I remember the first time I got really sick. We were in Mexico for my best friends wedding. I hadn’t really been feeling well all week, but I attributed that to foreign food and more alcohol consumption than normal. The day of the wedding I felt a soon to be familiar turn of the stomach and made it just out of the gazebo to be sick in the bushes. I hadn’t been drinking that day but thought maybe I was coming down with something. I was trying to pull myself together so I could make a speech. One of the resort staff came over to see if I was okay, and handed me a napkin. I felt awful.

Over the next couple of months I was having a lot of trouble keeping anything down. I would go to the emergency room, and they would do their tests, come back with inconclusive results, and then send me home with Percocet. When I say that I couldn’t keep anything down, I mean I really couldn’t keep anything down. There were some days I didn’t eat more than a few soda crackers. I was weak, frail and I had lost close to 30 pounds. Now let me tell you something. I had a harder time with my body image at my smallest size than I did at my biggest. I couldn’t look at my own face in the mirror; my eyes and cheeks were hollow.

It wasn’t until months of feeling like this, and now addicted to Percocet, that I demanded more answers. I’m not leaving until you tell me what’s wrong with me. I will no longer accept your narcotics. I can’t live like this.

This story wouldn’t be complete without our favourite Percocet memory. I will add that addition to narcotics is not a laughing matter. It is serious and there is help available if you or someone you love is addicted to any drugs. I feel comfortable telling this story because my love affair with Percocet was short, and as soon as I realized I was addicted, as in taking it to sleep instead of for pain, I stopped. So anyways, the story. I had taken the day off work to go to a doctors appointment. My mom was picking me up, and when she came to the door to get me I grabbed my purse and put on my shoes. Then:

Mom: Are you ready to go?

Me: Yep

Mom: Are you sure?

Me: Yep

Mom: Are you going to put on some pants?

Me: *Looks down* Yep.

Anyways, back to our story. That’s when I was diagnosed with Gastroparesis. Gastroparesis is a form of neuropathy. It basically paralyses the muscles in your stomach that allow your food to move past your stomach. It would take me sometimes up to 24 hours to digest what I ate. When I was sick it was because I literally couldn’t fit anything else in my stomach.

The test for Gastroparesis would make anyone nauseous. They made me, someone who hadn’t kept anything down in months, eat radioactive eggs (SO GROSS), and then they would take pictures at certain intervals to see how much you had digested. I can’t recall the actual times, but at the time when a normal person would have fully digested their meal I had only digested 8% of my food.

I’m happy to report that since starting medication for this in 2015, I have had only one flare up that required hospitalization. The pills work very well, and I sometimes forget I even have it. I am in an online support group for others with this disease and sometimes it makes me so sad. I feel like I have a very mild version of the disease compared to others that may not have been able to eat solid food for years.

That’s complication #1.

At the same time that all that was going on, I had begun to lose my eye sight. Things were blurry. VERY blurry. I had a very weak prescription pair of glasses that I wore periodically. It got so bad that I actually felt very uncomfortable driving, I couldn’t see what was happening on the TV and the Christmas tree lights were all running together in blurry orbs of colour. I had trouble adjusting when moving between light and dark spaces.

When I went to get my prescription changed my optometrist told me she couldn’t help me. What do you mean? Just give me some stronger glasses! Well, it was a little more complicated than that. She told me that she suspected I had Diabetic Macular Edema. It’s swelling of the small blood vessels at the back of your eye. That old familiar wave of panic rushed over me. I can’t be blind, I mean, that would be completely life altering!

So I got my referral to the ophthalmologist. I wasn’t quite ready for the whole process. I was still nauseous all the time. They had to take pictures using contrast dye, that made me throw up immediately (I still think Tim Hortons should refund me for the coffee I lost). Thankfully that was the only time they had to use that dye. I’m already feeling awful, and also terrified that I may not get my vision back. When I first started getting treated, I had to go every 4 weeks. (Readers discretion is advised for this next part). The treatment is a needle that injects a drug into the back of your eyeball. It messes up my eyes usually for the rest of the day but I remember waking up in the morning after the first treatment. The sight of the tiny Christmas light bulbs almost brought tears to my eyes.

I was and still am so grateful for this technology. I wouldn’t say I’m in love with having to get needles in my eyes, but the benefits by far outweigh the horror of the procedure. I am also happy to report that after 4 years of treatments I have graduated to treatments every 12 weeks.

That is complication #2.

Those things now don’t affect me as much as they used to. I would say all things considered I am pretty healthy and so grateful for modern medicine. It’s incredible the things that we have that keep me living a normal life. I don’t miss the days of not being able to eat or see. I honestly thought that was going to be the worst of it. Ok universe, I get it. I should have taken better care of myself. You can stop now… but it didn’t.

I have a very vivid memory of the first time I realized just how much weight I had gained since I started the second golden year. I was doing really good! My blood sugar numbers were somewhat stable. I wasn’t exactly eating the healthiest but I was accounting for what I ate and feeling good. I joked about having to shop at the big girl store, but didn’t realize how big I had become. I was bent over putting lotion on my leg when I got really up close and personal with my thigh. When did that get so big? I started investigating what used to be the tiny body of an irresponsible diabetic. My little belly roll had become a lot bigger. I looked in the mirror; my face was a lot more round. Who was this person? I decided to buy a scale and when I brought it home I was certainly not prepared for what it told me. I cried. What the hell?

That was the day I decided that something had to change. I had a few friends that were into fitness, and I asked their advice. I starting making healthy nutrition choices and exercising at the gym in my condo building. A friend of mine told me about a boot camp his friend was looking to start up. My mom and I started going together. Once on his program I started seeing results quite quickly and I felt great. I had to reassess my diabetes management at this point as exercise burns off your blood sugar naturally (don’t get me wrong, insulin in still required, just less of it). I had to come to boot camp with back up sugars, and bring a healthy snack for after we were done.

So I was losing weight, eating healthy and feeling great, but there was one problem. I was having an insane amount of lows. They happened hours after I had finished exercising, usually in the early hours of the morning. I would wake up drenched, and searching for anything with sugar in it. The fear of those lows kept me from sleeping for months, maybe even years. I had really bad anxiety about falling asleep and not waking up. I would let my blood sugar go a little higher before bed so that I could sleep. I tried everything to help me sleep: no caffeine after 9am, melatonin before bed, reduced screen time, reading. Nothing worked. Over the course of 3 years I lost 50 lbs. It was a lot of hard work at the gym, and meal prep and a little bit of elevated blood sugar. I didn’t consciously factor that in and I was still trying to keep my sugars at a reasonable level.

At this time in my life, I had just moved and started a new relationship. I got busier with life and started getting the gym less. Because I had reduced my insulin for how much I was working out before, I had some trouble with my blood sugar again when I was exercising less. They aren’t excuses, and I hold myself fully accountable for falling off the wagon again. I just feel like it’s important to talk about the anxiety of dealing with diabetes, and how easy it is to fall off for any reason. The good news is that through a series of events, my 8 year old step-daughter came to live with us and suddenly it wasn’t just about me anymore. I had other people that relied on me, and needed me to take care of myself so that I could take care of them. I was able to get back on track before another hospital stay. We started eating more regularly, more home cooked meals, and going to bed at a reasonable time.

I recently met with a new therapist through the diabetes education clinic, who showed me a time line of my lab work over the last 10 years or so. I had long periods of missed appointments and blood work, and then suddenly in 2014 it showed a dot every 3 months indicating I had done my lab work and went to my doctors appointments, I felt relieved, and was proud of myself for getting back on track all on my own. I remember waking up one morning and thinking I had to get my life together. So I just did it.

So again I ask, how did we get here to this blog? What does this have to do with Kari’s Kidney? Remember when I said to make as many good choices as you can? Even if you mess it up, just get back up and keep on trying? It’s a lesson I learned too late in life, and all of those ugly years caught up to me at the end of 2014. I will not beat myself up about how I got here. I want to share my sick years and how they’ve helped shape me into the woman I am today.

Now back to our story.

I was fresh out of the hospital from my DKA and headed home to sleep in my own bed. Nothing feels better than your own bed after you’ve stayed overnight in the hospital (or in the case of the kidney transplant gone awry – 87 nights). I felt like a brand new woman. My head was clear and I was determined to get this Diabetes thing right this time.

This time, I would have perfect blood sugar all the time. This time when I told my mom that my blood sugar was 7, I wouldn’t be lying. I carefully calculated all my food intake, checked my blood sugar regularly and took all of my insulin. At that time I still felt like I had to have “good” numbers all the time to have control of my disease. To me, a “bad” number meant that I had done something wrong and the guilt would consume me. I was terrified to let my control slip away again. I know now that while perfect blood sugar is ideal, it’s not always feasible. There are too many factors that affect blood sugar, and to be fair to all the diabetics out there, we’re only human. There is no such thing as a “bad” or a “good” blood sugar number. A blood sugar number is simply a piece of information. It helps us calculate how much insulin to give, or if we need a snack before we exercise, or before we go to bed. And sometimes (just sometimes) it gives us permission to have a sugar filled snack with no guilt. It’s a mindset that has taken me years to learn.

My first day back to work I made my regular stop at Tim Hortons, and ordered my regular order but with sweetener instead of sugar. When I arrived to work and took my first sip, I immediately tasted that there was regular sugar in my tea. I was angry. I needed all the help I could get in getting it right this time, and I didn’t need people messing up my order.

I was also gaining weight. It’s something that I had never factored in before, but it’s a big part of my diabetes journey. When I’m taking care of myself, and eating properly and maintaining an acceptable blood sugar level, I gain weight. This is due to the fact that my body is actually absorbing the nutrient I am eating. It has always seemed backwards to me that the healthier I ate, the more weight I’d gain. I wouldn’t say it was consciously the reason I fell off the wagon again, but it’s definitely a hard part of staying on track. It’s easy to say to someone that it’s okay to be a bit bigger, as long as you’re healthy and staying alive. But I was 24, and newly single again and mentally it’s difficult to not feel comfortable in your own body. Anyone who has known me personally over the last 20 years will probably have seen me at either end of about a 60 pound swing. It’s hard. Really hard.

I stayed on track much longer this time. I was still not comfortable discussing diabetes in depth with anyone and would still get angry if anyone asked if I was taking care of myself. It was no one’s business. My blood sugar wasn’t perfect but I was paying attention to what I ate, making more of my own meals mostly because then I knew what was in them. I was working full time, but not making very much money so it was sometimes hard to eat healthy but I was trying. So what happened next? I fell off the wagon again, but it was different this time. Diabetes is complex and there is a reason that mental health is a big part of living with a chronic illness. “The Ugly Years – Part 2” should shed some light on a subject I think might be more common than you think. Stay tuned!

The highs and lows of being a diabetic are two fold for me. There are the blood sugar numbers, of course. There are also the emotions, some of which I’ve already touched on in my previous posts. This post is about the numbers.

The first time I ever felt a low blood sugar, I was still in the hospital for my initial diagnosis. I remember waking up in the emergency room feeling like there was cold blood running through my veins. I was panicked and shaking. It was an unfamiliar feeling and I didn’t like it. It was the middle of the night, and I thought maybe I was just feeling paranoid so I didn’t call the nurse and just tried to fall back asleep (hindsight – silly move). When the nurse came in to check on me, she asked how I was feeling. I told her. She checked my blood sugar and sure enough, it was 3. It was the first time I realized how my life was going to change.

I’ve had many, many lows over the years. They always feel the same: panic. cold sweats, an overwhelming urge to eat everything in sight. I’m one of the lucky ones because I can feel my lows. Some diabetics have something called hypoglycemic unawareness, which means they can’t feel when their blood sugar is low. I can always feel it, even in the middle of the night. I’ve woken up drenched in sweat, stumbled to the kitchen and rummaged through the kitchen cabinets to find something to bring my sugar up. I sleep really deep after a low too, like I’ve just run a marathon, and I wake up in the morning to the carnage of wrappers and empty juice boxes.

I’m also lucky in that I’ve never actually passed out from a low. Low blood sugar can be very dangerous. If not treated in a timely fashion, it can lead to a diabetic coma or even death. I’ve been as close to passing out as having tunnel vision, but at that time I lived at home with my parents still and was able to holler for a snack (MA! Meatloaf!). I used to have a lot of anxiety about sleeping. I was always worried that I could have a low I didn’t feel and would just not wake up. It has cost me a lot of sleep over the last two decades but my control is much better now, and I am finally able to sleep. That fear of lows is also one of the reasons I would sometimes let my blood sugars run a little high.

The lows are much more urgent than when your blood sugar is high. A low can be life-threatening in a shorter amount of time. As you may have concluded from my last post, I have also had many, many highs. The highs make me very lethargic and cause extreme thirst and blurry vision. Over time, having blood thick with extra glucose can (and will) cause irreversible damage to any small blood vessels in your body. It can lead to things like nerve damage in your feet and eyes, and damage the filters in your kidneys. When the filters in your kidneys don’t work properly, all the toxins that are normally filtered out and voided remain in your blood stream. It will fast track you to an early grave.

I would also like to add a disclaimer that any of these complications can happen at any point in your diabetes journey. Tighter control greatly reduces your risk of complications, but it doesn’t eliminate the risk altogether.

Armed with this knowledge – why is it so hard to stay on track? I guess maybe thinking that it wouldn’t happen to me, the same way I thought that I couldn’t possibly have diabetes. I always thought maybe there would be time for me, time to get it together before I would see any complications. I was young and I wanted to be free to live my life. I will continue to write about the emotions that come with having a disease that you can never get away from, but I will say this: one thing I’ve learned about to help me through all of this, is the practice of gratitude. It has helped me through some of the darkest days, which I have yet to write about. They’re coming.

If you read my last post, you will have read about an irresponsible young lady playing with fire. Well, it did catch up to me in June 2007. The following story was one of the worst 24 hours of my life up until that point.

I woke up not really feeling well that Saturday. I had to work, and then had plans to see a band at a small bar in a small town with my now ex-boyfriend. I learned from a young age that if I was too sick to go to school then I was too sick to go out and play after school (or in this case, work). So I dragged myself to the office. I can’t really describe how I was feeling. Just not well. I had no appetite. I could feel my heartbeat throughout my whole body. I was so thirsty, but couldn’t stomach any liquids. I had a dull ache in my kidney region. My boss at the time was nice enough to let me do some easy work that day, but honestly I spent most of the day with my face on the cool surface of my desk. The only thing that seemed to ease the pain was Aleve (fast forward – not a kidney friendly drug).

I made it through my shift and headed out of town. When I arrived at my destination, we decided to walk over to the bar so we could have a few drinks and not have to worry about getting home. We stopped on our way to get a coffee, and something to spike it. The effects of that one drink hit me hard. The walk home was about 4 kms and I don’t know how I did it. I had no energy. My heart was beating so fast. I was sick the whole way. We somehow made it back, and it felt good to lay down. I was still sick, and tossed and turned all night.

In the morning I tried to eat an apple, but couldn’t stomach it. I was going to my parents house that day and on the 20 minute drive there I pulled over more than once to be sick. When I got there, my parents knew something was wrong. I told them I was hung over and needed to go lay down. I did not have a blood glucose monitor with me, so my parents went to get one for me. I tried to fall asleep, but still couldn’t get my heart to slow down. I started to hyperventilate. Ok, something was really wrong.

I made my way back upstairs. Through gasps of air – Dad? Mom? I think I need to go to the hospital. Off we went. I needed to be escorted to the car as I could barely walk.

Admitting nurse: what brings you in today?

Me: I’m having *gasp* trouble *gasp* breathing

Mom: And?

Me: oh, and my heart *gasp* is beating *gasp* really fast.

Mom: AND?

Me: I’ve been *gasp* throwing up *gasp* for the last *gasp* 24 hours

Admitting nurse: Is that it?

Me: I think *gasp* so.

Mom: YOU ARE A DIABETIC

Me: oh yes, I am *gasp* a diabetic.

We were brought into a room right away. To be honest, I don’t remember much else from that day. I felt ashamed. How could I let it get this bad? I couldn’t look my parents in the eye.

It’s called diabetic ketoacidosis or DKA. When your blood sugar is so high that it’s poisoning you. When your blood is thick with extra glucose, it affects all your small blood vessels. It’s how you lose feeling in your feet, and your vision gets blurry, and your kidneys stop filtering properly. It’s a terrible feeling and I am glad to say that was my only episode. I’ve read in my support groups that it happens to some people more frequently and it makes my heart ache. I spent only 2 nights in hospital, and left with a new prescription for my insulin and test strips, a new referral to my endocrinologist and my diabetes education nurse. I was going to do it right this time.

Let me tell you something that I’ve learned that applies to so many aspects of life. It’s never too late. It’s never too late to do the right thing. I would think to myself that I was such a “bad diabetic” yesterday (or this week, or this year), and there’s no point in even trying now. Today’s a write off. That is a horrible cycle that’s really hard to stop. If you’ve made some bad choices, don’t get discouraged. Make the next choice a good one. Keep on making as many of your choices as good as you can and it will get easier. You’ll see. This time for sure it will be different.

As promised, I will now tell you about the ugly years. This is not an easy topic to open up about. I had in my mind that I deserved to live my life free of the burden that is diabetes. I know now that by not taking care of myself I was actually letting my disease have the control. It’s a hard pill to swallow given the complications I’ve had over the last few years but it’s part of my journey and it’s important to me to tell my story truthfully.

After that first day that I forgot my insulin at home I didn’t immediately disregard my disease. That part took a little bit of practice. I got away with it once, and then twice and then maybe a few more times. When you gradually start ignoring life sustaining therapy you don’t really notice yourself feeling progressively ill. I had moved out of my parents house and assured them that I could handle this on my own.

But… I started falling asleep in lectures and not eating properly. I started skipping my long acting insulin (it’s a once a day injection that gives you your baseline dose, and then you dose a short acting insulin for meals). Without this dose my blood sugar would mostly spike and not react well to the short acting dose. I started cancelling or straight up skipping my doctors appointments, which really tells me that I knew what I was doing wasn’t good for me and I didn’t feel the need to be lectured about it. I used to just dread those appointments. I didn’t have a good relationship with my endocrinologist but a little self reflection has taught me that she was not the problem – it was my bad attitude. Perhaps the judgmental stare I thought I was getting from her was actually a reflection of my own judgement. I usually left her office in tears – knowing that I needed to do better. I vowed to remember to take my long acting insulin and to check my blood sugar every day. I would eat better, exercise and make better choices. This time it will be different.

I remember once sitting in her office. I can see myself sitting in the chair in the little patient room at the end of the hall. The same room I sat in the first time I met her, and the same room I still sit in today. It’s likely that I even sat defensively, leaned back with my arms crossed, ready for the fight that was about to happen. When she walked in, she sat down with her notebook the way she always does. She had my most recent blood work. What’s going on? I burst into tears. I know. I had conveniently “forgot” my blood glucose meter, so I wouldn’t have to face the disappointment. I know I need to do better. I know. She said it was hard to help someone who didn’t want to help themselves. I know.

It’s the same conversation I’ve had over and over again with my mom and dad. Are you taking your insulin? Yes mom. Are you checking your blood sugar? Yes mom. What is your blood sugar today? 7 – I would lie. Those who know me well know that I’m a terrible liar. I wasn’t fooling her – or anyone else. The truth was, I couldn’t remember the last time I had checked my blood sugar. You need to take care of yourself Kar. I know. Please make sure you have your glucose monitor and your insulin with you. I know. I’m 23 now and I can take care of myself. My mom suggested I join a support group and talk to other diabetics. I don’t want to know other diabetics. I just want to be normal.

The thing is that if I was going to do this right, it was going to be a big lifestyle change. I didn’t know at the time, but I couldn’t do it alone. Proper support has been the key to getting where I am today. I had ignored my disease for too many years. I was walking a dangerous path and it was eventually going to catch up to me. I hope it’s not too late.

The first year was hard. It was a lifestyle change not only for me, but for my family. We paid more attention to nutrition labels, and a food scale was added to our kitchen counter. In our pantry there was a brown paper lunch bag full of stolen single serving peanut butter packets to add protein to my low blood sugar snacks to keep it from spiking later on. We looked for sugar free snacks that tasted the most like their delicious and sweeter originals. I kept diligent blood glucose records for my doctor to analyze. I later learned that the only “bad” blood sugar number is the one you don’t check, but back then there was a lot of guilt about an out of range number. What did I do wrong? Why can’t I get this right? To manage a disease that has so many variables is mentally and emotionally draining – but that’s an entirely different subject for a later post.

So I think things were going pretty well. I started to gain back some healthy weight. I slept through the night. I could focus better; the mental haze was gone. My vision cleared up and I no longer required my glasses. That was a relief for me. The first week I wore my glasses I had a coworker tell me that I looked ridiculous in them, and that kind of stuck with me being an emotional and hormonal teenage girl. As an adult I feel sorry for people who feel the need to put other people down and I would have spent more time wondering what was going on in her life instead of internalizing her negative comment towards me.

I had a ton of support from my family. Sometimes for fun we all checked our blood sugar when I had to, and it made me feel that we were all in this together. We coined the phrase “I’m having a NORMAL” for my non-diabetic family members, as opposed to a low or a high for the diabetic. They took turns injecting my needle into the back of my arm for practice. Some who were brave enough even injected themselves with an empty insulin pen, just so I could prove that it didn’t hurt. We all became experts in carbohydrate math. One unit for every ten grams of carbs plus a possible correction dose of one for every two points I wanted my blood sugar to come down, take away a little if I’m exercising, add a little if I’m sick. Like I’ve mentioned, it’s not an exact science but we were doing pretty good.

I was in my first year of a bachelor of science degree at the University of Calgary. I was making new friends. I was hiding in the bathroom to discreetly give myself a needle. I could be found huddled with a study group in the library. I was packing extra juice boxes in my backpack in case of an emergency low and a lunch with the carbs written on the lid (thanks Mom). I checked every morning to make sure I had enough supplies to last me the day at school. I remember the first day I forgot my insulin at home. I sat down in MacEwan Hall, opened up my lunch and reached into my bag for my insulin. It wasn’t there. I checked again, taking everything else out of my bag but no sign of it. What was I going to do? I had two more classes to attend that afternoon. I couldn’t not eat my lunch, could I? If I skipped a dose, would my blood sugar spike and send me into a coma? I remember the cold rush of panic washing over me. What should I do? I chose that day to eat my lunch and hope for the best until I got home. And guess what? I made it. My blood sugar was slightly elevated, but I felt fine. I vowed to never let that happen again. I need to always be prepared.

Looking back now, that day was the beginning of the ugly years (perhaps a fitting name for my next post). It was a mistake, yes, but I got away with it with no immediate consequences. I was flying high and still on top of the world. So how did I get here? To a place where I write a blog entitled “Kari’s Kidney.” I suppose “The Ugly Years” will have to be our next story.