SweetLifeStories Diabetes Blog

A lot of people think being stubborn is an unhealthy trait. But for me, I can see that my refusal to give in to the impact diabetes has on me physically and emotionally has served a purpose. A great one. And that is refusing to give up on moving forward. Sometimes the steps aren’t easy. Other times I have been furious at being so different from friends and family. I’ve certainly cried my share of self-pity party tears–haven’t we all? I’ve sometimes run away from facing diabetes straight on. But give in? Not yet.

That’s why I read, with interest, this recent article from a 1994-2008 study on just how serious the impact is on most people who have diabetes:

World Diabetes Day is not something I’d admit giving much thought to, but then I clicked on a few links to read about so many people’s efforts trying corral awareness about the epidemic of diabetes in the U.S. and around the globe. Most of the planned activities and information is about Type 2. That’s not me, I thought. But scanning the Twitter postings, I still gasped when I read this mind-boggling projection:  It is estimated that 1 in 3 Americans will get Type 2 diabetes by 2050.

Wow! That means that of nearly every family I know, one member of that family to whom I’m connected by blood or friendship will become diabetic.  Of course, these projected stats are really pointed toward adults in their 30′s and older. But where I live in New Mexico, even now there is an epidemic of young people being diagnosed with Type 2 in their teens! In the last decade, the number of Hispanics and Native Americans succumbing to diabetes has opened an equal opportunity door to admit every ethnicity you can name.

Many of these new diabetics have to go on insulin. And despite the life-lengthening promise of insulin, it has a darker side. I know about that side because I’ve been taking insulin either through single daily injections, twice daily injections, four times-a-day injections, five-times-a-day injections, extra when-I’ve-been-sick-with-the-flu injections, and 24/7 insulin-delivered-through-a-pump “injections” for an unbelievable 46 years and 7 months. So despite its helpful properties to keep me going, it’s definitely not a cure for diabetes.

Just for the sake of having some admittedly distorted fun, I converted the length of time I’ve been taking insulin to try to ward off the evil complications of diabetes. That calculates to approximately 17,045 days or 2,435 weeks I’ve had the dubious honor of living with diabetes.  Today, my blood sugar’s a little on the high side, and I am sitting here with time on my hands, waiting for the extra insulin I just took to help lower it. But who’s counting?!?

In a further push toward masochism, my curiosity got the better of my self-control (always my nemesis, anyway) which warned me not to proceed in this direction, so I then tried to determine the number of insulin injections I’ve taken over 46 years and 7 months. In just the first 15 years of having diabetes, my average was 22,000 insulin injections! That’s a human pincusion, for goodness sake;  a government war-time experiment gone wrong, of sorts . . . 

And how many shots have I taken in the remaining 28 years? Hmmm–impossible to calculate, as I’ve been on an insulin pump that delivers insulin to me 24/7. That is, when it doesn’t clog up, run down, get detached from my body for water sports, or been set aside the relatively few times I’ve been hospitalized and on a scene-stealing I.V.

All of this amounts to a staggering impact on just one person’s life circle. So the growing epidemic is, indeed, mind-boggling in its menacing march. Beyond my grumblings about who might be responsible for this plight and my occasional epithats at the obstacles thrown at me, I still have to laugh at the craziness of it all, the ups and downs, the behaviors and scenes engendered by diabetes. What other choice is there? Usually, the laughter restores me, keeping me sane from the worry than can be so consuming.

Yet it’s interesting that I also feel a sense of honor–appreciation, if you will–to be in relatively good health after so many years grappling with this demanding disease. To live through a challenging experience usually brings deeper understanding, compassion, and a skill-set many others need. It is my hope to share these lessons and understandings along the road toward conquering diabetes–in spite of and because of it all.

So World Diabetes Day, bring it on! I hope the team players win this one.

 B well, b happy. Stare those demons down . . . and laugh just a little.

Until next time, kath

There’s NOTHING more upsetting, more disappointing, more stress-producing to someone living with diabetes or another long-term health problem than finding out their doctor is simply not a supportive team member. And by “team member,” I mean these things–all of which are essential, in my opinion, to helping me live with the ups and downs of diabetes!–

ESSENTIAL PATIENT-DOCTOR FOUNDATIONS TO BEING ABLE TO LIVE HAPPILY AND WELL include:

   1- open communication

   2- good listening skills

   3- positive outlook

   4- collaboration and TEAMWORK at all times!

   5- problem-solving skills

   6- mutual sense of caring and respect

   7- the ability to share and exchange what you know about diabetes

   8- helpful connections to professionals who can make a difference in how you deal with diabetes

   9- mutual ability to set goals and work steadily to reach them

  10- HOPE . . . POSITIVITY . . . and a BELIEF THAT ALL THINGS GOOD ARE POSSIBLE!

Why am I so burned about these issues? I have spent the better part of four years working with an endocrinologist most people rave about–only to continue hitting my head against the wall, believing he’d indeed come to know me, value my experiences, help me live better with diabetes. Recently, I swallowed hard and talked to him about what I needed from him to do well. This took courage. Staying with him was my mistake; I assumed that, given enough time, he’d come to care about me and my struggles to maintain the best blood sugars possible. So I’ll admit it right now: I was wrong! Assumptions are almost always the breeding ground for miscommunication and differences.

Yesterday, two things happened that hit me smack in the face after nearly four years of struggling to connect with “one of the best endocrinologists” in my health care plan:  My doctor–overwhelmed by entering data into a system requiring computerized (versus paper-filled) medical records–asked me question after question that proved he didn’t remember much of anything about me and doesn’t regard me as a collaborator in how “we” try to manage my diabetes issues.

“So,” he started (50 minutes later than my scheduled appointment time), “your HA1C went up and you’re not in very good control.” No questions, no problem-solving. In fact, he was so focused on his system’s red tape accountability and his own personal problems, he didn’t even follow through on the fact that no one had downloaded information from my insulin pump or blood sugar machine. Sighing, no direct eye contact, entering the most basic information including, “How long have you had diabetes?” For this, I waited an hour?

The second glaring incident came after I went home following my appointment with Dr. T. My husband related that when he’d been contacted by the doctor on call regarding his sinus infection, it was my doc who called him back. Their exchange went something like this:  “Hello, this is Dr. T.”  “Oh,” my husband replied, “Hi, Dr. T. You treat my wife Kathy for diabetes.” The shocking undeniable proof of his response? “Oh, I don’t know. Maybe. I have so many patients. What’s your problem?”

For THIS I worked four years, hoping that I could help shape this “great” doc into someone who could make a difference both for me and others? His depressed and negative attitude may be symptoms of a system that is overwhelming all of our physicians. And he has been slammed with coming to terms with developing  his own diabetes (Type 2). But I can finally solidly say, THIS IS NO EXCUSE! Everyone living with serious health issues deserves better and should seek out the best possible team you can find. Each one of us deserves to be part of that team!

So I indeed feel like a fool–disappointed, saddened, a little hopeless right now. My doctor has committed the ultimate sin by not respecting and including me. I perhaps did the same–by trusting too much, waiting too long, not listening to the warning signs  because I feared seeking out a better partner from the great unknown. But my anger at myself for allowing this situation to fester is starting to work a magic of its own–empowering me to move forward and willfully take (and demand) a different–and more positive–path. We all deserve at least that.

B well, b happy, and live life to the fullest.

Until next time, kath

Oh, the documented connections to living with the impact of diabetes keep growing and growing. The articles merely seem to confirm much of that which those of us living with the disease see in our own bodies. Every time an article is published, my less-better half–the doubting, more cynical side–shouts, “Duh! Where have YOU been that you’re just now getting around to figuring out all the problems we live with day in and day out?” Honestly, it’s enough to make you want to scream.

I took a trip in June to NYC to visit my sister Eileen. While we were getting ready for sleep at a lovely beachside B & B, the t.v. was on low volume in an attempt to quiet our thoughts from a busy day. The problem? I couldn’t hear the low volume as well as my sister. As I turned it up, she asked, “Have you thought about getting your hearing tested?” So, ever curious about the outcome, I went to an audiologist when I returned home. Her comment to me upon sharing the not-too-bad results? “Did you know that diabetes can affect your hearing?” WHAT? That’s something I never ever thought about. But, of course, the blood vessels in the ear canals are not so different from the ones in our eyes and fingers and hands that swell with the abnormal rise and fall of blood sugar levels. Dang! Who really wants to know about that?

Then, joy of joys, I came across an internet article on the link between diabetes and arthritis.  WHAT’S THAT YOU SAY? More than half the people living with diabetes will develop arthritis? Aren’t trigger finger issues, stiff hand syndrome, eye vessel changes, thyroid problems, food-exercise-weight issues and all the other things we know about quite enough?!?

I say ENOUGH ALREADY! Yes, I’ll admit I’m glad most of us are living long enough to have our diabetes-related health problems formally recognized by the medical community, but give us some help and hope–here and now! I’m multi-tasking the best I know how to try to take care of myself. The benefit? Living a wonderful life full of the things I love to do, people I love being with, pets I adore. The articles inspire me to realize just how important all these things are to me.

We can’t give up hope. But–eek! I may just have to stop clicking on and reading too many of these articles for my own good.

B well, b happy. And stay RELATIVELY well-informed–relative to what u can handle and need to know!

Until next time, kath

How many times do we have to experience trials or defeat–whether in our own lives or those of friends and family we love–before it all adds up to feeling like we’re running into a brick wall and there’s no place to go? Forward, and with a positive mental outlook, that is? What are the things that trigger feelings of being a victim, being unable to win even a few points in the game of life, and block us from jumping into the things we love to do with gusto?

Sometimes it’s so hard, living so long with diabetes. For me, that’s 47 years this month. I find the ups and downs from my ever-changing blood sugars infiltrating my thinking, turning the positive viewpoint into negative. Not always, of course, but it can be overwhelming emotionally.

Small pains, like what I have recently felt in one of my feet, can trigger enormous fears that stem from the warnings that bombard us of what can happen if you don’t take care of yourself. Those stats aren’t pretty. And even if you do your best, the threats to life and limb if you live with diabetes are still there, insidiously chipping away at your mental health. It’s is so much work not to fall into the stance of being a victim when life feels discouraging! How do we combat this constant worry when every issue is so, well, real?

I’ve spent a few days worrying about the pain in my foot. I’ve limped around, feeling frightened beyond measure that it could mean something terrible–amputation, just one of a diabetic’s worst imaginings.  There, I’ve stated one of the complications I never ever want to think about!  But . . . what to do? Always looking to be proactive, I went to exercise class and wore good shoes. I attended a boot camp (once!) seeking to lower my glucose level. I soaked my foot. I made an appointment with my accupuncturist to have her look at my foot and treat it, thinking it wouldn’t hurt to increase blood flow. But today, still no change for the better. A downer, for sure.

Finally, I’ve decided to turn this bruising mental game around. After working the morning in the clay studio and hoping to lose my worries in coveted creative time, I finally confronted my pain and shouted NO MORE!  I am calling my doc’s assistant–someone I trust–to let her know about my foot (which feels like injured tendons or stretched ligaments). I’ll see her in just a few days.

Being a Type I diabetic most of my life, I can sometimes be melodramatic about the “what if’s” — but so what? Recognizing what I don’t want to happen (complications!) compels me to be more proactive about my health, and less willing to take the brunt of whatever issues come my way. I work hard to physically manage my diabetes. Being mentally on top of the game is admittedly harder, but the way we face our real health issues and manage our fears is all part of the game of life. I do the best I can, which is usually enough. So, I hope, will you.

B well, b happy. 

Until next time, kath

sometimes it takes something that puts fear into your heart to get you to move forward.

for me, it came within days of running agility trials with Zoe, my 5 year old whippet. the chant of “something’s wrong” came in the form of pain; aching in my foot that wouldn’t go away despite soaking and massaging it in hot baths, and getting extra accupuncture appointments designed to increase blood flow. it stayed, along with much higher than normal blood sugar levels, that swept a raw fear into my heart and mind.

that kind of deep raw fear is something that sometimes gets the better of those of us who live with diabetes. it’s like a refrain–a low pulse lurking in the background of our lives, but there nonetheless, whispering: do you think you can escape the long-term effects of diabetes? this is IT for you; you might lose your foot or your leg if you don’t get those blood sugars down NOW!

i always try my hardest to keep my sugar levels low. but sometimes, it’s a losing battle. insulin resistance? maybe. stress? probably. usually, these episodes resolve within a few days or hours, and i go back to being my more relaxed self. happy in being and doing so many things i love! but this go-round, lasting almost two weeks, definitely rattled me.

how did i cope and what did i do? i kept upping my insulin (higher basal rates on my pump and giving extra boluses). and of course, when too much insulin hit me, i had several severe reactions (low blood sugar episodes). then my blood sugar level rebounded spitefully–into the 370 range. but at a friend’s suggestion, i joined a Zumba exercise class. it had been a long time since i attended a group class like that, but it helped. finally, my blood sugar levels came down, and the class lifted my mood and worries.

hooray for the benefits of exercise. i was even able to go without formal exercise the very next day; thrilled to be on a photography trip with girlfriends. but these kinds of incidents remind me that quality time doesn’t just mean time connected with others. it’s obviously critical–whether or not you live with a disease like diabetes–to be connected to oneself in order to make your own life as positive and healthy as possible. and yes, Zumba’s on tomorrow’s schedule.

B well, b happy. And keep trying to stay connected!

Until next time, kath

Jules and me, we go together like pb & j. We’ve shared our triumphs, worries, and defeats over 25 years. Our husbands laugh and share stories about our sometimes obnoxious low blood sugar behaviors. I don’t know what I’d do without Jules in my life. She’s my touchstone. A sister of the highest order.

Today, Jules emailed to tell me she’d undergone laser treatment yesterday. A visiting once-a-month specialist from CA who collaborates with her regular eye doc came to do the surgery, and the news is GOOD! No pain, no more floaters, more oxygen restored to the eye, and little likelihood of vision loss . . . all due to the use of the most modern equipment and genius skills of a retinal specialist. A miracle conducted in the context of everyday living, so taken for granted.

Both Jules and I can breathe a little easier now. We can get out our calendars to schedule more SOUL-TIME together. That’s my euphanism for what’s good for all of us–no matter what challenges we face. I’m so grateful for the small miracles that surround us.

celebrating Jules' bd 2gether

B well; b happy.

Until next time, kath

Oh brother, what a week. After returning from the hottest week on record spent in Los Angeles with my kids, the phone call about my results from 5 long days of wearing a Continuous Glucose Monitor (CGM) finally came, and the news wasn’t what I expected. The conversation went something like this:

   “Kathy, your HA1C (hemoglobin A1C) was high.”

   “Oh? Well, I’m not surprised. How high was it?”

   “8.7.”

And I thought: OMG, in the years since we’ve been able to measure average sugar levels carried by blood cells, I’d never had a higher number. I felt AWFUL. Actually, like I was really a bad person and deserved some type of punishment.  This . . . despite the fact that I’d been closely monitoring my blood sugars almost every 2-3 hours during the time I was awake, and trying to fight rising glucose level readings. Truthfully, I was terrified, even before the nurse’s phone call. I wondered if, for some unknown reason, I’d started to become what they call “insulin resistant.” Not a good thing when you have to take insulin 24/7 and try to thrive on it!

But then, my thoughts bent on the why’s and ways to problem-solve them were startled by the nurse’s next comment:  “We can’t include you in the Type 1 Study.”

WHAT???? My heart thudded. Me, a virtual poster girl for “talk with me and be inspired about how to live well with–and in spite of–diabetes?”  I was positively horrified. But there it was: I didn’t qualify for the study. I was . . . in a word . . . rejected!

It wasn’t the high HA1C that booted me. The study’s goal is to analyze how much impact the timing of insulin prior to 3 major meals/day impacts control. In my case, being small (5 ft tall when cheating), I’ve learned to try to control my blood sugars and try to avoid big ups and down swings by eating very small amounts of food throughout the day. This works a little better for me than eating a few medium-large meals each day. So, yeah, I’ll admit I’ve known my eating patterns are a little outside the norm. And it turns out that study participants need to eat a lot more carbs at each mealtime than I typically do. So I understand this issue and my (gulp) disqualification from the study.

That reasoning, I can take. The abnormally high HA1C, not. Monday I’m off to the gym. Punishment or reward? It’s such a thin line. Only time will tell.

B well. B happy.  Until next time, Kath

Yes, I’ve known for quite some time that dogs, especially those who tend to be inbred or aging, can get diabetes. But like the epidemic now surging in Westernized people across the globe, why are so many more of my friends bemoaning their beloved pets succumbing to this disease?

It hit me between the eyes just last week. While I was searching for a new brand of what I hoped to be benevolent (as in, free of most additives and cancer-inducing chemicals) dog kibble for my own beautiful whippets, I saw more than a dozen specialized products on the shelves, specifically for dogs diagnosed with various health issues; digestive, old age, dietary (for dogs deemed too fat), diabetes, and other assorted problems. And I wondered if this phenomenon reflects that we are indeed hyperaware and better able to diagnose health problems in our pets, or whether the increase in specialized pet foods is truly correlated with environmental triggers that attack our pets’ state of health and their very lives. And what does this imply about how we are living our own lives?!?

I don’t have any answers to this; just suspicions. but I don’t like it. Even my oldie-but-goodie oldtimer near-13-year-old whippet Mandy is looking a bit plump and sausage-like. I thought: How embarrassing for a sighthound to come down diabetes! And last week, I actually whispered to her, “Well, if you do come down with diabetes, maybe you’ll go down into the Guinness Book of World Records as the first sighthound ever to have such a disease.” But needless to say, I hope not!  The outcome for dogs living with diabetes is not good; blindness usually comes within a year or two of diagnosis, and lifespans are considerably shortened. I personally watched my close friend Cyn administer two shots of insulin every day to her beloved miniature poodle, and I recall hearing how the dog (and she) suffered through this “fix.”

Not to be stymied, I ran right out to buy special low-cal food, just to circumvent the possibility. And, as an unexpected bonus, Mandy and I are on a regimen of near nightly walks, towed along by my younger whippet Zoe.  Thank goodness for the benefits that come from living with pets! I just might be able to walk myself toward greater fitness and, along the way, stave off a high blood sugar or two.

B well, B happy.  Kath

What a lazy weekend! Needed it after the shock of my doctor appointment on Friday, so I’m just lying around reading and getting happily mired in Dan Brown’s The Lost Symbol, thinking about what my own book choice will be when I host my fellow book club friends this coming May.

So you may be wondering: What happened at my Friday appointment? Good communication with my endocrinologist, sound caring advice, and then a little shock(er) as he dictated notes to my PCP:  “. . . osteoporosis assessment needed, with diabetes a contributing factor.” 

WHO THE HECK KNEW THAT SURVIVING DIABETES AS A KID COULD IMPACT SO MANY OTHER ISSUES RELATED TO MY GENERAL HEALTH?!?  And dang-it: To whom do I file my complaint?!? 

I had triumphantly announced to Dr. P:  “I’m exercising a few times a week, snowshoeing (on my shiny new snowshoes), have even gotten back to x-c skiing a few times, and I feel STRONG!”  I wanted to SING it out, I feel so good about being able to do these things. Grateful to be active, too, after living through 2-3 years of lower back pain before undergoing a laminectomy and successful L4-L5 spinal fusion.  So I obviously felt a little crushed to hear my doctor’s words, thinking:  What is the meaning of this?

Seems like no matter what I try to do to make a difference in my life and be healthy in body, heart, and mind, the diabetes is determined to win. What a tug of war! But just as soon as I feel pressed to submit, my competitive side and my blatant defiant streak pop up and remind me:  Stick out your tongue at this threat! Keep doing what you’re doing! Breathe, step forward, and c’mon–pull harder on the rope.

It’s all part of the battle in life, and I can’t give up on doing things that make it meaningful. Every act, each determined thought, makes a difference, right? Let’s have the battle scorecard read: KATHY: 4 (the winner); DIABETES: 2 (bruiser-loser). Take that!