Greetings from…

New Jersey. I’m writing this from my phone. I haven’t used a computer in over a week.

New Jersey is quite possibly the strangest state I’ve ever been to.
I’m really enjoying spending time with my cousins, uncle and aunt. It’s a total shift from only seeing them a few times a year to living with them for a short period.
Kids are so funny and refreshing. I wish I could write all the wonderful things they come up with. From mispronunciation to silly outfits.
I’ve met a lot of interesting adults with successful careers, a lot of moms who play tennis. It’s a total shift from what I’m used to at home. My uncle says “it’s not wrong, it’s just different.” I keep reminding myself of a phenomenon my friends and I often talk about; reverse ignorance. We had the privilege of growing up in an extremely diverse area both racially and socioeconomically. I’m used to variety. None of my friends look the same or come from the same household structures. I like it that way, but I’m aware it’s atypical.
Here. Things are so different. For being so near to one of the most vibrant cities on earth the kids here seem to all enjoy the privilege of wealth and a (unknowing) comfort with a total lack of diversity. I don’t remember talking about how big my friends’ houses were at 12. That stuff just didn’t cross my mind. Another thing is most of the kids I meet on my daily outings with my cousins always say something about me being the babysitter, as if having a cousin of another race (or half race) is an impossible thought. My cousins are quick to correct, but it’s still strange. One girl, who I’ve since won over with my taste in nail polish color and willingness to swim with kids, said she thought I was someone else’s babysitter who just happens to be an older black woman. I get it. They are kids. They don’t know, but still…it’s strange to experience.

A big joke around here is “are you going to tweet or blog that?” I often respond that it’s all material for my book. I even outted this blog last night (I hope no one new is reading this), but honestly this will be my one and only post from the Garden state. All of these people have welcomed me into their world, this won’t be The Nanny Diaries New Jersey Edition.

I’m counting the days until I’m home…14.

Until next time.

So I just let go of what I know I don’t know

I still haven’t figured out how I feel about this whole my life on the internet/what to share/privacy/are there rules? thing, but how can I expect to learn anything if I don’t even try to write? I think I just need to loosen up.

At first I hesitated moving away from writing strictly Diabetes related posts, the whole writing what you know thing. But honestly I’m more than Type 1 Diabetes. Hell, I haven’t even checked my glucose since 10 o’clock last night. This blog is called ALL Ways Jillian after all. So, I think my new challenge is to not worry about all the rules or doing it right, but just sharing. It starts today.

After an intense and way too fast 3 weeks of summer classes, I can officially say I’m a senior at Scholarship University. That really, really freaks me out. A year from now supposedly I’ll be ready for the real world. I have no idea what that will mean for me. I guess I have almost 12 months to figure it out…or not. Technically, I have my whole life to figure it out.
Tomorrow I’ll be on my way to spend about 5 weeks with my uncle and his family. After my grandmother’s death, I knew I had to take my aunt up on the offer to spend a good portion of the summer with them. I’ll be there as a live in babysitter and helping shuttle my little cousins around town. They live about 5 hours from us, so we only see them for holidays. I think it will be a really great experience, but this is also the first time I’ll be away from my house and family for more than a weekend. I’ve never been to camp or away to college, so it will be a huge change. Packing is so difficult. I have an entire bag of just D stuff, and I’m sure I’ve totally over packed in that department. So I’m off on an adventure. I’m sure I’ll have a lot to write about while I’m there, but I’m not sure when I’ll have another chance so until then I’ll leave you with this…

A great blog that posts photo outtakes and special moments from weddings…makes me smile every day: Moment Junkie

Living In The Moment – Jason Mraz

I’ll make this place your home

So I made it though DBlog week and now I’m trying to find a way to make a comeback.
The problem is, I have so many problems.
Some of which I’ve discussed before. I’m not sure how I feel about putting my life on the Internet anymore. BUT I feel such a need to express my thoughts. It’s also a bit boring to write for a small audience, although I wouldn’t want the pressure of audience expectations either. It has never been my intention to write for an audience, I want to write for myself. But there is something great about feedback that makes me want to keep writing. There is also the fact that a good amount of what I want to write about involves outside parties or facts I don’t have the emotional capacity to face. It can be very emotional to pull together my best post ideas. Where does this leave me? I’m not sure.

So many contradictions! Welcome to my brain. How about we move on to something lighter while I try to figure this out?

Does anyone still watch American Idol? I’m pretty good with predicting winners and this year was no exception. So congrats to the crooning cutie Phillip Phillips! I guess America couldn’t resist the sweet southern stylings, I know I couldn’t. He’s just adorable and a Virgo (like me, I have a thing for predicting that too). I hope his kidneys don’t continue to plague his career. In the words of my aunt, a 40-something mother of 3, “If I saw him on the street, I’d just run up and kiss him!”

Here’s the winning single:

I can be your hero

Let’s end our week on a high note and blog about our “Diabetes Hero”.  It can be anyone you’d like to recognize or admire, someone you know personally or not, someone with diabetes or maybe a Type 3.  It might be a fabulous endo or CDE.  It could be a d-celebrity or role-model.  It could be another DOC member.  It’s up to you – who is your Diabetes Hero??  Find More Posts Here

If I’m being completely honest, I am my own diabetes hero. On a day to day basis, I do the footwork. I check my glucose, change my pump sites. I wake up in the middle of the night. I manage ordering prescriptions. It’s all about me, but as we in the DOC know, it takes a village to raise a child with diabetes.

I can’t thank my mother enough for being my only diabetes care provider for the majority of my adolescent and childhood years. Although I am the only one steering this diabetes ship these days, she still checks in with me from time to time. Offering helpful words, encouragement, and reality checks.
Thank you to my current endo, who has seen me through the brutal early teen years. From A1c’s around 12 to the under 7 happy place. For pushing me, but letting things be my decision. For saying he’s proud of me and meaning it. It means a lot.

I encourage everyone to pat themselves on the back and also thank those who lift you up. Everyone is a hero when they face diabetes.

Hero – Enrique Iglesias

Just in time…

Today’s D-Blog Week prompt: “Back for the third year, let’s show everyone what life with diabetes looks like! With a nod to the Diabetes 365 project, let’s grab our cameras again and share some more d-related pictures. Post as many or as few as you’d like. Feel free to blog your thoughts on or explanations of your pictures, or leave out the written words and let the pictures speak for themselves.”

Only 3 sugar checks. A slushie. French Fries. Sometimes you need a diabetes vacation. Here’s how I spent my day:

Just one breath in a chain of thought

Click for the What They Should Know – Friday 5/18  Link List.
Today let’s borrow a topic from a #dsma chat held last September.  The tweet asked “What is one thing you would tell someone that doesn’t have diabetes about living with diabetes?”.  Let’s do a little advocating and post what we wish people knew about diabetes.  Have more than one thing you wish people knew?  Go ahead and tell us everything.

Open letter to the uninitiated:

I’ll start by saying there aren’t enough words to sum up what you need to know.

I’d say walk a mile in my special diabetes socks, but I don’t wear them! Hell, I hate socks. I wear flip flops from May to September, and I know that there are people out there that think this is a terrible idea. To that I say I also eat cake, so sue me. Before you judge, educate yourself. As a so called healthy person you wear whatever silly shoes you want and probably consume your fair share of carbohydrates (FYI that’s what matters in Diabetes not SUGAR), and somehow because you haven’t been invited to our club it is totally okay. Actually, I’m pretty sure that anyone would say good health is about balance. So, do I eat a loaf a bread a day or eat from a can of frosting (I know someone who is perfectly healthy and thin who does this regularly)? No, I actually don’t even like bread and I always scrape my icing off. But sometimes I really want a friggin’ panini and I too have birthdays. So if it’s the right choice for my health and I’m willing to take the time to think about how it will impact my diabetes management, I’ll have the Chipotle Chicken from Panera or yellow cake with just a tad of chocolate icing. Enough with the humor though, although that’s a necessity when you live with Type 1 Diabetes, or any chronic disease.

You couldn’t know what this disease does to the body or the mind, until you’ve lived it.

So think about this:
I was 10 years old when I hit the point that I’d been living with it longer than I’d ever lived without Type I Diabetes. What were you doing when you were 10? If you aren’t a part of this great and terrible club I can bet you probably were not afraid to go to sleepovers and you weren’t being walked to the nurses office because your blood sugar was too low to go alone or being called “fruit roll up girl” because snacks weren’t something to look forward to but were more of a prescription dictated by insulin.
Have you ever been 20 years old and wondered when the 15 year streak of good luck will stop and the complications will kick in from all those years where so called good control seemed impossible?  Do you worry that everyday is a step closer to vision loss or kidney failure? I bet you had fun in college. Thirsty Thursday? Never happened for me. Not just because I’m underage or because you can’t consume alcohol when you have Type 1 Diabetes (it’s possible, like everything else it just requires balance and planning). It’s because the very few times I’ve stepped out on that ledge have been the scariest experience of my life with Diabetes. For me it’s not worth it, but it doesn’t mean it doesn’t hurt that I’m the decidedly sober friend who doesn’t get invited to parties much. I crave the idea of a normal college night, but I’ll never have it. I hate that I’m 20 years old and content with my life, but painfully aware that the second biological clock of Diabetes makes me doubt if I’ll find a man to marry in time to fulfill my dream of being a mother or will diabetes take that from me too. Tick tock.

This disease is a game with no rules, a minefield, and it is so psychological. It’s quiet, but it’s there. We are constantly trying to figure out which choices to make, what risks are worthwhile. What basal rate? What other medications? How to incorporate exercise, alcohol, special foods… But none of us are experts, so we try to stay calm and work through the situation knowing full well it could all just blow up in our faces.

So before you tell someone not to eat that or to put on special shoes, think about it for a second because I think you’d occasionally want some cake if you lived this way. I’m not asking for a spotlight, special treatment or sympathy, just thoughtfulness.

Never Know – Jack Johnson

Here’s to the future for the dreams of youth

Today let’s tackle an idea inspired by Bennet of Your Diabetes May Vary.  Tell us what your Fantasy Diabetes Device would be?  Think of your dream blood glucose checker, delivery system for insulin or other meds, magic carb counter, etc. etc. etc.  The sky is the limit – what would you love to see? Read the rest  here

At first I thought…I’ve got the CGMS and Animas Ping I don’t really need much else. But then, I thought about it a little more. I guess my one wish (out of many) would be if my pump, meter and CGMS were all connected. I’m not exactly asking for closed loop, artificial pancreas grade communication, but there are definitely some communication improvements that could be made.

The first is that I hate calibrating my Dexcom. Sugar check then punch it into the Dex? No, why can’t the meter just send it to the Dex automatically???

Another communication problem. Sometimes I check my sugar, but I’m not ready to bolus just then from the meter remote. What if somehow the meter could send the glucose number to the pump and it could be stored on both the pump and meter (which it already does) for about 10-15  minutes? That way when the time comes around to bolus, I don’t have to think about what my glucose was just a few minutes ago and dial it in, it will already be there.

Seems simple enough, says the art major to the programmer.

Speaking of cool technology… Went to the endo yesterday. Finger stick A1c  (where were you all of my childhood?!) is 7.1 Not my best, but I’m okay with it. I also saw this unit and bunch of a brochures for this bad boy:

SO FREAKING AMAZING.

I Want It All – Queen

The hips…they don’t lie.

One Thing to Improve – Wednesday 5/16 Yesterday we gave ourselves and our loved ones a big pat on the back for one thing we are great at.  Today let’s look at the flip-side.  We probably all have one thing we could try to do better.  Why not make today the day we start working on it.  No judgments, no scolding, just sharing one small thing we can improve so the DOC can cheer us on!

So here it is. My confession.

I’m terrible with site rotation. I’m a creature of habit. I only use my hips, above the belt line 3 days left, 3 days right and back again. Nothing else is comfortable. Arms burn, never had a leg site that didn’t bleed or rip out. Below the belt is out of the question because I always become super paranoid about the sites ripping out and they usually do. Comfortable real estate is limited and I always wear my Dexcom sensor. Lately, I’ve noticed my sites are dying at a rapid pace. I used to be able to go beyond day 3 without a second thought. Now by day two my numbers go a little wonky. I’ve had more leaky sites in the past few months than I’ve had in my 4 years (HOLY CRAP) of pumping. I know what I need to do. Be brave, take a little arm burning or wear dresses three days straight for a leg site.  Give my hips a break, so they can continue to serve me. I guess I’ll take the plunge…literally and switch it up.

Hips Don’t Lie – Shakira

I caved…

Okay I signed up. I’ll probably fail, but I can’t miss the opportunity to join this wonderful celebration of all things D. So here’s today’s topic: One Great Thing

Living with diabetes (or caring for someone who lives with it) sure does take a lot of work, and it’s easy to be hard on ourselves if we aren’t “perfect”.  But today it’s time to give ourselves some much deserved credit.  Tell us about just one diabetes thing you (or your loved one) does spectacularly!  Fasting blood sugar checks, oral meds sorted and ready, something always on hand to treat a low, or anything that you do for diabetes.  Nothing is too big or too small to celebrate doing well!

What’s my one great thing? If I’m not prepared, I’m always ready to improvise. I can only think of 4 times when I haven’t had exactly what I needed to handle a diabetes situation and even then I always found a way to make it work.

Dead pump battery? Pulled one out of a calculator. Another time, ran to the school book store and paid a regrettable sum for regular alkaline double A’s. I’m a lithium girl, but sometimes you have to do what you have to do.

Insulin is running low in my pump and I forgot to replace the vial that I fill cartridges from which is basically empty. Turn the basal down and draw up a syringe from dregs of the insulin bottle.

Flooded infusion site and the only spare I had was one I used to show people how they worked. Well, I popped it in because I didn’t have much of choice being 30 minutes from home in the middle of a school day and having class until 5 PM.

All of these instances have taught me. I know to always have extra everything. Two spare infusion sites, two bottles of strips, emergency glucose tabs, a syringe, batteries in my backpack, my kit and my purse. A car emergency box. It even goes beyond typical diabetes stuff. I’m the person to ask for a bandaid, antibiotic ointment, pain reliever, hand sanitizer, two pairs of scissors in art class. You name it, I probably have something that can solve your problem. I have friends that call me “boy scout mom” because I’m always prepared. It’s a diabetes thing.

Timing is everything.

There are no coincidences, right? How perfect that I am finishing up my very long and emotional spring semester right in time for D-Blog Week? It’s a great opportunity for me to catch up on all the DOC goings on in a short period of time. I don’t have the time to participate, studying for finals and an endo appointment are taking up this week for me, BUT I’ll be reading. And if I find the time maybe even writing an update. I’ve missed you all, whoever you may be. I’ve missed what writing does for me. So here we go again…