Happy Friday everyone! And a happy Labor Day to my US friends too! I’m not sure how it got to be the end of summer already but here we are … September is approaching and pumpkin is everywhere 🙂
I am taking Kerri’s lead today and posting about a very important issue. The Strip Safely campaign is well under way. But there is something else that is needed from us to ensure that the tools we use to manage our diabetes is taken very seriously by the FDA. They are planning future patient meetings on various diseases and conditions to better understand them. Don’t you think they need to get a better view of the challenges of living with diabetes and how the tools available play a huge role in that? Don’t you think since the number of people being diagnosed with diabetes keeps growing and growing, a solid understanding of this disease from the people who have it would help? I do. And I’m sure many of you would agree. So let’s get together and make our voices heard. Take a few minutes to sign this petition, please. And pass it along. We need 5,000 signatures so get to it!
Please sign here.
Two posts in one day. Another first for me 😉
Strip Safely. This is a fairly new collaboration within the diabetes online community to spread knowledge about the fact that the glucose test strips we use today, yes in 2013, are not completely accurate. I have known this and it is an issue that bothers me greatly. I think about all the people with diabetes who are not aware of an issue like this. Those that are outside of the diabetes community. Those that take their BG readings for granted. And it can set someone up for major tragedy. Since I know my BG meter is not 100% accurate, I always double and triple check if I get a questionable reading. Too high or too low or totally off from my Dexcom, continuous glucose monitor. Someone who is naive to meter accuracy, would go ahead and dose insulin based on a questionable reading. That could lead to an immediate danger of an insulin overdose or not administering enough insulin which could lead to high blood sugar and the subsequent complications.
I don’t want to go back to the days of urine testing where you knew in what “range” your sugar was. When I was diagnosed in 1981 that was the method used to test glucose levels. You peed on a strip (similar to ketone test strips) and your urine turned it a certain color depending on how much glucose was in your urine. Probably from hours ago. That color represented a range of readings. When I bolus from my insulin pump today, it doesn’t ask me what range my blood glucose is. It asks for a specific reading that is used to calculate a precise amount of insulin needed to either correct a high or cover carbohydrates. Carb counting and insulin dosing can be difficult enough at times without factoring in an inaccurate blood glucose reading.
Every single thing about diabetes management lies in the blood sugar. How can one possibly manage blood sugar if they do not know with certainty what it is? The answer? One cannot. And when people’s lives are at stake I can’t think of any better reason to campaign for better test strip accuracy and oversight over that market.
Take the time to write a letter to your elected officials. Urge them to attend the Diabetes Technology Society meeting taking place on September 9th. Tonight on Twitter, there is a special time designated between 8 and 9pm, EST, to tweet about this issue to your elected officials. They need to be aware of this important issue. We need support to get this resolved. Don’t forget to use the hashtag #stripsafely
A couple of weeks ago, I turned to my friends and readers to help me choose a new medical alert bracelet from Lauren’s Hope. The winner of the “contest” was the Olivia and I received it from the team over there a few days later.
This bracelet is absolutely beautiful. Purple and grey are my favorite colors so this is perfect for me! It’s a pretty, dainty style but not too much for every day wear. I thought maybe I wouldn’t like the three strands but I actually do. It’s quite comfortable. I’ve been wearing it every day since I received it and I see no signs of that yet.
Now for the surprise. The team over at Lauren’s Hope would like to offer an opportunity for you guys as readers, to get your own medical alert! There are three ways you can participate. 1) leave a comment on this particular blog post 2) tweet about this giveaway using the hashtags #ppggiveaway and #laurenshope 3) leave a comment on my share of this post on Facebook (for my friends). At 5pm on Thursday July 18th, I will randomly select a winner of a $50 gift certificate to use at Lauren’s Hope for your choice of a medical alert accessory.
The winner will be announced here on Friday, July 19th. If you happen to not be the winner, you can still get 10% off a purchase using the coupon code FAN.
Good luck!!! 🙂
Medical alert bracelets. They are certainly not what they were 30 years ago when I was a child first diagnosed. Or even 10 – 15 years ago as an adult, veteran person with diabetes. Lucky for us that are in need of some form of medical identification, there are organizations like Lauren’s Hope that offer such a wide variety of ID’s that are actually quite nice looking. Pretty, if you will, for the ladies.
I have been wearing the same Lauren’s Hope medical alert bracelet for probably about 2 years or more now. It’s been with me through showers, getting tattoos, illness, workouts, daily commuting, sleeping, in Costa Rica, Barbados, North Carolina, Indianapolis, Boston. I love it and get a lot of compliments on it. Fortunately, I have never needed to use it other than to point it out to a TSA agent in a foreign country. But I like the peace of mind it gives me that the information is there should I need it. However I tend to get bored with my accessories and like to have a variety. Lucky for me my friends over at Lauren’s Hope are offering to provide me with a new one so that I can try it out and review it for my readers! But I need your help. I cannot decide. They have so many to choose from, that fit my taste even, that I was hoping you could all vote for the one you like best. Once I receive the chosen bracelet, I will put up a product review for all of you. And there may even be a surprise for you later on!
Below are the three bracelets that I like. Please leave a comment here on this post with your choice. All comments must be received by this Friday, June 21st at 3pm EST. I appreciate your help! And if you haven’t already, take a look at what Lauren’s Hope has to offer. I’m pretty sure you’ll find something you like 🙂
Shades of Silver
*Please note that although I am receiving a product from Lauren’s Hope at no charge, I am not being paid otherwise. The opinions of their products and services are my own. I think it’s unlikely but if I happen to dislike the bracelet I receive, I will be honest about it and include that as part of my product review.
I am way overdue in posting this. I finally had some downtime (see also: being sick. again.) and figured it was about time I wrote about my time at the Diabetes Sisters Weekend for Women conference at the beginning of this month. This was my third year attending and you can find my posts about previous years here and here.
Like the past conferences, I had a wonderful time. I don’t think you can find any more solidarity than being surrounded by about 100 other women with diabetes. It doesn’t get much better than that 🙂 There were sessions about learning to love exercise from the fabulous Ginger Vieira, how to ignite your diabetes power from the legendary Riva Greenberg, information on dietary supplements and how they affect or do not affect diabetes, the down low on diabetes technology from Amy Tenderich of Diabetes Mine, unlocking the secrets of a long, happy life with diabetes, creating better relationships marriages which was a very open, intimate conversation with the likes of Kerri Sparling. Our keynote speaker for the weekend was Mother Love. I admit, I didn’t know much about her before meeting her there. But let me tell you, she is one funny woman. She also brought to light for all of us how it is important for us to take care of ourselves. Something that all of the attendees were doing by attending the conference! There was also the annual Orange Will walk to start the day on Saturday. It’s always nice to see a group of people walking for a cause.
Something new this year were offsite field trips – one option was a tour of the Inter-Faith Food Shuttle Teaching Farm in Raleigh and the other option was the Novo Nordisk insulin manufacturing facility in Clayton. I opted for the Novo Nordisk plant and was so glad I did! It was phenomenal to see how they manufacture something like insulin, that is a life saving medication used by so many people. Talk about a high standard of sterility! It gave me a new appreciation for the people who take their job very seriously to give us that life juice 😉
I honestly think the most valuable thing about this conference is the relationships that are built. The friendships that are made. The deep camaraderie that is felt. The entire weekend concentrates on how to make you better. How to make your life as a woman with diabetes more manageable. How to help you feel less alone. And living with diabetes, who doesn’t need that?
In case you missed the conference in Raleigh, or live closer to the west coast, there is also a conference coming up in October in San Francisco. Check it out for more details.
So it’s officially the last day of Diabetes Blog Week. I tried really hard to keep up every day but got a bit lost toward the end, resulting in missing two days of posts. Thank you so much Karen for organizing this event, getting us to put our thinking caps on!
If you want to read all the great posts for all the topics (ya know if you have quite a few hours on your hands!) check out this link: Diabetes Blog Week 2013
I’m actually going to go back a day to Day Six’s topic.
This year Diabetes Art moves up from the Wildcard choices as we all channel our creativity with art in the broadest sense. Do some “traditional” art like drawing, painting, collage or any other craft you enjoy. Or look to the literary arts and perhaps write a d-poem or share and discuss a favorite quote. Groove to some musical arts by sharing a song that inspires you diabetes-wise, reworking some song lyrics with a d-twist, or even writing your own song. Don’t forget dramatic arts too, perhaps you can create a diabetes reality show or play. These are just a starting point today – there are no right or wrong ways to get creative!
Now I don’t consider myself very creative. I’d say that my favorite form of art is photography. So many photographs are quite beautiful to take in. I think a picture can tell a story without the terminology. It can evoke emotions unlike words sometimes. And they can portray a wonderful moment in time that you always want to remember.
One of the greatest things about the diabetes online community is that it comes to real life at times. Those times that I get to spend, in person, with my diabetes friends is invaluable to me. The support and and camaraderie from everyone out there helps me keep my head straight a lot of the time. And whenever I can relish those relationships offline, it is always a good time to remember. The pictures below are from the Diabetes Sisters Weekend for Women conference that I attended two weeks ago. The first is of all the women who attended and bonded that weekend. The second is of all the attendees who were able to make a visit to the Novo Nordisk plant to see where insulin is manufactured. These moments for me, are always etched in my heart.
(photo credit goes to Diabetes Sisters)
Another order of business that I have been meaning to mention here. Sanofi is supporting the Diabetes Hands Foundation – when this documentary reaches 10,000 views, they will double their initial $10,000 sponsorship. It’s a great documentary and I’m hoping you’ll take a few minutes to watch yourself.
Strength in Numbers.
A day behind but here is my post for day four of Diabetes Blog Week.
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’ve given this topic some thought over the past few days. So much has changed over the past 31 years, mostly for the better, with accomplishments along the way. I found it hard to pick just one thing. The first thing that came to mind was my more recent A1c track record of being under 7%. Then there is my retinopathy not progressing over the past 18 months. Or walking about 3 miles with excruciating pain in your legs and numbness in your feet from neuropathy seems like quite an accomplishment at the moment. Even exercising 4 times in one week can seem like something to be proud of for me. There are even the graphs of 24 hour no hitters on my Dexcom. I certainly celebrate all of those!
What I came to realize is that all of these things together is what my accomplishment truly is. Living with diabetes for 11,452 days and doing pretty well. Going through the motion of checking BG, dosing insulin, counting carbs multiple times a day, every single day. Forcing juice down my throat when I feel like I’m going to puke to keep myself alive. Moving along with my day when my blood sugar is high and all I want to do is drink, pee or sleep. Keeping up with routine endocrinologist appointments. CDE appointments. Eye doctor appointments. All the other diabetes health related appointments. Picking up prescriptions every few weeks or month. Keeping tabs on insurance coverage for said appointments and prescriptions. And doing all these things for so long without losing my mind. Even finding happiness between the lines. Not to mention making tons of great friends along the way. This is what I have accomplished and it feels pretty darn good.
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.
Some people are sharing their diagnosis story for today’s topic. I don’t really remember my diagnosis since I was only 5 (and have a horrible memory!). Some are sharing stories of scary low or high experiences. I am blessed to not have any true life or death experiences to share. Some may be sharing successes worth celebrating or of friendships made worth cherishing. While I do have some of those, I have a more memorable day relating to diabetes. I usually focus on the positive and do not like to dwell on the negative. I hope if you know me, you have picked up on that. However, the most memorable day in my diabetes world happens to be a very sad one. The day my father passed away.
Some people may even be sick of hearing about this. And I apologize if that is true. But that day, my life changed forever. Not just because I lost my father. But also because what caused his death was diabetes. The very disease that I live with and have had for almost as long as he had. As much as I remind myself that things were different during his diabetes lifetime. As much as I tell myself that his tools were very unlike the ones I use today. As much as I try to focus on my attitude being different than his was. The fact still remains that diabetes took my father’s life. Even before he died. And that will forever be etched in my soul.
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?
Diabetes is freaking expensive. Those of us living with it, know that. Even if you have insurance, it can still be costly. Insulin, test strips, needles, insulin pump supplies, ketone testing products, Glucagon-Like Peptide-1 (GLP-1) Receptor Agonists or Biguanides, adhesive products, lancets, glucose goods, CGM sensors, office visit co pays, the list seems to go on and on. I have been *extremely* fortunate to have good health insurance both under my parents and since I’ve been working on my own. I know some people with diabetes who do not have health insurance at all. And I cannot even imagine the financial burden that can cause.
For about 16% or more of the population in the US that are uninsured and those who have insurance but still carry a hefty bill every month, I would love to start a petition that would establish a statute that provides affordable diabetes supplies to everyone without any restrictions. I know this would be a tremendously daunting and complex effort. I know there needs to be money in order to make this happen. I know some of this could be addressed with the Patient Protection and Affordable Care Act which began in 2010. But I wish something like this could seriously be implemented. None of us asked for this disease. None of us could have avoided having diabetes. None of us planned for a certain (large) percentage of our earnings to be spent on diabetes. None of us want to be stuck in a job strictly for the benefits. None of us want to be told how many times per day we can test our blood sugar. To live a healthy life with diabetes, there are many tools needed and those tools cost money. And I wish for so many people that wasn’t such a hardship to them.
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?
My diabetes health care team consists of two people for the most part – my endocrinologist and my diabetes educator (CDE). I am fortunate to consider my relationship with both of them pretty darn good. I spend more time with my CDE, M, at each visit (although I hate to admit it’s been a while since I’ve seen her) since we go over in more detail my blood sugar readings, glucose monitor history and other records like food and exercise. My endo, Dr. K, goes over things with me at more of a high level. Since M and I do a lot of poking and prodding while together, I feel like she has a true sense of my day to day management. I also talk more with her about my advocacy efforts, social media involvement included. With that being said, I think there is something that I would like Dr. K to know.
I’ve started with minor complications. And this seems to surprise Dr. K. I’ve only been seeing her for about 2 years. (I’ve been going to that diabetes practice for about 15 years but Dr. K took over for my old endo when she left for a different practice) For this reason, she has only really seen the better side of my diabetes management. When I first began being treated here, I was on MDIs of a sliding scale with an A1c in the 8%-9% range if I had to guess. Then around 2006, I got much more serious about things and got an insulin pump. It was ever so slow progress, but over the years since then, there has been improvement in both my A1c and my overall management. Maybe in her eyes, this is how I’ve always been. But I haven’t. I’ve also have diabetes for 31 years. This is a long time of high and low glucose levels. Much of that time with higher than desired levels for various reasons. These things can lead to complications. I’ve seen what can happen through my father. And I am scared to freaking death of that. I’m doing everything I possibly can, now, to keep the complications to a minimum. I sincerely appreciate her goal of keeping my A1c at a desired level, without too many lows, to keep my diabetes health in check. I’m very glad she realizes the importance of that in this stage of my life. But I’m not sure why she’s surprised at what has started in my body. I don’t think she’s ever asked what my diabetes was like all those years ago. Maybe that would help her put things in better perspective. Even so, I’m hoping we can continue to work together to keep me alive and my organs healthy for a long, long time.