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s 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 18 wednesday dec 2013 posted by lifeonthecutoff in diabetic retinopathy eye problems from diabetes type i diabetes juvenile diabetes 10 comments tags air bubble during and after eye surgery diabetic retinopathy epiretinal membrane epiretinal peel vitrectomy as 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 06 wednesday nov 2013 posted by lifeonthecutoff in diabetic retinopathy eye problems from diabetes type i diabetes juvenile diabetes 6 comments tags diabetic retinopathy epiretinal membrane epiretinal peel ron santo vitrectomy we 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 22 tuesday oct 2013 posted by lifeonthecutoff in insulin reactions low blood sugars type i diabetes juvenile diabetes 6 comments tags brach s butterscotch candy chuckles gumdrops insulin reactions responding to low blood sugars responding to insulin reactions we 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 fortunately 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 15 tuesday oct 2013 posted by lifeonthecutoff in type i diabetes juvenile diabetes 19 comments tags coping with diabetes insulin reactions low blood sugar managing diabetes mash mobile army surgical hospital scotty from star trek 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 14 monday oct 2013 posted by lifeonthecutoff in type i diabetes juvenile diabetes 11 comments tags controlling blood sugars insulin monitors juvenile diabetes living with type i diabetes low blood sugar mash the 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 g...