Contemplate, Relate, Educate - share your perspective!

1

a friendly educational opportunity

This is directed at all types of diabetics - 1, 2, 3, etc.! I want to hear from you about what you wish others knew about your struggle. Make it personal - about your OWN struggle. Please attack no one else’s. Read what others write. Respond ONLY in the affirmative, supportive way that we respect here at TuD. Perhaps this will help us collect thoughts for the diabetes handbook project!

This T1’s Perspective

  1. I actually can’t eat anything I want and just take insulin. Insulin dosages are imprecise at best. I must restrict my carb portions for good control, just like you. When I eat something that’s a poor choice, I suffer for it, too. Sometimes immediately. Often all night long. Yes, I can eat cake. No, I shouldn’t. Yes, there are T1s who make poor dietary choices. Just as there are Type 2s who do the same.

  2. Sometimes I do want sympathy for having been diagnosed with a chronic disease as a little girl. I didn’t ask for the sympathy then, but I sometimes feel the lack of respect for it now and wish I had taken advantage of that then. I wish selfishly that more people knew how hard it was. Demanding that level of responsibility and micromanagement from a small child or a teen and making her listen to the stories about how she’ll never have kids or she’ll lose her toes… Grant me a little pity party now and then. That was rough. Please don’t tell me to get over it. Of course I need to get over it. If I were over it, would I have come to a support community?

  3. If I don’t test 10 or more times per day, and sometimes even though I do, I can still spend much of the day low or high. I am fortunate enough to have both a pump and a cgms, and in-range blood sugars are STILL a pipe dream most days. I still test 6 or 7 times a day, even with a CGMS.

  4. I know a woman who died in her sleep of a low. Many T1s are scared of this nearly every night, which is why some fight so hard for CGMS and alert dogs. The other night, my CGM awoke me after I had plummeted to 29. Some type 1s suffer regular seizures, too. I am glad I have never. I admit that I can’t imagine how awful that must be to seize from a low.

  5. I was diagnosed in a coma, DKA, with a blood sugar of over 1000 and almost died. I take DKA very seriously and hope never to do that again.

  6. I joined here because my T2 friends, colleagues, and acquaintances did not know how to relate to my struggle to have a healthy pregnancy. For T1 women, this is perhaps the greatest struggle we face if we decide we would like to start a family. For this, we not only struggle with our self-management before, during, and after pregnancy, but we also face some of the nastiest comments and prejudices from those who feel we are irresponsible for trying or endangering our children.

  7. For me, basically, I think that I share T2’s desire for control, desire for respect, struggle for self-discipline, fear of complications, fear of the unknown, need for supportive family and doctors, need for better insurance coverage for my supplies and medicines (in the U.S.), and hard work toward healthy diet and exercise regimens.

Where I feel we differ is in:

—isolation (T1 is less common and we often grow up not knowing any other T1s, although this could apply to anyone living in an isolated environment)
—immediate survival needs (I am so worried about these throughout the day that the concerns I list above become decidedly secondary)
—stolen childhood/teenagehoods (where applicable, obviously doesn’t apply to my LADA friends)
—generally wider swings in blood sugar, affecting our long-term and short-term safety on a more frequent basis (although this is not altogether exclusive to T1)

So, can you relate? Do you agree? What’s your take on your own struggle? What do you wish I knew?

2

Melissa, You have expressed so many of my feelings as a T1. Thank you! I have such problems with the fear of night-time problems. Last night I tossed and turned but did not wake up enough to test. This morning I was 226. So I wonder, did I go too low, and my adrenalin caused my liver to release glucagon (or whatever happens that keeps me from passing out), and that’s why I’m so tired this morning that I can barely put one foot in front of the other? I can’t know unless I set my alarm for 2 am. But when I set my alarm for 2 am, I’m really tired and cranky the next day. (It seems on top of the blood sugar roller coaster, that losing sleep just makes me even more fatigued.) I have allergies, too, which make my blood sugars spike unexpectedly. My monthly cycles play havoc with my blood sugars. Some days it is such a battle just to be NICE when I am so tired. And it is such a battle to be self-disciplined in my eating and testing and exercising when I’m so tired. (just figuring out the @#$! insulin dose before each meals after counting out the carbs I’m going to eat, weighing or measuring or counting the food, writing down the correctional dose based on my blood sugar, adding in the dose based on my insulin to carb ratio, remembering to take that shot before I eat during the pre-meal rush at my house… it’s a lot to have on your mind ALL the time. I am constantly aware of my body–do I feel slightly nauseous because my blood sugar could be dropping? Do I have a headache because I’m starting to go low? Do I feel like crying because I’m starting to get low? Do I feel tired because I’m going too high, or are my allergies starting up? or maybe both?

I feel that as a diabetic, this awareness of what is going on with my body and the need to constantly be “in control” of it, is a very constant stress in my life. So, when other stressful things happen, such as teenage stuff, or elder care stuff, I may not deal with it as well as someone who doesn’t already have this minute-to-minute stress about blood sugars and insulin. I’ve not ever passed out, but that is because I place enough stress on myself to be aware and cope and respect that insulin is a very dangerous drug with potentially lethal side effects when not closely monitored. (and, I must say, I’ve probably deserved to pass out a couple of times, especially when I was young and in denial and on one shot a day, before blood sugar meters came along). I don’t mean to be a grinch, but I love sweet foods, and Christmas can be pretty miserable for me, with the additional stress and busy-ness, as well as all the social occasions with food that I should not be eating. I really HATE it when a kind and gracious hostess waves a sugary dessert under my nose and asks me not once but twice if I want some!!!

3

i have had T1 for 19 years since i was 4. i was never really treated differently, but early on in my life i had to educate non diabetics what my disease was about.

yeah i am one of those T1’s who have pretty much spent my whole life not really thinking about what was bad food and what was good food and yet i haven’t had too many problems which i owe to whoever is watching over me because i don’t think i’d be alive if i didn’t have them. i was never affraid of dying in my sleep to be honest i’d prefer to die that way, but of old age, not T1 preferably.

I was a bad T1 when i was in elementary school, i’d test but not as often as i should have. my A1c’s were always in the 9’s at that time in my life. then in middle school i got sick and couldn’t figure out what was wrong because i didn’t have the flue and i just didn’t feel good, so i started to take care of myself i ate better than i used to, i tested more often i changed my dosage according to what i was having and what BG’s i had. that was the main problem when i was in elementary school, i just took a fixed amount of insulin i didn’t test and took a shot. anyway after i switched endo’s during my second year of middle school, i got a really good doctor who is the sweetest doctor i have ever met he also was a T1 and said, what works for you do it, don’t beat yourself up if you have a few highs or a few lows. i enjoyed my doctors visits i felt more like i was going to see an old friend rather than a man in a white coat yelling at me for bad numbers. as the years went on with him as my endo i began to lose weight and he asked me how i did it and i told him my routine and he said that i was like 1 in i guess 40,000 people in general who could control my weight and get my A1c’s lower than 8 as well as i was with the way i was doing it. that was my junior year of high school. i was so happy to see those numbers. then over the years i went on insurance then no insurance then back on and finally last year i was back on and decided im gonna get a pump and finally got one after 5 years of trying to get on insurance to get me a pump.

i still struggle sometimes to have good numbers and sometimes i want to throw something, scream and say i give up, but then i remember a couple of friends of mine both who had died, but of different reason and i think. i can’t die because i don’t want people to hurt the way i did when they died. so i keep going i keep living and keep a smile on my face because i am still around to see some pretty amazing things like a few years ago when the olympics were here in utah, or to see New York City striving after 9/11. there is so much more to life than test strips, shots, and pills. it’s experiencing all that life has to offer, the sunsets off in the west, or the first snowfall of the year. yeah i know im starting to sound like a romance novelist here but its true. don’t feel to bad if you have a bad day yeah get it out cry, scream, play a sport to get the aggression out, but remember you are here because people love you and need you.

4

I know what u mean in number 2 and 6.
Also its even a struggle for me to lose weight even though i eat right and drink lots of water. I also have hypothyroidism so it makes it hard for me. I am depress and have a very low self esteem. Even though im engaged to the one i actually love. I feel like sometimes his there because he feels bad about me. I was diagnose when i was a baby and like you said i almost died too. My mom used to pray every day and now she is not the same. She has gain too much weight because of me. I sometimes wish I wasn’t the one with this illness but then again im great full cause i learn so many things i learn to appreciate life. I cannot say i am the one struggling only because also my family suffers from it. Too many times in the hospital because of negligence in school. No one believed me i had diabetes, one teacher even said i was provoking it just to attract attention. And i agree T1 are very isolated i didn’t know no one with this same illness as me until i went to college and open up more to the world. Also i don’t know if i got it right but if your meaning that us as T1 kids and teenagers didn’t do many of the stuffs normal kids would do, i also agree. I couldnt go have fun with friends cause my mom was always protecting me from everything. To be honest, im 20 years old and i’ve never been out of town or camping without my family. She would kill me if i ever go without her permission she said that i would have to move out the house in order for me to go out of town. Im the only girl i know in this town who is 20 and still has curfew. so yeah idk if i got your topic right but yeah this are my struggles =(.

5

You made me cry! Beautifully written! (and yes, I have written a romance novel, although it did not get published!)

6

Most of the things you listed don’t really apply to me, because I’ve only been a T1 for a little over a year, but I can really relate to number one. No, I really can’t eat what I want or at least I shouldn’t. I eat relatively low carb, because for me that is the only way to maintain good control. If I eat something with a lot of carbs or a lot of protein at once my blood sugar always suffers for it later, even if I have insulin to correct. That doesn’t mean I deny myself the occasional piece of cake, but it’s a treat and in my mind there is always a price tag attached. Some days I gladly pay the price, some days it’s just not worth it.

Another thing for me is cooking together with friends or eating at my parents. Sometimes I get incredibly annoyed, when they suggest we cook something that is tasty but ridiculously high carb, because it seems inconsiderate that they forgot about my D. On the other hand, it shows me, that they still see me as the same person I was before diagnosis and not someone who has Diabetes, OMG! And that’s a good thing. So talk about being conflicted.

Sometimes I also resent the need to always plan ahead. Do I have glucose tabs on me? How many test strips are left? Will I need my insulin and meter when I go out? Do I have to stock up on something…?

But in the end there are a lot more good than bad days and that’s all that counts.

7

Thank you for sharing your insights. I really appreciate your intention to stay focussed on the positives and your own personal concerns. Perhaps later I might fill you in on some of my own struggles if I can organize them in some coherant manner. It is indeed a struggle that I do have to keep in the back of my mind (T2)

8

I hope you do. :slight_smile:

9

I can relate to you there, Adriana, to a good extent. My mom didn’t shield me from doing things, per se, but she went everywhere with me. Instead of letting me go out dating or alone with my friends, she’d take me out with my friends and boyfriend. She’d chaperone my school trips or I didn’t get to go. When I wanted to go out of state to college, I found out that wasn’t an option. I adore my mom, but I think my diabetes and her constant concern contributed to her co-dependency. I think she ran herself ragged being my primary caretaker and it leaves me feeling guilty and even at times resentful. To this day, I feel guilty if my husband and I catch a movie by ourselves. How messed up is that?

10

I really like this topic Melissa, thank you for posting it!

  • I have had type one since I was twelve years old. I was told at diagnosis that if I didn’t take my insulin and test my blood sugar every day that I would die. I was told that I had to watch what kinds of foods I ate. I was told that I had to be careful when it came to my favorite “active” activities like dance and soccer. Taking trips family vacations involved a lot of planning due to all of my new accessories. I remember going to teachers and shyly handing over the letter my mom had written up to let them know that …well…that I was different from the other students. Being the ‘perfect’ diabetic was always in the back of my mind then - stressing to watch what I ate, how I ate, my insulin, the testing. I suppose that really hasn’t changed. I’m hard on my self in all facets of my life, possibly too hard, as a result of growing up with diabetes.

  • When I was diagnosed I was in DKA. I was told by the ER doctor that if my mother had waited just one more day to bring me in that I would have been in a coma. I remember what DKA felt like distinctly - I would drink water and never be able to quench the thirst. I remember sneaking into the bathroom several times in the middle of the night so that I could drink straight from the faucet. Nothing, absolutely nothing, could quench that thirst. Imagine what it would feel like to be thirsty for three months straight! I remember falling asleep during dinner, eating and eating and eating yet becoming skeletal, I remember blacking out during recess.

  • Like Melissa I can’t just eat whatever I want. For example, yesterday I indulged in some baked cheetos. Since I had purchased the big bag I had to count out how many cheetos I wanted to eat and dose based on that amount. I guess I had eaten more then I had dosed for because I spent all of yesterday above 250. Today I have yet to get below 180. And then some foods take my high and leave me there regardless of if I follow the nutritional information. So far it’s just macaroni and cheese (any variety) and rice-a-roni (though regular rice is fine?).

  • At my last count I averaged 12 blood sugar tests a day. At this point - with fifteen years under my belt - I have caluses on the tips of all of my fingers. I also have little redish brown pin pricked sized scabs.

  • I am on the pump and am absolutely terrified of changing out the canula. I’ve always shied away from injecting in my stomach, but since I got the pump a couple of months ago that is really the best place to put it. My husband still sits with me while I do it just to calm me down. The infections hurt. If you nick a vein while inserting the new canula it hurts. It…yeah. It may seem like it is way easier then the other diabetes management methods but it has it’s own set of difficulties.

11

Thanks so much for telling us this, MelissaBL. I really want to be an encouragement to my T1 friends…

I’ll keep this relatively short because I don’t have much time, but for now let me say that this PWT2D would like respect and encouragement. My friends tell me that I’m a strong woman. I agree with that assessment and if I had to define myself with one word, I’d say I was a survivor. I’m used to fighting for the good things in my life, like my dreams and for justice and even for freedom from a terrible husband. But this disease is overwhelming. Am I fighting for my health or is this actually a fight to the death against the diabetes and the related autoimmune diseases I have?

Don’t label me lazy because I’m not. Don’t check out my extra weight and call me unattractive because I’m actually very pretty. Don’t tell me to get up off my butt and exercise because I bet my workouts this weekend will be as much as you do and maybe even more. (Except for Di and she knows who I mean) I test when I wake up, at the postprandial 1 hour and 2 hour marks. I test before I go to bed. I’m not on insulin and the only reason I’m not on insulin is that I severely restrict carbohydrates. I know that this will probably not work much longer.

I’m crying now. I just want to be accepted here for who I am and I guess I just realized how much tudiabetes means to me.

12

This adult-onset Type 1’s perspective:

Hi Melissa: Thanks for starting this discussion. I have adult-onset Type 1 diabetes, diagnosed at the age of 35. In 1995, I was hospitalized in DKA, put on IV insulin, but less than 24 hours later I was taken off of exogenous insulin, put on glyburide, and sent home. My hospital release papers said I had NIDDM (non insulin dependent diabetes mellitus, the term for Type 2 diabetes in 1995). Within one week, after much research on my part (and considerable suffering because the glyburide simply didn’t work and I continued to have severe hyperglycemia), I confronted the diagnosing endocrinologist about my misdiagnosis as having Type 2, he apologized, put me on endogenous insulin, and put in my chart the correct diagnosis of IDDM (insulin dependent diabetes mellitus, now Type 1 autoimmune diabetes). Shortly thereafter, that endocrinologist diagnosed me as having autoimmune hypothyroidism (Hashimoto’s Disease).

So what would I like people to know about Type 1 diabetes and specifically adult-onset Type 1 diabetes? First, adult-onset Type 1 is incredibly common, representing more than half of new-onset Type 1 (in a new book, “Type 1 Diabetes in Adults” (Informa Healthcare, 2008) the authors state that adult-onset Type 1 is two to three times more common than childhood onset Type 1). Latent autoimmune diabetes in adults (LADA), which is adult-onset Type 1 autoimmune diabetes, represents 10-20% of ALL cases of diabetes. But LADAs are misdiagnosed and included in statistics for Type 2. If all adult-onset Type 1 diabetics (including both rapid onset Type 1 like me or slow onset Type 1 aka LADA) are appropriately included in the statistics and figures for Type 1 diabetes, then Type 1 represents about 20-25% of the total diabetic population, not the oft-quoted 5-10%. And if LADAs are taken out of Type 2 statistics, then about 20% of Type 2s are on insulin (not the oft-quoted 40%) and less than 10% of Type 2s are not overweight or obese (not the oft-quoted 20%). No judgments, just stating scientific and medical fact (I am a scientist, after all).

On Tudiabetes, some people have gotten upset with me for saying that Type 1 and Type 2 are completely different diseases with different genetics, causes, treatments, and cures. Which in fact is true. But WHY I say that is because if you have Type 1 diabetes, it is essential to get the only appropriate treatment for Type 1, which is exogenous insulin. It is a matter of life and death, and yes, some of us with adult-onset Type 1 who were misdiagnosed as having Type 2 and given the wrong treatment (glyburide is not an appropriate treatment for someone with Type 1) have either died of DKA or had severe complications. Which would have been prevented if appropriate care had been received.

Others say that getting a correct diagnosis is not important, only getting the correct treatment is important. Hopefully people can see from my example above that getting a correct diagnosis is essential—again, it is a matter of life and death. With Type 1 diabetes there should not be any messing around—beginning on intensive treatment with exogenous insulin as soon as possible slows the autoimmune attack on the beta cells and lessens the risk of diabetic complications.

Famous adult-onset Type 1 diabetics include Mary Tyler Moore (age 33) and Olympic swimmer Gary Hall, Jr., (age 24).

Finally, I want to emphasize that I don’t think that one disease (Type 1 versus Type 2) is any worse than the other. I have a dear friend who was diagnosed with Type 2 diabetes less than five years ago, and I have learned so much by being part of his support team. We are inspiration for each other. From my perspective, he has it rougher than me because he is not on insulin. I can bolus for carbs—he just doesn’t eat them. And I cannot imagine having been diagnosed with Type 1 as a kid as Melissa and many of you were—being a kid is tough enough.

We can all learn from each other and grow as a result.

Melitta

13

I was also diagnosed as a child - I am going to address this as per my personal experiences.

  1. I am one of the few type 1 diabetics that can eat what I want. It is rare that I will shoot sky high after eating a “bad” food. Although this is true, I do still decline some foods, as I know it isn’t the best thing for my well-being.

  2. I do sometimes want sympathy but I am not going to ask for it. Like you, I am here for support. Although, yes, I’m here for support, I do respect they feelings of the Type 2 diabetics. I’m sure for everyone it is really a shock when they are presented huge expectation for a lifestyle change.

  3. I too, test 10-16 times a day. There are days I test more when I do not want to wear my CGMS. I also had to fight for my CGMS. Insurance did not feel 10 trips to the ER for hypoglycemia unawareness was enough to warrant one. The more I test, the more I can keep my A1C in my personal target range.

  4. I have not known anyone who has passed away due to nocturnal hypoglycemia. Although this is true, I fear it every night. If I am going to be alone for the night, be it my husband being out of town for business or the like, I will wear my CGMS to quench my fear of possibly not waking up due to nocturnal hypoglycemia.

  5. I too was also diagnosed in DKA. I have also experienced DKA 1 other time when my pump malfunctioned. I also take DKA very seriously. I do not wish to experience it again, nor do I want any others to experience it.

  6. I joined TuDiabetes for the support of others living with this wretched disease. To me, it doesn’t matter if you are Type 1, Type 1.5, Type 2, MODY, or any other type of diabetic. You are part of this “family” of people diagnosed with diabetes, you and I can learn from each other to make living with this disease a bit easier. Support in numbers, it is key for survival.

  7. I believe diabetics, regardless of type are questing for control, self-disciple, respect, fear of complications and the unknown. Every day is a new day, and a day we can have a better understanding of this disease.

I was never isolated as a child with diabetes. As a child of a type 1, I had the support and understanding from one of the greatest mother’s in the world. I remember being so scared to do my own injections, and my mother would time our meals so we tested, and injected together until I was able to wear a pump. I graduated early, and was able to go off to college. My parents did not hold me back one bit. During pregnancy I did have wide swings of blood sugars in which I felt purely scared and as if I failed. I do not feel I had a real stolen childhood diabetes-wise, mine was more related to the advanced education I received therefore forcing me to become an adult probably sooner than I should have been.

Right now, as a type 1 diabetic, a new mother to twins, and a wife I do struggle with my every day care of my diabetes. There are days I want to say to HE** with it and I want to be “normal” just so I can have a bit of rest every day. I wish I didn’t have to look down at my pump and try to remember when my last site change was, or if I calculated those carbohydrates correctly. Everyday I hope and pray neither twin will be diagnosed with diabetes. I am very prepared though, as throughout my life I have overcome this obstacle of being a diabetic and I will persevere and be able to support them if they are diagnosed. I know I can do this, as I may be a diabetic, but I can accomplish anything I put my mind to.

14

Great thread Melissa!

I was diagnosed T1 at age 7 in 1970. At that time, the “sugar diabetes” was all bad news. My only real memory of that time is learning that I have a disease, I will have it for the rest of my life and it will kill me. I overheard a conversation once, kids tend to be invisible, saying that my life expectancy was less than 20 years. I know there is a link between depression and D, but I wonder if this type of thing has a bigger role in my depression than the D itself.

There is a family history of T1, my maternal grandmother. Family history mentions twins that died in their childhood of “a wasting disease” in the late 1800’s. My mom actually diagnosed me because my breath had a “rotten fruit” smell, the same her mom would get when they had to take her to the hospital. None of my immediate family has T2, but I know that some cousins do.

I had my rebellious years also, got married, divorced, have two great kids (which explains why my hair is only mostly brown these days), all those things people do when they live.

I never really had any contact with any other diabetics at all, let alone another T1. I came here originally looking for pumping information not support. I found lots of great info, but also found something I didn’t even realize I needed. Support. I never really had a “support network” growing up, so it is difficult for me to accept the support at times, I simply never learned how. I can’t even read any of those self help books, they just end up ■■■■■■■ me off. LOL, wonder if there is a Dummies Guide to Accepting Support, Even From Books on Amazon

All in all, I try to take care of my condition today. If I do that, then I put off those complications that were supposed to kill me 20 years ago for another 20 years.

I think it is hard at times to even understand where other T1s are coming from, let alone a T2. There is an old Taoist saying He who tells you cannot know, and he who knows cannot tell you. I know what my path has been, but it is personal, made of my choices in life. Your path has to be different, made of your own choices,

15

Dear readers.

I am on a very high dosage of insulin per day and have a low carb to insulin ratio. Not sure what type I am as proper diagnosis was never done. It was just assumed that if you were over the age of 20 you were type 2.

  1. Insulin resitance is the main problem here and using insulin to combat it is necessary to preserve life and health but conterproductive from the point of view of weight gain. If you use and ever increasing amount of insulin to keep the BG in the normal range you will gain weight and this will cause more insulin use and more weight gain. You will be caught in a vicious circle and end up dead from overweight.

  2. The solutions are not obvious. A massive amount of exercise is definitely good. This becomes more and more difficult as you age and/or gain more weight. Metformin or avandia are supposed to help but in my case make me really sick. Symlin is not available in canada. Presently trying to minimize the daily insulin dose by using mainly only basal dose of lantus twice in 24 hours. And a very strict low carb diet and exercise to limit the postprandial highs. Eating a slight hypocaloric diet also helps the resistance.

  3. In my case serious lows are not an issue as I am very aware of lows and will wake up for sure (touch wood) if it goes below 70. The psychological situation is not so clear as fear of lows may cause me to overeat. I am trying to convince my brain that lows are a negligeable problem, I am not sure that it agrees.

  4. a good night sleep is next to impossible and does not occur except on rare occaisions. To fall asleep my BG must be in the lower range of normal and to stay alseep it must not fall further. This is very hard to achieve.

  5. Not matter what I do I constantly feel exhausted. this I find the most difficult thing about diabetes. A multitude of finger pricks and injections per day are a negligeable problem in comparaison.

  6. Have a great sympathy for diabetics that have severe lows must be terribly scarry.

  7. Not looking forward to a future life in bad health and poverty but at least I had a reasonably healthy childhood, still remember the eisenhower years when america seemed to be at its happiest, and can clearly see the injustice of being deprived of a care free childhood.

  8. my wish is that all diabetics have enough strenght to carry this heavy cross. it is important to keep a sense of humor. I was really amused by the trillions that the cold war cost to obtain victory and now the nationalisation of banking and big auto. It is a divine comedy.

16

You know, I think stupid/insensitive things said to us are probably a leading cause of depression. I know for me, when I get depressed, it’s not even so much from the D, but from dealing with people thinking they know better than I do… it gets old and I just can’t handle it well AT ALL.

I do feel extremely lucky however that the only other T1 I know IRL and see often is my neighbor, who is in her mid-late 70’s. She had polio as a child too, and apart from the lingering effects of that, she’s really in exceptional health - she even had had 3 babies in the 50’s (that boggles my mind, really) back when diabetics were advised not to have ANY. She’s a really neat person, and would be without being T1 - I can only hope that in 50 years I’ll be as happy and healthy as she is :slight_smile:

I personally feel like I am going to die from cancer LONG before any D complications impact my life - there’s such a strong family history (every single family member that has died in my lifetime, died of cancer), THAT is really what I fear, not D. If I take care of my D there’s no reason to think I won’t live however long I was meant to (without D complications) before something else gets me.

17

Eloquently put. As a caretaker of a Type 1 child, I agree on all points. Main frustration, from the care-taking perspective, is thrice weekly (at least, sometimes daily) basal changes, due to puberty, growth hormones in the evening and overnight hours, necessitating round the clock blood sugar checks (very little sleep). Also the point about the generally wider swings (which you absolutely have little control over). Goals for healthy blood sugar ranges are the same for Type 2s as Type 1s, but goals given to Type 2s are much lower than those given for the Type 1 child. However, our endos don’t even educate us properly about the proper ranges because they know it is not achieveable. So even her target goals leave her at some risk. Goals are to keep in range 50 to 75 percent of the day. Will that ensure later health? They don’t know. She cannot eat what other children eat (as I remember them assuring us at diagnosis). She can eat many foods and can eat “unhealthy” foods. Some unhealthy foods (potato chips and ice cream) do not effect her blood sugar, whereas fruit does. She still eats plenty of fruit regardless and we try to give her the meals we know won’t spike blood sugars as much as possible. She cannot restrict carbs as the adults do, or she will not grow properly. She loves carbs and I don’t think she will restrict them too much as an adult, so we have to learn how to handle them and cover them with insulin. Damned if you do, damned if you don’t. I fear this disease is bound to impact her on psychological level.

18

I was terrified of inserting infusion sets too. I would start shaking before inserting every set for my minimed pump. I had an insertion device but it was loud and you have to press it in two spots to insert. I dono it just really freaked me out. I use the omnipod pump now and since you just press a button and it clicks and then inserts randomly it had been a lot easier! I’m glad I’m not the only one that gets scared!

19

Wow, whenever I read something like that, I think how lucky I am. When I was in high school, I did a foreign exchange trip to France; I insisted on going to college out of state. When I talked to my parents about it later, they talk about how completely worried and nervous they were, but they didn’t show it. That’s something I always try to get across to parents of diabetics – that I think it’s healthiest for kids to be taught to deal with the diabetes on their own, since they are going to grow up and be their own people.

Then again, though, I’m a horrible, horrible diabetic, so maybe that method didn’t work…

20

awe i didn’t mean to make you cry. hug now go have fun eating that sugar free wafer. eww, im sorry i can’t stand sugar free snackage except those frosted wafer things. YUMMM.