The Problem

It is time that the full scope of Type 1 diabetes is acknowledged, which includes millions of adults who are too frequently misdiagnosed as having Type 2 diabetes, an altogether different disease.

Sunday, March 15, 2015

Reflections on 20 Years with Type 1 Diabetes

I was diagnosed with Type 1 diabetes in April 1995, when I was 35 years old (yes, do the math, since it’s been 20 years that makes me 55 years old and eligible for the senior discount at my local public swimming pool).  In March 1995, I had been trying to get in to see my doctor, because I knew something was horribly wrong with my health.  My doctor’s office gave me an appointment one month out; however, I was going downhill rapidly, and although I did go to my doctor without an appointment, I was sent to the hospital because my blood glucose was 619 mg/dl and I had all the classic symptoms (polyuria, polydipsia, polyphagia, and extreme weight loss).  In the hospital, I went into diabetic ketoacidosis (DKA).  I cried that entire night in the hospital, devastated by the diagnosis that I thought would ruin my life.  My grieving process and my recovery from DKA took about 10 months.  It wasn’t pretty.  Twenty years later, I know that diabetes sucks, and anyone who tells you otherwise is not a realist.  But I can also tell you that you can live really well in spite of Type 1 diabetes, and that having a life-threatening chronic disease can bring unexpected gifts. 

What I have learned:

Find friends who have Type 1 diabetes:  This is the big one.  They can be online friends, or in-person friends, but it is important to have people in your life who truly understand.  People without Type 1 diabetes can truly support you, but people with Type 1 diabetes really get it.  The first people that I felt inspired by were people I met at the now-defunct International Diabetic Athletes Association (IDAA), which thankfully I found shortly after diagnosis (I am a life-long athlete).  I had found my tribe!  These were people that were thriving, not without their struggles, but thriving.  Now I have TuDiabetes.org friends and Facebook groups, and also a special JDRF-sponsored Type 1 women’s group that meets near my home.  The JDRF group has meetings, potlucks that are so much fun that one woman declared, “Who knew that diabetes could be so much fun?!”, we attend diabetes conferences together, and we have celebrated the pregnancies and babies of quite a few women!  At a recent TCOYD (Taking Control of Your Diabetes Conference) talk on “Diabetes and Emotions,” my Brazilian friend Fabi was near me, but between us was a man who has lived with Type 1 diabetes for 57 years.  At the end of the talk, Fabi and I rushed to each other for hugs—and the 57-years-T1D man said, “I need a hug, too.”  We had a big group hug, and I said to the man, “Thanks for being an inspiration.”  He smiled and seemed so pleased.  It is a good maxim to treat people, including yourself, with kindness and compassion.  Lend a hand to those in need, and reach out for help when you need it.  Type 1 diabetes is an isolating disease, but you will not feel alone if you find your tribe.

Be the tortoise, not the hare; slow and steady wins the race:  This is not a sprint, it is an ultramarathon.  The daily grind of Type 1 diabetes, all the things we have to do to stay healthy, is considerable.  Stay motivated, stay focused, and when your motivation flags, ask your friends who have Type 1 diabetes to help you.

You don’t have to give up everything:  Dark chocolate, macadamia nuts, and wine are all low carb or no carb.  Chocolate-covered macadamia nuts and a glass of wine, anyone?  Another thing—my mother always advocated moderation—she lived to a healthy, vibrant 93 years old and knew a thing or two.

Do your best with blood sugar control, take the best care of yourself possible, and live your life:  Much of my diabetes care is done on autopilot—not without awareness, but without obsession and stress.  It isn’t always that way, but my life is better when not consumed with diabetes angst.

Technological advances make lives hugely better:  I was in my endo’s office the day that Humalog, the first fast-acting analog insulin, was released.  After R (regular insulin) and NPH, Humalog was a miracle, and dramatically reduced hypos in me.  I have used an insulin pump for 17 years.  Although the insulin pump is amazing and I would never choose to go back to MDI (multiple daily injections), the Dexcom continuous glucose monitor (CGM) is even better.  I can exercise, I can do a 3-hour yoga class, I can go to a movie with almost no worries with my trusty Dex attached to me.  Bionic pancreas here I come!  [Note, I recognize that many do not have access to these items.  But don’t be afraid to be your own advocate and ask for the best tools available….the squeaky wheel gets the grease, or the best tech as the case may be.]

One size does not fit all:  The only sure thing about Type 1 diabetes is that we all need exogenous insulin (oh, except for some people in their honeymoon period).  When you give advice, say, “This worked for me, it might work for you, but then again it might not.”  We are all unique individuals, and diabetes affects each person differently.

Exercise, yoga, and meditation are magic “pills” for me:  Find something that works for you, that calms your mind, that helps you be “awake.”  I love to hike, I love all things fitness, and I have avidly practiced yoga for 21+ years.  I always say, yoga is easy, meditation is hard, but still I meditate.  Find your magic pill.

Doctors are not always right:  I was initially misdiagnosed as having Type 2 diabetes, by the endocrinologist at the hospital, because I was 35 years old.  But if the doctor had made the diagnosis based on etiology and phenotype, I would have been correctly diagnosed and not had to suffer being taken off of insulin.  The CDE (Certified Diabetes Educator) and nutritionist at the Diabetes Center where I was sent for classes realized I was not a Type 2, but they would not contradict the endocrinologist.  But I would and I did, and I was correctly diagnosed within a week (but that was one week off of insulin just after DKA).  I repeat, doctors are not always right.  On the other hand, today I am so fortunate to have an amazing endocrinologist and GP, who work with me and help me and support me.  No blame, no shame, just a helping hand on the journey.  Just know, you need to be your own best advocate within the medical system.

Finally, test, test, test!  Test your blood glucose often.  Know your numbers (BG, A1c, blood pressure) and do your eye, kidney, and nerve tests.  See your doctor regularly.


In Type 1 diabetes, I actually found my mission in life, which is to change the perception that Type 1 diabetes is a childhood disease, and to work towards getting the many, many people with adult-onset Type 1 diabetes correctly diagnosed and treated (most are still misdiagnosed).  Out of the worst, the thing that I thought would ruin my life, came my purpose in life.  I wish I had not acquired this disease, I don’t wish this disease on anyone, but my life was not ruined and I am living well and with purpose (mind you, not without the occasional diabetes day from hell).  Before 1921 and the discovery of insulin, people with Type 1 diabetes died rapidly.  We are given a second chance—let’s use it well.