Not Such a Secret

"I'm from New Jersey. I'm seventeen. I'm Pakistani. I'm Pre-med. I'm majoring in Biomedical Engineering. And, oh, I'm a diabetic."

This statement came out of my mouth several dozen times when I started my undergraduate studies. From the first time I was away from the cocoon of my family, I always disclosed my diabetes. But I also treated it as an afterthought. Therefore, everyone around me didn't really notice the diabetes. Usually it was exactly what I wanted except for the few occasional times people forgot.

Why did I tell them? Because it made me feel safe to know the people closest to me knew well about my "serious" medical condition. And because my mother always told everyone for me. Loudly. And vehemently. But after freshman year, the splurge train about my diabetes didn't roll out very often. Mostly because I felt too independent (read: cocky teenager) to share about my life with the big D everyday. It was my own mental hurdle to overcome. I nonchalantly told my research advisers about it and they never really cared about the days off or extra snack breaks. I'm lucky that nothing horrible has ever happened with my diabetes, but planning for the worst case scenarios has always given me a safety blanket.

Since becoming an active participant in the DOC, I bring up my diabetes more often than I used to, but my "it's no big deal" attitude towards it hasn't changed at all. I'm still learning about what kind of people to tell in what manner. Sometimes inundating people with facts is not the right way to go. Sometimes not telling them enough makes them feel less important or unintelligent. Sometimes they just figure it out by watching me inhale glucose tabs or stab my fingers.

What I recently realized is that I shouldn't be ashamed of my diabetes and all it entails. I can scream that I have diabetes from the roof tops. I shouldn't be embarrassed by the beeping or the bleeding. Now, I do have stuff to be embarrassed about (like my guilty pleasure music or not zipping up my fly) but all in all my slacker pancreas and the havoc it causes shouldn't ever bring about shame. Because I can't control everything. I try to do my best and remember all the things I am without diabetes ever coming into the picture.

I am adventurous.

I am a rock climber.

I am smarter than the average bear.

I am a student.

I am caring.

I am a daughter, a sister, and an aunt.

And I am thriving with diabetes (in case you didn't know).

This post is my March entry in the DSMA Blog Carnival. If you’d like to participate too, you can get all of the information at http://diabetessocmed.com/2012/march-dsma-blog-carnival-2/

Are You Okay?

I know that worry has existed as a human emotion almost as long as humans have been around. I know that worry from others is a sign that you're not alone in the big bad world. I know that worry sounds like a four letter word to me.

Worry. Care. Concern.

Whatever you call it. However you see it. I feel like those three words sear into me sometimes. Sometimes, I just want to scream until my lungs are empty: I AM OKAY.

Just because I have diabetes, it does not mean I am some fragile little glass figurine that will crack if you tip me the wrong way (and yes, I believe the same thing about be a woman. I can do almost anything my brothers can do). I am strong. I am vibrant. I am resilient.

Worry is needed sometimes in limited quantities. The only person I let get away with it rampantly is my mom (because she's my mom. Worrying can make her overbearing, but she's connected to me).

I will unabashedly declare that I have diabetes, because I want people to know in case something happens to me. I want people know that I am strong enough to do or try whatever I set my mind do (school, climbing, the presidency (just for Simon), whatever!).

There are different reactions. Public and written all over your face. Private and whispered around guarded corners. Everyone has an opinion. And they're entitled to it. But I wish they knew me better (AND ASKED QUESTIONS) before they formed them.

My first class my freshman year was Engineering and Design. I had it with the Assistant Dean of the college in a computer lab where no food or drink was allowed. Instead of pestering the guy later, I just raised my hand and asked if it was alright if I brought juice and water with me because of my diabetes. Of course he said it was okay. What I didn't find out until I was nearly graduating (from one of the college secretaries at that) is that as soon as the lecture was over, he stumbled into the college's front office in a panic about what to do if I passed out in class or some such traumatic medical event arose. The funniest part of this story is that I was his preceptor for three years after my freshman year teaching right alongside him, and I don't think he was ever showed that fear (I hope he realized it was unnecessary).

I've started a bootcamp training program. My trainer looked like she was filled with questions that she never asked when I told her I'm a diabetic. And she asks at least 5 or 6 times during a 50 minute session if I'm okay. I can see the look of concern in her eyes just for me while she's scanning the room of us. It drives me a little nuts, but I know the longer I stay with the program and the more she gets to know me, the less she'll ask. I know she's got that same sense of panic as that professor, because she wears it on her face.

Sometimes, my blood sugar is low and I need help. But more often than not, I figure it out myself. I don't know if it's the stubborn streak in me, or something else all together (maybe it's just the phrase). I am fiercely independent most days, which can cause trouble once in a blue moon. I've been lucky and blessed so far. Without taking it for granted, I just wish for one day I could look around and know that no one is worrying.

When There Are No Words...

I'm too busy to write so instead I'm posting my baking pictures from the week. I think they all tasted delicious!

The unfortunately burnt DSMA cookie... One of these days...

Blue Circle Sugar Cookies for World Diabetes Day!

Three Different Blue Circles for Three Different Reasons (Exercise, Eating, and Advocacy!)

Pumpking Pie for the DOC's Shining Blue Star: Cherise!

Monkey Wrenches

Life has a funny way of putting obstacles in front of you in order to see how high you can jump. This week is not particularly pleasant for me because of a Cell Biology exam I have on Thursday followed by a poster presentation with a fellow graduate student on Friday. This is kind of the norm of graduate school so I can't say that I'm terribly surprised, but I am a little disappointed to not be more out and about advocating for the American Diabetes Month. I've had to give up my facebook and Twitter feeds for a few days and it's kinda killing me (Yes, I'm one of those poorpeople who's addicted to social media...). I still read a few here and there but doing my best to stay focus is sooo difficult even when I'm in the "zone".

In the moments in between studying and programming and sleeping and sometimes eating, I've managed to at least participate and get the word out about a few really awesome Diabetes Awareness activities everyone with diabetes (and without) should know about. For instance...

• The BIG blue Test! or the big BLUE test! or the big blue TEST! (see what I did there?)
  I was in NYC helping out while they were shooting this awesome chick. (yea I'm hiding somewhere in those group shots). You don't have to have diabetes to participate. You just have to move. What's the reward? IMPROVING YOUR HEALTH! and SAVING LIVES! In the good old US of A and across the globe. All you have to do is exercise for 15 minutes. No silly signing up either! Check it out at www.bigbluetest.org
• Blue Fridays! With awesome giveaways! Even doable on rainy days! Bonus points if you wear blue everyday?! (okay, no more rhyming. I promise)
  Every Friday in November, wear a little or a lot of blue to raise awareness! In your hair, on your nails, with your friends...T-shirts, socks, and bathrobes will do too! Check out the Facebook page here! and follow #bluefriday on Twitter!
• Team Type 1's Run Across America
  If there were ever a group of people I'd follow off a cliff, it would probably these 10 (or 11) guys. Phil Southerland (the CEO) is a great guy, and he's a constant reminder that diabetes doesn't hold any of us down from surpassing our dreams. This group of diabetic athletes is running from coast to coast, and they are estimated to land in NYC on November 14th!
• Blood Sugar Testing Flash Mob in Times Square
  I'm gonna try my darnedest to make it out to Times Square for a Blood Sugar Testing Flash Mob in Times Square on noon on Sunday, Novemeber 13th in front of the Kodak screen. If you can't make it, help out this fantastic young man by sending a picture of you and your friend Diabetes to kodak@aerva.com to be there in spirit!
• World Diabetes Day Postcard Exchange
  Art is always therapeutic, but in this case, it's doubly so because I get to reach out to someone. I was assigned an awesome PWD (or their family, friends, and awesome associates). I get make some art for them. And then I'll get one. Let's hope it's something that doesn't turn out like those finger paints when I was three...
• World Diabetes Day
  Blue Monuments. Diabetes Awareness Events. Reach Out and Hug A Diabetic Events... I may be trapped in class all day, but I'll do something awesome for it all on my own if I have to!

Alright. I have another story to share but it's going to have to wait. Wish me luck on my test.

Better Late than Never? T1Din3

FEAR... ANGER... STRENGTH

Those are my three words describing what Type 1 Diabetes means to me. Since I like to ramble (on and on and on), here's why I picked those three little words.

Having a condition where one small mistake like taking too much insulin can cost my life scares the daylights out of me. I'm afraid about tons of things about my body (but not creepy crawlies, dark spaces, and strange places). Is every new ache or pain a sign that I'm developing another chronic condition as a complication resulting from inattention to my nagging friend, Diabetes? Is my foot numb because I'm going to loose it or just because I was sitting on it funny? Will I fall asleep one day and wake up the next unable to see? And what if I don't wake up? I believe that somethings are beyond my control. Yes, I could step off the curb and get hit by a bus or have a freak tree fall on me. I'm not afraid of dying. I'm afraid of living a life where I can't do or experience things the way I'm used to because of ME.

I'm angry that there isn't a cure yet (just around the corner, right?). I'm angry I have to stab my fingers. I'm angry that people don't understand (yes, I can eat sugar. Thank you very much for your concern). I don't express that anger all the time but it doesn't mean that it isn't there. I'm angry that I have to spend so much time scheduling and seeing doctors. I'm angry that dealing with medical (or any) insurance companies is so difficult (but I'm grateful that I have it). I'm angry that I survived because I was born and raised in the United States but if it was one of many other parts of the world, I wouldn't have made it these past 14 years. I'm angry that diabetes tries to hold me back, but...

I am stronger for having lived with this crummy chronic condition. I was the only 9 year old I knew that wasn't afraid of hospitals. I'm living the life I want to be (even though I may complain sometimes). Diabetes has taught me about my body and how it works. I had a better understanding of the Endocrine system by the time I was 14 years old than some early medical students I know because I devoured books about my Pancreas (read: Paperweight). I'm a fighter (that anger sometimes helps me with finding energy to fight). Diabetes won't put me down. Not shots. Not sticks. Not sugar. These things won't hold me back from getting to what I want for my life.

This post was written as part of the JDRF Juvenation Blog Carnival for National Diabetes Month! For more information, check out their post here or Juvenation.org!

To test, or not to test...

DSMA Blog Carnival Question: What types of decisions and frequency of diabetes related decisions do you make in any given day?

My man, Shakespeare (or Hamlet), had the question phrased right even though he missed my topic. There are so many questions that role around in our minds all day long. Especially as a diabetic, the questions seem like they never end. I don't think that it's ever "noble" to choose laziness or indecision over responsibility or action but I can't say that I always represent myself as Queen of my diabetes...

I had a professor in my Freshman year of college tell me that computers are dumb machines. You tell it what to do and that's exactly what it does. So if it's malfunctioning, there's a good chance the problem lies between the keyboard and the chair (aka you told it something other than what you meant to). Whenever I think of decisions, I think of that little snippet of wisdom.

Making diabetes decisions isn't as nearly as easy as writing a computer program (okay, that's pretty difficult sometimes). I can't say if this crazy number appears, then I need exactly this much insulin to fix it (even though I wish I could). I constantly have to keep track of all these extra variables (sleeping, eating, exercising, etc) and my simple little if-statement blows out of proportion with extra clauses. If I ate, did I eat more protein, more carbs, or more vegetables? If I bolus, did I account for how long it takes my body to break down an apple versus pizza? Did I remember to subtract some for all the extra exercising I'm planning? Is it enough aerobic exercise or is it anaerobic and am I going to need more or less insulin? AND how do all of the answers to these gigantic questions come together?

The toughest decision I make is the one I run into most often. Should I test my blood sugar? Do I ever really want to test? NO. It's really that simple. But without knowing that little piece of info, it's like wandering around in the dark without knowing anything about where I am. Yes, sometimes I'll treat based on what my Dexcom (aka my blood sugar etch-a-sketch) says, buzzes, or screams at me. I don't feel good about it, but gosh darn it, it's a whoooooooole lot easier. I wake up every morning struggling with that decision. It plagues me at lunch when I realize I left my tester at my desk or in my car, and I really don't want to go wait any longer to eat. It nags me at night when I haven't checked, but I'm already tucked into bed. The way I understand it (and explain to everyone else too), I'm SUPPOSED to test:

• Whenever I wake up (yes it can happen more than once if I nap) [Let's guess once for this example]
• Whenever I go to bed
• Before I eat (Between 3 and 6 times a day) [That's why eating 6 meals in CRAZZZY but good for you nonetheless]
• 2 hours after I eat (Between 3 and 6 times a day) [post-prandial test. I despise them]
• Before I exercise
• After I exercise
• Before I drive my car
• Anytime in between when I feel "off"

So for anyone keeping track, that's a minimum of 10 times and a maximum of 16 times I "should" test everyday assuming I don't feel low or high all day long and don't drive. If I sleep for 8 hours, that means I’m testing about once an hour if I divide that maximum number up evenly. Do I ever test that often? Sometimes. Everyday? I'd lose my mind. Usually it's between 4 to 7 times a day that I stab my cute little fingers. I really can't stand doing post-prandials unless it's in preparation for a snack or I feel off.

For brevity, I won't talk about the decisions revolving around food or actually bolusing insulin. They occur way more than 3-6 times a day (somedays it feels like I’m hungry every second of the day). I won’t talk about the decisions I make in fear of low blood sugars (like drinking an extra swig of juice), high blood sugars (why, yes I’ll treat those double up arrows even though I know my continuous glucose monitor will be nose diving in ten minutes), and glucose roller coasters (how long can I go, eating nothing but vegetables and drinking nothing but water?). AND we really won't discuss my aversion to changing my infusion sites or sensors (REALLY REALLY hate it) and the decisions that those devices add to the situation (yes, I should put those extra supplies in my bag even if I'm going out on the town).

What makes diabetes really overwhelming is that I can't pass some of those decisions along to someone else (like when I tell my roomies to decide what our plans are for the evening). These silly diabetes decisions stick to me like glue. And when I decide to do nothing or be lazy, I end up paying the price with a hyperglycemic-hangover or a hypoglycemic-slump.

If I could build a little decision making diabetes robot or some sort of awesome diabetes-centered Magic-8 ball, then I would in a heartbeat. I'd save my decision making power for more important life and fun decisions. I'd instantly forget about how many silly Diabetes decisions I have to make every moment of every day and instead, spend more time deciding how big my smile should be or the minimum amount of sunshine I need to soak in a day to appropriately fuel that grin.

This post is my October entry in the DSMA Blog Carnival. If you’d like to participate too, you can get all of the information at http://diabetessocmed.com/2011/october-dsma-blog-carnival/

UNite for a Healthy Future

So yesterday was the UNite for a Healthy Future event at the NY Academy of Medicine / Central Park. And the only word I can keep coming up with to describe it is amazing.

When speaking to someone (a fellow PWD, a parent, an activist, I don't really remember who exactly [more on that later]), I was recalling the last time I had physically been in the room with many other diabetics. The last time it happened was maybe 3 years after my diagnosis and it was because my new doctor really wanted me to attend their support group. Unfortunately, most of the patients were much older or much younger and a little hard for me to relate to (I'll blame my youth & lack of experience cause I'm sure they were ripe with info). Despite attending a few fundraising activities like walks, I can't say I've really ever connected with another diabetic. I've been a diabetic for over 14 years now. Which means I've been sorely missing my fellow 'betes buddies.

Walking into a group of people and just being overwhelmed by this feeling of belonging was extremely cathartic and freeing. None of that means that I didn't spend the entire day talking about what I knew about diabetes, research, the FDA, human physiology, etc. But having other people there to help explain was really comforting. Not feeling strange to say, "Hey, I need to test first," was really bizarre for me after spending sooo much time being the only PWD I know.

To prepare for the day (and the at least 1.5 hr commute of walking, trains, and subways), I packed a large bag of snacks, extra clothes, and my diabetes supplies (I assumed I'd be outside and on my feet all day). What I really needed yesterday was a lot of water, a lot of energy, and a lot of glucose. Looking back, I wish I had packed a little differently but hopefully, this experience will help prepare for future diabetes outreach events.

So I was actually volunteering [for the awesome Isabella Platon @ IDF :)] at the event in addition to just being another person with D, which meant that I got to meet an extraordinary number of people that ranged the activism gamete (and forget their names regardless of how important & influential they are [sorry!]) while running around taking care of organizational things (what? why? where? when?). There was sooo much going on yesterday that there was actually a lot that I missed but I wanted to participate in.

The bullet point rundown & SUPER-brief recap of the events:

• Live Art Mural - All day creation of art representing different Non-Communicable Diseases (NCDs). The depictions were so creative, vivid, and enigmatic. I loved meeting/talking with Zoey Stevens but really all the artists were so curious about how and why diabetes affects everyday life.
• Children's Art Mural - Great event for kids lead by two art therapists including Lea Ann Thill.
• Bike Ride - Lead by Phil Southerland & Team Type 1, a group of 10-15 adults & kids rode a 1 kilometer track around Central Park.
• Big Blue Test Video Shoot / Walk - Walking around Central Park North handing out blue balloons and "woohoo"-ing for an hour while two awesome videographers captured our excitement and activism. Love knowing I'm helping to create something that will hopefully reach many people and do some good for the less fortunate all at the same time.
• Socamotion, Tai Chi, & Zumba - Enthralling and energetic ways to get your blood circulating, but unfortunately one of the things I didn't get to experience much (read: almost any) of.
• Information/Outreach Pods - Met lots of great people from the International Diabetes Federation, dLife, JDRF NY Ride to Cure, Living In Progress, TuDiabetes, and more. Everyone was super-welcoming, super-informative, and super-empowered.

Photos from the day can be found here and here! Unfortunately in all the craziness, not only did my phone die (with no extra charger in sight) leading to no awesome Twitter updates, but also I didn't manage to get any pictures that weren't requested by other people. But one of these days, I'll figure out how to multi-task a little more efficiently.

Endo Visits and New Forgetful Starts

So. I saw my endo before I left my parents place to start my life at grad school with a "clean diabetes" record. Everything is up to date for a while and my HbA1c?

Pictures don't lie. I'm doing okay. There were somethings I should have probably asked about (primarily about my stomach) but I was to enamored by my great stats with less lows. I'm as healthy as I could be. More exercise wouldn't kill me but in terms of numbers and diabetes, I'm doing good.

My first day of classes went fairly well despite being exhausted from lots of driving with an 8:40 am class. I think I've talked about having diabetes quite a bit to my new classmates enough that they won't forget I have it. (Yes, I can eat that but no, I don't want some now; Yes those are glucose pills and yes I eat them for almost every one of my many lows; No I don't need some orange juice. I'm just annoyed with this homework). However, I will forget some of my diabetes essential and non-essential devices in random and sometimes untraceable places.

We decided to have our first study group on campus in one of the student dorms since they have much larger living rooms than my apartment. We eventually traveled from one room to another and finally figured out our homework woes. When I was getting ready to leave, I realized I didn't have Eggy (my Dexcom reciever) anddddd the panic sets in. Freaking out, I retraced my steps and unpacked/repacked my bag between 3 and 30 times. I was just about to give up when my classmate picked up his phone, let us into his dorm, and found it on the floor of his kitchen.

The lesson I learned? I need another SPIbelt. With Two Pockets. And preferably a clear window for both of them. Which I think is a dream. Or maybe a very expensive CUSTOM hope. One of these days I'll figure out how to walk around without losing/forgetting one of my many diabetic accoutrements somewhere. Til then, I'll keep my fingers crossed and keep patting my pockets

Can't Get Out of My View?

So today I spent about 7 hours in my car. I made a point of putting in a new Dexcom sensor just after breakfast, because as awesome as testing at 70 mph hour is (shh, don't judge) it's really hard to accomplish.

Unfortunately, regardless of my fairly spotless record with Dexcom's accuracy, today did not reassure me that it works well. My Egg-shaped-friend (Eggy for those of you who are friends) beeped away ALL day. 2 of the 35 times were actually correct. The rest were waaaaaaaaaaaaay outta whack. But because I stopped trusting it, I missed the really bad one this evening.

After my 7 hour drive, my mom requested that I attend a dinner party at the neighbors. Drive, dress, dine (wheeeeeeee, not). Dinner was quite fabulous even though I didn't eat very much. I was much more enamored by all the little kids around, but I digress.

Most of the riveting conversation of the evening revolved around the children's food allergies and the struggles that they bring. I listened intently and gently prodded about difficult moments. Having diabetes changes my relationship with food, but exclusionary diets are extremely painstaking to maintain especially when those food cause life threatening reactions. Everyone was sympathetic, but only the two moms of kids with allergies REALLY got it.

Later, the conversation turned to fashion. Particularly, my custom "culturally" appropriate pants with pockets. Most Pakistani pants are baggy and don't include pockets. My mom had to pay the tailor extra for each one, but I was rather happy to have somewhere to put Eggy and my cell phone. That was when the conversation turned to "You're diabetic? Explain ALL of it." Usually, I over explain it but I did my best to squeeze in the vital information before dessert was served. Then, I casually walked over and explained how carb-counting worked. Fairly normal for me to SWAG (Scientific Wild Ass Guess) the carbs in a homemade dessert. I looked and sounded very convincing. I felt convincing. UNTIL, an hour later when I was tucking myself into bed.

PJs? Check. Brushed Teeth? Check. Blood sugar? I kept putting it off. I kept reading things on my phone and started getting this strange sensation of tunnel focus (just off the tip of my nose). I heard Eggster buzzing away but ignored him because of his track record. The feeling of tunnel focus was starting to make me uneasy so I pulled out my Mini and tested to find a fabulous (not) reading of 33 mg/dl. Eggy says nothing but Low (dun dun dunnnn). And then it all started to make sense. I ran downstairs for a tall glass of orange juice. Waited 15 minutes. 45 mg/dl. Not quite right. More orange juice followed by some rice cause (surprise!) I was STARVING.

In the end, the story has a happy ending. I leveled out nicely to a 110 mg/dl after it was all said and done. The scary feeling was the knowing something was wrong but my lack of ability to do anything about it. It's been happening more and more with my lows and I don't know how to snap out of it. My focus was fixed but not on what I needed to survive but some little lighted screen in the palm of my hand. Gotta fix that. Gotta listen. There are always signs. Little breadcrumbs. Gotta follow them to keep my life with D on track for survival.