#WhyIWalk – NickyNick & Co.

Could you imagine living with a condition that if not treated properly could lead to a shortened life?  It all started on Easter break in Myrtle Beach, South Carolina.  The week was full of good times like late night mini golf and relaxing days on the beach.  There was just one thing that was off about me, I felt like I wasn’t myself anymore.  It was as if there was something inside of me that was just diminishing my happiness.  My focus was off, I was losing weight that couldn’t be gained back, and I became so sensitive.  Every second of the day I was thirsty, and every other second I was in the bathroom.  A question aroused in my mind, “What is happening to me?”

Later in the week, nothing had changed but the approach my parents took on handling this.  My dad figured that if I stopped drinking, I would stop using the bathroom so often.  I agreed to his approach and I did attempt to stop drinking.  Even though I was limited on the amount of drinks I was able to have, I was still using the bathroom way more than normal.  There was a time where my parents were on the beach and I was still in the room with one of my brothers.  In my head I was telling myself that I needed something to drink, but in reality I had already drank what my parents limited me to. My brother stepped into the bathroom and as soon as he shut the door I bolted towards the fridge.  I swung open the refrigerator door and I grabbed the first drink I saw; it was a cold gallon of 2% milk.  I started to chug it as fast as I could out of the container.  Paying no attention to the brain freeze that was going on, I found myself drinking almost half the gallon of milk.  My brother came out of the bathroom and I quickly put the milk back in the fridge.  I then proceeded to use the bathroom and later decided to go to the beach where the rest of my family was.  When we got to the beach a few minutes later, I used the bathroom again.  Wherever I went I had to know where the nearest bathroom was and if the restaurant had free refills.  I stopped questioning myself and finally told myself that there was something wrong with me.

Twelve hours from South Carolina my family arrived home in Queens, New York.  I will never forget the nightmare I had that night.  In my nightmare I was in desperate need to find a bathroom.  When I finally found one, I proceeded to use it.  The only thing wrong about that nightmare was that I woke up in a puddle of what was supposed to be in the bathroom in my dream.  It was very embarrassing that I was nine years old and had wet the bed.  Now I look back on it and just laugh.  The next day was school, I was nervous because I didn’t know what my body was going to do to me.  I asked my teacher for permission to use the restroom, but as soon as I got back I had to go again.  I began trying to figure out how I could sneak out of the classroom and sneak back in so I didn’t have to ask my teacher again.  It was one of the longest days of my life and a huge relief to finally be home.

My mom had scheduled a doctors appointment for me.  Little did I know, my life was going to change drastically that day.  I told my doctor my symptoms and he immediately knew what the problem was as soon as I finished speaking.  He asked me to step outside of the room for a while.  When I began to snoop around I saw my mom in tears on the phone speaking to whom I later found out was my dad.  No little boy wants to see their mother cry, especially if it’s about you.  At that moment, I knew something was wrong.  My mom, the strongest woman I know walked towards me and said, “Nick, we have to go to the hospital. Everything is going to be okay.” I thought if everything is going to be okay, then why was I going to the hospital?

I arrived at the hospital and was immediately put on a hospital bed.  I remember the sight of blood shooting out of my arm because my IV was not installed properly.  I wish I can remember more of that day, but I think my brain just decided to forget about it.  It’s probably for the better.

Waking up the next morning finding myself still in a hospital bed not knowing what was wrong with me still scared me.  A doctor had walked into my room and broke the news to me, he told me that I was diagnosed with type 1 diabetes.  I said to myself, Type 1 what? I had no idea what diabetes was or how it was going to affect me.  I was told that I would have to prick my finger several times a day to check my blood glucose levels and would have to take a needle every time I ate.  My heart sank into my stomach and I asked god, “why me?” The doctor proceeded to tell me that all of the un-normal behavior that I was having was symptoms of diabetes.

Type 1 diabetes is diagnosed when someone’s pancreas stops producing the hormone insulin.  Insulin is a liquid substance produced in the pancreas that helps regulate blood glucose levels.  Since my pancreas no longer produced this hormone, I had to inject it into me through a needle.  When a person eats carbohydrates, their blood glucose level increases, insulin helps bring that blood glucose level back down.  When you exercise, your blood sugar levels go down and you need carbohydrates to raise it.  I picture it as the hardest see-saw in the world.  Along with insulin, comes side effects.  Too much insulin results in a low blood sugar.  Symptoms of that are shakiness, confusion, hunger and those good old mood swings.  Too little insulin results in a high blood sugar.  Symptoms of that are fatigue, thirstiness, frequent urination, confusion, and once again, mood swings.  Throughout my life, I have encountered all of these symptoms to the extreme.

When I left the hospital I was always being watched by someone,  my parents, teachers, relatives, friends, and the school nurse.  It’s always been a difficult thing to tell someone that I have diabetes.  Most people think its because I ate too much sugar as a kid, that just makes me mad.  Type 1 diabetes can happen to anyone.  The reasons I don’t like telling people is because you never know what that person is going to say.  I don’t want sympathy from anyone, I want to be treated just like everyone else.  I also don’t want to hear from uneducated people about what I have to do.  I know what I have to do, I’ve had it for about nine years now.  In the end, nobody knows what something is like until you’ve experienced it yourself.

A few years after I was diagnosed, I went through what doctors call a diabetic withdrawal.  I refused to take care of myself, I didn’t take my insulin, or my blood sugar tests.  This means I never knew what blood sugar number I was, but I had to be high since I didn’t take insulin for what I was eating.  I was always miserable and I rejected any sign of happiness that was approached to me.  I began to lose weight again and would even vomit sometimes due to the abuse I was putting my body through.  I wasn’t aware of the consequences that not taking my insulin would have on my body in the future.

I was introduced to an A1C level at a check up with my diabetes doctor.  An A1C level is your average blood sugar over the past 3 months converted into a decimal.  What is considered the average A1C for a diabetic is a 7.5, while a good A1C for a non diabetic is anywhere from a 5.9 to a 6.7.  Every tenth of a decimal is a big change.  An exceptional blood glucose number for a diabetic is anywhere from 80 to 140.  Anything below 80 is considered low and anything above 160 is considered high.  From 140-160 is a blood sugar level that could be better. A non diabetics blood sugar should be around 80-130.  When I went through my diabetic withdrawal, my A1C was a 9.6.  This means my average blood sugar was around 200.  I am disgusted in myself that I put myself through that.  It was at that doctors appointment where I feared for my life.  My doctor told me that without insulin I will die.  If I keep rejecting diabetes instead of facing it head on, I will inflict so much damage on my body that I can go blind, I could lose fingers, toes, possibly a whole limb.  I was scared for my life, and I needed a change.

That night after the doctors appointment, I cried myself to sleep.  The next day I was speechless to anyone who talked to me because all I could think about was what I had to do.  I decided to tell myself that I am no different than anyone else.  Just because I have a disability doesn’t mean that I am any less than a non diabetic.  My goal from that point on was to have an A1C better than the average diabetic’s A1C of 7.5.  It was also to be as close to a non diabetic’s a1c as possible .

Over the course of only one year I made a drastic improvement.  One that made my doctor tell me I was a perfect patient.  What I did in this year was for myself  and my own physical and mental health.  I switched from using needles to using a pump.  A pump is about an inch wide and an inch and a half long that is attached to the outer skin on your body.  The pump is changed every 3 days and has a capsule that punctures through the skin so insulin can get inside you.  A meter does all of the calculations for me and honestly makes my life a lot easier.  I decided to educate myself on this disease by reading books about it, testing out different methods to see what works best for me, and even being able to adjust my dosage of insulin on my own.  I was able to get my A1C down to a 6.9 just a few months ago.  The happiness that filled my body when I heard that was the best feeling I’ve had related to diabetes ever.  That was the best news I have ever received in my life.  I couldn’t have made my life easier without my mom, dad, friends and family that were willing to educate themselves on what I have to live through. Words cannot describe how thankful I am for that.

Although I do have my happy moments, which I try to ride for as long as I can, I have some hate built up inside of me.  This hate comes from all of the feelings I have stacked up inside of me that if I explain to someone, they won’t understand.  I hate being rude to my family members, friends, and loved ones just because I’m having a mood swing.  They don’t deserve to be treated that way, but I don’t have the ability to stop myself.  I hate having to stay up all night because my blood sugar levels won’t come down.  I hate having to sit out in hockey games or wake up in the middle of the night because my blood sugar levels are too low.  I hate having to prick my finger 6 times a day. I hate needles. I hate diabetes and the effect it has on me, but I love myself, my family, my friends, and life itself.  If type 1 diabetes is something I have to deal with for the rest of my life then I say, bring it on.  People out there have it much worse than me, so my advice to all reading this, enjoy life to the fullest and appreciate everything because everyone has something.  Diabetes is a part of me, it’s in my blood, it changed my character, it made me more mature, and it made me the well developed and strong person I am today.

-Nicholas Pekarik, NickyNick & Co.