Tag Type 1 Diabetes

Touching the Future

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November is Diabetes Awareness Month. The diabetes that most are aware of, I think, is Type 2 Diabetes. This is good, I suppose, as the condition has grown to epidemic proportions.

More people are unaware that Type 1 has also increased with great regularity. This condition afflicts children, as well as adult onset victims, but what exactly is the difference? Type 1 is in no way connected to weight or “bad sugar” and diet behavior. It can also not be controlled, except with the use of insulin.

As I was diagnosed after a bad case of childhood flu, I’d still say perhaps some Type 1 is caused by a virus. I’ve met many who’d swear to that and I put myself in that category, not that I was ever listened to as an adolescent. At any rate, it’s hard for me to be certain of how I feel about “awareness.”

During most of my lifetime, I have not given myself shots in front of people. Some today actually consider this an unhealthy attitude, but I was extremely self-conscious about being different, and so medication became, to me, a very private matter. I was a proud adolescent, and I simply memorized the diagrams in the “shot brochures,” the ones picturing the body with certain sections shaded as suitable for injection and absorption. The upper arms and thighs, the hips, and even the stomach are all “fair game.” The diabetic is also told to vary the injection site, to space the injections out say across the leg or down the leg, and then, the child should perhaps move to the other leg.

I’m almost sure I gave my first shot in my thigh since that site had been mentioned and re-mentioned in the literature. Also, when I’d tried to inject my upper arm with the opposite hand, I’d found the reaching over myself much more difficult than one would imagine, perhaps due to my short arms. However, I could reach my youthful, then “good-looking” legs–the same legs I wanted to look good when I wore a swimsuit or shorts, or whenever I sported whatever tan I could muster. No matter what healthcare professionals swore, my blunt needles left marks. I had “tracks,” I thought. At times, I suffered bruising.

I went to college during an age when drugs were turning up everywhere. I was once at what I had been told was a “fun party.” We were out on a farm “off campus,” so many young people getting to know each other, talking under the stars. No it was not Woodstock and no one was naked. Everyone was just generally having a good time. Then the human “stars” arrived, a couple from a popular bar downtown. No names are in my memory, not even clear faces. Just a medium built, muscled guy, with shoulder-length hair, and he walked with a silver-balled cane. I have no idea why he was “the star.” He was wearing spats. The girl, of course, had long flowing hair.

I do remember a while later, in the haze of moonlight, that I climbed a ladder to get on top of the garage. Not one of my usual activities, but I guess I was trying to be “wild” by joining the group that had moved up there. What I saw on the flat roof was the same man getting ready to “shoot up.” What I did was climb back down. The stars reeled overhead. I told those right behind me on the rungs that I was going to be sick, and the way down cleared.

How could anyone do that? This was my only thought. Why would anyone do that willingly to one’s body? Not that any of the party-goers or “cool people” knew then or probably know now much about diabetes. Let’s hope they learned more about life and are still living it. I have no other memories of the night, except that I think I looked for my closer friends again and left soon thereafter. Maybe T1D saved me from the hippie drug scene (nothing compared to the drug scene now). Or maybe just a good upbringing and common sense. I always felt I had to know about what time it was. No losing track of consciousness.

At any rate, insulin pens and the insulin pump have changed and lessened the pain of taking insulin these days. The pump and glucose monitors are not yet, though, totally automatic. The diabetic child/teen or a parent still has to be on top of blood sugar levels, dosages, diet and the like. Believe it or not, a phone app is now helping!

Until the continuous glucose monitors can become 100 percent effective, public blood testing using the finger or arm seems to be more the subject of controversy. And these days, lows not highs are the concern. Most schools have now been effectively prevailed upon to let children blood test right in class, say if they are feeling low and/or if they feel the need to make sure they’re all right before a test. Of course, this was never even a possibility for me when growing up, not that I would have consented to do so really.

Besides the fact that I did not want to be stared at as a diabetic while growing up, I think it’s my Southern upbringing—who would test their blood sugar in front of others sitting down to eat? No, doesn’t sound appetizing—of course, I would never deny someone the right. Still—after ordering at a restaurant, what’s wrong with excusing one’s self to the restroom? If you use an insulin pump at the table, most just think you’re looking at a phone if they even notice. Not that people didn’t or don’t know I’m a diabetic

These days, if in a crowd of busy people, I do perhaps just turn away on an airport bench to test my blood—still, as I was involved professionally in a more business-like atmosphere, hard to imagine the business lunch, sales meeting, work meeting in which I would have thought it socially acceptable to squeeze blood from my finger. Actually, the reason I’m for diabetic awareness is that a cure or more effective methods of treatment seem so close.

Life could be so much easier for the kids coming up. Many are intrigued by the idea of “smart insulin.” This is a dosage that would have to be taken in the morning each day—and then supposedly, the insulin reacts chemically with various levels of glucose throughout the day automatically. We’re back to one shot a day! Not sure about the blood testing.

My favorite so far is the discovery/manufacture of beta cells by Harvard professors. This is touted as a cure, though actually it seems to be simply a very much improved treatment of T1D. The encapsulated beta cells are in some sort of bandaid-size implement that can be inserted into the backside of the diabetic every two-three years, and these cells then work much the same way as the cells within a normal pancreas. Again, not sure how the glucose testing would still go, but seems like it would eliminate the needs of injections and the like?

The reason to be involved in diabetic awareness now is that there is hope. Actual hope that healthcare can not only keep a child alive, but the very real idea that healthcare—rather than leading to only more healthcare—will one day actually be able to provide cures for various diseases, diabetes among them. Yes, if one tests positive for the possibility of developing T1D these days (remember all those tales of inherited tendencies)—tests are now being run on possible vaccines. Could the ravages of that virus have been stopped in my once supposedly pre-disposed body? Maybe now, or maybe soon!

I have survived a lifetime with T1D by not letting myself even consider life another way. Yes, best to live and make the best of what I had, not pine for a future that could not be mine. I still don’t pine really—I’m 65 years old, and I find a way to do what I need or want to do (now that the need for health insurance no longer binds me). I do now, however, seek to touch the future—for the younger people, could not life be made better, more affordable, less of a burden or a pain to the body? That’s what I think diabetic awareness can lead us to: touching the future.

All together now, no resigning ourselves. Healthcare is good, but how about freedom from such involved healthcare on a daily basis or how about a cure? Let’s touch the future.

Keep on Marching

cindat 1 Comment

JDRF T1D One Walk, 2015

Last Sunday, October 4, dawned cold and windy. Gray. It matched up with what I remember at the time of my diagnosis at age 11. I was diagnosed in January, and so of course, it was colder than last Saturday. Still, I remember the gray, and no, I’m not a fan of winter.

Last Sunday was different, though, in that the air was filled with exuberant children and teens, and yes, adults like me. The air was full of hope. I even made it through the 3-mile walk, thanks to partner Karen Zichterman, and the little boys and girls who kept running ahead of us shouting, “Keep walking! Keep walking.”

Type 1, these days, seems so near that cure—or at least very improved methods of treatment. Easier and more effective methods:
• the artificial pancreas (a system of external devices plus a phone app),
• “smart” insulin (the new drug actually can regulate itself to the sugar in the bloodstream),
• the encapsulation of insulin-producing beta cells (eliminating the need for transplant drugs),
• prevention and a further biological cure.

In the “old days,” the insulin syringes were made of glass. I kept mine in a glass jar filled with alcohol. The needles had to be screwed onto the syringe, and the needles were blunt by today’s standards. Insulin was made of beef or pork extract and it had to be refrigerated. I could not attend a single slumber party without toting along an embarrassing load of paraphernalia. The glass syringe clanged inside its bottle as I walked into each and every front door, or I always imagined it did. For the rest of my painful adolescence, self-consciousness became a constant state of mind.

I took a shot once a day, often without too much thought at all, for more than twenty years. Then there were new medical findings, and a new doctor in a new town talked to me about taking two shots a day for better control. I nodded my agreement, then left the office and did not go back. (I’ve heard that many diabetics have had similar reactions.) After twenty years—by then I’d had a minimum of seven to eight thousand shots—why shrink from a few more? Why such a fuss? Because to me, the suggestion added only “insult to injury”–the injury that has been done to the body, and therefore, the soul of the diabetic. A humiliation of the flesh.

Furthermore, the blood tests of the old days were even more of an ordeal for this child. Doctors insisted I have a blood test at least once a month, and I dreaded them as I have dreaded little since. The tests entailed only what we think of today as a simple and ordinary blood test. At any rate, the blood tests back then also necessitated a visit to the lab at the local hospital, meaning my poor mother had to drag me out of bed very early in the morning on the designated Friday for my blood sugar test.

In my mind, the drive to the hospital always takes place in winter. My mother and I ride through streets lined with bare trees under skies of gray cold to pull into the parking lot behind the emergency room. The hospital corridor is narrow, dingy, filled with garish light, and I feel as if I can hear the clock on the wall though its ticks are not audible. My mother and I sit and wait, and wait, and what I do hear is the clatter of needles and test tubes inside the lab, as well as the most hated sound–one I can pick out to this day—the snap of rubber tubing.

The problem was, is, and will continue to be that I have no good veins. I did have one vein that sometimes worked in my right arm, and my favorite tech seemed to have the most luck in “hitting it.” However, if “old faithful” just didn’t seem to be pumping a blood sugar day—the ordeal that followed could only be called a fishing expedition through the flesh of a child with a very long needle.

Not so with the children of today. Blood glucose meters for the fingers, continuous glucose monitors, and the insulin pump have made all the difference. Research has helped. Of course, I took several years to get on the pump—such was my distrust of medical personnel and pharmaceutical companies. In the days of my introduction to the pump, I tried not to be shocked at the size of the needle I had to use to get the miniscule tubing into my stomach, the insulin into my system. Not to mention, the purple bruising shocked even me, the old-hand.

Yes, I think all diabetics want “less sticking” please. I am a huge fan of the pump as my health has improved and I feel so much better. Yet I know many who don’t choose to wear a continuous glucose monitor, in addition to the pump, due to the fact that its use still means another device that must be inserted into and worn on the body. The reason I say I “walk for the kids” is so that one day less invasive methods can be found, methods that will not discourage adolescents and young adults from taking care of themselves. I favor methods such as the “smart insulin” or the encapsulated beta cells that can be fit into the body perhaps as little as every 2-3 years.

However, I’ve also realized, I walk for “the parents.” One of the most touching remarks I heard at the walk was from parents who admitted to having not slept for a whole night since the diagnosis of their child five years ago. Yes, everyone is afraid of that low at night that can signal danger for the sleeping child.

Right after my diagnosis, I’d avoid bedtime as long as I could. I did not want to lie on my bed and stare at the ceiling night after night. I can still remember the white squares of my bedroom ceiling as I’d count them over and over, one by one. I had trouble sleeping. My family lived on Main Street in our small town, U.S.A., and so I also listened for the soothing sound of the passing cars. As their lights lazily swept the ceiling, I’d pray to fall asleep. This was how I became twelve years old.

Of course, in the days when diabetics took just one shot daily, perhaps my insomnia was a result of high blood sugars—who knew back then? I did often awake during the night with the feeling of low blood sugar, and this became the terror. What if one night I didn’t wake up? Today, as insulin is so much more effective, and yet so many now fail to feel those lows coming on—of course parents are beside themselves over their child’s safety even while home in bed!

Too much fear, and yet the younger ones are so full of hope that they fill me with it. Doing well on their pumps, they are confident, as I wish I had been. As to the continued problems, I’d like researchers to keep working and to echo the children running ahead: Keep walking! Keep walking!

Contribute to JDRF One Walk

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Cinda Thompson, of Peoria, has had Type 1 Diabetes for 53 years and counting. On October 4, 2015, she will be among thousands of walkers at the Juvenile Diabetes Research Foundation One Walk, Sun., Oct 4 (10:00 AM), Civic Plaza Park Levee District, 400 Richland Street, East Peoria., IL 61611.

She is part of the Z Team, along with Karen Zichterman of Chillicothe, whose son was also diagnosed with adult onset juvenile diabetes (Type 1), an immune system disorder. The local JDRF has contributed thousands of dollars to eliminate this difficult, life-burdening disease. Nationally, JDRF has contributed over $1.9B to T1 research, $98M in 2014: Type One to Type None.

Cinda was diagnosed in what she calls “the dark ages” of treatment of one shot of long-acting insulin per day, along with a diet of no sugar. Blood sugar testing as it exists today was not possible, and though high blood sugars were feared, Cinda assures that low blood sugars were and are feared perhaps even more by those who suffer from Type One.

The Juvenile Diabetes Research Foundation, counting many parents and children among its members, is very much responsible for helping to fund further help. Cinda has been awarded with the Joslin Research Center’s 50-Year Medal, as well as that of Eli Lilly, original company founders of insulin. She is happy to speak with any individual group or organization concerned with facing a long-term illness. Meanwhile, Cinda attributes modern medical advances like faster-acting insulins and the insulin pump, as well as more frequent blood testing, with improvements in her health and outlook.

Every contribution to: (http://www2.jdrf.org/site/TR?fr_id=5351&pg=team&team_id=179756&ref_px=9938709) is working on:
• the artificial pancreas (a system of external devices plus a phone app)
• “smart” insulin (the new drug actually can regulate itself to the sugar in the bloodstream),
• the encapsulation of insulin-producing beta cells (eliminating the need for transplant drugs),
• prevention and a further biological cure.

Any medical advancement can better the life of many a child and their worried families. Cinda has come to believe an actual cure might be possible. As grateful as this one woman is for her life, she does not want anyone else to have to suffer isolation, confusion, disillusionment, or even the financial challenges her condition has presented her throughout the years. This is why Cinda, the Zichtermans, and so many support JDRF—these people are involved with hope. A cure is possible. Type One to Type None!

Cinda Thompson