Meet the man behind this wonderful new interactive "A Type 1 Diabetes Guide To the Universe". Joe Solowiejczyk has grown up with Type 1 Diabetes and has been a source to many families struggling with living with diabetes, Joe's fun loving engaging personality has been a hit with children and adults striving to get through life with diabetes. It is with great pleasure that we introduce you to Joe and his new guide "A Type 1 Diabetes Guide To The Universe".
Here's Joe's Story
I was diagnosed at the age of 7 and I’m 62 now, so that means I’ve had diabetes for about 55 years.
Of course the usual symptoms – frequent urination, extreme thirst and weight loss. My mother and father, realizing something was really wrong, contacted my doctor who had my mother collect my urine for 24 hours and had me go to the lab for a blood sugar test. Both the 24-urine sample, which was full of sugar, and the blood test confirmed my diagnosis – T1 diabetes.
I was rushed to the local hospital, which was a Catholic one, and which for this Little Jewish Prince, was a bit scary, especially regarding the crucifixes hanging over each bed! I had no idea what they were – maybe the last child who was in that bed or something! I mean, really – I was brought up in a very Jewish home and went to yeshiva. This was really my first contact with the larger non-Jewish world, outside of the friends who I played with on my block at home!
And as far as feelings were concerned, I was afraid, felt lost and confused and sort of angry when I realized that this would be a full-time job! I was scared of the long needles. It took me years to come to terms with dealing with all the feelings that came up realistically and honestly.
Meanwhile, while stabilized in the hospital, my parents found out about the Joslin Clinic in Boston. They had heard that it was THE place for patients and their families to learn how to live with diabetes so that you could have a real life, full of fun and adventure. They were told about the teaching classes and the doctors and the research they were doing there and they took me there straight from St. Joseph’s Hospital. And that was that – the beginning of my family and me understanding that you could have tight control and a life at the same time! As a matter of fact, the only way you could really think about having a life was to be committed to having tight control!
And I went to the camp that they had where I learned that you can take your diabetes with you anywhere and take care of it as well. The Diabetes Teaching Nurses at the Clinic saved my life and were invaluable sources of knowledge and expertise for my parents. Especially my mom, who took most of the responsibility for caring for me. It’s the teaching nurses that informed my decision to become a diabetes educator myself!
Elliott Joslin was years ahead of his time and the DCCT in understanding that if people who didn’t have diabetes didn’t spill sugar in their urine, then people with diabetes should strive as much as possible to reach that state as often as possible – without going too low too much of the time.
You have to realize that there were no blood sugar meters in those days when I got diagnosed! If you went to the Joslin Clinic you used Benedict’s Solution. You had to pee into a cup, put 4 drops of urine into the test tube and boil for 5 minutes! And the needles were stainless steel hypodermics, about ¾ of an inch long! It wasn’t easy but if you wanted to do it you could get really good control, even though the tools weren’t that accurate.
And I would say that’s always been true. It’s not the tools that do it for you – of course, easier and more accurate is better. But what I’ve learned with diabetes is that the most important variable and thing related to getting optimal control – no matter when you were diagnosed – is the “doing” it! Diabetes is like that – you don’t get any points for wanting to do it! It’s ALL about actually DOING IT!
- As a teenager growing up with diabetes were your blood sugars in control?
As a tenneager my mother was mostly in charge of my diabetes. I wasn’t perfect for sure but I wasn’t “delinquent” either! No A1c’s at the time, just urine sugars, which were a mjor pain in the butt to do – as you can imagine!. I woiuld say that I was in range about 70% of the time. I was great at carb counting and knew how to manage exercise and sports – there wasn’t anything that I didn’t do. I traveled on my own to Europe several times visiting friends and relatives. I would say the usual teenage stuff, with a little bend towards more responsible Joe.
- As a child growing up with diabetes what were some of the hardest times you experienced?
As a kid one of the hardest things was not being able to have regular soda – when I was diagnosed there weren’t really any diet sodas around! That was one really hard thing for me, as silly as it sounds.
The other was dealing with the feelings of sadness, fear, anger and resentment. My parents were excellent at helping my learn how to manage doing the physical things BUT the emotional area was really hard fro me. My entire year in 4th grade was spent misbehaving and acting out in response to everything I was feeling and going through with the diagnosis. It was hard. After 4th grade I seemed to settle down and move on. But the lack of dealing with all the feelings at that time took a toll that I was to pay for down the road – about 18 years after being diagnosed I had an emotional breakdown. The only thing that got me through it was my starting to acknowledge and work on the emotional aspects of living with my diabetes.
- Joe, what are you currently working on:
Well, promoting my new and the only one of its kind, diabetes iBook Management Manual, A Type 1 Diabetes Guide to the Universe, available on iTunes. It has 50 hours of embedded videos of kids, parents and adults from all around the world sharing their diabetes experience, strength and hope. Sort of like a book out of Harry Potter’s world!
Also doing patient & family presentations nationally and internationally, as well as conducting training workshops for healthcare professionals working in the diabetes space on how to integrate family therapy techniques into their clinical practices.
For those interested in getting family coaching on any issue related to diabetes, management and the family I do Skype sessions with families from all around the world.
I’m embarking on a new project as well - working together with Kevin McMahon. We’re creating a comprehensive video library service on T1 & T2 diabetes for patients and healthcare professionals to be able to access. More on that on Face Book soon!
Heres where you can find : Joe SolowIejczyk, RN MSW CDE f: amileinmyshoes1 ig: amileinmyshoes1 www.amileinmyshoes.com A Type 1 Diabetes Guide to the Universe Now available for purchase worldwide on the iTunes Store! bit.ly/type1guide