Me, i am kind of a drama queen, so I do not see anything bad in exaggerating to make a point, especially if it move the AP closer, or a cure. of course, if (i believe you all) those numbers are inaccurate, they could have inserted a tiny disclaimer, such as maybe "we wanted to grab your attention).
Re the 2-4% death rate, is it more common on MDI vs pump? Just wondering.
I completely agree with you Lara.
I am a type 1, my mother was an extremely brittle and insulin sensitive diabetic, she died following a severe hypo at the age of 42. Unfortunately, she was not discovered in time and was left with severe brain damage and was left unable to breathe etc by herself. She died slowly over the course of a week after life support was switched off, it devastated both myself and my sister, we were still in our teens at the time.
An important point though, what constitutes normal? The majority of my peers don't have diabetes but I wouldn't consider their lives any more or less normal than mine ha ;)
Diabetes is an horrendous disease, yes a positive approach and sunny disposition help, as does taking responsibility, educating yourself and managing it the best you can. The deeper your understanding of the illness is and the more experience you have of it the easier it gets, but it still a tiring, difficult disease, that offers no respite.
Looking at today for example, I have been out with friends most of the day, off road biking, catching a music gig and going for out for a classic English breakfast. A pretty "normal"day to an outsider, but as part of that "normal" day. I have had to do two infusion site changes (blocked cannula), I have pricked my bruised finger tips eleven times, I have had to carb carb count, make sensible choices with food, ignoring the urge to go for 110g carb of burger and chips etc etc, declined alcohol and so on..
I started a fast at 1pm as I am assessing my basal profiles at the moment and then had a hypo whilst trying to get jiggy with my girlfriend, so no in a very real sense I don't think my life will ever be normal ha. I believe diabetes will shorten my life expetency and that I will eventually die of its complications, it's a long term degenerative, chronic illness that negatively impacts upon every organ in the body. I accepted that a long time ago and I endeavour to minimise the risks through tight control and taking a positive attitude. I am a realist and I think denial and over optimism can be a dangerous thing.
Focusing on the positives, I live a healthier lifestyle with diabetes than I would without it. I don't smoke (probably would have if I wasn't diabetic), I don't do recreational drugs (probably would do socially if I wasn't diabetic) I eat a healthy, balanced diet (definitely wouldn't have such a focus on it if I wasn't diabetic) I exercise regularly (again I wouldn't do this so much if I wasn't diabetic)
It's like anything in life, you make the best of the hand you have been doubt. Diabetes is no fun, but it could be a hell of alot worse. When I was diagnosed at the age of 12, my endo took me round the children's cancer ward and let me talk to the children there who were dying...
I have a friend with Crones disease with half a stomach who has had a colostomy bag for most of his life, I have another friend in a wheelchair who had his spinal cord severed in an accident. Life be a *itch, but we adapt, grow and on we go..
Riva Greenberg wrote an excellent article about this ad for Huffington Post. Catch it at http://www.huffingtonpost.com/riva-greenberg/jdrf-diabetes-ad_b_1083606.html .
I have a T1 daughter, age 5, diagnosed at age 3 and she is completely normal. She plays, laughs, dances, learns - everything a "normal" child does. Does she have to check her BG 10+ times a day and wear an insulin pump and monitor her health more closely - of course she does, and always will! But she certainly is normal! Is a person in a wheelchair not "normal"? What about a person with a prosthetic limb? What about a person with a severe peanut or other food allergy? What about someone with severe asthma? Who here is so perfect that we can determine what is normal? T1 is a serious condition that requires lifelong monitoring and control. But it is offensive to me to hear someone state my child is not normal because the beta cells in her pancreas stopped working through no fault of her own. From my perspective, it's not "normal" to have a pity party for yourself and focus on all the negative, awful things that MIGHT happen someday. I think it's normal to focus on the positive and all the things you can do and can achieve.
I don't have T1 and don't know what it feels like to have it. But my child does. And not a second of any day goes by that I wouldn't take that extra burden away from her and put it on me. But please, if you don't feel "normal", don't lump all T1s together by saying that no T1s can be normal. Attitude is everything.
I find this line of talk upsetting. What is normal and not normal and what is the point of defining this anyway. We all have bagage in life be it mental or physical. I do not see the value in defining our diabetic children as not normal, we all know it is a serious condition and pray for a cure. I have encouraged my son to join tudiabetes for support, he has declined he is too busy being a kid, managing his diabetes and carrying on, dreaming of his future. He feels different from other children and has sadness and bad diabetes days, but to be honest if he read any of this he would feel very "unnormal" and not supported. Am I trying to shelter him, maybe, but I am educating him about his diabetes and nurturing his nondiabetes wonderful qualities. I will not let diabetes hamper his spirit or limit his potential.
I belive that no body is normal. Every one is unique. I belive that if as long as a diabetic takes care of their diabetes by checking them self and giving themselves insulin they can live as normal as a life as everyone else. Diabetes shouldnt stop people from doing the things they love. If they set their mind to something then they can do whatever they want in life ( just watch out for those annoying lows and highs )
I have no problem with JDRF's ad. I think we need to squarely address problems such as death due to hypo, diabulimia, death by insulin OD, etc. These are real problems, and denial does not serve us well. I was diagnosed with Type 1 diabetes at the age of 35, so I know what it is like to live a "normal" life and then radically have to change (and throw the word "spontaneous" out the window). That said, I believe we can lead really excellent lives with Type 1 diabetes. Lara, thank you for posting, and I am truly sorry about your friend.
I also suspect that I might be dead already if I didn't have diabetes as I was rather uh, wild when I was younger (with diabetes...) and may have been quite a bit wilder if I didn't have diabetes "brakes" on some of the more debauched things that we were involved in...
T1 for 38 years . it was annoying to constantly take urine samples (no bs testing in 1973). I was hospitalized at 18 w/bs @ 1100…had an unknown urinary tract infection. Spent 12 days in the hospital. Came out and said I am NEVER going back! Exercise craze began w/Jane Fonda at the time w/gyms opening up everywhere. I became pragmatic with my care and adjusted w/the times. Education and being aware of how your own body and how it works AND reacts is incredibly difficult but the most important thing you can do for yourself. Not sure “what normal is”. After 38 yrs I would say it is easier today than ever before to be a diabetic. Nutrition is in the forefront of minds. Every food item in your aisles lists carb count. Its learning how much insulin to take at that time of day for that amount of food/drink. I went to an Exercise w/diabetes conference 6 yrs ago. I had just become a cozmo pump user and it was suggestion made to me Integrated Diabetes ran seminars throughout weekend. Gary Scheiner refers to himself as “Diabetic Coach”. I have gained more knowledge about “my diabetes” in 6yrs than in all the 32 yrs previous! He is in PA and can work with you on line. Education + knowledge are the keys to your diabetic success .it is not said often as to how individual being diabetic is. Our ups + and downs come with our own activity There is no doubt we have to be at a higher level of consciousness each and every time we do and eat something. Understanding the consequences we may face later is up to you.we are constantly being told how perfect we must be and it is difficult to hear when we are not if all your friends and family had to face the reality of their own health every 3 hrs or so they wouldn’t consider them selves “normal” either. I sincerly wish All the best in seeking the information you need for your diabetic success. -Maureen email@example.com
Buckley, jeez, so sorry about your mom. I can't imagine what your family went through.
And just for the record, I'm not a pessimist by any means, just a realist. I'm not depressed and I don't have a bad attitude about D in general. I believe diabetes has affected my life in terms of some major decisions I've made and things like athletic performance. That's nothing I'm lamenting, just a fact. To tell a child that D does not have to affect their lives and they are completely normal is a disservice to them. Just my opinion after almost 40 years of having D. No need to take offense at the use of the word "normal". I'd like to see that energy focused on somrthing important--like finding a cure for all of us.
Hi, Maureen! I read Gary Scheiner's book last year and I'm glad he was able to help you. It helps to get a fresh perspective sometimes. I've found that as I've aged my BSL is increasingly difficult to predict. I suspect it has a lot to do with hormones... things really went wacky after pregnancy.
That is a really excellent post Lara! I totally agree that despite what the exact statistics are, there is no denying that people are in big risk of various diabetes complications, low blood sugar included. We can not sweep that under the rug and pretend that it isn't there. As much as diabetes treatments help, they can not prevent all problems.
It can indeed be scary to face up to, especially for parents of diabetes children who have trouble sleeping at night worrying about their kids. The only way to really erase this fear is if, or when, we finally develop a cure. Whatever form that cure will take, it should offer people an acceptable cure-like lifestyle - meaning people with type 1 should not have to live in fear of such complications.
We have made progress in recent years, but need to keep on pushing for a cure. Otherwise, I don't think we will ever be free from such fears.
I agree with you Lara. We cant say that diabetics parents or diabetic children are any more emotional than the parents and children involved with cancer. Its about time we face the truth without objectivity.
Awesome post. Being told I can live a normal life since diagnosis has always really bothered me. Like you I am a realist. I do not get depressed our upset about my situation. I deal with it and do what I need to do to make the best of it. A little thing we call.....life. When I was first diagnosed I followed my endo's and dietitians suggestions. For years, I attempted to live a "normal" life. As the years went by I noticed it was getting harder and harder to control my blood sugars. I felt like most of the time. I was very lucky to never end up in the hospital, though I came close a couple times. A couple years ago I decided I was going to stop acting normal and really take control. I stopped drinking alcohol and coffee. I stopped consuming large amounts of carbs. Cut out all sugars. Got back into exercising on a schedule. Now, I feel excellent and have leaned up. I think it really helps accepting your situation and doing your best to make the most of it.
I couldn't agree with you more. Parents want so badly to reassure their children that they're "normal" and can do anything, when the message should be "You can do anything provided you're diligent and careful about managing your diabetes." I don't see anything wrong with communicating that to a child. Because they AREN'T the same as everyone else, just like children with cancer, or children in wheelchairs or visually-impaired children aren't like everyone else. The list could go on. We finally got to the point where we include children with disabilities in public school, and part of the reason is that we HAVE diversity, and we need to acknowledge it exists. So let T1 (and, increasingly, T2) be part of the natural diversity of human beings, but don't deny that it is difficult to live with and can have dire consequences if not cared for. I really don't like all the emphasis on T1 overachievers who are young, strong and athletic, when the majority of us are just ordinary people, and no, we CAN'T do everything. I, personally, am not going to climb Mt. Everest, and I'm NOT a 20 or 30-something, slim, attractive and athletic. I actually think JDRF and ADA do as much harm by stereotyping as the media does, and that's not helping anyone.
I agree with you Lara.
I’m pretty sure that not ALL parents of T1 children have deluded themselves into thinking that their child is “normal”… I think that what’s really happening is that they’re WISHING their child was “normal”. Certainly, my folks didn’t sugar-coat (pun intended) my condition. BUT… they did address what the changes in my life would mean - and encouraged me to live my life as normally as possible - with the clear understanding that it would involve a lot of hard work.
I was dx’d (diagnosed) at 11 yrs old in 1966. Our family doc dx’d me, and treated me for it for the first year or so. Then, my parents took me to an endo to get an “expert” opinion. In short - that SOB, after a short exam, sat us down, and 'splained to my parents - in a manner that showed he thought of me as an utter child, and at 12, wouldn’t understand - that I must quit scouts and baseball, and should never marry or have kids, as I would be dead by age 28, with the last few years of that time suffering from blindness, kidney failure, and possibly loss of limbs. This was a rather disconcerting discovery for me.
My parents took me back to our family doc; his approach was much different - he encouraged me to stay active and do everything I wanted to - while maintaining good control of my T1. My dad’s take on this was - “you can do anything your friends can do - but, like a manual transmission car, in the world of automatics, you’ll have to work a little harder to do it.” Personally, I still like that comparison - essentially, “different” doesn’t mean “inferior” in any way that matters. And dad was always quick to point out some things that I wouldn’t be able to do… like become an air force pilot.
BUT… I did accomplish a lot. In defiance of the endo that told me my life was already half over, and I must quit all the things I loved… by the age of 17 I became an Eagle Scout, a lifeguard and swim/dive instructor, a SCUBA diver, a pilot, and I was competing in swim / dive competitions. I was also an avid hiker/camper and whitewater canoeist. SO… it’s not so much that parents are “in denial”… it’s just that they want their kids to be able to do everything they want to - aka, live a “normal” life.
On the JDRF ad… it is a scare tactic - but it was directed at the government’s funding process; here’s a good article on it, and it addresses the 1 in 20 stat: https://www.healthcentral.com/article/hypoglycemia-and-mortality-do-120-people-die-from-severe-hypoglycemia
I myself have already died once of hypoglycemia - within a year of starting insulin - during the night. I survived because at hospital they managed to resuscitate me; I got to the hospital because my parents were checking on me often during the night. Since then I’ve had one other nighttime severe-low - my BG was zero on the paramedic’s meter (which meant something below 20), and I crushed two vertebrae in my back during the seizure that ensued; fortunately, my GF woke up, and called 911. That was long time ago; I’m now married, and still am subject to lows at nite but my wife is very aware of my lows - and we have an “alert beagle”… he smells when I’m low, and wakes my wife who wakes me. Without them, I’d probably have been dead permanently by now.
So… while my life is by no means “normal”… I DO live a “normal” life in terms of what I do and how I engage in activities and deal with friends.
BUT… the rest of the world (the non-D’s) need to be made aware that D is NOT cured, and IS significantly life-threatening. JDRF’s scare-tactics may be a tad overboard - but so are all the efforts to make us seem “normal”.
Sorry to go on so long…
This is a really interesting thread. I referenced it in my blog because it got me thinking about the topic. I hope that is OK!
Where is your blog? I’d be interested in reading.