Today is the day...

November 14, 2011. Today is World Diabetes Day! I feel a little weird wishing myself and my friends a "happy world diabetes day", but there is no reason why it shouldn't be happy! Today is a day to celebrate my accomplishments: the difficulties I have overcome, the lines I have crossed, and the battles I have won every day. It's also a day for me to get the word out about this disease-- to help people better understand what I, and so many others, go through-- to help people understand that it is a big deal. And I suppose that's what this blog is about. It's a way for me to share my battles and frustrations, a place for me to share my progress and victories, and a place where family, friends and anyone, really, can get a look into life with diabetes.

I have had this blog set up for quite some time now, but I have never gotten around to publishing an entry. Maybe it has to do with anxiety over saying the perfect thing, or OCD about wanting to start on a day that was special to me and that made sense to my diabetes history... Well, today is the day.

Not only is today World Diabetes Day, but today marks the 100-Month Mark of my diagnosis. Sometime in the near future, an entire entry will be devoted to my diagnosis- but today has been a time for me to reflect on my precious time with T1....

[8.33333... Years]

100 Months

[435 Weeks]

[3045 Days]

[73,080 Hours]

[4,384,800 Minutes]

[263,088,000 Seconds]

That's more than... 

18,000 finger sticks; 2500 shots; 1,000 set changes; 40 trips to Joslin; 

90,000 units of insulin (that's almost a can of soda!); 

an ungodly amount of glucose tabs, juicy juice and gatorade...

Diabetes makes me think about numbers, as you can see. But those numbers aren't the important ones. What have kept me going these 100 Months, and will keep me going for hundreds more, are the small numbers.

One Mother: My biggest fan and #1 cheerleader. Keeper of records, pharmaco-magician, and expert nagger. My near-perfect control in high school? That was all her (as is evidenced by the difficulties that have come with being on my own in college... More on that later.) All the carb information I could ever want was taped up inside the food cabinet. Set changes were always laid out on a clean table and my test kit magically cleaned itself out ;) I don't know that I have ever or will ever give my mom enough credit for everything she has done and will do. I don't know if I will ever fully understand what it must be like to have a diabetic child-- worries, fear, anxiety... One Super Hero.

One Father: My biggest fan and #1 cheerleader. (Am I allowed to do that? Well, I just did it.) Keeper of calm, and expert doctor-chauffeur. He has always kept me from putting the pressure and blame on myself, constantly reminding me that God is in control and my best is good enough. He is there always, right beside Mom, to help and encourage. He has always helped to carry the burden of D when it was too heavy for me to do it on my own... Make that Two Super Heroes.

One Brother: My big brother. Permanent playmate, encourager, competitor, and frenemy :) Sure, he doesn't have much of a clue when it comes to the ins and outs of living a D life...For him it meant that we got cell phones, the snack cabinet got taken over by medical supplies, random numbers were yelled across the house, and dinner got served with measuring cups instead of regular spoons. It meant that he didn't get to finish my desserts anymore--I had to finish everything on my plate because I already took insulin for it. It meant doing 2am blood sugar checks (which I know must have been an adventure) to help keep his little sister healthy. I've never heard him complain-- not about any of it. Most importantly, my brother was the first person to make me realize that diabetes doesn't make me any different-- I am still, and will always be, the same Me.

Church Family: The group of people, young and old, at home and at school, praying for me everyday-- asking me questions about my health (sometimes it gets annoying, I'll admit- but I know they care!) and investing time and care into my life.


Friends: Countless friends who try their darnedest to understand, even though we know they never quite will-- who check their blood sugars, bring me juice, and make ridiculous diabetes jokes-- who pray for me and encourage me and push me to be my best self.

These people mean more to me than any number. These people are my reason for celebrating today. So, thank you to the people in my life who mean more to me than they could ever know. And Happy World Diabetes Day :)

Lingo:

Lingo (noun):
strange or incomprehensible language or  speech: as 

(a) a foreign language

(b) the special vocabulary of a particular field of interest

(c) language characteristic of an individual

Diabetes has its own language. I have assimilated it into my daily life, and, more often than not, I forget that D-lingo is foreign to most people. Some of it's technical (you know me, I love some good science), and some of it is just plain silly. Read some of it, read all of it, read none of it, re-visit it if you ever get confused-- Hopefully this entry will help you "normal" people to  understand more of what I write about.

Diabetes

Type 1 [Juvenile, Insulin-dependent, what I have :)]: an autoimmune disorder resulting from a combination of genetic and environmental factors. [As I understand it, there are multiple genes responsible for the predisposition to diabetes, and multiple environmental factors that can trigger onset.] Basically, at some point, for some reason, a T1's body thinks that the insulin-producing cells of the pancreas are bad and kills them off. The body's ability to produce insulin is completely lost, so artificial insulin must be taken [hence the "insulin-dependent"].

Type 2 [Adult-onset, Insulin-resistant]: a metabolic disorder. For some reason (genetics, weight, metabolism, etc.), the body has stopped responding as well to its own insulin. Diet, exercise, medication, and insulin are some of the many treatment options. When people think of "diabetes", they generally are thinking of type 2-- it gets significantly more media attention, and is much more common than T1.

Type 3: an honorary diabetic, has a normally functioning pancreas but understands the ins and outs of D because, in some way or another, they or someone in their life has been significantly impacted by it. (Primary examples: Mom and Dad) [Note: "Type 3" is also used to describe some more obscure types of diabetes that have not been qualified as either type 1 or type 2, but in the DOC (diabetes online community), type 3 is commonly used as I have defined here.]

Medications

Insulin: a hormone produced in the pancreas that regulates body metabolism by allowing cells to take up, use, and store sugar [from the food we eat]. Think of it this way: insulin is the key that unlocks your cells to let sugar in. That sugar then provides energy for your body to function the way it's supposed to. The amount of insulin required by any given person varies by person, time of day, activity level, stress.... Everyone is different and each unique insulin regimen reflects the amount of medication needed to keep that individual healthy, and healthy is what matters. Insulin can be delivered via insulin pump or injection. It comes in vials and pens (for injections).

Glucagon: a hormone produced in the pancreas that raises blood sugar levels (think about it as the opposite of insulin). I have an emergency glucagon kit that can be injected if I seize and/or pass out from low blood sugar [which hasn't happened to me ever].

Victoza: a medicine I take once a day via injection. It helps to stabilize my blood sugars by decreasing my body's natural random release of glucagon and slowing gastric emptying. It's designed for people with Type 2, but I am taking it off-label (i.e. not as directed). Unlike insulin and glucagon, Victoza isn't replacing something my body already makes, it's completely artificial, designed to help people like me take better control of their diabetes. :)

Gadgets, etc.

Pump [Insulin Pump]: affectionately nick-named Minnie. This sweet little gadget gives me a constant drip of insulin, and extra boluses when I tell it to, for food or to correct blood sugars. It has nifty calculators to remember how much insulin I need for what, but it doesn't do everything-- I still need to test 6+ times a day and do a set change once every 3 days. It's still way better than 4+ shots a day!
*On a silly note, whenever I try to type "insulin pump", I almost inevitably type "insulin pimp" by accident. It makes me giggle. Also, having a pump is like having an inside joke with myself. Any time anyone uses the word pump in a sentence, I laugh out loud. Sometimes I probably seem crazy :)*
Pumping has its very own lingo...

• Infusion Set: My pump connects to me via an infusion set (I use the silhouette, the picture to the left). It is injected into fat tissue (stomach or hips usually) using a needle, which is pulled out to leave just the cannula (a little tube) behind. The needle/cannula is 13mm long and lasts for 3 days if there aren't any issues. A set change takes about 3 minutes and consists of me inserting a new set and refilling the pump's insulin reservoir. [It sounds like a lot, but it's an awesome alternative to lots of shots daily!] 
• Basal: the automatic, constant drip of insulin that my pump delivers 24/7/365. The basal rate changes slightly throughout the day. I can also set temporary rates to accommodate for stress, sickness, or exercise-- I refer to that as "turning up" or "turning down".
• Bolus: the extra doses of insulin I give throughout the day to adjust  blood sugars and account for the carbs I eat. The pump calculates my bolus based on insulin:carb ratios and sensitivity factors I pre-set into its "BolusWizard". 

Test Kit: a consolidated collection of testing supplies; a little black case with my [blood glucose] meter, test strips (what the blood actually goes on), and lancets (what I prick my finger with).

• Test: to check blood sugar. This involves pricking my finger with a lancet, followed by squeezing the dickens out of my finger tip and positing the blood on a test strip in the meter.
• Blood Sugar: a measure, in mg/dL, of the amount of glucose in the blood stream. For a non-diabetic, 70-120 is normal. I aim for between 90 and 180.
• Low [low blood sugar, hypoglycemia]: a blood sugar below 80, treated immediately with fast-acting (pure) sugar- My go-to treatments are orange candy and Juicy Juice :) When I am low, I feel shaky, weak, fatigued, dizzy among other things-- I would say it is easily one of the most miserable parts of diabetes.
• High [high blood sugar, hyperglycemia]: a blood sugar over 250 is high. High blood sugar is responsible for most of the long-term complications of diabetes. They are treated immediately with insulin. High blood sugar resulting from too little insulin can lead to Ketones: toxic byproducts from the body using fat and muscle for energy instead of sugar in the absence of insulin. Ketones are dangerous! When I am high I feel lethargic, nauseous, and thirsty. 
• Dexcom: a continuous glucose monitor. It doesn't replace testing, but it gives a 24-hour picture of blood sugar trends by taking glucose reading in the interstitial fluid about every 5 minutes. 

A1c [HbA1c]: Hemoglobin A1c- a measure of glycated hemoglobin. [Oh, you're still waiting for that in English?] It's a measure of average blood sugar over a period of a couple months. It's measured in %, not mg/dL like blood sugar is. For me, a 7% would probably be ideal, but for now, it's just another number to work on, not stress about.


This isn't a comprehensive list of D lingo, but it sure is a good start. I will add and edit as time goes on and as I write more.

I hope this is somewhat insightful :) Let me know if I missed anything or need to explain anything better...

And then one day I got diabetes...

It was time for my annual physical at the pediatrician's office. I turned 13 two months prior--this was my first physical as a teenager and the last time that I would need a vaccine/booster for at least a couple of years... I was weirdly excited as we were walking in to the Pediatrics Office, silently cheering that this was the last time I would need a shot in a long time. Oh, the irony...

Pee in a cup.     Height.     Weight.     Paper gown.     Touch your toes.     Walk across the room.     Breathe in.     Breathe out.     Say "ah".     Everything looks good.     Be back in a minute...

The doctor walked back into the room and all of a sudden everything was different- the way she looked at me and the way she was speaking. She sat down on her stool, looked at me and said something along the lines of "wah wah wah wah" (think Charlie Brown's teacher)... Well, that's not exactly it-- more like "There is way too much sugar in your pee. wah wah wah. You have diabetes. wah wah wah. You need to get your blood drawn just to be sure. wah wah wah. You'll probably need to go to the hospital. wah wah wah wah wah." All I heard were scary words. All I saw was an overly calm doctor and a blank-faced mom (probably because she was paying attention and didn't go all Charlie Brown on the conversation). All I felt was empty, clueless, blank... and I was starting to feel sick.

Per the doctor's orders, we went to the local hospital next door for me to get my blood drawn. [I assume they were checking my blood sugar, blood ketones, and HbA1c]. I didn't feel sick, or at least I didn't notice, until our drive home. Headache, nausea, and a funny taste in my mouth-- things that I can now easily peg as high blood sugar symptoms. We got home and mom did most of the packing. I remember sitting around waiting for my blood test results--without those we couldn't be sure I had diabetes. The doctor could have been wrong, right? I was pretty pissed that my parents were acting like I had to go to the hospital even though we hadn't gotten the final word. Sure enough, though, the phone rang and someone on the other end waved their magic wand and my pancreas was broken forever. Ok, ok. That's totally not how it works, but that's what it felt like at the moment. I was fine that morning and all of a sudden my parents are rushing me to the hospital?! Seriously, what gives?!

So--in we went to the emergency room at Children's Hospital Boston. I got a room pretty quickly. A nurse or two or three tried to give me IVs busting a couple veins in the process. My infuriated mother demanded a doctor come in and perform said IV. Eventually they decided I didn't need an IV, after all. I didn't even care at that point. I was confused and scared, and terrified of the impending first insulin shot. dun dun dunnn. The nurse came into the room to give me the shot, my first reaction was to the needle: That's it?! That little thing?! Then it was time for the shot. She pinched the back of my right arm, and before I knew it, it was over. I was still scrunching my face and asking if she could just get it over with already when she said it was over. Didn't even feel it. *sigh of relief*. For at least a little while we could breathe-- I had insulin on board and a teeny bit of time to let my mind stop spinning.

I was admitted to a room on the endocrinology floor. I had an endocrinologist and a ton of nurses always in and out. I think there was a team of medical students, too. I answered the same questions for all of them. Every hour or two there was someone in to take my vitals-- heart rate, blood pressure, temperature, whatever. They checked my blood sugar a ton, too: the meter was huge, the lancet was huger (ouch!), and it pretty much drained my finger of blood each time.

To add to the adventure of my hospital stay-- I had the roommate from...you know where. Though, I'll be honest-- she would probably melt there, because she kept our room at a brisk 50-something degrees. She treated the hospital like her playground (as did her mother). I think the worst part was when they ordered take-out, when all I could eat was carb-counted hospital meals.

Basically, for the first couple of days in the hospital I was absent all but physically. I felt like crap from getting acclimated to an insulin regimen, lower blood sugars, and life under observation in the starkness of a hospital room. I did what the nurses told me to, ate what the nutritionist told me to eat, and stared at the television screen in the small windows of time where there wasn't a medical professional hovering over me.

Once they figured out my insulin levels and started teaching my family and I, I gained some of my spirit back. I picked out what foods I wanted to eat. I distinctly remember the moment I realized I could have a rice crispy treat for my afternoon snack :) I explored the kitchen down the hall from me and helped myself to diet jello and crystal light. My nurse told me about crushed ice in the freezer, and if I put crystal light on it, it was kinda like a slushie (the best treat second only to my rice krispy). Three of my friends and my aunt came to visit me. People in my church family sent me cards and notes of encouragement. These little things made me smile in the midst of a pretty crappy week.

I was still stressed with all the information headed my way, though. Counting carbohydrate exchanges, calculating insulin doses, testing my blood sugar, and getting shots. My parents had to learn and practice giving me injections. That was the worst-- shots from my parents. I'm sure it was the worst for them, too. I think that's all I'll say about that...

Mom and Dad probably learned a lot more than I did during my stay at the hospital. I spaced for most of that week, and relied on my parents to catch me up later. Somehow along the way, between then and now, I learned [they taught me] almost everything about anything diabetes. I learned how to take care of myself, count carbs, check sugar, take insulin, etc. I have come to terms with my "diagnosis", and now diabetes is a part of me.

Moral of the story: I was pretty darn far off when I said I wouldn't be getting a shot in a long time. Though it wasn't said directly, I learned in the hospital that all this information being thrown at us was our new 24/7/365. I need insulin every day or else I will die. I need to check my blood sugar at least 6 times a day to be my healthiest me. I need to count every single thing that I put into my body. Things I do today affect my life tomorrow and years in the future. Bad choices and bad numbers today mean fewer years later. My life will never be "normal".

Some days I feel cursed. Cursed with all the things I need to do just to stay alive; cursed that every plate of food looks like numbers; cursed that I can never catch a break; cursed to be living in an age where the word "diabetes" carries excessive and inaccurate stigma and everyone thinks they can be your doctor; cursed that tomorrow and the future are a constant weight in my mind.

Always I know I am blessed: blessed with people that care; blessed to be living in a time with cutting edge diabetes supplies; Blessed that I have a God that says I don't have to worry about tomorrow; Blessed that I have been called to overcome challenges; blessed that I am not "normal"