Sharing new technology

 

Deep in Conversation

 

Crossing the Brooklyn Bridge

 

‘Paying it Forward’

 

On my Home Page you’ll see that my intention, (probably by early next year), is for this site to become interactive. A place where you can share your diabetes story and read other’s stories. Several months ago while I was thick in the process of interviewing people with diabetes and their loved ones, I was struck by the healing power of someone talking uninterruptedly for an hour, reflecting on what living with diabetes is like. Many of those I interviewed were able to look back and see the times they’ve lived, better and worse, with diabetes. They were able to see the progress they’ve made “taming it” and/or incorporating it into their lives. Many were able to view what they’ve learned along the way both in their ‘diabetes-life’ and ‘ordinary-life’  and how their priorities have changed. How rare it is that any of us have an hour to talk to someone who both listens and wants to hear our story.

After my interviews many people asked me if what they told me would help others? They hoped it would. They told me talking had helped them. When I first heard this it surprised me. The tenth time I heard it, I was glad. The twentieth time, I knew it bespoke a universal principle; when you feel heard you can let go of what you’re carrying, at least part of it. 

As I started interviewing more people, my interviews shifted from face-to-face to over the phone. Sometimes I felt this arena was less intimate, sometimes more intimate because there were no visible judgments like facial responses. There’s an aspect of doing this work for me represented by the quote, “If a tree falls in the forest and nobody is around to hear it, does it make a sound?” I do not see the result of my work most times in any tangible way. I do not form intimate relationships with the people I talk to. But from time to time, I do make a new acquaintance or friend, and I do know from an email that I make a difference.

This happened with one young woman I interviewed in April of this year. She is 19 years old, developed type 1 at ten, she’s in college and wants to be a psychologist and technology expert to help people better manage their diabetes. She reminded me of myself. Not because I had any intention to help people with their diabetes when I first got it, but she is now the age at which I got it, and her view of the world, her curiosity, maturity, sense of responsibility, and questioning mind, sounded like me at her age. 

Since interviewing ‘A’ five months ago we have maintained an email correspondence and I have become a sort of mentor. It pleases me to pass on my knowledge and experience, and while I can’t speed her journey, maybe I am making the waters just a little  smoother. I was tickled when earlier this month she wrote to me:

“It just came to me how much I’ve learned about myself and being a diabetic through your recommendation to read a couple of blogs. I’m up-to-date on technology, news, and all the current events with them. It’s added a whole new level of meaning and personal understanding to diabetes –nothing that I was able to get from seeing a physician or nurse 4x/year since my dx. It’s almost as if Drs only know the basics in the clinic and so much of the condition is a day-to-day battle that Drs can’t be there to help out or offer input on the little things; those of us who are “in the trenches” can offer more support and medical advice (or at least hunches) than any physician. We’re all walking calculators, scientists, and neurotic over-thinkers with a great sense of humor and positive view of life (because that’s what we need to survive). Reading these blogs has been the best treatment, therapy, and source of knowledge I’ve ever found. In fact, it makes me a bit more proud to be a diabetic and whole lot less lonely. Reading about their frustrations, successes, tips, and funny stories has brought new meaning to my life, truly invaluable. I hope I will be able to keep up with them when school starts. (I read three: Diabetes Mine, Six Until Me, and aiming for grace–and of course, yours). They are a source of great inspiration and comfort.  So thanks. 🙂

‘A’ and I had agreed when we talked back in April that we would meet during the summer since she lives less than two hours from Manhattan. This past Saturday she took a bus into town and I took the subway and, along with my husband, we met at Penn Station and spent the day touring around and getting to know each other. Over lunch I showed her the new lancing device I’m testing and she sampled it, agreeing how painless it is. We took the water ferry over to Fulton Ferry Landing under the Brooklyn Bridge. Then proceeded to walk back into town over the bridge since this is a must on my tour itinerary. While crossing the bridge I told her I thought my sugar was dropping. She offered her meter to test, but I said I’d wait another 10 minutes and keep tabs on how I felt. Shortly thereafter, on Chambers Street, we sat on the steps surrounded by majestic buildings (I realized I should have more lows and stop to enjoy the grandeur of Manhattan more) and I tested. Sure enough, 58. She and I both took some Sweet Tarts and rested for a few minutes. My husband later commented on the ease with which she and I shared meters and strips, but this is our special club after all. Revived, we scooted up to the Mac store in Soho, where she bumped into her best friend from high school who was in town from Michigan. We then meandered into Greenwich Village, and sampled some outrageous sorbet/ice cream – yes two diabetics who once on line said to each other, “I’ll just get a taste.” We are kindred spirits in the responsibility camp. Finally, my husband and I escorted her back to the bus to return home.

In the end I was pleased I could show her the city, and more pleased when discovering that she doesn’t have any friends with diabetes and is questioning  herself as to, “Whom do I tell? How much do I tell?,” that I could be a sounding board. Yet, I felt just a little niggling feeling. I had wanted to do more for her, share more, reach out more, impact her more. Yes, this niggling was about me. My husband would say (probably did say) it is my longing, my wanting to connect with others at a deep level, almost hooking into them as if Captain Hook’s hook would come out from my chest and grab onto yours.

The next day there was a flurry of new emails, pictures exchanged, and there it was — the questions I expected I would hear while we were together roaming the city. ‘A’ asked in her thank you email, “Is diabetes a factor in why you don’t have kids? I was surprised how involved your husband was with your treatment. How did that happen?  I’m just curious because it had to have been you and diabetes for a number of years before you met him and I can’t imagine I would be very willing to allow another to wedge himself into the relationship. Do you feel guilty that he has extra worries about you that he wouldn’t have about a healthy spouse? Only in the last month or so have I publicly proclaimed anything about blood sugars–e.g. announcing that I’m low or high. I’m still not sure I like being so public.  It seems more like an excuse for my behavior, a crutch that I’m letting other people know about rather than just sucking it up and dealing with it.  Then again, it’s kind of nice to let them know about it, just so it’s not so foreign.”  And finally, “I loved our conversation re: the .5 vs .25 units of insulin at lunch. That, there, was worth the trip!”

So, I got my confirmation that yes, I may be making some small difference. Maybe that’s part of my healing, that I get to help someone by sharing my knowledge and experience, just as sharing our stories are healing for each of us. It also says something else on my Home Page, that “Each one must teach one.” I believe this is true in life, and, the greatest gift you can give to another diabetic. Remarkably, it’s a gift we give not just to another, but to ourselves. If that’s selfish, I really don’t mind, since it profits everyone. But you already know that, I’m sure.

Times change, and we learn a thing or two. (Driver, my dad)

 

I’ve been doing a lot of flying lately. A few weeks ago I flew to the Children with Diabetes conference in Orlando. I just flew back from Tucson. While aloft a few days ago in JetBlue’s comfy seat, I took out my syringe and Humalog to dose for my snack and realized how many things I no longer do that I was once taught to do. Conversely, I thought about how many essentials I’ve learned, through either personal experience or fellow diabetics.

I don’t use alcohol swabs before injecting. I stopped that in 1986 when I moved to Tokyo for six years. At my new Japanese company clinic, the nurse, who appeared to have never seen a diabetic before, handed me a jug-size bottle of alcohol and a suitcase-size bag of fluffy cotton balls. The type that shred and stick to everything. As she handed them to me in a brown paper bag, we both shared a look of dismay. That was the day I stopped using alcohol before an injection. (I later read from an official diabetes source that it is not advisable to use alcohol swabs because they dry out your skin.) 

I don’t use cooling packs for my insulin. Maybe if I were going into the Ecuadorian jungle for two weeks I’d need them, but my usual jaunts always seem to have a refrigerator at the end, and moderate enough temperatures. As for insulin overheating in the car, I don’t have a car. 

I don’t have special compartmentalized bags for my supplies. My syringes get disbursed throughout everything I wear and carry. A few in my pocket, purse and zipper linings. When traveling, my insulin goes in my fanny pack or purse. Right now, I’m trying out the new UltraMini meter from OneTouch. It straps right onto my fanny pack, and I can fit it in my purse. I just don’t see the need to take a big carry-all. 

I don’t use new lancets each time I finger test or a new syringe each time I inject. Really, does anyone? I know the points on these instruments become dull over time and can be tough on your skin. But I must have magic fingers. They heal immediately after being punctured. Maybe I’m just this side of a Clint Eastwood character, hanging tough. I change lancets and syringes when I pay my monthly maintenance or when I notice my pain threshold lowering. 

I don’t check my feet or in between my toes every time I see them. Stepping on assorted items, crumbs in my house, fallen acorns around someone’s pool or that damn pen I couldn’t find, reminds me that my feet are fine and feel every sensation. (If you have neuropathy in your feet, ignore this advice!!!). 

I do not advocate you do what I do, necessarily. We must all be responsible to our own bodies and needs. I am only making the point that many of the things we may have been taught are outdated, and that our fellow PWDs (persons with diabetes) are our teachers, as much as our health care providers. 

If you’re new at this diabetes game, you’re probably overwhelmed with all you think you have to do. Actually, I heard once that a group of diabetes educators stopped counting diabetes tasks when they reached 150!  So I’m going to lend you my “To-Dos” list. It is very small and it has served me well:

1. Learn everything you can – go on websites, question your health care providers, read magazines, attend local classes or a support group. There are always tips to be had.
2. Test your blood sugars frequently, including post-prandial checks (that’s two hours after you begin a meal.) and correct when necessary. This, above all else, has kept my A1cs in the 5s.
3. Test before bed, I always do. If I’m low, I take a few bites of an Extend Bar, it keeps me level till morning. Before, I was a sweaty, babbling mess at      3 A.M.
4. Move everyday, it makes you more insulin sensitive. I walk an hour a day. When I was sick and didn’t walk for two weeks, my sugars rose.
5. HABIT-IZE. Turn tasks into habits so you can stop thinking about them. For instance, I test first thing upon waking, and I always keep my meter on my kitchen counter. No looking, no excuses.
6. Before you run out of stuff you need, get more.
7. Ask for help when you need it, ask people to back off when you don’t.
8. Bring food to the airport because: 1) They serve next to nothing on airplanes, and 2) You won’t find anything worth buying in the airport you’ll want to eat.
9. Use diabetes as a way to feel proud about how much you’re managing in addition to your daily life. You won’t get a medal for managing diabetes, but I certainly think you deserve one.
10. (Since no list can end with 9 things), “Use caution when following this advice: side effects may occur”.  For instance, you may just find life a little easier.