I have a question for those of you who are longtime diabetics. First, I was diagnosed back on May 9. 2009. I am still kind of coming to grips with my life with Diabetes. Don’t get me wrong, I am ecstatic with the progress I have made in bringing my Blood Sugar down and my A1C to a normal level. I am just wondering what this will all mean to me 10, 15, 20 years down the road assuming I can keep my Blood Sugar under control. In effect, what has it meant to you, your life, your way of interacting with the world? How has it affected your life beyond what everyone sees? Do you fear for the future, do you try to just block it out and go day to day? Do you feel you are much different as a person now that you were before diabetes? Sorry to ask so many questions…just curious.
Diagnosed as a very young T2 I have had it for about 19 years but officially 10 because of insurance. I can tell you I go on day to day just like everybody else. I am on a pump and there is no damage to my organs so far thank goodness, and that is why I am on a pump to make sure that I don’t get any. I feel unique sometimes from others, yes but that is ok. I don’t see being unique as a bad thing. No one treats me like I have a disease they treat me like oh you must take good care of yourself to look the way you do. They have encountered ones that have looked really bad. As far as the future, I am optimistic, I have a friend that just got a kidney and pancreas and no longer is a diabetic and is doing great. I am on a pump and starting to do better. The future looks better everyday for us all. Keep your chin up!!
“…officially 10 because of insurance.” - I’m interested in knowing more about this. I’ll soon cross 10 years as a diabetic. How does it affect insurance?
Well I had it as a teen because of gestational and then it turned permanent and had all the symptoms of blurry vision and peeing all the time. And tired all the time. But had no insurance. So when I finally got insurance I was told I had it then but got my official diagnosis then.
Those are good questions to ask Steve and I think most people have those cross their minds from time to time, esp when newly diagnosed.
I’m like Rainbowgoddess, a 40-yr T1. To me anymore it is kinda like having blue eyes and brown hair (well, still mostly brown, I blame my children!). Think about it like this: If you have a dog, you need to take care of it properly, i.e. take it out to poop. If you don’t care for your D, your D will poop all over you.
It will eventually become an integral part of your day-to-day. However, I find that I can’t just “block it out”. Going on auto-pilot gets me into trouble. I don’t really worry too much about the future, I try and do the best I can today. Hopefully that will be good enough to let the future take care of itself.
Keep up the good work!
Steve,
Bill here with 20 years of Type 1 royalty… lol And Yes I did actually laugh just writing that 
How has it affected my life beyond what everyone sees? That is probably the best question I have heard in awhile about diabetes. Hard to answer. Diabetes has grounded me in a good way. It has given me a different outlook on life, that others who don’t have diabetes or don’t have an illiness will never get. I feel IT HAS NOT LIMITED me in anyway.
Scott makes a good point “going on auto-pilot” will only get you into trouble. What that means is that you can’t leave your house without putting on your shoes, testing your BG, and being diabetic prepared for the day. That is your day. It’s just something you have to add in.
I found that “waiting” for a cure has never helped me either. Sure I hope for a cure but it is not something I take to the bank anymore. I am the only person that controls my Diabetes. The more I know about how to control it, the better.
Accepting my Diabetes is a constant struggle, and true mental/life challenge. I have faced my diabetes inward towards me, and what I can do now to help my situation.
Good Luck my Friend
Hi Steve:) I am also a longstanding T1…30 years and have been fortunate to have no complications. I have had ups and downs but, by and large…have been very blessed. I had a GREAT doctor at dx who started me on multiple injections (UL basal and Regular for meals…even added a small does of NPH at bedtime for dawn phenomenon)…the pump of the 70’s! I did live w/ fear of complications…so, when they never materialized…I had a party! I did not realize how much fear I carried around w/ me! Fear of disability and illness…but, all that innovative treatment early on probably helped me out:) That and I probably do not carry all the genes for complications (node to the fates). With all the new options for insulin delivery and research an arms length away from a cure…I feel very optimistic I will live to a ripe old age:) and more importantly (and maybe this is the gift of dealing w/ illness) I will live every day fully…or at least gratefully. I am so glad my family supported me in doing anything I wanted w/ my life and I did and still do. I think all the gloom and doom early on gave way to freedom to choose a different path…less traditional and more filled w/ adventure. Embrace your diagnosis as much as able…and use it as a tool to live more fully…and let’s all party the day they cure the first of us:)
Congrats on your success so far. The earlier in diagnosis you can achieve–and maintain–on-target A1Cs, the better for avoiding complications!
Like several members who’ve posted here, I’ve lived with diabetes for over 3 decades and it’s pretty much all I’ve known. So I expect my views are very much different from someone who comes to the diabetes community later in life.
For much of my life, there was no such thing as the diabetes community (exceptions: JDRF and ADA fundraisers and diabetes camp–hooray), so it often was an isolating condition. Not so much, now that there are online friends who understand the ups and downs 24/7!
I tend to go day to day rather than fear the future. I’ve benefited from huge advances in self-care technology and know more are coming. Which is what I focus on much more than a cure.
I’ve seen that even years of so-so blood glucose control (some call that “college”) can be improved on and that many early complications can be halted or reversed.
I’m more detailed oriented (at least on some things), but I still find myself running out of test strips or forgetting to pick up a prescription. I firmly believe in the power of being an informed purchaser of health care goods and services, as difficult as that can be. I would never, ever park in a handicap parking spot unless I really needed it. I hate math, so I think it an ironic challenge to deal with a disease that requires nearly hourly calculations to keep everything in balance–but I do a lot of it on autopilot now. I’m well-informed on nutrition and probably drive my family crazy encouraging them to eat more non-starchy veggies and cut the sodium and saturated fats, but I still make and serve birthday cakes. I hate to exercise even though I know how good it is for my blood sugars and blood pressure. Some days I walk around with my head about to explode because I can’t figure out the reason for a high or a low. And other days I think, “I rock at taking care of myself.” I get furious when I read that the skyrocketing health care costs in the US are caused by people with chronic illnesses (and diabetes is often first in the list) who aren’t compliant. I’m compliant, dammit, and I miss fewer days of work because of sick days than MANY of my coworkers who don’t have diabetes. Plus, don’t the complainers know it’s difficult to be compliant when diabetes education is rare and expensive and supplies and medications are expensive.
I know it’s gonna be a good day when I do a perfect insulin pump infusion set with no wrinkles in the adhesive bandage (it’s the small things in life). And I’m forever amazed and awed by the way I see other people with diabetes forge their own paths, take care of themselves, and, most of all, truly graciously thoughtfully offer encouragement and advice to others living with diabetes. Seriously, this disease knows no age, gender, intelligence, ethnic, or cultural boundaries and our community is a rich and diverse universe unto itself. Which brings me much comfort and joy. Thanks for the chance to rant for a bit!
Scott, as usual, your analogies are brilliant. And you got to use the word “poop.”
Steve, I’m 19 years in (Type 1) and pushing 30 (oooh, I’m so old), but I will give you the advice not to make any predictions about your future life that you weren’t making beforehand. You will still know and relate to the people you care about, retire, live well if you want to, etc. There will just also be diabetes and its extra baggage.
Like others diagnosed in childhood, I don’t really know a me without diabetes, so I can’t help you there, but I will say that I have always believed that there’s not an alternate universe. There’s not a grown-up me out there who didn’t get it who lives a peachy life of ease and doesn’t have to check her blood sugar. There’s just me today, living my life. There’s not an older you floating out there that doesn’t have it and you ended up on the crap path instead. So acceptance is the key, and like Bill said, the constant struggle. This is your path, so make it worthwhile. In the meantime, ask questions of our community and yell when you need to.
Thank you everyone for your responses. I really appreciate it. To me, diabetes is just one of many adventures to add to many that has been in my almost 44 years of life. As far as feeling different, at this time I don’t feel different. I have been scared by other things. I have operated in the political world for 10 years. I have managed to anger a former state senator to the point he fired shots at me and ran me off the road. I have wreaked havock to several corrupt politicians in a state I used to live. I have had many people tell me that I should write a book all the adveventures that I have been through. LOL…Most would not believe half of them. I have carried a very stubborn demeanor about myself and when I get angry and focused I make things happen. I wonder if you do go through stages in this fight? As far as the new battle of Diabetes, I figure it is just like another chapter in the sagas of my life. I have attacked it with the same ferocity of some of the corrupt creeps I have gone after and just as relentlessly. I guess that is why my blood sugar and A1C are showing so well. The long term is the battle yet to be determined. Anyway, I am still interested in what anyone has to say further. Again, thank you all.
Hi Steve the bottom line is diabetes is attacking every major organ system in your body, every second of every day. I have been a type 1 for thirty five years now, and am doing very well. People need to understand that it is the cumulative effects of all that we do in our lives, that contribute to our overall mental and physical health and blood sugar control for anyone is certainly manageable, and important.
What this means to you down the road is that the better your health, the less maintainenece you will do as a diabetic who is blind or suffering from any of the other complications, while STILL maintaining your blood sugars. Once you accept a SAFE level of maintainence that you are comfortable with, keep the focus there and you will automatically forget about blindness and DKA and all the other “stuff” because you are not in that zone.
If you are curious about my thoughts on all of the above you may want to see some things I have written on Oprah’s Diabetes Support Board. You can find it at www.oprah.com/community/community/health/diabetes and you may find the “chapter” on glucometers interesting because they record, and tell us more than we know.
Take it a day at a time and congratulations and continued success.
Love Always
The Anonymous Diabetic.
You asked these questions:
- “In effect, what has it meant to you, your life, your way of interacting with the world?”
- " How has it affected your life beyond what everyone sees?"
- “Do you fear for the future, do you try to just block it out and go day to day?”
- “Do you feel you are much different as a person now that you were before diabetes?”
I am a Type 2 for the past 26 yrs., according to my diagnosis date in 1995. For me it started me on a new path of discovery. I started http://diabeticcookbookblog.com/ and have continued with it for the past year, but it took me twenty years to figure out what and how I wanted to face diabetes and another five years on how to tell my story, handle the changes, and help others who are going through the same thing. This is how it has affected my life and how I have chosen to interact with the world.
When it comes to your third question, let me put it this way, watch this video here. It will explain how you should answer this question.
Your final question, I am not that much different, however my attitude is. When I was first hit with the diagnosis, my first thought was “OMG, it has finally happened, I have faced my past family generations fears.” And then I thought, “How am I going to handle the cost?”
But all of that is in the past, you face what the higher power puts before you and he/she will not place anything before you if he/she decides that you can not handle it.
I hope this helps you and if you have more questions, need a person to talk to, or just need to have a sounding board to yell at I am here for you. Send me a message and I will help out any way that I can.
Diabetically Yours,
Adam
Steve:
Long term type 1 here, so my perspective is one of a long term diabetic but not a type 2. first congrats on getting the BS under control, that is a big deal and I think you are doing well.
So lets see, Blood sugar under control - if you can keep it under control you have a better chance of living better longer. Which is not to say diabetics who have complications are ‘bad’ diabetics. Poeple cna be the best and still have complications
Meant to me? hmm well it has altered my life in significant ways. I was 17 when I got sick and because of family experiences, I started to live life rapidly. At 52, these days i wish I had slowed down and enjoyed more.
Beyond what everyone sees? Well i suppose the speed up is a good example. I figured i had a bunch of living to do in a short period of time. I was married at 19, children at 21 and busted my hump through school. Look at this way, I was running from what I could nto run from.
Fear the future? yes. I have for 35 years and I doubt I will ever get over it. Htese days i fear more for my granddaughter, but I spent my life worrying about my sons. Do I worry? Yes, you bet.
Do I try to block it out? nope, it is front and center in my life, all of the time. I wish I could block it out.
Different? yes. I am very different. In some ways better and in some worse.
questions? questions are important ask away it is what we do.
rick phillips
I have been a type 1 diabetic since I was five years so I never really knew life without it. I would say, if anything, diabetes has made me a very strong person. You learn to cope with problems you never had to face, which only leads to strength. Keeping your A1C at a normal rate will just become a routine. So when you say what will it be like 10, 15, 20 years down the road, I would say it will be no different. You become proud of being diabetic and proud that you are able to control it. It’s not an easy thing to control and once you have mastered it, it is rather simple to live with.
I sometimes fear the future, but the truth is I cannot change what will happen in the future, but I can change the present. If I keep my diabetes at a good level and stay healthy, there should be no reason to fear the future.
some awesome replies here…
One other thing I would mention is that it not only affects you, it affects everyone in your life. Your friends and family all care about you, so D has an effect on them as well. They want to help you, but may not be sure how. They will worry about insulting you, making you upset. That is what loved ones do. Let them help, they want to and you’ll find support, you’ll all learn more about each other. There are some aspects of all of this that are really pretty personal, but talk to these folks, teach them about you, about what D is and it is affecting you.
We all go thru the 5-stages when confronted with something like D, our loved ones go thru it as well and we need to be there for them as much as we need them to be there for us
did I mention recently how much D sucks? If I didn’t, well, it still does… if I did, well it still does…
/winl
Take care Steve and glad you are here:) and thanks for taking on all those politicos that stand in the way of making real progress on the issues that matter.
Hi Steve,
I have been type 1 D since 1972 and I can certainly tell you what you have to look forwards to if you don’t do your best to keep your levels close to normal.
As a juvinile D I had no problems at all for the first 8 or 9 yrs and so I started taking things for granted that nothing was going to happen. Since that time I spent 15 yrs on dissability due to frequent diabetic siezures. Sometimes 2 or 3 in a months time. I can’t tell you how many times I have woken up in the back of an ambulance saying "Not again!"
I started taking better care to get things in order with my D and it took several years of trial and error working with an Endo to get things better. Keep in mind, when I started in 1985 going to an Endo, my HBA1c levels were close to 13.
Then in '94 I moved from the Detroit area to a small town in Tennessee and at that time was approved for disability.
Over the next few years things did improve and I managed to get to a point that I was rarely having siezures but was still not in anything close to what I would call control. My A1c levels were still running about 10. At that time there were no Endos in my area so I traveled 75 miles to see one and I had a very good one and we had A1c levels of 8.7 to 9.5 generaly which isn’t good by a long shot, but was a great improvement from what I had been getting. Upto that time the only side effects I had was Retinopathy which required many lazer surgeries to treat and I was ok with that because I knew that D was the leading cause of blindness and I was just happy after 25 yrs of uncontrolable D to still have sight.
Then I started seeing a new Endo that just opened in my area and was introduced to the pump. Now my A1c levels are close to 7.9 which is better than they had ever been and better than I ever thought they would be. But because of the many years of not being in control, after that I started having more negative side effects with Neuropathy (nerve damage) and my feet felt like they were walking on razor blades and burning like I had acid in my veins.
Needless to say, I have had many problems with my D and mainly due to the fact that I allowed it to happen by my actions many years before.
To make a long story short (if it’s not too late…LOL) the better you do now the better you’ll have it later!
I was diagnosed 1/1/97… I’m now 26 years old and I have no complications due to my diabetes. I have a great A1C. As I was a child when I was diagnosed, I don’t believe it affected my life in any way. I don’t think others view me differently due to my diabetes.
I’m type 2, diagnosed 10 years ago at age 46. I’ve been on a bit of a roller coaster over the 10 years. First, angry because I was diagnosed at a point when I was the leanest & most physically fit ever; confused because no one else in my immediate family is diabetic. Then, ecstatic because I felt like I could manage my BG & retain some kind of control over the disease. Later, frustrated with less successful outcomes while using the same management techniques & equally frustrated with healthcare providers, who don’t seem to know as much as I do about some aspects of diabetes.
It has fundamentally changed the way I think of myself as a vital, healthy person. It has made things like air travel, etc. more cumbersome (now on insulin.)
I do not fear for the future - what good would that do? But, I recognize that strict BG control is basic to my continued good health & sometimes, I just get tired of it. Sometimes, I just don’t want to think about it. Hope this response isn’t too discouraging. I am actually a very optimistic person & I frequently remind myself that I am fortunate to have a chronic medical condition for which there are so many treatment options … versus one that could be neither treated nor cured.
Steve-
I don’t let diabetes effect me. For me, checking my blood is like brushing my teeth. It’s just something I have to do! It’s always there. It won’t ever go away, but I live life to the fullest. Check out the blog I posted today about my mom. I’ve lived a nice life and today my doctor told me I currently have a life expectancy of 90! Kinda cool if you ask me.
I don’t fear the future. I don’t block it out. I can’t answer your question about feeling any different from before I was diabetic. I don’t remember. I am diabetic. I’ve always been diabetic (since age 2 1/2) I am a person with diabetes, but I’m also a mom, a wife, an artist and sometimes I remember my name : )