#dsma

Insulin Angels in Hotel Mini Fridges

Please note: I was asked as a member of the diabetic online community to provide feedback on Insulin Angel and I am happy to do so. I did not receive compensation in any form for writing this blog post.

Let’s be honest, no one designed hotel mini fridges with the intention of storing insulin at safe temperatures. I was always under the impression that the original hotel mini fridge engineer wanted just enough tilt when opening the door to rustle a few alcoholic beverages and drive up your bill.

When most people open a hotel mini fridge, their objective is to quench their thirst. My main concern, however, is just how cold the beverages in the fridge may be- because if the beverages are borderline frozen, well, so is my insulin. You’ve all heard enough of my griping about ketones to last you a lifetime, so I’ll spare you the story this time around.

Bottom line: We all know that we need insulin to survive. Insulin that is too hot or too cold compromises the efficacy of the medication, and, therefore, endangers our health. Forgetting that insulin in the fridge when going out for the day is not highly recommended, either.

Mike Hoskins of Diabetes Mine provided a detailed take on Insulin Angel, a product which will alert users to unsafe insulin temperatures and inadvertent moments of forgetting to carry insulin by utilizing that handy dandy thing called modern day technology.

While I have not personally used the Insulin Angel product yet, I feel comfortable stating why I think this concept has potential:

1. Insulin Angel’s marketing strategy catches my attention because they are reaching out directly to those who their product will help: the diabetic community. Through crowdfunding, diabetics will drive this idea. Insulin Angel understands their consumers because they understand life with diabetes.

2. Have I mentioned how I just want a nice cold iced tea from the hotel mini fridge without thinking twice about insulin temperature yet?!

3. Fun activities like going to the beach in the summer should stay carefree. Let Insulin Angel do the worrying about insulin temperatures for you; you can correct any potential insulin temperature problem early on, rather than suffer the consequences later.

4. This product offers possibilities in a world that is not always diabetes-friendly.

As an example, diabetes is often considered a medically-disabling condition of military service. Although we have heard of people with diabetes who are able to remain in service in some capacity, one big reason why the military and diabetes don’t jive well is because of the need for insulin refrigeration; this proves technically-burdensome on deployments.

While I in no way, shape, or form am implying that Insulin Angel’s product will be helpful to allow diabetics to join or stay in the military (nor do I want to start a debate here), the main takeaway in raising the example is this: Previous/current limits on diabetics- whether self-imposed or societally-imposed- may one day be lessened due to this product.

Insulin Angel has the potential to give us another useful tool in our diabetes toolkits. It eliminates one of the many “I wonder if I’m high because of ______?” factors in that we can cross “unreasonable insulin storage temperatures/forgetting my insulin at home” off that list.

Think of it what you will. In the meantime, I’m ordering my #SaveHotelMiniFridges bumper sticker.

Speak Your Mind

I’m doing some research for one of my grad classes with a focus on how the Affordable Care Act impacts quality of care. While there are objective measures of quality such as hospital reimbursement rates, I believe the patient perspective is invaluable as well. Quality, then, must be addressed and defined from the various view points of those in the health care system.

I would like to gather some patient responses prior to my presentation. Personally identifiable information will not be included, rather, the aggregate of the information provided to me will be summarized for my class.

So, if you have an opinion on how quality affects your health care, please comment here or feel free to contact me over the next few weeks.

What would you like to see change in terms of quality of care?

Do you think that the way your health care providers measure quality is an adequate representation of the type of care you receive?

Have you noticed changes- good or bad- in your quality of care since the passage of the Affordable Care Act?

Is your health care delivery environment upfront about how they plan to improve the quality of your care?

These are just starting points, but any and all information provided will be useful and is greatly appreciated.

Thanks for your help!

24. P.S. I Forgive You

You have been a part of me for 24 years– which is 8,760 days- you selfish, conniving, jerk.

You have pierced my skin over 160,000 times.

On occasion, you have damaged my kidneys and my psyche, my relationships and my view of the world.

They were freak events- both my diagnosis and the insulin pump product defects that plagued me in my twenty-third year of dealing with your crap- but they happened to me, a living, breathing human being who did nothing to ever deserve that amount of suffering.

None of us did.

Today I am not mad at you, though. I have spent enough time asking “Why?” to know that you don’t care why. You just do as you do, whatever your flavor of the week is. Sometimes the stars align and I get my insulin doses right for a day. Other times, I go to bed frustrated with myself that I didn’t do better, although I know rationally that most of this is not that simple.

I want you to know, however, that there are things that you have not taken from me in 24 years of being an unwelcome guest dwelling in my body. Through your efforts at taking, you have actually given me things: perspective, friends, academic opportunities, a passion for helping others, the therapies of writing and talking. There is some reason for all of this, and many times I have known that God- and God-sent people- were the ones who got me through.

Why did I survive a disorienting and quickly-declining 46 mg/dL blood sugar value in my twenty-third year as a type one diabetic? Frankly, without Dexcom CGM, I wouldn’t have survived, so that’s why.

Why do I read Facebook posts about children with diabetes, fighting back tears as their Moms and Dads document their struggles? Because I know that these kids will grow up to be kinder, smarter, and more considerate for having gone through it. And if we have to go through it, we might as well turn out as the type of people everyone would want to have as friends. We might as well turn the bad into as much good as we can.

Why- as I sat in a waiting room in Boston, the sickest I had ever been with persistently high blood sugar that would not budge no matter what we did, scared and alone- did a doctor sit next to me quietly? Why did she urge me to receive her treatment after I had run from it months earlier? Why was she so confident that we could do this?

Why was she right?

We are doing this, and we’re going to continue to do this- to fight back, to live well.

Why am I blessed when there are thousands of people all over the globe who may not have proper access to insulin and medical professionals? I don’t know why, but I am cognizant of this idea today, especially.

Now, in my almost twenty-seventh year of existence, I have reached marker number twenty-four with type one diabetes. It has not been easy, but it has been… something. Some people never have this chance. Some people are not diagnosed in time. Some people die waiting for life-sustaining medication.

“Some people” are people who have feelings and families, and who could have bright futures, too. Spare a Rose, Save a Child / Life for a Child get it right; those of us who are fortunate enough to have access to insulin can pay it forward with a few clicks of a mouse and a few dollars donated.

At least for today, diabetes, I want you to know that I forgive you. I haven’t had it as hard as some. In fact, I can count my blessings because of the perspective that you have given me. There will be many more times that I will scream my lungs out in frustration with your stupid games. But if I don’t forgive you right now, I will live however many more diaversaries there may be with a sense of embitterment at the life that I could have had without you in it.

Instead, today I recognize that living despite having you along for the ride is a gift in and of itself. Please know that I am going to make the most of that life. Thanks for reminding me to do so.

Housekeeping

Before I publish a lengthy manifesto on the pros and cons of insulin pumping versus injections in regards to my recent switch over to shots, there are a few long overdue housekeeping details that I would like to highlight for those interested.

1.) Meeting of the Diabetes Minds

Around Halloween, I had a big appointment with an insulin pump representative and my nurse. My doctor also sat in during her lunch break. I know that it was around Halloween because I brought a bag full of insulin pump supplies as well as Halloween cupcakes coated in frosting (see above) as sustenance for those who were kindhearted enough to meet with me on their free time. So, it was a meeting of the multifaceted diabetes minds, fueled by large amounts of sugar for those with properly-functioning pancreases.

We went through every scenario, including a live insulin pump site change. They all nodded their heads in agreement when I showed them how Humalog bubbled up quickly in the reservoir. We were all baffled as to why the Sure T infusion sets continued to pool insulin at the connector site. And so on. Basically, we knew there were problems, and we had to try to tackle them each individually.

2.) Sure T infusion sets

Regarding the Sure T, I have said it before and I will continue to say it: I like Medtronic. Their pump rep nurses were as gentle as possible when we did the “human pincushion” trial and error game of inserting into different sites during appointments over the past two years. Those days were not easy for any of us, on a mental and physical level, but their confident reassurance that it was going to be okay is something that I will always carry with me. Medtronic’s customer service is timely, polite, and helpful. One manager in particular has logged dozens of hours on the phone with me while we documented and troubleshooted what we believe to be a rare Sure T product defect. Medtronic has sent me various lot numbers of Sure Ts to try, and I have sent them back my problematic sets for analyses, the results of which are still to be determined.

In a nutshell, we have tried repeatedly to make the Sure T work for me, but maybe the Sure T doesn’t like people with very light, no sugar coffee orders. Sure T might perform better for a different diabetic coffee enthusiast on a different day. You tell me.

The recent product warning sent out by Medtronic is believed to be unrelated to my issue. See image above; note that insulin droplets pool at the connector site and do not get into my body. The proof is in the sugar-free pudding: after many site changes, subsequent ketone spikes, stubborn high blood sugars, and droplets of insulin falling out at the site, we have decided to hold off on using the Sure T until new lots are manufactured in the future. Although I like the steel needle aspect of the Sure T, as bent cannulas cannot occur, if/when I transition back to the insulin pump after doing multiple daily injections for awhile, I will most likely give the Medtronic Quick Sets another try.

Whenever I switched a Sure T site out, I always ate low-carb for a few hours afterwards in case the insulin was not getting into me. My fear is that someone who is unaware of this risk might consume a big pasta dinner and have an infusion set failure unbeknownst to that person, leading to a very dangerous situation very quickly. I disclose this information so that you are at least aware of this potential problem if you also use Sure Ts.

Note: If you experience any insulin pump problems, please contact your respective pump company so that they can document the issue and investigate safely.

3.) Bubbles in insulin pump reservoirs

I detailed this extensively in Broken Record, but to summarize briefly: These were more than champagne bubbles, they blocked proper insulin delivery, and they caused blood sugar to stagnate at high levels until the problem was identified and the reservoir changed out.

A Facebook user recommended that I pre-fill a reservoir a day before an expected site change, let it sit undisturbed to allow big bubbles to settle, and then prime those bubbles through the tubing on the day of the site change. For some reason, letting the reservoir sit for a day helped immensely. I also found that Novolog produced bigger bubbles which were easier to eradicate than Humalog’s millions of feisty bubbles which had a knack for procreating over time. Get a room, Humalog love birds!

Please note that this trick is not recommended by pump companies, as insulin has been shown to lose efficacy over time in the plastic reservoirs. However, given the frequency and degree of problems I encountered with pump site changes, I found that pre-filling the reservoir was a risk I was willing to assume, and I was always cognizant and on the look-out for problems related to this risk. So far, the benefits have outweighed these risks.

I hope that this update is helpful to anyone who was curious about the possible solutions identified for my insulin pumping problems. Thank you again to all who offered encouragement and advice along the way. More to come soon with a post chronicling the transition back to insulin shots. Yeehaw!

November: 166,650.

Diabetes Awareness Month is finally here! I’ve stocked up on blue apparel and drafted, re-drafted, deleted, expanded, and re-visited my Facebook status updates, tweets, and so on for World Diabetes Day on November 14. Being new to the diabetes blogosphere/social media arena, I feel the importance of November, and specifically November 14, more so than I may have in the past. This is our day and our month. I’m clearly biased here, but I do not believe that diabetes gets its fair share of attention in society and in the media. Take a gander at my diabetes rant if you want my heated feelings on the matter.

I am truly happy for other organizations and causes that garner lots of fanfare during their designated months and days. Seeing the State House lit up in pink for breast cancer awareness month in October as a simple gesture of solidarity for the cause always puts a smile on my face. My siblings’ delight in dumping ice water all over me for the ALS Ice Bucket Challenge is a fond memory for our family, and it is also a reminder of those very brave individuals who battle an insidious disease every day.

As human beings, we all suffer. Lots of us have health conditions; others, financial troubles; some, relationship issues; many, a mix of a multitude of things. Connecting as human beings to support one another in our moments of pain and in our moments of triumph against such pain is all part of the human connection. It is time to make that connection happen for diabetes, and the diabetic online community is certainly capable of moving mountains to do this.

There are various creative diabetes awareness efforts going on right now. I am all for anything that supports diabetes in a positive way, and I truly enjoy participating in various efforts when time permits me to do so. However, we are also a bit fragmented as a group- not because we want to be, but because the options are too vast and our passions for advocacy too wide and multifaceted. This is not necessarily a bad thing. It speaks volumes about us as an intuitive, determined community. We are always salivating over new and improved ideas for advocacy.

Rather than making things more complicated and diluting the already-expansive efforts to raise awareness, I’m going to put a simplified twist on an old diabetes advocacy message. We have all seen those posters outlining how many injections, pump site changes, finger pricks, etc. that a diabetic has endured over his or her lifetime. Those posters always knock the wind out of me- no matter how old the person holding up the sign may be. There is a universal truth to these visual aids: One shot is one too many. If we cure diabetes, there will never be another “first shot” of insulin for so many out there whose islet cells may one day rebel. Sadly, as we all know, the shots are sometimes the “easiest” part when it comes to diabetes. Again, #1ShotIs1TooMany.

We can live in a world without diabetes. It is a matter of hard work, advocacy, financing, and research. As the doc, we already know the ropes when it comes to informing others about our daily lives with diabetes. But those who do not live it firsthand- who do not wake up at 3:14 am to change failed pump sites, who do not feel the burn of injecting into scar tissue, who do not wipe their child’s tears during a bad low blood sugar- have perhaps not been exposed to the reality of diabetes.

My tactic is simple: “Shock and awe” is good, occasionally. From a marketing perspective, tease your social media followers a bit. Engage them by throwing out the line and seeing if they will bite. I plan on posting my picture with the blue diabetes awareness circle etched in using the World Diabetes Day app. In Paint or a similar program, I will then write in blue the number of needle pokes I have endured over 23 years as a type 1 diabetic.

As an anxious person, there have been times in my life where I would perform blood glucose tests upwards of 25 times per day, so my number of pokes is quite large, and it is most likely an underestimate. To figure out my number, I scribbled crazy mathematical break-downs to include “hundreds of shots in this timeframe, then switching to the pump during this year, then testing more or less, etc.” The final number- 166,650– is my very best educated guesstimate. What are your numbers? We are all so much more than the daily pokes and prods, but they have also permanently marked us as strong individuals. Let’s celebrate this concept with others, and let’s vow to find a cure so that the next newly-diagnosed person is not sentenced to years of replicating our needle tallies.

When people chomp at the worm on the end of the hook, I will clue them in as to what diabetes is all about. I will explain how it is not caused by cupcakes, how much it pains me to see the worry on my friends’ faces on the bad days, and the other ins and outs of taming a sadistic autoimmune beast every day. Then I will tell them about the good stuff: the #doc, #dsma, the doctors and nurses who have refused to give up, the fact that it is not too late to work towards a cure.

When it comes to advocacy this month, do what works for you; support the message that resonates with your own diabetes struggle. If you hear a diabetes joke at the local ice cream shop, politely inform the misguided comedian that his material is outdated based on modern science. Foster a conversation about diabetes with someone who may be misinterpreting what it means. Wear blue. And wear your heart on your sleeve while doing so.

#BigBlueTest

The last month or so has been a balancing act of sorts made more difficult by the fact that my balancing skills ended decades ago after a few too many tumbles-gone-wrong in kindergarten gymnastics class. Work was stacked up on my desk, and many days I found myself slouched in my chair at lunch, reading feverishly before grad class scheduled for that evening and picking at a salad and a half-eaten salami sandwich. I’d break away for 5 minutes to get a very light, no sugar coffee, but that was the extent of things. Exercise? I don’t have time for that! echoed around the tired spaces of my head.

I kept hearing of the Big Blue Test and shrugging it off as something that I’d like to do one day when life wasn’t a three-ring circus trying to fit four rings of obligations into a tiny amount of time. When Laddie over at Test Guess and Go suggested that I give the Big Blue Test a try, I tucked her words into the back pocket of my mental toolkit for a few minutes, procrastinating yet again when it came to exercising.

I Google-searched Big Blue Test, promising myself to throw in the towel if signing up was even remotely challenging. In hindsight, it was thankfully quite easy to register. Big Blue Test is free; it encourages you to get off your bum and move around; and it fosters a good conversation about diabetes and exercising. It’s a win-win-win-win-win-situation, and you can also encourage others to join in on the fun. You can download the phone app, answer a few questions (whether diabetic or non-diabetic) each time you work out, and $1.00 towards diabetes efforts is granted by the Diabetes Hands Foundation for each exercise log that you make.

I have found that this app holds me more accountable for leaving my desk to stretch my legs for 15 minutes at work. The ten second practice of entering the data into the app makes the process fun and rewarding; watching blood sugars drop from even 220 to 205 in 15 minutes is still a little victory for diabetics versus the diabetes monster. Take that, diabetes!

I may have felt like the world would collapse without me typing up a storm at my computer for 15 minutes prior to the Big Blue Test, but, no surprise here, the world moved along just fine and I was able to enjoy the nice fall weather when taking my weekly walks. Friends have joined me and we have some great diabetes discussions on our walks after I explain the meaning behind the Big Blue Test. Krissy over at Krissy’s Dance and Fitness Studio in Rhode Island is helping out our cause by logging her workouts and asking her clients to do the same. Coworkers have risen to the occasion to keep me company on my strolls through the city.

“So, do you have to take shots?” one walker asked.

“I used to take a lot of shots, but now I have an insulin pump,” I explained, lifting my shirt to show him the “pager” part of the pump.

(Don’t worry, I spared him the dramatic war stories of my insulin pump experiences in recent months for now. Baby steps…)

In all seriousness, though, moments like that help our mission to spread awareness of diabetes. They get people thinking outside of the misguided media portrayal of the disease. They inspire others to stay healthy by working out with us and giving to a great cause in the process. There is all good and no bad by participating in the Big Blue Test, as far as I’m concerned.

Lastly, those walks make these moments quite salvageable:

Nurse, while flipping through my blood glucose logs from the past week: “So, cheese and crackers for dinner almost every night…? And ice cream sometimes? I mean, you did pretty well with your blood sugars, but still…??”

She wasn’t being judgmental, rather, she was rightfully concerned that a fully-nutritious meal definitely wasn’t happening on school nights.

Me: “Yeah, it’s called the ‘grad school special.’ Plus, I ‘worked out’ this week…”

#BlueFridays

My coworkers and I are hamming it up for Blue Fridays. And no, that isn’t Sean Connery, but Manny could definitely pass for him! Hands off, ladies!

My friends spotted Manny in blue this morning and excitedly told me to take his picture.

“What’s this all about?” he asked.

I explained how we wear blue to support diabetes awareness on Fridays, and how November is our month. Everyone within ear’s reach of the conversation thought that it was a great idea. It is nice to see their enthusiasm for a good cause, and I am blessed to work with such supportive coworkers who I consider close friends at this point.

I am hoping to organize a “Wear Blue for Diabetes Awareness” day at work during November. If possible, I would like to email a list of a few pertinent diabetes facts out to the office so that people may understand the differences between the various types of diabetes and the need for more research. Finally, I want to personally pledge to donate $1.00 towards diabetes-related projects for each person who wears blue on the designated “blue day.” It may not be much, but it is better than nothing. And if people stop and really think about what it means to live in a world with diabetes, then the purpose of wearing blue and uniting to support diabetics has been accomplished in its own small way here and now.

Any creative ideas of which projects to consider? I have my own personal favorites, but I would like to learn more about any and all good diabetes research/treatment/advocacy going on, and I will take all suggestions into consideration.

Hope you all have a fantastic, healthy weekend! Stay classy, DOC!

Happy One Month Anniversary!

Wow- it’s really been one month since Very Light, No Sugar got dropped off by the stork and fell into the internet world?! First of all, I want to say THANK YOU to everyone who reads my blog. While I am probably not a blogging superstar by any means, I am happy to report that SOMEONE OUT THERE READS THIS! That, in and of itself, has helped me immensely to not feel so alone with diabetes.

The same concern from the very first day of kindergarten- “Will anyone like me?”– translates over into adult life, too. So, to those who do like me, thank you. It is a pleasure to get to know you through our shared connection of diabetes, and through the general connection of our roles as human beings supporting one another. It has been quite therapeutic to have someone to talk to here, to hone my writing skills that my talented English teacher, Ms. O’Neill, spent countless hours instilling in me during high school, and to connect with all of you. I have thoroughly enjoyed reading your blogs, your tweets, your Facebook posts, and the like.

On the bad days, you are the motivation to keep on truckin’. On the good days, I am happy that we all celebrate our moments of victory together. I have learned so much from you- more than any medical book could have ever taught me. You helped to troubleshoot my pump issues, analyzed proper sick day protocol, and so much more. Your wealth of knowledge of one of the most complicated diseases out there never ceases to astound me. You know diabetes because you live diabetes. You cannot put a price tag, or even a graduate degree, on such intimate understanding of a chronic illness. I wish that we did not have to comprehend exactly what the other person means when it comes to diabetes, that we did not have our own diabetes vocabulary, that this would be cured overnight for us, and that none of us had to suffer difficult times. But if we have to go through it, I am so happy to be doing so with some of the best people around.

My one regret is that I did not start this process sooner. I suppose I had to build up the confidence to give it a go, and I am so happy that I did. It helps that those in the diabetic online community (#doc) were so welcoming in letting me be a part of their diabetes social media advocacy (#dsma) efforts by expressing what being diabetic means to me. I promise to pay it forward to other “newbies” in the future whenever possible. I want to specifically express gratitude to Craig @HumnPincushion and Jere @integraljere for rooting for me in the very beginning. Sometimes all it takes is knowing that you have a little support out there, and it gives you room to grow. You both exemplified this for me, and I have learned a lot from your kindness.

Cheers to you all, and keep doing what you do in terms of our ongoing diabetes discussion. It means something to someone out there, especially on the sick days.

Thank you for coming into my heart. You’re officially stuck there, just saying.

Love,

Ally

“Thank A Friend Day.” Just Because.

Not that I carry oodles and oodles of internet power here, but if you are reading Very Light, No Sugar right now, I invite you to participate with me this week in thanking a friend who has supported you in your diabetes journey over the years. These people make life with diabetes a bit easier for us through their patience and generosity of spirit. I have many supportive friends and family members, but out of everyone, Ashley has always shown a keen interest in diabetes and in helping me to advocate for our cause.

She has a secret fan club of doctors and nurses at my diabetes clinic because I have admitted that I bolus more insulin around Ashley. I am simply more comfortable because she has seen it all- the highs, the lows, the bad moods, and the goofy ones. She knows what to do if something goes wrong. And most importantly, she understands a lot about diabetes in a world where not many others fully grasp what it means to deal with this disease every day. It is difficult to articulate what it entails to have a best friend like Ashley on your team while managing diabetes. Let’s just say that it’s worth a whole lot; we don’t want my mascara to run everywhere now! Ashley’s selfless nature has earned her the “Thank A Friend Day” award in my book. Thank you, Ash!

This is us having our own party in a hotel in Rhode Island after losing power for days during a massive snowstorm in 2013. I know, I know- we are reallyyy cool people…

#FreeDiabetics

I love this movement because it is short and sweet (pun intended).

Check them out at: https://www.facebook.com/freediabeticsmovement and @freediabetics_

We live in a world very much capable of finding a cure for diabetes, but it will take lots of prayers, research, financing, and determination. Until then, diabetics are imprisoned in a state of constant vigilance regarding high and low blood sugars. There is no parole when it comes to type one diabetes. #weneedacure

Side Note: Very Light, No Sugar suggests looking at Faustman Lab at Massachusetts General Hospital and donating whatever you can- even the $2.00 that you would normally spend on your morning coffee- to help us to one day rid the world of diabetes.

http://www.faustmanlab.org/

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