You Know You're Type 1 When...

Hops
By Hops Latest Reply 2014-10-12 07:12:25 -0500
Started 2014-10-06 07:31:03 -0500

It is startling the lack of comprehensive, conscientious training about diabetes management that the diabetic receives. Last week I met a fellow who's A1C was in the mid 8 range just diagnosed and his doctor did only three things before sending him on his way. His doctor prescribed Metformin, told him to diet and lose weight. That was it. When I asked my new friend about blood sugar testing he said his doctor did not say a word to him. FYI this man has foot neuropathy and requires special care. Since the military has basic training just to get you started should diabetics all be subject to basic training for diabetes management? We really need a 12 step program.


10 replies

Gabby
GabbyPA 2014-10-06 08:55:52 -0500 Report

I don't know that I would say we need to be subject to a basic training as much as our doctors should care enough to teach us how to manage and not just push us out the door with a script and a diagnosis that has us scared out of our minds. I do like the idea though of a basic training. I took mine in the form of a nine week long class. It was awesome. And even at that, I learn so much here every day.

Here is what my 12 step program would look like. It's kind of more for both the doctor and us, as working together is the key

  1. Accurate diagnoses of type 1 or type 2 (or any other variations) by doing the required tests to back up their diagnosis (no guessing allowed)
  2. Doctor who is not a specialist should be open to sending you to one
  3. Diagnosis visit must include a follow up with a diabetic educator and/or nutritionist.
  4. Doctor will explain the importance of testing and offer a one month schedule of testing to get you started. Type 1 and 2 would have different packets.
  5. Doctor will explain and give you UP TO DATE information on counting carbohydrates and understanding how they differ. (no more avoid white food cliches)
  6. Doctor will give you a journal to keep track of your first 3 months and will eagerly go over it with you on your next visit
  7. Doctor will help you understand that you need to exercise not just to loose weight if needed, but to help your body use the glucose it has.
  8. A list of required reading should be given and discussed on the next visit.
  9. Doctor will explain what the medicines they prescribe will do for you and not just tell you to take them "because I told you so"
  10. Doctor will work up a suggested care team for you to include eyes, feet, kidney and heart. (at the very minimum)
  11. Doctor will rejoice in your success and help you to understand the fails, not judge you as non-compliant.
  12. Doctor will become your best supporter in all the efforts you do to manage your diabetes and listen to all your experiments, just in case they might learn something from YOU.
ari's mom
ari's mom 2014-10-08 00:02:48 -0500 Report

I love your list. Last year, my now 7 year old daughter, was diagnosed with Type 1. Her pediatrician basically told me that she was a diabetic, he was sending her to a specialist the next day, and to just let her eat as usual and to just test her glucose levels and do nothing until we saw the specialist the next day; he didn't start her on ANY insulin, just sent us home with a meter, that's it. Well needless to say when we ate dinner that evening her glucose was so high that it didn't register on her new meter. I take her to the local ER and they found out she was in DKA, she could have died had I not taken her to the hospital. Luckily for us I went against her pediatrician and took her to the ER, they then sent her to a Children's Hospital in a bigger city (we live in a rural area), in which we spent the next 3 days with her on IV fluids and learning how to give her injections. When we finally left the hospital and went to the Endocrinologist that her pediatrician had referred her to 4 days earlier she read us the doctor's note about why we didn't make it to the first appointment, in which he explains that "mom freaked out and took patient to ER who then transported her to the Children's hospital." I was livid! Then after that she ended up with a wart on her foot, I don't know if that's something many diabetics get, but any doctor, not just a podiatrist, should be able to diagnose a wart, well her pediatrician tells me that it's nothing and to lotion it. Now to give you an idea on how bad this wart was it had grown so large that she couldn't walk, it was in the bends of one of her toes and the poor little thing couldn't even mover her toe it had became so sore. I knew it was more than "nothing" and lotion wasn't doing a thing for it except making it worse, so once again I had to get a second opinion, now she's completely wart free. So I think to add to your 12 step program is to fire any doctor who doesn't listen to you, if he's going to ignore the little things just imagine what he'll do when something serious happens. We now have a new pediatrician and have since left the endo he recommended because she seemed to be less knowledgeable and willing to help my daughter than I felt comfortable with. My thought is if you don't agree with them and the don't listen go with your gut before it's too late, as diabetics, the smallest problems can turn into the biggest if left unattended or misdiagnosed.

Gabby
GabbyPA 2014-10-08 06:04:53 -0500 Report

Yes! So often we think that we cannot fire our doctors or that they are golden. You had one like I have now. I hate it. Mine got all bent out of shape when I finally sought a second opinion on my neuropathy I had been asking him to check on for over a year. You pay them, you can fire them for sure.

Your daughter is lucky to have a mom who keeps her wits and pays attention to the problem and the "solutions" and is able to think for yourself. That is one of the most important things we can do for our families.

ari's mom
ari's mom 2014-10-12 05:25:41 -0500 Report

Thank you so much Gabby, I try to do my absolute best for her, and if that includes seeking second or third opinions until I have an answer then that's what I'll do, I have been so lucky thus far with her, from day one every time I've had a gut feeling about her doctors being wrong I've been right. Since I posted my last post we've finally seen a new Endo who really agrees with me about a lot of the issues I've had, especially in testing my daughter to see if she's got any other autoimmune disorders including thyroid disorder and Cilliac's disease because she's extremely small, and this has been another area I've been tremendously concerned with that all her other doctors have just ignored. This new doctor says she doesn't understand why they didn't test her for all these other conditions when she was diagnosed, so I am really pleased with the care she'll be getting now.

Gabby
GabbyPA 2014-10-12 05:41:05 -0500 Report

Sounds like you have a keeper there in your new Endo. That is great and will help you find the answers. Take care of that little one. She is going to be teaching you a LOT.

ari's mom
ari's mom 2014-10-12 07:12:25 -0500 Report

She already has, I had no idea that you could have moderate to severe ketones with low blood sugars when you're sick, our last endo's nurse told me on the phone to not give her any more insulin than usual and this new one told us that was something some people don't figure out for years into the disease and she did in fact need extra insulin. The things I learn on a daily basis amaze me and I'm sure throughout the years there will only be more discoveries in my future.

Hops
Hops 2014-10-06 10:28:46 -0500 Report

I especially agree with the support for their patients and lack of focus on compliance. We had a group of more than 40 diabetes physicians who claimed that lack of diabetic compliance was the cause of most problems. We asked these doctors to spend one weekend living according to the diabetic regimen. All them said they would. The next week only two doctors had complied.