Almost there

I feel the need to declare something here. I have never ever been more excited to do anything in my entire life as I am to graduate high school. Everything else pales in comparison. I will finally feel FREE, for good- not just a few summer months. And to anyone who likes or liked high school (I apologize)- you boggle my mind, but more power to ya I guess? I never have and, in fact, it has become increasingly more unbearable in these last few months. I will cry (of pure and total joy) the day I put it all behind me. Declared. Done. That is all.

As for other news.. Tomorrow I’m going to volunteer training because I will be working at the JDRF Promise ball. I am really excited about this event, and I think my friend is going to come with me so that makes it even better. After that I am headed to Pittsburgh for the weekend to check out a college, and hopefully make my decision. I am getting anxious as the May 1st deadline approaches, but it will be a huge relief when I finally decide. My 3rd marking period grades also came today- I picked a really inopportune time to act like a teenager. So, consequently, I’ve got a lot of cleaning up to do in this last month of school. It’s strange to think that one day I will look back at this time and think how silly I was- now I just wish it were not so. I still have a lot of digging out of my own to do but, as the summer approaches, I am finally beginning to feel a bit more capable of doing so. Honestly I am just emerging from a rather depressed post-Ireland week and accepting the fact that there are not really any stars when I look up around here, and I can’t exactly expect to see lambs everywhere (or really, anywhere). I’ll get back there, though, and hopefully soon… and at some point (I hope) for a more permanent stay. It was an amazing trip, and I’ll make a more thorough update about it soon. I wrote about every night, but my makeshift journal is still with my friend so I’ll wait until I get that back. The other day, when my Dad got off the phone he said to me “Uncle Anthony said he wants a blog, he said you’ll know what that means.” Now I can assume one of two things here: One-my Uncle Anthony knows my blog and wants me to update on Ireland (and if so, Hi Uncle Anthony!) or my Uncle Anthony calls e-mail a blog in the same way my Dad calls his email his website, and wants me to e-mail him pictures from Ireland (which, I swear, one day I will finally do). But, either way, an update is coming soon!!

Type 1 Diabetes Awareness Day

Type 1 Diabetes lay in wait on my 8th birthday and made its appearance, setting up for permanence, about a month later. It was there on my first day of third grade, on my first day of middle school, on my first day of high school, and it will be there when I graduate. It was there the day my grandfather died and, because it was there, it gave me more than grief, but a dose of reality not many other 9 year olds would be forced to realize. It has been there through tears, smiles, and laughs- and has caused each of these in its own turn. It nudges me on the shoulder every time I eat, telling me to weigh the factors- carbs, activity, stress. It wakes me in the night sometimes, clammy and cold with a low blood sugar. It’s a balance act and I am relatively at it’s disposal. I imagine and hope for a future without Type 1 Diabetes, but don’t count on it. I come nearer each day to reaching 10 years living with this disease- another milestone among many.  Each day it is a focus I never really asked for, but have learned to deal with. Each day I add more holes to the tips of my already sore fingers, draw more blood, and try to consider the unpredictable. Every two to three days I change my insulin pump site. Every day there is a chance that something will not go as planned.

I have grown up with type 1 diabetes. People came and went, friendships ended and new ones began. I learned that it wouldn’t always be easy. I learned that people would rarely understand- but when they did, it was the biggest comfort in the world. After I came through security at the airport last week, the employee on the other side of the metal detector smiled at me and told me his sister had an insulin pump, too. I felt safe.

I, along with many others, have felt the sting of a needle and the hurt of misunderstanding, miscommunication, and ignorance. I have felt the pain of knowing there may not be a cure in my lifetime, and the strength in knowing that maybe I am better because of it. I have feared what the future could bring if I made too many mistakes. Mistakes like a miscalculated insulin dose, an infusion site left in too long, a high blood sugar let go for too many hours. The mistakes that I could bounce back from today, and tomorrow, but maybe not in years time. And then I vowed to do my best not to make those mistakes, doing the best for myself. I revealed my disease to some, but kept its details and emotional effects inside. And then I realized it wasn’t helping anyone, so I wrote. More than needles, finger sticks, scars from infusions sites, and doctors visits… lack of understanding and insensitivity hurt the most. A student proclaimed to the class I “was emo” because I “cut myself”, after I checked my sugar. A health class told me diabetes was my fault, and there was a grim prognosis- amputation, gangrene, heart disease, and an untimely death. The media does little to distinguish between Type 1 and Type 2 Diabetes by just saying “diabetes”, and (referring to type 2 most of the time) attaching words like “obesity”, “sedentary”, and “prevention” to it. I sometimes feel like I have been labeled, and fear that just saying I have type 1 diabetes is not enough- that these words may be attached to me too for lack of education. I was an active 8 year old, rapidly losing weight when I was diagnosed- and nothing I did could have prevented this. No amount of diet or exercise will ever cure me.

So today I write for those who may not wish to speak just yet. I write for those who have not yet heard, and hope that they will listen. Most of all I write for understanding- because you may not see this disease, but I and many others feel it every single day. I wonder how many more milestones will pass before there is a cure, or if I will see it. Type 1 Diabetes cannot fall into the background and, so as to avoid this, we must educate. Today, as we raise our voices, we are part of the cure.

New endo, and other updates.

I wanted to update, because I’m leaving for Ireland tomorrow. I can’t wait!! So I’m taking time out to write a bit before I tend to the 10million things I still have to do … (do wash, pack, find adapters, get all my diabetes stuff together, buy some last minute essentials, call the airline and let them know I’m packin’ syringes, hopefully get a short nap, etc.) All this and I’m running on 3 hours of sleep.. eek. Anyway, I finally heard back from all my colleges. In case anyone is interested- I got in to all of them (U Pittsburgh, James Madison, U Delaware, West Chester U, and U Vermont) except Boston U- which is fine cause it wasn’t a top choice anyway, and Cornell half accepted me. They offered me a guaranteed transfer, so that if I get at least a 3.0 and nothing lower than a B in my required classes wherever I go for Freshman year, then I have a spot secured for Sophomore year. I thought that was pretty cool, and much more than I expected. I like it because it’s non-binding so I have another option and don’t have to be totally committed to it. I’m majoring in Nutritional sciences, even though I swear I switch between that and some English-communications-journalism type major literally every day.

Anyway, other than that.. yesterday I had my first appointment with a new endo. I’ve been going to my primary care physician and my CDE for about a year now instead of an endo because I haven’t really found one I like yet. The new one was nice enough, but I guess I’ve come to accept that these appointments are more of a formality now, so that there’s someone to call if anything bad should happen or if I need a new prescription. you know… that kind of stuff. I’m not easily satisfied with doctors, in fact I think I’m overly critical of them- but I’ve heard some pretty ridiculous stuff come out of the mouths of “diabetes experts” over the years, so I guess that’s to be expected. I fear for patients who believe that whatever the doctor says is true, because from past experience.. they could be following some pretty bad advice. Eh, I’m not gonna go off on a rant about doctors though. Anyway, that’s all I’ve got- even though I was tagged for six word memoir, I’ll get to that later. I’m too tired right now :-P. I’ll be returning the 12th, and probably back blogging the 14th for our T1 Diabetes awareness day! Until then, I am off to the green fields of Ireland and hoping to spot Damien Rice (he and my dad are from the same county). Ok,see you in 10 days !

My stay at the ER

Multiple blood cultures, one IV, two x-rays, an ultra sound, 7 hours, two unhappy employees, various laughs about young residents, and one EKG later… I’m infection free and none the wiser as to why my sugars were so out of control on Monday and Tuesday. Readings of over 500 that were taking hours to come down and then shooting right back up led me to my doctors office last night and then, by my physicians advice, to the ER. I had ketones off and on for those two days, and insane sugars. The ER, my mom decided, was the right place to go. We suspected an infection but after quite a long, tiring ordeal that saw me hastily ripping my hospital gown off as a resident came in outfitted for surgery, we had ruled out everything- and determined that my gallbladder probably doesn’t function properly. That’s old news, though. My sugars kind of took the backburner because, in my opinion, the ER staff got a little “gall happy”. By the end of the night they were offering to get me a PIPIDA scan and possibly go into surgery within two days. By that time my sugars were hovering around 200, and I was absolutely desperate to get home.

So that’s why I took it upon myself to get dressed, as the resident had just told me I could also come back for the PIPIDA scan at my convenience. My sister and I laughed as resident 1 and nurse entered my room to find me almost fully clothed, they were obviously irritated. Oops. Sorry, but everything about it was my worst nightmare. From the endless tests (including pregnancy, because “you have to be sure” apparently), walking down the hallway in a hospital gown and flats past a room full of police men and possibly a delinquent… to at least 5 different people prodding my stomach- including a “12 year old male intern” who was unfortunately good looking. It was the WORST. And still no answers. However, by the end of last night I was feeling a lot better and thus extremely antsy to be released. I finally came home around midnight. I had ketones before I went to bed (moderate) but was running around 160. I stayed home today, because I was high again this morning (nothing like monday and tuesday though) and still had small ketones. Our best guess is that it was a virus, and I slept the better part of this day away. I can’t seem to get my sugars under 160 for long but my condition today is definitely improved from Monday and Tuesday, and that’s good news. The hospital is my absolute least favorite place in the world and although I received good (if slow at times) care last night, I still hope I never end up there again.

Maybe later I’ll blog about the confirmations I got at the hospital that even health professionals are in serious need of diabetes education. I’m not blaming them, it obviously just needs more emphasis in the curriculum. It was both a terrible, and amusing experience altogether (I don’t know how many people say that about being in the ER.. but I was feeling much better for the last two hours, and was able to joke with my mom and sister, mostly about my frustration). But, to end on a better note.. Happy belated Saint Patrick’s day! On Saturday we had a traditional dinner as always, except.. well.. maybe the ice cream cake wasn’t so traditional. It was still delicious. I also got into the University of Delaware, it’s the 4th school I’ve heard back from, and my 4th acceptance- so I think everything is going well on that front. High school? not so much. I have a ton of work to make up now, but I’m on the mend… and I guess that’s the most important. It’s spring break now, though, so there’s plenty of time for make up work If you celebrate easter, have a good one!

Not what I expected

Well, my HbA1c came back today. It was 7.1. I should be happy, but I don’t feel like I deserve a 7.1. My control these past 3 months did not seem very good, and I never once recorded numbers, or food, or fine tuned basal rates. Not one thing that hinted at “tight control”. I ate what I wanted, and that’s nothing new, but I didn’t keep track of carbs nearly as well as I should have. So why doesn’t my HbA1c reflect that like I feel it should? I don’t want a high result but, at the same time I don’t want an “almost ok” result when I don’t feel like I worked for it. On top of it all, this is the lowest my A1C has been in a while- yet it measured the stretch of time when I felt like I was doing the least work. An 8 would have been easier to take, because I feel like I could explain it, and resolve to do more to get it down. But this? This tells me that, hypothetically, I could continue in the manner I am (which doesn’t feel like true “good control”), and still get decent results. Diabetes is so frustrating sometimes… I’m going to up the control anyway, and hope that doesn’t make my next HbA1c higher somehow.

Before…

I’m so bad at updating. Last weekend was very good, an unexpected 3dayer. Then this week was soooo horrible. It was- I kid you not- the absolute worst week that I can recall, ever. I got it together at the end though. An excerpt from my journal (also known as random piece of paper of the week) on Tuesday, went like this..

“I think my life has become much like a tragicomedy- just because it is almost funny how much I dread school every day. Without fail, each and every morning, my alarm belts out some still unknown AM radio show and my hand reluctantly, but forcefully, emerges from piles of blankets and nonexistent hours of sleep- just to hit the snooze button in a fit of anger? sadness?.. I don’t know. And it alarms again, in attempt after attempt to rouse me.. but I will milk the minutes for all they’re worth- desperately clinging to the too early hours of the morning, the too few minutes before my shoes are on my feet. I’m on my way to certain disappointment and already sporting a quick temper. But by some strange phenomena, I am dressed and rushing towards the door- grabbing lunch bag, math book, and, as if I have no choice, bringing my bad mood and insufferable demeanor along with me. My quick replies and curt answers are tinted with an air of sarcasm and all too evident disdain. It’s difficult to hide anymore, and ps. birdkins is the bane of my existence.”

I have to laugh at myself .. I’d explain who Birdkins is but you never know who might read this, and I don’t want to get myself in trouble. Anyway.. In DNews, I had my blood taken for my A1C on Friday. Egh.. the moment of truth is coming soon, perhaps I will be pleasantly surprised- but something (diabetic intuition perhaps?) tells me I probably won’t. oh well, there’s another 3 months to improve it. After I had my blood drawn, I agreed to be a guinea pig for a new nurse who had never taken a glucose reading before. Two nurses crowded around the office’s glucose meter and discussed which button to press, where to put the strip, and where to put the blood. It was a weird moment when I remembered that, once upon a time, I also needed to be taught. Almost a decade ago. I don’t remember much of the days before I could take a glucose reading in my sleep. I recall giving my stuffed pig shots of saline in my hospital bed and laughing as I took the orange from my lunch and used my practice syringes to draw out the juice and transfer it to a cup. I don’t think anyone wanted that juice. But here I am over 9 years later, sometimes forgetting that there ever was a “before”…

I hope one day we get a new one… “before I was cured”.

New infusion site

I was feeling rather bold tonight, and noticed that my stomach really deserves a break. I’ve never put my insulin pump site anywhere but my stomach, and the scars and spots that are still healing will speak to that. Needless to say, I think it has served me well but could definitely use some time off. So, I am sitting here with my first ever thigh site and wondering why I didn’t do it sooner. I don’t feel it at all, and I think it will definitely absorb the insulin better so that’s good! If it’s not too noticeable through my jeans tomorrow, and stays put at the gym- then I’m sold. I did, however, just check my sugar and it’s 361.. I’m not sure if it’s the site, or if I just didn’t bolus enough for dinner. Ugh, we’ll see in another hour.

Ah well, even if it takes some trial and error I think it’ll be worth it. Anyway I’m going to touch on the subject of differentiating between type 1 and 2 diabetes for just a second here (because I know to go off another rant would just be sounding like a broken record.)

I saw this billboard on the way into philly a few weeks ago… I guess until things like this get taken down people will continue to tell me that their vegan diet and exercise plan will cure me.. and that frustrates me to no end.

To sum it up. Sometimes I feel like I need to carry a sign around:
“I am a type 1 diabetic. I did not get diabetes because I was fat.
Yes, I can eat sugar.
Exercise and diet will never make my pancreas produce insulin.
type 1 and 2 diabetes are two very different diseases
And.. not all type 2 diabetics are morbidly obese.”

But until then, I suppose I must resolve to educate when the opportunity arises. It really just bothers me that any time someone says diabetes people seem to jump to “obese and lethargic”… also the “so do you have the bad kind?” and “you can’t eat sugar?” comments. Type 1 and 2 alike, I’m sure there are many misconceptions that bother diabetics. But explaining these things to the general public is just another task that I will gladly take on.. even if it does get frustrating sometimes.

And hey! Check this out. It has absolutely nothing to do with diabetes, but my friend and I have argued about this in the past. I think this guys voice is real, and she thinks it’s edited. I keep saying I’m going to invite him here to prove it’s real.. but.. that would just be creepy. Anyway, after quite a good long weekend, it’s back to school tomorrow. I’ll try to update more this week..

What if?

People have been talking about this story today. I, too, saw this story when I went to check my mail this afternoon. Initially, I thought how hard it must be for the woman’s husband, and their respective families. My heart goes out to all of them in such a terrible tragedy. But then my own life, and the lives of all type 1 diabetics crept into my mind. I know there is family history to take into account. There is previous management/care to consider. But there is still the fact, the terrible, nagging statistic, that tells me heart disease is the number one killer of women, and that having diabetes multiplies your risk of getting heart disease by some ridiculous amount. And then I got to thinking; what if it were to happen to me? to any of us? The threat is all too real, and my own mortality weighs heavy on my mind at a time when I think I’m supposed to feel invincible.

Sometimes the “what ifs?” get to be too much. I am saddened by what happened to this woman, and it hits close to home. Her husband and family are in my thoughts, I will hope that they are able to get through the difficult times that are so unfortunately ahead of them.

Finally!

A happy Friday post! Thank God for the fact that this week seemed to go by so quickly! There are some changes here. You’ll see my NEW and improved blog name, hopefully I’ve chosen well. Sheesh, that “diabetes blog.” was super lame-o, and stayed for much too long. Thanks to Amylia and Kerri for your suggestions, I liked them both but when I got to thinking about it I thought “Making the choice..” would be the best (From Steinbeck’s East of Eden) since I wrote about its importance to me on d-blog day and, similarly, in my college essay.

Making the choice…
To win, To do my best, To live well, to actively- and effectively- manage this disease- every single day (or as close to it as I can get). I think that’s so important for every one of us and takes the everyday courage that aiming for grace recently wrote about it. So, I think my new title successfully describes the way I feel about how we should make the choice to live well with diabetes, and that’s good enough for me. Have a good weekend everyone!

Some extra assistance

Saturday night we went ice skating. I felt kind of sad as everyone loaded their belongings into the trunk, and I tried to find ways to make my sugar tester and bulky container of glucose tablets fit into my pea coat without making me look pregnant. Maybe it’s time for a fanny pack?

On second thought… I don’t think so. I’ve only worn a fanny pack once, and that was not even a real fanny pack. When I went to Italy I carried my credit card in a really thin “fanny pack” underneath my shirt. But, other than that, I will never give in, just like I won’t wear the orthopedic shoes I know my mom would love me to (no offense to any fanny packers out there- it’s just not me!) But this is just what having diabetes is all about. Adjusting to the literal and figurative extra baggage that comes along with managing a disease 24 hours a day, 7 days a week.

It helps when you have a sister with a hole in her coat pocket, perfect for carrying a big bottle of glucose and lightening the load.

Anyway. I need a new blog name, agree? this is very bland, and was supposed to be temporary in the first place until I thought of something better.. well .. I haven’t yet.