, and although that lowered my heart rate somewhat, it still beat far too fast. A text came through from my friend suggesting I go to a walk-in clinic. I called my parents to ask their opinion. They suggested the hospital. I decided to wait an hour to see what happened, but when nothing changed, my parents came to pick me up and together we headed for emergency.

Monitor displaying my vital signsUpon arriving at the hospital, they wouldn't even let me walk to the bed; I was immediately taken into the back in a wheelchair. In short succession I got hooked up to monitors, had a chest x-ray, got a bunch of blood drawn, had an ECG done, and had an IV inserted after only two failed attempts (not bad for me). I told them about how bad I'd been feeling lately, at least everything I could remember amid my mind's worried thoughts. A couple of hours later I had another ECG done and got more blood taken. And then I lay there for hours, alternatively talking to my parents and texting my friends and resting because even texting raised my heart rate and tired my arms out, wondering what was causing my body to go haywire. Emergency doctors and cardiologists came by and ran through some possibilities related to my heart, none of them sounding particularly good.

At some point after midnight my parents left to go get some sleep. And then, during the early hours of the morning, one of the doctors came by again to tell me that my blood test for TSH had come back so low that it was undetectable.

"Thyroid," I thought. I felt a jumble of emotions all at once. On one hand, this was probably the answer to why I'd been feeling so horrible, and I was positive that a thyroid problem was way better than a heart problem. On the other hand, I had no idea how an undetectable TSH level was treated. I also had a hunch that thyroid problems were autoimmune, and felt a flash of annoyance that my immune system had screwed up once again.

I stayed in the hospital until the following afternoon. During the night I was given a beta blocker to slow down my heart rate and lower my blood pressure. Not having my heart pounding as if I was exercising while lying still allowed me to sleep for a couple of hours. During the night and the next morning I was visited by a number of endocrinologists who ran through a list of symptoms. Obviously my heart rate was fast and my blood pressure was high, but had I been tired lately? Yes. Trembly? Yes. Upset stomach? Yes. Trouble sleeping? Yes. Hungry? Yes. Hot and sweaty? Yes. Irritated eyes? Yes. About the only symptom on their list I hadn't experienced was losing weight. And although they didn't ask about my blood sugar lately, I did learn that thyroid hormone affects almost every part of the body, including the speed at which food digests. That would probably explain my struggles with spikes and why it seemed as if all my pump settings were wrong.

The endocrinologists also explained what was going on. My thyroid was pumping out way too much hormone, which is why my TSH level was so low. I was given a medication to block my thyroid from making the hormones T3 and T4. The exact cause wasn't known yet but, as I suspected, they said the most likely cause was an autoimmune attack.

I texted my parents in the morning to let them know what was going on. My hospital breakfast was not terrible and, impressively, accommodated my multiple food allergies. (I'm not sure why I find this so impressive; perhaps because the last time I was in hospital my mom inspected the food as if she thought they were trying to kill me.) The doctors offered to keep me admitted for another day or two, but said it was safe to go home if I wanted that option. Of course I decided to go home, bringing with me two prescriptions, a form for lab work, and information about getting a few other tests done.

After I got home, I continued feeling awful for the next month. I used up a fair number of my work sick days, although luckily the Christmas break provided me some built-in recovery time (even though it's not great feeling sick over the holidays). Some complications happened in terms of medication—I found out when I saw my allergist that beta blockers can block asthma medications and epinephrine. Not good for someone with asthma and food allergies. So, I took as little as I possibly could with plans to stop as soon as I felt better (which had been the plan all along).

Finally, one morning more than a month after starting the thyroid-blocking medication, I woke up and actually felt awake and energetic. I went about my day and my heart wasn't pounding and I wasn't wanting to collapse into bed by early evening. It was such a relief. I didn't fully realize how awful I'd been feeling for months until I finally felt better. Once I felt better, my blood sugar also took a dramatic turn for the better.

I saw my regular endocrinologist last week, six or seven weeks after this whole ordeal happened. He had all the test results from the hospital, including the blood test they did to see if I had antibodies attacking my thyroid. Not surprisingly, the antibody test was positive, meaning I have Graves' disease. This is an autoimmune disease where antibodies attack the TSH receptors on the thyroid. Even though my body's TSH level went to zero, trying to tell my thyroid to quit making hormones, my thyroid thinks that it's constantly being told to pump out more hormones because it's being stimulated by the attacking TSH receptor antibodies.

By the time I saw my endocrinoloigst my T3 and T4 levels were one-half to one-third what they had been at the hospital and were in the normal range. My TSH level, though, was still near zero. And so the plan that my endocrinologist outlined is to stay on the thyroid-blocking medication, get thyroid levels checked every six weeks so that he can adjust the dose as needed, and then continue the medication for a year or two. Some percentage of people are able to stop taking the medication after one or two years because their immune system stops producing antibodies, but many aren't. So, if I'm still needing thyroid-blocking medication in a year or two, we can talk about other options. Other options being destroying my thyroid, which doesn't sound appealing to me. Either way, there will be medication for life (either thyroid-blocking medication or thyroid replacement medication), unless I'm in the lucky group that has the thyroid antibodies disappear.

This entire diagnosis shocked me and caught me completely off guard; partly, I'm sure, because of the drama of being diagnosed. Like diabetes, it was a disease I'd not really heard of coming completely out of the blue. And, just like diabetes more than two decades ago, the symptoms were all there, I just had no idea that they were all connected to my thyroid going into overdrive. I've read a lot about hypothyroidism and diabetes, but nothing about hyperthyroidism and diabetes. They are both caused by an autoimmune attack on the thyroid but involve different antibodies.

On the plus side, managing this disease (at least so far) has consisted of taking two little pills a day. There are still some days here and there where I feel bad, but they aren't often, and the daily management of this disease doesn't even compare to diabetes or allergies. I'm not even two months in and I already feel like I've reached an acceptance stage.

Although ... it is perhaps a bit sad that I already find myself half wondering what innocent bystander my immune system might decide to target next.