Frustrated and somewhat fed up…

This isn’t about me.

It’s about the T2’s who don’t get what they need to learn to live well with Type 2 Diabetes. In my work, I’ve met many people who are trying their best to control their T2, but they seem somewhat clueless, and I don’t believe it’s their fault.

Working with the needy, I keep seeing people who are struggling to pay their bills and eat. Some of them have T2.

Recently, one told me how he needed extra food money since he had to buy special food for his diabetes. We had a long conversation about food choices…

Today, a welfare employee wrote that we should help someone who needs more food money as she’s on a special diabetic diet. I promptly replied that there’s no such thing. She replied, yes there is, my brother has diabetes and he has to buy special food. I replied, well, so do I have diabetes. We talked later and it turns out her brother has T2. According to her, he has to have orange juice in the house at all times because his BG goes low so frequently (he’s on insulin, obviously). According to her, her brother takes tons of insulin, but hasn’t stopped eating white bread, cereal, etc…

I am NOT a d-expert by any means but I’ve certainly been able to learn so very much by blog reading, book reading, the DOC (T 1’s & 2’s) and meetings with my CDEs. I don’t think the people I see are getting much help or direction.

The woman I worked with today sort of knows what to eat and what to avoid. She tests twice a day and writes it all down. While talking, she told me how she’s just so tired every day. She is supposed to go to some d-education classes but – – – hasn’t gone. I stressed to her that she’d learn how to be in charge of her own body, if she’d just attend the classes. She said, she had a nurse who told her that if she felt jittery or shaky, she should drink orange juice. Nobody told her to test – but then – I don’t think she can afford to test more.

I’m not a medical professional. I shouldn’t be giving advice. But – jeez, it’s hard not to.

Last year, an older woman (a parishioner) came in and said, “They said you could help me.” I said ok, what do you need? She’d just been dx’d with T2, was given a meter and DIDN’T know how to use it. So we practiced. She’s doing great this year and knows what she’s doing.

I went to the classes shortly after I was diagnosed 6 years ago. At the classes were a hodge podge of us, all trying to figure out what was going on. One younger woman in the class, just wasn’t getting it and usually slept through the entire session. I thought it was terrible, not that she slept, but that it was fairly apparent that she wasn’t going to learn much. And even more obvious, she needed more help than the class was giving her. At the end of the final class, I went to the director and let them know I was concerned about the young woman. They assured me that they were aware of her difficulties and would be working with her further. I have no way of knowing if they did, or didn’t.

We d-people are scary to many.  And some of our town’s “needy” d-people have learned to play the system. And that frustrates me. They’re alone, they need the education in a way that they can learn. (I’m also a former SpEd teacher…)

I know, I’m preaching to the choir here but… people like Wil, who work so hard with those who need the most help, impress the hell out of me (and I probably have a lot of hell in me…). Rachel tried to get some group stuff organized, also.

I also know this is a very disorganized, rambling post. But I just don’t think it’s fair that some of us “get it” (d-education) and some don’t. This lack of learning really, really bothers me. (Can you tell?)

And just for fun, a bear wandered through our yard this morning. Love living in the woods!

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8 Responses to Frustrated and somewhat fed up…

  1. James says:

    Having orange juice in the house to combat lows isn’t a bad idea. I have found that sugars in liquid get into my blood faster anything other than a direct injection. Was your point that drinking a lot of orange juice was aggravating that person’s t2 diabetes? Were you trying to get the point across that many of the people you come into contact with are less than entirely knowledgeable that insulin is the counterbalance in our lives to the food, and more significantly, the carbohydrates we consume? I would suggest that you point your grievances at the pharmaceutical industry, research teams, and society in general who are all very happy to allow the need for administered insulin to continue. The tools to cure this are at hand now. Failure to accomplish this is simply a weakness of will and greed.

  2. Joanne says:

    That would frustrate me too. I remember the class I went to about a week after Elise’s dx. The CDE asked the class if your child’s BG is low, what do you do? One parent (who had been doing this for awhile, they just had never taken the class) replied, “give insulin?”

    Another said that you should give your child their BG is high (which IS true, but they missed the point that you give INSULIN when the BG is high).

    Even as a rookie, I knew these people were so off base it was scary. One of the kids in attendance was a teenager and she sat and texted through the whole class.

  3. Scully says:

    I have had many conversations with other people about the complete lack of education when handed a D diagnosis be it T1 or T2. I, myself wandered around for the first few years of my D life completely unaware. I tested but I also swagged my way through those years. Nobody taught me about insulin to carb ratios or carb counting or insulin sensitivity or correction factors. Nobody taught me how to manage exercise. Furthermore, at these doctors appointments (I didn’t even have an Endo) they had no suggestions, nobody seemed to push me in the right direction. I didn’t even know I needed a direction so it certainly wasn’t going to be my decision. I thought this is just how it’s supposed to be. This is how all T1’s live I guess. Well, one doctor along the way helped with educating me and I’ve never looked back. But now I worry that other people are going years maybe their whole D life uneducated simply because they don’t know any better.
    I’m with you. I agree.

  4. Bob Fenton says:

    You have got it! Nailed it! Most (and I mean all but a few) never get the needed education. Many even get the wrong information. Myths are promoted by many in the medical profession and most are told they don’t need an endocrinologist. Most PCPs use fear to get their patients attention and then leave them hanging without the needed support.

    I also blame the medical insurance industry because they will not allow enough test strips to give patients the ability to test and determine what a food or combination of foods does to their blood glucose levels. Then add to this the doctors that won’t even prescribe meters as they don’t want their patients to learn how bad the blood glucose readings can be.

    Then I say to the certified diabetes educators that tell people to eat the wrong foods and not worry about testing when they should, they should lose their certification They follow many of the outdated ADA guidelines and not the newer updated ones allowing for individual variances for total carbs. Even some dietitians follow the outdated guidelines.

    Lucky for me that my doctor got me the right education and then referred me to an endocrinologist where I have been further educated. I have lost several friends that had type 2 and did not manage their blood glucose. Two developed chronic kidney disease and refused to continue on dialysis, so they are not with us. Another friend is now at that crossroads and does not want to continue his dialysis. Will several others listen and learn from this happening – no, they say they are doing what their doctor told them to do and that is all they intend to do. I have attempted to educate them and all they can think about is asking for my medical qualifications. Grrr, and double grrrr. Oh, I don’t worry about them as I have my own diabetes to worry about and manage and their diabetes is theirs to manage.

  5. Kelly Booth says:

    I have had this same frustration. I do think it is a lack of education. I had an aunt that was T2 for as long as I can remember. She never had a meter to test her BS until she was put on Lantus and then she was only told to test her BS first thing in the morning. I stopped to see her one day and she was bragging about what her BS was that morning & asked me what mine was – she did have a really good number but I asked her what it was before lunch, dinner or before bed. She was not told to check any other time and actually thought that because her BS was good when she got up, that is what it was all day. The next time I stopped, she told me that she started checking other times of the day and was surprised how high it was other times of the day.

    One night she fell and was sick so called her son. He had her check her BS when he got there and it was high. He did not know what to do so he called his sister. She told him to give their mother juice. None of them knew that juice would actually raise BS not lower it.

    Then there is my T2 neighbor that had lap band surgery to reverse her diabetes. I saw her a couple months after her surgery and asked how her BS was doing. She did not know because she had not tested since her surgery.

  6. I think some people still think D is “no big deal” so why bother to learn anything? That, in itself, it a lack of education. Or those who think that no matter what you do, it will not make any difference.

  7. I got stopped out and wasn’t done. One of my best friend’s husband has T2 and refuses to test his blood. I suggested may just twice a day to start and he stomped out of the room. He also has severe sleep apnea (which can be deadly) and refused to wear the mask at night. The marriage is in trouble because of his failure to be responsible.

  8. Ok it happened again. Suddenly the screen locks up and I can’t type anything more.
    That looks like a good sized bear. I showed the pic to Esther. Just last week we had watched “World’s Deadliest Animal Attacks” (don’t tell her mom) on DIscovery Channel and she said she hoped it wasn’t a killer grizz and that you were safe.

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