News from Our Informal Peer-to-peer Group

One of the members asked me why I have not blogged about our group lately. I asked what happened this summer and fall. He said many of the group traveled during the summer and some had just recently returned the first part of October. Some of us had gotten together occasionally, but not regularly, as there were not a lot of new things to occupy us as a group. Even now, we have not had the entire group present.

Some of us are excited about the new study from Sweden that identifies a new marker for determining diabetes approximately ten years before diagnosis. True this needs further study, but may be a lead in the right direction. It means nothing to those of us that already have type 2 diabetes, but if this can assist in making potential diabetes patients make lifestyle changes now and delay or even prevent diabetes - this is a good thing. We will be watching for further research on this topic.

In addition to my having to take a forced writing vacation per my doctors to let my wrist heal, two of the group has had some illness and another has a family member with an illness that put the spouse in the hospital. This has caused us to be more careful and less likely to take time to get together. Some of have been exchanging emails of late attempting to figure out a convenient time after the holidays for all to get together and possibly introduce three new members. I have the two women that I met recently and Barry and Ben have a new friend as well. There may be others that we haven't heard from yet.

Several of the members are quizzing me heavily about my peer mentoring experiences. Three of the group is asking if they could sit in on a session, see how I answer questions, and possibly consider doing something similar. We have talked extensively about how I answer questions. I first told them that I do not make suggestions in many areas unless it preface it with “you must talk to your doctor.” I make sure the question is answered with talking with your doctor and suggest two or three possibilities to help guide the questions. I warned them about making recommendations that might sound like advising people to take a certain medication. I said that we cannot do this and this type of advice can create legal liabilities we don't need. I explained about one participant that was trying to get me to do just that. I also said I would need to talk to the doctors and see if they were willing to have others sitting in. I said it could be beneficial having more than one person relating experiences. They agreed I should get permission first. We also are looking for a place to allow more than one person since my office is not the most convenient.

Allen and Max have been on my case and in my face lately about being a turncoat and helping a type 1. I know this is good-natured as Allen lives three houses away from the now 14 year-old young girl that I wrote about here. He did not realize I knew them until one day this last summer when he saw me visiting with the family. He came over and then Max who happens to live directly across the alley saw us together and joined in. They all knew each other, but not that Lily had type 1 diabetes and her family did not know that Allen and Max were people with type 2 diabetes. What was to have been a short visit from me concluded about four hours later after the evening meal. We all had an enjoyable time and Lily had a great time teasing the three of us asking questions since we are all on insulin.

How Would You React? - P3

(Continued from the last blog - P2) Then a few weeks ago now, they emailed me wanting to know why on a site they had found, the person was so upset about people asking about a number on the meter. It is this blog and I have tried to explain it. I told them that a lot of people don't like to talk about numbers and value their privacy more than talking about numbers, and in this case, it was plainly rude. That while one number does not mean much in and of itself to some people, others rely on this number at the point in time for information in that moment. Others look at the number for the direction their blood glucose may be trending.

While those of us with Type 2 diabetes are looking for trends in our numbers and use them for regulating our food intake, those with Type 1, seem mainly concerned that they have given themselves the correct amount of insulin for the food (carbs) eaten and whether they are going higher, or are on the way to a low. If wearing a continuous glucose monitor, the number is not so much the concern as the direction and speed at which numbers are changing and how much longer the insulin will last. It can be contextual in these circumstances, but for those of us with Type 2, it can indicate trends.

We look at the numbers as indicators of trends that we may need to adjust for in the long-term. This is very true for Type 2's on oral medications and those using exercise and diet to manage diabetes. Those of us Type 2's on insulin do a lot more carb counting and try to cover the carbs to be eaten like the Type 1's, but also are looking for trends and possible insulin resistance.

This of course raised the issue of why the concern. So I took time to explain the diabetes police and some of the other problems that would come her way when school started. I said that if she wanted, she should discuss this with other Type 1's. Fortunately, there were several Type1's available and we had a good meeting the following Saturday, a few laughs, and I think the family came away with a better understanding of the problems of being out in the public or even family gatherings.

The one point everyone raised was to take advantage of the summer and test often as the endo had asked her to do. This would help her confidence and she would recognize the symptoms of heading into a low and know what to do immediately. To watch out if she did not recognize the symptoms and talk to the endo immediately if this happened, to see if a continuous glucose monitor may be necessary. One of the group is that way and showed the family the instrument they were talking about. Then they discussed pumps and among the four there were three different brands.

The biggest thing the group of T1's emphasized was learning how to count carbs and determining the insulin dosage. We discussed many of the sites that would help calculate carbs and other nutrition information. We looked at several of the cookbooks the family had and she had one of the newer versions with the nutrition information with each recipe. The daughter had pulled up several of the sites and bookmarked them as we looked at the cookbooks. I could see the relief on her mother's face.

I know all of the group passed the family phone numbers and said if they had questions to ask. And the last item before we left was to give them advice on meeting with the school nurse and principal before school was to start. The 12-year old really won the hearts of everyone when she thanked each person for their time and input and willingness to be a resource for her to lean on.

As a person with Type 2, I had to admire these people for opening up together and coming to the support of this family. This is so different from what most of my Type 2 friends do. We acknowledge each other, but seldom talk about diabetes individually or when we are together as a group unless it is a support group meeting.

End of this series – there may be more later.

How Would You React? - P2

(Continued from the last blog - P1) We sat down in the Mall and the daughter was full of questions about why the lancet device hurt so much. So it was education time. I asked to see her device and it was the same one that I use. The setting was at one less than the deepest and she had been told to leave it there. I said no, that she could change it to fit her needs and that it was what I had been taught. So we started at the lightest setting and I used mine on my fingers as an example going through several settings. The daughter asked why I did not change lancets each time. I explained that I would have if I was to test on my wife's fingers, but that I did not change until I had too much pain when I used it. I said that she should change when she felt like it or on a certain day each week or month.

Then she ask why I had not used the alcohol pad to sterilize first. I knew then there were problems so I took time to explain that the alcohol pads were only for those times when her finger needed to be sterilized and she could not wash with soap and warm water. I also warned her that if she had been working in the kitchen and handling fruit and some foods, that the alcohol would not remove the sugar and she would get erroneous readings and needed to wash with soap and water to remove the sugar. I also explained that regular use of the alcohol pads would dry out her finger tips and cause cracks in the winter and then testing could be quite painful.

Then she did the lancing and of course flinched. As a result – no blood. I could see that she had been scared on this. So I had her try again with me holding the device so she would not know when it would hit. No flinching and a little blood, but not a sufficient amount for the meter. She said she had no pain, so I set the device to the next level and we repeated. This time there was enough blood for the meter, so she put the test strip where she had been shown and wicked the blood into the test strip. The reading was not great, but for the time of day after a meal, it was acceptable.

We discussed the pressure needed and milking the finger to get sufficient blood. The next one she did on her own and got sufficient blood. She commented that it was a small sting, but not nearly as bad as when she was in the office. We discussed the need for adjusting the device to her own needs and possible differences even on some fingers. The daughter asked if one of the web sites the endo had given them would also cover this. I said it would and from what I remember it is a good site – just not as detailed as it could be.

The daughter said the endo had set up an appointment in two weeks to talk about the pump and some other information. The book they had to order was about pumping and so they would not be ready for the appointment. I knew my neighbor who is a Type 1 had the book and said I would ask him if he would loan it until theirs arrived.

When I returned home, the neighbor said he would loan it, so with my two on counting carbs and his on pumping, I called to say I had them. The husband said he would be by to get them shortly.

When he arrived, we talked further and he thanked me for the two sites I had given them as they were very helpful and he wanted my email and telephone so they could ask questions as they had them. I gave him the information and two other sites for the family to explore. After I sent an email to the endo, I know she sent several more sites including two that I had given.

Continued on the next blog - P3

How Would You React - P1

NOTE: At request of the parents, no names are being used.

Why all the excitement about a blood glucose meter reading? Oh yes, it is just a number, but those of us with diabetes just happen to live with numbers and by the numbers it does mean something. Should we be upset when someone asks about a number when they see us testing? Many seem to get hyper about it. Yes, many get tired of the diabetes police and related reactions for good reason. Some people are just too nosy for our liking, but what the hey – we have to live too.

Granted, I will probably never be in a similar situation, but over a month ago now, I was at a local restaurant with a fellow type 2, and I had a person at another table asked me what my number happened to be. I had not even noticed them watching me. Since I am not bashful, I said what it was. Turns out that the mother was using this as a teaching moment for her daughter. She apologized for asking, but explained that her daughter of 12 had just been diagnosed that morning.

So for about the next hour, we talked about diabetes and what the meter meant to us. The daughter had been diagnosed as a Type 1, so they were thinking I had to be a Type 1 since I used insulin. After a little explanation, they were full of questions about the differences and why some people seemed so secretive and others like myself just did what I needed to do and went on living.

Granted most of the questions were about Type 1 and if there were similarities between the two types. I found out that they had just been to the endocrinologist. I asked when their next appointment was and was told they would be seeing the CDE and nutritionist the following day. So I answered the questions I could to the best of my ability and said that they should write them down so they could ask them again for the right answer just in case. The daughter reached into her school bag and got a pad and pen and started writing and I think this is key – without being asked.

It was most unfortunate or fortunate depending on how you view it that the next day we both came into the hall outside of adjacent offices at the same time. The mother said hello and the endo asked all of us to step into the room and asked what had happened. The daughter said that she had been told by the CDE to limit her sports participation and not to be talking to people with Type 2 diabetes. The endo asked what sports she was involved in. The answer was basketball, softball and soccer and she was hoping to become involved in track – cross country running.

The endo said she would like to see her after she was completed with the dietitian as she wanted to discuss the pump in light of this and she might delay putting her on the pump (and she has delayed it now). Then she asked the mother what books she was planning to purchase at the bookstore. She mentioned a couple of the books my friend and I had suggested and the endo said good, looked at me and said she was going to give her a couple of others to add to this and we left that meeting so the dietitian could start.

On the way out to get me set up for my next appointment, she commented that I had suggested the right books and she would recommend at least two more and possibly a third. As she prepared to leave, she said it sounds like you have a good grasp on most of the differences between the types and to keep it up. Well, I have a lot to learn yet, but at least I have not steered the mother and daughter wrong.

Since I thought that the mother and daughter would be delayed for at least an hour, I took time to do some shopping and then headed for the bookstore. They had finished early, and were there and had most of the books collected, but had not located two of them. Generally I don't like to loan from my library, but this time I volunteered telling them that it would help them decide which book would fit their needs on carb counting. They placed an order for the one the store did not have in stock and we left.

More in the next blog P2 of three.