I don’t do easy.

I think our society, as a whole, places an unusual amount of value on the concept of “new beginnings.” Every single year, without fail, there are countless Facebook statuses proclaiming, “New year, new me!” and far too many images on Pinterest stating, “Nothing tastes as good as skinny feels!” and the like. (For the record, everything tastes far better than skinny feels, especially warm gooey butter cake… but I’m getting ahead of myself.) Ahem.

As a PWD (Person With Diabetes, if you didn’t already know), every day is a new beginning. I constantly find myself asking How am I going to make today better? I think about what went wrong the day before. I definitely think about what went right. I most certainly consider what controllable factors could play into my daily self-management, and I try to embrace the possibility of those inevitable uncontrollable factors. Over time, I have learned to expect accept the unexpected. It hasn’t been easy. But things that are easy aren’t always fun, are they? Cleaning the bathroom is easy, but it sucks, and I strongly question the mental state of anyone who just loves to clean the bathroom. Easy things also tend to be forgettable; they end up being items that we file away in the back of our mind to recall when we haven’t anything else to think about. I’ve never been able to accept “easy.” Call it Type A personality traits, perfectionism, just plain being obstinate… I just can’t accept easy.

I have, however, accepted the fact that diabetes and I were always meant to be. Had my pancreas not decided to be an unreliable, lazy freeloader, I don’t know if I would have ever developed the drive to go any farther with my life and career goals. It was most certainly not easy. I didn’t think I’d ever be able to count carbs or dose insulin properly, let alone make it through the night without dying. (All typical PWD fears, right?!) I still have days where I “quit being diabetic,” and my mother looks up from testing her own BG and rolls her eyes. I never quit for long. My parents didn’t raise a quitter. I realized about a year post-diagnosis that D and I were in it for the long run.

That was when everything started to make sense.

I learned how to keep going. I really learned self-advocacy. I learned that the fact that I cannot accept “easy” was not, in fact, a character flaw, but instead was a crucial skill that I possess. I took that skill and channeled it into my goals, and I set out to accomplish them. I start on a new goal next month: to become a damn good nurse. Diapathetic, RN, if you will, and thankyouverymuch. I don’t expect it to be easy but, then again, I don’t really do easy, now do I?

Burnout.

I wear out fairly easily.

It isn’t difficult, actually — I work two jobs and am putting myself through school, plus the whole “trying to have a social life” thing. You know, everyone has those days where the only thing that they can think is, “How long until I can get back in bed?” For me, that seems to be most days.

I think I’m getting tired of diabetes, too. I forgot to pack test strips on a little 2-day beach trip I took last week and, instead of freaking out and having my prescription transferred so I could get more or just buying enough to get by, I just guessed. (I did pretty well, actually, with only one major low, but that’s not the point…) I know I shouldn’t be doing that and maybe it’s just the vacation mindset, but I honestly didn’t care. I wasn’t even considering diabetes my first priority, and that’s kind of upsetting. This December will be my third diaversary, and I suppose a little burnout is to be expected, so I’m not too terribly worried, but the real question is: how do I re-energize the diabetic area of my life? I’m a little burnt out on everything right now, so maybe it’s a direct correlation situation, but it’s not great either way.

My endo asked me what my treatment goals were when I was diagnosed, and I could only think of one thing. “I want to live to be one hundred years old,” I said. And it still remains true — cure or no cure, I want to eventually be one hundred years old. I think it would be awesome to get that 75-year Joslin medal. Like, really awesome.

I just need to find a way to motivate myself to keep heading towards that goal. Maybe with chocolate. Yeah, chocolate.

I do like chocolate. 🙂

Baby’s First Steps

I don’t make New Years resolutions.

I think 12 months is an incredibly unrealistic time period in which to complete a goal. I have always been a procrastinator, so I have to force myself to set attainable goals. I feel like this is a skill that they should teach in school, because I could have benefitted greatly from knowing how to set realistic goals without the failure that inevitably precedes experience.

So, it is after great consideration and personal examination that I announce my first goal of 2013…

I’m going to run a 5K in April. 

I’ve never been a runner, like, I have never ever included running in the “things I want to do with my life” category, but I’m saying that I’m going to do it on here so I can’t go back on it. It should be interesting learning how to do this with the diabetes thing to contend with as well.

Please keep me in your thoughts as I take my first steps. It’s going to be interesting, I promise!

Carte blanche.

When I hear folks refer to life as a roller coaster ride, I can’t agree more.

Don’t get me wrong, I love roller coasters. FREAKING LOVE roller coasters. (I actually haven’t been on one in quite a while, but I’m fairly certain that I still like them A LOT.)

The only roller coaster I’m not crazy about lately is the one that my blood sugars sometimes ride. I had one day last week where I would be high, and we’re talking like 250+ high, here, then 2-3 hours later would have a low somewhere between 65-75. This happened no less than three times. Just another reminder that no matter how much I may think I have “control” of this disease and my body, I am clearly not the one making the choices.

On the other side of what “low” means in my life, a dear friend of mine has been going through some really tough times. She’s about my age, and just found out that she has Type 1 diabetes. It’s very surreal to watch this from the other side, because I think this must be how my family felt when I was diagnosed. Helpless. She keeps reaching out to me for support, and I am incredibly happy to give it, but it just feels so strange to be the one doing most of the giving in the support department. A part of me is pretty sure that this may be one of the reasons why my body decided to do whatever it did that caused my diabetes: I’m supposed to help others.

I can’t help, however, feeling a little sad for her sake because I know what’s coming. I know the frustration that goes along with “making it work.” I know what it’s like to have people that you care deeply about walk out of your life because they “can’t date you and the diabetes.” (That one really hurt.) I know what it’s like to have to tell your whole life story to your employer/coworkers because you’re paranoid that no one will know what’s going on if you have an extreme high or low, and I definitely know what it’s like to field ridiculous questions and have others give you tips about how to manage a disease they don’t have themselves.

But I do know something else, as well, and I hope I can impart it in some way: I know the incredible joy that comes with just living. It’s so easy to take everything for granted, and I know I did once upon a time, so much so that you can lose that sense of joy or forget to appreciate the things you have. I have so many “giving up would be so much easier” moments, but I have twice as many “boy, am I glad it’s today” moments as well.

Sometimes, the promise of a new day is just what you need. A new beginning. A chance to make it better. To be a better you.

Carte blanche.

Nice work if you can get it.

I am so done with night shift.

I’ve been on full-time night shift for over a year and half at this point, and I’m just tired. I know, I know, I should be tired, I work at night. But it’s more than that; my body is just tired. I’ve been having these weird inexplicable high BGs lately, like those but-I-didn’t-eat-anything-so-why-am-I-high kind of BGs. I think it might also be in response to the flu shot I received on Saturday night, but I don’t usually have this much trouble. I honestly think that my body is trying to tell me something by giving my work schedule a big EFF YOU, GTFO. My disease’s attitude is seriously getting out of control — maybe it needs a time out. (Wouldn’t that be nice, though?! Just for one day…)

So, long story short, I’ve applied for an internal transfer to become a per diem version of my current position, which would allow me to pick my own schedule (excellent), work while going to school (also excellent), and finally go back to day work (MOST EXCELLENT). I hope the that this works out, because I’m just ready. My main worry is adjusting my basal rates again — Dr. Z has me on a flipped schedule, so my highest basal is during the wee hours of the morning when I eat my mid-shift meal, and the lowest basal is during mid-afternoon when I sleep. I’m not one of those pump users that just adjusts her own basal rates (yet), so I’m nervous about going through the readjustment period again.

I’m also very nervous about giving up my health insurance. Unfortunately, per diem staff do not get the option to elect for health insurance (I’m not too too upset about it because my work’s plan is really expensive for someone on my salary). Fortunately, I fall into that group of young people who are now covered on my parents’ insurance until age 26 regardless of circumstance. I’ll be covered until August of next year, and by then I will know which nursing school I’ll be attending and can decide what the game plan will be.

I’ll definitely miss that flex spending plan, too. Oh well.

But I need to do this. Just another one of these life situations where my mindset is don’t care, this is what I want, it’s going to work no matter what. I’m so past accepting no for an answer.

I have accepted, though, after duking it out with the insurance company for the first time last month (that’s another blog post entirely), that if I don’t grow a pair and speak up for what I need from work, insurance companies, life in general… I’m not going to get it. Case in point: my manager is so happy that I’ve found something that may work better than the current situation. I wish every PWD was as lucky as I am.

Oh nice work if you can get it.
And you can get it — if you try.

Be well. 🙂

Wrong-o.

One of the things I remember the most about my diagnosis was how simple it was.

When Mom and I were finally put in an exam room and they started doing the barrage of tests that seems to come with every time I go to the ER (which is not often/which is why I just don’t go in the first place), I had a pretty good idea of what the result was going to be.

The back story: I had already been witness to two T1 diagnoses in my life. My mother was diagnosed in 1998 at the age of 36, and the older of my two brothers was diagnosed in 2001 at the age of 11. I remember the family education and long hospital stays that came with both. I remember how my mother was in DKA. I especially remember watching my brother practice injections on some poor innocent orange. The most crucial memory I have, however, is of the moment when my mother tested my brother’s BG for the first time, in the corner of our kitchen, and then crying when she saw the readout. It was on her own meter, and it was following a week of really erratic, disorganized, and aggressive behavior from a usually pleasant and well-behaved little boy. I think she knew what the result was going to be, but was hoping that her intuition was wrong. (It never is.)

9 years later, there I was, in the same position. Standing in the corner while the meter counted down, considering the possibilities. (I’d like to say that a thousand things were running through my mind, but all I can remember is being angry that Mom wouldn’t let me eat and I. Was. Starving.)

There were no tears for my diagnosis.

In fact, the PA in the emergency room didn’t seem to think that it was a big deal at all. He asked about family history, and then told us quite plainly that, “adults don’t get Type 1.” Wait, what?! Hm. They handed me orders to see my PCP in the morning, with a whispered urging from my wonderful nurse to “seek a second opinion because that guy doesn’t know what he’s talking about.” I owe him for his honesty.

I was reminded of just that when I read this article the other day: Wrong Call: The Trouble Diagnosing Diabetes, following a number of individuals who were told ridiculous things like, “adults don’t get Type 1.” Apparently I’m not the only one. Wow. And then I thought about this: since I had such a slow onset, how long would a true diagnosis have taken/how sick would I have become without my mother urging the doctor for more tests? I mean, I am grateful that my PCP had the foresight to give me a BG meter and the minimal education, but it felt almost as though very few even cared about me, the person behind the diabetes. There was virtually no education available for someone who was coming into the disease after 20+ years without it. I grew up with my brother’s and my mother’s diabetes, but I had no clue how to feel about my own. How many other people were in similar situations?

So, what did I do? I took to the internet.

It was there, through some digging, that I managed to find a handful of blogs by people living with diabetes. And not just people who had been diagnosed as children, but people who had been diagnosed as adults, who were having the same problems that I was! Those blogs led to me finding the DOC, a community that, in my opinion, is an absolutely necessary resource for anyone living with this disease in all of its many forms and manifestations. I am so so grateful for the wealth of knowledge available at my fingertips (my poor, abused, fingertips).

And then, the other day, I saw this video from the You Can Do This Project pop up on my newsfeed: We Can Do This: Vol. 1. I can’t believe that I’ve never seen it before (Vol. 2 is apparently forthcoming. Can’t wait!). It was like my own thoughts were coming out of someone else’s mouth. Maybe there is hope that there will someday be as great a wealth of knowledge for T1s diagnosed as adults as there is for the loved ones and caregivers of  T1s diagnosed as children. I was also reminded of why I write down my thoughts and talk about my disease whenever the opportunity presents itself: because I want people to know. It’s real, it’s here, and it’s mine. I live with it, and I intend on living with it for a long time. (Joslin 50-year medal, here I come!)

So that’s why I do this, sharing my thoughts and experiences: so that others can learn. Because, really, what is the point of having a community of like-minded individuals enduring similar circumstances if we can’t learn from each other? Here’s to the perpetuation of knowledge! 🙂

On complications and being cured.

I just rolled in from a really great cast party with my friends from Carmen, the opera I wrapped tonight. (Little known fact about me: I sing opera for fun.) I can’t even tell you how much wine I had, just that it kept flowing as long as we were laughing and telling stories, and that was basically from about 11PM until 4:30AM-ish. I was in a huge rush to get out of the house earlier, having taken a nap and put myself very much behind schedule, and I forgot the little pink bag that holds my D-supplies. Duhhh, stupid. I was slightly on edge all night wondering what my sugar could be, as I should have been. Thank goodness I wear a pump, otherwise I don’t know what I would do. That little thing keeps me so consistent; I love it so so very much.

Long story short, I just tested my BG a few moments ago, and it was 135. Wow, I thought. That’s not bad at all. I didn’t feel the need to bolus all night. Am I cured? I had a relatively good endo visit the other day; found out my A1c is 6.3, and my kidneys, liver, and thyroid are all in really good shape. Dr. Z couldn’t stop saying how happy he was with my progress, and it made me feel good as well. I mean, we try so hard to live normal lives and, yeah, your A1c/BG readings are just numbers, but just hearing that everything else is working fine made me feel so warm and fuzzy inside. I know I’m doing a good job (although, granted, some days are better than others), but it sure is nice to hear someone else say it as well. I may have a bum pancreas, but it seems like everything else is in good working order, and hearing that is music to my ears.

I don’t look forward to having complications in the future, but I embrace the fact that they may become an eventuality. I’ve already had one scare this year with a spot on my retina, which turned out to be nothing anyhow (whew), and that was enough for me. But I see the issues that my mother is having, and I see the issues that her cousin is having, and I wonder, what will be my experience? Dr. Z has assured me that if I keep managing myself as well as I am right now, I will have few, if any, complications. But there is always that what if — what if something does go wrong? What if I develop thyroid disease? What if my kidneys fail? What if, what if, what if.

This brings to mind another possibility — what if a cure becomes available in the near future? Will that be something that I will be interested in? Will I be so used to this lifestyle that I won’t want to go back to “the way things were?” Will I even remember what that was like?

I don’t like to think of my life before D because it was a really difficult/challenging time for me. I was kind of lost, in every sense of the word. I didn’t know what the heck I wanted to do with my life. At all. D came at just the right time, a time when I needed something to really live for. In a way, D saved me. It showed me how fragile life is, how easy it is to lose the things that you take for granted. But it also has taught me many things — how to be flexible, how to be understanding and, most of all, how to take care of myself. Because, let’s be honest, I’m the only “me” that I have. But the most important thing was that it showed me that the budding passion I had for nursing care wasn’t just a passing fancy. I finally understood that being a nurse what was what I was destined to do — because I needed to share my experience with others. My diagnosis was the push I needed to lead me down the road to my life’s work, and I honestly don’t know where I would be without D.

It’s so easy to think of a diabetes diagnosis as the end of the world — it certainly feels that way when you’re sitting in the ER and the nurse looks at you with sad eyes and you just know. I was the third one in my immediate family to go through that experience, and I never thought it could happen to me. But it did, and I’m grateful. So grateful. I do have days where I’d like to return to sender but, on the other hand, I also have days when I feel like Superwoman because I know that I’m strong, and that I can do this and, most importantly, that I am certainly not alone. I would be loathe to be cured of the one thing that has truly helped me find myself.

As I celebrate my 25th birthday and soon my 2nd diaversary, I find that I don’t really want to think about who I would be had things turned out differently. I just don’t. Maybe I’m in the minority when I say that I like my D life, but I don’t care. I wouldn’t have wanted things to turn out any other way. 🙂

On hope.

“We must accept finite disappointment, but never lose infinite hope.”

Martin Luther King said that. Talk about someone who understood finite disappointment.

I can’t even quantify the amount of disappointment that I’ve had to deal with this week. Relationship (still, I know, I’m working on it), work, school, life in general… in fact, the only thing that hasn’t been going horribly wrong is my diabetes care. For once in the time we’ve been together, D seems to be behaving itself when I need it to the most.

I want to write about hope today because I had a moment last night while hanging out with friends. Some asked me what time it was, so I pulled out my pump to look, and he says, “I didn’t know you were diabetic.” It cuaght me off guard because I was pretty sure that almost all of my friends were aware about D. I like to keep an open channel with folks mostly because it means less explaining when things go wrong. And they do, sometimes. “Oh yeah,” I said, “I’ve had it for a couple of years.” (I felt like a superhero revealing my secret identity.) He smiled. “That’s really cool.”

Whoa.

You’re right, handsome male friend. It is cool. It is SO COOL.

It filled me with such hope to know that I really am more than this disease. It is sometimes so difficult to see myself through the diabetes mess, but to know that someone saw me, in that moment, as just plain old me is so… refreshing. While I’m not ready to date again quite yet, I feel like this little moment of hope infused me with the strength to accept that others are going to accept me. Diabetes is a tough pill to swallow — believe me, I know. I can imagine that finding out that the person you are romantically interested in has D is almost like what we went through at diagnosis. But I also hold out on the hope that there is someone out there who will accept my D as a part of me because, well, it is just that. I’ve said it before: love me, love my diabetes. (Like you have a choice, anyway.) We’re a package deal. No promise that it’s going to be easy, but we’ll make it.

I’m going to go watch (read: cry over) some more videos over at the You Can Do This Project.
If you’re living with D yourself, or love someone who does, you need to hear what these folks have to say.

Life is beautiful. 🙂

On breakups and eating habits.

My numbers have been really great lately. Like below 200 great. I should be happy about this, but I haven’t really felt like eating a whole lot lately, so my boluses are super-accurate (read: non-existent). On my best days, I usually stick to a very low-carb diet, only consuming carbs that come from natural sources like dairy and fruit. I’ve cut almost all bread and bread products out because I have entirely too much trouble bolusing for them, and the way they spike my blood sugars is simply unreal. Sometimes it feels like no amount of insulin infused at any rate will affect the spikes, so I just do without. It isn’t a hard diet to follow, really; I’m not a big carb eater as it is. I have been known to splurge (as we all have at some point, right?), so there’s always a little wiggle room. Sometimes I miss the way I used to eat pre-D, and then I have to take a moment to thank my pancreas for all of it hard work in the past.

The other thing that I think affects eating habits is who we hang out with. My boyfriend and I were big foodies, like $160 at a fancy restaurant was a good night out. Since we broke up about a week ago (he gave me some BS excuse along the lines of “I don’t love you anymore” which, to me, sounds a lot like, “our relationship is great but I like being single better”) I just haven’t been eating… anything. The motivation to make food or go out and get food just isn’t there. I wouldn’t say that I’m depressed, necessarily, just really really sad. I liked this guy. A lot. I thought on more than one occasion that he could be it for me, and that I would be okay never dating anyone else. Needless to say, I’ve been pretty sad as of late. It’s been a real challenge for me to want to check my BG and do any daily diabetes-related things. My ex was really involved in my D-care, so that’s adding another level to the situation as well. The ways in which diabetes affects my life continue to amaze me — this is my first breakup post-diagnosis that had nothing to do with D, so that’s refreshing, but now there’s the prospect of having to re-enter the dating world, which is something that genuinely terrifies me. My mother says that D shouldn’t even come up while dating, but it does, and it will. I mean, I wear a pump for crap’s sake. It’s there. It’s in the open. Anyone that I date is also going to have to know about D because it is a really crucial part of what makes me who I am — it’s just as important to me as my family or what I do for a living. 

I guess I still have a lot to learn. 

Find a friend.

It seems the most popular thing about Diabetes Blog Week is that it helps us find blogs we weren’t reading yet and connect with some new blog friends.  With that in mind, let’s kick off Diabetes Blog Week by making some new connections.  Think about the d-blogs you read that you think we may not know about and introduce us to one that you love!!  Let’s all find a new friend today!

Truth be told, I was introduced to all of the diabetes-related blogs by other people in the Diabetes Online Community, so I have a really good feeling that I read just about the same things as everyone else doing D-Blog Week. Instead of being redundant, I’d like to give some props to my favorite Facebook group.

You all know what “memes” are, right? Those internet graphics that everyone seems to be posting, sharing, and maybe giggling over? Well, Type 1 Diabetes Memes is a group started by two young Type 1’s, and they take pre-existing memes and make them d-funny, and sometimes even post original ones. The cover is an image of a Monopoly board with spaces saying things like, “Visit to the Endo” and “Chocolate Cupcake.” (Although, it should probably be the Game of Life and not Monopoly, when you think about it.) 2500+ people like the page, and I find it refreshing that so many of us on Facebook alone just need a laugh from time to time to escape the madness.