The Stories behind the "Faces of Diabetes" ...
The "Faces of Diabetes" was a dream of mine to show what diabetes "looked like". In 2005, I decided that I wanted to show the beautiful faces of people living with Type 1 Diabetes while allowing those people to tell their story and help others understand what diabetes is really like to live with. Below are some of the incredible and inspiring stories of real people...the real faces of diabetes!
To protect the identities of those involved, only first names have been used. All of the people involved in this project have provided Diabetes Advocacy with written consent to use their stories. No names or stories can be borrowed or used without the express written consent of Diabetes Advocacy and those parties involved. Diabetes Advocacy does NOT sell names, mailing lists or other information regarding those who share their information with us. If you would like to share your face with us, please send us your story, picture and authorization.
My husband has been a diabetic since 1978. He lost his hands in a tragic accident in 1970. When glucose meters came into use, he couldn't use one, of course, because he had no hands to test on. In 2001 the first alternate site glucose meter came along and we began testing. In 2002, my husband's diabetes became brittle in spades. He passed out right left and centre--at work, in the woods, at home.
Our endocrinologist decided we needed an insulin pump. We were trained on nutrition and carb counting and then we were trained, kind of, on the insulin pump. My husband was a quick train because he's a computer programmer and thus, used to reading manuals that tell the reader what to push to get a certain result.
My husband after I squawked to our endo was given 2 glucose tests per day paid for by Community Care Access Centre. A year after he was given this help at work, it was taken away. He had to retire. An early retirement package, not a disability pension was our best option because the company ELF Group hinted that it would cut our extended health and life insurance after 2.5 years if we went out on disability. Nice! Guys! NOT!!!
After 31 years employment, we found out that we couldn't keep our benefits until after we retired, only for 2.5 years when we'd be terminated with 6 months severance, I guess. However, my husband did qualify for CPP disability which will run until he's 65.
Why am I writing you this? The Canada Pension Plan is willing to say that my husband is qualified for CPP disability because he cannot do his own blood glucose monitoring. It is willing to do this even though Revenue Canada won't give a child in much the same position--can't monitor, can't measure and prepare own food, can't run his own pump because of immaturity issues--a lousy Disability Tax Credit which will net him or her under $1,000.
Another issue for me is that I think we need the equivalent of a 504 in our schools. We need to show people how diabetes type 1 is managed today. If we all teach our friends, family and neighbours, people will better understand what a family goes through when someone has type 1 diabetes.
On April 9, 1998 OUR world changed forever. Our son Bretton was diagnosed with Type 1 juvenile diabetes at the age of 2 years old.
Bretton had been sick with a terrible flu virus and had been exposed to chickenpox, and as a result had been vomiting and had very high fevers. This lasted a couple weeks and resulted in him BEGGING for water at all times of the day and night. We took Bretton to the local doctor several times as he was very irritable and could not stay in a room without one of us there. The doctor kept telling us that it would be "too much trouble" testing such a small child for diabetes, so to keep an eye on him and monitor his water consumption. He got up to as much as 80 oz a day and still we were told not to be so paranoid.
Bretton began to have severe night terrors and had a glazed look in his eyes when he woke up from sometimes a three-hour nap. He also woke drenched in sweat and soaked to the skin with urine. He would eat voraciously and never seemed satisfied. We potty trained him in one day as he was constantly going to the bathroom, and we rewarded him with drinks of water! When I saw that his potty chart said he had gone 17 times in 4 hours, I called to make an appointment with another doctor.
Bretton was diagnosed with a blood sugar reading of 42mmol (Canada), normal for his age would have been 5mmol! Bretton was in severe DKA and his organs were in danger of shutting down. He was admitted to Children's Hospital Pediatric Intensive Care Unit and we stayed there for 5 days.
This story could have been different. Bretton could have died that day. Instead, he lived and still lives as a happy, healthy little boy who loved dinosaurs and sports and playing with his friends. Thanks to an Insulin Pump, Bretton leads a very normal life, although he has pokes and requires insulin and constant monitoring for high and low blood sugar. This is a full-time job for us and we have tackled it head on.
In Manitoba, they are diagnosing an average of 1-2 children a week with this disease! We do not have anyone with type 1 diabetes in our family, and still we are affected. Looking back the constant thirst was the biggest symptom, so be aware of that.
It is now the year 2005, and what a change in our lives. Bretton is now 9 years old and has had type 1 diabetes for 7 years. We no longer use needles to deliver Bretton's insulin; we are blessed to have an Insulin Pump.
This tiny miracle device delivers Bretton's insulin through a tube and infusion set and to him it means NO MORE NEEDLES!
I’ll Have My Life Sunny Side Up, Please!
I have no recall of the time when I was diagnosed as a diabetic, at age 2 ½, in 1951. I can however, look back now with appreciation, at how wonderful my parents were in bringing me up as a normal, every day kid, during a time when diabetic care and treatment was still rudimentary at best. The discovery of insulin in the 1920’s was inaccurately perceived by many people to be a cure, rather than the artificial intervention it actually is, thereby permitting diabetics to at live a rather tenuous and restricted life. This was the life I was born into and I knew nothing different from what I had experienced all along.
My parents did things to make my life more comfortable, productive and healthy. I was encouraged to participate in sports and be as active as any kid in the neighbourhood. They also mandated that I test my urine (totally obsolete and inaccurate based on today’s standards) to monitor my sugar levels. Needles and glass syringes were boiled in water and when they were scalding hot, insulin derived from pigs, was drawn up. Needles were replaced when the “ouch factor” got too high. My mother wisely rotated my needle sites – arms, legs and the horrible bum shots.
As an adult, years later, I added my abdomen as an additional site. My mother’s due diligence has allowed me to live with minimal scar tissue. Meal times were always very precise in our home. I was never allowed to sleep in and you could tell the time by the hour breakfast, lunch, supper and snacks were served. My meals were simply horrible. I received no sugar and variety was negligible. Again, as an adult, I must express my appreciation to my parents for presenting meals that I was too young to understand were prepared with my best interests in mind. My poor parents must have received my scorn and derision over and over again based on the food I had to eat.
At school I had excellent friends. They constantly looked after me, especially when I had that funny look in my eyes and exhibited behaviours that were out of character. Such are the joys of hypoglycemia. I was never a discipline problem, or an academic failure, but many teachers did not welcome me into their classrooms. My grade 4 teacher in fact explained to the class that I was “different” and they would need to realize I would receive special privileges that she did not believe in. Throughout my childhood I was never invited to a sleepover at any of my friends’ homes or cottages. How many children experience this crushing blow to their egos and self-esteem? Only a few friends in fact had me for dinner and the reason was obvious – diabetics required constant monitoring, special foods and created unnecessary work. Simply stated, I frightened people. I was however, able to go several times to a camp for diabetic and cardiac children. The specialty of the camp, I believe, was knitting and quilting because we participated in very few fun activities. What we did have was an abundance of unyielding, uncooperative and totally miserable wardens. One day the diabetics were served the apple crumble dessert intended for the cardiac kids. The cardiac kids protected us, through their silence and didn’t say a word as they watched their favourite dessert being devoured by a pack of ravenous diabetics. In our defence it’s hard and also impolite to speak when you are gobbling down a delightful, but forbidden treat. The next morning of course we didn’t do well at the pee trough. I believe the wrath of the wardens was worth it to every diabetic and it is likely the only positive memory I have of camp.
In later years, at school, I was removed, at times, from physical education activities. I was perceived to be a risk and was placed alongside other pupils who were also deemed to be unfit or unable to participate. This was normal treatment from people who thought they were being kind, but instead sent messages of “you are different”. The willingness to adapt a lesson to accommodate the needs of the participants was unheard of at that time.
This message unfortunately, was also the perception of my sister. I attribute our continued strained and uncomfortable relationship directly to her perception of my diabetes. She felt the extra time my parents spent monitoring my diabetes equated to their favouring me, over her.
As the years passed by, knowledge of diabetes has evolved. Someone finally figured out that diabetics needed more than insulin to lead productive and healthy lives. Blood glucose monitors were one of the simplest, yet most effective tools created for the benefit of all diabetics. People are now able to monitor their own blood sugar levels with ease and an accuracy level almost equivalent to what a lab generates. By that time I had been a diabetic for approximately 31 years and complications I had read about, in other diabetics, were about to become a frightening and permanent reality of my own life. I had a massive myocardial infarction at age 33. Regular visits monitoring and testing my heart by a cardiologist have been in place since that time. By-pass surgery was carried out in 1989 when I was 40 and blockages, developed through time, left me with a mere pinhole opening for blood flow in my arteries. At the time of my heart attack I was told I required massive laser treatments to correct retinal bleeding or I would be blind in less than a year. I have been followed by a retinologist from that time on. Kidney function became an issue in 1998. This led to a referral to another specialist that I now visit routinely. A Charcot Joint in my left foot was diagnosed in 2001 and I now must wear custom boots, or as an option, not walk at all. The last joy my doctor delivered was a desire to investigate the link between diabetes and osteoporosis and celiac disease. I haven’t received the results of these tests yet. I can hardly wait! Every trip to the doctor is an adventure and at times it is difficult to keep your spirits up. However, I choose to lead my life looking at the sunny side.
If your glass is half empty you are missing many of the treats that life offers. I have been fortunate to have parents who raised me to play sports, to get out in the world and to be a contributor to the society I am a member of. Ultimately I learned to assume responsibility for the cards life dealt me. I do my best to only whine about my golf game, not my diabetes.
For years now my biggest advocate has been my wife. She is the jewel of my eye and I call her “the Princess”. She is a registered nurse and ferrets out information to continuously help me lead a responsible, well informed and healthy life. She became a diabetic educator years ago and to this day attends in-service sessions dealing with diabetes and its management. She gives me a boot when I get discouraged and prompts me on.
My children, when youngsters, were raised to be proactive, helping me to handle my lifestyle in a diligent manner. In my career as an elementary school principal, my pupils gave me the respect, dignity and understanding often lacking in older people. In my experience, children have been the most compassionate and intuitive people I have dealt with. To be successful, a diabetic requires advocates and I have been fortunate to have always had people supporting me when I needed them most. Part of this is good luck and part is attributable to attitude and a person’s outlook on life.
Diabetes is a 24 hour a day, life long commitment – there are no breaks or holidays. Maintaining control is a prerequisite to a healthy life but this is often easier said than done. Physical activity, food intake, work and home pressures all take a toll on a diabetic’s life. In addition to other factors, the expenses associated with diabetes and related complications are staggering. My ongoing medical costs currently equate to almost 33% of my net income. Proactive financial solutions must be found, especially as the incidence rate of diabetes escalates in society at large. Until recently, long term sufferers, such as myself, did not have the advantages modern technology currently provides. As a result, I must live with the consequences of the time in which I was born. The advancements researchers are announcing should encourage diabetics that a better life, with meaningful support, awaits them.
My name is Cameron and I am 7 years old. I was diagnosed with Type 1 Diabetes a month before I turned 2. I remember being in the hospital and getting a lot of blood work done. I was very afraid. It hurt so much. I remember mommy was crying a lot when she had to talk to people about why I was so sick. I also remember being really hungry and not wanting anyone to be near my food. My mom and dad would take turns sleeping with me at the hospital. I was in there for 3 weeks. I got a lot of presents and cards. When I first got to the hospital, my sugar level was 38 mmol/L, which I know now is not very good. I have learned a lot about me and my diabetes since then.
I am now in grade 2 and in French Immersion. I have a lot of nice friends who know about my diabetes. Sometimes, I need their help in school, if my sugar is not good. I know when my sugar is low and high. When I am low, I feel really tired. It is a bad feeling. I know that I have to eat something quick to get my sugar up. I like it when I get to drink some regular pop, because that is the only time that I am allowed. I have to be very careful with what I eat and sometimes I get mad at that. I can’t eat anytime that I want to. I have to eat good food.
I know how to check my sugar. That doesn’t hurt. My needles that my mom and dad give me hurts a lot. Soon my mom and dad is going to teach me how to give myself my own needles. I hate having to take 3 needles a day. It’s not fair. One time, my mom gave my dad a needle in his butt to show me that it was okay to have a needle there. That was really funny. I still cry almost every time that I have to get a needle. I know some stuff about the pump but I don’t want to use it yet. Maybe when I am older, like about when I am 10 years old.
There are lots of things I don’t like about being a diabetic. I am sick a lot of times with the flu. I also have asthma and sometimes I have to go to the hospital to get mask treatments. I really hate it when my mom wakes me up in the middle of the night while I am dreaming a good dream because my sugar is low and I have to have a snack. I hate it when my sugar is high and I have to keep using the bathroom in the middle of the night. I hate it when I am outside playing with my friends and I feel my sugar is getting low and I have to go in and eat or I have to come in for my needle. One thing that I like is when I have to go check my sugar at the principal’s office at lunchtime and when I get back to class it’s time for lunch.
I am always asking my mom and dad when there will be a cure for diabetes. They say that hopefully one day there will be a cure for me and other kids who have to take needles. I can’t wait for that day to come. I will be really happy then and so will lots of other people in the world.
We just wanted to write and share with you our success story. Our family’s motto is to be as positive as we can about our life with Diabetes. We have tried to do everything we could to make our son have good experiences and know that not all of DIABETES is a drag.
Our son was diagnosed 3 ½ years ago. It is day that no parent will ever forget. He came to us with that shaking, out of control hand saying how thirsty he was. You know in your heart that something is really wrong. Within the day we go by ambulance to the hospital 3 hours away and stay there for 3 days to learn how to be a Doctor, Nurse, Dietician, Mathematician and so on are the list of duties that we now perform. It is an overload of information. The first 6 months you are just overwhelmed and cry at all the little things. Wow. Things do get better. By about a year we were up and moving.
We started our own JDRF walk for the cure in Lloyd (which has been a incredible success) in which Connor is the walk ambassador and we are family co-chairs, began a support group for parents to get together and talk. Signed up for family diabetes camp (sit on the organizing committee) and went to any conference available.
At our walk this year I told my son Connor that if we raised $5000 I would get a tattoo. It was to signify all the pokes and needles he gets and something painful I would do for him. We made it, needless to say and I have a beautiful tattoo of a Lotus flower with the words HOPE underneath with both being very symbolic. Last year I cut off all of my hair when we made our same total. It sounds pretty crazy but as a parent I would do anything for them.
This last year has been the most memorable for our family though. It began in Nov. with our son Connor being chosen to go to Ottawa for the kids lobby for a cure day. What a great experience that was. He met some MPs and made some wonderful friends there. Then in May he was nominated by JDRF to go on the Dreams take Flight trip and go to Disneyland for the day. What a brave kid. How many kids do you know that would go on a plane without their parents and fly with strangers (wonderful chaperones) at 7 years old.
Then in August we were able to go on an insulin pump from the wonderful assistance of our local Royal Purple ladies club. This has been just the most amazing turn around for our son. It has provided so much freedom for him. He can have snack at the same time the other kids do at school now. He can eat at different times not at our regimented times we ALWAYS had to. We can flex carbs too which means we can eat as much or as little as we want. Also Connor had the flu last week and it was just incredible how it made things so much easier for him. Sometimes those bad flu’s land him in the hospital but not this time. Also this year for the first time he wanted to go Trick or Treating. Usually this holiday is a big downer for him with all the candy. Not this year. He could just have some and bolus (give himself insulin through the pump with the push of a button) for it. How cool was that.
Let me tell you though that the first month was not easy starting on the pump. He was not allowed any activity, so needless to say at school he had to sit out of gym and recesses and watch his friends play. Plus in the beginning he was doing 10 or more finger pokes a day. Ouch his fingers are still not recovered. We have 2 right now wrapped in bandages that he is not allowed to use.
We just received some worrisome news last week. We found out that my coverage on my health plan is maxed out now for the rest of the year so we are on our own for the last 3 months to try to make ends meet with purchasing Diabetes supplies. Our stress level just went up 3 notches. All the thoughts that go through your head, “How are we going to make ends meet to purchase all the new pump supplies to the end of the year?” Yes the pump is more expensive but it is worth it. I would give up anything to have my son be able to stay on the pump. I know people will say “Well if you could not afford it why did you go on the pump?” It is because it will be totally life changing for him. It will give him freedom like he has never had and he deserves every bit of it.
The first day my son was able to start eating anything he wanted we took him to McDonalds and he ordered a big Mac meal. He has never had one of those before. It was always too many carbs. I just sat there and cried thinking how lucky the rest of us are not having such restrictions on us. I know all the people around me thought I must have been crazy when I crying over my son eating a Big Mac. For his birthday he got to eat a whole chocolate bar. It was so rewarding to see his face, enjoying every morsel of it. The kids at his party could not believe that he had never had a whole one before. We count our blessings everyday for what we have.
There is not a single day that goes by without Diabetes being in our whole family’s life, even little brothers. (As parents too we always have to wonder and some days worry if our other son will develop Diabetes too.) For our son it is every hour that he has to think about it. We can not wait for a cure so we can get on to a life without this horrible disease. The financial burden that befalls on a family after they are diagnosed can be very overwhelming. I know there are many days when I think of all the money we have had to spend. It makes me feel so frustrated. We do what we have to for our children. I would like to think that that money could have been used to go towards a University Education. We really want a bright future for our son. Let’s find a cure and let all the children know what a life without Diabetes would be like. Lets hope that it will be soon.
The weekend before Halloween 2001, I was busy finishing costumes for my daughter Danika, her sister and brother. Danika, a very active seven year old wanted to be a knight. Little did I know how ironic that would be because this was a Halloween that she was going to have to be very brave indeed.
I was a little concerned that weekend as Danika had been making frequent trips to the bathroom and wet the bed a couple of nights. That seemed unusual but the fact that Danika had been drinking so much water before bed seemed to explain it. Perhaps a trip to the doctor would be necessary on Monday in case of a bladder infection.
After Danika came home from playing her first hockey game her Dad noticed her uniform soaked with urine. That was the red flag that sent my husband, a pharmacist, down to his store to get a glucometer to check her blood sugars. After a painful finger prick the reading showed very high blood sugars. He told me she might have Diabetes. He quickly whisked her off to the Cambridge Memorial Hospital while I researched the symptoms, hoping against hope to find some other explanation. The information I found just confirmed what we feared, she had the classic symptoms: excessive thirst, urinating frequently and losing weight. It was only then I recalled mentioning that her jeans were loose and she was losing her baby fat. All in the matter of an hour my husband called from emergency; Danika was diagnosed with Type 1 , a chronic disease making her insulin dependant for life. We’re lucky that we brought her in before she went into life threatening Diabetic Ketoacidosis. Danika spent the next week in the hospital learning as much about Diabetes as a seven year old can grasp. My husband, Rich, and I scrambled to make arrangements for her siblings so we could learn about insulin injections, blood testing and diet.
We spent Halloween that year in the hospital practicing giving insulin injections to grapefruits and dolls. We learned we would have to know the carbohydrate count of everything Danika ate so she would get the proper dose of insulin. Danika and I practiced by counting the carbs of the Halloween candy, pizza and chocolate milk that she got at the hospital party. We learned how to recognize a low blood sugar and treat it before it got dangerously low.
Although I didn’t quite finish the Halloween costumes that year, Danika still got to be a knight and the staff thought she was the bravest little knight in the world. She learned to inject her needles herself and prick her finger for blood tests without even complaining. The scariest part for us was when we had to go home and manage this on our own without nurses and doctors overseeing the injections and balancing the high and low blood sugar.
Danika is now eleven and has put up Juvenile Diabetes for 4 years. She is still a real trouper but not without those moments of wishing Diabetes would go away. It is a very complicated condition that requires constant management. Parents can feel very stressed at the time and energy it takes to manage this roller coaster of a disease. It can also be a financial burden because insulin and supplies are not covered by our provincial health plan.
While we marvel at how kids cope with these
challenges it breaks our hearts as parents to see them have to put up
with this disease day in and day out. Always counting carbohydrates,
getting six needles a day, 5-10 finger pokes for blood tests plus the
constant worry about low blood sugars that could lead to a coma.
Everyday, every minute without any breaks.
Last year we bought Danika an Insulin Pump which has improved her bloods sugars and quality of life. It is a devise that should be available to all Type 1 Diabetics but the $6,000 cost plus supplies is too high for many families to afford. It is my hope that, through awareness, more funding for coverage of pumps and supplies for Juvenile Diabetes will be available. There is also very promising research to cure this disease being done in Canada and our Government should allocate as much support and funding as it can so our kids can be free of this burden once and for all.
'A Night in the Life of a Modern Day Knight'
I jolt out of bed. My feet hit the hard, cold flooring. I feel my way along the corridor. No light is needed. I instinctively know where my tools, my weapons are laid out. It is 2am.
How I loathe this bloody ambush about to be undertaken. With the visage of a medieval knight, armed now with my lancet, I stealthily creep up upon my victim. This martyr. This bairn of mine.
Like the javelin of the Anglo-Saxons, my lancet too ends in a deadly needle point designed to arrive with little or no warning. And like most ambushes, success lies in concealment and surprise. The more routine hack and bash of medieval ravages is absent from my attack. For this I am hugely grateful.
My victim barely stirs from the assault. A valiant warrior is he at the tender age of 7.
I am just as clever in the art of wielding a weapon as those in the battle of 1066. While such year marked the end of the domination of the Anglo-Saxons, I have far from conquered my bairn's disease - Diabetes. Here too, luck and organization are vital components of success, although unlike conflicts of old, the promise of good wages and a share of the spoils of victory for those who aid in the siege against diabetes - this is not immediately in the offing. Battles of present day involve research and colossal sums of money. The spoils of victory : witnessing the millions to be unfettered from the precarious daily management of their disease.
Immediate rewards have no calling here. Vision, persistence and patience reign.
Our smaller warriors are immersed in an overwhelming endurance test. Continual assaults, much in the form of modern day bloodletting rituals, are fortified by the onslaught of three or more insulin laden syringes. One may concede, this barbaric approach is a requisite procedure for survival, but what century is this after all!
Baboons streak through space. Meanwhile down below, medieval practices continue to be inflicted upon children with diabetes. Diabeasties as my child so aptly put it.
In one hand we hold a lance for drawing blood, in the other a sophisticated instrument capable of detecting and measuring glucose levels in the blood. Only with the use of both the archaic and state-of-the-art technology is one able to assess this vital blood reading. Is this some corrupt binding balance? If only the archaic end of things would recede into nonthreatening annals of yore, leaving one with non-invasive tools of the trade.
It must be said of the many research groups on the threshold of delivering astounding alternatives to present management practices - that they deserve laudatory notice.
Meanwhile, we wait in the wings, armed to the teeth with an unlikely assembly of implements until innovations are proven and approved. The battle lurches forward, patience stored in every sheathe.
After burying the lancet into my young warrior in the cold black of night, I am jolted forward into my own time, the stout technological genesis of the 21st century. The instrument resting in the palm of my hand is digitally counting down from 20, the microchip's performance kicked into action via a drop of young, red blood. Holding my breath in anticipation I make haste out of the darkness and toward the mellow light of the kitchen. This time the blood glucose reading is 9.3. An audible sigh of relief. No need to grab sugar laden liquids. To charge to my bairn's bedside. Forcing it upon him before the risk of slipping into a coma becomes an ugly reality.
Shuffling off to bed I take a triumphant look back at him. The motionless body on the bed whispers, "What am I Mom?" "You're just fine Dylan, 9.3." The somnolent words, "Oh, good," drift out and mercifully he will shortly be in another place where lancets don't reach. Where diabetes can't taunt and stab. Where a medieval knight remains safely within the realm of parchment.
Somewhere around 1983 while working up in Lupin, N.W.T. for a mining contractor I came down with something that caused me to lose a lot of weight very quickly . The company nurse was very fast to determine that my blood sugars were off the wall and contacted the diabetic center in Edmonton, Alberta to book me in . I was on the company jet the next day a very upset and nervous man with a pamphlet on my lap showing me how to inject insulin . Not only did I have a big part of my life taken away but also lost my job because there were no facilities to treat a diabetic at the mine site . From that day forward nothing was the same . I was on insulin injections and even though I new that I was diabetic I was in denial for many years .
After many years of fighting with this disease and getting a blast from every Doctor I ever met for poor blood sugar control I found the ultimate tool . While searching the internet with my new found toy ( a computer ) I found an Insulin Infusion Pump . After doing a lot of research on this item I went to see a General Practitioner here in Lac Du Bonnet who referred me to an Endocrinologist in Winnipeg . That was during the winter of 2000 and I was hooked up on June 13th 2000 . My blood sugar average came down from 13 to 7 and I am still at that good number.
Before the pump I was always fighting hi and low blood sugars and now I have very few of those . I have maintained a good job with very few sick days . I am not cured but in much healthier condition than I have ever been since becoming a type 1 diabetic . I have been on a pump for 5 years now and would suggest one for anybody that cannot or has problems controlling this dreaded disease
GailI’ll never forget that day. November 15, 2004 the day that Gail was diagnosed with Type 1 Diabetes. We knew something was wrong the few days previous- Gail had been potty trained for over 5 months and all of a sudden she was wetting the bed and drinking like a fish. As parents, we both hoped it was just an infection of some sort, but within minutes at the doctors office we had a diagnosis. Gail tested positive for juvenile (Type 1) diabetes. “ Diabetes?” I thought. No one in either of our families had diabetes. My baby…diabetic…”what does that mean?” I screamed, I yelled, I cried…we cried.
Next came 2 intense days at the hospital of learning to give needles to our 3 year old. I’ve always been nervous of needles; giving them to my baby 2 - 4 times a day was unbearable. We learned to check her blood sugar 4-5 times a day, which is also another “pick”, to draw blood from her finger. We had to learn what food she could eat and when. What to do if she gets sick, what to do if she has hypoglycemia (low blood sugar), which can make her slip into a coma. What to do if she has hyperglycemia (high blood sugar) that can cause ketoacidosis…you can die. Not to mention the long-term problems such as kidney failure, blindness, amputations, etc. All of this in 2 days!
It’s been almost 1 year now and we have learned that every high and low is not life or death, but still very serious for her health and how she feels. When we check her blood sugar she holds out her finger and as I poke her to get blood. She makes sure we always have a tissue ready to wipe away the blood. It was the struggle with the injections that are the hardest part. We had to learn the “wrestling holds”, that snuggles make it feel “not too bad mommy”, and that the tears only last a second (well, hers anyway). We have also put Gail on an insulin pump which will level out her sugar levels easier, and the most important part- it means only 1 “injection” every 3 days instead of 3 a day. She still has her “finger picks” 4+ times a day, but being able to eliminate that “leg/arm/bum pick” 3 times a day is huge- even if it is just emotionally.
Last Christmas when sitting on Santa’s knee, he asked her what she wanted for Christmas. Her response “no more diabetes”. Santa looked at me speechless, and then asked her if there was anything else…she choose “My Little Ponies”. Christmas afternoon she said to me alarmed “Mommy, Santa forgot something”, of course being a mom I was scanning my brain, the gift pile and couldn’t think of what “HE” may have forgotten, so I asked her. She told me “He forgot to take my diabetes away”. I told her “maybe next year” and I had to leave the room for fear of breaking down in tears in front of her. Then she asked if the tooth fairy would take her diabetes away when she came for her loose teeth (when they eventually do fall out). We just had to say “we’ll wait and see”.
We have had to get a nurse to stay with her during school (Junior Kindergarten) to make sure nothing happens and to keep her BGL “under control” since the school will not accept any of that responsibility (even though she is not quite 4, she would have been expected to do her own finger prick and use her pump by herself). As if sending my baby off to school on a school bus isn’t hard enough but to worry about her being in a school without support was the hardest thing I had to think about.
Just the cost of supplies on parents and caregivers for children with diabetes is shocking. The test strips alone to check her blood sugar levels are over $100.00 per month, as well as the insulin, the needles, the actual blood sugar level monitor, ketone strips for when she gets sick, and if you do decide to go with an insulin pump they range from $6,200-$6,700.00- and you still need the insulin and test strips with that as well as the infusion sets ($217.00/month) IV prep wipes and remove.
Gail has adjusted well to her new “situation” and sometimes I wonder if she remembers what life was like before she had diabetes. When Gail was born she was only 3lbs, 14oz so she was in the N.I.C.U. for 2 weeks. We recently showed her pictures of her as a baby in the hospital.nbsp; She looked at the pictures and exclaimed “Mommy, I had infusion sets on then too!!” I didn’t have the heart to tell her that it was the leads for the monitors, not infusion sets. Then again, out of the mouths of babes- maybe it had started back then, and we just had to wait for the symptoms to all but smack us in the face. This is what we need funding for! Research! Maybe if it had of been caught early it may have been stopped. We’ll never know unless someone does something about it!
Help us to make Gail’s (and thousands of other kid’s) dream come true. So that maybe one Christmas morning I can take off her Insulin Pump and tell her that Santa and all his helpers really did take away her diabetes- forever!
Thank you for all your support,
Jenna(I am a nineteen-year-old living in The Pas, MB. I was diagnosed on January 30th, 1996. This is my story)
I was diagnosed with Type 1 diabetes almost three months after my tenth birthday. Although it came as a big shock, I was fortunate enough that my parents knew the symptoms and I received the treatment right away.
Now it has been almost ten years, and I am still not able to control my diabetes well enough. Over the last couple of years, I have been in and out of hospitals…and sometimes more than once a year. Although I understand what it is that I need to do to take control of my diabetes, I still find it incredibly difficult.
In December of 2004, I was hospitalized twice. The first time I went into DKA. I was only in for a couple of days, (three) but I was put on a ‘new’ insulin regime. Two weeks later, I was back in the hospital, but this time after passing out into a diabetic coma. I found out that I hadn’t been doing anything wrong. It was the ‘new’ regime that had sent me spiraling down after being in DKA.
In nine and a half years I have been hospitalized for my diabetes six times, counting the first time when I was diagnosed. I know there are many things that contribute to managing my diabetes, but anything that can make my life a little simpler and keep me healthy is all I ask. It’s hard enough being a teenager, without having to deal with such a serious disease.
Our son Joel was born February 3, 1991. He was a big boy born at almost 9 lbs. Joel had a tonsillectomy at age 5, otherwise he was very healthy. He did everything other kids his age did. He skated, played sports, rode his bike and played video games. In the winter of 2000-2001 he developed a cough every time he exerted himself. Our family doctor told us it was viral and he finally seemed to get over it. In July of 2001, when Joel was 10 years old, he started to lose a lot of weight. He was a little overweight, so we thought he was trying to eat less. We really noticed how he was changing when we were camping and Joel had no appetite (believe me Joel always had a healthy appetite), drank a lot of pop, water & juice. He was moody and when we asked him what was wrong, he would say “I don’t know how to explain it!”
I work at a Community clinic as a Medical Office Assistant, so I spoke to my colleagues about Joel and what was happening. Some told me he should see a counsellor for perhaps an eating disorder, others told me he was starting puberty and not to worry about it.
In August of 2001, we were on holidays and again camping. Joel would not eat and only drink. He was cold and shivering. He slept in the camper most of the day, but yet didn’t want to go home as it might ruin our family holiday. I wanted to go back to town and take him to the doctor. He didn’t want to go. We did go home early on Sunday morning and then Joel started to vomit that evening. We gave him ginger ale, didn’t want him to dehydrate. We knew the first thing the next morning we would take him to the doctor no matter what he said. In the morning, after vomiting a lot during the night, Joel’s breathing was getting laboured. It took a lot out of him just to breath in and out. I took him to the clinic where I worked and let the doctor examine him, thinking maybe if I were not in the room, he would talk to the doctor about what was going on. I thought perhaps he had been abused or molested. I knew about Type II diabetes (adult onset), but knew nothing about Type I diabetes (Juvenile). After examining Joel, the doctor called the paediatrician on call at the hospital in the city (we live 45 minutes out of the city). He told us to go straight to the hospital as they were going to admit him.
I also have a daughter who was 5 years old at the time, so I left her at my sister’s house and my husband & Joel & I headed to the hospital. He vomited most of the way. We weren’t there but ½ an hour and the paediatrician told us Joel had Type I diabetes and he would be on insulin for the rest of his life!!! I can still hear those words in my head. We were shocked! How could this happen. There is no diabetes in my family or my husband’s family. He stayed in the Prince Albert hospital until he was stable (about 3 days) and then was taken by ambulance to the Royal University Hospital in Saskatoon where we met the best peds diabetes team. There we spent day after day learning about diet, insulin injections, exercise, hyperglycaemia, hypoglycaemia and were not allowed to take him home until we knew absolutely everything.
A week later, we took Joel home with a backpack full of information and diabetes supplies. We were nervous and scared that Joel would get a low and never wake up. We were up a 7:00 a.m. every morning (and still are). Joel doesn’t get to sleep in ever. He has to count carbs and take insulin every time he eats. Joel take 5 or more insulin needles a day and tests his glucose levels the minimum of 5 times a day. He has to adjust food and insulin when he exercises. We had to deal with all this and still have time for our 5 year old daughter who thought maybe she wasn’t special.
The long-term effects of diabetes can be impotence, blindness, organ failure and even death. Every time his blood sugar is high, it affects his body.
Joel has adjusted quite well, but he is insulin resistant and his diabetes is hard to control. Every year, he raises funds for Juvenile Diabetes research. In October of 2004, he was chosen as one of 40 delegates across Canada for the Juvenile Diabetes Research Foundation to go to Ottawa and meet some MP’s and the Prime Minister to Lobby for funds for research to cure Juvenile Diabetes.
The insulin, test strips and diabetes supplies are very expensive. Joel would probably do well with an insulin pump, but at a cost of $5000 to $6500 for the pump and $150 to $200 a month for pump supplies plus the cost of the insulin and test strips, it is not an option for us. The cost of supplies is huge, but the cost on the health care system if Joel or other Juvenile Diabetics have long term effects is even bigger.
Joel is like every other teenager. He likes cars, trucks, video games, paint balling playing guitar, some sports and girls. He likes to go to the school dances with his friends. The big difference between Joel and other teenagers is that Joel HAS to get up at 7:00 a.m. every morning, test his blood sugar, inject his insulin and eat breakfast. He HAS to have a morning snack. He HAS to test his blood sugar again before lunch, take insulin & eat lunch. He HAS to test his blood sugar before supper, take insulin & eat supper. He HAS to test again at 8:30, take insulin & eat a snack. He HAS to test again before bed and if his blood sugar is low, HAS to eat again. Sometimes he even HAS to test at 3:00 a.m. Every time Joel goes out with his friends, he HAS to make sure he has some kind of juice or candy with him in case he gets a low blood sugar. As Joel gets older, we worry about alcohol as that affects the blood sugar, which can lead to a coma.
Joel doesn’t complain about his diabetes, but it isn’t fair that he has to deal with this as well as school, puberty, peer pressure and all the other hurdles that he will experience in his life.
WE NEED A CURE AS I AM SURE NO ONE WANTS TO HAVE TO LIVE WITH SOMETHING LIKE THIS EVERYDAY OF THEIR LIVES. IT’S DIFFICULT FOR US AS PARENTS, BUT THINK HOW DIFFICULT IT IS FOR THESE CHILDREN.
JonathanDecember 26, 2004 is a day the three of us will always remember. Yes, we all recognize it as Boxing Day, but in the Butler household it was the day Type 1 diabetes entered our lives. Our son Jon, 16, had been complaining of increased thirst and urination.
This became apparent about 2 weeks before Christmas. Being a Registered Nurse, I knew the warning signs. My nephew, now 7, was diagnosed with Type 1 diabetes at 14 months of age. On Boxing Day, we were visiting family. I had my sister test Jon's capillary blood sugar. We were not prepared for a blood sugar of 30. I remember the fear and disbelief was overwhelming. Needless to say our Boxing Day festivities ended quickly. We drove back to Hamilton on the advice of our family physician (in a snow storm) and headed to MacMaster University Medical Center. In the car, Jon was very upset. First off, he had missed Christmas with family and secondly according to him, he felt fine. My husband and I drove back to the city in fear and total disbelief. Our life was so good, why was this happening to us. As a member of the medical profession, I tend to think too much. I work in Intensive Care and all I could think of was the seriously ill DKA patients I have cared for. However, because I work in the medical field, I knew I had to be supportive to my husband and son as well. It is very difficult to be in nurse mode when the person you are caring for is your child.
I remember giving Jon his first injection. I wanted to burst out crying. The first 24 hours were a blur. I remember the doctor telling us that yes Jon was diabetic. I said are you sure? I learned that day that glucose and ketones in a urine sample gives the definitive diagnosis. It seemed too simple. The second day in the hospital was education overload day. Our morning began at 7 with Jon giving his first needle to himself . We then met with the dietician, clinician and endocrinologist. Words like carbs, meal plans, humalog, NPH, glucagon, ketones, sick days were taken in but not totally digested. By the afternoon we were given the green light to go home. There was so much to do, prescriptions to fill, food to buy and so on. The first night in the hospital, I sent my husband home to get some rest. He spent over an hour in the 24hr Sobeys going over food choices and reading labels. He actually became the food expert.
When we look back on that time we can now laugh but at the time we were two very scared parents. If I was given a quarter for each time either of us asked Jon if he felt ok, we'd be rich. The first two weeks passed quickly, we cried a lot and leaned on each other for support. I think my husband and I had the hardest time dealing with everything. Jon seemed to take it in stride.
I remember saying to my husband why had this happened. I am a strong believer in fate and things having a reason for happening. My husband said maybe it is so we can not only help Jon but others as well. I agree with him. When I think since then the number of people I have educated about Type 1 diabetes it all makes sense. We were both appalled by some people’s total ignorance. It is now 9 months later. Life is good, we all look at life in a different way. Every moment is precious. Our lives are not as simple. Planning outings, trips require more thought but we seem to have that down pat. Jon is finishing Grade 12 and has his G1 license. Even something as simple as going out with him for driving practice means testing first. We have found great support with our friends. Family have been somewhat supportive. We have done our best to educate them but we do not feel confident with their knowledge level and thus don't look to them for guidance. Until you live this disease you have no concept what families go through. Diabetes is a family disease. It not only affects Jon, it affects us all and will for the rest of our lives. Our goal is to maintain good control so complications later in life will be reduced. We know that 15 years has already been knocked off of Jon's life just with having the disease but we cannot dwell on that either.
One has to have hope for a cure. We support the JDRF and personally would like to see better organization of support for families.
The Diabetic Clinic we attend at MUMC is OK but not once has anyone asked if Jon or ourselves would like to speak to the social worker on staff. We recently called to receive direction on Insulin/carb ratio. We have since met with the dietician but it was on our decision to do that. I am so thankful for my medical background and even with it I feel like some days I don't have the answers. I can't imagine what a non-medical person would feel. And for this reason we truly feel more support is needed at this level not just finding cures. I attended a JDRF research symposium in Toronto last May. There was a very interesting speaker from Halifax. He was a clinical psychologist for the Diabetic Clinic and myself along with others in attendance couldn't get enough of him. Each clinic should have such a person for families.
As I have stated our life has somewhat returned to normal or as normal can be. We all appreciate each other and life a lot more and have made it our motto to defeat this disease and provide the best life for Jon. In the words of Oprah, LIVE YOUR BEST LIFE
A Frightening Experience
A frightening experience that I had was when I was diagnosed with diabetes. I was five years old and didn’t know what was going on. I tried to hide my fear while I was in hospital. I tried watching TV and colouring pictures. I was only five, but I still remember it. There were so many kids that I saw in the hospital that had it worse than me, but I was still scared. Every few hours you could hear a cart go down the hallway with food trays. The hospital’s food didn’t taste like mom’s cooking. I decided that I didn’t like it there. The hospital smelled like insulin bottles had fallen on the floor, and the smell was permanent. Even though the janitor sprayed lemon scent around, it still smelled like insulin. That was a frightening experience for me.
Entry in Karlie’s Grade 7 English Journal
Saved by Mom
Karlie was diagnosed with Type I Diabetes in May of 1997.
My daughter Kendra now age 9 was diagnosed with Type 1 diabetes at the age of 3. Having a small child diagnosed with diabetes is a horrible experience. It broke my heart to have to poke her little fingers so many times a day in order to get a blood sugar reading. When it was time for her insulin injections I would have to chase her around the house, and hold her down while she asked why I didn’t like her anymore and why was I doing this to her.
I remember one night she finally took her needle with no fuss and I told her she was such a brave little girl, she looked at me with tears in her big brown eyes and said but Mommy, little kids shouldn’t have to be brave. How right she is, the grown ups in these children’s’ lives are the ones who need to be brave and stand up and fight for a cure for this disease.
I have other first occasions I shall always remember, like the first Christmas after being diagnosed I was helping Kendra write her letter to Santa and she said the only thing she wanted was not to have diabetes anymore. I remember getting her ready for her first day of Kindergarten, all her little friends were picking out backpacks and crayons, Kendra was learning to test her own blood sugar as the Canadian school system has no nursing staff available. I remember having to tell Kendra I did not know when she would not have diabetes anymore, she used to say I won’t have diabetes when I am 5, then it was when I am 6, then at 6 years old she said she thought she would have diabetes until she got to heaven. I am confident with funding and a lot of research Kendra will one day know a life without diabetes.
Financially this disease can be devastating to a family with no health insurance. We do without a lot of things to make sure Kendra gets what she needs to live a long, healthy life. But there should be programs in place to make sure these children without insurance can still get the supplies that are necessary. Insulin pumps for example make a big difference in the control of diabetes, but cannot be afforded by all. Research has shown that insulin pumps greatly reduce the risk of complications later on in life. Should each child not be entitled to the same chance?
Thankfully, Kendra has now accepted her diabetes and deals with it so well. She is a beautiful, funny, smart little girl who loves to swim and take hip hop classes. Kendra will not let diabetes stop her from doing what she wants in life.
Please remember Kendra and all of the other children like her. Let’s make diabetes a thing of the past.
Diagnosed in August 2006. A true hero like all of our kids with diabetes--young and older!
LeahIn 1987 when I was 22 years old, my life changed forever. I was diagnosed with Type 1 diabetes. I could not believe it. I spent many years in denial. I do not like needles and the fact I was supposed to take them every day terrified me. I took enough needles to keep me alive, but not enough to gain optimal control on my blood sugar levels. I did not check my blood sugar levels on a daily basis, as I did not want to know what they were. I was very fortunate not to get any serious complications. As I grew older I realized I needed to take control of my life and started on 2 injections per day and two different types of insulin. My blood sugars were like a roller coaster. They could range from 1.4 mmolL/L to over 30.0 mmoL/L. I was sick so often I was unable to work. I was then told that I needed to go up to 4 injections a day; this devastated me again. Needles were so painful to me I just did not know how I was going to manage. I got a rash & a lump every time I took a needle.
In January 2004 I was hooked up on to a Mini Med Medtronic 508C Insulin Pump. That was the day my life was given back to me! Wow what a difference! I faithfully check my blood sugars up to 10 times a day. I have very good control on my blood sugars. Before the pump my A1C (average blood) sugars were at 11-16 now they are at 6.5. (Normal blood sugars should range between 4.4-7). I have energy for my family, which consists of my husband of 19 years, 3 children ages 14-22, & 1 foster child with Fetal Alcohol Syndrome that I have had since she was 3 days old (now 3), and 1 grandchild. My 14-year-old son has Prader-Willi’s Syndrome. It was very hard to manage my diabetes and to also take care of a child with a disability, but that has definitely changed since I have been on the insulin pump. Not only have I benefited tremendously from this pump, but my family as well.
I do not have as many low to high blood sugars. I only take 1 needle every 3 days versus 4 a day, that means only 122 needles instead of 1460 needles a year.
The pump is about the size of a pager and consists of a micro-computer and a reservoir of fast-acting synthetic insulin that is connected to the body through a narrow tube inserted under the skin via a removable needle. The pump is programmed by the user to deliver a low "basal" rate of insulin throughout the day and night, as well as "bolus" amounts to deal with higher blood-sugar levels around meals.
Because a pump closely copies the function of the pancreas, it creates freedom for the person wearing it. This may sound like a frivolous reason to some one who does not have diabetes, but to some one who has had to eat meals on a ridged schedule, who must have a carbohydrate snack every night before bed, who occasionally wakes up in a soaking wet sweat at 3 a.m., who faces high blood sugars every morning, who suffers from lows, who feels restrained from eating spontaneously, or who simply wants to sleep late on the weekend, wearing a pump can mean a pleasurable life again! Having Diabetes should not end the ability to live a life as close as normal as possible!
INSULIN PUMP THERAPY IS THE BIGGEST AND MOST POSITIVE STEP THAT I HAVE TAKEN IN THE 17 YEARS OF HAVING THIS LIFE ALTERING DISEASE DIABETES USED TO CONTROL ME!!!! NOW I CAN CONTROL MY DIABETES!!!!
LiamLiam is eight years old. He was diagnosed with Type 1 Diabetes when he was 2 years old. When he was diagnosed his blood glucose level was 42mmol/L—a normal range should be under 7. He weighed 11kg and was given 12 hours to live.
We thank God every day that Liam did live. He spent the next two weeks in the hospital regaining his strength while I learnt as much about diabetes as I could in that short period of time. When it was time to leave the hospital I was terrified. What if he went low? Could I really keep him safe? How would I remember everything I had learnt?
It was a rough road. When we first came home we were all outside. Liam was whiny and miserable. I assumed he was just being two and told him to wait just a minute and we would go inside. When I turned to look for him again he was passed out in the middle of the yard! My heart stopped as I picked him up in my arms and raced in the house to get him some juice. Thankfully he managed to drink and was back to his usual vibrant self. I shook for hours. From that moment on if he was miserable or fell asleep, the first thing I would do was test him. Our motto for bad behavior became “you had better be out of range but that is still no excuse!”
When you are two, you don’t understand that you have to eat because you have insulin injected into your body that needs to be “fed”. When you are three you still don’t understand having to eat when you aren’t hungry. You don’t understand why you are poked and prodded countless times throughout the day. Liam rebelled by vomiting. Meals could take over 2 hours to be eaten and would involve at least one trip to the toilet to throw up the small bits he had in his stomach. I would be holding him up as he vomited and was passing out at the same time because his blood glucose level was plummeting do to a lack of food in his little body.
Eventually Liam learned to live with diabetes but life for him is much different from his peers. On school days Liam is woken up by me lancing his finger to test his blood glucose level. He then sits down to a carefully weighed breakfast. He uses an insulin pump now so he waits for me to tell him the total carbohydrate value of his meal so that his pump can help us determine the amount of insulin he will need. Once the insulin is “delivered”, Liam goes about the normal routine of getting ready for school.
At school, he will hear an alarm at about 9:30. This will remind him to test his blood again. Sometimes he will ignore the alarm. Sometimes his teacher will forget to remind him to test. These are dangerous situations as he may need food or insulin but does not know it. Before recess at 10:30, Liam will test again. He is in grade 3 now so he will give himself insulin for his snack. I send him with two notes that tell him exactly how many grams of carbohydrates are in his snack as well as what the pump should say when it asks him if he wants to deliver the insulin. His teacher is again to help oversee this but sometimes she gets busy and forgets. If Liam goes outside on the playground at recess, he will test his blood again when he returns to class. The fun of running and chasing his friends may leave him “low” and he will need to have some extra glucose right away.
At lunch time the routine is the same—test, eat, administer insulin. If they go outside, again he will test when he comes back in. If he is “high” before he eats he will decide if he needs extra insulin or not. At age 8 he is already very good at knowing how much glucose his body will burn naturally when playing and when he may need the help of extra insulin.
Liam will test again before and after gym class and once before he leaves the school grounds. If he is out of range (too high or too low) after school, I will have to go and pick him up as the bus ride could be dangerous.
When Liam gets home, we discuss his day, his homework and his blood glucose levels. Did we get it right today or do we need to make changes?
Supper is the same routine—test his blood glucose, measure and weigh all of his food, calculate the amount of insulin required. Liam will get to play for a bit and then its time for homework. Before doing his homework he will test. If his blood glucose is too high, he may have blurred vision or a headache and not be able to concentrate. If his blood glucose level is too low, his brain is starving for food and again he cannot function.
Before bedtime, it’s a snack which means test, eat, and insulin. I will test him two hours later. If he needs some glucose because his blood is “low”, I will feed it to him in his sleep. If you put a straw to Liam’s lips he will automatically suck. If you put food to his lips, he will begin to chew. I will then test Liam at least two more times throughout the night. Blood glucose levels can fluctuate at any time. Not to check on him during the night could lead to lethal consequences.
All of this Liam takes in stride for the most part. He complains that life isn’t fair now and then. But when you ask Liam about his dreams they are very simple--he wants a big house with lots of animals. He is going to be a vet and will work from home. He wants to make a decent amount of money so that he can afford to have his quad and skidoo close by. He also expects that his diabetes will be cured. The pump he now calls his “life” will be a memory. It will be something to look back and remember when—remember when I was different? Remember when mom fed me in my sleep to keep me alive? Remember when I couldn’t attend gym class because my blood glucose levels made activity dangerous? Remember when I could squeeze my fingers and make them bleed without using a lancet? Remember when I could shoot blood across the table when I tested? Remember the sites that soaked 10 tissues before the bleeding would stop?
Please remember children like Liam. They look like everyone else on the outside but the things they must remember and look forward to are things no person should. Remember them when you look at funding for our health care system. Remember them when you look at the costs of diabetes supplies. Remember them when you look at tax relief and research grants. November 2005
Living with Type 1 Diabetes for Almost 40 Years (1967-2005)
When I was 11, a major event happened in my life: I was diagnosed with ‘Type 1 diabetes’. My doctor comforted me by saying that I wasn’t going to die (I had felt so sick that I thought I had a terminal illness!) and that I could stay alive, as long as I agreed to give daily insulin injections for the rest of my life....
To this day, people often ask, "How can you take needles? I could never do that!"... But, when given a choice between life and death, a daily needle sounded pretty easy to accept!
However, it is one thing to take insulin to ‘stay alive’, but it is whole different challenge to stay healthy for a lifetime while living with a chronic condition like diabetes! It didn’t take me long to realize that insulin was a great discovery...but it is not ‘a cure’, and it is not as simple as taking a daily vitamin pill (like many assume!). Insulin is a powerful hormone, and is only one part of the entire ‘balancing act’ in striving to maintain close-to-normal blood sugar levels*. [* The reason for maintaining normal blood-sugars is to prevent other horrible complications of diabetes--- like heart-disease, stroke, blindness, gangrene, kidney disease, and many other problems.]
Even though insulin did spare me from death, I have had many difficulties with my diabetes over my lifetime. I am very sensitive to insulin, thus I have experienced numerous ‘low-blood-sugar’ episodes --- I try to follow a daily routine, but if I exercise just a little more than usual, I can easily slip into a state of low blood sugar. If I exercise later in the day, I have to set my alarm clock to wake myself up during the middle of the night to check my blood-sugar (and possibly eat a snack, in order to prevent a low-blood sugar episode...as the effect of exercise lasts for many hours after the event.) If I eat a different food, make a slight error in the injection amount or the injection-site, or my mealtime gets delayed, or I get any illness, or encounter a sudden trauma---any of those can cause a serious low-blood-sugar-emergency. As well, the symptoms of my low-blood-sugar have changed dramatically over the years, too---much less obvious now--- so I have to be ‘on the alert’, constantly testing my blood-sugars to make the food/insulin adjustments. I have had many close calls, which I have survived only because someone else was there to give me assistance. Before I drive any vehicle, I always check my blood-sugar level, to ensure that my blood-sugars are in a safe range...It takes a LOT of time to ‘check and balance’ constantly throughout the day.... Since my blood sugars can fluctuate rapidly, EVERY DAY presents new challenges to deal with. Some days, I just feel exhausted...and wish I could just take a holiday away from this never-ending struggle!
When I was diagnosed, doctors would often tell me that they were quite sure that there would be a cure within the next 10 years. Sadly, they were wrong; but there were many diabetics who counted on that ‘cure’, so they never seriously learned how to maintain ‘good’ (normal) blood sugars. Unfortunately, many of them are no longer alive, because their inadequate control lead to devastating complications and, ultimately, their lives were cut short.
...I’ve never forgotten my doctor’s advice that in those first few days after my diagnosis: he said the KEY to living a long healthy life was to keep INFORMED about my disease --- I have witnessed, first-hand, many medical advances and new synthetic insulin’s and drugs which can help a diabetic to achieve better blood-sugar control. The downside is that the costs are extremely high, and continue to rise.... Without medical coverage for basic needs like insulin, blood-testing monitors and testing strips, many diabetics do not have the tools to properly take care of their condition.... which, in turn, will ultimately result in much more costly health life-threatening complications. We (our medical system and our culture) must encourage and ensure that the person with diabetes learns how to keep their diabetes in ‘good control’ from the day they are diagnosed...
Research has proven that the best way of preventing serious complications for all diabetics is by keeping blood-sugars ‘normal’ at all times. (My blood sugars can rise and fall dramatically, many times each day, so this is NOT easy to achieve!) One of the best ways to achieve good control is by either taking multiple daily insulin injections (not convenient or easy for most people to do) OR by wearing an ‘insulin pump’. The pumps have been proven to significantly improve the quality of life and health for most users. I would love to try using one, as my specialist believes a pump could help me achieve more ideal blood-sugars!) However, the biggest deterrent for me is the high costs ($6000 for the pump, plus around $250 monthly, for the insulin and other supplies).
I would ask that you strongly urge the government to approve coverage of this effective diabetes tool---to ensure that serious, expensive complications are prevented with people who struggle to live with diabetes! The high cost of PREVENTING complications is much less than the enormous costs of dealing with complications. Of course, PREVENTING diabetes or finding a CURE is obviously the best way to save billions of dollars in our health system! Yet...at recent diabetes forums that I have attended, diabetes experts rarely mention the possibility of a cure anymore--- they just keep promoting new books, charts, ‘gizmos’, and ‘products’ that are usually very costly!
Though I have been fundraising for ‘diabetes research’ for over 18 years now, one of my greatest fears is that the big drug companies are making excessive profits from ‘diabetic customers’. I truly believe that ‘the dream cure’ will only become a reality if the research is done through government funded research, universities, and by people who truly want a cure to help the people they love who struggle with diabetes every day...NOT by big drug companies who only see diabetics as their way to gain more profit ---a tragic reality!
It is well known now, that in Manitoba’s population, diabetes has reached epidemic proportions...Money and time is running out!
Thank you for taking the time to try to understand the complex problems concerning diabetes.
MatthewMy name is Matthew. I was diagnosed with Type 1 diabetes shortly after my 23rd birthday. It was simply the worst day of my life. I had just completed over two years of military flight training and was with in five months of reaching my dream job. I was to be winged as a Naval Aviator. I can not explain the amount of time and determination it took for me to reach that goal.
I had recently been married in March of 2005. My life seemed to be a fairy tale. I had married my dream girl and was about to achieve my dream job and then I heard the words that I will never forget, “You have diabetes and you will never fly again”. In that one day I lost not only my chance to fly, but also my career in the Navy. I spent the last entire year of my life in a state of extreme depression. I have been trying to deal with this relentless disease while trying to find another way to provide for my wife.
I just want to wish all the best to anyway else out there who has to fight this terrible disease. The only thing you can do is wake up every morning and fight. I treat it like a never ending boxing match. Sometimes I win a round, sometimes I lose, but all I tell myself is keep getting back up. I also would like to thank all those who continue to work for the cure.
MelanieI am writing to you on behalf of my daughter, Melanie. Melanie is a beautiful, bright, and lively 7 year old living with type 1 diabetes. Melanie loves to dance and play dress-up. She also loves swimming, playing at the park, and just being a kid.
Perhaps if I just told you that she COULD NOT do all of these things, I would have your attention!
The reality is she could not if it were not for the many decisions we make daily to give her the correct amount of food and insulin each and every day. If food and insulin is not correctly calculated, Melanie would have a very poor quality of life. I recall when the endocrinologist explained to me what I needed to do to keep my little girl alive, I could not even imagine having to so closely monitor Melanie on a daily basis…..What kind of life was that? I cried my heart out when I thought about what a huge responsibility for her health we had. What if I made a mistake? What if I’m not there for her one day? What if she has to live with complications one day? We all live with what ifs every day….but as a parent, I have committed myself to provide the best care I can possibly give.
For Melanie …to ”just be a kid”… well, there was quite a lot she and her family had to learn to do to help manage her disease. To live a normal life, we made the decision this could be best accomplished by using an insulin pump to delivery her insulin. Since the smallest dose a needle could deliver of rapid acting insulin was .5 unit increments, that meant Melanie would HAVE TO eat in increments of 10g per .5 units when using fast acting insulin……not always possible….and she would often end up above or below her target blood glucose range of between 4 and 10 mmol. With a pump she was not so limited. After all the meal time wars, we didn’t consider using a pump rather than force feeding Melanie to keep her from having hypoglycaemia a “life-style choice!” Melanie did not choose to have diabetes type 1 after all. Also injections were too unpredictable….what worked one day would not work the next. And if Melanie decided she did not want to eat (carbohydrate) it would become a life threatening situation if she had already received her injections. Both food and insulin, and the correct amounts had to be given.
Early one morning, when Melanie was five, she had a seizure caused by her hypoglycaemia. It terrified us. She did not have the motor ability to swallow….thank God she was able to call out for our help. Our best laid plans for an emergency were put to the test and we were running around frantically looking for emergency icing sugar. Finally we rubbed the inside her cheeks and gums with maple syrup and she recovered. After that, we felt injections were too unpredictable and dangerous for her….we had to get a pump. We worried if she had too many lows that it could possibly cause some brain damage…..worse if she did not wake from a low for treatment, she could go unconscious, into coma or die.
We realized then too that there was much more to managing diabetes than we thought…..and we would not be taking any unnecessary chances with our beautiful Melanie!
I am already very disappointed that not everyone in Canada has the option of insulin pump therapy. But the current amendment to change the income tax act that will not be taking into consideration the amount of thinking and planning and calculation required in the meal planning of type 1 diabetics as medically necessary is ridiculous! I cannot emphasize enough the importance of proper balance of carbohydrate and insulin in any type 1 diabetes person’s life. Even when one feels they have figured it out, there are other considerations to be made taken together with food and insulin intake, such as illness, stress, excitement, and exercise……no two days are exactly alike! Melanie’s requirements changed on a daily basis, as does her food, as does her activities, as does her health….. therefore as does her insulin and food requirements. Melanie brings a complete list to school everyday of each item she eats for snacks and lunch, and the corresponding carbohydrate and bolus information. Currently she still requires supervision to ensure that she boluses the correct amount of insulin for each item eaten…..although she can test and give boluses herself.
Let me demonstrate. Currently she receives 1 unit of insulin for every 20 g. of carbohydrate she eats. (We visit the dietician periodically to discuss food and also to ensure that her insulin to carbohydrate ratio has not changed.)This is called her insulin to carbohydrate ratio. If she eats 10 g. of carbohydrate, she receives a bolus of .5 units of insulin. However, if she were low (below 4.0 mmol.) ….perhaps she had gym class….she would not receive any insulin….but perhaps even more carbohydrate (15 g. of carbohydrate is a TREATMENT FOR HYPOGLYCEAMIA) Also, she has snack at 2 p.m. at school, and she usually tests herself before she walks home from school at about 3 p.m.….and although she may test and be perfect before she walks home, the additional exercise walking home from school may require additional carbohydrate so that she doesn’t require a “rescue snack” on the way home. One has to consider how much she last ate, calculate the amount of insulin in the bloodstream and “still working” that will bring her blood sugar down……(roughly a third of a bolus of insulin works per hour…..for three hours, when using rapid acting insulin only)….only then can one decide how much carbohydrate is appropriate for the trip home.
When eating food and you have good diabetic control……managing diabetes is about injecting the correct amount of insulin. When you don’t have good control, and perhaps you are hypoglycaemic, then managing diabetes is about consuming the correct amount of carbohydrate…….they go hand in hand in the treatment of diabetes! Type 1 diabetics are especially prone to hypoglycaemia since they must inject insulin……and that’s what makes calculating carbohydrates so important. One must “think like a pancreas”, since theirs is no longer working! Because life is not so predictable, neither is diabetes. Melanie’s “treatment for Hypoglycaemia” is a box of juice, cheese and crackers, or 3 glucose tablets.
Then we have her basal insulin where Mel receives .3 or .2 units per hour according to how I have programmed her pump. This basal rate may work for a while, but must constantly be re-assessed to consider making incremental changes when and where needed. A record of diet and insulin dose, activity, illness or stress must also be kept in conjunction before any changes can be considered in order to search for patterns in case her needs have changed due to growth or if they are due to other reasons such as illness, excitement, etc. Put it this way…..one cannot consider making an insulin adjustment without careful consideration of the type of food, amount of carbohydrate it contains, and when it was consumed, and when the last insulin dose was received before one can make that kind of decision…..not to mention whether one’s current health or if exercise could have an effect on how it worked…..tricky huh?
Diabetes is not an easy disease to manage. This, by the way, is an understatement. Amending the law to not include time spent meal planning or “thinking like a pancreas” all day long as part of the calculation for time required to manage diabetes is simply quite wrong. Perhaps one day the technology will be there so that this won’t be necessary!
My name is Mikayla and I just turned two. On March 11, 2005, diabetes nearly took my life.
When I was 17 months old, I started having terrible tantrums. I screamed when Mummy picked me up and again when she put me down. I was always hungry and very thirsty. I wet through my blankets and clothes. Mummy thought I was having a growth spurt. I didn't have the words to tell Mummy my body was hurting all the time.
I felt so tired, I wanted to sleep all day. I was rubbing my eyes because I couldn't see. Mummy thought I had the flu and when my chest became raspy she thought "oh good, it's just a cold". Nothing Mummy did made my cold any better. It wasn't a cold. My body stopped producing insulin; my cells were starving and my lungs were filling with toxins from my body digesting itself.
When I was hospitalized, I was within hours of death. I spent one week in the hospital where the doctors and nurses worked really hard to make me better. I was very scared in the ICU and didn't understand why everyone was hurting me. But I had my green blanket and rubber boots which helped make me feel safe.
Now I feel better. When I eat, I guard my food with my arms. Everything I eat costs me one needle and a finger poke (those really hurt). So, you can understand why I have to protect my food. Some toddlers point at the cupboard when they are hungry. I bring Mummy a syringe. Mummy gives me at least four needles every day, sometimes more. Some days she checks my blood sugar 15 times. I try to sleep on my hands so Mummy can't reach me with the finger poker. She doesn't like to hurt me but she knows it is the only way to keep me alive.
No matter how hard we try, diabetes still makes me sick. I have had lots of emergency snacks to fix low blood sugar. I have lost consciousness once already because we didn't catch it fast enough. This is particularly dangerous for me because my brain is still developing. Every time my blood sugar goes low, my brain stops growing. Some mornings, I wake up soaked in my own urine because my blood sugar is too high.
My friend Isaiah has diabetes also. He hasn't even turned two. Our mummies have the same dreams for our futures as other parents have for their children. To reach those dreams, they work hard to keep diabetes from blinding our eyes and damaging our hearts, kidneys, and nerves. High blood sugar hurts our teeth and gums and makes it hard to heal the cuts and scrapes we get from everyday play. Six percent of people with juvenile diabetes under the age of forty die in their sleep every year. Nobody knows why this happens. Imagine how scary this is for our families.
Mummy asks you to please share my story. Knowing the signs and symptoms of diabetes could save a child's life.
Thank you for taking the time to read my story.
NatalieOur daughter Natalie was diagnosed with type I diabetes in March of 2002 when she was 13 years old. Since that day, our family life has taken on new challenges, moulding a new way of life. Natalie has by far, taken on the biggest challenge.
Testing her blood sugars at least four times a day, giving herself three to four injections of insulin, counting carbs, as well as maintain an excellence standing in the International Baccalaureate program at school is a 24-7 commitment. Since March of 2002, we have approximated 6,225 as the number of injections that Natalie has given herself. The reward for all of this "not so fun" hard work is that she has maintained a great A1C and is free of complications.
As of a month and a half ago, Natalie started on an insulin pump. She loves it! Being a reserved person who never seeks attention, she enjoys the fact that she can stay at the supper table to administer her insulin discreetly rather than go to the bathroom or her bedroom to give her injection in private. She also saves herself 8 injections as the site is changed every 2 days. The best part of this pump is that since she has been on it, her A1C has dropped from 6.9 to 6.5. She was very diligent before but it has helped her to tighten her control even more. A whiz at the computer like many teens are, she can download her info from the pump to the computer and it becomes a great way of tracking her own health and progress.
I feel frustrated when I hear people say "She must be one of those SEVERE diabetics" to be taking so many injections or being on a pump. On the contrary, I believe Natalie is" one of those" SUCCESSFUL diabetics who reduces her chances of complications with good control.
The saying "until you walk a mile in someone's shoes" goes for all those people who don't live with diabetes as well as for myself before 3 years ago. Being a nurse, I thought I knew a great deal on diabetes and much of it was not positive. Now, I realize how little I knew. I feel a sense of empowerment and encouragement in learning all I can about diabetes. The Diabetes Education Resource Centre for Children and Adolescents have provided such wonderful support and education to our family. Talking to people who are living our reality as parents of diabetics or as diabetics themselves, and who are succeeding, make me feel uplifted and positive about the future.
Being both a nurse and Natalie's mom has its up sides as well as its challenges. At times, I 'm sure Natalie feels my over protectiveness very annoying. What teenager doesn't find her parents annoying?!
Finally I know that my daughter knows that I love her from the bottom of my heart and am so proud for what she accomplishes on a day to day basis. She is a successful diabetic and our beautiful daughter!
Natalie's mom (Denise)
Type I Diabetes and our Family
In July of 1993, I became diagnosed with Diabetes at the age of 19 years. I was put on insulin while I was completing my third year of university. It was a major adjustment for me since I was away from my family at the time and didn’t have much support. Diabetes Education at the Health Sciences Center, along with a home care nurse helped me with my injections. There was so much I had to learn and change in my life. It was really too much for me to handle by myself, so I decided to drop out of university and return home until I could adapt mentally, medically, and physically. It was one of the biggest challenges in my life.
Unfortunately, I never did return to university full time. I found a full time job in Corner Brook, got married, settled here and had a family. Year after year I was adapting to my lifestyle being a Diabetic. In 2001, after two pregnancies, I started to become hypoglycemic unaware and my doctor, Dr. Murphy and Diabetes Education recommended Insulin Pump Therapy. So I was quick to learn about this new form of treatment and what it involved. I thought that it sounded wonderful! I couldn’t believe that I wouldn’t have to inject myself four times a day anymore. I started therapy with an insulin pump in April of 2002. I felt that it was the best thing that was ever invented. I began to have more flexibility with my life and with raising two small children, it made it a lot easier to take care of myself. For the first time in a long time I was happy with my health and actually felt my life with Diabetes was getting easier.
One month later, May 2002, my son Tyler, who was only 18 months at the time, got diagnosed with Diabetes. It was something that I wasn’t at all expecting. I had already tested my daughter, Sarah, several times with my own glucometer whenever I noticed she was eating too many sweets, complained that she was thirsty or was using the bathroom too often. But I had never tested Tyler. One day I noticed that Tyler was more thirsty than usual. Also he had a really bad diaper rash that wouldn’t clear up. He was a little more cranky than usual but I only blamed that on teething. One evening when I came home and checked on him while he was sleeping, I noticed that his diaper and crib were full of urine. I initially got mad at his father for forgetting to change him before he put Tyler to bed but he told me that wasn’t the case. He told me that he found Tyler to be a bit more thirsty than usual to the point that he would cry after he finished his bottle for some more milk. With that I grabbed my glucometer and pricked his little heal. The reading came up as “high” and knowing what that meant I rushed him to the hospital.
Tyler, getting diagnosed with Diabetes, was a major step back for me. I initially blamed myself and cried a lot. But knowing I took really good care of myself during my two pregnancies, I knew deep down that hereditarily there wasn’t much I could do about it. I just had to look after him the best I possibly could. The restricted life I had before my pump was now just beginning for Tyler. I knew that in time, when he was old enough to understand his condition, I would have an insulin pump for him also.
Presently, Tyler and I are doing wonderful. Tyler is now 5 years old, has just started Kindergarten and is adapting really well. He goes to a private Catholic school here in Corner Brook, Immaculate Heart of Mary School, where the class size is small and it is very family oriented. They have taken me on as a teacher assistant where I can keep a close eye on Tyler until everyone adapts to him. The staff is wonderful and have all grown to know Tyler really well. It was hard for me to pass over the responsibility of getting someone else to test Tyler’s blood sugars but the teachers did it willingly. I feel totally comfortable having him there knowing he will not get lost in the crowd and that all the staff are watching out for him. I have returned to university part time in hopes of becoming a full time student by the time Tyler goes to Grade 1. At that time I know he will be ready to be left on his own with his Teacher’s care. Returning to university is something that I’ve always wanted to do and now feel at liberty to do so. It is something that I have always wanted to go back and finish for myself and I am really excited about it.
Living with Diabetes is a challenge especially when you have more than yourself to look after. I live in a world with double the amount of carbohydrate counting, glucose reading log books, and insulin injections. I have to be that perfect example influencing exercise and healthy eating choices. I have been told that Tyler is very fortunate to have me as a mother knowing as much about Diabetes as I do. Unfortunately that still doesn’t make our lives any easier. For some mothers, their child’s first day at school was very emotional for them. For me an emotional day of separation will be the day that I see Tyler check his blood sugar for the first time independently or give himself his own injection. That day will be here sooner than I realize. On that day I will get that feeling back that I felt after I started on my insulin pump. I will be able to breathe with a sigh of relief and feel that my life with Diabetes is getting easier once again.
Robert and WyattMy name is Robert and I have been living with Type 1 Diabetes for 20 years. I was 17 when I was diagnosed and I am now 37. I was in peak physical shape when I was diagnosed, trying out for a professional football team. I was devastated and very angry. As I grew older I learned how to manage my diabetes and live as normal as possible. I have always hated the fact that you never get a break from this disease – just a normal day once and awhile.
At 29 my son Wyatt was born, and I was very happy. People said we looked a like and that made me beam with joy. My wife and I always wondered whether or not he too would be diagnosed with Type 1 diabetes, we were so similar in ever way. We thought perhaps one day when he was a teenager it may happen, but had hoped there would be a cure for it by then. Well it did happen, unfortunately it happened when he was 4 years old!
I knew he had it, but when the physician confirmed it, it broke my heart. I was crushed – now like me he would have to live with testing, insulin, needles, lows, highs, HbA1c tests and most of never having a day away from having diabetes. I felt guilty – would he never have had it if I didn’t? Did my genes give this to him? It was an enormous thing to have to come to terms with, but I knew I had to and that we needed to try and be as normal as possible. As normal as life can be when you test yourself four 4 to 10 per day, take insulin for every meal, and wonder if you should eat that or not with every morsel of food.
We have gotten on with our life, and Wyatt’s diabetes has become as routine as mine. The school is catching on to the “diabetes life”, we both play hockey and we look as normal as anyone. My wife, a sales rep still worries when she goes out of town. Leaving two Type 1’s with our 6 year daughter is still a scary thought – what if they both have lows at the same time? Who will take care of them? Will she remember 911?
We do very well with our diabetes lives, but we long for the day that do not have to worry about diabetes. We have been involved with the JDRF for that past 4 years. We are strong believers in finding a cure and fully support stem cell research.
ShayneI’d like to introduce my family – Rick (my husband of 20 years), Shayne (my 10-year-old son), and me. From the outside, we appear like a normal family of the 21st century – we have two vehicles, a nice house, two pets, both work full-time jobs, and we volunteer in the school and community. Once you spend a little time with us, however, you quickly find out that our lives are constricted and controlled by a life-threatening, chronic disease.
Just over two years ago, my son was diagnosed with type 1 diabetes. Shayne had been having numerous problems for several months. These included severe headaches, nausea, vomiting, stomach aches, violent mood swings, and wild behaviour. As yet, no cause had been found. Among others, investigations included CT scans for a possible brain tumour, family counselling for parenting issues, acupuncture for stress management, and restricted diet for suspected food allergies. Abnormal behaviours included threats of suicide (at 7 years old!), night terrors, and temper tantrums so bad that on one occasion a restraining hold was required. He was not growing well and we saw many doctors and tried many suggestions, but did not clue in to type 1 diabetes until May 2005.
For some unknown reason, one day the idea of juvenile diabetes occurred to me. I looked it up on the Internet and reviewed the list of symptoms – thirst, frequent urination, mood swings, weight loss or slow growth, nausea, headaches, etc. That day I phoned Shayne’s pediatrician and requested a test for diabetes. He suggested that because Shayne was very apprehensive of blood tests and I had a glucometer at home, I could test my son’s blood sugar levels myself and then call them in. The level of glucose in Shayne’s blood was too high for the machine to read! My glucometer could only read blood sugars to 33.3 mmol (normal range is 4.0 to 8.0). The test was repeated and an emergency call placed to the pediatrician.
The next morning, we had our first appointment at the Pediatric Diabetic Clinic. At this point, I was scared but still held out hope for a mistaken blood sugar reading. Unfortunately, they immediately confirmed a diagnosis of type 1 diabetes and Shayne received his first insulin injection within minutes.
My husband was working out-of-town at that time. It was a very difficult telephone call to make to tell him that our son was very sick and would be for the rest of his life. I can only imagine how difficult that 4-hour drive to the hospital was for Rick.
And so began our initiation to a life with type 1 diabetes. We now have to follow a strict daily schedule of blood tests, eating and injections. We have to get up at the same time every day and eat meals of the same amounts at the same times no matter what we may want to be doing. Outside influences such as exercise, stress, puberty, illness, and growth have to be factored in on a constant basis so that insulin doses can be adjusted to prevent the complications of either high or low blood sugars. Shayne can never be left on his own, and as babysitters aren’t willing to give injections, my husband and I can never go out together. Shayne’s blood must be carefully monitored many times a day and adjustments to food intake, exercise, and medication made accordingly. Our lives are no longer our own.
In retrospect, I wish for many things:
1. that common medical practice was to test children for diabetes when there is a family history of the disease;
2. that Shayne’s immunologist had warned us of the possibility as type 1 diabetes is an autoimmune disease;
3. that the public is educated about the symptoms of type 1 diabetes to watch for in their children; and
4. that government education campaigns distinctly describe the difference between type 1 and type 2 diabetes and do not refer solely to diabetes as a whole in their disease prevention campaigns. Type 1 diabetes was not caused by anything the victim did or did not do, it is not a result of poor lifestyle choices such as obesity or lack of activity, and there is no known way to prevent or cure it. This common misconception creates an atmosphere of blame and negativity surrounding the type 1 diabetic child – an addition burden that they could do without.
With all my heart and soul, I also wish that research would progress faster and that a cure be found in the near future so that my son and the many others like him could experience normal lives.
The following is my son’s own comments on his diagnosis and living with diabetes:
Since my diagnosis, I must have at least two needles every day, at least four blood tests every day, carry my glucometer everywhere, eat snacks in class, and if I don’t eat then I’ll have to get fed by IV. Sometimes I get low and I feel very sick – like I’m going to throw up, like car sickness. I feel almost the same when I’m high. I’m sick a lot and my blood sugar goes either really high or really low and I miss a lot of school, then I don’t get as good of grades and have lots of homework.
The worst thing about having type 1 diabetes is that I miss having food when I want, I miss going to birthday parties and eating at celebrations.
I would like everyone to know that it isn’t easy to live with type 1 diabetes – you have to have needles and blood tests and can only eat measured amounts of food. If your blood sugar gets too low you can die, if it gets too high you can go blind, you can get your foot amputated, you can have problems with your kidneys.
A cure for type 1 diabetes is important because I would be cured of this disease and so would lots of other people so everybody could be happier.
I want the government to learn about how it feels to have needles and blood tests – I want them to know how it feels to eat measured amounts at certain times – I want them to know how it feels to have people staring at you as you have blood tests and needles. The government tries to make people happy – if they funded research for a cure, they would make lots of people happy and might get re-elected because those people would vote for them.
SarahMy name is Sarah, and I am a 23 year old female residing in Winnipeg. Externally I appear to be a normal, healthy young woman. Nothing, however, could be further from the truth.
I was diagnosed as having Type 1 (formerly known as Juvenile or Insulin-Dependent) diabetes at the age of 2, a 21 year duration of this devastating disease. 21 years of abnormal blood sugars, labile swings in blood glucose levels (usually unavoidable) and unexpected (low blood sugar) seizures have finally caught up with me. I no longer feel like the healthy young person I used to be. I now suffer from uncontrollable blood sugar fluctuations on a day-to-day basis, even with an intense regime, 5+ injections, 8-12 blood glucose fingerpicks, and a calculated meal plan daily.
Even though I am doing everything possible to keep my blood sugars stable (imagine being your pancreas 24 hours a day/365 days a year) I still cannot. Although I am terrified of becoming blind, having kidney failure, an amputation, and/or a heart attack at the age of 30, I am equally overwhelmed by the daily feelings of fatigue and illness that are slowly robbing me of my dreams.
Type 1 Diabetes is an autoimmune disease in which the body's immune system attacks the insulin producing beta cells in the pancreas. Type 1 diabetics have little to no insulin production, and must rely on exogenous injections of the hormone to keep themselves alive. This system does not even come close to the preciseness of a human pancreas. I prefer to think of it as surviving and not living.
My Name is Stephen Steele
and I am the first and so far only, Airline Captain in the world who is
allowed to fly transport type aircraft while taking insulin to control
my diabetes. But, that is getting ahead of myself, let’s go back and
see how all this happened.
It was May 1986, as an airline pilot with one of
Now I needed to find another
career. I attended
of my unique skills as a former airline pilot and lawyer I was offered a
My family including my
wife, Dee, and our two sons loved
We thought that I had
found the perfect career, but then, in a groundbreaking move in the late
The regulators are ensuring that the
possibilities of subtle or sudden incapacitation from hypoglycemia are
safely and properly dealt with. Transport
I just couldn't resist the chance to get back
into an airplane again and so we packed up and returned to
The first insulin-dependent pilot to be
are now a handful of insulin-dependent commercial airline pilots in
I use an insulin pump to control my diabetes and I test my blood glucose at least 10 times a day while flying. I need to maintain excellent control of my blood glucose, and two doctors monitor the levels monthly. I also have an airline physical twice a year.
I am hoping that other countries will eventually
relax their now outdated restrictions on flying while using insulin.
So far, I am working with pilots in the
I now try to keep the message alive and to speak publicly about how diabetes changed my life for the better, giving me eight memorable years in Asia and steering me into diabetes education, encouraging other diabetics not to take no for an answer. Having diabetes has enabled me to do a lot of things I would otherwise not have had the opportunity to do.
My name is Tammy. I am 26 years old. I have been dealing with juvenile diabetes since May 29, 1991 Diabetes has had a huge impact on my life, even 14 years later I am still learning about this serious illness and the horrific damage it can do to a person’s body. I myself have felt the wrath of this disease, from losing perfect vision so I know have to wear glasses to having a crusted 9” purple lesion on my leg and if you look at it closely you can see the blood vessels on my shin. Every day I feel it is a chore to wake up just to take a needle, and in the evenings I will find excuses to stay busy if I am at work just so I do not have to be bothered. I do not like the fact that I can not just get up and go but I have to sit there and think if I have taken my insulin or not.
Growing up with this disease my parents tried to do the best for me, but buying special items in the store was extremely expensive. Medications for diabetes are costly, I now realize that having diabetes is not my fault, but it almost seems like I need to be rich so I can afford to stay alive. As a child with diabetes I always had to control what to eat and I had certain times to eat as directed by my doctor’s and even today as a young adult I am constantly going to doctor’s appointments, whether it is an eye doctor or an endocrinologist doctor.
I have several fears about diabetes and what it could do to me, such as I am terrified of going blind, losing my legs, and the thyroid problems that occur with having diabetes, everything that other people who do not have diabetes take for granted.
ValerieI was diagnosed with type 1 diabetes when I was 11 years old. My family and I were TOTALLY devastated. I am the oldest of 5 children, my father was the sole income earner, a sales man, it was tough. Later my brother was also diagnosed with type 1 diabetes.
This was in 1965. My Dad had some insurance but we shopped around for the best price for all the "stuff" that was needed to keep the 2 of us alive and mostly out of hospital.
The family made some changes, like no desserts except fruit, eating "on time" and seeing the doctor regularly.
Naturally challenges arose with "control" of blood sugars and teenagers to say nothing of the limited knowledge of that time but my parents (mostly my mother) prevailed in promoting good health practices.
I eventually became a degree nurse when it wasn't very common but how could a diabetic work nights and regular ward work???? I went into public health nursing and eventually became a diabetes nurse educator. This has worked out very well for me and my "clients" feel I can relate to them and I can!!!!
I had 2 fairly healthy pregnancies in 1979 and 1981--- its hard to believe now that things went as well as they did things were so archaic in those days with 2 shots of insulin a day and self blood testing JUST starting (My husband and I had to teach ward nurses how to do it).
Over the years things have changed sooooo much.
I started off with one shot of insulin a day and urine testing from 1965 to about 1977.Then 2 doses of insulin a day became "normal". Self-blood testing started about 1978. After the DCCT study ended multiple daily injections of insulin became the way to go. This also meant many more low blood sugars and for some people more trips to the hospital to say nothing of the total inconvenience of all the shots and routine.
I could include MANY problems my family and I have encountered over the last 40 years of living with diabetes but this is not my autobiography!
I've been extremely lucky (that's all it is) in having survived this devastating disease as well as I have.
I'm 51 years old now, I take more medicine than most people my age, and I work full time at a very good job. I'm hoping to retire within about five years but worry about all my medical expenses after that. I've been on an insulin pump for about 4 years. I love this method of insulin delivery BUT it’s very expensive. I joke that I may never be able to retire because I need to keep money coming in to pay for my diabetes supplies. I hope this is only a joke but fear that its not. Very few people on insulin use the pump because of the cost even though it is at this time the most physiologically like a pancreas. These little pumps cost $6 to 7,000 plus an additional $200 to $300.00 a month on supplies. The "patient" must continue to be diligent in managing the blood sugars by testing, calculating carbohydrate/insulin ratios and much more.
I'm amazed anyone actually manages diabetes at all----we're all forced to be a little crazy.
My goal is to live long enough to become a problem to my children but with diabetes I'll probably die at work trying to keep a head of my diabetes expenses!
If you would like to add your story to our page please send along your 1-2 page story and a letter from you stating that Diabetes Advocacy has your permission to use the story.
Other Faces of Diabetes
Canadian Country Star George Canyon George performed at the www.childrenwithdiabetes.com Friends for Life banquet in Orlando Florida July 2007. His green bracelet showed those around him that he too had Type 1 diabetes just like the children who were wearing them.
With kids at "Meet and Greets" before concerts!
Canadian-born, University of Nebraska-Omaha Defenseman, Rob Chappell has had Type 1 Diabetes since he was 8 years old. Read his story in CollegeSports.com
Scott Dunton is the only person with Type 1 diabetes on the US professional Surfer tour. He was diagnosed in his early teen years and struggled to accept his diagnosis before turning it into a motivator. He no longer allows the word "can't" into his vocabulary as he continues to live his life to the fullest doing what he enjoys while maintaining his health.
Mike Fisher was diagnosed with Type 1 diabetes at the age of 19. He is a member of the National Adapted Snowboard Team. "I lost a leg in a motorcycle accident and I have Type 1 diabetes, but that doesn't stop me from snowboarding!"
Canadian Olympic Rower, Chris Jarvis www.insulindependence.org
NHL Hockey Player Toby Petersen
is a world class mountain climber from Quebec Canada
who was recently diagnosed with Type 1 diabetes. His motto of make the
most of your diabetes, make the most of your life, has seen him climb
Mt. Kilimanjaro in 2006 as well climbing to the top of Mount Everest.
Elliot Yasmin of American Idol fame has performed for the Friends for Life Conferences.
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