Profile for MarieB

In 1967, my parents decided to send me to private school and in September I had the required physical exam. Just after the exam, my mom took me down to a lab, and I had my blood taken. When I asked her why, she said something about diabetes, but added, “don’t worry, you don’t have diabetes”. A few days later she said I had to go to Children’s Hospital in Washington DC, and did not tell me why. When I got there, the receptionist looked at me and said, “oh this is the little girl with diabetes!”. Everything turned black as I got in the elevator. I had on my favorite Madras plaid shirtwaist dress and Bass Weejuns with the pennies. It was September 20.

I was there for two lonely weeks(which happened to include my birthday), it being a long drive from our home in Virginia. Sure, I got the orange and the Clinitest test tube kit, and the huge gauge needles and Lente insulin. Every morning they lanced a fingertip with a torture knife that looked like a miniature scythe and smear the blood on a microscope glass slide, and in a matter of days, my fingers were hamburger. Nurses came at meals and told me to pee and 5 minutes later yelled at me to go again so they’d have a fresh sample. I cried every day. When I finally got home, my mother tried her best to keep me on the regime prescribed, but it was difficult to see how to use the results of a urine test to apply to a dose change when you were taking one shot a day. I didn’t keep up the testing for more than a year, and that just about coincided with my moving from a pediatrician to my mother’s internal medicine PCP, whom I ended up going to for more than 10 years. During this time, I was lucky not to ever need any emergency attention because of my diabetes. I also didn’t meet anyone else with type1.

When I was 25, I had a serious fall in a bathtub while I was in a motel on a business trip in NJ. I managed to get to the phone and call 911 before I passed out. I had ruptured my right kidney. I was in the hospital a very long time, and when I got out, I decided to take some good advice and go to an endo. There still wasn’t SMBG, and when it did appear in the mid 80s, I got one, an Ames Glucometer. It was as big as a brick! Not something to take with you. But it did give me an approximation of what my bg was, and I began a regime of 2 shots of Lente a day, in a combo shot with a sliding scale of Regular. I was on this until I got married and we soon after moved to Southern California, where I had the best endo ever, Dr. Art Charles, head of the Endocrinology clinic at UC Irvine.

Dr Charles had a long grey ponytail and drove a red Ferrari. He did an enormous amount of research. He wanted me pumping and when Disetronic came out with the waterproof one, I gave in. I’d already had hemorrhages in both retinas from peripheral diabetic retinopathy, and was in the process of getting all my periphery lasered out. I went in the hospital for 48 hours, where they checked my bg 48 times. The Disetronic rep came and showed me how to do everything, and I went home a bit nervous, but feeling like I had the support of a team. I got a card which showed I was Disetronic customer number 113. My first set change I did while on the phone with a Disetronic rep & fellow HTron user, and that was a great relief. In those days, you couldn’t take your pump off to take a shower or anything, you had something called a “shower bag”, which was basically a plastic bag hung from the shower head to put it in, suspended above the spray. I’ll never forget getting my first infusion sets with the quick release.

I kept the Disetronic through their transition to Accu-chek. I liked the pump and especially the ultimate security of having a second back up pump (they unfortunately don’t do this anymore). They even next-day-airmailed me a second pump to Tortola, British Virgin Islands when I got water in mine from a unseen hairline crack, so I wouldn’t be without a backup pump for more than a day. I have always found their customer service to be prompt, kind, patient, and smart. So I have never tried another brand in the over 25 years I’ve pumped.

In 2008 I was searching for info on how to deal with the complete wackiness my diabetes was doing as a result of my aging, and I stumbled on TuDiabetes. I’m sure many of you may have had the same feeling as scores of other PWDs seemed to gather round me, offering suggestions, support, friendship. In those days, @askmanny welcomed all the new members. I was inspired by the smart topics, creative artwork, inspiring videos, and the deep level of sincere care and love everywhere on the site. @Doris_D,@Judith_in_Portland, @Joe, @Andreina_Davila, @scott6, @kathy and many others were showing me the strength of the fabric of community here. But no one besides @askmanny had the profound effect on me as Sandy Barragan. Her selfless giving to others here, in spite of her own failing health, I will never forget. When she died, I vowed to myself that if I could do 1% of the work she did to create a strong , safe place for PWD to get help and information, it would be time well spent. I still get emotional, just thinking about her and our other TuDiabetes Giant @jrtpup, now our TuDiabetes Angels.

So to say I’ve made deep friendships here is only one of the blessings I’m grateful for. I’ve learned a LOT about all kinds of diabetes, been given the courage to try to make changes to improve my health, and kept my a1c below 7 for the past 7 years. I’ve enjoyed the fun times we have here and the Advocacy Initiatives we sponsor to increase diabetes awareness for all PWD. I loved being asked to make a quilt to represent us at CWD’s “Friends for Life” and getting folks excited every year to do The Big Blue Test. I’m proud to be an admin here, and happy to walk beside you all. As Sandy always said, “together we are stronger”.

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Marie we all love you

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Thank you for sharing Marie…your journey touches deeply! :hearts:

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What a wonderful story, it brings tears to me eyes. I really think that this sort of story brings us together. You will never be just a picture or name to me, you will always be a dear friend who I care about.

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Great story! You are clearly a tough cookie! Thanks for sharing @MarieB!

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Marie,

Not only is this a fabulous orientation to you, but it’s a progression and history of the changes in diabetes care.

Thanks for giving so much of yourself to so many to help us through this journey with diabetes. I’m a better supporter of others because of the example that you set.

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Awe…the good old “brick”. I remember cutting the test strips in half! 2 for 1!!! Just needed enough strip to cover the window.

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I got tears in my eyes Marie, thank you for sharing your story and your profound courage.

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Marie, I think they sold this torture knife to the hospital where I had my hearing implant! It caused me to bleed profusely, I had blood running down my arm after the first finger stick. The second one I also bled a lot, but not quite so much. My fingertip was bruised for a week afterwards and I could not use that finger for anything. Imagine daily life with one of these torture instruments. I was so glad my hospital stay was so short.

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Thank you for sharing your story. You are incredible.

Marie, thanks so much for telling us your story! It was a hectic time you experienced, and you had old equipment that was unreliable. I stuck with the urine testing while you were using the lancing device to test your blood. I can certainly relate to those early years.
Your story is well written, have you ever thought about writing a book, with pictures? I would love to read it, if you did!

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Great story Marie and shows what a wonderful and generous person you are! Thanks

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@MarieB, I’ve worked with you for several years, but know so much more about you from reading this!! Thank you so much for sharing!

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What a beautiful story of a beautiful person!
Thank you!!
:hearts: :hearts: :hearts:

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Marie, my dear friend. I so enjoyed reading this and have been thinking about it. The historical aspect is truly fascinating and only because I have a vivid imagination, can I begin to conjure images of what you had to endure physically. I have seen pictures of some of the old devices and lancets—I think you captured them perfectly.

The fears of a child alone and far from home are a universal common to the human condition, aren’t they? But to endure that while you are ill and need to engage a steep learning curve in a sometimes hostile environment is a nightmare, indeed.

I’m so glad you found the great medical team eventually. That must have been a huge relief. And you know I feel as you do about finding TuD. You captured that perfectly, too: “…as scores of other PWDs seemed to gather round me…” Yes!

I read your passage about Sandra and Pup with tears running down my face…Thank you for writing this. Thank you for Being There for all of us. Thank you for Being…All Bright Blessings to you…xx000

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I love you Judith.

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Wow that is an incredible story…I admire your tenacity …thank you so much for sharing your story. I am looking forward to getting to know everyone!

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thanks and welcome to our community. this is a wonderful family here and I love being here with everyone.

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@MarieB, what a story! Thank you for sharing it with us, but also, thank you for sharing you with us! You have such a wonderful memory for the people and past conversations here on TuD, along with remembering our TuD Angels.

Every time I see your posts where you link to a discussion that might be helpful to someone who is seeking answers, I thank you mentally for being such a positive force.

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Today I turn 64 and decided to post my profile.
Profile for Paul (Newbeach)
Diabetes.
I was wrongly diagnosed with Type 2 back in late October 2008. An appointment with my still current Endocrinologist in December that year changed the diagnoses to LADA because “Blood Tests” showed extremely high GAD and IA2 antibodies with low c-peptide and insulin levels but a high blood glucose level.
By exercise and diet I only delayed the injection of insulin until the end of April 2009. My progression to Type 1 occurred within six months and I was diagnosed as Brittle Type 1 in 2011. My HbA1c is usually just under 7 but my blood glucose control is poor.
My son was diagnosed with “Juvenile Diabetes” back in 1996 at the age of 13. Although there was no history of diabetes in my wife’s or my family’s background, my maternal grandmother had other autoimmune diseases.
Looking back I suppose that I was a prime candidate for developing Type 1. I had the genetic background, high levels of antibodies which had shown up in blood tests years previously, and a son with Type 1. Why a head cold then a tropical virus triggered my fast progression to diabetes I do not know? I had been living with these antibodies for years and had many head colds but that October I drew the short straw and was hospitalized with a reading of 27.2 mmol/L (490mg/dL).
Because of my age and because no ketones had shown up in tests, I was diagnosed as Type 2. Although I was given insulin to bring down the high BGL, the meals were not the foods that should have been given to a Type 1 patient. As a result BGL climbed very quickly to the high hyper levels two hours after meals.
After three days with little improvement, I convinced my doctor that I had to be active to stabilize my BGL . I was released on the provision that if my BGL were above 11mmol/L for too long I would go back into hospital.
It would be a difficult three years before I started to understand how to manage my diabetes in the best way that I could. Although my HbA1c was always about 7, within two years I developed peripheral neuropathy with my feet. Most nights the joints in my feet would ache and pain when I walked then burn as I tried to get to sleep. Of a morning it would feel like I was standing on a thousand needles as I got out of bed.
This problem was tracked down to the extreme fluctuations with BLG and was solved by allowing my BGL to be below 6mmol/L and falling before eating and matching insulin and the GI of my meal for that day’s activity. Even today I still have feet problems if I stay in the hyper zone for too long or BGL fluctuate too much. After three days of tight control my feet feel normal again.
Although I started with MDI then DAFNE (Dose Adjustments For Normal Eating), I found that I achieved the best results by injecting according to my day’s activity and meter readings. I go from not using insulin for over 20 hours when I have been working hard for several days and having good BGL to over 100 units when I am doing bookwork and then I struggle to keep BGL out of the Hyper zone.
Occupation and Education.
I own a small cane farm and fish to make a living. In a past life I was a Sugar Chemist with a Certificate in Sugar Chemistry graduating back in 1975. This was a 4 year University standard course involving six months study then six months working in laboratories at sugar mills. During my study years, I obtained a Professional Fishers Licence and fished on weekends to keep the money coming in.
I worked my way through the ranks from Lab Analysis to Shift Chemist Supervisor and left as Assistant Production Manager late in 1991 to establish a Barramundi Hatchery. Fish are my true passion. (My College pass for Senior was not sufficient to study Marine Biology at University so I opted for Sugar Chemistry)
A major flood followed by drought and poor seasons combined with low sugar prices saw my dreams of the Hatchery been delayed as I worked full time on my parent’s and brother’s cane farms. A family fall out and then finally Diabetes saw the Hatchery being mothballed as it was established on their land.
I kept upgrading my Professional Fishers Licence and now lease symbols for the different fisheries which allows me to fish the coastal fishery of Queensland. Fishing with nets is hard work but it keeps me fit. What you enjoy is not a burden. My insulin usage goes right down and BGL becomes stable when I am fishing.
The last time I worked as a Sugar Chemist was September2008 when the first symptoms of diabetes began. I did not have the typical symptoms of thirst or constant urination but I lost weight quickly, lacked energy and my thought process and decision making was very much impaired. The sudden loss of weight I had put down to hard work and the lack of energy due to the virus. I greatly increased the carbohydrate and sugars in my diet to regain weight, only to find my symptoms became worse. I rang my doctor only to be told that there was a 3 week waiting list. I knew I could not wait that long so I insisted that I needed to rule out diabetes and asked if his nurse could take a blood glucose test. After a three hour wait, I received my wish but not the result I wanted; a blood glucose reading of 16.4mmol/L. I was told that this was only a random test but still no appointment for three weeks.
I knew this reading was exceptionally high as I had not eaten for hours and had been working hard that day. I managed to purchase an Accu-Chek Performa meter just as the Chemists’ was shutting. The reading of 27.2 mmol/L at 10.30pm that night put me into hospital.
During the three years after I was diagnosed I had four different doctors, all with very different ideas about the best way to manage my diabetes. Although I had a very good Endocrinologist, I only had contact with him twice a year. During this period I saw several Diabetic Educators (nurses who specialize with diabetes) but I was relying on these professionals to solve all of my problems.
Although everyone’s diabetes may vary, I knew that I was a very different case. After two years when my feet started to cause problems I knew that I had serious issues to deal with. So began a very intense research program into diabetes. Although I have not studied physiology of the human body, my chemistry background helps me understand the why’s and how’s of diabetes. I know the right questions to ask if medication have to be changed. I will only take antibiotics if they are absolutely necessary as they usually kill the good bacteria as well as the bad. After the course is finished I take Probiotic and because I am not sensitive to FODMAPs, I eat foods high in galactans and frutans to reestablish a healthy intestinal microbiome. “What you eat is what you are” and the bacteria that colonize your digestive track play an important roll with your overall health.
Although diabetes came as a shock and changed my life, it has not stopped me from fishing. A healthier lifestyle has been the result and I am waiting for the day when non invasive continuous glucose meters are available for those who can not use pumps or CGM.
TuDiabetes is a site that has helped me through my journey with diabetes and I take inspiration from all who live with this chronic disease and share their stories.

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