Recently, I have been thinking a lot about tolerance, and as a diabetic I think it is fair to say that intolerance has hurt all of us at some point. There are many times that we have no other option than to draw blood while testing our blood sugar or lift up our shirt a little for a shot while in public. Although we don’t mean to disturb anybody, there are still the people who will give looks and make faces. However, I am not about to write a blog about how people should be more respectful to diabetics, but rather, about how we should be the ones setting an example and learning to ‘live and let live.'
For this, I look to Gandhi for inspiration as he said, “be the change you want to see in the world.” We can all agree that the looks are painful, especially when you are on the receiving end, yet we have all, at some point, judged someone before we knew her or her whole story. There are so many examples of where not knowing the whole story can lead us to make judgments we shouldn’t. If someone is being rude, maybe they are dealing with something very painful. If someone is making noises that may be annoying to someone, maybe they have a medical condition and they can’t help it.
It would be nice if we never had to be self-conscious about our diabetes while in public, but as of now, that is not the case. To ‘live and let live’ means that we don’t question other peoples actions or behaviors, and hopefully in return, they do not question our own. But this change won’t happen overnight, nor will it happen by just stepping back and hoping the change comes. We must be the leaders of this change. From all of our past experiences I think we are very qualified to embrace this. So the next time the guy next to you is playing his music so loud that you can hear it, rather than disturbing his peace and demanding he turn down the volume, simply move, or better yet, don’t think anything of it. Live and let live.
When people realize I have diabetes they have a lot of questions. I generally say the same thing every time: something along the lines of having to check my blood sugar before every meal, having to bolus for every carbohydrate I consume, and having to constantly worry about what my blood sugar is doing. After I give my little speech they often say, “Wow, I’m glad you’re that strong, I could never do that.” I generally smile and nod modestly, as if it’s no big deal. Although, a lot of times I feel bad because I paint this very broad and oversimplified version of what diabetes is. They have no idea how hard life as a person with type one diabetes can be.
People with diabetes should give themselves more credit for the lives they are forced to live. Think about all the things we do on a daily basis. We have to be mathematicians, dieticians, and doctors without ever taking a class on any of those subjects. Even more, we have to be all of these things while still being friends, brothers, sisters, mothers, fathers, students, and workers. Often times we play down how hard living with diabetes is and yet it is the biggest struggle in most of our lives.
We all come from different backgrounds, but living with diabetes has turned us into a force that cannot be moved. Whether we were strong from the beginning or we became strong out of necessity, we are all amazing human beings that are able to cope with things most people never could.
I credit my greatest accomplishments to the strength I have gained from diabetes. I will never say that I enjoy having diabetes, or anything even remotely close to that, but I will say that without diabetes I would be a much different person. Living with this disease has taught me to look on the bright side of things because it keeps me from focusing on the negatives and missing the true beauty in life.
Albert Einstein puts it simply, “Most people see what is and never what can be.” It’s easy to see diabetes as an incurable disease that will plague our lives forever, but we cannot live our lives with such a pessimistic outlook. We will end up sad, depressed, and bitter. Rather, if we harness the strength gained through diabetes and use it for good then we will become a force to be reckoned with. A force that knows how a good attitude and a positive outlook can change the world.
About a month and a half ago I switched insulin pumps to one that includes a continuous glucose monitor. It has not been a smooth transition; however, I am still hopeful that this will be a great tool for me in me managing my diabetes. The technology works by inserting 1.5 cm ‘wire’ into my abdomen. The ‘wire’, through a process of chemical reactions, is able to find my blood sugar which then gets sent to my pump. On my pump I can then see a live graph of how my blood sugar is trending. This gives me an amazing set of charts and graphs which help me to make changes to my insulin dosages. The sensor can also give me alerts when I am trending high or low which helps me treat my blood sugar before it becomes an issue. Although this means a lot of alarms and notifications, the payback is invaluable.
It is extremely important to keep tight glucose control. Wild swings from high to low and vice versa can cause serious injury to the body. A cure may still be a ways off and so in the mean time we must do what we can, with what we have, to take the best care possible of our bodies.
Albert Einstein once said, “Most people see what is and never what can be.” It’s easy to get caught up in the day to day routine of checking your blood sugar, giving insulin, and being stressed about the constant attention it takes to manage this disease. This routine makes you feel like there is no end in sight, but that’s just because you don’t see what can be. Already, with technology like the continuous glucose monitor is making diabetes management a little easier. My hope is that science will continue to find better ways to treat T1D and someday there will be a cure for this disease.
Hello! Today I want to discuss insulin shots and insulin pumps. There are many reasons why you might choose one over the other but they both are very good options in managing your type one diabetes.
After my diagnosis I used insulin shots to manage my T1D. While on shots I had to give myself one shot in the morning with slow acting insulin that would act as my basal for each day. In addition, I would give myself a shot of fast acting insulin anytime that I ate anything which meant on average I was giving myself about 4-6 shots a day. I carried a bag with me everywhere I would go that contained my insulin vial, syringes, alcohol swabs, and my glucometer. If I was in a public place I would try to find a more secluded spot to administer my shots simply for privacy. It was essential that I was able to make the calculations necessary to account for my blood sugar and the carbs I consumed to give the right amount of insulin. Shots were great in the fact that I didn’t have something attached to my body; however, I made the decision to switch to an insulin pump after two years.
The switch to an insulin pump was hard yet I am very glad that I did. An insulin pump is a very expensive piece of equipment which added an extra stress of having to worry about breaking it. The pump gives you your basal constantly throughout the day instead of one shot in the morning. On the pump I also have a lot more freedom. For example, every time that I eat it is very easy to push some buttons and have the insulin pumped into me. I also find it easier to have better control due to the fact it is very easy to do a correction bolus to get my blood glucose down when needed. However, there are some drawbacks as well. It can be difficult wearing the pump and having it attached to myself 24/7. It also requires me to change my site about every 2 to 3 days.
Promising new technology is starting to come to the market that will help people with T1D have even better control. The first generation of the artificial pancreas has just been approved by the FDA. This pump has been on the market in Europe since 2009 so it is great that people with T1D will now get a chance to benefit from this new technology. This new pump will work the same as the older pumps but since it is integrated with a constant glucose monitor it has the added safety benefit of suspending insulin delivery if blood glucose drops too low. I am looking forward to using this new pump and should be receiving mine soon. In my next blog, I hope to share some information on how the new pump is working for me. Stay tuned!
This month, our blogger, Adam, had the opportunity to speak with the media about his experiences in Washington D.C. this past summer during Children's Congress. Please take a look at his interview and comment below on what you think!
Hello! This summer I had the opportunity to travel to Washington DC with the JDRF Children’s Congress. I was able to meet with the two senators and representatives from my state. I shared my story of living with T1D and reminded them of the importance of continued funding for research for a cure. More specifically, I was asking them to sign a letter stating that they would support the Special Diabetes Program (SDP). The SDP provides funding for T1D research and is up for renewal next year through Congress. I wasn’t sure if I was going to be able to get them to sign the letter since neither senator nor the representative at the time for my district signed the letter two years ago.
I am happy to report today that all three members of congress signed the letter this year! This is very exciting for me and reminds me of the power of advocacy. It is so important that our members of congress are reminded of the great need for continued research. It gives me hope that one day there will be a cure for T1D!
Hello! Since I will now be blogging exclusively for Penpals United, I decided to start a short series going through some of the milestones of my journey with type one diabetes. This post will be about my diagnosis. Future posts will be about living with T1D and independence with T1D.
I was diagnosed with T1D when I was only six years old. I had been wetting my bed almost every night for a week and was so thirsty. My mom took me to the doctor thinking that I had a bladder infection. Looking back on it, I wish it was just a bladder infection, but it was T1D. The doctor told us to pack a bag for a three to four day stay in the hospital and head to the E.R. immediately.
Like I said, I was only six years old and much of what was happening went over my head. However, I do know that during our stay my mother and father received "information overload" about T1D and how to keep me alive. I remember that many people came to visit me and brought me stuffed animals, toys to play with and other gifts. After our four day stay in the hospital, it was time to come home.
My mom described that day as the most terrifying thing she has ever done. All of the sudden everything was different. No longer could we go about our lives as if everything was fine. Somehow my parents had to keep me alive and healthy trying to control a disease that they knew almost nothing about. Let me tell you something, it wasn't easy. My mother and father got very little sleep as they stayed awake almost all night, every night checking my blood sugar. Since my diagnosis was in April, I still had school to finish before summer. Going to school after my diagnosis was a hard transition. Now I had to walk all the way across the school to check my blood sugar at the nurse before lunch, before gym, before recess and when I didn’t feel right. What made this transition harder was that the kids at school would think that my disease was contagious or that they could get it from hanging out with me. Rather than letting that get me down I instead took it upon myself to educate them about T1D. Once they knew what the disease was, they had no problem treating me like every other kid in the school.
All the while I had the support of my family and friends. You can’t do it alone, you have to have people there to help prop you up when all you want to do is give up. This is just the story of my diagnosis which may be entirely different than yours. However, my hope is that you can look at my diagnosis and hear my story which might help you in your diagnosis and transition stages.
It has been over a week since I have returned from Washington D.C. and the JDRF’s Children’s Congress. What a privilege and honor it was to be one of the Missouri delegates. It was an experience that has had a profound impact on me.
Monday was an opportunity to meet all of the delegates from around the country as well as our international delegates. We rehearsed and then performed a song titled ‘Promise to Remember Me’. We were trying to put a face on this burden we all share: T1D. Our mission for the week was to ask congress to support and renew the Special Diabetes Program which provides funding for diabetes research. We truly hope our Senators and Representatives will remember us when it comes time to renew this funding.
Tuesday was an inspirational day when we got a chance to participate in a town hall with several celebrities that have T1D. We got to hear from Indy car driver Charlie Kimball, NBC journalist Leslie Adkins, actress Mary Mouser and Chef Sam Talbot. They shared their stories with us and answered our many questions. It was awesome to hear about Charlie Kimball’s ability to become the first Indy car driver with T1D. It was important for us all to hear that T1D might make things more complicated but we can achieve anything we set our minds to.
Wednesday was the big day. All 161 delegates went to Capitol Hill to meet with our Senators and Representatives. What a thrilling experience this was! I am so thankful that I live in a country where someone like me, a teenager, can meet with our nation’s leaders. Our first meeting was with Senator Blunt’s staff, followed by Senator McKaskill’s staff and then Representative Wagner’s staff. While I didn’t get to speak with the Senators and Representative Wagner for a long time or one on one, they were all gracious enough to meet me. It would have been great to have had more time with them to share my scrapbook and tell my story; however, I was able to relay the information to their staffs. I hope they will all sign the letter stating their support for the SDP. The highlight of the day was the senate hearing led by Senator Nelson and Senator Collins. Actress Jean Smart, NBA star Ray Allen, JDRF CEO Jeffery Brewer, NIDDK Director Griffin Rodgers, M.D. and Quinn Ferguson a delegate from Maine testified before the Special Committee on Aging about the importance of the SDP. Amazingly the Vice President, Joe Biden, stopped by for a photo and spoke with our group! I was so honored to shake his hand!
I take pride in knowing that by participating in the Children’s Congress I may have played a small part in helping find a cure and better treatments for T1D. It is easy to let T1D control you and prevent you from living a ‘normal’ life, but overcoming the disease and advocating for a cure is so much more empowering. I am looking forward to more advocacy work by participating in the Promise campaign in August. I can’t thank JDRF enough for organizing the Children’s Congress and for their ongoing quest to find a cure for T1D!
The JDRF Children’s Congress is one week away. On July 8th I will be in Washington D.C. with 150 other kids who like me have T1D (Type 1 diabetes). I can’t wait to have the opportunity to speak with members of Congress and remind them how important it is to continue funding for T1D research. It is so important that Congress renew the Special Diabetes Program (SDP) this year. Technically the program doesn’t expire until 2014 but it is vital that scientist doing research right now know that funding will continue to be there. With uncertainty over funding, potential research advances or clinical trials might be put on hold, which would be devastating.
JDRF is a driving force behind advocating for SDP’s renewal as well as funding for T1D research. Because of JDRF and the SDP, millions like me currently living with T1D are living healthier lives than in the past. When my grandfather was diagnosed with T1D at the age of 17, there was very little known about how to manage the disease in order to prevent major complications. Insulin pumps had not been invented yet and the idea of a cure was unthinkable. It was so hard and scary for me to see my grandfather suffer from complications of T1D: nerve damage, loss of vision, heart problems, having his leg amputated and ultimately kidney failure. I am not fortunate to have diabetes; however, I am fortunate to be living in a time of great discovery. Because of all the research that has been done I have the tools to live a healthier life until a cure is found. From research, I know the need to balance carbohydrates and insulin, I know tighter glucose control means a decreased chance of complications, and I have an insulin pump that allows me to have tight glucose control. The SDP continues to provide funding for so much promising research. Scientists are now understanding so much more about the immune system and how it plays a role in T1D. This will not only benefit people with T1D but anyone suffering from an autoimmune disease.
Our job as delegates of the JDRF Children’s Congress is so important. We have to share our stories and our hope with Congress so they can see how we have benefited from research and how research will continue to improve our health. Research will find a cure. How awesome it will be to say someday, “I used to have diabetes!”
Hello! My name is Adam and I will be a junior in high school this fall. I am vice president of our student body, active in many groups at school, play tennis, swim, volunteer at my church and I am passionate about protecting our environment. I also have type one diabetes.