What happens when you have a bad cold and sore throat, you’re going twice a week for physical therapy for ankle tendonopathy, your upstairs neighbor had a fire and water is leaking through your kitchen ceiling and the insurance guy has just said, “Better fix this quick or you’ll have a mold problem!”  and you’re worried your editor thinks you’re a ditz while you’re working so hard you feel like you’re running just to stay in place? I’ll tell you what happens, your blood sugar goes up for the umpteenth time.

Ah, but since these are a new grouping of potential causes than the usual, from what is my sugar rising? Which can I change to have it come down again? The cold will tell me in two weeks, the fire damage may take considerably longer. The book issue is an ongoing event till December 15. 

Or is my blood sugar up because of the cumulative effect of all this stress? Or, because due to all this stress I’ve fallen woefully far from my exacting eating regimen, (yes, my knife is edging more of that halvah off that wedge and the rings around my stomach seem to be multiplying), and we know the ankle has kept me off my power walking track for hmm…3 months now…

If I didn’t have such a blasted headache right now I’m sure I could clearly see the answer to my query. Or, maybe not. Day thirteen thousand, one hundred and forty with diabetes. Will this record ever end?

I haven’t mentioned it before but 5 weeks ago I hurt my ankle. Really hurt it. I either tore a tendon, tore a ligament or have a severe stress fracture. Although I’ve been to my podiatrist twice now, the diagnosis is still unclear. The X-ray showed no break and while the doc didn’t feel I needed an MRI, I figured if my insurance paid for it I did. I want to know we’re doing everything possible to get this fixed as quickly as possible (which already seems impossible after 5 weeks) because not walking is having several unpleasant effects on me. 

1) If I ever needed confirmation that I’m more insulin-sensitive when I exercise I have it. I’ve had to up my Lantus from 12.5 daily units to 14, and add an extra unit or two to most of my boluses. Granted, I use little insulin compared to many, but for me this change is no less significant or upsetting. My blood sugar’s been far less well controlled and predictable. The first week figuring out the new numbers was an exercise in frustration, irritation and downright pissed-off-edness. 

My one hour walk around the park I saw, plain and clear, had been performing blood-sugar control magic. Part of that magic was my numbers were better the whole day, and relatively similar day to day, so fairly easy to predict. There’s the second unpleasant effect – losing that predictability. Once you get your routine down, you know that having it wrecked feels like starting all over again from the day you were diagnosed. Yet I didn’t know just how unprepared I was for retooling again or how much it would bother me. By week two, maybe three, I had made the adjustments, but frankly still resented that I’d had to. Ah, thatpothole again I spoke of many, many posts ago. You’re zipping along and then wham, something unexpected causes you to go on tilt again. 

Unpleasant effect number 3) While I don’t think my one hour walk causes any weight loss, it does keep my weight in check. Now, in contrast, I feel the fat deposits around my stomach and thighs swelling. My resentment of my body’s failure is now on two fronts, foot and fat. Of course that’s on top of the underlying resentment – that I work hard at having good control and being immobile has made my diabetes uglier to manage. My resentment obviously peaked two night’s ago when I ate everything sweet in my house: gingerbread, chocolate, halvah, and washed it down with too much wine. That was me hitting the brick wall. Thank god that’s over, now I can move on. Of course after I tell you the last unpleasant effect – my mood shift.

4) I’ve basically been a very unpleasant person around my husband, whiny and petulant. Good soul that he is he hasn’t filed any papers, instead he just left for Holland. Of course, he works there so I don’t think the two are related. But being housebound and not being able to scoot from here to there, having lost an enormous sense of freedom and spontaneity, not being able to clear my head outside my immediate environs, see endless sky and be a part of life all around me, has deadened something in my spirit. We are social animals, after all, and my social life is largely apartment-bound.

So, what’s the message? I don’t really know. Am I just verbally vomiting? Maybe. Interesting though that I picked the day I’m actually feeling better to write this. Maybe this little patch of light creeping into my head today is offering such relief and hope that I dare to look at how poorly I’ve been feeling, and get back on track. 

You should know, while I preach looking for the good in things, which I absolutely believe is the way to go, I am like you a student and a work in progress. So putting my own, look for the good, words into practice I could say from this little experience: 1) I have more compassion for people who are struggling with their weight or are incapacitated in some way. I really, really do. 2) I am reminded (seems to be one of my life lessons) that I don’t have to overachieve to feel I’ve achieved something.  My ankle debacle came from taking my daily walk too aggressively – not missing a day – walking faster than usual – walking another hour most days as well – and then this overloaded ankle twisted in a pothole on a city street. All that effort I put into my walking to more aggressively keep my weight in check, all that speeding up has brought me to a standstill. That concern with weight comes from having been a heavy teen. My, my, such old programming still exists! That concern with overachieving is just more of the same entrenched, old programming. Seems my head needs to be re-booted. Well isn’t my current condition delivering the perfect symbolic message!? (See photo)

Then too, maybe I caused this because in the world of Louise Hay, spiritual teacher, my world is shifting rapidly and I am a little frightened of all the new things I’m taking on and all the new places I’m going. Did I slow myself down so that I could control it all, because I am an uber-controller? Not of others, just myself. “What I know for sure,” as Oprah would say, is when I’m faced with big, new things that feel overwhelming, my first impulse is to freeze and fear. But then what gets me through is to chunk it down into small steps. To take one small step at a time and create a small success. One step, one success builds me a road to the next step and the next success. Just writing that is soothing.  So I could say tallying my accumulated good the last one is, 3) I have been reminded that this small-step approach is what I need to do with all that’s in front of me. 

After all, the only race I’m in is the one I’ve created in my head. I guess my deeper wisdom knew that I needed to remember that. And like the tortoise and the hare, sure and steady wins the race. I just wish all this knowing had come to me in a dream, while slumbering peacefully in my space-age tempur-pedic bed, not in a pothole on 81st street. Then again, I could choose to see this whole affair as a symbolic, celebratory “kick-off” of all the many good things yet to come this year. 

Don’t throw a day in the trash

 

My mother got a new refrigerator two months ago. It’s part of the renovation she’s doing on my parent’s new apartment. It’s probably the first time in 20 years she’s bought a major appliance. The refrigerator is made in New Zealand and she really liked it – until it stopped working.  To say the store where she purchased it was in no way customer-oriented was problem enough. An even bigger problem, however, was that my mother refused to send the refrigerator back, or make waves, because she didn’t want to be a problem.

Many patients exhibit this same kind of behavior. They think, well… the doctor told me to take these pills… I don’t see any difference in my blood sugar, but the doctor must know best. Would you be surprised to know that most physicians, outside of endocrinologists, get one day of diabetes training in medical school? My type 1 friend’s doctor told her to eat a bowl of cereal when she experienced hypoglycemia. Hey, when your blood sugar’s headed below 50 and you’re on your knees, a nice crunchy bowl of toasty oats is not the answer – glucotabs, Coke, honey and pure glucose like Sweet Tarts are! But she learned that from me, not her doctor.

Another friend couldn’t figure out why, when doing everything her doctor told her to, her blood sugars hovered around 200. Well, maybe it’s because he doesn’t think that’s anything to be concerned about. Has he heard the only thing that prevents or reduces the risk of diabetic complications is tight blood sugar control? 200 to me is like unfurling a blanket in the park and laying it with baguettes, potato chips, bagels, cheese cake and tootsie rolls. To be fair, the way health care is set up today, most patients get a scant 10-15 minutes with their doctor. How can you possibly get all the information you need in such time? How can your physician get to know what he or she needs to know to help you? But if they’re not asking and you don’t tell no one wins. And you definitely lose.

Then, so many patients are more concerned about being nice to their doctor than getting the care and treatment they need. They are afraid to rock the boat or doubt their own feelings in front of a white coat and stethoscope. They think they know nothing in the same room as someone who went to medical school. What I know for sure is that patients give their power away every day — and this makes it harder for their health care provider to help them. We patients are consumers of health care. Yet, we hardly think about it this way. If your doctor isn’t solving your problems, or even particularly concerned, you need to be.

When my mother’s refrigerator first arrived she had chest pains for three weeks. No, not anxiety. It was coming from opening the refrigerator’s tightly pressurized door. She told me pretty quickly, but took another two weeks to tell the store. They sent over a not-too-pleasant repairman who made my mother think it was all in her head. Until he said, “Best thing to do is tape some pennies between the unit and the door, some people say.”

That worked, but then the refrigerator’s temperature began vacillating between 38 to over 55. Everything perishable, hundreds of dollars worth of groceries, found the trash can their new home. I urged my mother to call the shop and return this lemon and write a letter of complaint demanding compensation for the tossed food. “But I don’t want them to think of me as a complainer. This is a small town and I don’t want a bad relationship,” my mother pleaded.

Two weeks later she called the store as it was becoming a weekly practice to toss her yogurt and milk in the garbage. The same repairman came. “Why are you always complaining?” he asked. My mother had tears in her eyes. As he turned to leave, he obviously thought of something, opened the fridge and mumbled, “Hmm…the sensors aren’t telling me this, but it looks like the fridge might be in constant defrost mode.” “So you mean maybe I’m not crazy?” my mother urged with such hope, and, hallelujah, finally anger.

So how’s your refrigerator, metaphorically — the housing that’s keeping your bodily functions working? If you don’t think your diabetes is well controlled — maybe it’s you or maybe you’re not getting the proper care. Chances are, deep down you know which is true. Certainly the dietician who gave my type 2 overweight, uncontrolled Aunt a daily diet of 300 grams of carbohydrates must be right, right?  She’s the pro, no? No. Only you are the pro on you.

Six weeks after the refrigerator entered my mother’s house she demanded the store take it back. They told her to call the manufacturer in New Zealand. She did. Two weeks later she called the store to ask if it had arrived. They said they didn’t know, “Call New Zealand!” She did. They said it had arrived in her local store a week earlier. She called the store. They said they didn’t see it. Finally my mother said, “I don’t think it’s my job to track down this refrigerator!” Three days later, for the very first time, the store-owner called my mother and said her new refrigerator would be delivered that week.

It was, it’s fine and the food is where it belongs, and we hope won’t see the trash again anytime soon. There’s an oft-quoted expression in Japan. The translation is, “The squeaky wheel gets the grease.” It’s not fun being a squeaky wheel but sometimes that’s what it takes.

If you’re not happy with your care and you feel you don’t have the right team to help you, look further. While it’s not always easy finding a good doctor, one who knows his or her stuff, treats you with respect and will help you manage your diabetes, if you don’t look, you’re sure not to find him or her. 

Don’t throw your perishable latter years away when you could be doing so much now to preserve them. You’re the customer, and while the customer may not always be right, when it comes to diabetes-care, I guess I’m just a little prejudiced that they usually are.

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.