- Phyllis Kaplan
Confusing Messaging Around Living with T1D
Over lunch a few days ago, a good friend and I were talking about the difficulties of fundraising. She asked me how bad it really is living with type 1 diabetes. She wasn't being mean, or a jerk, she was truly curious, and explained that if she were base how hard it is to live with type 1 diabetes (T1D) from my social media posts, it doesn't seem that bad. Her question gave me pause. Having lived with this disease for over 40 years and having experienced so much and so many changes I couldn't answer the question right away. In fact, I'm still pondering.
I think the answer is, it can be *very* bad and there's a scary fine line between life and death. Yet, I also want to show that it doesn't stop me from accomplishing my goals Confusing, isn't it?
Part of the issue as I see it is that it's hard to show what all goes into living with T1D on a day to day basis. Plus, from what I understand diabetes is one of the only disease (all forms of diabetes) where the patient or caregiver are the people managing it, with the health care team as advisors.
So how do we spread more awareness? How do we get people to get a sense of what it's really like to live with T1D? Is it by sharing a-day-in-the-life type information that outlines each decision? I'm not quite sure what's right, though it's most likely a combination of things that I haven't yet figured out.
A good place to start is to know that everything i do from the ordinary things like eating, sleeping, going to work, exercising to the extraordinary (for me) things like foreign travel, Zumba, weight lifting, takes a lot of planning. and sometimes a lot of worry. Planning includes inventory management of diabetes supplies and medications; calculations and timing of food and dosing insulin, and so much more. Not to sound over dramatic but the crux of it is, that too much or too little of insulin can result in some pretty devastating results.
To note -- I try very hard not to dwell on the what-ifs. I used to. But then I starting dealing with complications related to diabetes and I stopped living in the past, stopped living in fear, and started to live for today and tomorrow.
The short answer to the original question is living with diabetes is not easy. It takes a lot of planning, some sleepless nights, it can slow me down, but as of today it has not stopped me from doing what I set out to do. But this by NO means we should stop researching for a cure, for prevention, for better faster insulin, and better technology to help us until that cure if found.
And since it is fundraising time of year, if you'd like to support my efforts in raising as much money as I can for the Juvenile Diabetes Research Foundation to fund all kinds of things related to T1D, you can do so by clicking here: http://www2.jdrf.org/goto/helpcurep