What Do You Wish They Knew?

I got some good news last week. I’ve been invited to speak to health professionals in Louisiana and to people with diabetes in Alaska. And they’re paying me! Now I have to figure out what to tell them, so I’m asking for your advice.


Many professionals only know what they are taught in school. They really don’t know what it’s like for a person with diabetes or other illness to manage and cope. I’m really excited about the opportunity to educate them and hope to do more of it. I want to make a good impression.

In your opinion, what are the most important things for nurses, diabetes educators, and doctors to know? What are professionals doing that works for you? What doesn’t work? Do they help you self-manage, or do they stress you out and make you feel like a failure? I’d like to give them a couple of tips from our community.

I’ll be talking with people with diabetes in Alaska. If you had one piece of advice to give folks who share your condition, what would it be? What’s your second choice?

I’m also doing a workshop for couples on managing diabetes as a team. I’ve written about that here, but I’ll only have an hour. What are the key points? Do you have any tips for couples?

In this blog, I’ve written about hot topics I’d like to discuss with the professionals and the people with diabetes. These include dietary issues, such as the carb controversy, Mediterranean diet, and intuitive eating. Also, general health concerns such as early use of insulin, how tight control should be, and how important weight is. I’d additionally like to talk about my favorite topics of stress, inflammation, and of course, sex. Finally, I’d like to stress the importance of sleep apnea, and talk about “polypharmacy,” or putting people on too many drugs.

How does that sound? Is it too much? What am I missing? Should I perhaps have more about complications?

Taking Care While Traveling
I’m really excited about these opportunities, but I don’t want to make myself sick. These are two long trips and two long days of presenting on back-to-back weekends. How well will my body hold up, and how will I manage Fairbanks in February with my disabled self?

I’ll have my wheelchair, but it will still be hard. Aisha is coming with me to Louisiana, but I’ll be on my own in Alaska. What can I do to protect myself?

The programs are February 19 in Lafayette, Louisiana, and February 27 in Fairbanks, Alaska. If you live near those sites, come see me!

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  • Michael Barker

    Ask them if they’ve ever heard of Ketosis Prone Diabetics because they’ve certainly seen them even if they didn’t recognize the condition.
    I am a Ketosis Prone Type 2 or I can be described as a Idiomatic T1b. My pancreas can and will completely shutdown and I will go DKA without insulin. Once insulin is subscribed the pancreas will not only produce insulin but will produce enough to take me into remission. 6 months ago my A1c was 10 with bgs going into the 400’s. Now my A1c is 5.2 with diet and exercise. Sounds rare? Guess again. Most admissions for DKA in the US are not type 1 but type 2. Want to guess who that is? Yep, me again. This is rife within the African, Native and Mexican American communities. It is probably a bigger deal than either LADA or MODY in all these communites.

    Diabetic ketoacidosis in type 2 diabetes mellitus pathophysiology and clinical presentation
    Stephen N Davis & Guillermo E Umpierrez
    Nature Reviews Endocrinology 3, 730–731 (1 November 2007)

    This is a big unrecognized problem and unfortunately getting bigger, telling people about it might help them or people they need to help.


  • Sally Smart

    People with Neuropathy are expected to describe their pain and it is hard to describe so professionals act like you are looking for sympathy instead. It is a silent diasease that has this and that today and those and them tomorrow. It does not act like a pain in the back that is there every day. After a long time of having it there are deformities in the feet and then they start to believe you after the right professional takes the time to measure your abilities and strengths.
    Diabetes is still being looked at as a fat persons disease by professionals and with all the studies being finally performed there is evidents that it is a genitic disease too. Looks like they have found that injecting leptin may help diabetes and obesity. I am not in bad shape at this time but was due to working mid shift and possibly working with chemicals and eating/sleeping at the wrong times of day, someone’s gotta do it.
    Face it, our lives have become a “rush to Friday” kinda thing and the bad food system we have now still isnt helping. We need more studies and better labling rules on foods as well as better processing or more time to do it ourselves. People need to understand this disease even if they are not diabetic now because it looks like we are all headed in the same direction even if it just means our kids will suffer it.

  • Sally Smart

    One more thing that should be said is the symptoms we should be looking for. The usual posted on posters and brochures is thirst, frequent urination and vision problems.
    There are many more not being mentioned that are either normal to find and not being mentioned or maybe the way the disease is turning itself, who knows.
    I had a huge pain in my shoulder, then sore feet then my first Ever boil showed up. The shoulder pain went away after finding out I had diabetes so that could have been frozen shoulder.
    After reading long and hard I am finding that yeast infections, cramping in hands and feet boils and many more symptoms are are well known but not so much mentioned for some reason but the three I mentioned above are.
    I also had head spins a few times (probably after a high carb meal not knowing about it)
    Why are these other symptoms not being mentioned? dont know but the usual three mentioned are more likely to be found after you have been diabetic a long while and finding out then might be too late for a chance of reversal or delaying those complications but that was what I was told to look for so I did not suspect and I thought I injured my shoulder. I also thought the sore feet thing was about working mid shifts and “I will get over it” so I let it go till I nearlycould not even walk anymore (tough chic I guess) Funny how my doctor heard me say my feet were sore three years after it started and he said “you are a diabetic” then tested and sure enough. Now why did he not ask me about this kind of stuff when I was in appointments for other reason and was too shy to say “oh wow is me, my feets hurt”

  • CalgaryDiabetic

    Dear David

    I am not sure how to handle this because it is politically touchy. But the main issue in diabetes is diet. The more so in Alaska with the native people. The main problem, if you want to achieve good control in diabetes is to eat a low carb diet, however our favorite association preaches the opposite.

  • dancing with diabetes

    Dear David,

    For aboriginal people in Alaska, tell them about the AlertBay band in BC, which has adopted a program of going back to their traditional foods (or sustainable equivalents). The research was done by Dr.Jay Wortman.

    I think that the most important thing that someone with diabetes should know is that they need to reach out to others with diabetes. Isolation is a very common problem that creates an attitude of denial and/or depression, and usually really poor self-care. Seeing the doctor every few months or year is not enough to support a person living with diabetes.

    For the medical professionals, I think that they need to get realistic about the inability of the medical system to handle the diabetes epidemic. There is not enough money or time or trained personnel to cope with it all. Unless they ‘share the territory’ of diabetes, it will overwhelm them. Largely unacknowledged are blogs and forums, websites, community initiatives, and many qualified and interested professionals who can help with the many aspects of living with diabetes. It isn’t just about the pills and injections and the quarterly appointments with the doctor. Unfortunately, most of the other resources are provided on a volunteer basis, which means that most of them are short-lived.

  • David Spero RN

    Thanks Michael and Sally,

    I hadn’t heard of “ketosis prone diabetes” before — it seems another mixed type (like LADA and MODY) and would be tricky to treat, especially if you haven’t heard of it! I will study this and write about it next week and include it in my talks.

    Sally, I knew neuropathy was a big problem, but your story shows poorly it is understood. Have others had this problem?

    CD, the diet controversy is part of my talk already. I’ve learned quite a bit about it from you over the years.

    I would appreciate any other comments like these on “what professionals need to know.”

  • June

    My 2 cents, and maybe its jaded from my own experiences:
    Although endocrinologists and CDEs are somewhat more aware, its been my experience that many (most?)GPs/Internal Med/Family practice physicians do not understand that adults past the age of 30 can and do develop type 1 diabetes. They need education on that.

    They should know that Endocrinologist associations and other diabetes specialist groups have much more strict goals for glucose numbers — particularly after meals.

    And they need to learn how to talk WITH rather than “at” people with diabetes so they are willing to open up about their disease (actually this is a must no matter who they are treating for what disease)

  • Mark Ritchie

    Dear David,

    Did you notice the time that Sally Smart wrote her 2 messages?

    Insomnia is the bane of my life – I believe it is down to the statin that I take which, at 80mg is a veritable horse-pill to take and the highest daily dosage that can be prescribed (in UK anyway!)

    (BTW. I’m a 70 year-old, T2 diabetic which is controlled by diet but I cannot do any sustained exercising because of an osteo-arthritic (left) knee and (right) hip.

    Good luck on your travels,

    Mark Ritchie

  • Pepper

    One thing I would like for professionals to know is that keeping blood sugars in a “normal” range is not as easy as it may seem. My endocrinologist understands how hard a balancing act it is (insulin, exercise, diet, hormones, etc), but when I see doctors in other fields, they seem to think is should be so simple. They have made me feel like I am a real slacker, that I have no will power or like I just don’t try. I have dealt with diabetes every day for over 20 years and I have never ignored it. I have spent many days puzzling over why my blood sugar is up, why it is down and after 20 years following this or that meal plan, eliminating this and that, changing insulin regimes, etc., it is still a day to day challenge.

    Also, like Sally, this summer/fall I have learned that diabetics are more prone to getting carpal tunnel syndrome, shoulder impingement syndrome, and trigger fingers. I do not believe I have ever been known this. I would like to have been told this 15 to 18 years ago.

  • Beth

    My thoughts as a nurse CDE who also has diabetes —

    1. Diabetes does not explain everything in my life. I have foot problems, and I also have diabetes, so most professionals meeting me for the first time assume the foot problems are from the diabetes. But really they cannot be. My foot problems started 7 years before I developed diabetes. (And I was not undiagnosed for years, I know exactly when it started because ZI was already monitoring.)

    2. You really can do everything you should and still have BG control problems.

    3. Even though I am overweight, I probably eat in a more healthy way than most people. And I am probably more disciplined in my approach to life than most people. I am not lazy, and I do not have a death wish. It simply is really, really hard for me, and lots of other people, to lose weight.

  • Gail

    I’d like them to know what it’s like to have a hypo. Hypo’s are not something that we Type 1’s deliberately set ourselves up for. For some people like me (brittle diabetes) they can just happen for no apparent reason and if, like myself, you have lost all warning signs over the past 52 years of having diabetes, they are very tricky to prevent from happening. All we can do is to vigilant about BG testing.

  • Sally Smart

    Hi Mark Ritchie, I didnt even realize it was that late, not really insomnia as you thought tho, or not by unexplained causes I think, I worked mid shift for 11 straight years and tho I have been fired because of my medical issues (even tho we had a medical plan) I have found it hard to adjust back to sleeping a full night yet, I could sleep all day tho but try not to. Again here I am writing at night when the rest of the world is asleep, but that is part of the working worlds problem now, we gotta do it, someone has to.
    I do believe that night shift is part of what may have helped trigger my diabetes. Wrong sleep times and wrong meal times, Do I eat eggs for breakfast and then sleep 8 hours on it, or do I eat them at 3 am for lunch at work??? I loved my job but it nearly killed me and then when I needed help to heal through works accomodation program I got tossed out like their garbage.
    Bad food is not the only thing contributing to our disease,,, stress is also there to help it. As soon as I began realizing I was loosing my job I copped my first 18 blood sugar and never have brought it down from there since. I was followed to the bathroom at work and threatened and EVEN screamed at by supervisors, and then they pushed me off on medical leave and then ended it abruptly and refused to talk to me or let me back on gradual return at my doctors request when things seemed to be a little better.
    There are so many studies telling us there are genetic causes as well. We should be offered a simple test with a glucose monitor right in the docs office as part of the exam the doctor does when he taps our knee for a reflex. This might have told me earlier. Instead I kept an eye on the symptoms told on the brochures he keeps on the wall in his waiting room.
    Diabetes runs in our family but later in life then my diagnosis. I was diagnosed the year before my own mom, she is 21 years older then I am and she is managing hers better then I am. She was told she was a prediabetic and can keep her BS around 5 or 6 with similar diet as mine.
    Last thing we need now is to let this lack of knowledge keep happening, let our work places kick us in the gut after we are already down, wait any longer for the answer to fix it, I am hoping for some more information on this leptin injection theory and even cell transplant. It has to be a war on this disease,,, yesrteday!