Another Diabetes thread: my week at Joslin

Miscellaneous and Personal Stuff I Must Share
1

We haven’t had a good diabetes thread in a couple weeks, so I figured I’d better start one. I spent most of last week at a 4-day program at Joslin Diabetes Center in Boston, and thought all the other diabetics would be interested in what happened.

First off, this program is incredible. Mr. Athena and I both were starting to have our doubts before we left - were we going overboard? Did we really need a 4 day session to figure this all out? Would it be dull/not worth the money/just tell us what we already knew? It was none of those things. I can honestly say that every single one of the group sessions were interesting and we learned something, and the individual meeting with the doc were invaluable. They encourage all participants to bring a “support person”, so Mr. Athena was with me every step of the way, and he learned a lot as well.

The way it’s set up is that the first day, you meet with the doc and all the other Joslin “team members” - a dietitian, an exercise physiologist, and a registered nurse. All of them are diabetes specialists as well, since the only thing they do at Joslin is Diabetes.

The remaining 3 days are spent in group sessions, going over Diabetes basics, Food & Diet, and Exercise. They feed you breakfast and lunch from a buffet, and part of the educational process is that they hover over you as you choose your food, and help you pick good choices based on the customized diet the nutritionist put together for you after your Monday meeting with her.

You also exercise every day after the first day. This was probably the least informative part for me, since I know how to exercise already, but it was still fun because it was nice to get a workout in, and they do help you track your glucose levels during exercise which was kind of interesting. I also got to be a stud, because everyone else was old, out of shape, or both. I’m not used to being the biggest jock in the gym, but I was, so that was nice!

Every day you also meet one-on-one with the doc, who goes over any lab results she’s received, your log book (you write down all your meds/food/exercise all week and they review it 2 or 3 times a day), and any changes she wants you to make to your plan.

Sooo… the big things for me were:

  1. I’m Type 1, not Type 2. We had suspected something like this - I just did not fit into Type 2 from all I could find out about it. It’s actually a difficult diagnosis, and to be fair, the doc says “probably Type 1.” I have more lab work that will come back this week that may strengthen that diagnosis. If not, only time will tell. How I respond to meds and what changes over the next year or so will solidify the diagnosis process.

Things that made her think I was Type 1 include my blood glucose patterns, how I’ve responded to the drugs I’d been taking, family history, and general lifestyle, including weight, exercise, how I eat.

My local docs told me the fact that my cousin, who is Type 1, was not a close enough relationship to be a family history of diabetes. Docs at Joslin said the opposite - cousin is definitely close enough of a relationship to assume I have a family history of Type 1.

  1. they took me off the oral drugs I’d been taking, and put me on an MDI (multiple daily injection) routine. So now I get to shoot up before every meal, based on how many carbohydrates I eat. The good part is that I can eat much more normally than I have been - Joslin’s dietary guidelines for diabetics are the same for non-diabetics, meaning: just eat healthy (for me, that means ~2K calories a day, roughly 35% carb/30% protein/35% fat). I’m probably the only person in the world who is actually happy to have to shoot up so many times a day, but given how restrictive my diet has been for the past 3 months, if I have to stand on my head and sing the national anthem before every meal in order to eat a piece of bread, I’ll do it.

They also told me I’m a good candidate for an Insulin pump. I will probably go this way sometime in the next 6 or 12 months, but for now, I’m doing the MDI since you have to learn that anyway before you go on a pump (in case the pump fails, you gotta be able to do it on your own).

  1. my number are fantastic. My A1c, which is the one biggest number that tracks how my blood glucose control is, is at 6.0. That’s in the normal range for NON-diabetics, so I’m ecstatic. It was 11.5 in November. My cholesterol and triglycerides are all in the normal range - I’ve had moderately high cholesterol my whole life, so I’m actually doing better despite the diabetes.

The upshot of all of this is that now, I’m having to get used to the pre-meal shots, and figure out dosage. It’s kind of a bummer, in that I’ve been used to really nice glucose numbers from watching what I eat, and now I’m just all over the place. It’s a lot of trial and error, and they give you guidelines about how to figure out dosage based on your food, but it’s going to take some experimenting to get right. I’m sure we’ll get it all figured out eventually.

If anyone out there is looking for guidance about their diabetes, I can’t recommend this program enough. It’s aimed at any diabetic - my class consisted of Type 1s, Type 2s, people who’ve had diabetes for 30 years and people who are newly diagnosed. It’s pricey - ~$3700 for the 4 days, but $3200 of that should be covered by most insurances (the remainder is food/books/etc).

2

Good for you.

My mom is Type II Diabetes. I wish she’s do something like this for herself. I’ve asked her to take it more seriously than she does. Instead she sends me emails about her latest high blood sugar and how much her hands hurt from the neuropathy.

3

Wow - this is really interesting. There’s no reason you should know the answer to this, but do you happen to know if Medicare covers it? It sounds like something my father-in-law could really benefit from (newly diagnosed with Type II). He’s on Medicare due to disability (from a back injury, not the diabetes).

4

I think if you were interested, you could call Joslin and ask them about Medicare. The insurance coordinator I talked to seemed pretty knowledgeable about most common insurance carriers.

5

There was at least a couple other participants that were having trouble with neuropathy, and I know the doc/CDEs addressed it.

Of course, if your mother won’t help herself, that means nothing. If there’s one truth about diabetes, it’s that it’s YOUR disease. Doesn’t matter how good your docs are if you don’t deal with it every single day of your life.

6

Odd, possibly irrelevant story about diabetes and medical exams.

My husband became diabetic after a bout of pancreatitis. He’s been very good about taking his medication and checking his blood sugar and so far his AC1 tests have been in the 6.5 to 7 range after the initial few months of “Crap! I have to get a handle on this!” Among other things, he went for a general checkup and reminded the doc about having to keep an eye on his diabetes. Well, the doc is going over stuff with him and gets to the foot exam. He asks him about sensation or lack of it in his feet, checking for nerve damage. My husband looks at the doc and says “I was born with spina bifida - I have never had any feeling my feet.” The doc goes, “Oh, right” and then moves on to checking for sores/infection/wounds on his feet, of which there were none.

Doc did mention that the insurance company, with its nosy “Have you done this, this, and this?” evaluation forms and documentation requirements was not really set up in mind for people who had suffered nerve damage related to the extremities before becoming diabetic. Which I guess is a round about way of saying don’t forget about any other issues you have while dealing with the diabetes, and don’t let your medical people forget, either.