T1 input

By Anngelia Latest Reply 2013-04-29 09:03:27 -0500
Started 2009-03-10 10:58:04 -0500

To all you T1s out there let us know what you think. Tell us what you biggest challenge is or what is working the best for you. Or whatever you think will benefit you or the group the most.

49 replies

aq 2009-04-21 12:54:56 -0500 Report

Wow! I've been a diabetic for 32yrs. and my biggest challenge has always been food and doing the right thing. As a teenager I never checked my sugars but I would go by the low blood sugar feeling I would get(not the way to do things). I managed this 'til about the age of 28 when I put myself on a 2nd shot of insulin at dinner (the right thing to do for my management). I continued this until I had gotten older and 2 shots of insulin went to 4 so this is where I am now. I have my eyesight, all my toes, a little neuropathy and small damage to my kidneys. I always paid attention to my symptoms and my body. The slightest cold I ran to the doctors (he knew me very well). The doctors have told me over the years "whatever you're doing keep doing, we can learn from you". It's definately hard some days I LOVE devils food cake, pies and ice cream please do not think it has been easy these 32yrs. it hasn't. always been. If I can be an inspiration to anyone to keep doing THE CORRECT THINGS by all means KEEP UP THE GOOD WORK!

Brenda Kruse
Brenda Kruse 2009-04-05 17:16:03 -0500 Report

Anngelia, I feel that my greatest challenge as a T1 is depression. I think it's just the same old, same old routine day in and day out. It's also the inability to have much control over our condition. Sometimes I feel that the harder I try, the worse my numbers get. I attribute that to the stress of trying to be "perfect". What works best for me is humor. My hubby is hilarious and he is gifted in making me laugh. But, when he's not around, I try to read Chrisitan novels based on Pioneer days. I'll pick an author and read through each series he/she has written, in order. I also enjoy funny movies, and DVD series that my granddaughter enjoys, such as "Christy", "Anne of Gren Gables", etc. Thank you for bringing up this topic. I believe God brings people into our lives to help us at the right times. I'm so thankful for all of my friends in this community! Blessings! Brenda

alwaystryin 2009-04-02 12:20:32 -0500 Report

Our biggest challenge is the Cost of being healthy. After that, probably diet. And of course for all T1's, keeping the testing levels as low as we can, especially fasting numbers.

What is working the best for us is for my Wife is good right now with her insulin control, watching the carb's (sleeper carbs), and some type of exercise during the day.

Frustrated mom
Frustrated mom 2009-03-17 15:03:12 -0500 Report

My biggest challenge is for my son to control his…We have all tried to get him to go on the pump, but so far he refuses. He is 16 1/2 and just wants to be normal..It is just frustrating…

2009-03-17 22:46:24 -0500 Report

I know how he feels, I didn't want to get on the pump for a long time, til I got sick of having to take needles with me everywhere I went.

Tell him I ride a motorcycle, and the pump is alot better than needles cause if I feel high, all I have to do is bolus, and when I go places for a few days, I don't have to pack a fistful of needles, a bottle of insulin etc. You only have to change your set every three days, so it's TONS better than shots.

Oh, and tell him I have 42 tattoos!

Anngelia 2009-03-29 22:33:19 -0500 Report

I remember being 16 and just wanting to fit in. I would skip my shots until I couldnt stand up and walk. Now what made me think that made me fit in I will never understand! Thank God I got past the teenage years.

You probably dont want to mother him too much and I understand that but you also want him to make it past his teenage years. I really feel for my parents and what I put them through.

Richard157 2009-03-30 10:20:53 -0500 Report

This makes me feel grateful that I was diagnosed when I was 6. I followed my Mother's and my doctor's instructions to the letter. A child that age is not as likely to rebel. Then when I was a teen I was so accustomed to my routine that I did no feel like cheating and I stuck with my routine and now, 63 years later, I am so thankful for my good health.

Anngelia 2009-03-30 14:32:32 -0500 Report

Richard I was only a couple of years older than you at dx but when I hit my teenage years I just did everything I could to be "normal". I dont think anyone knew what to do with me. I really put them through the ringer.

Richard157 2009-03-30 14:54:19 -0500 Report

Angelina, I have read about other diabetics diagnosed when very young rebelling when they became teens. I think thr reason I did not do that is that I was very shy until I was in college. I did not party and pal around with other teens. I stayed close to home except when I was in school. I studied my nooks in school and did not make friends. There was no influence that resulted in my being tempted to rebel. I think I would have been better off if I had not been shy even if I did party and run a lot of higher blood sugar. I'm not sure, what do you think? Lol!

Surf Worsh
Surf Worsh 2009-03-31 22:12:14 -0500 Report

i just turned 21 and ive been t1 for 17 years. Im just afraid im getting too lax and relying on feeling too much rather than checking…

Richard157 2009-03-12 21:13:17 -0500 Report

I had Type1 for 40 years before I learned I should follow a low carb diet. My biggest challange was getting some control and stopping all the terrible highs and the hypos too. I learned all about carb counting and I determined my meal and snack insulin dosages by knowing jow many carbs ai was going to eat. Then I learned to apply insulin/carb ratios and my control improved very much. Starting in June, 2007 I learned about insulin sensitivity factors and used that to determine how much insulin to take to correct a high blood sugar level. Basal/bolus control with those other factors has turned my life around. I finally have great control. I have met my challenge!

Anngelia 2009-03-12 22:24:16 -0500 Report

Richard I have a least one low every day. Sometimes I have a high too but lows seem to occur much more often for me. I count my carbs and try to be as accurate as possible but I'm not always as close to perfect as I would like to be. Sometimes its just frustrating.

Richard157 2009-03-13 10:18:04 -0500 Report

Angelia, I also pump and have 1 or 2 lows, usually in the 60's, each day and not necessarily at the same time of day. My problem is usually my changing routine from day to day. I have a hard to compensate for activities that are not always the same every day. I tend to overcompensate and produce tests outside of my comfort range (70-130).

vgarrison 2009-03-14 00:20:34 -0500 Report


I too have issues with a different daily routine everyday. I never have a set work schedule for I am a home health aid as well as a hospice aid. I eat on the same schedule as my clients and of course they all have different eating schedules, so I never know for sure from day to day when I will eat my meals.

I am not on a pump, but I do take a sliding scale for my insulin. I don't know either from day to day what my activities will be. How much excercise I get varies from day to day as well. It can get quite frustrated, but I have to work to keep my insurance to get my supplies and insulin so that I can work and have a reason to complain about my varying schedule. Ahh the never ending cycle of being diabetic.

Blessed Be

2009-03-11 19:57:45 -0500 Report

My biggest challenge is the 'normal' people! Especially the family 'normal' ones. They honestly flat out piss me off when they tell me I'm 'normal'. I come back with, 'YOU tell ME what NORMAL person sticks their fingers 4 or more times a day, AND gives themselves shots 4 times a day, or has a machine strapped to them to ACT like a pancreas!

I guess my challenge is to NOT get pissed, eh? lol

vgarrison 2009-03-14 00:15:26 -0500 Report


I guess I'm the opposite…I hate it when people don't look at me as normal. I have actually had a waiter ask me if I was sure about an order I had made. I do have a tattoo on my arm that says medical alert diabetic, but I can still eat "normal" food, I just have to factor it into my day.

Blessed Be

Saphire 2009-03-11 15:05:04 -0500 Report

I was diagnosed when I was 11 years old and I have now had it for 18 years. I have been wanting to go on the pump but with no insurance I can't afford the supplies for it. I am lucky that there are programs out there that will help me get insulin, syringes, and strips when I need them. When I was growing up and I did my blood sugars in the restroom I would have my fellow students ask me if I was diabetic I would say yes and they would tell me about a grandparent, aunt, or uncle that aldo had diabetes. I find it frustrating that as an adult that people automatically assume that I am a drug addict instead of a diabetic.

Anngelia 2009-03-11 18:44:31 -0500 Report

So many people just dont get it. But even if they do, they often think you are a T2 and just need to watch what you eat. I know we all need to watch what we eat but as a T1 it goes so far beyond that.

2009-03-13 20:43:56 -0500 Report

Saphire, when my daughter was in grade school at a DARE meeting, she announced to a State Police Trooper that, 'my mama uses needles'! A few hours later, there came a knock on my door, and there stood that very same State Trooper! Asking rather uncomfortably about my needles! I produced a red metal toolbox that I kept locked with a padlock, due to my daughters young age, and showed her what she was dieing to see! A test meter, lancets, test strips, and a bag of syringes! I pulled the bottle of insulin outta the fridge, and asked the nice Trooper if they were embarassed yet!

vgarrison 2009-03-14 00:13:02 -0500 Report

Oh the people that think we are drug addicts are my favorite NOT!!! I have actually had someone call the police and tell them that a druggie was in the bathroom shooting up…yep I'm an addict…addicticted to insulin and my life that is!!!

I wear my diagnosis on my arm and will tell everyone who asks that I'm a diabetic yes…hopefully some day with more people aware..there will be a cure!!

zobel 2009-03-25 23:10:25 -0500 Report

frustration || i have re-written this reply a couple of times so here goes again. condensed bellow

not every one accepts our testing and injections
not every one accepts our mood shifts, our low sugar reactions, our need to stop and correct the current situation.

but social progress is being made

life is good most days carl

Brenda Kruse
Brenda Kruse 2009-04-05 17:06:36 -0500 Report

Saphire, I was diagnosed at age 11 also. Unfortunately, I'm nearly 59 now, so I really don't remember a time without it. I've gotten to be quite open about my diabetes. I test in public, bolus (I'm on a pump) in public, and talk about it in public. I'm very open about it becaus I feel the general public is very poorly educated about diabetes in general and t1 in particular. Everyone assumes they're the same and they are basically different conditions. I will pray that at some point you can go on the pump. It has been a gift from God for me. Blessings to you! Brenda

Saphire 2009-04-16 12:52:30 -0500 Report

I found out about a research study that they are waiting for government approval on but it is done with stem cells and they have had some good results so far. The person you want to talk to is Dr. Francesca Milanetti and her email is f-milanetti@northwestern.edu small

right now they aren't taking patients but when they do they want people that have been dianosed for three months or less. I figure that those of us that have had it for a long time should also get in touch so that they can think about doing the procedure on long term t1's and see how that works. So if everyone can contact them that would be great that way they know that most of the t1 comunity wants to be a part of this study and also have the same chance of having it reversed or at least just have it so that we can take less insulin than we already do.

oetiki 2009-03-10 23:32:17 -0500 Report

Being a type 1 diabetic has made me the person who I am today. I was diagnozed when I was 13 so now I have been a diabetic more years then a non-diabetic. I have learned to be organized and to plan accordingly. One of a greatest challenges was admitting to others that I am a diabetic, my mom always told me not to say anything to anyone because people were going to threat me different. That made it hard growing up but now I am glad when people ask me questions.

Melissa Dawn
Melissa Dawn 2009-03-10 21:35:20 -0500 Report

Diabetes is a part of my life — I've known life as a diabetic more than I've known life without it. It requires daily, hourly, minute maintenance. I have to pay attention to what my body is saying to me at every moment. If I don't, I know what the effects can be. For all my care, I still have bad days (like today) for control. If I get a cold, the flu, any sort of infection I can be out of knocked way off course — and that happens often enough to be frustrating.

That said? I am SO extremely blessed. I can do so many things that, had I been born 30 years earlier, would never have been possible. I can check my blood sugar 8 times a day or more if I want. I have an insulin pump that makes it so I can do just about anything and eat the way I want to. I can skip meals if I have no appetite and follow my bodies lead on what I will and won't eat. I can kick it with the best of them.

I was fortunate that when I was diagnosed the only diabetic I knew was well controlled, on a pump, and led a very normal and happy life. I now meet other diabetics who talk about the trials and hardships — I've seen the results of uncontrolled diabetes enough to be frightened by it. Still, I was not led to believe that my diabetes would own my life. I can do anything I want if I plan accordingly.

Anngelia 2009-03-10 23:42:36 -0500 Report

My grandfather and my uncle were both diabetics (T1s) even before I was born. My grandfather was dx'd just right after they discovered insulin. So I grew up with it. Then at age 8 I got the lovely news. So diabetes is all I have ever known. My uncle is such a diabetic genius. He is very knowledgeable about the subject and he is the one who got me interested in being on a pump. If I ever have questions I go to him first. He has been a BIG help to me. I am so happy that he told me I should think about going on a pump.

momwith juvie
momwith juvie 2009-03-10 17:02:43 -0500 Report

well i have to say i think my sons biggest chalenge is becoming 1 with his diabetes.he does what he has to but he never talks about it and will not.i think it just has tramatized his brain.he will tell pll heis t1 but he wont talk one on one with me or anyone else.he tells the doc just let me know what i have to do and im ok.i hate it.but it must be very hard for him

roshy 2009-03-10 17:16:54 -0500 Report

how old is your son , is he a teen??

Anngelia 2009-03-10 23:34:27 -0500 Report

Some kids will talk about it and some wont. When I was growing up there was another girl in my school who had it. She wouldnt talk about it and then there was me…I didnt mind talking about it at all. I figured I didnt ask for it so why should I have to hide it. I didnt brag about it but if it came up or someone asked I just said "yes I am a diabetic". I aslo told people because I wanted them to know if I started acting funny I wanted them to know to get me some sugar. I was in the 1st grade when I was dx'd so I dont even remember life before D.

2009-03-10 15:26:03 -0500 Report

Anngelia, I can't relate to you pumpers but the thought of it still scares me, but I'm a chicken. Being newly diagnosed, I can't imagine years of these daily shots. I wake up and dread the first one, the next., it's a never ending fear. I have to admit, the shots are not normally bad, it's just the fact that I know this is a daily thing for life. I can't imagine the cost of supplies for the pump. It feels like all I do is buy syringes and insulin which is by no means inexpensive. I thought after 3 months I would quit watching the clock in fear of missing the shot at it's given time. I'm tired of watching the clock. I haven't gone back to work yet and I don't know how I'll handle it when I have to hit the floor running. I react to insulin different each day, some days I go hypo within a few minutes and am sick the rest of the day. Other days are what I guess you could call normal. I know Type 1 is tough and I hope and pray for more options! Take care! Angie

Anngelia 2009-03-10 23:26:01 -0500 Report

I know the pump scares a lot of people but I liked the thought of knowing that instead of multiple sticks per day I could go with one stick that would last me 3 to 5 days. For me it was what worked. But I know for others MDI is what works. We all have to decide for ourselves what works best. Oh! if only we could all just take a pill.

roshy 2009-03-10 15:21:52 -0500 Report

greatest challenges, well where do i start!!

only been type one for five years now but the list of challenges go on and on and on . . .

i ll start with the issue of accepting that i need to take injections to eat to stay healthy and live a healthy life

The issue of being faced with my mortality at the age of 21

the fact my sugars are so out of conttrol i cant function through out the day, im constantly tired and and cant concentrate keep up with my friends or college work

i cant beat those petty cravings

i feel like im just waiting for something drastic to happen so ill change my distructive lifestyle

i dont know what works or what doesnt work cos at this stage i just want to workand im sick of trying!! if you know what i mean!

JoyceAnn - 33595
JoyceAnn - 33595 2009-04-02 15:10:51 -0500 Report

I feel the same as you do on this one, roshy! I have only been a type one for a year and a half and my blood sugars are completely out of control. I also have a very low immune system thanks to the chemo for cancer. So that defineately does not help when I seem to be sick all of the time. I did have to go on heprin theorpy and then for a time of three months I had low to normal blood sugars. Go figure, right?

roshy 2009-04-02 15:19:42 -0500 Report

Joyce we're all in this together right!! Everyday can be a struggle to concentrate , to even care whats going on around us. Lately ive been thinking i just want to start all over again.
I went to my first thearapist session today and he assesed me. he said i have ajustment issues which need to be addressed and with time i will accept my diabetes and take care of it better. But how much time!! and what kind of damage will i do to myself before i will finialy will accept my condition!!

Im just scared and find it hard to deal with most of the time. I wish i could find the strength to change now rather then later! x

Anngelia 2009-04-04 08:52:14 -0500 Report

I've had diabetes for almost 40 years. To this day I still have trouble getting control at times. I do my best to count carbs but there are still times that I do a lousy job and my BS goes skyhigh. But you just have to keep trying and do your best.

MeiMei 2009-04-16 13:21:52 -0500 Report

Roshy, I don't think anyone ever "accepts" their disease no matter what it is. We learn to deal with it. So there is where I think your therapist is wrong. Who needs therapists anyway, they're expensive and they are usually wrong and don't do anything to help right the situation. Fire him and stick with us instead. We'll take care of you.

CALpumper 2009-03-10 14:20:14 -0500 Report

Hi Anngelia.

Hard to pick just one as far as my biggest challenge.
After 24 years, like shanie1 wrote, loss of hypo (or changing of) warnings is very frustrating and scary.

And plainly put, depression is an issue. Most days I am ok. Other days I desperately search for a "vacation" from it all to no avail.

Right now my biggest challenge is purchasing insulin (I use Humalog), test strips and infusions sets for my pump. The expense of the insulin kills me and makes my management less than. It is very frustrating and stirs some serious anger in me.

Wish I had something positive to write but today, I just don't. I feel "tapped out". I am tired of it all but continue to do blood tests and take insulin when I eat.

So wishing a pill and exercise would ease my anger but I don't have that option…

Anngelia 2009-03-10 14:49:36 -0500 Report

Cal I totally understand your feelings, I share a lot of them. I have been fighting hypo unawareness for years. I can easily go low with no warning. I've had too many lows in the middle of the night which is really tough on my husband. I know he gets frustrated but he is a good guy and he works me through it. I dont know what I would do without him.

Anngelia 2009-03-10 11:01:03 -0500 Report

Ok, I'll start this off. The best thing I have done as far as diabetes is I started on an insulin pump 10 years ago. I have said many times that a pump is God's greatest gift to a diabetic and I truely believe that. It is the closest thing to a pancreas and soooooooo much better than daily injections.

shanie1 2009-03-10 11:50:07 -0500 Report

Hi Anngelia my biggest challenge is my loss of hypo warnings and having to check my blood during the night. But i have a great blood meter Accu-chek aviva,and its so much better having the lancets preloaded. Take care

Brenda Kruse
Brenda Kruse 2009-04-05 17:10:06 -0500 Report

Amen and Amen! I feel the pump is God's greatest gift to a diabetic, as well. I had a pancreas transplant for 9 yrs.and 9 mos. (which was awesome in many ways—I believe it rested my heart and kidneys), but the anti-rejection drugs were pure "poison" as the transplant surgeon put it. They were extremely hard on my body. I'm thankful to be back on the pump. Hope your day is full of all you hold dear! Blessings! Brenda