Trust yourself

Kathy Putzier and I have been friends for at least 8 years. We became friends because we share a love of classic rock music, including Dylan, Neil Young and all the rest. After we became friends, we found that we have been people with diabetes for almost the same amount of time. In addition, we share similar journeys with our diabetes, which includes resignation, neglect and coming to terms with diabetes (I have found this is more common than not, for people diagnosed in the first half of the 1970’s). So today please welcome my dear friend Kathy Putzier with her first guest post on RADiabetes.com.

Trust Yourself
By: Kathy

I am a child of the sixties where the phrase “question authority” was a cool, hip way to sanctify rebellion ranging from tipping the vending machine upside down to calling the police "pigs’ to having a "sit-in’ on the steps of a government building.

But, now as a person living with diabetes for over four decades, and a few other co-morbid conditions in the last 5 years. It is my duly and obligation to myself to question authority.

My First Doctor

My hometown on the Minnesota prairie consisted of about 5,000 people. It was served by two family practitioners who were considered pillars of the community - the top of the pyramid. People nearly bowed to them as they walked by. Gosh, one of them even drove a Cadillac. No one ever dared to challenge these doctors with a question, an observation_ or a simple general comment. What they said was the absolute.

Of course, I took that attitude with me into adulthood.
I was diagnosed with diabetes in 1974, and the doctor told me not to read any books on diabetes because it would “only confuse me”. Yes, sir.

Minneapolis

When I moved to Minneapolis in 1975. After graduating from college. I discovered that the library had a magazine called ‘Forecast’. Back then it was more of a pamphlet. But on the days when I knew the new issue was coming I’d go over and sneakily read it at one of the darker back tables. God forbid anybody would catch me. Since I went home to visit my parents frequently. I was still going to the doctor who’d diagnosed me. After reading in Forecast about taking 2 injections rather than one per day. I timidly asked him what he thought. "Nah Its’ not necessary” Phew. I’d been given permission not to hassle with a second shot because the doctor said so.

Internist

After a couple of years I finally switched to an internist here in town. Since I had no history with him. I felt I could be a bit bolder in voicing my opinions. After all, in a metropolitan area, I could simply find another doc if I didn’t like this one. This was about 1978 or so and multiple daily infections had not quite saturated the diabetes care scene.

I clearly remember seeing a book at the store called The Diabetes Self Care Method by Drs. Lois Jovanovic and Charles Petersen. I bought it immediately and read it in one sitting. It introduced MDI by giving a starting point to calculate basal insulin based on body weight and also initial instructions on carb counting.

Health Crisis

Things perked along for a few years and then 5 years ago I had a very serious health crisis - a blood clot in my lung following a surgical procedure. This caused ‘multiple organ shut down syndrome’. I was in respiratory, heart, and renal failure. My family was told that I was dying. They were getting ready for my brain activity to completely taper off so they could pull the plug. But one day I opened my eyes. The nurse paged the doctor and soon my bedside was flooded with hospital personnel looking mystified and wide-eyed. I did not know that I had been unconscious for 3 weeks in intensive care.

At that point I was too weak to roll over, lift my head, or even move my arm up to scratch under my nose. I was told that I would never get out of a wheelchair never breath without supplemental oxygen and never be able to live independently.

But - I questioned authority. It would have been so very easy to surrender to their predictions.

Questioning authority

When I was strong enough to use a computer I downloaded the manual for the oxygen machine. I learned how to turn off the alarm that sounded when saturation levels fell below a certain point (yeah. no one at the hospital noticed - go figure). I also learned how to dial down the amount I was getting just a small bit at a time. I was friends with a respiratory therapist and he agreed to let me give it a go without the machine. He could have gotten into big trouble, but, thankfully did not. None of the does believed him, but reluctantly agreed to monitor me more closely. Within a couple of weeks I was completely oft the oxygen.

So the next authority figure said there would be no way I’d ever again walk. Hump(… One night after supper I had the nursing assistant wheel me back to my room and said I wanted to sit for awhile before getting back into bed. And please close the door. I thought. If I can stand. I can eventually walk’. I put the brake on the wheelchair, pushed hard with my arms, stood up for 2 seconds and then collapsed back down. I secretly increased this every day and when I reached 10 seconds. I told the doc that I wanted physical therapy. He said. ‘no’ I don’t want you to get your hopes up’. A couple of weeks later a physician’s assistant came by and I told him that I really, really wanted to try pt. He reluctantly agreed. God bless him. And. the journey to regaining my strength and balance began.
It is most disturbing to think that I could currently be living in a care facility having no comparison to the quality of life I have now.

But… I continue to question authority.

The Broader Approach

Once I was given a printed summary after an appointment which said to take a daily aspirin. Well. I was already on the prescription blood thinner so waited until the doc came out of his next appointment and confronted him. He mumbled and stuttered and said of course I should not be taking both.

I have fragile kidneys and was on dialysis for 14 months. I have been off for 3 years. There are a ton of both prescription and Over the Counter meds that can further damage them and I am to take nothing new without the consent of my nephrologist. I need to go to Urgent Care for a skins problem and the doc prescribed an antibiotic. This place was a part of my clinic system and he had my entire record on the screen I specifically asked him if the drug was safe for my kidneys and he said “oh sure • no problem”. Well he was a doctor he should know. No? I phoned nephrology as I was living the clinic and two minutes later got a call back saying “no! Absolutely not!!! We will give you something else to take”.

I have a b’zillion other stories like these. And. I continue to think about patients who meekly submit to medical professionals.

Of course, there must be some initial level of trust or we’d all drive ourselves bookers. And. perhaps I question authority because I have a long history of dealing with the medical professions I could mention pursuing information on the Internet, but. ahem, that’s gotten me into trouble a couple of times.

Yes. it’s too bad that everything can’t be cut and dried. Always being on the watch is time consuming and exhausting and annoying. But I will continue to do it.

Trust yourself to question authority - it may save your life

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There is so much packed into that one passage alone that it’s impossible to respond to it all, but one thing is that it’s amazing to me how many times I’ve seen variants on this same story here on TUD:

PWD: "I’ve heard about this treatment that might make my life easier to live while managing my BG…"
MD: “Your numbers are fine–let’s not mess around with it!”

Ironically, it sounds like for you the issue was going to the first iteration of MDI, which was the R/NPH regime (2 shots a day), whereas for me that was the regime I was stuck on for far too long after I first heard about basal/bolus MDI, and kept getting pushed off with YNAF–LNMAWI. (I used to refer to R/NPH as the “Eat now or die!” regimen, and getting onto basal/bolus was like being given a pair of wings and told “Hey, you can fly now.”)

I do think it’s becoming a bit less common now–though I still see it here often enough–because the Internet in general and DOC (for diabetic online community) in particular make it futile for doctors to try to enforce this mindset:

Of course that also reflects an attitude that used to have a much higher saturation in the physician community in general, but again there’s still quite a bit of it around. Another symptom is the fact that specialists in one area do not necessarily know anything about others, particularly T1D; in fact we often know a lot more about our disease and how it is going to interact with treatments for other conditions than they do (as a recent thread on TUD made clear–beware orthopedists bearing cortisone shots!)

Anyway, thanks for your post Kathy–it really resonated with me in a lot of ways, generationally as well as PWD-wise. And thanks to @Rphil2 for posting it here as well!

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I think I post this shot every November for our Blue Month because it represents everything I love about TuD. Kathy is a wondrous human being and I love her dearly. This would be the first time we met face to face–in Minneapolis when I was back there visiting family. That’s Scott with us, like Rick and so many others here, a primo blogger and D Advocate. I got to know them both right here first…

Thanks for the great blog, Kathy, and thank you Rick for making it happen!..Blessings

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