[ldevmstor]

I don't have diabetes, but my wife is type 1 brittle diabetic. I have done a lot of reading about it, talked to her doctor about it and have been battling it with her for a long time. What we are encountering is, at best confusing, at worst, irritating. We have been told that even though we are doing what the endocrinologist and the family doctor has told us, we are "doing it wrong". We are getting unsolicited information from neighbors, from clinicians who make the same claims, YET, they don't get it that the unpredictability of this illness is indeed PART of the illness. It is NOT take your insulin, eat like your supposed to (we are on a mediterranean diet),and excercise and you won't have huge spikes and drops. Our own experience is that her sugar will rise and fall, regardless of what she does and at the worst times. I have gotten so irritated that we have switched our primary care physician and I am within an inch of telling off these neighbors because not only have they been aggressive with their opinions, they, in some cases, have been down right nasty and rude (one of them likes to knock on my door when I am working online). My question is whether or not others have had this same experience with people (either in or not in the medical community) and what have you done with people like this. Not only does it affect her diabetes but it has a nasty impact on her depression (and mine). If we have to isolate to avoid what becomes almost confrontation, then we will do that. We are kind people and don't appreciate so-called "experts" telling us we are doing it wrong (NONE of them have any experience with this illness at all). Why not tell US how to do it right (since they know so much...NOT!)? I know this is long and rambling, but I am absolutely frustrated and I don't relish becoming unpleasant with my neighbors or doctors, etc. Any advise would be helpful.

 

[Shanny]

Right now, I'm going to move your thread over the our family & friends board since you are not the diabetic in the household.

 

[Shanny]

And now, just so we're all on the same page, how are you going to feel about us if we confide what has worked for us, but it doesn't fit into your game plan? There is a wealth of wisdom, knowledge and experience on this forum, and if you'd rather not hear any of it, you'd better say so now, because the purpose of our being here is to help others find better ways to manage their diabetes. And there ARE better ways. You may think you've tried everything, but we have folks who have managed their type 1 for upwards of 65 years, and are still here to tell about it. Do you want to know how they do it?

 

[Shalynne]

Brittle diabetes is a term rarely used these days. I did have a friend who suffered in that way. She lived in a residential care setting, was fed all the wrong things, and they did not know how to dose insulin, either.

To be candid ... since my own diagnosis, I can now look back and know that her own control when she was (fiercely) independent was never the best.

Your friends and family and neighbors are likely acting strange because this is strange to them. You may never be able to convince them to change -- all you can do is cope with them, and be very careful about discussing personal affairs. (Some folks need to know more, others need know nothing at all. The Big Trick is in figuring out who's who.)

As for medical professionals ... most of us have in-depth experience with bad medical advice. We've had to learn to Do Our Own Thing. Since self-management is the best diabetes management ... blessing in disguise!

If you wish, we may be able to help your wife smooth out her roller-coastering levels. This is what we do for each other.

Just give us the word!

 

[VeeJay]

Might I suggest that you read some of the Introductory threads on this forum. People come here confused and frustrated because what they are doing (which is what their doctors tell them to do) just isn't working. After they learn what many of us have done to gain control, they give it a try themselves, and are astonished at how well it works for them, too.

 

[RobertIA]

I think this link should help - NIH Lists Brittle Type 1 as a Rare, Distinct Diabetes - Diabetes Health

There are some excellent links provided in the article and you need to follow the link to the Brittle Diabetes Foundation.

I hope this helps. I have type 2 and admittedly no experience with brittle diabetes. It is true that the term is seldom used, but that is because doctors do not understand it and can't figure out how to handle it - even most endocrinologists.

 

[ldevmstor]

I have already informed the site administrator that I did not like the tone of the response I recceived from you (Shanny). I found it to be rude, arrogant and presumptuous. I have no problem listening to or trying new things to help my wife, but I refuse to have someone telling me "you'd better" or "there ARE better". Those types of statements with the syntax and word choice as well as typing things in CAPS is the equivalent to yelling at someone. I already have enough pressure under my cork and I think it would be in both, yours and my, best interests for me to simply leave this site altogether. Goodbye. (I trust this is the response you hoped for!)

 

[Shanny]