How Did Your Parents Deal With Your Diabetes?

By Richard157 Latest Reply 2010-09-09 12:23:05 -0500
Started 2010-09-05 11:18:08 -0500

Those of us who were diagnosed many years ago were "ticking time bombs", but some of us survived and are doing very well now, without serious complications. Most type 1 diabetics had terrible complications back then, and many died. That is why our life expectancy was not good. Two doctors told me in the 1970s that I would probably not survive beyond my 40's. Now I am 70 and very healthy. It seems like a miracle sometimes.

My parents did not have a clue in caring for me. There were no books on the subject that would have helped. The doctors knew nothing that helped, and there were no meters or pumps, etc, available. Test your urine on the stove, poke yourself with the insulin from a pig, and pray to live another day. My mother saw that certain foods made me sick. It was high blood sugar, and it made me feel nauseous. We learned that I should eat small portions of pasta, potatoes, breads and even fruit. It was all trial and error, with no guide to help us. Maybe it was good genes that we survivors possessed, maybe it was the C-peptide in the animal insulin that protected us, there is no way of knowing. Why were some of us spared, and others not?

My parents would not allow me to participate in gym in school, they limited me in many ways, and thought I should not go to college. I was so "brittle" and they saw me have many hypos and seizures. They had no confidence in my ability to lead a normal life. I developed a persecution complex and had very little confidence in myself.

I defied their authority and went to college for 6 years, married and had two kids, became a college professor and led a normal life, accomplishing almost everything I wanted to do. Every step of the way I doubted that I would be successful in my attempts. I hesitated, but I forged ahead, with good results. That lack of self confidence will always be part of me. Even when I am successful at something, I feel I should have done better, and am somewhat disappointed in myself. I think that my parents' lack of confidence in me made me this way. I do not blame them though. I would probably have done the same thing, if I was in their shoes. They had no guide or advice to help them and they did the best they could. I loved my parents very much. They have both passed on, and I remember their love and kindness. I have no ill feelings or resentment of any kind. Time marches on, I want to see how long I can survive without complications.

What do the rest of you have to say about your parents and their dealing with your diabetes?

12 replies

Richard157 2010-09-08 09:09:09 -0500 Report

Thank you monkeymama and Crashnot, for your stories.

Crashnot, I participated in the Joslin Medalist Study last year. They are studying type 1 diabetics who have lived with their diabetes for 50 or more years, and do not have any serious complications. I was told by the study coordinator that there had been several participants who had not taken care of themselves and ate whatever they wanted to, but they did not have diabetes related complications. There were also some participants who had taken very good care of themselves, and DID have complications. The great majority of type 1 diabetics do have complications when they have poor diabetes management, and the ones who take good care of themselves typically have much longer and healthier lives.

Crashnot 2010-09-08 15:24:58 -0500 Report

I read the Joslin write-up with great interest!

I shouldn't say I'm a badly controlled diabetic, I am just so erratic with my tests. Blame it on a combination of being busy chasing two young kids around, keeping up hundreds of feet of gardens, a good bit of acreage, and trying to second guess how my activites will affect my carb intake.

This morning I woke up at 10.5 (using the Canadian increments, just think of it as an A1C number or else multiply it by 18), took a correction, ate a small breakfast with an appropriate bolus, shot to 14.5 two hours later and did some gardening which dropped me to 2.3 (41). So I had a snack along with lunch, and an hour later I was 20.5 (369). I count my carbs, I eat proper foods, but I just can't get off the huge rollercoaster numbers.

The first month I was on pork insulin I was actually very steady, then went back on Humalog for a month, and haven't been able to get my numbers back in line since then, even back on pork. There MIGHT be a chance my thyroid is starting to cause problems though, so will see how my next blood work pans out.

In any event, the foundation is there for good control, but odd things just keep throwing it off.

Richard157 2010-09-08 20:07:36 -0500 Report

I wish you could go to Joslin for a complete workup. You would need to stay for awhile, maybe a week or so. They take people like you, with very difficult control, and turn them around. It would require 100% cooperation on your part and it would take time and patience too. You cannot keep having those highs and lows indefinitely.

Crashnot 2010-09-09 12:23:05 -0500 Report

It is pretty exhausting! And I'd like to hang on to my lack of complications as long as I can! I'll have to post them a note to see what kind of costs they'd have. With the Canadian health coverage here we don't carry any insurance (self-employed, waaay too expensive for extras!), so it would be out of pocket. But long term I think it would be worth it.

Crashnot 2010-09-08 08:40:32 -0500 Report

I was diagnosed in 1968 before I turned 1 year old, so grew up in the '70s and had the same challenges of figuring out what my sugars were from day old urine tests.

Luckily I had a phenomenal doctor, who led the tide in teaching diabetics to live with their disease, not for their disease. So I grew up as food exchanges were coming of age (developed by him and his dietician).

I suppose a grand result of this is my mother pushed me to take part in everything that caught my interest. As a young teen and beyond I did youth trips for 4-H and church to DC, San Antonio, and of course the Minneapolis State Fair Grounds, without parental supervision. And I not only lived, I thrived. That despite spending a bit too much time at the Fudge-By-The-Pound booth during the state fair! (must have been thanks to the All-You-Can-Drink-For-A-Dime Milk booth right next to it???) :-P

In college I spent a month traveling in Europe for a class, and really didn't make use of my glucose monitor, but that worked out fine too.

Both parents encouraged me to be in charge of my health, always pack plenty of snacks and carry extra supplies, and be aware.

I can't imagine any diabetic leads a perfect life, but somehow mine worked out fine. As the specialist I met last week told me, "You're a person most diabetics would hate. Your control sucks, your sugar is all over the place, and you don't have a single complication after 42 years." I'd call it good genes and good luck!

I guess the early travel bug got in me for good, as in my 12 years of work life I did extensive travel on my own and now look forward to taking my two children on more trips as they get old enough to enjoy them.

Getting back to the parent subject, we did have a structured style at home, but not in such a way that it was limiting. Rice Krispies and Cheerios were breakfast standbys, no sugar on top. Kool-Aid was sweetened with saccarine, and my breakfast juice was watered down.

My baby sitter as a toddler as a gal who was getting her nursing license and could deal with emergency injections for either insulin or glucose. Our next sitter was a girl who could handle my surly-low sugar attitudes and get me fed if necessary. Mom was stay-at-home and made sure I had three proper meals a day and three snacks, always at the right times to the peaks in my insulin (only took long term lente for so many years, imagine what my sugars must have been like!!!). After a sweet snack like chocolate chip cookies, a few laps around the yard were required for all kids in the house, diabetic or not (still use this on my own kids today ;-)

We were so dependent on what we thought we knew, and had no idea how much we didn't know. But for the lucky ones of us, all is well. At least until the next fudge-by-the-pound booth comes along!!! I'll be ever grateful though to my persevering mother who had to deal with pinning me down to give me injections, force feeding me when my sugars were low, driving me the four hours to my endo in Minneapolis 4x a year, rain, shine or raging blizzard, for 20 years of quarterly appointments until I entered college, and for having the faith to send me out into the cold, cruel world to discover I could be whatever I wanted to.

Lisa in Ontario

monkeymama 2010-09-07 14:08:48 -0500 Report

I grew up knowing and seeing my mom with her diabetes. My dad recently this year was diagnosed has having type 2. My dad has been an amazing support person and we help each other out. We talk twice a week or so and compare our numbers. I manage my diabetes via a pump but he is using Actos and is doing EXCELLENT now. My mom on the other hand is the picture of "what not to do" with your diabetes. I've watched her just not care. She literally picks and chooses when she wants to do anything with her diabetes. This very truthfully how she is temperament wise. ANYWAYS, I try to set the example and help guide my dad when he has questions or problems with his BG. I help him trouble shoot if he runs into a snag, meal ideas, and more. With me in medical school/nursing school, my dad always says he knows he can call me if in doubt and trust my knowledge. him for this !!! My in-laws are a different story though. One could give two sqots and my mother-in-law is up my butt (at me and behind my back) if she don't like how I am handling my diabetes and that.

Richard157 2010-09-05 19:49:51 -0500 Report

Thank you friends, I really appreciate your comments!

I wish some of the members who were diagnosed when they were young, would tell about their parents' reactions and how they deal with their diabetes. I have been getting many replies like that on another forum.

Gabby, thank you for telling us about your family.

GabbyPA 2010-09-05 18:32:35 -0500 Report

Well, being diagnosed as an adult the only one who has had to deal with it is my mom. My dad was a type 2 late in life and my brother was a type 2 early in life. Both of them are gone from my life, and I do miss the input I am sure they would offer.

My mom really helped me a lot. I got us on track, but she supported me and was willing to try almost anything I was doing to take control of my diabetes. She frequently stood in amazement at the progress I made and has always expressed her pride in my accomplishments. She has been a great pillar of strength and encouragement to me.

realsis77 2010-09-05 15:36:02 -0500 Report

What an inspiration you are to us all! I loved your story and how you overcame the obstacles in your life! God bless you!

Kaiyle 2010-09-05 12:04:49 -0500 Report

What an inspiration you are!!! You are truly a blessing with an amazing testimony. I am so grateful to God for satisfying you with long life. We are fortunate to have you share from your reservoir of wisdom and experience.

MAYS 2010-09-05 11:40:53 -0500 Report

This is very interesting as well as educational (not to mention historical).
As always, thanks for the enlightenment of early diabetes techniques and procedures from an actual diabetic.


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