More than once when writing about my relationship to the Diabetes Online Community (DOC), I have mentioned that I spent a huge part of my Type 1 Diabetes life knowing no one else with diabetes. That is not completely true. My older sister has Type 1.
So why do I keep forgetting that?
We have never lived closer than 1000 miles apart since our diagnoses. We were both diagnosed as adults at a time that long preceded personal computers and online communities. We periodically talk about diabetes on the phone or during infrequent family gatherings–mostly weddings and funerals. Although we like each other just fine, we are just not part of each other’s day-to-day lives, diabetes or otherwise.
So when it came time this summer for a long-planned family vacation and I am now blogging about diabetes, I decided that it would be fitting to interview my sister. I figured that I would learn as much as my readers will. My bribe of a late afternoon piña colada sealed the deal.
I did not tape the interview, so her answers are in my words and accompanied by my comments about her answers.
I was diagnosed in 1976 at age 24. When were you diagnosed and how old were you? I don’t know the exact date, but I was diagnosed in the winter of 1981 at age 31.
Comment: I was able to find out my exact diagnosis date by contacting my hospital. My sister has no interest in doing so.
Tell me about your diagnosis. I had been going to the doctor for six months with nonspecific symptoms and receiving no diagnosis or care plan. I came back from a business trip and was so ill that I could barely make it home. I called the doctor and was told I probably had a virus. Feeling worse in the morning, I went to the doctor’s office and remember the nurse saying “You didn’t tell me that you couldn’t breathe.” I remember nothing more until a few days later when I regained consciousness in the ICU.
Comment: We also discussed how she felt in retrospect that in the months preceding her diagnosis her doctor had only considered the possibility of Type 2 diabetes. I was immediately diagnosed at my first doctor visit and was never once treated as though I might be anything other than a Type 1. Was the difference because I was in my mid-20’s and she was over 30? Was it the speed of onset? Was it a different doctor and a different city? Or just good luck for me and bad luck for her?
What has been the hardest part of a Type 1 for you. The lows, especially since I live alone.
Comment: One of the hardest parts of dealing with Type 1 is that insulin which keeps us alive is the thing that can kill us. Most outsiders think that shots are the worst part of diabetes, but I agree with my sister that the lows are the worst.
Have you ever participated in the DOC? No. Do you even know what it is? No. Now that your sister has a blog, will you read it? Maybe, if you send me the link again.
I have several other autoimmune conditions. Do you? No. I do have high blood pressure and take meds for that. Other than that, it’s just insulin.
Comment: I have several other autoimmune conditions such as hypothyroidism and an inflammatory type of arthritis. But I don’t have high BP.
You have always been more open about your diabetes than I have. You took injections in the kitchen while I always went to the bathroom. Did you notice this? No. What are your opinions on this? It’s something I have to do and it’s no big deal. It’s who I am.
Comment: I am more open about my diabetes than I used to be. I’ve been on a pump for nine years so the issue of injecting in front of others is moot. I probably still wouldn’t be as blasé about it as my sister is.
As you consider the future, what are you afraid of in terms of diabetes and your health? Nothing.
Comment: When I mentioned my fear of being in a nursing home and being killed with too much insulin or bring forced to run high all the time, my sister said her hope is to have something massive like a heart attack kill her before she gets to that point. I think we all hope to stay healthy up to the point of death, but most of us don’t get that opportunity.
What else we discussed: When asked about a pump or a CGM, my sister said that she is not going there and she doesn’t want to deal with the technology. She uses Lantus now only because she was forced to switch a few years ago when Ultralente stopped being manufactured and her stockpile ran dry. She still uses Regular instead of a rapid insulin. I always laugh and tell her how much better things could be if she investigated some of the newer insulins and technology. But I don’t nag because her medical decisions are not my business. She does admit that when she retires in a few months she will start seeing a new endocrinologist. She will not be surprised if the new endo pressures her to make some changes.
My A1c is much lower than that of my sister. However, after decades of Type 1 we’re both relatively healthy. I would have a hard time arguing that I am substantially more healthy than she is. I do lead a much more physically active life than she does and maybe her regimen would not work for her if she tried to do what I do. But that’s only supposition.
Summary: Although our care regimens couldn’t be more different in terms of technology and results as measured by numbers, I think that we are definitely on the same page when it comes to the goals for our diabetes care. As my sister so eloquently summarized at the end of the interview: “My aim is to manage my diabetes so that every day in my life is a wonderful day.”
I’ll second that any day.