Diabetes Type 1 – Interview with Scott Strange
Today I am interviewing Scott Strange, the person behind www.strangelydiabetic.com. Scott has been very gracious in granting me this interview in an effort to provide support to all of you who have diabetes type 1. I am sure you can benefit from reading Scott’s experiences and tribulations as a type 1 diabetic.
E. How old were you when you were diagnosed with Diabetes type 1?
S. I was 7 and it was 1970
E. Did you have any symptoms before the diagnosis that indicated something in your body didn’t feel quite right?
S. The usual; weight loss and excessive thirst and urination. My mother actually diagnosed me because my breath smelled like rotten fruit. Her mother had been diabetic and that was one of the symptoms when she needed to go to the hospital for treatment of DKA (Diabetic Ketoacidosis).
E. Being so young at the time of the diagnosis, did you have any emotions at all when you heard the news?
S. I’m sure I went through the 5 stages of grief just like my parents did or anyone else who gets a diagnosis of something like that, but honestly, it was 40 years ago. I have trouble remembering things that happened last week…
E. How did the diagnosis change your life?
S. Well, one of the memories that I came away with was that I had a disease, I would always have it and it would probably kill me by the time I was in college. Imagine a 7-year old “learning” that. I honestly don’t remember anyone actually saying that, it’s just more of a general “impression”. Of course kids sometimes are invisible and pick up things that the adults around don’t think they understand. Not to mention all the horror stories people had to share about their 2nd cousin, who died from the “sugar diabetes” in 1947. I really ended up with a “why bother” attitude. I’ve had depression for as long as I can remember and that affects all attitudes you have about everything in your life. The main issue was that I really had no real support network.
My family supported me the best they could, but my folks grew up during the Great Depression and sometimes life was hard and you had to do the best you could with what you got dealt. I basically managed my own condition from the time I was about 10 years old. I felt alone because no matter how much someone wants to understand what it’s like, it’s not possible for them to understand unless they have Type 1, no more than I can truly understand what someone with Rheumatoid Arthritis (RA), Lupus, or cancer goes through.
Diabetes is an all-day/every-day condition. It affects almost everything I do. Somewhere, in the back of my head I am thinking about my current situation: how do I “feel”, what if “this” goes wrong. It just happens any more, without me even being conscious of the fact that I am doing it. I also have blue eyes and brown, well mostly brown, hair, that is how intrinsic diabetes becomes in your life. The longer I have diabetes, the less trouble I have managing the physical aspects than I do the mental ones. It is a long-term stress-producing situation that will never end. Combine stress, guilt, depression and it is very easy to get trapped in negative thinking. I am supposed to feel bad, so when I felt good, I felt guilty because I wasn’t “supposed” to feel good. And then on top of that, we have the stresses of everyone’s life with work, family, bills, insurance, etc.
E. Have you come to terms with the disease by now?
S. Well, honestly Social Media helped me quite a lot. I went online originally looking for information on pumping, found plenty, but found something even more important, but I didn’t realize it at the time. I found I wasn’t alone and there was support from my peers. I didn’t even know that I needed the support of people with Type 1, who really “got” what I dealt with on a daily basis. It took me 40 years to figure out I was not alone and that has made dealing with this so much more bearable. I ended up spending a lot of time on Tudiabetes.org, where I am fortunate enough to be able to volunteer as an administrator. There are so many sites like dlife.com, diabeticconnect.com that I just can’t keep up with everything. And all the individuals’ blogging now, connecting with others like this was simply not possible even 5 years ago. Diabetes is one of the most challenging diseases to manage because it never ends.
It is a true revolution in health care. We, as patients, can learn an incredible amount of information about any condition, usually using terms that don’t require a medical degree to understand. This allows us to be truly in charge of managing our condition; we know more, can ask better questions and get better results. It’s not an easy transition for both Health Care Professionals (HCPs) or patients to make, we are so used to deferring totally to our doctors, simply because we didn’t have the knowledge to ask questions and getting the knowledge was damn near impossible.
I’m fortunate enough to have found doctors who are willing to actually work with me, recognizing that I am the team leader and they are trusted advisers who give me my best options. I’ve had this approach for nearly 20 years, since my son experienced some health problems as a child. In the past, I’ve told doctors they are fired, and I am not afraid to do it again. It boils down to us realizing that WE are responsible for our health.
E. What is your daily routine when it comes to diabetes?
S. Consistency is important, as is knowing how your body responds to various types of food. I usually try and stay around 120 carbs a day, with dinner being my biggest meal. If I eat more than about 30 carbs at a meal, I will usually add Symlin as I am a “double” diabetic with insulin resistance also. Symlin has helped me lose weight and thus reduced my insulin resistance by quite a bit. It’s been challenging keeping up with it at times, it seems that every 5 pounds or so, I have to change not only my basal rates but carb ratios and insulin sensitivity as well. This has put me in an almost constant state of basal rate testing and having a CGMS (Continuous Glucose Monitoring System) has been invaluable in this.
E. Do you follow a specific diet to control your blood sugar?
S. Not really, I try to stay consistent. I tend to eat more protein than I used to. I eat “lower” carb, but definitely not low carb
E. What advice would you give people who are just diagnosed with diabetes type 1?
S. Know that you are not alone. The DOC (Diabetes Online Community) can provide a ton of support and information, whether you just have a question or are just frustrated because it’s one of those ”What The H…” days, folks are more than willing to help you the best they can. Get involved if you feel comfortable doing so, it can be very rewarding to get a message from someone that just says “thanks for caring”. It’s ok to be frustrated at times, it’s ok to want to rant and rave about it, and it’s ok to complain about insurance.
As you get online, you have to think about privacy. How much do you want people to be able to find about you through a Google search? And you know about playground bullies? How every playground has one? Well the internet is the Biggest, Playground, Ever.
As a Type 1, or a parent/caregiver, you have to be very aware of people who can “cure” you through this or that. You are desperate for a cure, and we all are. But the reality is that there isn’t one yet. I’ve been hearing the cure “is just around the corner” for 40 years, so those claims just get dismissed out of hand. I’ll believe it when I take all my remaining diabetes supplies and reduce them to a soldering pile of molten plastic and glass in a fire that would make the attendees at The Burning Man Festival envious.
But in all that, remember you are not alone. It is becoming more and more common for Type 1’s to live for decades, having careers, children and lives that involve more than just diabetes. A diabetes diagnosis is not a death sentence. You will have a life just like everyone else; it is just that our particular flavor of “normal” includes diabetes.
E. Thank you very much for this interview, Scott. I am sure it will help people who already have the disease and especially those who were just diagnosed and have not had the time to reconcile themselves with the new situation in their lives.
To know more about Scott Strange, visit him at www.strangelydiabetic.com
Emilia Klapp, R.D., B.S.
Your Diabetes Coach