This is NOT the face of diabetes, but rather the butt.
The butt on the beach.
The butt under an umbrella.
The butt (and the rest of me) being VERY fortunate on a spur of the moment weekend getaway.
There is also a thigh of diabetes with a Dexcom G4 sensor on it.
The sensor had 3 heart rhinestone stickers to jazz it up.
The thigh of diabetes was too busy getting some sun to pose for pics.
A few items about this photo:
This past week I was on vacation to escape my birthday (which I spent most of, yesterday, on an airplane). Below are my vacation contributions to #wherethepumpareyou which is a Twitter thing where you photograph your insulin pump in a location. Both my insulin pump and I had a great and active vacation.
I’m a bit late on this post but it’s been one hell of a Diabetes Awareness Month for this lady! This post is the follow-up from my JDRF New York City Walk for a Cure post. Our team, Alecia’s Stem Cells, expanded again this year. On November 11th, I walked with our first EVER Alecia’s Stem Cells Los Angeles team at Dodgers Stadium (and the crowd goes wild….. Rrrraaahhhh). It was wonderful to have a 2nd team again this year filled with friends and family. I was amazed by the team spirit exemplified by my cousin, his wife (my wonderful friend), her sister, and her sister’s boyfriend. They sent walk donation letters out as a group. When I received one, of course, I cried. Their letter talked about me and used parts of my own NYC letter, but then it included a story about the beloved uncle of my cousin-in-law and her sister, who had died of complications of diabetes.
Our little newbie team managed to beat our LA team goal and raised $2,210. I was, and remain, amazed. Our NYC team had just raised $21,631.62 and I was 100% sure I had asked anyone and everyone to donate already by the time the LA Walk was on the horizon. If you doubt the power of social media, I offer you this, friends posted a zillion NYC walk team photos on Facebook right away. It was an incredibly exciting day for me and I think that comes across in the photos posted. As the LA Walk approached, I posted something about how great Walking in NYC was and if anyone felt they missed out, there was still time to help out our LA walk team. Within minutes, two Facebook friends I barely know donated! Right before I left for LA, I posted that we were $50 away from our team goal. 3 people who had already donated to the NYC walk all donated AGAIN to help us reach our goal. I’m teary just typing this! AMAZING (not the teary part, since I’m a crier, but how many people cheered us on and supported our team’s efforts).
LA Walk Day was incredible. Gorgeous weather, a new venue and fun stories. The walk route circles Dodger Stadium twice (but different paths both times) and THEN, the last lap is around the infield! There were tons of diabetes vendors to visit and lots of swag. I got samples of LEVEL Glucose Gel (the mandarin was super duper sweet tasting but very effective as I learned on the last lap when Dexcom beeped bg 87 and an arrow down) and Quick Sticks (which are freaking awesome – said me, the girl who’s never had a pixie stick ever). I also got chatty with an Animas rep and begged for the Vibe (oh I know, I know, it hasn’t been submitted to the FDA yet, but a girl can dream and ask the same question over and over, and yes, over).
About 8 years ago, I went to some sort of JDRF NY luncheon. It may have been a walk kick-off lunch but I’m really not sure. I sat next to the only other person who seemed my age at the table, and she was a fellow T1D. We became friends and she walked many moons ago with Alecia’s Stem Cells NYC. At least 6+ years ago she moved back to Los Angeles, got married and had two kids. All these years we’ve stayed in touch via Facebook and right before the LA walked she signed up for our team along with her family. It was so great to reconnect with an old D friend and meet her adorable family.
The Set-Up & Reconnecting with an old friend
I also tweeted asking if anyone in the DOC was going to the LA Walk. Although our team did the Big Blue Test, I never managed to meet-up with Mike Lawson (boo hoo) BUT, Diane from Type 1 Trip said they had a team and described their Team Julia shirts. I found them in the infield. I’m fairly certain I may have come across as a stalker, but I asked a ton of people in pink shirts who Diane was and although we were both busy with our teams, we had a few minutes to chat and I believe that was the first time I introduced myself as “Alecia, ummm Surfacefine on twitter”. We had a big hug moment and my team was off and running (well walking).
As I’ve posted before and will say here again, Walk Day is like a weird holiday for me. Its a day full of hope, promise and an incredible amount of love! It is a day near and dear to me. I can’t thank my friends, family and fellow walkers enough for their amazing generosity and supporting the ongoing efforts of JDRF.
Below is the email I finally finished (I usually have this letter ready to go in June so I am terribly behind this year) to get my friends and family to sign-up for the 2 walks I will be participating in on behalf of JDRF. I’ve organized/led Alecia’s Stem Cells since 2001. We have walked every year, rain or shine, since then in NYC, across the magnificent Brooklyn Bridge. In order to keep people involved and interested, I have made it my mission to constantly change things up.
I did 2 walks in two cities in 24 hours 2 years ago (Boston & NYC). I’ve hosted give-aways, walk kick-off parties and post walk parties. I’ve worn pirate props along with 30 of my friends while walking 3 miles. I’ve made videos. I’ve sat in the dark at Battery Park waiting to do TV interviews at 5:30am about why I walk. If you haven’t guessed it, this is an event near and dear to my heart and this year I will have the largest turn-out of my immediate family we have ever had. My parents, both brothers and their wives, my sister and hopefully my new niece or nephew are all registered to walk with me.
I’m posting this note to invite you, the DOC, to come join me. Its a great day for a great cause and I would be thrilled to have us walk together!
As you may know (OK seriously, who doesn’t know?), I have lived with type 1 diabetes (T1D) since I was 6 years old. I have managed to stay alive thanks to insulin but insulin is far from a cure. I am committed to JDRF, the leading global organization focused on T1D research. JDRF raises funds that power the global movement to cure, treat and prevent type 1 diabetes (T1D). The goal of JDRF is to improve the lives of every person affected by T1D by accelerating progress on the most promising opportunities for curing, better treating and preventing T1D.
In the past year, I’ve embraced some new technologies and have become further involved in diabetes advocacy. I suspected I was having inconsistent low blood sugars in my sleep. I was not experiencing the symptoms of low blood sugar until I was already in the “danger zone” (hypoglycemic unawareness) which terrified me since there are too many of stories of people who hit that “danger level” and simply never wake up. I now wear another device along with my insulin pump. It’s called a Dexcom sensor and is inserted into my tummy or my arm (I prefer the arm since my insulin pump is on my stomach). The Dexcom sensor gives continuous blood glucose readings to a receiver which is always with me and helps me make smaller and faster changes on my insulin pump. The cool part about the Dexcom is that it gives me trends with my glucose levels although I still have to check my blood with fingersticks throughout the day. Most importantly though, an alarm sounds if my blood gets too low (and I feel so MUCH safer at night).
I also completed training to become a JDRF mentor. The experience was eye-opening especially about issues currently facing many diabetics and their families. Listening to stories of bullying and depression that often walk hand-in-hand with any chronic and degenerative disease was heartbreaking. After a truly horrific experience involving an insulin pump emergency on an airplane, I realized that MY story and experiences with managing this disease could help other people, especially parents of diabetic children. Through a series of coincidences or simply fate, I started writing and advocating in the process of trying to give back. I realized I was getting something out of this too… encouragement not only from my fellow diabetics but from other people who heard and read my story. I had no idea how much that encouragement would relieve my own sense of stress (and that I’d learn some new diabetes tips in the process).
Amazing advancements are happening all around us and to keep this momentum alive, I am asking you to walk with me!
This year’s Walk takes place in New York City on September 30, 2012, AND we will also be walking in Los Angeles on November 11, 2012. I’m writing to ask for your support. Now more than ever, you can make a real difference in my life and the lives of all people with type 1 diabetes. Please either join my team, Alecia’s Stem Cells, as a walker, fundraiser or support me with a donation. It’s simple, fast and fun AND we will of course go out and watch football afterward! Please visit my personal page to get started.
Thank you for your support!
xo Alecia
Sounds like a passing test score right? I’ve thought way too much about this blog post (read: over thinking is NOT good). I considered advice I’d give to a new diabetic, or a letter to my siblings (especially my brother who wasn’t even 2 years old when I was diagnosed) for all the times my “up-keep” took away from theirs.
Me & my brother
I imagined a post about the incredible changes in diabetes technology that have occurred in “my” time and my hopes for the future. Last week, I kept recalling a memory of my high school English research paper on diabetes and how I left out ONE big fact, a book listed the life span of a Type 1 diabetic to be cut by a 1/3 (I didn’t want my class mates to know that but I cried myself silly). I envisioned listing all the absurd comments people have made when they realized I’m diabetic (that’s still on the blog list for another day… yeah I’m coming for you Jet Blue flight attendant). But tomorrow is the big day and it’s getting late and here I am. So here’s what I got:
My parents took the doctor’s advice when I was diagnosed (6/19/79) as their mantra:
I was a child first, and a diabetic second.
That was it. Plain and simple. So I did everything every other kid did. I played sports. I played a ton of sports I didn’t even want to play. I went to sleepovers. I went to sleepovers for kids I didn’t like. But I lived. I got yelled at for getting a C+ in Spanish. I got grounded for mouthing off to my Mom. I spent too much time on the phone with my friends. I had so many summer jobs that I’m pretty sure my parents broke all US child labor laws. I liked boys who had no idea I even existed. And I lived.
I looked at colleges (side note: my Dad took me to visit Harvard first… no, I was not even close to Harvard material), and I made sure those colleges were not near my parent’s home. I had roommates who scared me. I made friends. I studied Architecture. I had a fake ID. I drank too much. I didn’t do a good job checking my blood but I always took my shots. I gained 15 lbs my freshman year of college. It looked more like 25. I switched majors. I had boyfriends. I never once did drugs. I made questionable fashion choices (hey it was the 90s, cut me some slack). And I lived.
I got a job (OK that did NOT happen right away). I moved to NYC. I got new doctors. I got more serious about my health. I embarked on a career. I had a boss who believed in me. Wait, I had a boss who really believed in me. My job took me all over the world. I had my eyes lasered more than once. I took a heck of a lot of shots. I traveled more. I pulled the trigger because I was finally ready, and I got a pump. Pump training took a ton of time. My college boyfriend broke my heart. I couldn’t eat. I got really skinny. I went to therapy to fast forward the healing of my heart. Therapy taught me some stuff I hadn’t thought about how I viewed being diabetic. I realized I didn’t like the ex-boyfriend that much. I lived.
I got back in the saddle. I dated most of Manhattan (and some of Brooklyn). My career actually took off. I saw a lot more of the world. I had crazy adventures. I started a JDRF Walk Team (Alecia’s Stem Cells). I got a lot of people to walk. I hosted team fundraisers. I had big parties to celebrate diabetes anniversaries (Its NYC. We eat that stuff up). I recruited my friends and family for all sorts of MY stuff. I kept designing lamps. I started designing jewelry. I tied my jewelry business to my JDRF fundraising. My work appeared in amazing places. I went to amazing places. I lived.
Our 2010 Alecia’s Stem Cells shirts!
I have the same problems other people have. I have fears many of my peers have never even considered. I worry about the future. I am infuriated that stem cell research lags so far behind in this country. I frequently curse the FDA. I have begun to curse the TSA. I worry I will never have kids. I worry if I did have kids I won’t be alive to see them grown. I worry I will die in my sleep of hypoglycemic unawareness. I worry that all this diabetes stuff is too much for my boyfriend. I worry I will need a new kidney. I worry that if I currently pay more for private health insurance than many people’s annual salary, how will this ever possibly turnout well? I worry every time I get cut. My current big worry is that I will someday be a burden to my siblings. My bigger fear is that my future nieces and nephews will be diabetic too and I don’t want my siblings to have that burden. I worry I won’t get to see the day of the artificial pancreas being available or I’ll be too sick to get one. I worry that I will fall through the healthcare cracks. I worry that I worry too much.
And then I take a minor break from worrying. I work-out. I get my heart beating. I get my heart pounding. I think of my circulation and telling my heart to step up to the plate because my pesky pancreas can’t anymore. I think of all the parents I’ve met who cry when I speak to them because they consider me an inspiration. I think of my sister’s college roommate being diagnosed (T1D) while in college and how she felt I was the only one she could ask questions. I think of how I fought to get a pump. I think of how glad I am to have a Dexcom. I think of how I was the longest living diabetic in my JDRF mentoring class. I think of turning 40 next year (OK that freaks me out so I immediately STOP thinking of that and then freak out a little more. 40? Seriously? I act like I’m 12). I think of how much I value my life. I think of all the gifts I’ve been given and how truly blessed I am. I think of this image below (and I apply it to things far beyond running), oh, and by the way, I live:
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!
Oy vey. This morning I came up with at least 6 different answers to this question (had I worked-out longer this AM I am sure I could have easily doubled or tripled that number). Hmmmm. Just one thing? The first one that comes to mind is combining my almost 33 years diabetes knowledge with the information I’ve learned from 4+ months with my beloved Dexcom. The most obvious one for me is, “HEY if you’re going to eat like the winning hippo in a game of Hungry Hippo, bolus earlier!” 
My first few weeks with my buddy Dex (Dexcom is the name for more formal occasions) taught me that my BG shoots up right after a meal (often) and returns to my target range later. At first, I felt compelled to correct those post meal highs. Dex beeping at me that I was too high was like a flashback to my high school Spanish class and Senora Bogan constantly yelling at me to “SILENCIO POR FAVOR!!!”. Correcting those Dex beeps would lead me to crash later and then eat glucose tablets like they were M &Ms (what can I say, M&Ms are quite tasty).
So after the first few weeks I kinda, sorta started to chill-out about the corrections (I fought myself NOT to do a correction) but knew that wasn’t the answer. My blood shouldn’t skyrocket in order to comeback to normal range. I had to face it, I must bolus sooner and as much as I hate admitting it, I need to combo bolus sometimes too. This boils down to organization and a little more planning on my part. Ugh. I’ve admitted it and now I have to do it. Gracias!