Still Healthy After 54 Years Living With Type 1

(Editor's Note: After reading a letter to Diabetes Health detailing 37 years of complications and difficulties suffered by a person with type 1 diabetes, LuAnn Rodriquez writes her own hopeful and encouraging response about having lived 54 years with the disease.)

LuAnn Rodriquez has lived with Type 1 diabetes since she was diagnosed at 22 months old.

| May 8, 2008

I was diagnosed with type I insulin-dependent diabetes 54 years ago at the age of 22 months. A dear family friend suggested my parents take me to our family doctor and have me checked for diabetes after I showed some of the more common symptoms. I was unusually cranky and always hungry, but had a stomach that was hard to the touch as though food was not digesting properly. I was also always thirsty, drinking a lot and urinating frequently. Our doctor tested my blood sugar, and the result was high enough to indicate diabetes. He put me on 60 units of insulin per day and told my parents to take me to the hospital 30 miles from the little Western Kansas town where we lived to get a shot of insulin once a day.

Because I was such a small child, I had one insulin reaction after another on that dosage. My parents were forced to seek other medical advice when this doctor would not listen to what they were telling him or consider making changes in my treatment.

My loving parents then took me to another doctor, Dr. William Brenner, for whom they had a huge amount of respect. Dr. Brenner had grown up in my father's hometown, so my parents knew him well. He was a man of great character, compassion and integrity, who had survived the infamous Bataan Death March in the Philippines in World War II. His practice was in Larned, Kansas, a town 60 miles away. Dr. Brenner agreed to treat me as his patient, but only if my parents first took me to a diabetes specialist who practiced in Wichita, Kansas.

My parents, who were willing to do anything it took to aid my survival, did so. The diabetes specialist told them it was a wonder I had survived being on 60 daily units of insulin. He sent me home on two units of insulin a day. Both he and Dr. Brenner told my parents they had a choice: They could raise me as a "normal" child or they could raise me as a child with a crippling disability. To their credit and my joy, my parents chose to raise me as close to normal as it's possible for a diabetic to be. My life, to this day, has surpassed most expectations.

Very Different from Today

When I was first diagnosed, glass syringes, which had to be boiled for sterilization purposes, were used to administer shots, and blood had to be drawn at a hospital lab to determine exact blood sugar count. At home, blood sugar ranges were imprecisely measured by urinating on special strips. Fortunately, diabetes care has improved a great deal. One of the most important aspects of care is still the same: A person with a chronic condition needs to be her own case manager and to be very much in tune with her own body. During my life, I have had both wonderful doctors and those who treated all diabetics the same and were not interested in listening to me. As my own best advocate, I have changed doctors if needed. I consider it essential to be able to talk with and to my health care providers.

Having much to learn, there was any number of ups and downs as I grew. When I was young and had the flu, I'd end up in the hospital for a week or so. Now if I get the flu, I stay at home and take care of myself. I spent six weeks in the hospital as a sixth grader while our doctor worked at stabilizing my blood sugars. I was previously described as a brittle diabetic, and the blood sugar swings that go with that diagnosis are with me to this day.

Adolescence was a major challenge, and a time when I put on a lot of additional weight. My body had quit growing, but I continued to feed it as though I still were. College was my first time of being away from home for any length of time, and it necessitated a lot of quick learning. The importance of sharing my condition with those around me was reinforced. For example, when I didn't show up for class one day, my instructor called the "dorm mother," who checked on me and helped me get treatment for a serious reaction. If I had not shared information about my disease, I might have suffered severe damage from lack of treatment.

Except for one year of living with my sister after she graduated from college, I lived on my own from the time I graduated from college at 20 until I got married at age 47 to a man with custody of his four birth children. In those years of living alone, I learned how to handle both my food and my insulin needs. Some of that learning included times when I voiced resentment about being diabetic and chose to eat what I wanted, when I wanted it, while attempting to adjust my insulin dosages to my desires for food.

Workshop Made a Great Difference

Over the years I've had some seriously frightening insulin reactions where I was unconscious and convulsing, but not many and they have always occurred around members of my birth family, who have learned a lot over the years about how to help me when I was in no condition to take care of myself. These reactions led me to attend a weeklong diabetes workshop offered by Dr. Richard Guthrie in Wichita, Kansas, nearly 25 years ago. Much that I heard I'd already learned from living with the disease so long, but the information and the treatment plan that were new to me later made a huge difference in the way I have since lived my life and cared for my physical needs.

November 2007 marked 56 years of living with a chronic condition that is often crippling or fatal. Because it was true for that period of time, the doctors told my parents that I probably would lose my vision and would be lucky to live to the age of 18. From the time I was old enough to understand, medical personnel have preached to me about the importance of taking good care of myself and the possibility of complications arising from poorly controlled diabetes.

I was not always a willing listener. But over the years I have learned to be more self-disciplined largely due to my spiritual growth and a desire to avoid complications of diabetes as long as possible. I've also managed two trips to Europe and two trips to Hawaii without incident, and I've taught special education for 34 years--demanding but rewarding work.

My control of my diabetes has never been perfect, and I doubt if it ever will be. The only major complication I've dealt with so far is a microscopic heart attack, followed three years later by quadruple bypass open-heart surgery. A minor complication is having been diagnosed with cataracts on both eyes, which were removed more than 10 years ago, followed by laser surgery on each eye. Another blessing I thoroughly enjoy is that I currently have 20/15 vision while wearing prescription lenses.

So Many Good Reasons for Living

I consider the present length of my life and my general state of health to be gifts from God. But He also makes me aware that my attitudes about self-discipline (very important for many reasons) and giving my best effort without berating myself when what I try doesn't work are also important factors in my good health.

Give yourself reasons to live a long, healthy life – mine center on my relationships with God, husband, children, sister, dad, other family members and friends – and choose to avoid complications by (1) eating in ways that aid blood sugar control, (2) exercising mind and body, and (3) taking your medicines as directed. Don't live in fear. Diabetes requires serious respect and serious effort, but it doesn't have to be a quick death sentence. Don't give up on yourself – enjoy life to the best of your ability. I am saddened and horrified that I hear of so few diabetics who have lived as long and healthy a life as I have, and I want to say to all who read my letter that life with diabetes can be good. Mine is!  

LuAnn’s Secrets to Living Well With Diabetes

1.    Focus on your relationships with God, family and friends to give yourself reasons to live.
2.    Control your blood sugar by what you eat, get mental and physical exercise, and take your medicines.
3.    Do not live in fear

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Categories: Blood Sugar, Diabetes, Diabetes, Food, Inspiration, Insulin, Living with Diabetes, Losing weight, Personal Stories, Syringes, Type 1 Issues


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Comments

Posted by AnnetteUK on 8 May 2008

LuAnn ..it seems you have written my diabetes story ... I am now in year 51 with Juvenile Diabetes with no major complications at all. When diagnosed in the 1950's my parents, then I, were told I could live 20 years with this horrid disease. I think I have beaten the odds greatly. It has not prevented me living my childhood dreams.. including emigrating to America from England [on my own] 6 weeks after my 21st birthday. I wish I had saved the barbaric glass syringe with the long thick needle that I had to boil and sterilze every morning. What an adventure my miraculous life has been and still is.
Was told to always live with my parents.. never to marry as I should never ever get pregnant! I did not listen .. have been married 46 years, have two daughters, four grandsons and have travelled greatly, including to England at least once a year and various areas of America [including KS]
The 45 years on injections were a challenge as far as travel went but the last 6 years on the insulin pump have been a super bonus. Like you, I have seen awesome changes in treatment and feel blessed by it all.
I am in Connecticut and volunteer at a local Joslin Diabetes Center.

Posted by merileek on 9 May 2008

Congratulations, LuAnn...and Annette (UK...)

After 48 years with IDDM, in tight control, with multiple shots and split basal doses of Lantus, lots of adventures, as you've experienced. Fortunately, no complications, and I'm thrilled to be enjoying my husband of 35 years and, in retirement, a new career presenting programs with my singing, acting and writing talent. I, too, enjoy my volunteer work.

Like you all, I well remember those days of boiling the glass syringes and the metal needles, as well as the urine testings with the 2 hour lags.

How lucky we are to live in a time of technological advances...and electronic communication...so we can share with one another.

I live on Long Island and, occasionally, get into New York City (where I used to work.)

Stay well, and keep thriving.

Merilee

Posted by czxtina on 9 May 2008

Thanks for the inspiring stories you have shared. I, too have t1 diabetes, trailing behind you by +-20 years.... it takes a certain attitude and disposition, you are right, also blessings from God and genetics, to make it this far, along with the kindnesses and caring of family and some friends. I wish after 35 years being diabetic that I had even better bg's, but they swing up and down like crazy; always have! A1c's are acceptable: high 6's. I've been on the pump 16 years now, and still have swings and lots of daily lows. I get my health care as a military family member, and am thankful for this, although as LuAnn posted, it certainly is up to us to manage this diabetes. However, after pricking my finger several times every day and finding that I'm in the 50's or 40's and then find it to be elevated later, is enough already!!
I lose precious hours sometimes recovering throughout the day. I am unemployed, but supported by husband. I give you the most credit, you who work full-time and manage your t1 diabetes! It requires quite a lot of attention and time. I don't know how i would be able to do it if I worked. Being the mom of 2 kids and volunteering at their schools is about as much as i can handle on top of diabetes wellness management.
I agree that living with family and friends who know you well enough to say something when you act weird and alert you to a low bg, is most helpful.

Living life joyfully and hoping to be rid of brittle diabetes. When's that patch coming out? The one we can paste on our extremities, and will monitor blood sugar and deliver insulin (or not) as needed? hahahaha! Dreamin' and hopin' and wishin'
C

Posted by Anonymous on 9 May 2008

This article was very informative and extremely helpful. I can only imagine the struggles and adversity that LuAnn Rodriquez had to cope with, dealing with diabetes basically, her entire life.

This woman is an inspiration to everyone,with her positive attitude, religious beliefs, and close monitoring of watching her diet and insulin levels, she has achieved much success with "LIVING WITH
DIABETES."

Posted by Anonymous on 9 May 2008

LuAnn and others: thank you so much for making "newsworthy" your good health! I have been type 1 for 15+ years and have that constant low-grade worry about my long term health. Of course nothing is a given, but it is wonderful to hear of your success in staying well. Cheers to continued good health for all of us!

Posted by Anonymous on 9 May 2008

I am a newbie to type 1. I was diagnosed just a little over 5 months ago, and my 20th birthday is next month. And hearing your story absolutely is inspiring to me. First of all, I admire all of you who had to use the glass syringes and urine test strips - and I thought it was bad NOW! It truly is a blessing to hear how adventurous and...how do I put it...successful your life has been, even with diabetes. I admire you for having all of your priorities straight. I pray that one day, I will be able to inspire others with my diabetes life story.

May God bless you,
Karen

Posted by Anonymous on 9 May 2008

IS SO GREAT TO HEAR ABOUT OTHERS WHO HAVE TYPE 1 DIABETES. FOR A LONG PERIOD OF TIME. I HAVE HAD TYPE 1 DIABETS FOR 43 YEARS. I HAVE HAD NO COMPLICATIONS UNTIL THIS LAST YEAR WHEN I GOT RETINOPHY IN MY RIGHT EYE, BUT THEY HAVE COME A LONG WAY IN TREATING THAT, I CAN SEE OUT OF THAT EYE EVEN WHEN MY RETINA DETACHED TWICE, THIS HAS ALL HAPPENED IN THE LAST 6 MONTHS. I HAD AN AUNT WITH TYPE 1 AND SHE DIED AT THE AGE OF 56, WHEN I WAS A GIRL I THOUGHT I'VE GOT TO MAKE IT PASSED THAT, WELL I'M 53 AND I KNOW I WILL GO WAY BEYOND THAT. LORD WILLING! THE KEY FOR ME WAS ACCEPTING THE DIASESE FROM THE VERY BEGINNING AND HAVING GOD IN MY LIFE WAS A BIG HELP. I CHOOSE TO LIVE A NORMAL LIFE AS MUCH AS POSSIBLE. I HAVE A WONDERFUL HUSBAND AND 2 CHILDREN A BOY AND GIRL, 27 & 29. AND LOTS OF FAMILY SUPPORT. MY AUNT NEVER DID HAVE ANY CHILDREN. I FEEL VERY BLESSED TO HAVE THEM, I DID LOOSE MY FIRST BABY AT 7 MONTHS. BEST WISHES TO EVERYONE.
GILBERT, ARIZONA

Posted by AnnetteUK on 9 May 2008

I often get upset that all diabetics are portrayed as one .. meaning type 1 and 2. It goes on about we were/are overweight, were fed badly and never exercised. I want to scream sometimes that "WE WITH TYPE1 WERE SKINNY KIDS NOT OVERWEIGHT MIDDLE AGED PEOPLE" I just want people to understand that we did nothing at all to cause our own disease... that it was/is an auto-immune disease. Also ... when there is a discussion on the TV about diabetes it is always pointed out about the horrid complications bad control can be .. as though it is a given .. when there are quite a few like us that have had it since ancient times and are pretty healthy olde broads :-)
I love the "Walk for the Cure of Juvenile Diabetes" every year and look for parents with young children with our disease..I let them know that their child can live a very long life and live their dreams. That there is no barrier. It always helps the parents. In the 50's it was horrifying for parents :(
My best drugs besides insulin has been my sense of humour and constant laughter.. and it is totally free, non toxic and good for us physically and mentally!
~Annette~

Posted by Anonymous on 11 May 2008

I have been a Type 1 for 24 years. I am now in my 60's. I have put on a lot of weight over the years -done my fair share of "cheating" and after hearing so many good things about the "pump" I decided to try it. I found it very confusing and complicated so I returned to taking shots.
I found the article so interesting. Since I don't know a soul who is a type 1 I will continue to look for more news from this web site.

Posted by Anonymous on 12 May 2008

The main reason these people live long and healthy is....genetics. "Good control" is a new concept in diabetes care.

People like this tend to still create some insulin/c-peptide from time to time (hence the brittleness and severe lows), and also likely have genetic protection from complications (those diagnosed under age 5 seem to).

I also fit into the above categories (brittle, prone to severe lows, very little insulin requirements, and young age at diagnosis). I also have no complications after 24 years of Type 1 diabetes.

Meanwhile, I know Type 1's with severe complications despite an A1c of 7 and 4 years of the disease.

Don't by into the myths of "control". I have been trying to "control" this disease for my whole life. There is no technology that can replace a pancreas. There is also much more at play when it comes to Type 1 diabetes.

Posted by Anonymous on 15 May 2008

I'm a mother of two diabetic children and thought your stories were great. Reading them has helped me see hope for a good, healthy and happy life for my children. It is good to know not all type 1 diabetics suffer all those awful complications. Good health to you all! Janet/Puerto Rico

Posted by Anonymous on 16 May 2008

I just wanted to post as a worried parent, I found this article thoroughly refreshing.

As you say AnnetteUK, there is a lot of bad press about bad glucose control = bad complications. It makes it feel like it's a given that there will be problems.

My son is Type 1, diagnosed aged 3.5 and is now 5. I worry every single damned day about complications as I've not managed to get good glucose control yet, and hope the pump and CGMS we are applying for now will help control them better. Because of the bad control at the moment, I worry tonnes about when he's older

Thank you so much for putting my mind back to rest more. I might find I sleep a bit better tonight :)

Kathy
London (UK)

Posted by AnnetteUK on 16 May 2008

Great hearing from new type1 diabetics ... and knowing that it can/has helped the mother of two type1 children hear 'our' survivors stories! This has been my aim for a number of years.. those of us in the 50 year DM group want to scream this out.. you can survive longer than a non-diabetic because #1 we take better care of ourselves from our youth!
By the way ... I am writing to you from Florida... am here with my hubby, a daughter, a grandson and his 'friend' ... crikey ... the adventures still go on :)
Have a good weekend and God Bless you as He has blessed me.
~AnnetteUK~

Posted by Anonymous on 2 June 2008

I have had t1 since 7 years old (40)years. I have found that the key to living with disbetes is to get to know your own body! Once you know your body then learn to listen to it. I have changed doctors many times because they thought they knew more than me. I am a nurse of 16 years and saw diabetic complications all day. You have to have the I will survive mentality and now days things are much easier than the old pee in a cup and use a clinatab test.I am a pumper and since my pump I am able to survive when they have said "it does'nt look good!" I have had a rough yea,r but becuase of a wonderful podiatrist who did surgery I have all my toe. I would also not recommend going to a surgeon 1st thing for feet issues. They are trained to cut and I feel that is the worst thing for a diabetic. Life is good. Much better than it looked in 1973. Love your family, believe in a higher power and live life to its fullest

Posted by Anonymous on 26 July 2008

Luanne's story and the comments that follow truly are inspiring. I became a type 1 from a defective antibiotic only 7 years ago. Brittle yes, not due to food buy due to the emotional anger. To me control is nothing more then a crap shoot day to day. I exercise 5 times a week, talk to a therapist and still I can not get past the anger. A major drug company knew this was a side effect and did nothing until 2006! It is my second full time job to take care of myself. My 3rd job is trying to tell my family what I can and can not eat-and trying to explain the difference between type 1 & 2. I need more of these stories. I need hope! I am 54 years old and all the clinical trials to find a cure are for people less then 45 years!
I was over the hill the day the drug did it damage to me! Please keep all these triumphal stories a focal point. Thank you everyone for sharing. It may have just lowered my bld sugar by 50!

Posted by tjkj on 18 May 2009

`Luann I have had diabetes for 55 years. It has not been a picnic but Thanks be to God I am still living. Sometimes I wish I was'nt but that is in Gods hands.
I am grateful for all the new meds and pumps for the young type 1 diabetics. Without my pump I would be in trouble. If all type one diabetes could be on a pump it would be a big help. I have heard of 2 year olds that are on the pump. The diabetes is getting me down but I still fight and pray about it. Thanks for your story it has helped me a lot. Tom Jones

Posted by Anonymous on 26 May 2009

Thank you. I found your story easily and quickly. I NEEDED to know how long a insulin dependent diabetic could live. Because last Aug. 4 09 I lost my better half at age 42.
He remembers his Ma telling him when he was around one month(not sure) His beloved Mother who he is with now...had to grab the darn insulin filled needle and give him his first shot.
the doc just stood there with it, like he didn't care.
Well thank you again.


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