Where has the time gone?

Oh my goodness, has it really been almost a year since I’ve updated? Yikes.

Well, in a little less than a month will be my 6th year post-diagnosis. So much has changed, and so much hasn’t. I’m scheduled to see a brand new endocrinologist in a couple of weeks. Unfortunately the one I was seeing (who was amazing) has cut back on her practice so I was seeing her PA, but at some point you realize that it’s time to change gears. My self care has been lagging for over a year now, and I think it’s time to start a new chapter.

In other news, I’ve finished grad school! I graduated in December with my Master’s degree and I couldn’t be happier. And, after years and years of planning, I am finally applying to medical school! I’m quite a bit older than the “normal” pre-meds out there at this point, but I feel like I am finally ready.

So, here’s to the beginning of a new chapter. Let’s hope it’s good.

Rc

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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

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

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. (“You” meaning my roommate. This is a true story)

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. (Another 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.

What the Eff are you doing here?

Today I had the privilege of attending an ADA workshop teaching potential advocates about diabetes and how to share this information with their communities. When I saw the email about this, honestly I was excited. I was like, YES, that is what I want to do. I want to teach people all about diabetes, I mean, diabetes is a huge part of my life and it’s something I like to consider myself a bit of an expert on.

I’ve always been pretty clear during my interactions with the DOC about who I am. I’m 22, I have Type 2 diabetes, I was diagnosed at 18 years old, I have a very low c-peptide that so that means I’m also insulin dependent. I’ve struggled with weight and body image issues my entire life. I want to be a doctor one day, and have done the pre-medical coursework while trying to balance life as a newly diagnosed diabetic. I’ve BEEN there. I know what it’s like to feel like a failure on so many different levels, to be overwhelmed, and to triumph in the face of it all. Sometimes I have bad days, sometimes I have good, but I’ve been there. Who better to talk about diabetes to my community? I figured I was a perfect fit.

When I say my community I mean people my age, people who might not ever think about their health because they’re young and invincible. As a speaker I pictured myself at the community college or my university sharing information and experiences.

So I RSVP’d.

Now, I’m sure I’m not alone in feeling self conscious about my weight. I’ve been honest, I lost a tremendous amount of weight before and after my diagnosis, only to gain quite a bit back after starting insulin therapy on top of a long bout of burnout where I getting out of bed in the morning was enough of a struggle, let alone counting carbs.

The first thought I had about this was “I am overweight. What the hell do I think I’m doing, going to be trained to speak to people about being healthy and with diabetes.” I didn’t feel worthy to be an advocate, because I felt less like the example of a successful PWD, and more like the stereotype someone thinks of when they think diabetic.

I almost didn’t go.

Standing in front of the mirror, wishing my shirt covered more of my upper arms, wishing I were about 10 lbs thinner, I almost didn’t go.

But I did.

I got lost, as I usually do. For an hour. In 90 degree heat and humidity. But I made it, sweaty, disgruntled, and still self-conscious, I made it.

Now, onto the actual workshop. Overall I did really enjoy the speaker and thought she was great! But I still had some little brain-twitchy, nagging thoughts and feelings going through the PowerPoints.

Nagging thought 1: This information seems a bit dated or sometimes not entirely right. For example choosing skim milk instead of whole milk. I personally take soy, almond or 2%, but never skim or nonfat dairy products because my blood sugar just really doesn’t like that. But that’s anecdotal, and I totally get it, YDMV (your diabetes may vary). Also about cholesterol re dietary fat, saturated fat, etc. There was a slide saying that coconut oil is a bad fat, which I’m not sure is true. In case you didn’t know there is a bit of a controversy as to whether or not eating saturated fat actually messes with your cholesterol. It seems that past studies are inconclusive at best, but I’m not an expert on this issue, please refer to PubMed or your favorite scientific journal article database to learn more.

The thing is, I had to remind myself that the goal of a workshop is not to disseminate the newest research. Which as a science-nerdy type of person is hard for me to remember. The point is to give people information on some better (and realistic) choices they could be making regarding their health.

Nagging thought 2: These PowerPoints seem woefully incomplete. Okay, this one I asked about. Kind of dickishly I admit. Another girl there introduced herself as a pre-med college student, so I figured that gave me license to go “Oh hi, I’m pre-med like the other girl, but also I’m a grad student at *insert prestigious place* in biomedical sciences.” What? No one cares. God me, what’s wrong with you. But I felt like I had to JUSTIFY myself. Like, I have to tell you how educated I am because I’m fat and Type 2, and I NEED you to know that I know science, and I didn’t try to do this to myself. That in itself is kind of effed up.

The point of my question was how much “dumbing-down” do we need to do? Don’t get me wrong, I really don’t mean this in a rude way, but my background is in science, and I had to memorize stuff like insulin synthesis and gluconeogenesis for biochemistry, I wrote lit reviews on the effects of insulin resistance on brain function, I’ve researched the hell out of this condition. In general, I like to think I know what the hell I’m talking about. And of course the ego monster in me wants everyone to know it too (sorry…). The speaker had a great answer for me though, although the slides seem scant to me, to someone who has no real background knowledge in general taking-care-of-themselves-ness this is huge! They just learned that you can’t just count sugar, but total carbs. They don’t need to know about gluconeogenesis. It’s hard for me to imagine not having this wealth of knowledge about diabetes and human biology, but I have to remind myself that not everyone is as fortunate to have the health education I have.

Also, I am NOT a HCP, and she said to me that it’s not my job to give medical advice. Point taken. But I still felt like there were things that should have been said. For example, there was nothing differentiating Type 1, Type 2, LADA, MODY, etc. I get that people don’t give a shit about other, rarer types of diabetes, but at the very least say you’re trying to prevent Type 2. The welfare of children with Type 1 diabetes is in the hands of others when they’re away from home, we need to educate people that these kids can’t prevent their diabetes, and it is different. And that brings me to the prevention aspect.

Nagging thought 3: You really shouldn’t have said you were young and Type 2, and what the EFF are you doing here? During intros we were asked why we wanted to be a presenter. Well, naturally, I said I’m a young T2 and I’m super passionate about it and want to share. But then came the slides. Oh the slides. Let me make this clear, the presenter was great, she herself was T2, the attendees I assume are nice people, they didn’t really talk to me much. So the weirdness I was feeling was probably all in my head.

Much of this discussion was about PREVENTING diabetes, as well as living with it, but MOSTLY preventing. Okay, why the hell am I here? I already have diabetes, no one is going to want to hear me talk about preventing diabetes. I even have Type 2, the kind you’re supposed to be able to prevent! Well, here’s the thing, I really thought there should have been something touching on the fact that many people might not be able to prevent diabetes if already diagnosed with pre-diabetes. There are a lot of pre-diabetics that have already lost beta cell function, so while it IS about living as well as possible, it’s still possible that they will be diagnosed with diabetes. Also, I’ve read newer papers detailing how pre-diabetes is probably just diabetes. Someone there said they were diagnosed pre-diabetic, but they’re getting rid of it. And I don’t know if I can fully commit to telling an audience that if you’re diagnosed pre-diabetic that you can “get rid of it”. Sometimes switching to brown rice and working out isn’t enough to keep your beta cells alive! But maybe I’m wrong, it’s very possible I’m veering too close to that “you’re not a health care professional, you don’t give medical advice” line.

But I still felt embarrassed. I did catch a couple glances in my direction as we went through the “why do kids have Type 2 now?” slides and the “lose weight to prevent diabetes!” slides.

Okay. I get it. I’m fat. I’ve got diabetes. Let’s just stick the kick-me sign to my back and get it over with.

I think that teaching people about the dangers of being obese, of not moving enough, of not paying attention to your diet is PARAMOUNT. Of course I want to teach people about that, it would be wrong not to! I wish my parents knew this information when I was a child! But I can’t put my finger on it, something seemed missing from the slides.

The woman giving the talk made it a point that the goal should be to let people with diabetes know they are not alone, and that they shouldn’t feel guilty. I love her for that! But then again she is a person with diabetes.

The information on the slides doesn’t convey that sort of message. As someone with diabetes and with family members and an SO with diabetes, I know to tell people that message if I were the presenter. To say, “Hey, listen, diabetes is not shameful. It is a condition. You live with it, you learn to THRIVE with it. You are not alone.” But most of the people who were there learning to be “wellness ambassadors” were non-diabetics. People who don’t know what we know, don’t understand the emotional baggage that comes with diabetes, and probably never will as long as they’re lucky enough not to join the PWD club. Join is the wrong word, bound, gagged and thrown into the PWD club. It isn’t a choice. Even for those of us with Type 2.

So let me wrap up my novel. In summary the speaker and ADA staff were excellent, warm and friendly, the material was good, and I was just kind of an awkward mess. But hey, that’s who I am. Sure, I have some mixed feelings about it, but overall I am happy that there is an organization trying to go out there and teach people how to make better choices with their lives. The goal is to have a healthier, happier population. And that’s what matters in the end.

R.c.

Insulin Dependent

Every time I get blood work done my endo sends me a copy of the results along with any notes she has. These range from diet and exercise suggestions to little notes of encouragement like “A1c is improving!”. I love her for that. Unfortunately the most recent printout came with the most startling note so far, and it was only four words!

C-peptide low. Insulin dependent.

It’s been no mystery that my case has been somewhat of a question mark. I was diagnosed at 18 years old, no signs of antibodies, and mysteriously had my A1c jump from 5.3 to 9.2 in a matter of months with high BGs that didn’t respond to Janumet, Glimiperide, or mega metformin doses.

Despite the fact that I resisted the urge to make my meals consist entirely of Dunkin Donuts and Chef Boyardee – the college student diet of champions. Geez.

So I progressed to Lantus at bedtime. Then an NP had me try Victoza and took me off of insulin entirely. That sucked. A lot. I woke up with BGs in the 500s, I was nauseous, so I chucked that sample in the garbage where it belonged.

I’ve had a low c-peptide for a while, but the most recent blood test revealed that it’s far lower than it was. Like, way below the lowest normal number low.

I’ll admit it’s a bit of a relief to know that I wasn’t totally failing before, that my body is just being a jerkface like it usually is, but it does bring on a few more challenges. Like my T1 friends I have to BE the pancreas.

I think we should make t-shirts that say that by the way. Just a thought.

I have to take basal insulin and bolus insulin, and all the calculations that come with that. But like my T2 friends I still have to be very diligent with exercise and carb counting since I am still insulin resistant. And any T2 or T1 with IR can tell you, insulin resistance is a royal pain in the ass!

But, here’s the cool part, since my c-peptide is so low I might be able to make a case for getting an insulin pump! I haven’t started the process yet, so I’m not sure what will happen but I’m excited nonetheless. I’ve never met a T2 with a pump so I don’t know how successful I’ll be just yet. Also, I don’t know anyone in person with an insulin pump, so I’d love to hear what everyone thinks in the comments!

Where there is unity

“Where there is unity, there is always victory.” — Publilius Syrus

There is a discussion going around the community about a petition to change the name of Type 1 diabetes. I cannot do a better job than the others who have already written about this issue. You will find other blog posts detailing the merits and shortfalls of this sort of action. With regards to this issue, I can only share my own personal experience.

As a Type 2 diabetic I have felt embarrassed of my condition. I have felt anxiety and anger over what has been said to me, in person and online. I’m sad to say I’ve read many hateful posts on forums and other social media directed towards “my people”. The Type 2 diabetics. The stigmatized, the shamed. Many of these posts have been from Type 1s, or parents of children with Type 1 diabetes.

I can’t pretend, until I have children, to understand the turmoil it must bring to have a child diagnosed with a condition as involved, time consuming, and at times frightening as Type 1 diabetes. I can’t pretend to know the anger that comes when your innocent child has this constant burden thrust upon them. The frustration that comes when outsiders ask what happened, what did you do, to make this happen.

For that I am sorry and deeply sympathetic.

I can only give you my perspective. My own life since I was an 18 year old diagnosed with Type 2 diabetes. It is incredibly hurtful when people assume that this condition that you struggle to manage, and must live with every single moment of every single day is all your fault.

You should have eaten better. You should have lost weight. You should have done X, Y, and Z. YOU SHOULDN’T HAVE BROUGHT THIS UPON YOURSELF.

I have read posts from Type 1s on forums, saying how frustrating it is for them to deal with this stigma. This stigma that should only be reserved for us, the Type 2s. We are the perpetrators of our disease. They are the victims. Similar thoughts have been put forward from parents struggling with the ignorance of others.

No one deserves this stigma. Not even the overweight Type 2 struggling with self-care. Not the Type 1 child who is just trying to live their life. No one.

Whenever the idea of a name-change comes up I get a knee-jerk reaction. I am offended. I am hurt. I have done nothing wrong, why are they so embarrassed to be part of my community? This wasn’t my fault, why do I deserve these ignorant comments more than anyone else? I don’t think this latest petition is trying to insult or alienate the Type 2 community, but I cannot deny that I suspect some of those who signed it would like to see that happen.

I would like to share a short story about my boyfriend and myself.

We met in the fall of my sophomore year of college. I was fresh from a summer of learning how to manage my diabetes after being diagnosed in June. I felt alone. So, very, alone. Like I mentioned, I was so embarrassed. On some level I truly believed that I did something criminal. The second time I saw B he casually mentioned wanting a scone, and lamenting that he did not bring his insulin. I was so excited. I didn’t take insulin at the time, but I didn’t care, here was someone who had screwy blood sugars too! Immediately I told him I was just diagnosed Type 2 a few months prior. Together, B a Type 1, me a Type 2 we navigated the pitfalls of campus dining, our almost synchronized blood sugar testing before dinner dates, the long walks around campus, which were very romantic, but also functioned to help lower our blood sugars. We moved in together, built a stockpile of diabetes supplies. When it became apparent that I needed to start insulin therapy he was there for me, reminding me to take my Lantus at night, sharing his Humalog when I ran out. Together, we learned.

Pushing for a name change, at its heart, has divisive implications. But that’s a narrow view. It doesn’t matter what name we assign, the general public will hear the word diabetes and the same connotations will arise in their mind.

What matters is quality of life. For everyone with diabetes.

We need funding, we need attention, we need more research to better understand what is happening in our bodies. Only then will we be able to better educate the public.

Quality of life improves not only with better treatment options, more D-tech, but with camaraderie! A feeling of unity, and support. A feeling that you are not alone! We must stand united, because only together will we be victorious in assuring a great life for all of those with diabetes.

I hope you stand with me.

Rose

I wanted to edit this to add, the majority of people with Type 1 diabetes that I’ve met have been so completely welcoming and understanding. I love them all and have learned so much from them. It is a small, unfortunate minority that have expressed the negativity I describe above.

You may have noticed…

I realize that I haven’t been posting very often, and for that I apologize. Unfortunately I’ve been preoccupied with being in a post-graduation rut and studying for the MCAT. For those of you who know me from Twitter, the last year has been a bit of a struggle when it comes to self-care, both mentally, physically, diabeetically (I can make up words on my blog right?) and so on.

Updates:

-I’ve started a trial on Symlin to get my postprandial BGs to stop spiking so high. Spikes after meals, even as low as 15g of carb sent me soaring even w/ bolus insulin. It was one of the more startling things I discovered during my short time with the Dexcom.

-I’ve decided to try and eat grain-free during the week and minimize how much I eat during the weekend. I find reducing the grains and starches I eat makes me feel so much better, less heavy and bloated. Also, I feel more alert. Fridays are the exception, to keep myself from feeling deprived I’ve decided that on Fridays I can have one of whatever I want, and enjoy the hell out of it. Last week I chose a reasonably (read: not colossal) sized glazed donut, and was able to bolus, enjoy, and continue on. I think taking the time to sit and savor it with a mug of good coffee was much more satisfying than eating three of them. That’s something I want to remember, the feeling of enjoying something and not having to feel guilty about it because it was a controlled situation.

Right now my focus is to work on improving how I live day to day as well as studying my ass off for the biggest test of my life so far.

I’ll try to keep you posted.

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Love,

Rc

P.S. I’m considering adding a video portion to this blog. I’m not sure if anyone is interested, but I think there are some fun things you can do with video that you can’t with just text and pictures. If you have any ideas about topics I could cover please let me know! I’d like to think as a young adult T2 I have an interesting perspective to offer. 🙂