I’m guest posting again today! Since Allison so kindly guest posted for my diaversary a few weeks back, I decided it was time to return the favor!
While Ryan & I were in Boston a few weeks ago, I was lucky enough to meet up with Allison & her husband Erik. We didn’t meet for long but it was nice to speak to someone from the DOC whom I’ve chatted with online for quite some time. We both came away from our meeting with some thoughts. It made her write this post about dealing with guilt when it comes to diabetes. It also made me write this post about my long term diabetes goals. I promise I’ll be back here writing soon! What would you like to hear about? Diabetes? Triathlon training? My emergency dental appointment? The wedding? Let me know and I’ll see what I can do! xo
I’m guest posting again today! Since Allison so kindly guest posted for my diaversary a few weeks back, I decided it was time to return the favor!
First word? WOW! I’ve been wanting to read Scott‘s book since I first heard it was being published. It was on the wishlist I keep for when Ryan needs a gift idea or we just have a few extra bucks lying around for a “luxury” purchase (when did books become a luxury purchase? WHY DO I FEEL LIKE AN ADULT?!). Well, thanks to Tony and his #FreeShitFriday, I didn’t have to wait any longer. Tony had asked via Twitter what book about diabetes you’ve been wanting to read but haven’t. I immediately responded that Life is Short, Laundry is Eternal was A#1 on my “To Read” list (for all books really, not just ones about diabetes!) Well, by Tuesday my book had arrived (thanks again Tony – you are the best!) and while I was anxious to read it, I was in the middle of another book that I was enjoying (anyone else out there read The Celestra Series by Addison Moore? Loved Book 1. Will read book 2 soon. Would love opinions!) and honestly, I’ve had a terrible book hangover since I read Jodi Picoult’s “The Storyteller” in March. Well, it feels great to say I’ve read 2 books in a week and I think I’m back to stay on the reading train for awhile. With that said, I’d like to tell you all about how much I loved Scott’s book and why.
I must start off by saying that this book will make you laugh out loud AND cry so be wary of where you read (if you care about such things. I don’t. Hence why everyone at the gym now thinks I’m a weirdo who cries and laughs while riding the stationary bike. Whatevs.). I was struck immediately by Scott’s honesty. He wasn’t scared to tackle any topic (sex, gender roles, how unprepared he felt for parenthood etc) and the love for his wife and his family was actually palpable.
I loved Scott’s writing style. As I stated it was honest yet also educational and self deprecating. It was real. It was like having a conversation with a friend. For the first 75% of the book before diabetes enters the picture he talks about how we wooed his wife, how they got pregnant the first time, learning to be a parent and so on. But I loved reading about when he took Cole to Barack Obama’s inauguration or to the zoo to watch the lions feed. There was so much detail that not only could I picture it in my head, I could feel it my heart and it was almost as if those memories were my own due to their vividity. I was simply blown away by how amazingly talented of a writer he is.
Then Arden was diagnosed with diabetes. That’s when I cried. I cried for the fear and despair that Scott felt. I cried for a life that will never be “normal” for Arden. I cried for my own diagnosis. But I cheered when Scott got blunt about diabetes. Instead of getting technical with medical terminology and acronyms (which is more or less the day to day conversational speech when you have a chronic illness), he made a simple comparison. He discussed how the one thing keeping his child alive was also the one thing that could take her life if the proper calculations aren’t made. I won’t lie, I try not to associate my mortality with diabetes. More or less because in order to survive I can’t constantly be thinking about how I’m dying every minute and instead I need to focus on caring for myself to the best of my abilities. He found a way to say to the world that diabetes sucks. And it’s scary. But you do what you have to do and you keep on keepin’ on. And I am so grateful for that. It not only changed my perspective a bit and will prevent me from downplaying the seriousness of my disease but it was more a giant lesson from the DOC that I am not alone.
So, if I can say one thing to anyone reading this blog right now, it’s get out and read this book. And then pass it on. It doesn’t matter if you do or don’t have children or if you do or don’t have diabetes. Everyone can take something away from this book. What are you waiting for? Get reading! Oh, and make sure to follow Scott AND Tony on Twitter! xo
Disclaimer: While I did not pay for this book, my opinions weren’t swayed by this fact. Nor were my opinions requested by Tony or Scott. Just so y’all know, I would’ve loved this book even I paid $100 for it.
We have met with several caterers so far and still haven’t found ‘The One.” Honestly, it’s growing slightly disheartening. Our original plan was for a boxed lunch. Something that looked like this:
We had intended to have a sandwich, a salad and something sweet, perhaps a fruit cup, in each box. We thought this was a really cute idea, would help cut down on cost and mix brilliantly with our picnic theme. We set up consultations with a couple local places that we thought would be a perfect fit for us. We checked out Burlington Bay, New Moon and Sugar Snap.
Burlington Bay was our first appointment. It went well and Caitlyn was great and open to what we wanted. The turnaround time for a quote was quick but we were astounded at the price. We immediately let her know we’d be going in a different direction.
We met with New Moon the following week and we met with Matt. He was super excited about our idea and sure that New Moon was gonna be the place for us. It then took him a week and a half to get us a quote, which was unacceptable enough since he promised one in 3 days but then he quoted things we didn’t ask for (we were very specific about NOT wanting potato chips OR cookies in the boxes and we also asked for a vegan/gluten free option which we didn’t get) and we were no longer interested.
We met with Sugar Snap the same day as New Moon and Jess was most excited about this meeting. not only had she had their food on a few occasions, she’d worked an event for them last summer as a favor for a friend and everyone was so wonderful. Plus their food options were much more aligned with our wants and they donate a portion of their profits to a local food shelf (swoon!). The meeting went great, the quote came back quickly and while it was a bit more than we’d anticipated, we did let them know they’re a contender.
We decided to go back to the drawing board. This is why we started planning early. It gives us more time to think things out and find the right fit for us. Besides the fact that we’ve both done this before, we’ve both worked in the industry. We know when you say the word “wedding” instead of “party” prices get raised anywhere from 20% to 400%. It’s disgusting actually. We won’t be bullied or tricked into paying more for something than it’s worth just because this is a wedding. We also refuse to work with anyone that tries to change our minds on what we want (it’s OUR wedding) or that takes entirely too long to return emails/phone calls (or getting us a quote) because if you can’t be relied upon to do that how do we know we can rely on you on our Big Day? So we decided to look into having a BBQ instead.
Jess found Hot Betty BBQ online and Lisa’s smiling face combined with the menu options was irresistible. She isn’t local so Jess had a phone consult (when Ryan was traveling) and they got off on the wrong foot immediately. She took Jess’s disdain for paying upwards of $15 per person for a boxed lunch as an unwillingness to help people make money. We know people need to make a profit but $15 for a sandwich, some salad and a fruit cup (when we offered to supply all containers, needed no staff , paper plates or utensils) is outrageous! She asked for our budget and we let her know for 200 people we’d love to find something for $10 per person. We let her know we were aware it on the low side, but we were being honest about what we could afford. She said she would do what she could to accommodate our wishes.
The quote came in a week later – at $18 per person! Then there was a fee for servers (which we said we didn’t need), the rental of a tent & tables for her use, plus 2 different types of tax. When all was said and done it would have been almost $6200 just for the food. That’s more than half our budget so needless to say we won’t be using her either.
So now we wait. We have been emailing back and forth with Tony at The Jones House Culinary Services who does boxed lunches on the regular and their menu options and prices look sensational. We’re eager to meet with Tony because we both have a feeling we may have finally found the perfect fit for our vision. We’ll keep you updated on how that goes. Until then, we’ve got some other names and numbers we’ll use if necessary. This has been the hardest part of our planning so far and we’re eager to make a decision. Until next time xo
A few weeks ago, Ryan and I went to David’s Bridal to look at wedding dresses. We decided to look together for several reasons. First off, I think it’s pretty clear that we’re not doing anything traditionally so we’re not worried about the “bad luck to see the bride before the wedding” superstition. Secondly, I wanted to see Ryan’s reactions to the dress. Ultimately, I want to choose a dress that makes me feel beautiful but more than the fit or look of the dress, the look in Ryan’s eyes is what makes me feel truly beautiful. So I asked if he was willing to offer his opinions and he obliged (I’m so lucky!).
On the morning of our appointment, we already hit a snag. My sister had two extra gowns for her wedding (she bought one to change into for dancing at the reception then found one she liked better. Turns out as her Maid of Honor I forgot to bring either to the wedding – oops!) and she offered them to me if I wanted them. I’d had them at the house for well over a week and had trouble resisting the urge to try them on. I had given myself a little extra time to try them on before leaving the house and giving Ryan a preview – at the very least I would know if we were on the same page. Both gowns were a bit large on me and made it hard to decide if the styles really worked for me. Ryan took one look and said, “I thought you were going to wear a short dress.” WHAT?!
Yes, we discussed what I was thinking for a dress. Rather, I discussed and Ryan listened to as much as he could (or wanted to) understand. I had originally wanted to have my dress made and was only going to try dresses on to guarantee the features I was looking for (cowl neck/low drapey back/ivory) suited my body. I’d never mentioned length in any of these conversations but I always imagined holding on to a dress loop while I was barefoot in the ocean and apparently Ryan imagined a shorter dress with no chance of it getting wet or ruined.
We hadn’t even gotten to David’s yet and weren’t seeing eye to eye. No big deal, we are FABULOUS at compromise. So he agreed to keep an open mind and I agreed to try on a couple of shorter dresses. When the appointment was over we were down to four favorites. Not a short one in the bunch! I actually think we found THE dress. I’m now working on setting up an appointment to get my 2 best friends and my sister to weigh in and then another appointment for my my mom, Ryan’s mom, Ryan’s stepmom and Ryan’s sister to weigh in with their opinions. At one of those appointments, I’ll get pictures of ME in each dress but in the meantime, here are the options. Which one gets YOUR vote?
Just like in the movie, today we’re doing a swap. If you could switch chronic diseases, which one would you choose to deal with instead of diabetes? And while we’re considering other chronic conditions, do you think your participation in the DOC has affected how you treat friends and acquaintances with other medical conditions?
Ick! The thought of this gives me the heebie jeebies! I wouldn’t choose ANY other chronic illness other than diabetes. Now that I know the difficulty of dealing with an invisible illness, I wouldn’t wish it on ANYONE – not my worst enemy. Not even people who have done REALLY bad things. Because it’s awful. And it’s frustrating. And it’s not fair. And most days, it doesn’t even make any sense. But diabetes is MINE. Every day is an opportunity to learn something new about diabetes and how best to manage it.
In the span of only 6 years, my life was torn apart and put back together again several times over thanks to diabetes. But I know what I face. And I know what I can do to make daily life manageable. The first few months of trying to figure out diabetes (with the amazing support of incredible medical staff and a family who did everything they could to help but without the DOC because I didn’t even know about it) was hell. It was confusing. I was going through a lot of other “life stuff” at the moment. But I learned. And I grew emotionally. And now I OWN my diabetes. I take responsibility for it every day. And for that reason, the thought of another chronic illness rearing its head scares the crap out of me. I know it’s a possibility since I already have an auto immune disorder that another one could strike without warning and with nothing to do prevention wise, but I wouldn’t choose anything else if I had the choice.
I have friends who fight against chronic illnesses every day – friends with Celiac, friends battling infertility and of course, my little brother who smiles in the face of adversity every day. I don’t think my inclusion as a member of the DOC has made me treat anyone differently but I think my diagnosis alone added a new dimension to my ability to sympathize (perhaps empathize would be a better word?). I know everyone I meet is fighting their own battle their own way and it’s not up to me to judge those or compare our fates or difficulties. Instead, I just remind myself to smile and be gracious to everyone that crosses my path – you never know who might need it! xo
We don’t always realize it, but each one of us had come a long way since diabetes first came into our life. It doesn’t matter if it’s been 5 weeks, 5 years or 50 years, you’ve done something outstanding diabetes-wise. So today let’s share the greatest accomplishment you’ve made in terms of dealing with your (or your loved one’s) diabetes. No accomplishment is too big or too small – think about self-acceptance, something you’ve mastered (pump / exercise / diet / etc.), making a tough care decision (finding a new endo or support group / choosing to use or not use a technology / etc.).
I don’t even know where to start on this post. I have no doubts about the things I have accomplished since my diagnosis. While on a day to day basis it’s easier to focus on the negativity that surrounds diabetes (guilt about EVERYTHING. Hating this disease. Just the general sucktitude of D etc), I find it quite easy to take a step back and marvel at how immensely proud of myself I am for what I have endured so far. I learned how to give myself shots. I learned how to treat lows. I learned how to manage this condition on a daily basis. I chose to start pumping and I chose to begin using a CGM. I chose to be with a partner that supports me when I need it yet knows when to give me space. I have joined support groups. I have blogged. I have “met” wonderful people from the DOC who just “get it.” I’ve done some really cool things because of diabetes and I am proud of my own desire to be “better.” I strive to push myself through exercise. I embrace every opportunity to educate others and eradicate the ignorance about diabetes. But my most proud moment in the 6+ years since I was diagnosed, hasn’t actually happened yet.
On July 28, 2013, I will compete in my first Sprint Triathlon. I’ve begun training and learning how to navigate the fluctuating blood sugars that come with strenuous exercise. I am developing training plans and meal plans and blood sugar regimens. I am also blogging about all of this for my local hospital (the largest Level 1 Trauma center in the whole state!) as well which just exaggerates the pride I feel – and the pressure to succeed of course, but in a positive way. I have no specific time goal in mind, only to complete it. I know I can do this. Diabetes has taught me that I can get through anything if I want it bad enough and am willing to work hard enough to achieve it, and damn it, I can’t wait to call myself a T1 Triathlete! xo
PS – My first blog post has been written, submitted and approved for publish on 5/29. You can be sure I’ll be pimping that link when the time comes!
Today we’re going to share our most memorable diabetes day. You can take this anywhere…. your or your loved one’s diagnosis, a bad low, a bad high, a big success, any day that you’d like to share.
I’ve discussed a few different Memorable Diabetes days here on this blog…the day I was diagnosed. The first time I saw a number below 200. My first ambulance ride. Going into DKA. Since you’ve read up on those, I decided to try to think of something different, a little treat for my readers if you will. So I racked my brain to try to come up with something good for you. It may not sound like much, but it meant the world to me.
The company I work for now is the 4th place I’ve been employed with since my diagnosis. It is also, by far, the most accommodating of my diabetes and everything that means (several regular doctor’s appointments, emergency appointments, wacky highs, stubborn lows etc). When I first started here, I was very open about my diabetes. I’ve never felt it was something I should hide or be ashamed of (it’s not like I could have prevented it, and informing those around you is important for any emergency that might spring up) so I answered any and all questions that people had. I started here the beginning of March 2012. The owner of the company is what I like to call a snow bird – he lives in Vermont from April until Christmas. Then he moves to North Carolina with his wife to do missionary work during the awful Vermont winters (smart man!). So I had been here a little over a month when I first met him. The first thing he asked me about was my diabetes. Turns out he has a granddaughter that is T1 and uses a pump. He was well versed in D-terminology and curious about my management – and not in a Diabetes Police way, but in a very caring way. He asked me to write up some emergency instructions and hang them up around the office so if ANYTHING happened to me, people would know what to do. I always struggle with this because basically you’re writing instructions on how to save your life – and it’s hard to take that lightly.
I typed up all my important phone numbers, what to do if I pass out (Dial 911. Suspend my insulin pump. Inject Glucagon.) I trained 3 of my coworkers how to do a Glucagon injection using an orange. I check in with those 3 on a regular basis (“Sugar has been running high. No ketones.” “I’ve been sick and have ketones, can you please take me to the ER?” “I’m low and need help getting a snack.”) Everyone is super helpful and willing to help. And this makes living and working with diabetes so much easier! I am so grateful for Fred and making sure I feel safe where I work. The first day I met him will always be one of my favorite D-memories!
Here’s today’s Diabetes Blog Week Topic:
Recently various petitions have been circulating the Diabetes Online Community, so today let’s pretend to write our own. Tell us who you would write the petition to – a person, an organization, even an object (animate or inanimate) – get creative!! What are you trying to change and what have you experienced that makes you want this change?
Well, I’m not currently up in arms over anything (someone check my temperature – stat!) so I am choosing a Wild Card Topic for today:
Back by popular demand, let’s revisit this prompt from last year! 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?
I actually have 2 Dream Diabetes Devices. One would be a pancreas that works. While we’re getting closer every day, I thought I would talk about some something a bit more tangible (although the idea of knowing my blood sugar just by thinking about it would be grand as well!). What I would love is an easy way to journal ALL the info I would like to keep track of in order to really see patterns in my blood sugar readings. I want to journal about ANYTHING that could have an impact on my diabetes – am I hydrating enough? How much exercise did I do and how strenuous was it? Those 45g of carbs I ate – was that in natural sugars or did I eat pizza? Did I do a sensor or pod change? Did I sent a temp basal? How much for how long? All those things are important to me but keeping track of it all in my head just can’t happen. At this point I can’t even calculate a bolus thanks to my dependence on my pump to do all that math for me! I have tried various apps, notes in my phone, actual physical journaling (with spreadsheets I created) and I just can’t find a system that works for me longer than a few days. So my dream device would be something akin to Ryan but robotic.
You see, I tell my fiancee Ryan just about everything I would want a journal to record for me.
“I was 252 before I got on the treadmill for a 20 minute interval workout.”
“I don’t like how low I am before bed. I am going to set a -25% temp basal for 4 hours so I don’t wake up low.”
“I’ve drank 100 oz of water today!”
I don’t know why I tell him all this. I guess it makes me feel more accountable and maybe even less alone. And while I know Ryan is listening and helping me to make informed decisions about my care, it’s not like he remembers every blood sugar/temp basal/exercise regime etc that I have ever told him in the whole history of time. So I want something that I can bounce those ideas off of and will record all of the things listed above (plus any more that I think of!). I don’t know about you guys, but a Robot Journal sounds like something that would help me and my D Management tremendously. xo
Diabetes Blog Week already? Ok, twist my arm. Here’s today’s topic!
Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your and/or your loved one’s daily life with diabetes? On the other hand, what do you hope they don’t see?
Reading this prompt made me realize I am tremendously lucky for the care I receive from both my endocrinologist and my CDE (my PCP however? Different story all together!). I meet with my CDE about 4 times a year and twice with my endo. Each appointment is roughly an hour long, with a good 40 minutes of that spent with my provider. They remember details about my life (getting married, exerciser, can’t eat fruit snacks anymore, love social media) and we always make sure the conversation has as many high points as low points (if not more). They are both easily accessible by email and I know I can upload my Omnipod or Dex and send it off for advice & adjustments at any point.
They are both aware how active I am in social media and usually have lots of questions about what’s going on in the DOC. They encouraged me to draft a proposal to the local hospital to create a position for a Diabetes Outreach Coordinator position which would help patients find the support they need right here within the community. I don’t know what D Management would look like without the DOC but could you imagine how much more helpful it would be if when D is getting you down, all you have to do is pick up a phone and you can meeting someone for coffee who “gets it?” Someone who could create networks of support not just for patients with D (broken down by age group and Type if necessary) but also for those that support us (parents, siblings, significant others etc.) I see such a need for this in my own life and I imagine I am not alone in feeling this way. Nothing has come of yet but I am blogging for the local hospital about diabetes and triathlon training so…baby steps! And I was able to join the local chapter of Insulindependence (although I’ve only attended one event – so far!) thanks to a class I attended at my endo’s office.
So basically, there is nothing more I need from my team of D medical professionals. There is nothing I don’t share with them (what’s the point in lying when the truth is in the blood sugars they’re staring at?) or feel I couldn’t share with them. I know this most likely puts me in a minority, but that doesn’t bother me at all! I urge all of you who DO have issues with the people responsible for helping you with D management, find somebody different. I know it’s easier said than done but I guarantee it will cut down on the frustration of diabetes if you find a doctor you can just be honest with and who listens. I promise. I wasn’t lucky like this with the first endo I had…xoxo