What do you see?

Imagine you come across someone in public. Or you’re a health care provider and you see a patient.

You see this person. Overweight, looks stressed and slightly nervous about being here.

You look a the chart. Type 2 diabetic, on insulin, logs say this person’s blood sugar is running higher than you would like.

You look back at the person, what do you see? Do you see someone who is non-compliant? Someone who doesn’t care for themselves? An annoyance? A burden on society? An idiot?

Let me tell you what you see when you are looking at me. You are seeing a person who has a chronic condition that will never go away. A person who has to worry about this disease from sun up until sun down. Forever. You are seeing a person who has struggled with depression and binge eating since she was 5 years old. You are seeing a person who has a non-typical presentation of diabetes, who must balance insulin resistance with deficiency, as well as losing weight on top of it all. You are looking at a person whose blood sugars are running high, not for lack of effort, but because she can’t afford her next shipment of insulin for a while, and must stretch out what she has.

You are seeing a daughter, a sister, a friend, a partner. A graduate student. A person whose passion in life is to improve the lives of others in similar situations. You are seeing a human being.

So next time you see someone who looks a certain way or has a certain disease, I challenge you look at WHO you see, instead of what.

Rc

Checking in

Hello to anyone who still reads this blog.

This is me checking in.

Hi.

I’ve largely avoided posting anything on here, mostly because I haven’t had any awesome ideas or exciting news. Life is all about graduate school, figuring out who will write letters of recommendation for me, and basically staying alive between exams.

Life is okay, 2014 has been pretty uneventful so far, which in my book is usually a good thing.

I’ve learned a few things though last year:

  • After two pump trials I learned that it’s just not for me. Though who knows what the future will bring, but at the moment I’m not comfortable with that being my treatment plan.
  • I can get a CGM, but I better get it quick (aka while I’m still on my parents’ insurance plan). I found out recently that my particular company WILL cover 85% of the cost of the CGM post-deductible, even if my diagnosis on paper is T2. Which is pretty awesome. I’ve thoroughly enjoyed all of my Dexcom trials, so let’s hope that’s something I can work towards in the coming year.
  • And lastly, figuring out how to bolus for coffee in the morning has saved my constantly sleep-deprived life, and it is awesome.

Ta ta for now.

Rc

Blame

At some point a person with diabetes will *probably* experience that one person without diabetes who insists that they must have either done something wrong to get diabetes, or is failing to do something at the moment to “reverse” it.

This is especially common amongst us Type 2s, considering how much negative press we get about our disease.

You don’t think I’d want to “reverse” this if it were possible? Well, no shit Sherlock, I’d obviously do that if it were an option. For now I’m just trying to get as tight control as possible without going bananas in grad school. Which is way harder than you’d think.

If you’ve ever experienced this, likely you’ve wanted toss a brick or something their way. Maybe one of those hard bricks of brown sugar, just to drive your point home.

But, obviously we can’t wander around throwing things at people who are insensitive and all around so, SO aggravating about what they say to us, so we have to mentally figure out how to process these kinds of encounters.

So here are my thoughts.

Those who are public about their diabetes risk blame and shame as people typically associate the word “diabetes” with “fat”, “lazy”, and “candy bars”.

Now, I can’t speak for Type 1s so my experiences will be more Type 2 specific. Also, Type 2 development can be influenced by lifestyle, so in general I feel like people who say these things to Type 1s are still targeting us, but are just so uninformed that they don’t know that there are different types of diabetes.

Anyway, as a person who is open about having Type 2, I have had several experiences where I’ve had to explain and defend myself: my eating habits, my weight struggles, my exercise regimen. You know, because that is TOTALLY their business.

And I’ve come to the conclusion that at the base of blame is fear.

Yes, that’s right, fear.

People want, no, NEED to believe that you caused this in some way. They need to believe (whether they admit it or not) that there must have been something you did, and that’s why your life is so much more complicated and sharp, pokey thing-filled than theirs. Why? Because they want to think they’re doing everything right. And if you do everything right, you don’t get type 2 diabetes.

“Well, I eat fruits and vegetables,” they say. “Well, I don’t GO to fast food places, and I exercise.” And they don’t want to entertain the possibility that sometimes your body just craps out, and you’re left with a disease that is at best tolerable, at worst a huge PITA and a heavy weight tied to every moment of the day. Forever.

And you know what, fine. If they need to think that, that’s their business and I could squawk at them all day long about not blaming the patient or the actual science, and deep down they’re still going to be like, “Yeah, wellll…you’re fat and diabetic so I don’t really believe what you’re saying, okay?”

And at some point, you need to know when to shut it down, because in the end it doesn’t matter what these people think. These people are not in control of your spirit or your happiness. So don’t let them be.

At least, I’m going to try not to.

Rc

Seeking opinions

Hi everyone!

So, our last #dsma chat got me thinking, I really want to do something special for World Diabetes Day this November.

For those of you who don’t know, I’m currently enrolled in a pre-med, postbacc graduate program. This translates to, all of my classmates want to be doctors or dentists, and we’re in grad school.

So here’s my thinking. Grad students (well, most people actually) love free food, and since diabetes affects all aspects of a patient’s health, I figured if anyone should care, it’s my class. So for WDD I was planning on getting a big basket of granola bars (or other non-perishable, kind of healthy snack) from Whole Foods and put a little sticker with the blue circle and “WDD” on it. I’d also have a little sign explaining it’s WDD with a link to IDF’s site.

So, here’s where you come in. I got feedback from a couple different people. One person says it’s a great idea since diabetes awareness isn’t widely publicized, and is optimistic that people would be interested. Note, he has Type 1 diabetes.

The second person said it was sort of a weird thing to do, and could verge on preachy/annoying. Paraphrasing, “If someone came in with breast cancer granola, I would think that was weird unless I was at an event for breast cancer. So, this could be weird.” Note, this person does not have diabetes.

So now I’m torn. As much as I want to be an advocate for the community I’m worried about coming off as preachy and annoying! What do you think? Weird, or go ahead and do it?

Rc

30 Things

I learned that this week is Invisible Illness awareness week! Thank you to my fave badassmatic for bringing this to my attention! :)

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: I’ve lived with diabetes for over 4 years and a lifelong chronic form of depression called dysthymia.

 
2. I was diagnosed with it in the year: I was diagnosed with diabetes in 2009, dysthymia in 2011.

 
3. But I had symptoms since: I’d have to say I had symptoms of diabetes for about a year before I was diagnosed that gradually got worse right before I was diagnosed. I’ve had issues with depression since I was a child though.

 
4. The biggest adjustment I’ve had to make is: My routine. My days were very open ended in the past but now I must adhere to a schedule to make sure I can best manage my blood sugars.

 
5. Most people assume: That I did something to give myself diabetes. I have Type 2 diabetes with atypical symptoms, particularly a very low “Type 1″ level C-peptide. This means I’m insulin dependent, and people think that because I take insulin means I’ve been unsuccessful or unwilling to change my lifestyle to manage without it. They’re dead wrong.

 
6. The hardest part about mornings are: Having to test/log/carb count/bolus/take pills/log my food/shower/walk dog/do makeup/etc. when I’m in a time crunch!
7. My favorite medical TV show is: This is so obvious, but I love House!
8. A gadget I couldn’t live without is: Obviously my glucose meter, but my iPod Touch has been a huge help with actually getting myself to log my blood sugars (thanks mySugr!) and my moods!

 
9. The hardest part about nights are: The discomfort if my blood sugar is high or the fear of going hypo. I’ve had really severe nocturnal hypos that almost left my unconscious. Sometimes I can’t shut my brain off, so actually calming down enough to fall asleep sometimes is a struggle.

 
10. Each day I take __ pills & vitamins. (No comments, please): 10 & +/-5 injections
11. Regarding alternative treatments I: I think taking care of your mind is just as important as your body. If you do well with meditation or acupuncture mentally then it will have a positive impact on your body. But I don’t think these things will treat your condition specifically.

 
12. If I had to choose between an invisible illness or visible I would choose: I would choose invisible. As frustrating as it is to be passed over because I might not “look” like anything is wrong, we live in a society where you are judged by your appearance and apparent ability. Which is a sad thing.

 
13. Regarding working and career: I am working toward a career in medicine, but I fear that there might be some specialties (read surgery) where I’m limited because of my diabetes.

 
14. People would be surprised to know: I didn’t get it by eating Snickers bars all day! LOL, okay but really, they’d be surprised to know how much work really goes into this every day, all day. It’s not just “avoid sugar and bread and you’re good.”

 
15. The hardest thing to accept about my new reality has been: I will never be able to approach food or exercise the same way. Every meal is a math problem and every workout is an exercise (tee hee!) in emergency preparedness.

 
16. Something I never thought I could do with my illness that I did was: I don’t have a really good answer for this. I haven’t done anything scary yet, but I do worry about traveling on an airplane with an insulin pump (if I get approved for it eventually).

 
17. The commercials about my illness: “Accu-chek Nano, you’re the one I chooooose!” Now it’s in your head, FOREVER.

 
18. Something I really miss doing since I was diagnosed is: This is going to sound so petty, but I really miss Halloween. I miss having a big bowl of candy on the dining table and swiping a couple every now and again without the constant thoughts of how high my blood sugar is going to go. OH and I miss just being able to go in and take an exam without having to worry if my blood sugar is too high so I fall asleep or too low and I can’t focus.

 
19. It was really hard to have to give up: Honestly, having diabetes doesn’t mean that you have to cut stuff out of your life but there are certain things that just aren’t worth the roller coaster. I am a LOVER of fruit juices, but alas, it’s hard to justify bolusing for 30g of carb in a beverage (that isn’t a pumpkin spice latte ;) )

 
20. A new hobby I have taken up since my diagnosis is: Cooking. I’ve always enjoyed cooking but needing to rework some recipes has lead me to experimenting and really loving it!

 
21. If I could have one day of feeling normal again I would: One of two things, I would go on the longest most exciting hike of my life without being scared of going low. Or the exact opposite, I’d sleep in and watch movies with B without worrying about going too high.

 
22. My illness has taught me: Life isn’t supposed to be fair. Not in a bad way either! Some of us are dealt different challenges, and it’s up to us how we handle them. It’s normal to feel great sometimes and not-so-great other times, but it’s important to realize the struggle makes us strong. Our bodies and health are at the forefront of our minds all the time, and we do that while being students, parents, spouses, professionals, etc. That’s amazing!

 
23. Want to know a secret? One thing people say that gets under my skin is: “Oh you do know you don’t need to take insulin for Type 2, right? You just need to change your diet.”

 
24. But I love it when people: Ask questions because they really want to learn. I don’t mind the opportunity to educate and dispel some myths, even if it’s just one person!

 
25. My favorite motto, scripture, quote that gets me through tough times is: I have a feeling this is a common one but the Serenity Prayer is one that I keep at the back of my mind at all times. I am not religious, but the message is one I need.

God, grant me the serenity to accept the things I cannot change,
The courage to change the things I can,
And wisdom to know the difference.

 
26. When someone is diagnosed I’d like to tell them: It gets better. It doesn’t get that much easier, but you get used to it. But, don’t live in denial, you MUST adapt to stay healthy. And staying healthy is WORTH IT.

 
27. Something that has surprised me about living with an illness is: How others are offended or frightened by the sight of illness. People are genuinely uncomfortable with the fact that others need to inject insulin or prick their fingers to maintain their health. Or even if you battle depression, people don’t want to hear about it.

 
28. The nicest thing someone did for me when I wasn’t feeling well was: Once when I was having a bad low in class a friend of mine SPRINTED to the vending machine and brought me some lemonade as soon as she saw I wasn’t all-the-way there.

 
29. I’m involved with Invisible Illness Week because: It applies to me, it applies to my family, it applies to my friends. It’s time we support each other in their struggles, no matter what they are.

 
30. The fact that you read this list makes me feel: Grateful and delighted, thank you! :)

Rc

Request Denied

Today I received a letter from my insurance company letting me know that they will not provide coverage for an insulin pump as it is not a medically necessary device for my condition.

So, until I have the time, energy, and emotional fortitude to take them on, I will have to do without.

I suppose that settles it.

Rc

Procrastination

Like a lot of people – dare I say most people – meeting a challenge or an uncomfortable situation head-on doesn’t come naturally to me.

Not at all. It sucks.

My natural state is stressed out. It’s not great or healthy, but it’s just the way I am and the way I’ve always been. I’m that one person who is probably like one step away from a serious grump fit.

So naturally you can imagine that anything that requires a bunch of work (that isn’t for school) or talking to strangers is just going to be the worst. It’s just adding more weight to the already super heavy pile of stressors that exist in my life. Which is mean to my brain, and you should never be mean to your brain.

My latest thing? Insulin pumps.

It’s been a few months since I’ve been officially “diagnosed” as insulin dependent. I’m currently on MDI, which is fine, but not perfect. I know I’ve avoided doing certain things because I fear a hypo, and  I’m getting tiny knobs of tissue at certain injection sites that are absolutely excruciating if I try to inject. Gross.

Note to self: rotate your sites more. Like, really.

I do a minimum of 4 injections a day, but sometimes up to 7 if I’m having a crap day full of high blood sugars.

So I decided over the summer to look into pumping in earnest. I started grad school this week, and I figured back then it would be a good idea to start pumping because school is a stupid place for rigid medical regimens. I contacted company after company and used a fax machine more times than I’ve ever even thought about this dinosaur piece of technology.

I got answers about cost, insurance coverage, user friendliness, all kinds of stuff. Eventually I narrowed it down to one pump, the Asante Snap, that I wanted to demo and I let my CDE know that was my plan.

Over a month ago.

I never scheduled the demo. I never called the pump rep who has emailed me multiple times asking to get in contact.

And I feel really guilty about it. I’m scared.

I’m scared I won’t be able to afford it. I’m scared I’m going to lose coverage for it once I get kicked from my dad’s health insurance. Lots of insurance companies are not pump-friendly for Type 2s. At least not without a major battle, which I simply do not have time to fight right now.

I’m scared of having to spend lots of time learning how to use it when I should be studying for my grad classes.

I’m scared of even getting on the phone with the rep to set up the demo with my CDE.

I don’t know why I’m so apprehensive and why I’m throwing up all these reasons not to do it.

Sometimes growing up means you have to make decisions for yourself, but a small part of me wishes I was still a kid and this issue was decided for me.

Rc

Type 2 Diabetes: The College Years, Or How I Ended Up in a Car With My Roommates and T-Pain’s Backup Dancer

One of the cooler things I did in college. I managed to stay awake through this lab.

One of the cooler things I did in college. I managed to stay awake through this lab.

Going away to college is always going to be one of the most interesting events in our lives. Suddenly we are thrown into this crazy, new situation that’s exciting and terrifying all at once.

All of a sudden no one is going to tell me what to eat, where to go, what time to get there. Damn, we feel so grown up. If I want to wake up at 2 PM and eat a Snickers bar for breakfast, then I’m going to effing do it, and who’s going to tell me no? You? You just wandered in here at 4 AM high as hell with a bag of McDonalds apple pies.

Yes, I’m still awake at 4 AM. I’m on Facebook instead of writing that chem lab report. I think it was another IR spectroscopy lab. Whatever. I’ll do it an hour before class.

That was when Facebook was still interesting enough on its own to peruse for hours.

I don’t give a shit, I’m going to eat Hot Pockets for every meal today. You know that shady hookah bar downtown? Let’s go, I know it’s a Tuesday night and we have a quiz in the morning, but it’ll be fine. You brought vodka back from that frat party in a Ziploc bag? Sounds legit. (True story)

For one, glorious school year I got to be that college kid. That stupid, reckless, naïve college kid.

Okay that’s not all that I did, I did actually go to class and do homework, but that’s not that interesting to talk about. I can send you a myriad of proposals, literature reviews, research papers, and badly written poetry if you do want to talk about it.

And to be fair my experiences were definitely not as reckless or extreme as some of my classmates, but nowadays I think eating French toast with a side of fries and drinking OJ at 2 in the morning is pretty reckless.

Freshman year of college was the last time I was free, maybe the only time I was free. I was away from my dysfunctional and difficult home life and, to my knowledge, had no health problems. The world was a bigger place back then.

I didn’t have to test my blood sugar every few hours. I didn’t have a box of pills to take every day or give myself, sometimes very painful, injections several times a day. I didn’t have to be stressed about the fact that medical expenses and the need for health insurance would chain me to my parents until I turn 26.

I had dreams, I made plans. I had a very real attachment to that idea of what things were going to look like in the next 5 to 10 years.

As you can imagine getting diagnosed with diabetes was not part of that plan. Getting diagnosed with Type 2 diabetes was DEFINITELY not part of that plan. Honestly, I figured I might develop it someday. I knew the odds were against me with my family history, but damn 18? Fresh out of my first year of college? Good lord.

And I know, children with Type 1 diabetes will eventually grow up to be young adults in college with diabetes. Having screwed up blood sugars in college isn’t new.

But there’s something kind of depressing about having that one type of diabetes no one else on campus had. I knew some Type 1s. My boyfriend knew them all somehow.

But it wasn’t really the same. I still felt alone sometimes. I didn’t take insulin yet so when I had a high blood sugar I had to go for a run, drink a liter of water and wait. I had to simply stop eating most sources of carbohydrate since I had no way to prevent a spike.

Emotionally it was difficult. I felt like I had something really shameful, something that I needed to hide. I just couldn’t bring myself to be open about it since it wasn’t as “normal” to have Type 2 as it is to have Type 1 at such a young age.

Now, I get it, it’s not really normal or better or worse to have any kind of diabetes, but back then I still had some weird thoughts about the whole thing. I was new to the game.

Also, it was really embarrassing to tell classmates that I had the type of diabetes their grandpa/grandma/uncle/mom/cousin has.

Yes, that one, the one who had his leg amputated and then promptly died. Oh and they went blind. And their kidneys LITERALLY fell out. And they loved that sugar free chocolate you get in those plastic bags near the pharmacy counter in the grocery store. No I don’t want some, thank you…

Sometimes it was rough, sometimes my blood sugar would stay in the 400s and I’d be falling asleep in lab, hovering precariously over the fetal pig I was supposed to be dissecting . Or in class, falling asleep in the FRONT row. It was always the days I decided to sit front and center in my 20-person class that my body would decide it wanted to spike reaallllyyy high, no matter how few carbs I had that day.

Thankfully as I start grad school I have insulin to help keep everything steady. No such luck back then (no one thought to test my c-peptide I guess).

So what have I learned?

Well, aside from a load of plant bio I will never, ever use (if I’m lucky), I learned that you get through it. You’ll make mistakes along the way. You’ll deal with some pretty shitty circumstances, but you will survive. You will learn that it’s risky to eat cereal (or any really complicated bolus-y food) on the morning of a big exam, or that banana smoothies you can’t bolus for aren’t a good idea for a study snack.

Trust me about exam-food. I fell asleep during my World Civilizations ALL ESSAY midterm. It was kind of the worst.

You will also learn that there is living to be done OUTSIDE of diabetes. Sure, things are complicated and you have to manage to test your BG, get your workout in, count your carbs, take your meds, blah, blah, blah, but you’ve still got a ton of awesome experiences to be had. You can study abroad, you can go out for the intramural field hockey team, you CAN be a college student. You’ve just got to manage it a little differently.

Maybe go easy on the pizza and beer.

Rc

Oh right, T-Pain. Well this has actually nothing to do with diabetes since this happened my freshman year before my diagnosis. Sorry for the bait and switch.

One weekend T-Pain came to my university and did a show, and I went with my roommate. Because who turns down a free concert? Seriously.

There was one backup dancer that everyone was really interested in, he was topless, had clown makeup on, and was totally ripped. And my roommate was totally enamored. After the concert she SOMEHOW gets his attention, and he, she, a friend of ours (our future roommate), and I ended up in her car. Driving around the night, listening to his tales as a backup dancer. I’m not sure what happened after I decided to get out of the car, but I guess it’s one of those things I’m better off not knowing.

College is a crazy ride man.