I’m one crafty diabetic (or just a girl who likes an excuse to use stickers)
Dexcom Crafts
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Tag Archives: diabetes
Wordless Wednesday
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Luckily there were other, more pleasant memories of my vacation.
Are you free?
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
Festive Dexcom
Dexcom site will be changed later today. Decided to ride this one out with some American flair!
My Mom’s 4-Letter Word
I’ve been active in JDRF (especially the JDRF Walk-For-A-Cure events) for much of my life. I have two Alecia’s Stem Cells teams walking this year (New York City on September 30th and Los Angeles on November 11). Every year, I write a letter, asking (sometimes begging) my friends and family to participate. There are years where writing the letter comes easily, while other years I agonize over it. I try to have the letter ready to go on my diaversary (June 19th) but this year I did a diaversary blog post instead. So yes, I’m a little behind my own schedule. It got me thinking though, why JDRF? I have recently shared my D-blog with my family and decided to ask my Mom, about why my parents got involved specifically in JDRF. Although I was a bossy 6 year old when I was diagnosed, I wasn’t calling the shots (Get it? Diabetes pun? Shots? Ha) so here’s my Mom, filling in the blanks:
Seriously? My Mom is gorgeous, inside and out. This was me pre- D.
When asked why did we get involved in JDRF? The answer came easily.
Alecia, our firstborn child was diagnosed with diabetes at the age of six. That day, June 19, was a shockingly sad time in our lives. To say we were blindsided, is exactly how we felt. This was a child who was the picture of health, extremely bright, adorable, always cheerful and up for anything. Everything we had ever heard about this disease came running through our minds and we were devastated. Fear of the unknown was stifling!
Our endocrinologist, Dr. Robert Kaye, was most encouraging. He gave us the best advice which became our mantra – “Alecia is a child, who happens to have diabetes, not a diabetic who is a child.” That was the beginning of our journey, becoming immersed in the education of the vast world of living with diabetes. Dr. Kay suggested we become acquainted with JDRF. Through our association with them, we quickly realized we were not alone. JDRF became our lifeline to meet others with small children, to learn from those families who had been down this road and most importantly, we learned fact from fiction about this disease.
We attended lectures, participated in telethons, had Alecia appear in public service announcements and I became a member of JDRF’s board – ultimately running the Philadelphia Zoo walk. We were always hoping with the funds raised through JDRF that a cure was in the wings to be realized by our precious little girl and all the others afflicted with this life altering disease.
As years passed our daughter grew up, and we did everything possible to ensure her a normal life, participating in various activities like other kids her age. After college, she moved to NYC and became involved in the NYC Chapter of JDRF and has cultivated a team each year for the annual walk in which her family and friends all participate. The involvement with JDRF has shifted to her as an adult.
Our memories of working along side Lee Ducat and her leadership of an all embracing foundation (JDF) now JDRF, still remain a source of inspiration. Lee fostered a community to welcome, educate, and most importantly diminish the fear factor for families. JDRF introduced us to other families who shared the same ultimate goal to help our kid’s lives be relatively normal until the day they discover the four letter word – CURE.
Wordless Wednesday – Bloody Diabetic
I took some photos (I know, weird right?) of the gnarly situation known as Saturday Night Site Change.
Note: This is not the norm for a site change. The clean-up was ridiculous and I just found blood on my wall 3 days later. This is why I advocate for diabetes research. A pump is a great tool, but it is not a cure.
Not KoolAid. Pump site madness. Oh and the pump is not a cure.
My tummy. Site was working great. Removal of site, not so great.
33 out of 39
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:
Bus riding with B
Memorial Day Weekend and I did what most New Yorkers do (Ok that’s not true. I did NOT go to the Hamptons). I did however enjoy time with friends who happen to have outdoor space (yep, a rooftop get together). Gorgeous right?
I wore a strapless sundress and just inserted my first (drum roll please) unassisted (more drum rolling) Dexcom site in my arm earlier in the morning (woo hoo *Victory Dance*).
Friends arrived at the rooftop festivities with their 2 1/2 year old, Lady B. I joke that Lady B is smarter than I am. The joke is that I’m not joking. This kid quite possibly (possibly = definitely) has a better vocabulary than I do and is so bright that I am considering hiring her to work in my office and run my finances. Anyway, when it became too dark to sit on the roof, we went to my friend’s apartment where Lady B and I sat next to each other on the sofa. We started playing what I would like to call, “Riding A NYC Bus” (lots of colliding into each other). Quickly it was determined that said friend’s loft steps were the “bus stop” and the sofa was the bus. When we sat on the steps we were squished (the steps are narrow, or I have a big butt, or something like that, shhh no judgements), and my Dexcom sensor was right in Lady B’s face every time she spoke to me. I kept her jabbering, not sure how to explain my arm if she asked (I have limited knowledge on 2 year olds. That is also true for 1 and 3 years olds). Lady B and I ran around the coffee table and back to the bus stop. I felt a tiny little hand cup right over the Dex sensor and Lady B leaned up and asked what was on my arm. I stammered and started to explain that my body doesn’t always work correctly and this helps me know how to make it better. She kept patting the sensor, with the gentlest touch, so cautious. Her Dad started explaining it is medicine. She kept smiling, staring at the Dexcom sensor, so I told her it helps me stay healthy and strong so I can play with her. Apparently that was all she needed to know because she pulled her hand away and told me it was time to get on the bus.
The bus game continued (its Manhattan on a holiday weekend, lots of transfers) and my Dexcom sensor became the hot topic (what else are you going to talk about while waiting for the bus right?). When Lady B realized a sticker held the Dexcom on my arm her eyes were as wide as saucers and her whole face lit up. She kept patting my arm and telling me how much she likes “this” (The Dexcom). I wasn’t sure whether to laugh or cry. I’ve had my fair share of frowning looks and stares from strangers in the last few weeks. The weather is warm and I own far more sleeveless items of clothing than I ever realized. When asked, I explain to strangers that I’m diabetic and and quickly explain “it” tracks my blood sugar levels. Depending on the person’s reaction I might say something like I’m under house arrest OR I’m in the Witness Relocation Program and add a giggle, but there I was, playing crazy bus ride, with a little girl who wanted to talk stickers and for some reason, kept nodding her head and saying, “I like this”.
D-Blog Week Day 3- One Thing I Could Do Better
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!
Diabetes Blog Week (my first real post)… One Diabetes Thing I Do Well
Today’s Topic for Diabetes Blog Week:
Tell us about just one diabetes thing you (or your loved one) does spectacularly!
A few weeks ago I had what I consider a diabetes test. No, not a test to see if I am diabetic, that test was in the summer of 1979 (man am I old). No, this was what I consider a test of my internal Emergency Broadcast System. The whole story is rather graphic and is better suited for another post (later this week) about insulin pumps, X-rays, TSA, and warranties. Today, I am supposed to pat myself on the back for the diabetes thing I do well. My “thing” is that in a serious panic, freak the front-door out moment; I keep a level head, and use my smarts.
I was on a red eye flight and unbeknownst to me had a bent cannula under my skin from a brand spanking new pump site (oh and by “bent” I mean like if you took a regular straw and tried to turn it into a bendy straw).
cannula bent like a non-bendy straw
I have to preface this story by explaining I take anti nausea pills sometimes when I fly and for the first few hours of the flight I believed I was sick, not diabetes sick, which led to some of the impending confusion taking care of the situation. For the sake of sticking to the topic, I will shorten this to the following facts: hours of puking, taking over one of the bathrooms, and peeing my pants. When my Dexcom showed my BG was in the low 200s, I wasn’t too concerned since I was getting sick (over and over and over) and definitely didn’t want to deal with going low until my stomach issues were under control. I kept giving myself mini boluses (less than a correction) with my pump, my body continued exploding, and I kept noticing my BG wasn’t decreasing at all. By the time the Dex said I’d reached 300, I suspected I was possibly having the Perfect Storm scenario.
I changed my pump site in a huge rush to get to the airport (yep, stupid) but I didn’t remove the old site as my just-in-case back-up (yep, smart). So I switched the pump to the old site, bloused and waited (ok “waiting” is a nice way of saying I drank a diet Coke in the bathroom and started puking it out my nose so violently I got a nose bleed). My BG sort of stabilized in the 300-320 range. It wasn’t going down though and at that point it really should have. I had already peed my pants while puking (and made new very scratchy undies out of toilet paper) so my pride was long gone. Somehow, in my muddled state, I went through my mental checklist of what to do. I made it back to my seat and grabbed my glucometer, glucose tablets, a new vial of insulin and a syringe (something I rarely traveled with many years ago when all I thought I ever needed was my back-up old pump).
Back in the bathroom, Pukefest 2012 continued but I was able to check my blood… 427! Ack! Dex said 337. I opened the new insulin vial and pulled the safety cap off the syringe (as a side note: I used to chew on those caps as a kid as I did my shots. I put the safety cap in my mouth for a second, caught myself in the mirror and couldn’t believe in a time of complete distress I automatically did something I haven’t done since I went on my first pump 12 years ago. What a weird-O). Anyway I looked over my belly and figured since I was clearly having insulin absorption issues, I should inject elsewhere so I gave myself a mini shot in my belly far from both pump sites (smart) and then another one in my hip (which was a mess with the plane bouncing but I got it… also smart).
I had puked myself silly by the time I was finally able to sit back in my seat for the remaining 45 minutes. By the time we landed, my BG was in the 240 range. I managed to keep hydrating myself (small sips and smart) and grabbed liquids on my way out of the airport (also smart since I ended up in NYC traffic for over an hour).
When I got home and cleaned up (good-bye toilet paper undies), my BG was still hovering in the 200s, so I changed out everything with the pump again. I then called Animas and had them go through any and all diagnostic testing they could do over the phone. My next call was to my doctor since I still felt like I’d been hit by a bus and then dragged for awhile and high ketones. When I told her how I’d used the light on my phone to grab a syringe out of my make-up bag, my doctor told me she was proud of me. She said how lots of people on pumps don’t have syringes on them at all times. I had been one of those people. For some unknown reason, in the past year, I started carrying 2 syringes in my travel bag. So yeah, I may not be diabetes perfect, but when push came to shove, I was smart. No wait. I Am Smart.