Those of us who were diagnosed many years ago were "ticking time bombs", but some of us survived and are doing very well now, without serious complications. Most type 1 diabetics had terrible complications back then, and many died. That is why our life expectancy was not good. Two doctors told me in the 1970s that I would probably not survive beyond my 40's. Now I am 70 and very healthy. It seems like a miracle sometimes.
My parents did not have a clue in caring for me. There were no books on the subject that would have helped. The doctors knew nothing that helped, and there were no meters or pumps, etc, available. Test your urine on the stove, poke yourself with the insulin from a pig, and pray to live another day. My mother saw that certain foods made me sick. It was high blood sugar, and it made me feel nauseous. We learned that I should eat small portions of pasta, potatoes, breads and even fruit. It was all trial and error, with no guide to help us. Maybe it was good genes that we survivors possessed, maybe it was the C-peptide in the animal insulin that protected us, there is no way of knowing. Why were some of us spared, and others not?
My parents would not allow me to participate in gym in school, they limited me in many ways, and thought I should not go to college. I was so "brittle" and they saw me have many hypos and seizures. They had no confidence in my ability to lead a normal life. I developed a persecution complex and had very little confidence in myself. I defied their authority and went to college for 6 years, married and had two kids, became a college professor and led a normal life, accomplishing almost everything I wanted to do. Every step of the way I doubted that I would be successful in my attempts. I hesitated, but I forged ahead, with good results. That lack of self confidence will always be part of me. Even when I am successful at something, I feel I should have done better, and am somewhat disappointed in myself. I think that my parents' lack of confidence in me made me this way. I do not blame them though. I would probably have done the same thing, if I was in their shoes. They had no guide or advice to help them and they did the best they could. I loved my parents very much. They have both passed on, and I remember their love and kindness. I have no ill feelings or resentment of any kind. Time marches on, I want to see how long I can survive without complications.
What do the rest of you have to say about your parents and their dealing with your diabetes?
Thanks Richard. It’s always a pleasure to read some of your story. By the way, I read and loved your book. My parents were great also. Being diagnosed in 1964 we did not have the many luxuries for diabetes care that are available now. They did the best they could with what we had. My mother watched over me very closely, but I still learned to give my own shots and do my own testing. Even up to her passing this past March I think she worried about me too much. But, she would always say towards the end that I have taken such good care of my self thru all these years. Little did she know that I did not always pay alot attention to my diabetes. Sure I would always take my insulin, but not always test and eat the good way. I am very lucky that I neither have terrible complications. I did have a triple bypass surgery done in 1997, but that is also generic. I believe that my lack of complications has alot to do with genes. I love and appreciate my mother and father for watching out for me especially from the ages of 12 thru 18 when I left home to start my own married life.
I was diagnosed at the age of 22, married with one small baby. My parents did not believe me and thought I was just acting up for more attention!. I was an only child and probably spoiled but I tried not to “act up” due to health issues and I had some minor ones as a child! It was difficult for awhile but after a few years they apologized for doubting me. Knowing what I know today, I believe that I had pre- diabetes as a teenager.
I’m 44, I was diagnosed at 11 or 12, I don’t remember. My mom announced it was MY deal and MY life and I was the boss of it. I love this attitude, and if I was to have a diabetic child, that’s exactly what I would do. I was not permitted to NOT take PE, or any other class. I’ve never been allowed to not be normal. I’ve been rather surprised at all the codling that goes on on this forum and I’ve had to be careful not to answer both diabetics and parents of T1 asking them what the heck they are up to. So far I am complications free. I have sore joints, as did my dad, I have to wear glasses as of a couple of years ago, but that’s likely due to turning 40, not being a diabetic.
The pump was the best thing that ever happened to me.
The only thing in my life that I haven’t done due to diabetes is scuba diving. I’ve always really wanted to, but the changes in blood sugar caused by the pressure made me decide to go white water rafting instead. I’ve hiked across the grand canyon 4 times (taking 3 days to do it), I’ve camped up in the Cascades, I went to France for a year when I was 15, I’ve ridden my bike in a few century rides (100 miles), I did the Seattle to Portland ride in 2 days a few years ago… I hate to sound like a commercial, but just do it.
A bigger hindrance to me than the diabetes is that I’m overweight. My mom and her entire family are obese and my dad and his entire family are T1, I got both. My weight has seriously been a problem, and I blame it for my joint pains.
So, my parents were wonderful, and I think perfect. They gave me the tools I needed, then ignored my T1, it was never an issue for anything at any time.
That is great you did so well! See? the doctors aren’t right about everything.
Well, I am 40 and I am only six months in genetic T2. My parents are older and have there own health problems but I think they feel guilty that this happned to me. I was a mess when I was diagnosed. I had no job, no insurance (still don’t), in a relationship and living with a unsupportive boyfriend, just declared bankruptcy. I had no way to pay for any of my new costs. So my mom told me to move back home and they would help me pay for things. I can’t count how many times I broke down and cried myself to sleep and I remember one time my mom said “I wish I could have this instead of you.” and I said “No you don’t”. No one else in my immediate family has diabetes - although my dad you would think should have it because he has a big belly - I didn’t I thin and I have always been thin and followed a healthy diet. But I got the bad genes. I got the short end of the stick even though I was the one who was the health conscious one in the family. I have few other relatives who have it -mostly women. I think we all got the same genes.
So they have helped me out, I dont’ know what I would have done otherwise. But support wise, since they are not diabetic and they don’t eat the same diet as me, I am still on my own. It is hard to be strong when you don’t have many people to talk to about it.
“It is hard to be strong when you don’t have many people to talk to about it.” Just think of the alternative! We have to be strong to survive. The forums are a great place to share and talk.
My parents were amazing my father is a ER doctor so the medical part he had down but he sure as heck had a hard time with the emotional aspect of it that is where my mom was amazing. I have a twin sis and she too has type 1 and my mom took it all in stride she packed lunches popped into school to save the day when we had a diabetes issue. she held us when we were sick and fixed our lows and highs. out of my whole diabetes team my mom was the star because without her I would not have gotten this far. she never told us we could not have something instead she gave it to us in moderation. she told us we could be anything and do anything we didn’t need to let diabetes stand in our way. She made hospital stays bearable and ensured we were apart of our diabetes care. I don’t it is possible for a diabetes mom to over do it with a diabetes kid but my mom never did. I love my mom
My mom was very involved, she was a nurse and had cared for my T2 grandparents (all 4 of them). My dad was at best disengaged and more accurately I think he felt I was defective and he would have rather not been reminded of my weakness. Oddly enough, I had a cousin who was diagnosed at T1 at 5 and that was somehow a more sympathetic case. it was probably more sympathetic because it wasn’t incumbent upon him to support the new insulin habit and all it’s accoutrement. They split shortly after the diagnosis. I don’t think I had anything to do with that since their relationship was dysfunctional before the dx. My dad later developed T2 and he was firmly in denial until he died in his 70s. Even with my years of neglect and bad behavior I managed to get to this point with some background retinopathy that has since stopped and a bit of kidney damage that has been reversed. I believe that I was blessed with some very hearty genes and a robust constitution. When my dad did toss of this mortal coil, he had evidence of scar tissue in his brain from several significant strokes that should have dropped him like Elvis. But, like a Timex, he took a lickin’ and kept on tickin’.
My mom said the same thing when I was diagnosed. At this end of it, 33 years in, I wouldn’t have wanted her to take this from me. I might have taken the easy way out if it had been offered when I was younger, but now I realize that this is my gig and it’s my responsibility. I had my share of the “why me?” and all that, but when I realized it was the luck of the draw, I kind of got over that. “Why” wasn’t a useful question and it didn’t have an answer. It took me a while to come to that point but once I did, I was able to make a great deal more progress in my self-care.
I was 2 when diagnosed in 1976. I was just told that I acted up and was in a coma for a while. I remember peeing on the chemstrips and my mom trying to make me exercise, and of course me not wanting to. I don’t remember knowing why I felt icky, or them talking a lot about my disease. My mom and I no longer talk, but my dad occasionally emails me to see how I’m doing. He lives in Texas. Unfortunately I have complications like heart disease, frozen shoulders and I have hypo unawareness, which caused an accident that I got into and now have a trach. Good luck to you!
I was 17 and it was my senior year in High School. Diabetes threw me into Adult Hood very quickly. I quickly realized that I needed to get a job and get insurance in order to pay for this disease. I really do not believe that my parents really understood my Diabetes or what was expected from me for self management.
They were always concerned about my survival, but they did not know how to offer support, example: tell me what to eat, take your insulin, did you excersise kinda stuff. I also had a Dr. that told my parents about the poor survival rates. That had to be so fearful for them… Now when I go to visit my 84 year old mother in Florida she asks, “How is your Diabetes doing”. I answer, “Fine Mom, I am doing good”. Thank God I have survived this disease so that she will not have any worries.
Richard I so enjoy these types of discussions. I hope that all our friends on Tu Diabetics have the chance to read our survival stories. Thanks for sharing.
Thanks to all of you who have replied to this discussion! I have enjoyed reading your stories. I posted this discussion on four other diabetes sites, but there have been at most two replies on two sites, and none on the other two. I wonder why it is that way. Some of those sites are much bigger than Tu. I can depend on members here on Tu to come through and make these discussions interesting and very worthwhile.
“Every step of the way I doubted that I would be successful in my attempts. I hesitated, but I forged ahead, with good results. That lack of self confidence will always be part of me. Even when I am successful at something, I feel I should have done better, and am somewhat disappointed in myself. I think that my parents’ lack of confidence in me made me this way.”
My parents are similar to this in general (not because of my diabetes but always were). Neither of them went to college and neigher did my brother. I have my bachelors, half a masters, certification and a vocational degree (not that any of these are helping me get a job right now but…LOL!). I really don’t believe my parents ever supported anything I did because they are not risk takers themselves and they still aren’t. Of all the things I have accomplished (and I have accomplished all of things that I had, up to this point, wanted to do except for new goals) they only once said they were proud of me and they put it in a card. Before that when I told them things like “I want to do this someday”, their responses were always something like “You can’t do that because you have to be rich to do that or you have to be male or or you have to know someone to get a job there or you have to be something, something”. And guess what? I did it!
I am like you. No matter what I do or how well I did it I think still it is not good enough. Not because i am worried they will not approve (I am way past that because they never do) but because when people close to you don’t give you any support or encouragement for the things you do, it is almost inevitable that this will effect you, no how much of a ambitious person you might be. Even when we try to ignore these lacks of supportive and try to convince ourselves it doesn’t matter - it does and it will always effect us in some way.
Richard, I came across my mother’s bible today and in it I found the date her daddy gave it to her. It was in 1944, the year my mom and dad were married. I just realized that they only had twenty years together, and with us kids before I was diagnosed and they had to bring diabetes into our lives. There were two pages tucked inside telling the symptoms of Reactions and Diabetic Coma. I know these were always a huge concern to especially my mother. She would often bring up stories of a couple different reactions. And I remember both my parents saying why couln’t it had happened to them instead? We were/are a strong family that did/can deal with what life deals us. I think that also has helped to keep me serious complication free.
Reading your post, I pictured a ‘composite’ of a person made up of many many people I know, both with and without diabetes.
I would just like to say it is because of people like you that I love life!
Thanks for the share.
I am proud of you as a ‘human being’.
I have never asked “why me” because I was diagnosed later in life (28 yrs.). I have always known that there were kids with this disease and just have a lot more to struggle with than I ever will. And I have alway had respect for the parents. But it wasn’t until I came here to TuDiabetes and seen videos and heard stories (like yours) that convey the dedication, love and endurance that parents of children with diabetes go through. It gets me EVERY single time.
When I was diagnosed back in 73 I was told I would never live to see 30 and if I did I would have all kinds of complications.
My dad decided I was “spoiled” but my mom took it in stride and always weighted out my food only giving me bitsa and always counting the calories in a serving. And NEVER giving me any more that that. (as most of us from that time remember they counted calories not carbs then) no sugar at all and that dadblammed saccarion. HATE THE IDEA OF IT NOW! OH AND DON"T FORGET THE TAB! YUCK! My mom always made it her mission to take on the diet. My dad? He just looked at it like I would die and give him no g-childern. Not even worth thinking about now but it left a big scar on my life that’s for sure. Now there so much more out there to help ppl and I think every newly diagnosed diabetic should be proud of what us older diabetics went through so they would have it so much eaiser now.
Before that when I told them things like “I want to do this someday”, their responses were always something like “You can’t do that because you have to be rich to do that or you have to be male or or you have to know someone to get a job there or you have to be something, something”. And guess what? I did it!