Diabetes Self-Management Blog

“Oh, look at that. Looks like you’ve got diabetes. Have a pamphlet.”

That’s how this journey started for me. I was a regular 15-year-old kid at a routine checkup. My doctor, by all accounts a perfectly capable and skilled clinician, gave me the news with the tone of voice you might expect from someone finding a free toy at the bottom of a cereal box — “Oh look, a toy car!” I remember that moment like it was yesterday — I remember that feeling, a kind of dead-stop, time suspended, waiting for someone to come through the door, notice the mistake in the script, and replay the moment as it was supposed to be; without “diabetes” ruining everything.

I’m now 33. In the years since that day, I’ve lost a parent, married my wife, earned a few degrees, embarked on several careers, and seen my beloved Denver Broncos win two Super Bowls. I’ve had ups, I’ve had downs. And I’ve now lived with Type 1 diabetes for more years than I’ve lived without it. For 18 years I’ve lived with this disease — counting every carb, monitoring (almost) every morning, taking insulin before every meal. I calculated the number of injections I’ve given myself the other day: 20,000, conservatively speaking. I can’t look at a plate without running a calculation in the back of my mind. Diabetes has become a part of the fabric of my life. If you’re reading this, it’s probably become part of the fabric of your life, too.

In this blog, I hope to explore what it means to live a full human life with diabetes. There is a world of information out there. This site, in fact, has enough information on managing this disease to keep you reading for months. Science has given us tools to manage this disease in ways unimaginable 20 or 30 years ago. In other words, the “how-to” of managing diabetes is pretty well covered. What I hope to offer is a place to explore what it means on an emotional level, a philosophical level, and on a human level, to live with diabetes. This disease impacts how we think, who we become, the lessons we learn, and the values we embrace.

In my professional life, I am a child and adolescent therapist, music teacher, and performing musician (and now, apparently, a blogger). Diabetes has impacted how I approach all of these activities, setting some limitations but also building insights and skills I might never have acquired without diabetes. As a therapist, I strive to promote balance, patience, and resilience for my clients. Diabetes might have taught me a thing or two about these qualities. As a musician, I need to attune myself to my surroundings, listen deeply, care for my body, and think quickly and creatively. Diabetes has taught me a great deal about these qualities, as well.

Lest I become too serious, I also hope to share some of the humor of living day-to-day with diabetes. And there is plenty of humor in it. I’ve been on a number of tours as a musician; not the kind of tours you’re picturing, though. Most touring musicians sleep on floors or couches each night after shows, and drive from town to town in old secondhand church vans. It’s only a rarified few that get to lounge on tour buses and sleep in nice hotels.

So what does that mean as someone with diabetes? It means introducing myself to my fellow musicians, asking if they’re squeamish about needles, and taking insulin on a crowded bench seat in the drive-thru lane at Wendy’s (where I of course always order the salad with fat-free dressing on the sideā€¦). On one occasion, it meant politely informing the backstage crew that the punch laced with the hallucinogenic “special ingredient” should really not be given to the keyboard player with diabetes as it might, through a series of unfortunate events and incoherent decisions, lead to a diabetic coma and probable lawsuit down the line.

Lastly, I hope to fully utilize the interactive nature of this forum. Please comment, post questions, share experiences. This is a place to proudly, loudly, humorously proclaim yourself to your fellow Diabetians! So share with us what diabetes means for you. Share what you have learned from it; share your struggles with it; share your stories. And enjoy the ride.

POST A COMMENT       
  

Comments
  1. Welcome to Diabetes Self-Management, Scott. I look forward to reading more of your fascinating and inspiring story!

    Posted by David Spero RN |
  2. I can relate to the club scene from the owner/type 1 perspective. Sorry for the cheap hotels and really bad food. Looking forward to hearing your insight.

    Posted by Kathy Mueller |
  3. ‘Diabetians’ huh?! I still am not sure if I like ‘I’m a diabetic’ or ‘I have diabetes’! I’ll have to marinate on this one! I think I like it! Quirky and different, like most of us are!
    Thanks for your candor!
    (Btw, auto correct wants to change diabetians to diabetic lol “/.)

    Posted by TacsGirl |
  4. Any help suggestions for restless leg syndrome?

    Posted by Joy |
  5. Scott, unlike you I’ve had a lot of problems with diabetes, I’ll get into. Unlike your finding that you had diabetes. In 8th grade I went to see my doctor and he thought I was on some kind of drugs so he had my parents take me to hospital where as soon as I breathed on them they knew and next thing I knew they had two IV’s on me.This was in 1979 so you know then I had to check my sugars by urine which didn’t control it very well. Then about 4 and a half years later after going to hospital again found out had to take two shots. About in 1995 my sugars went all over the place and I was at hospital a lot. Then about in 1998 I was put on disability and was on for about one and a half and then I got a insulin pump then in about 2010 in my sugars started going all over the place. I then in 2011 was put on a list for an islet pancreau transplant then in 2012 got the transplant and now for the most part they are in check though I’m again on a list for another transplant to hopefully cure this disease.

    good luck with your too,

    Terry

    Posted by Terry |
  6. Diabetians? Maybe. I have to say I don’t have diabetes, but can’t bring myself to use the word diabetic anymore. Decades ago, I got onto the person with… train and that is what it has been for people with diabetes, people with CP, people with schizophrenia etc. Still, if you like your new term, why not?

    Posted by BK CDE |
  7. The “Diabetians” term was actually one I heard from a fellow musician. I was backstage, and saw his “kit” (bag with tester, insulin, etc.). He saw mine, and he spontaneously smiled and jokingly said to me, “a fellow Diabetian!” The moment stuck with me, and I loved the humor in the name. In general, however, I always say I HAVE diabetes, and avoid saying I am diabetic.

    Posted by Scott Coulter |
  8. Terry, thank you for sharing your story. I’m so sorry you’ve had to go through all of that, and I admire your willingness to share it with us. Coming from my background as a therapist, I plan to focus a lot on the emotional issues that come with diabetes. And I hope this blog can grow into a forum where people don’t just read what I have to say, but come together to support one another. We often can’t change the events we experience in our lives, but simply being available for one another and willing to listen goes a long way. Feel free to share anytime.

    Posted by Scott Coulter |
  9. I like to tell people I’m ‘insulin challenged’..
    You know a rose by any other name…

    Don’t like the word diabetic — people think you must have done something wrong??!!

    And I add, “oh yeah I sort of live my life a couple of hours at a time. “Oh you kinda get used to it.”

    Kind of! That’s when I walk away smiling a little and am very thankful I wasn’t born 40 years earlier, as I would never have got to be a senior citizen in good health.

    Posted by JohnC |
  10. Hi my name is Debra Johnson and I have had Diabetes for 41 years this past July. I am 46 years old and I am having a really hard time getting my blood sugars under control. No matter what the the Nurse practishiner tells me to do it does not work. I have been on the insulin pump before and every thing was great. But now I do not have no medical insurence and I am really stuck on not being able to get my medication and I need help with that to. I would love it if you could HELP ME PLEASE. My Mom and Dad keep on blaming themselfs and they always think that they have done something wrong and I keep on telling them that they did not do anything wrong and then I told the both of then that it is heredatory. My Mom has Diabetes,My Uncle had it but now he has past away,My Gread Uncle had it to and he has past away to. I have some of the problems that Diabetes give you. I have had a heart atack,some eye problems,Glutin problem,Depression,Thyroid gland disorder,Addison Diseas,Adremal Gland Disorder,High Blood pressure,High Cholesterol. I live my day every 5 minute at a time because I never know what is going to happen with me for one minute to the next and I can never make no planes with no one because any thing can go wrong and I never know when something is going to happen. I do not live that kind of life because it really stinks. I never feel my blood sugars drop no more them my Doctor put in a perscription in for a 24 hour blood sugar machine and then I got it and then started to use it and it help my 100% With my Lows and my Highs. Please help Me if you can i really need it. PLEASE! As bad as my Diabetes is it feels just like having cancer because you never know when you are going to die. I really wish that the Medical sientis would come up with a cure for Diabetes Because I would try to be the first on in line for the cure. Diabetes is not a fun to have a medical problem that can take your life.

    Posted by Debra Johnson |
  11. Debra,

    I wish I could offer you something that could bring your sugars under control, but unfortunately medical advice isn’t something I should give out (or am even allowed to, since I’m not a medical doctor).

    I have always been a big advocate of universal health care for this very reason. Access to medical care should not be denied because of pre-existing conditions, money, or anything else. One piece of practical advice might be to look into your state’s “high risk” health insurance. In 2014, insurance companies will lose the right to deny anyone coverage or charge higher premiums because of a pre-existing condition. Until then, most states have adopted a “high risk” insurance program, which offers people subsidized coverage. The only catch is you have to have been uninsured for at least 6 months. If you’ve gone that long without insurance, look into that option. There is still a monthly premium, but it is not allowed to be higher than the average price.

    Beyond that, all I can offer is emotional support. It sounds like you’ve been put through a lot over these 41 years — not only having to deal with the complications of this disease, but also having to deal with all of the injustices of our current health-care system. A lot of studies have shown that people are pretty good at handling one challenge, but when that one challenge is compounded by a second, a third, a fourth challenge, it can be the breaking point. Diabetes is a challenge. Having to fight the health-care system is another. Having to worry about family is yet another.

    In my experience, there are a few useful things to do when facing so many challenges. The first is to do exactly what you mentioned: live life in the moment. I know it’s kind of cliche to say it, but the fact is no one is guaranteed to be here tomorrow. This moment is all any of us ever have. I have always tried to maintain a regular meditation practice to help me keep my attention in the moment and avoid getting lost in regret about the past or fear about the future. Meditation is a very good practice for simply calming the mind and cultivating a sense of peace in the moment. It doesn’t cure all of our problems, but it can help us face them and not feel like they are bigger than we are. If you want to try this, here’s a very quick, simple set of instructions to get started:

    1. Find a place to sit that is comfortable. It can be sitting cross-legged on a pillow, or sitting in a normal chair. If you’re in a chair, put your feet shoulder-width apart and imagine your feet are firmly planted in the ground — almost like a tree with roots running deep into the ground.

    2. Place your hands on your knees, palms down. There are other ways to hold the hands, but this is the simplest.

    3. Either close your eyes, or keep them open looking slightly down.

    4. Have your back straight, but not tense. You can imagine your back is being held up by a string being pulled from above your head.

    5. Now, start focusing your attention on your breath. It should be full breaths from your stomach, on the slower side but not exaggerated — don’t do the long, deep breaths you would when a doctor is listening with a stethascope, just relaxed, calm, full breaths.

    6. You will notice a flurry of thoughts coming through your head — worry about the family, fear about the future, anger at the insurance companies. You’ll also notice some boring thoughts — things you need at the grocery store, to-do lists, lines from your favorite movie. With ALL of these thoughts, the goal is to simply let them float away. You don’t have to try to make them go away, but don’t pay a lot of attention to them, either. Keep your focus on your breath and being in the present moment, and just let each thought float off like a bubble without chasing it or putting your focus on it.

    If you can do this for even 10 minutes each day, you may find that the challenges begin to feel a little less overwhelming. They will still be there, but you may find that you begin to feel like you’re bigger than they are, instead of the other way around.

    Finally, the last thing you can try is volunteering in some way. Finding a way to be of service to others is one of the best ways I know to overcome depression. The next time you see your NP or doctor, ask them if there are any organizations devoted to helping people with diabetes, and ask if those organizations need volunteers. Doing this can help you feel less like a victim of diabetes. You’ve been given this tremendous challenge. That means you have some tremendous wisdom and probably a lot of energy to devote to helping others face their challenges, and to standing up to this disease.

    I hope some of this can be helpful for you. I’m sorry I don’t have any specific suggestions for blood sugar, but that’s something that should be addressed by a doctor who can see you in person. Good luck in the future and thank you for sharing your story here.

    Posted by Scott Coulter |

Post a Comment

Note: All comments are moderated and there may be a delay in the publication of your comment. Please be on-topic and appropriate. Do not disclose personal information. Be respectful of other posters. Only post information that is correct and true to your knowledge. When referencing information that is not based on personal experience, please provide links to your sources. All commenters are considered to be nonmedical professionals unless explicitly stated otherwise. Promotion of your own or someone else's business or competing site is not allowed: Sharing links to sites that are relevant to the topic at hand is permitted, but advertising is not. Once submitted, comments cannot be modified or deleted by their authors. Comments that don't follow the guidelines above may be deleted without warning. Such actions are at the sole discretion of DiabetesSelfManagement.com. Comments are moderated Monday through Friday by the editors of DiabetesSelfManagement.com. The moderators are employees of Madavor Media, LLC., and do not report any conflicts of interest. A privacy policy setting forth our policies regarding the collection, use, and disclosure of certain information relating to you and your use of this Web site can be found here. For more information, please read our Terms and Conditions.


Type 1 Diabetes
BMX Camp for Kids With Type 1 Diabetes (07/31/14)
Type 1 Youth Canoe Trips (07/14/14)
Diabetes Law Student Scholarship Seeks Applicants (07/14/14)
Bionic Pancreas Trials Currently Recruiting (07/03/14)

Living With Diabetes
The Outside Like the Inside (08/27/14)
Upcoming "Taking Charge of Your Diabetes" Health Fairs (08/19/14)
Patterned Behaviors (08/14/14)
Toughen Up, Kids (08/07/14)

Diagnosis
New to Diabetes: What's Next? (Part 4) (01/28/13)
New to Diabetes: What's Next? (Part 3) (01/28/13)
New to Diabetes: What's Next? (Part 2) (01/14/13)
New to Diabetes: What's Next? (Part 1) (01/07/13)

Scott Coulter
The Outside Like the Inside (08/27/14)
Righteous Anger! (08/21/14)
Patterned Behaviors (08/14/14)
Toughen Up, Kids (08/07/14)

 

 

Disclaimer of Medical Advice: You understand that the blog posts and comments to such blog posts (whether posted by us, our agents or bloggers, or by users) do not constitute medical advice or recommendation of any kind, and you should not rely on any information contained in such posts or comments to replace consultations with your qualified health care professionals to meet your individual needs. The opinions and other information contained in the blog posts and comments do not reflect the opinions or positions of the Site Proprietor.