As 2011 draws to a close (and I try to believe it’s that time of year again), I wanted to wish all of you a very happy new year. My hopes for 2012, aside from happiness, health and prosperity, are advancements in diabetes technology as well as opportunities to attend more diabetes related events and keeping up with the advocacy that is so very important to us.
Learn from yesterday, live for today, hope for tomorrow ~Einstein
I wish you all the best in the new year.
*Stacey*
On Christmas eve, we held a small get together at our place. We had enough food for about 25 people when there were only 6 of us! Even though I hadn’t indulged too much, my BG soared to about 250 mg/dL around dinner time. There was a delicious red velvet cake to be eaten afterward and I was upset that I was going to have to pass at the moment because of my high BG. One of my friends asked how long I would have to wait for it to come down. I told him it depends but it could possibly take a while. This got me thinking of how intricate managing glucose levels really is. To an outsider, it may seem like if a person with diabetes’ blood sugar is high they would take insulin and it would come back to normal promptly. Not always the case.
Then this morning, Scott pointed out a great post from Alexis over at I Run on Insulin. She talks about the complexities of managing BG more from the liver’s perspective but it resonated with me because of what I was thinking about a few days ago. Insulin is not the only thing missing from a person with diabetes’ body. Back when I was diagnosed, this wasn’t really part of the education given. We were taught to give daily insulin injections and sent on our merry way. But there are other hormones and functions affected by that attack of one’s beta cells. Science is not my thing. I work in Finance for Pete’s sake! I’m not going to pretend to completely comprehend the biology of it all but I do understand that insulin is not the only thing that regulates glucose from the blood to the body’s cells. There is glucagon which is another hormone secreted by the pancreas that causes the liver to convert stored glycogen into glucose when the blood glucose level is too low. Glucagon and insulin work together to keep glucose levels stable. And there is amylin, a partner of insulin. It is secreted in response to meals in order to maintain glycemic control.
In a person with diabetes, all three of these hormones do not work properly, if at all. Add that to the variables of taking human made insulin, through human made devices based on non perfect, human made decisions, it’s a wonder how our blood glucose levels are ever near normal! It’s never not always as easy as insulin.
It was Christmas eve, 1981. God had other plans for a little 5 year old that year, other than spending time with family, opening gifts, waiting and wishing for Santa to come and leave gifts for the next morning. Instead that little girl was taken to the hospital where she was diagnosed with type 1 diabetes. That little girl was me. Thirty years ago today.
Now that I can say that I have lived with diabetes for a full 30 years, I can’t quite explain what an achievement that feels like. I’ve carried out my life the way I would have otherwise. Despite the fact that I’ve poked my fingers over 65,000 times. That I’ve had over 32,000 injections. That I’ve had countless low and high blood glucose readings. I am a reasonably healthy adult. For that I am extremely thankful.
So much has changed since those days of learning how to give injections to an orange. Having my parents give me my shots. Having to use urine strips to determine glucose levels. Fighting with insurance to cover a blood glucose monitor for us to use at home (a gigantic, slow, super expensive one at that!) Taking only one or two injections a day. Not counting carbs but eating a restricted diet. Testing just once or twice a day. For the past five years, I have been using an insulin pump. For the past three, I have been using a continuous glucose monitor. These two things alone are something that I never would have imagined using growing up. Having diabetes, I am so appreciative to be around in the days that these things are available. That things like the artificial pancreas are in the works. These things have helped me get to where I am today.
I wish, with all of my soul sometimes, that I didn’t have this disease. I would give anything to not have to test my BG before everything I do. Everything I eat. Every time I am active. Each time I go to sleep. And in between. Even more so, I would give anything not to have fear about losing my vision. About having nerve damage in my legs or hands. About my food not digesting properly. About the functions of my kidneys and heart. But God had other plans for me. Thirty years ago today I was diagnosed with this disease. And I will make the best of it. I will test my BG frequently each day. I will force myself to exercise even when I really don’t want to (still working on this one). I will go to a myriad of doctors to be proactive about the complications that have begun in my body. And most of all, I will fight diabetes with every ounce of my being. No matter what is in store for me after 30 years, I will not let diabetes destroy me.
With the start of Hanukkah last night and the craziness before Christmas in the next few days, I just wanted to take a moment to wish all of you a very happy holiday season. I wish for all of you memorable times spent with loved ones; happiness, health and prosperity going into the new year and most of all cooperating glucose levels to enjoy lots of holiday treats! 🙂
As a person living with diabetes, having a laundry list of doctors to see is quite common. And those doctors are, unfortunately, not always diabetes experts. One of the things I am asked on occasion was asked of me recently on a phone call with a nurse from my retina specialist’s office. And it drives me crazy.
“How are your blood sugars?”
Now, I’m sure there are instances where someone could say totally out of control or close to perfect (don’t I wish!) but I think for the majority of us, it depends on what hour of what day. I know they mean well and are trying to get at how “controlled” your diabetes is. But how exactly does one respond to this question? Do you respond with your latest a1c result? Latest finger stick result? Latest blood sugar average from your meter? Current CGM reading? I mean if you ask me that at the peak of my female cycle, my answer is going to be fantastic. If you ask me while I’m battling a cold, my answer is probably going to be terrible. If you ask me that while I’m under a lot of stress at work, my answer will be could be better. If you ask me while I’ve had the time and energy to beef up my exercise, my answer would likely be great. With how very tedious the daily task of managing one’s glucose levels is, and just how many factors contribute to those readings, there should not be such a blanket question as how are your blood sugars. There are just too many elements to answer that precisely. I need to think of a great answer to this question when asked. I’d love to hear suggestions!
I think one of the hardest things about living with diabetes is knowing the complications that can happen from high blood sugar over time. Knowing that you can start having problems with your eyes, limbs, kidneys, heart, digestion, etc. is scary as hell. We do everything we can to control our blood glucose levels in order to prevent these things from happening. But for someone like myself, having high blood sugars over the course of 29.99 years (8 days shy of my 30th diabetes anniversary), I’d say is time enough to possibly cause damage.
I have started to see some of this damage develop in my body. I have started treatment for retinopathy and mild gastroparesis. I also had a slightly abnormal autonomic nervous system test result recently. But today I received the greatest news. I had a NCV test done a few days ago to confirm what seemed to be some loss of feeling in my feet at an endo appointment. And after persistent calls to my endo’s office (thanks Dr. K for putting up with my anxiousness!), she called me back with the results. No signs whatsoever of nerve damage in my lower extremities. This is the best Christmas and d-versary present I could ever have asked for! I know this doesn’t mean I’m in the clear for good. But this is a huge blessing. One that I am extremely thankful for at this point in my life. This may have been the lift to my spirit that I’ve been needing. This is motivation for me to keep my BG in check. It also shows that complications are not inevitable. Even after 29.99 years.
I hope you all have a great weekend. I know mine is off to a great start 🙂
A lot of people have called me the Retweet (RT) queen or that I can RT like no one’s business on Twitter 🙂 This RT’ing of mine has proven to be meaningful as it has landed me a Health Activist Award nomination from Wego Health. I was overjoyed when I got the email saying the following!
Your nomination details:
Award: Best in Show (http://info.wegohealth.com/best-in-show-2011)
Link: https://twitter.com/#!/PortblPancGrl/
Platform: Twitter
Reason: Stacey is the best RTer out there. She is seemingly always online, RTing links to blog posts to help get the word out!!
First and foremost, I want to sincerely thank whoever it was that nominated me. I feel truly honored, even if I don’t turn out to be the winner.
Second, I thought this would be the perfect time to put out there the reason for all of my RT’ing nonsense. There are a lot of diabetes bloggers out there. A lot. And while we all may have similar experiences from time to time, use similar products or have similar goals, everyone deserves to be recognized for the effort put forth in their blogging. That’s one of the things I am striving for when I RT so many posts – to give credit to that blogger for their writing. Is it possible to read every single post, every single day? Abso-freaking-lutely not. But regardless if I read every single one of the posts I RT, I’m still recognizing that it’s out there. Especially with the hopes that someone who may have missed it otherwise, can go on and read it. Which brings me to the other reason I RT like mad.
One of the things that I think I’m good at is sharing information with others. One of my biggest pet peeves is lack of communication. By anyone. I hate that feeling of being left out or not being in the know. So when I find out about something that I think every person with diabetes should know, I want to share. Isn’t that one of the things that what we, as diabetes advocates, aim for? To communicate the issues that are important to us? Well that is what I hope for when I RT. So I hope none of my followers out there find my RT’ing a nuisance. I’m not just simply RT’ing for the sake of RT’ing. I’m on a mission 😉
There are many more categories to nominate for in the Wego Health Activist Awards. Why don’t you go and nominate someone?
I’ve read quite a few posts and had conversations regarding this diabetes ennui that seems to be going around recently. And while I wish I could say I haven’t jumped on that bandwagon, I’d be lying.
I’m still testing regularly and acting on those results. But it’s more like robot mode instead of being actually proactive or trying to find things that need to be changed. My motivation for anything, especially diabetes related things, is lacking. Big-time. There has been a lot more stress at work the past couple of weeks so I know that is a contributing factor. I hadn’t noticed before how much I dislike the increased darkness that comes with winter. I’ve never been a fan of the cold weather but waking up in the darkness and coming home from work in the darkness has hit a nerve this year. Or it could just be my frame of mind. I have not been exercising the way I should be. Although dealing with back pain, I’d still much rather think of an excuse and hang out on my comfy couch. And since my BG readings have been pretty decent without the exercise, I’m not finding the incentive to get to it. I can’t believe it but the holiday season is upon us. I’ve done most of my Christmas shopping and am trying to get in the holiday spirit. Still something is nagging at me, pulling me down a bit.
Then I realize that with the holidays, also comes an anniversary for me. I was diagnosed with diabetes on Christmas eve. And in just 16 days I will be commemorating 30 years since that diagnosis. 30 freaking years. And I think that is what is weighing on me. As much as things have been good for those 30 years in the past, I am afraid to move forward and past that mark. I am afraid of what another 2 or 5 or 10 years can bring.
I have to try my hardest to not let that fear overcome me. I have to embrace the knowledge and tools I have to let those fears be just that. Fears. And nothing more.
I can’t let diabetes get the best of me. For a few moments, maybe. I’m only human. We’re only human. But then I must get out of robot mode and find incentive to exercise. My health really depends on it.
I can’t forget what this time of year is really about. Celebrations. Giving. Loved ones. Sharing. There is a lot to be thankful for. Diabetes or not. I will not be a Grinch.
On this date 10 years ago, my life changed forever. But not in the way that something like diabetes can change it. It was good. The man I had been dating for 3 years, the man I had truly fallen in love with proposed to me.
I don’t recall exactly what day of the week it was but it was an ordinary work day. Or so I thought. Joe met me for lunch which wasn’t unusual at that time. He had brought me flowers which also wasn’t unusual. We ate at our favorite diner which was right across the street from my office. After lunch, he walked me back to my office building and I had picked up something at the newsstand to snack on later. When saying our goodbyes, he handed me a leather journal to read. Since my hands were full (flowers and snack), I told him I’d read it later. He kept insisting I read it then. I just thought he was being annoying; ha! I freed my hands by giving him something to hold and I opened the journal. Something caught my eye right away. It was written in but also in the middle of the pages, there was a hole that was burned though the pages of the book. And sitting in that hole was a ring. A diamond ring. I don’t recall my exact reaction when seeing this but I continued to read what he had written. And it was a poem where at the end, he asked me to be his wife! It was his grandmother’s ring that he gave me and November 29th is her birthday so this was carefully planned. All of this happened in the lobby of my building however I don’t even know if there were people watching or not. I was too captivated by the moment. Of course I said yes! I don’t think I cried, I think I was too mesmerized by what was going on. It was hard to say goodbye to him but I had to get back to work! I went up to my desk and announced to my boss and co-workers that I just got engaged. What a surreal feeling. My boss was super nice and let me go home so that I could celebrate with Joe and our families.
I was going to have a husband. I was going to be a wife. We were going to be married. One of the best days of my life. And 10 years later, this date still means the world to me. And so does he.
Since becoming active in the diabetes online community over the past couple of years, I have found a profound admiration for the parents of children with diabetes. I was once a child with diabetes however never got to see what my parents went through from their perspective. But now I can, through their voices. One of those parents is Scott Benner. He has been a stay-at-home father since his son, Cole, was born in early 2000. His daughter, Arden, was diagnosed with type I diabetes just after her second birthday, in the summer of 2006. Exactly one year later, he wrote his first blog post on his site, www.ardensday.com. Scott has something new up his sleeve and I wanted to share with all of you so please read on.
What do you get the best damn retweeter in the diabetes online community for the holidays? I’m seriously asking because all I got for Stacey was more words to show to other people. There are a few folks in the DOC that I could never thank enough for their support and the Girl with the Portable Pancreas is definitely one of them.
Let me get to the point before you start asking yourself why Stacey gave me this space today. Insulin pumps and continuous glucose monitors (CGMs) are expensive. Even the insured can lack the funds necessary to begin using these amazing devices because of large out of pocket costs. This single issue has long bothered me and I have written about it many times on my site, Arden’s Day. I’ve been trying for more then two years to find a way to put pumps and CGMs in the hands of children that want but can not afford them. I’ve spent countless hours trying to convince those who are in a position to help, that they should – but I’ve had very little success. I almost gave up when I realized that it wasn’t my goal that was faulty but my execution. I was asking the wrong people for help…
The diabetes online community is powerful, maybe more so then any one of it’s parts is aware. When we band together, we aren’t just powerful, we are unavoidable. I’ve seen it in the past, I’ve seen an entity bend to the will of the few. I can’t mention when or who because taking down my petition was part of the agreement that we made when said entity decided to listen. Please trust me, our voices have power.
A number of weeks ago I stopped hoping that I could get devices for children with type I diabetes for free and I turned my attention to finding the money to buy them for the kids myself. I struck an agreement with one device company to purchase their device at cost and with that agreement in place, I am moving forward to set up a charitable organization so that I can fundraise and begin the work.
Starting a charity is expensive, more expensive then my family could bear on it’s own. I had two choices, give up or do something bold. I chose bold. In just a few days amazing gifts have flooded my inbox to support the formation of this dream. They’ve come from all around the world, from North Carolina, Canada and even Finland. They have come in all sizes and types but each with the same sentiment. I am humbled and ready to pledge my time and my heart to making this dream a reality. If you’ve ever had the same thought, that diabetes devices should be available to every child that wants one, please take a few moments to find out more about my so far Untitled Giving Project.
My family is fortunate to have good insurance and the means to cover our out of pocket expenses. I want, almost as much as I want a cure for type I, to help the kids who aren’t – can you please consider helping me to help them?
My fondest regards, Scott @ArdensDay
Thank you Scott firstly, for what you are working on. And secondly, for taking the time to share your generous efforts here with my readers. I sincerely hope you will attain your goal and make the difference in the lives of children with diabetes!
Please visit http://www.ardensday.com/ardens-day-gives to make a donation.
The Girl with the Portable Pancreas 