(At Work - May, 2008)
My Diabetes Story
Mark Mealey, Knoxville, TN
I’ve been following a Low-carbohydrate diet since 2003. I follow a strict diet that consists of approximately 75% percent fat, 20% protein and 5% carbohydrate (I consume less than 30g of carbohydrate a day). It is hard for friends, coworkers and even my family to completely rap their heads around the diet I am on. I hear a lot of “I don’t know how you do it”, or “you have amazing will-power.” In reality the diet is easy for me. The meticulous attention to my diabetes is the tough part. But the benefits are well worth the effort. No matter what I did it was impossible for me to control my blood sugar on the ADA diet; the Low-carb diet I follow makes it possible. One of my favorite quotes of Dr. Bernstein’s from his book Diabetes Solution sums up how and why I do this: “My mouth waters whenever I pass a bakery shop and sniff the aroma of fresh bread, but I am also grateful simply to be alive and sniffing.”
I have been Type 1 Diabetic (Juvenile Diabetic, Insulin Dependent Diabetic) for 37+ years. I was diagnosed in September 1974 at 10 years old. I am currently 47. In the summer of 1974 I started losing weight and I developed an insatiable thirst. It is hard to explain how unbelievably unquenchable this thirst was. I was drinking gallons of what ever fluid (mostly water) I could get my hands on. I was constantly (as in every 15-20 minutes) drinking and peeing huge amounts; my bladder would fill up that fast. For awhile I would get up several times a night to use the bathroom and to drink water out of the faucet; I literally could not get enough. Eventually I became so exhausted that I wouldn’t wake up to use the bathroom and for several weeks I wet my bed (often several times a night). I never told my parents this was going on because I felt ashamed. I would sleep with a towel under me and I would hide my soiled cloths and sheets under the bed and in my closet. Eventually my Mom found the soiled cloths and sheets in my closet. I “confessed” that I had been wetting the bed. My Mom took me to our family doctor and he quickly suspected diabetes as there was sugar in my urine. To be sure he took blood to get analyzed. In those day’s blood had to be sent off to a lab to get tested. A few days later we got a call advising to get me to the hospital ASAP. Fortunately, my diabetes was diagnosed before I suffered Diabetic Ketoacidosis. I spent a week in the hospital. I leaned that I would need to take insulin injections for the rest of my life. I was taught how to give myself an injection, how to test my urine for sugar and ketones, and what I was expected to eat. I also learned what a low blood sugar felt like and how to remedy it. My family was also taught these things. I did not know what “Type” of Diabetic I was when I was diagnosed; they just told me I was a Diabetic. It was years later in college when I did a research paper on Diabetes that I realized that there were different types.
When I was diagnosed in 1974 diabetes treatment had progressed somewhat since the first availably of insulin for the treatment of diabetes in the early 1920s, but was still very crude compared to today. Although highly purified animal insulins were available, the next improvement in insulin for diabetic treatment, Biosynthetic Human insulins (Recombinant DNA), did not occur until 1982, about a year after blood glucose meters first became available to the public in 1981. At least 4 time a day I used Clinitest tablets in a glass test tube to test for sugar in my urine. As I recall, this only gave 5 possible results; negative(0), +1, +2 , +3 or +4, that in no way indicated the current blood sugar level. At the same time I did a separate test for ketones in my urine. I did use disposable syringes, but they were nowhere near the micro-gage short needles that are available today. I was urged to keep hard candies in my pocket at all times. To help avoid low blood sugar I was required, even when not hungry, to eat between meal snacks at mid morning, mid afternoon and before bed and skipping any meal was strictly forbidden. Diabetes treatment had two main goals back in the day when only urine testing was available: 1) avoid low blood sugars and 2) avoid diabetic ketoacidosis. That was a pretty wide range to shoot for. I’ve never experienced diabetic ketoacidosis in my 37+ years of having diabetes, but low blood sugars were a recurring problem. At that time there was no HbA1c goal to reach. The test was not available until around 1979. It took many more years for widespread development and adoption of goals for HbA1c and blood glucose levels as the results of the Diabetes Control and Complications Trial (DCCT), which showed there was a direct correlation between keeping blood sugar levels as close to normal as possible and progression of diabetes complications, did not come out until 1993.
After diagnosis I was on one injection per day of NPH insulin. I went through a “honeymoon period” a few months after diagnoses. My insulin requirements went down to 1 unit NPH per day, until one day the doctor told my mother to stop giving me the injection to see what happened. This lasted one day. My sugar skyrocketed (to what, we will never know). I remember feeling very sick and my legs felt like lead weights. That was the end of the honeymoon and my insulin requirements went up steadily after that. My insulin regiment changed many times through the years. I remember I went to 2 injections a day sometime after my first year with diabetes. I remember having to mix R (Regular insulin) and NPH in the morning and taking NPH at night. I went on multiple daily injections (MDI) in 1995 and on an insulin pump in July of 2003. The insulin pump experience lasted just 18 months and I “happily” went back to multiply daily injections in January 2005.
When I was younger the doctor always told us what insulin doses I should take after analyzing the chart of 0’s, +1’s, etc. What is funny, or not so funny, is that I made up most of those entries on my chart. After 2 or 3 years of peeing in a cup and putting 5 drops of urine, 10 drops of water and that god awful tablet into a test tube, watching it bubble, smelling it burn, and waiting in anticipation for what color it would turn into, (hoping for blue, but usually seeing the ugly mud colored brown) I got tired of it. In the first year I saw mostly blue (Negative for sugar). As time went on I saw hardly any blues and a lot of browns. I got discouraged, so I stopped testing. What is so ironic is that I did the same thing as an adult. Even after blood meters came out, I was so discouraged by the numbers I was seeing that I just stopped testing and went on how I “felt.” I used this method for many years.
My parents got me the first home blood meter to come out back in the summer of 1982. It was the Ames GLUCOMETER. It must have cost them an arm and a leg. This was the summer before my freshman year in college. I tested all that summer. I saw numbers from 40 to almost 500 to numbers that did not even register. I never knew what my numbers should be. I just knew that they were bouncing all over the place, and as with the urine testing I got discouraged and stopped testing. When I got to college the meter stayed in the closet, as did my diabetes.
I hid my diabetes from everyone. College is when the denial phase of my life with diabetes really took hold, and lasted in one form or another up until early 2003. I started to party a lot, I ate whatever I wanted, I started smoking. I was feeling free. My diabetes, and my health, took a back seat to having fun. I was not feeling the damage that I was ultimately doing to my body. I “felt” good. I did not live for the future, I lived for the moment. The thought of complications rarely crossed my mind. I had convinced myself that complications were not going to happen to me. I rationalized that complications happened to those that didn’t take their insulin every day. I took my shots every day at about the time I was supposed to. Other than that I acted like a person without diabetes. I even hid my diabetes from my fraternity brothers. They never would have known until one morning during the last semester of my senior year I went into a seizure from extremely low blood sugar. My roommate had no idea what was going on. He called my girlfriend. She had to tell him I was a diabetic and to call an ambulance. My girlfriend helped me hide my secret for over three years. She understood that I was very self-conscious about it and only pushed the issue on a few occasions. Well after they hauled me out of the fraternity house on a stretcher the cat was out of the bag. I was kind of relieved in a way. For me it was easier for them to find out this way than for me to have to tell them. Up until 2003 I always left it up to someone else to inform people that I had diabetes. I did not mind people knowing about it so much, I just never had the self confidence about my diabetes to come out and say it, let alone talk in any detail about it.
After I graduated college in 1988 my life settled down some. In 1995 I went on MDI (which for me was R at meals and NPH morning and night). My HbA1c's ranged between 8 and 10 from 1995-1999. I got married in 1999. Soon after we found out my wife was expecting, in February 2000, I started seriously thinking about my health and about diabetic complications. I started to go to my family doctor on a regular basis for treatment of my diabetes. He changed my meal insulin to Humalog. For the first time I started really trying to gain tighter control. This caused many more low blood sugars and overall greater swings. I kept my HbA1c's consistently between 7.1 and 7.5, but for over 3 years I was on a roller coaster of highs and a lot of lows. I kept telling my wife that this was normal for diabetics, and that I was going to have lows from trying to keep tight control. I was still very introverted about my diabetes. I avoided conversations about it even with my family. I told everyone I was fine. Even my wife did not know how I was truly feeling. This finally caught up with me in January 2003. I was watching my two year old son when a low sugar hit that I did not feel coming on. I was on the floor out of it for a couple hours before my wife came home and found me in a seizure. Luckily, my son did not hurt himself for the few hours he was left unsupervised, but my wife and I knew that we were very fortunate.
Low blood sugar is a very serious and even life threatening condition. It is physically and emotionally very tough not only for the diabetic, but also for the loved ones that are in most cases the “first responders.” I have suffered from many, many major low blood sugar attacks in my years of having diabetes. I have suffered dozens of seizures where I have lost consciousness and gone into convulsions. I have suffered from dozens of serious low blood sugars where I could not speak fluent words and had no control of my extremities (they would literarily just flop when I attempted to move them). I’ve been taken to the hospital by ambulance on numerous occasions from low blood sugar. I’ve woken up during the night, more times than I can count, drenched in sweat (and I mean drenched from head to toe-with cloths, pillow, sheets, comforter and mattress sopping wet) from night time low blood sugars. Low blood sugars put my Mom through Hell in the years I was growing up. Even less serious low blood sugar can have a devastating effect. I have been combative and verbally abusive to loved ones and friends trying to help me remedy a low blood sugar. Low blood sugars can be a major point of contention in any relationship. I’ve lost girl friends, and I don’t blame them, because of low blood sugars. Coming out of a low blood sugar can be a very emotional experience for a diabetic. I’ve been hit hard emotionally, to the point of crying like a baby, when coming out of a low blood sugar because of the utter sense of failure it made me feel. The overwhelming experience of numerous and sometimes extremely serious low blood sugar attacks is ultimately what led me to finding another way…
Up until this point I was controlling my diet and insulin regime pretty much on my own. My family doctor prescribed my meds and did blood work on me 4 times a year. He wanted me to get my HbA1c's at or below 7, but other than that he was happy with what I was doing. After the emergency room visit I had him refer me to an endocrinologist. I was tired of the roller coaster ride and especially tired of the hypo's that were draining me and my family. It took a month before my first visit to my new endocrinologist. Boy what an eye opener. There were so many things I did not know about. After I got married I didn’t avoided my diabetes; I was diligent about taking my medications, trying to eat right, checking my sugars, etc. However, through lack of knowledge (i.e.- at that time I did not know what a carbohydrate was, among so many other things), and habitual denial, I was treating this disease totally wrong and ineffectively.
My new Nurse Practitioner had me describe any and all problems I was having. I decided to let it all hang out and went through most everything with her:
- Could not control blood sugar, I was having multiple hypo’s daily.
- Lack of energy. I rated my energy level 2-3 on a scale of 1-10.
- Was going to bed at 10PM and had trouble getting out of bed by 7AM.
- Did not have a good night’s sleep in years, I constantly tossed and turned and could never get comfortable.
- Constantly yawned throughout the day.
- Constant bloated feeling, always felt full.
- Occasional chest pains.
- Left thigh pain that went up into my buttocks when sitting, and while sleeping.
- Limited motion and severe pain in my left shoulder.
- Constant gas.
- Bowl movements always left me feeling less than satisfied, like I was never completely emptying my bowls.
- Soar, sensitive, itchy, and constant uncomfortable feeling in my abdomen.
- Tingling in my left shin.
- Tingling in my ankles.
- Tingling in my toes.
- Loss of hair on my legs from my shins down to my feet.
- Constant dry skin.
- Constant sweaty feet, that felt cold with any drop in temperature.
- Occasional sweaty hands.
- Constant cold hands during the cold months of the year.
- Cuts and scrapes took forever to heal and left ugly scars.
- Discoloration of the skin around my ankles, and ankles constantly itched.
- Blemishes on my face and knees.
- Very sensitive skin.
- Intolerance to most foods.
- Lactose intolerant.
- Cracked and receding skin around fingers.
- Receding gums
- Weak and easily fatigued muscles, especially in legs, arms, and hands.
- Any type excursion left me sweating and exhausted.
- Periods of unexplained nervousness and anxiety.
- Continually stressed out.
- Numerous mood swings.
- Occasional back pain.
- Constant blinking from feeling that something was always on the lenses of my eyes.
- Eyes were very sensitive to sunlight and glare.
- Pronounced dark circles under eyes.
- Eye rims constantly a bright pink and very sensitive.
- When looking at certain digital displays I would see double, moving images.
- Did not feel or look healthy.
My nurse practitioner set me up to see a dietitian and to attend a carb counting class. She also changed my Basal insulin to Lantus from NPH and she got me interested in getting a pump. She is a pump wearer herself. It was all so surreal to me: I did not know my nurse practitioner was a diabetic when I first saw her. She looked so healthy and full of energy to me. Here I was drained of energy, just trying to go on the best I could, believing that this was the way diabetes was. This first visit changed my whole perspective, and I decided from that day on to take a proactive approach in gaining control of my diabetes.
My appointment with the dietitian and carb counting class were more than a month away. I could not wait that long to learn what I felt I needed to know. I wanted to get healthy and feel healthy. I had a new motivation come over me that I had not had in 28 years of diabetes. I did research on the internet. I read carb counting books, the ADA book, self-motivation books, and a very good book, even for those not on a pump(I was still on MDI); Pumping Insulin. The book Pumping Insulin put it altogether for me. It helped me figure out my insulin to carb ratio, my high sugar correction factor and my low sugar correction factor. I learned how to plan for exercise and to adjust my insulin or my carb intake to compensate for it. I bought a Palm and put the USDA Nutrient database on it.
Well, by the time my appointment with the dietitian came around I knew more about carb counting than they could teach me in class. She was very impressed, and told me not to bother with going to the carb counting class. This made me feel pretty good. I was gaining confidence that had eluded me for many years. By this time I was feeling better and my energy was slowly increasing. My HbA1c went from 7.2% to 6.8% in 31 days. I had never been below 7.1% in all my years of having this disease. In those 31 days I was still on what I would call a roller coaster, just not as bad as it had been. My lows were not as often or as extreme. My morning BG’s were still very inconsistent. My post meal BG’s were better, but I still felt that they were not consistent enough. My HbA1c most likely would have continued to get a little better after a few months of doing what I was doing. However, I wanted to be consistent throughout the day- 24hrs a day. I asked the dietitian if there was food that I could eat that would exactly match the action of the insulin I was taking. She said it was different for everyone and I would only learn through trial and error (and at the same time she was telling me I needed to eat more carbohydrates). Shortly after this I clicked on Dr. Bernstein’s book, Diabetes Solution, on Amazon. I had seen his name on the internet over the prior weeks but had never investigated it any further. His treatment plan is aimed at normalizing blood sugars in all diabetics, even Type 1’s. I was just trying to stabilize my sugar within the ADA recommended guidelines; I did not think normalization was possible. I read his introduction online, ‘My First 50 Years with Diabetes’, (It’s now called: ‘My Life with Diabetes: 64 Years and Counting’) and boy what an inspiration. I remember calling my wife before I left the office to tell her I was going to the book store on my way home, “I think I have found my answer!” I read the whole book that night. His Law of Small Numbers just made sense to me.
I started practicing Dr. Bernstein’s treatment plan on May 3, 2003. My experience with his plan has been nothing less than euphoric. In very short order the difference it made in my life on several levels is beyond extraordinary. It took a few months to dial things in thru trial and error, but it was well worth it. The large swings in my blood glucose levels are a thing of the past and most important I no longer suffer from the devastating low blood sugar attacks that had plagued me since being diagnosed. I never eat between meal snacks and skipping meals is never a problem. My energy level improved to higher than I can ever remember it being my whole life. It vastly improved my quality of sleep. I fall asleep in minutes, instead of hours. The tingly in my legs and toes went away in a matter of weeks. My ankles stopped itching, and the discoloration started to fade. Before I knew it the sensitive, dry, blemished, and cracked skin had cleared up. My cuticles went from dismal and unsightly to looking absolutely normal. In no time my eyes no longer bothered me, and the dark circles and pink rims went away. The years of discomfort I had lived with in my abdomen, the bloated feeling, intolerance to foods, and the constant flatulence all cleared up. My drastic mood swings, moments of anxiety and constant stress also went away. I no longer have chest pains. I no longer get exhausted from sudden exertions. My feet and hands no longer get sweaty or cold. Cuts and scrapes heal completely in no time and leave much less scaring. I eventually cured the pain in my left shoulder and left thigh.
I found out after reading “Some Long-Term Sequelae of Poorly Controlled Diabetes…” on Dr. Bernstein’s web site that the pain I was experiencing in my left shoulder was a condition called frozen shoulder and the pain in my left thigh that ran from the back of my knee up into my buttocks was a condition called Iliotibial Band/Tensor Fascia Lata Syndrome. These conditions are the result of glycosylation of proteins in muscles and tendons caused by high blood sugars (glycosylation causes fibers in muscles and tendons to stick together triggering painful and debilitating inflammation in muscles and joints). Dr. Bernstein has successfully cured these conditions thru the use of deep trigger-point massage of muscles and tendons. Back in 2008, I asked for and received a referral from my endocrinologist to visit a physical therapist for help. I took along a copy of Dr. Bernstein’s writing. They looked at me with a blank stare. They had never heard of deep trigger-point massage. So they prescribed stretching and strengthening exercises for my shoulder. They had no recommendations for the pain in my thigh. I did the stretching and strengthening exercises diligently four times a day as prescribed. After 12 weeks my range of motion had improved a little, but nowhere near normal, and the pain had not improved at all. I finally decided to try the deep trigger point message on my own. I had no idea how to do it, but in my mind I had nothing to lose so I went for it. For my shoulder; I would sit at a table (without a shirt on) and stretch my arm out to the side at about a 30 degree angle from my body and relax it on the table. It is important to relax the arm completely. Using my fingers I found many hard nodules on the tendons all around the shoulder joint (some very deep). Also I found nodules just above my elbow and all along my triceps and bicep. Every Saturday morning I would deeply message each of these nodules for several minutes with my fingers. The pain was somewhat intense, but each week the intensity weakened and I would find less and less nodules. After about 8 weeks the pain was completely gone and I had better range of motion in my left shoulder than I did my right. At the same time each week I used an electric massager with “fingers” to deeply message all up and down my quad muscles in my left leg and did deep trigger point message on nodules I found in the tendons just above my left knee and nodules I found in my upper leg all around the groin area and the area just below my left butt cheek. After about 12 weeks of self-therapy on my left thigh the pain was completely gone. With normalization of my blood sugars neither the nodules nor the pain have returned since.
The great results I experienced were a real motivator to keep doing what I was doing. For the past 8+ years on this diet I continue to check my Blood Glucose 7-10 times per day. Before going Low-carb I was taking just over 60 units of insulin a day (and believe it or not at that time the dietician thought I was not eating enough carbohydrates). After going Low-carb my total insulin requirement dropped to below 20 units per day. My HbA1c’s dropped from 7.2 to 5.8 in 4 months and eventually dropped to a low of 4.4 by December 2007. I have kept my HbA1c’s at or below 5.0 ever since. Way back in 1989 my urine showed that I was spilling greater than normal amounts of protein; a sign of early stage diabetic kidney disease. On this diet my kidney function is absolutely normal. Latest Random Micro Albumin in June 2011: Urine Creatinine Random: 112.8 (27.0-300mg/dl), Random Urine Micro-Albumin: 0.40 (0.00-1.90mg/dl), Micro-Albumine/Creatinine Ratio: 3.5 (0.0-29.9mg/dl). My eyes after 37 years of diabetes are doing great. I do have Mild Nonproliferative Retinopathy, with the existence of a few microaneurysms in each eye. This has been stable since 2003. Prior to normalizing my blood sugars I had increased pressure (Mild Glaucoma) in both eyes going back to 1990 and documented up until early 2003. Since normalizing my blood sugars the pressures in both eyes are completely normal. I do not take a statin. My last cholesterol in June 2011 measured: Total: 203md/dl, Triglycerides: 45mg/dl, HDL: 83mg/dl, LDL-Calculated: 111.1md/dl. I’m six feet tall. Just before going on this diet my weight was 188lbs. After starting the diet my weight dropped very quickly to under 150lbs, which to me was way too low. I started gaining weight back after I started diligently strength training and my weight has been stable at around 170lbs ever since. This diet gave me confidence in my diabetes that I was lacking for years. I am no longer self-conscious about it. I have opened up. I am now an advocate. I talk to anyone, who will listen, about all aspects of my diabetes.
Eight+ years is a long time and there have been plenty of up’s and downs (business, personal, family health, relationships, etc.) along the way, but I have stayed true to the diet and I do not believe there is a better way to control my blood sugars, avoid complications and live a healthy lifestyle. I’m still seeing the same Nurse Practitioner that I first went to over eight years ago. She is totally supportive of my adoption of Dr Bernstein’s regimen to treat my diabetes. My turnaround has somewhat amazed her and I have even taught her a few things through the years. I abruptly stopped exercising back in June 2010 due to a serious sudden family health crisis that with the grace of God turned out okay. Just recently, after finding and reading Steve Cooksey’s story, I was motivated to get back to regular exercise. Thanks Steve!
There is a point that a person has to get to in their life before they decide to make a change. If I had heard about Dr. Bernstein back when I was in college I never would have tried his treatment plan. I was feeling good and feeling good about myself. I was not thinking about the future and what I was doing to myself. The biggest regret I have in my life is not taking charge sooner. When it came to my health, I made many poor and uninformed decisions. I fortunately made a change before it was too late. Early stages of Retinopathy were already in place and would have progressed. Kidney disease was already present and would have continued to deteriorate. I was suffering from neuropathies in my lower extremities and from glycosylation in my muscles and tendons. I was exhausted, among other things. Most of my complications came on slowly, to where I was not aware that they were happening, but they caught up with me like being over taken by a freight train. When I took a good honest look at the problems I was having I could not believe how bad of shape I was in. I made a choice to make a change. I finally faced things head on. I finally got over the denial I was in for almost 30 years. I hope others choose to make the changes that will benefit their lives and health much sooner.
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