In the shelter of hope

Also posted on Lifeonthecutoff

Lifeonthecutoff's Blog

DSCN6784Have you noticed the snow drifting across my words?  It’s a Currier and Ives sort of feature that the happiness folks at WordPress provide; no shoveling needed.

We have, thus far, been spared any real accumulation snow here on the Cutoff and the sun is out today, smiling down upon us as we finish the last morsels of Thanksgiving (today it is turkey vegetable soup).  The last of fall is being swept under the carpets and the beginning of Christmas is starting to show.

I know some of you put up Christmas in one, fell swoop and your lights are already brightly shining. For some, it may take a while; perhaps just a sprig of green to honor the changing season. For my friends “down under”, summer has arrived, and for many I love, Hanukkah with its glowing candles will soon be here. Perhaps you do not celebrate the holidays or holy…

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Lord of the Flies

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LordOfTheFliesBookCoverTom still has it; the stamina, the fortitude, the razor-sharp aim. Even with altered vision and fingers scarred from thousands of blood inducing needle pricks, Tom still has it. He can still take down a common house fly with laser precision using nothing more than a rubber band.

Tom IS the Lord of the Flies.

It has been far too long since our last post here. Life and time just got in the way, but, I did want to let you all know how things are going with Tom since his eye surgery this past December.

He is doing well. His right eye has healed. He is working hard, both designing at the computer and in the office, and physically, building things, repairing the riding mower, hauling tree limbs, chasing grandchildren, and forever digging holes for me to plant in.  Tom soldiers on.

While the surgery went well, Tom’s vision has not improved as we had hoped. The macular edema remains a challenge as it still “thinks” the epiretinal membrane, peeled away during the surgery, is still in place. In an effort to retrain the macula, shots continue to be injected into the eye by the retinal specialist. The good news is that the length of time between shots has lengthened, giving us hope.

In-the-meantime, Sir Thomas is still the Lord of the Flies!

Olympian

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manskiingmainA short post, this day, dear reader. I just wanted to bring to the forefront a 2014 U.S.A. Olympian, who fits into our mission here on Brittle.

It is heartwarming to know that there are so many young men and women  pursuing their Olympic dreams, especially while controlling Type I Diabetes.

Kris Freeman is one such person. A gifted and accomplished cross country skier, he has quite literally experienced the ups and downs of skiing while treading that delicate balance of blood sugar levels. He has become a hero to so many children by speaking openly of his condition – as well as a hero to a not-so-young couple who live in a place called the Cutoff.

Thank you, Kris Freeman, for your athleticism and your courage.

Image and article here.

Article on Kris Freeman here.

The Importance of Eye Exams

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When originally diagnosed with diabetes in the mid-1960’s, Tom was put on an oral medication, told not to exercise, and DSCN3924to see an eye doctor if he had any vision problems. The active 16-year-old basketball player paid the doctor no heed and continued to shoot the hoops on his high school team, run track, play football. He went on to college, where he was finally put on insulin injections. He kept active, ate as well as one could on cafeteria food, and acquired a new doctor for the duration of his college years. Dr. Stevenson steered him on a better course of care, which we wrote about here and here.

When we married in 1973, Tom started seeing my internist, Dr. K, who encouraged Tom to stay active, continue his dietary regime, and to come in for yearly check-ups. Dr. K was the first doctor to acknowledge that Tom was a “brittle” diabetic, a term neither of us had heard before, but, one that explained the extreme ups and downs of sugar levels, which came, still do, for no apparent reason.  Dr. K wrote a letter for Tom to carry explaining his possession of hypodermic needles when we flew to the Bahamas in 1975. We were more concerned about flying over the Bermuda Triangle than the needles he carried. Times have certainly changed since then. Tom still has that letter, though he is now on an insulin pump and carries all sorts of supplies and extra food in a backpack when flying.

Dr. K was a remarkable internist, diagnostician, and human being. It was Dr. K who sent Tom to an infectious disease doctor and a plastic surgeon for a foot ulcer, the first of many trials brought about by diabetic neuropathy, in the mid 1980’s.

On Christmas Day in the morning, 1987, Dr. K responded to an urgent call from Tom when he awoke unable to see out of his left eye. Tom knew then that something very serious had occurred. Dr. K recommended a young ophthalmologist, Dr. P, who said that Tom had the worst case of proliferative diabetic retinopathy he had ever seen, and so began Tom’s first journey in dealing with vision problems caused by diabetes, and the first time he was referred to an ophthalmologist.

Early diagnosis by an ophthalmologist would have likely diagnosed this condition sooner, although even with a thorough exam, the hidden intricacies of diabetes and vision can appear suddenly, especially in a brittle diabetic. Today, one could also be referred to a vitreo-retinal specialist.

If you know a diabetic or are one, we encourage you, no, we insist that you visit an eye specialist at least one a year. Penny

Grasping gratitude

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DSCN3730As we spooned the last of the broth from our steaming mugs of chicken soup, Tom and I reflected on our day. We don’t often sit in the ground level family room for our meals, especially when eating hot soup. Tuesday, however, was an extraordinary day that necessitated this. There Tom sat, on the couch,  with me perched precariously on the edge of the recliner nearby, the coffee table pulled close, and a candle glowing atop a Christmas tea cloth.

Ten hours earlier, Tom was draped from head to foot, in an operating theater, with only his right eye exposed. After more than two years of treatment for several eye issues related to proliferative diabetic retinopathy, and a postponement for surgery when it was discovered he had major blockages of two arteries, Tom finally underwent the delicate eye surgery to remove an epiretinal membrane, brought about by long-term diabetes, and a vitrectomy, in which the vitreous was removed from his eye, laser treatment was done to the retina, and an air bubble was implanted to keep the retina in place. By 10 am, we were home, a patch on Tom’s eye and instructions to lay at a 95° angle, sitting up only to eat.

We ate, then we talked about gratitude; for good doctors and nurses and hospitals and for the ever-moving landscape of modern medicine and technology that continues to advance in directions undreamed of a few decades ago. We talked about how fearful we had been for this surgery and recalled the vitrectomy Tom endured more than twenty years ago, spending the night in the hospital, on his back for weeks, and the pain he experienced. Advanced technology and equipment now allows doctors to perform eye operations with more and more exactitude. Newer drugs allow for patients to be sedated, rather than completely anesthetized, making for quicker recoveries, especially for the diabetic patient.

We marveled at doctors who are not only experts in their specialties, but who are more aware and respectful of the patient as a whole being. Tom was able to wear his insulin pump the entire time of the surgery. At his endocrinologist’s coaching, he was able to adjust insulin for the pre-op time he would not be able to eat and for the surgery. Tom controlled this, as well as checking his blood sugar, except for the hour of surgery. His wonderful retinal specialist, as well as the anesthesiologist, endocrinologist and the cardiologist worked in tandem to ensure the best possible medical scenario.

We spoke of hope; for Tom and a future where we will not know for many months what vision he will have in his eye, though certain that without the surgery there was no hope. Tom spoke of hope for all the children who have Type I diabetes, and for their parents’ hope as well. These children will have an easier row to hoe as they grow to adulthood, careers, families and a life much improved in the treatment of this insidious disease.

As we finished our simple supper, reflecting, it was all as if the steam from the nourishing, hot soup was grasping our gratitude, marvel, and hope, in spite of a brittle situation, and carrying it upwards like the anticipatory candle of this Advent season.

Housekeeping

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DSCN3342We meant to post sooner, but, life has managed to get in the way, and we find we need to do a bit of blogging housekeeping.

Thank you for reading Brittle. Thank you for commenting. We are finding that we may not be able to respond to everyone, at least for right now, hope you understand and that you know that your thoughts and words are appreciated. However, if you have a particular or pressing thought or concern about diabetes, DO feel free to ask. We will get back to you as soon as we can. We both love to hear from you all.

Our first posts were about our early days dealing separately, and as a couple, with JD. We hope to do more of that. We spoke of Tom’s early experiences with insulin reactions and how Dr. Stevenson got him on track in the early years. There have been other doctors along the way which we hope to bring to light, and there are doctors right now who care for Tom.

In the early years, there were no glucose monitors (glucometers), nor were there insulin pumps. It was a guessing game, at best, to where Tom’s sugar levels were the first 15 or so years into his condition. It made living with Type I diabetes even more of a challenge. It also set the stage for diabetic related conditions; neuropathy, retinopathy, circulatory issues, foot ulcers, etc.

Tom has been dealing with a serious visual problem in his right eye for several years. Treatment, in the form of shots in the eye, kept the condition initially at bay, but have brought on several eye infections, one of which was dire a little more than a month ago. We are currently preparing for a delicate surgery in a few weeks. Tom will need a vitrectomy with a peel of an epiretinal membrane. It is complicated. Recovery will be slow, Doctor visits long and often. We are hopeful. Our energy levels just aren’t where they need to be to write at the moment.

Until that level returns, I thought you might like to read a post I did several years ago when Ron Santo, a Chicago icon, passed away. There is a connection to Tom, and you can read it by clicking on here.

We’ll be posting again soon. Penny

Gumdrops and butterscotch

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300px-Chuckles-Wrapper-SmallWe were in Tom’s 1966 screaming yellow Corvair, heading down the interstate on the outskirts of Normal. Everything was normal – then, it wasn’t. The car suddenly swerved. Tom said he thought he was having an insulin reaction. I tried to remain calm, though I was frightened. This was a new experience for me. I knew, however, that he was more frightened than I was. He managed to shift gears and pull over to the shoulder. I asked if had candy. He did, he said, and started tugging at coat pockets in search of sugar.

Just weeks before, Dr. Stevenson encouraged Tom to carry gumdrops with him in case he had an insulin reaction. It was the first time anyone in the medical profession ever suggested this, and it seemed, on the surface, counterintuitive to managing diabetes. This was 1970. A reaction’s “reaction” was typically a glass of orange juice. It still is today. While orange juice can effectively reverse low blood sugars, a diabetic reaction can come on suddenly, especially in brittle diabetics, and a glass of orange juice is not always close at hand.

220px-Butterscotch-CandiesFortunately, that afternoon, Tom had some hard candy, butterscotch, on him. I opened the wrappers as fast as I could as he ravenously chewed and swallowed them. Slowly, he felt better, pulled onto the pavement, and the emergency passed.

We were both shaken by the incident. Tom had already experienced several insulin reactions, particularly the one that put him in the hospital and brought Dr. Stevenson into his life, and it was, still is, a life-threatening emergency. This was more than a dozen years before glucose monitors were everyday equipment in a diabetic’s life, and even more years before the insulin pump would be administering insulin to most diabetics instead of a hypodermic needle.

On the lighter side, after Dr. Stevenson talked to Tom, Tom asked me if I knew what gumdrops were. All I could think of was the vision of sugarplums dancing through heads on Christmas Eve. We scoured the local IGA, K-Mart, and drugstores, with nary a gumdrop in sight. Tom settled on Brach’s butterscotch, which were easy to carry, fit into pockets, and were individually wrapped in plastic. It was only after Tom asked his mother in a phone call (imagine that, phone calls) if she knew what gumdrops were that he learned they were pieces of jelly like candy coated with sugar, like Chuckles. Both inhabited kitchen cabinets over the years, congregated in Tom’s pockets, my purses, backpacks and fanny packs, the glove compartment of the car . . . and I can’t begin to tell you how many butterscotch were laundered.

I don’t know what would have happened that day in the car, in speeding traffic, if Dr. Stevenson had not told Tom to carry gum drops. I’m just glad he did. Orange slices and butterscotch would be regular lifesavers for many years to come.

Where am I?

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“Son, you’re not doing very well” were the first words I heard when regaining consciousness.   I was looking up into the bright lights, not quite sure of where I was or how I got there.  After a barrage of questions from different orbiting bodies in what must have been an emergency room, I saw his kind face.  There he was, upside down in my view as he said “you need to have a doctor here while you’re in school.”  He went on to explain that he wasn’t taking on any more patients, but he would agree to take me on if I would follow his instructions to the letter.   With my mind still foggy and a pounding headache, I would agree with anyone who offered to help me feel better.  What a stroke of luck, or more likely, divine intervention that chance meeting happened to be.  I’m quite sure I didn’t make the best of first impressions on this kindly older gentleman who would become my first guide on this long road.  Actually, as I like to say, I was off the road and into the weeds!

The doctor began sharing his plans to get me where I needed to be, discussing the situation with me and my parents, who seemed to suddenly appear in the room from a hundred miles away. It was like a scene out of  Star Trek and Scotty had just beamed them downstate!   My girlfriend, who you all know well now as my wife, Penny, was there too.  She also orbited into my life and has always been there for me!  Everyone seemed to like my new doctor and I knew I was in good hands.  I was where I needed to be.

As the weeks and months went by, we came to learn a lot about each other, my new Doc and I.  As I adopted my newly learned disciplines into my daily routine, things became less about formal instructions, and more about life.   He mentioned in one such meeting that he had a son that was on TV.  I thought that was pretty cool, but I had never heard of him at that point, so I wasn’t real impressed.  As a college sophomore in a dorm, there weren’t many opportunities to sit down and watch prime time television.  Today, everyone would have a 40” flat screen as a minimum survival instrument.  It wouldn’t be until later, when a new show started, that I saw his son for the first time.  Shortly after that I would tell everyone, “hey did you see MASH last night?”  “Well McLean Stevenson’s dad is my doctor!”  “No, he really is….really….just ask Penny!”  And so he was.   He was a great doctor and a gentle soul that lead with a firm hand, but was never judgmental.  He knew this was a difficult disease to handle and sometimes things go wrong even when you do everything by the book.  In fact, there really is no owner’s manual since everyone is a unique model.

I remember going to see him, along with Penny, before graduation and knowing I would miss him and his gentle encouragement.   He started me on the right path of taking charge of a condition that would be all too happy to be in charge of me if I let it.  Thank you, Dr. Stevenson, for hovering over me that day and offering to airlift me out of the mess I was in.  The war against diabetes had a brave new soldier thanks to the heroics of chopper pilots like you.

MASH

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250px-M*A*S*H_TV_title_screenThe telephone rang one afternoon in that once-upon-time before cell phones or answering machines. It was my boyfriend, Tom, calling from the hospital in the college town of Normal. He was okay, he said, but in the hospital. He and a friend had been shopping at a store in the small downtown area near campus. One moment, he was looking at something on a shelf, the next, he awoke in the hospital emergency room, having gained the prestige of being the first person to be transported in the town’s shiny new ambulance. A doctor was looming over him when he finally opened his eyes. Tom may tell you this part of the story at some point,  but, I will interject here that there was an interesting connection to MASH,  the television series popular at the time, and the man who suddenly became Tom’s doctor.

When Tom first went on insulin in 1969, a glucose monitor was an unheard of device for monitoring one’s blood sugar levels. A urine strip could give a reading of sorts, but, not one that was accurately up-to-the-minute. It would be more than twenty years before such a medical device would come into life, bringing far greater control of his condition. (I have high praises for the space program from which so many medical advancements have emerged from.)

Insulin reactions, aka low blood sugar, are serious medical matters that can render a Type I diabetic unconscious – or dead. To complicate things, at this point, a diabetic’s breath can take on the smell of alcohol and their behavior may become erratic with slurred speech and confusion. Diabetics suffering insulin reactions were often left lying in the street, or hauled off to jail to “sleep it off”, only to be found dead later. In fact, they still are.

It is, dear reader, a brittle condition. For some, like Tom, experiencing low blood sugars can come out of the blue, no matter what foods were ingested, whether idle or active, asleep or awake. Type I diabetics carry candy, glucose tables, and extra food with them these days to counter insulin reactions. Circa 1970, this wasn’t always the case. In the ’70s, a young man,  arms flailing and erratic, taking down store shelves while collapsing, would easily be mistaken for a drug user. Fortunately, Tom’s friend knew his sudden behavior had something to do with diabetes and called for help.

I dropped whatever it was I was doing when Tom called, hopped into my 1963 Gold Dodge Dart, clattered over the wooden bridge and into the Normal hospital to see him, now in a hospital room, where he remained for several days as a new protocol was begun in controlling his condition, one of the first steps on a long journey of diabetes management. His parents hurried down. His mom went out to get a medical tag, which Tom wears to this day. Gum drops and butterscotch were suddenly nestled into pockets, and became the fodder for other stories along the way, as a young man jumped another hurdle in what he himself calls a high maintenance sport.

If I can draw one moral out of this, it would be to not judge a person you know to have diabetes, especially Type I, if he or she is suddenly slurping a Coke or chomping on a donut as if it was the Last Supper. Try not to say “should you be eating that?”. Instead, a simple “how are you?” would be appropriate. They may, actually, need your help – and I promise you, at this point, they do not need a lecture on why they shouldn’t be eating something sweet, their own MASH unit dangling from their hip pocket.