A Little Bit of Knowledge is dangerous


#1

Was on vacation with my sister who is an RN and kept company with two of her friends who are also RN’s. God help me. I had a low one night which prompted one to state “obviously you are overdoing it”, then asked me “are you a brittle diabetic?”. We were not friends after my response: “I am familiar with that term, but it is no longer used”. None of the three RN’s asked about my insulin to carb ratio or correction factor. Pretty sure they knew nothing about those terms or that concept. My sister shouted at me “don’t take insulin” whenever she saw me inject. I had to explain things like "this is my long-acting insulin and I “need to take it”. I took to hiding whenever I needed to take insulin. She did not believe me about the onset time of Novolog. Afrezza was not comprehensible and she was aghast at the units I inhaled. A few days in I told my sister that I would not talk to her about diabetes and that she should not comment further.

I was diagnosed with T1D/LADA two years ago at the age of 56. My last A1c was 5.4 using a mixed bag of unconventional therapy that includes Afrezza, Novolog, Tresiba and sometimes Levemir and sometimes a pump with Novolog. Always with a CGM. My career has been in diabetes and heart disease research. I know my endo through my work, and she has complete confidence in what I am doing. In fact, I am the only patient in the entire endo practice at that facility who has been prescribed Afrezza. Instead of celebrating my success with treating T1D, my RN sister and her RN friends tried to usurp my endo and use my A1c as ammunition/evidence that I was “overtreating”.

This forum is invaluable for me. There is no one I know who has T1D. There is no one I can talk with about these things. It is such an isolating disease.


#2

Well you’re in no way isolated here! Too bad your sister and friend RNs are stuck in a one-size-fits-all approach to D. Maybe they should read a more recent reference text. There are some good ones published since they got their education.


#3

I suggested to my sister that she could find information on insulin on-set time and could read diabetes forums on-line but it only angered her. Her training was over 30 years ago. I have found that people with medical training are very sensitive to challenging their knowledge, perceived or otherwise.

After reading PWD experiences in hospitals, I understand my sister and her RN friends. They are stuck because of the litigious, ignorant environment of healthcare. But all three of these RN’s completed school over 30 years ago and all of them were out of bedside care.


#4

But the release from isolation is what is soooo important in this forum.


#5

Lauri, your experience with your sister and her nurse friends is frustrating. Every family is different and sometimes those close relationships can bridge that knowledge gap. You would think that people who provide healthcare could easily make the empathic jump to at least some insight to how much work diabetes takes. I’ve always said that taking the shot was the easy part – in your case even that wasn’t easy. Having to hide is pitiful, but I understand.

What do suppose drives that behavior? Is it fear or perhaps insecurity? Maybe they’re all burnt out on their profession and don’t want to think about it anymore. What do you think is the root of their lack of caring?

It seems reasonable that every nurse working in healthcare would understand the fundamental properties of insulin including onset, peak and duration.

I used to expect a lot regarding diabetes knowledge from health care professionals. I now realize that my expectations were overly optimistic and impractical.

But, I intend to cut none of them slack if I’m in the hospital and have my wits about me. I will not take a back seat to any of them when it comes to dosing my insulin. They’re amateurs!


#6

I’m sorry your own family is being so ignorant. I’m very lucky when it comes to my family and friends. My brothers are EMT’s and one of their girlfriends is in nursing school right now and she frequently asks me questions about treatments and diabetes devices. She decided to write her paper on emerging technologies on CGM’s. I’m also on Afrezza and my friends and family seem to love watching me use it.
The behavior of those nurses probably stems from constant exposure to diabetics who are ill or who have not been able to take care of their BG’s, but either way they were out of line.


#7

Oh boy, that’s awful. I have never had a good strategy for this, myself. The most that I can add is that I have seen this a lot from nurses and the occasional paramedic. They sometimes seem to be less preconditioned, as a group, to provide support. Although paramedics may pass some judgement, they tend to not really get involved unless your unconscious, so they probably outperform nurses in this social scenario.

Do you think you could ask your sister to join our forum? Its hurtful to have people close to you not understand you.


#8

Even worse are the MDs, since they feel they have a right to be more insistent in asserting their totally ignorant ideas. They are worse still when they are trying to command you when you’re in the hospital, since then their idiocy is inescapable. One doctor told me to eat my breakfast without taking any insulin, and then we would check the blood sugar again at noon to see if I should take insulin with lunch, given that the blood sugar had been low the day before. I had to give him a lecture on the basics of physiology to get him nodding and agree to back off.


#9

5.4 Wow that’s awesome! You mention unconventional but I would call you an early adopter blazing the trial.

I recently read a quote from Dr. David Kendall who use to be the Chief Scientist at the ADA and more recently worked at Lilly saying clinical results of afrezza supports it becoming the standard of care for both T1s and T2s.


#10

Yes, it is very hurtful and alienating to have my sister be so unwilling to understand diabetes treatment.

I DID suggest that she read some on-line forums, but she is so hyper sensitive to any suggestion that her knowledge base may not be adequate, that it only made her angry. I think it planted a seed though.


#11

Terry - It WAS pitiful to hide my treatment. There is not enough space here to list the myriad of emotions involved, but pitiful is an apt adjective. I think the motivation behind their behavior is insecurity. Their formal education was 30 or more years ago and only one was still in direct patient care although it is in mental health. They felt threatened.

Wouldn’t you think? I had an endo nurse exclaim with alarm that my Afrezza cartridges were “not your sliding scale”. Then I play out in my head if this is worth my time to address… and the answer is “no”. Why is an endo nurse talking about sliding scale? I don’t really know what that is… before my T1D dx. And she clearly did not know her insulins. But she’s an endo nurse… Oh help.

Prior to reading posts on this forum, it never occurred to me that hospitals would take over our treatment. That terrifies me. I need to spend time educating my two children. I don’t want my sister involved in any way. Neither of my children are medical professionals, but they have learned a lot about D and don’t have any preconceived ideas preventing them from learning.


#12

Thanks! I have an arsenal at my disposal. It seems that things go along well for a few weeks and then it all falls apart… for no reason… just because. That’s when I mix it up and usually, eventually, something else works.

So there are reported clinical results of Afrezza in T1’s! At my last appt I asked my endo if she would consider prescribing Afrezza to other patients, and she still hesitates. She thinks it would need to be a certain type of person. That makes me think clinical results are pretty sparse. It’s good to know that people are paying attention. I can’t wait to see some data.


#13

Ah, the joys of attempting to explain something in a way that answers questions but doesn’t confuse the listener. It’s difficult to explain even to the most open-minded listener because there’s just so much to explain!

I’m sorry that you’ve had such a negative experience with your sister. She clearly doesn’t understand the mechanics of type 1 diabetes. To be fair, I’ve met endocrinologists that don’t understand the day-to-day management of diabetes very well, so it’s hardly surprising that a nurse wouldn’t understand it either.

Generally when I’ve dealt with this situation, I haven’t really cared much what the people really thought at the end of the day. I’ve also chosen to simply not share this information when I have cared what people might think. It’s so much harder when it’s family with which you’ll always have long-lasting relationships.

I’m on a similar regimen! Humalog, Afrezza, and Tresiba. I recently started the last two, but I’m warming up to Afrezza rather quickly. Tresiba is simply wonderful. I’m hoping that people will realize the benefits of using an insulin as fast-acting as Afrezza. It’s been a huge asset in my life, and I’ve only just started using it!

I’m glad you’ve found a home here :smile:. I’m quite certain that we would all benefit from you sharing your experiences and techniques in managing the disease we all have in common!


#14

My friends with chronic illness seem to understand a lot of this stuff without needing much explaining. We call the ability to understand these things, part of our our ‘handicap advantage.’ We joke a lot about normal people and their lack of survival skills.

One of them suggested that I watch Edward Scissorhands the other month when I was feeling bad about myself and diabetes. It helped a bunch! You should watch it! Thank goodness you have your kids as a support structure. Watch out for the “anti-support group” family members that are out there. I suppose we all have them. They are quite taxing.

Here’s some stories from people with chronic illness to help you feel less alone.


#15

It’s the arrogance and the judgement that gets me. I don’t know how much diabetes-related training RNs get but I know it’s slightly less than 24h/day x 365 days/year x 1 life. I wonder if people with other chronic illnesses encounter these same types of scholars.


#16

Perhaps a little support for the medical profession here. First, we know there are good and bad doctors — just like every other profession. But consider the environment these professionals work in. I have been the first patient to use a blood sugar meter AND the first to use Afrezza and now the Freestyle Libre for specific medical professionals over my lifetime.

Consider the next 50 or so patients these professionals will see. Many will have horrible complications. Just helping these people not to lose a limb or go blind or experience kidney failure is a big first step. Just getting them to take their medicine is not a trivial task.

So we march into their office with all kinds of data and tell them we are aiming for A1c’s well under 7.0 and that we are running our blood sugars close to the red line. Not all medical professionals are going to know what to do and perhaps don’t handle it well.

To me, a good professional is one who LISTENS to the patient. If they can really hear what I’m saying and ask insightful questions, that’s enough. Unfortunately, some can’t even manage that! So, even though I get frustrated at medical professionals at times, I can also empathize with the job they have to do.


#17

Some have been using afrezza for about 10 years and its been 3 years since product release. It will probably take another 3 to 5 years for the medical community to grasp what you are now experiencing.

Additionally the inventor of afrezza, Al Mann did over 60 studies. In addition to his previous knowledge of afrezza I suspect Dr. Kendall had chance to review these result before making such a bold statement.

Stay the course, maybe try splitting the basal dosing to further reduce the hypos as its the basal and/or RAA which is the cause of the hypo.


#18

Thank you for sharing that! Perhaps a greater understanding would be beneficial on both sides of this issue. More listening never hurt anyone. :blush:


#19

It sounds like your sister & friends are a little bit arrogant. I don’t know if they are acting this way because they really have bad personalities and self control, or if they are acting this way because they don’t want to accept that they can’t make everything better for you (cure you). Neither one is an excuse for what you say they did, but one thing that I have always believed is that when it comes to health, even if they work in the field, discussions and advice should usually be kept between you and your doctor, because personal & family relationships can have too much influence.


#20

When I was first diagnosed in 1966, everyone used to say, “Why are you still injecting yourself every day? Why not take oral insulin instead?” ‘Oral insulin’ was the misnomer then current describing the various anti-diabetic medicines which only type 2 diabetics take. I finally got tired of trying to explain things to people, since they were fixated on this verbal confusion.