What did you wish you did within your first year of diagnosis?

I am still within my first year of diagnosis. I was diagnosed with T1 in Aug of 2009 at age 27.

This may be a weird question but I thought i would ask: Does anyone wish that there was something they had done in their first year of diagnosis?

Does anyone have any regrets from the first year?

Do you wish you had done anything medically? Keeping track of firsts?

Is anyone grateful for something that they did do during their first year?

I was grateful to keep a relatively normal a1c my first year, and grateful for the medical team I had to support me and guide me in the right direction to keep my blood sugars under control... that's a start

My answer to this question extends beyond just my first year of diagnosis.  I was dx'd in 1973, so I have seen a lot of changes in T1D management over the years.  I wish I had recorded the dates for when I switched from one, to two, to four injections per day, the date when I switched from the beef/pork insulin of the era to synthetic, the date when I was able to give up testing my urine for "blood sugar" and got my first Glucometer...  Probably a lot of others that I would have liked to have a record of, but don't...  Oh well!

All I wish is that I had fully accepted my diagnosis.  My denial carried on far past the first year.  Acceptance leads to much better management.

i am approaching me one year diaversary in exactly two weeks.

i wish that i had been a little bit more daring this year. i guess i mean not let diabetes be so much of a part of me, to have taken more chances when i could have because i'll never be able to do those things again.

i am grateful that i get a pump in my first year of diagnosis and that i realized now that diabetes is not who i am.

I wish I cared more. I was only 12 when I was diagnosed. The way I saw it, I was sick (pre-diagnosis), went to the hospital, and was fixed. Not one medical professional even bothered to explain to a 12 year old that this would be a life long struggle. Sounds silly, but it's true!

I really like your signature(:

As a Parent ,I wish I had reached out more and not tried to handle things alone.I think I would have saved myself and those around me alot of heartache. Standing alone when there is no reason to...one of the most foolish things I ever did. I found out if you reach out and find others that have type1,you feel a little stronger-your not alone anymore.You even feel a little safer.Then you find laughter returning more often.You find your life returning to a normal..That's why I Love Juvenation :)

I truly advocate getting into a routine and stick to it. Testing only takes 5 seconds. Make sure you test. That is one thing I wish I did more of my first year. Being diagnosed younger I would assert my independence and "took control" of being a type one diabetic. It was great, but I would inject and eat, never test. I didn't care. It was to much of a hassle. Even though I dragged my kit (tester, insulin, syringes, etc.) with me where ever I went. Research stuff and know what is going on in the world. Get involved if you can. it will be better in the long run. Also always try to maintain and keep a positive attitude now. That is what I would suggest. Life is better this way.

Also don't let being a diabetic hold you back. There were times when I was in college, when I was younger, that I looked at being a person with type diabetes as a restraint. I never traveled abroad. I hated to travel, 'cause I had to pack everything with me. Now I more or less do everything, the things I hold back on are due to other fears. Never because I am afraid of passing out, or losing something. Keep moving forward and never hold back.

Wow. Thank you everyone for this great feedback!

Looking back I can't believe how nonchalant I was with diabetes my first year. I didn't test very often and was never too concerned about lows or highs. Somehow it worked out though. My A1Cs were under 6 and haven't been that low since. Maybe it was the "honeymoon" stage helping me out?

Anyway I would make a point to check your sugars, write them down and notice patterns to tighten control where possible. Things change over time so having a good understanding of why things happen and how your body reacts to certain things is good.

It is not so much of what I could have done but what my endo could have/should have done with me being dx as type 1/1.5 so late in life.  He was the non-chalant one.  What I read much later, and too late for me, was ther e  were things tat could have and should have been done, in my opinion, to mitigate the didasrous consequences i'm now living with.

[quote user="Nads"]

My answer to this question extends beyond just my first year of diagnosis.  I was dx'd in 1973, so I have seen a lot of changes in T1D management over the years.  I wish I had recorded the dates for when I switched from one, to two, to four injections per day, the date when I switched from the beef/pork insulin of the era to synthetic, the date when I was able to give up testing my urine for "blood sugar" and got my first Glucometer...  Probably a lot of others that I would have liked to have a record of, but don't...  Oh well!

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I agree with Nads. I have gone through lots of changes since 1942, and I can remember most of them, but not the dates, or how long. But I'm less sure about whether it will be useful for those who are just starting, because isn't the cure supposed to be right around the corner? You can probably guess how long I've been hearing that!

Tom

If I could go back, I would not have done to diabetes camp!!  That was a really traumatic experience for me.  They forced me to eat food when my blood sugar was high and I had to hide food to avoid eating it.  Also, the girls in my bunk were racist and mean to the the only black camper, and it made me so mad that I was all rebellious and angry and I told her that when the girls were being mean, she should just yell at them, "Get off my suitcase!"  Haha, I was soooooo funny (just kidding).

I was only five so there wasn't too much I could do. I am very glad my parents and doctors helped me keep it under decent control. I guess the one thing I wish I had the chance to do was to meet other type 1 diabetics. I spent years feeling I was the only one and that was hard. It made me pretty shy.

I whole-heartedly agree with what Brian Q. said, "Don't let being a diabetic hold you back."  I was 26 when I was dx'd, but I grew up with my younger brother having d, and he gave me the same advice. 

My first year:  I was diagnosed in February 2007, on an insulin pump in May, did my first sprint triathlon in June, rode a 2-day 200 mile bike ride in July, did a bike ride from Seattle to Vancouver B.C. (180 miles) in August, did my 2nd triathlon in September, and found out a week before my 1st diabetes anniversary that I was pregnant with my first child.  Yeah, I guess you could say that I never let it hold me back!  It's definitely more work, but all the work for good control is worth it to be able to do the things I really want in life.

[quote user="Candace"]

My first year:  I was diagnosed in February 2007, on an insulin pump in May, did my first sprint triathlon in June, rode a 2-day 200 mile bike ride in July, did a bike ride from Seattle to Vancouver B.C. (180 miles) in August, did my 2nd triathlon in September, and found out a week before my 1st diabetes anniversary that I was pregnant with my first child.  Yeah, I guess you could say that I never let it hold me back!  It's definitely more work, but all the work for good control is worth it to be able to do the things I really want in life.

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I want that year (minus the pregnancy).

As a parent who has just passed the one year mark - April 11 - I know there are things I should have done differently. I know I had become obsessed with the numbers and testing and maybe should have laid off it a bit more. I am however happy I asked tons of questions and found Juvenation. I am happy I did not rely on the heathcare team for all the answers. I pushed for a pump and it has help alot. I read everything I could get my hands on but that was both good and bad.

I realize that it did not matter what I read because it was not me who had diabetes. I could only relay the information and hoped it helped. My son is 15 and that is part of the issues we had with being obsessed with the numbers.

If I can offer anyone advice from my experience it would be three things

1. Find support - in your community, online or anyway or anywhere you can - contact JDRF for diabetes get aways, seminars etc.

2. Learn about diabetes - everything you can - ask questions - lots of them and to people who are living it. Use your healthcare team to bounce things off of but you are in the hotseat and its your health or your childs health. No one can do it better than you. Don't be timid or embarrased to ask your healthcare team anything and if you believe you need something then make it happen or make them give you a reason why it should not to your satisfaction. You will encounter gym teachers, school officials, teachers, and nurses who will tell you they totally understand and while some do many do not. Make sure they do.

3. Let the guilt go - guilt has no place in diabetes. No one knows how they got it and frankly even if you know at this point it does't matter. Give yourself a break - help others who have just been diagnosed - share you story.    

 

I really like what other people have said.  I was diagnosed when I was 4 so I don't remember my first year that well.  I do wish, hearing now about all the clinical trials involving the newly diagnosed, that I could have participated in some sort of trial to further research.

[quote user="C"]

[quote user="Candace"]

My first year:  I was diagnosed in February 2007, on an insulin pump in May, did my first sprint triathlon in June, rode a 2-day 200 mile bike ride in July, did a bike ride from Seattle to Vancouver B.C. (180 miles) in August, did my 2nd triathlon in September, and found out a week before my 1st diabetes anniversary that I was pregnant with my first child.  Yeah, I guess you could say that I never let it hold me back!  It's definitely more work, but all the work for good control is worth it to be able to do the things I really want in life.

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I want that year (minus the pregnancy).

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Haha!  Yeah...over-achiever much? ;)  Actually, those were all things that I had planned for that year prior to my diagnosis (except the pump, of course) and I was really determined to not let diabetes make me throw out all my big plans.  That whole year was all about saying, "F-you diabetes!  I'm doing it anyway!"  I did it all with great BG numbers and great A1C's too...ah, the honeymoon period - I miss it!

I really like Keith's 3 points.  Excellent to remember no matter how many years you've been dealing with d!