Imagine my surprise when I looked at my profile and saw there no longer was any type of diabetes listed. Yay, I’ve been cured! Since, unfortunately that is not the case, I went in to edit my type and discovered the only option available was “Either I or a loved one have Type 1 or LADA/1.5”! Forgetting the fact of how much I hate the designation “1.5” being that I am neither halfway between Type 1 and Type 2, nor am I a software version…this really doesn’t tell me something specific about a person at all!
I know there was a discussion of what we would like to see changed in the Profiles, but nowhere do I remember seeing “combine loved one with type 1 or LADA, and self with type 1 or LADA”! I really would have a much different response to the post of someone saying their husband was type 1, vs someone themselves just diagnosed with type 1, vs someone with LADA!
What’s up, guys? Am I the only one who doesn’t think this is very useful?
If someone’s husband has T1, the spouse will be looking for the same information a T1 is. I can’t imagine a response being different other than telling someone that their spouse has to be the one that wants to do it. We are still going to recommend the same things.
I hope I can still get test strips, now that I’m type 1 OR 1.5? I am a bit fuzzy on 1.5 and LADA but I am fairly certain I don’t have them? At least whatever changed didn’t trash the sumptuous design on my page!!
I had to go look at your page! All this time that I have known you, I did not realize that you were also diagnosed in 1984. I knew you had it for a long time but didn’t realize how long!
I actually disagree, Kelly. I would talk much differently to a spouse than to the person with Type 1 themselves, encouraging them to direct their partner here, talking about the way they can best support their partner, (including as you say, talking about the pitfalls of trying to “do it for” their partner,) etc. I would also go into less detail about the specifics of management. If it was a parent of a type 1 there would be other issues to talk about. To me, having worked with the relatives of people with mental illness and addiction, there are definitely other issues that come up.
I would definitely respond differently to a (newly diagnosed) LADA than a Type 1, who might be dealing with issues of an older person, lack of understanding from professionals and decisions about treatment early on, etc. I just don’t see how it’s useful to group so many things together!
I would still give them the same info. Some people just don’t like getting on the computer and if it meant coming here to get information, they would never get it. If it were my brother-in-law needing information, he wouldn’t be looking for it, my sister would. She would print out what she found and let him read it. My brother is the exact same way. I think most of the parents do realize treatment for kids would be a little different and they usually say, “my son or daughter”" when they are asking the questions.
I agree with you that there are differences in people producing some insulin as opposed to none at all, and my response is different. Manny is LADA and he responded the other day in that original thread that he felt they could be lumped together when someone questioned it. You should go look for that thread and see how he responded to them.
I think we will just have to agree to disagree. I don’t need to look up Manny’s post to know that I disagree. Yes, LADA IS Type 1 - to people who aren’t really interested in all the ins and outs I usually just say I have “Type 1 diabetes”. On the other hand, when I first came on here two and a half years ago and had been misdiagnosed type 2 due to my age and was trying to understand why after 15 months on oral meds my numbers suddenly started going through the roof and I knew I needed insulin but didn’t understand why…that difference was enormous! When my cardiologist said, “your risk factors are greater because you have had this condition all your life”(as in 50 years worth) the fact that I’m LADA and was only diagnosed 4 years ago makes a big difference. If someone comes on here confused and anxious as I was back then and says they are LADA I know a whole bunch of specific things about them I wouldn’t if they were included in a larger category.
As for loved ones, I guess my training just has me responding to their needs as well as the information they want to pass on to the PWD.
Useful. I’ll still enjoy everyone the same. Love you all whether you’re T1, T2, T3, T4 . and when they figure out it’s all just progression of auto-immunity in its manifest forms, how’ll we change? … spouse or non-spouse, mother, girlfriend, father, boyfriend. What does it matter? As we read a post, we get to know a person’s problems, their hopes, about what/how they were/weren’t diagnosed, and how we’re all coping with this one way or the other. I’m 75% toward type 1.5, but 55% beyond Type 2 and being treated 100% as Type 1 with a spouse who is 100% Type 0.15, which I hereby designate as having a BG of 92mg/dL, e.g., 5.06 mmol/l on fasting, a BG of 115mg/dL, e.g., 6.33 mmol/l, 1.45 hours after eating, and an A1c of 5. Cheers, everyone! We’re still all here!
For a long time I wasn’t 100% sure if it was 1984 or 1985 but I figured it out. I had a lot of years off of the reservation, free drugs/ needles @ student health, then a seriously long time relying on Walgreens to get my Rx’s refilled, despite the doctor’s threats to cancel them if I didn’t get in to see her, etc. I still was @ 5.8 when I went to see a (new) GP sometime in the early 2000s and sort of got a big more organized but not really.
I am not disagreeing with the LADA part Zoe, so I won’t agree to disagree when I agree with you in the first place! I am just saying Manny is the one that decided that and he has LADA. He did give an explanation why he did it, I just don’t remember the why part. Even when people think they are T2 like you did and they are having all kinds of problems, I will tell them to get tested. Hopefully people will put in their posts that they are LADA and people like you can point them in the right direction.
I understand that the person seeking has needs also and they need help too. Again, hopefully the person will say that they are looking for info for their husband and everyone can respond how they feel best.
I always had trouble remembering the year also but I had a bet on the Super Bowl that year - I won a case of beer and then didn’t collect it because I thought I could never drink again. When I can’t remember, I look up the Super Bowl. Now I have a typed up medical history form that I keep it on so I can look there.
I love everyone regardless of what type they are also. It does matter some in how you give advice to that person. Someone still producing insulin is going to have a different result than someone not producing insulin. I was trying to help a T2 with insulin resistance once that had DP. I told her to take 1 unit of insulin when she first woke up. She laughed because she knew that wouldn’t work but someone else without the experience wouldn’t realize they need to adjust that 1 unit to 10 units because of the insulin resistance. I wouldn’t begin to know how to help them adjust insulin. I would still try to help someone with T2, but I would add in my response that they will have a different result from what I do because of insulin resistance or them still producing insulin.
Ah, then we can agree to agree! (This is getting convoluted!). I actually did make an attempt to search for the discussion you mentioned but don’t have much luck with the search feature on here - I just got some discussions from 2007 and 2009! I’m going to assume he makes the point that LADA is, for all intents and purposes Type 1, which I agree with but also like that this is the one place that people understand the subset of LADA and the unique experience that many of us have gone through.
I guess bottom line is I don’t understand having a question about type and then bundling several categories all together.
I found the link to that discussion. If you scroll down towards the bottom, Manny responded to Trisha’s comment that they should be separate. He said that not many people actually separate them out.
Thanks for the link, Kelly. I was away on Wednesday -see what happens when you miss just one day on here? Out of the loop! I wouldn’t even have known the Types had been removed and needed to be reentered!
I guess it makes sense that admin is responding to the fact that not many people separate them out. I still disagree though and wish they’d been left separate as well as separate from the “loved ones” category. I know …I’m stubborn!
I absolutely care about all PWD’s - that goes without saying, and I feel it’s not contradicted by wanting to know type or even feeling you have more of a connection to those of your own type.
I agree with Kelly that there are differences in specifics of advice and experience. As a LADA four years in I am no longer producing my own insulin (or producing a very minute amount) so my day to day management is the same as any other Type 1. But - and perhaps it’s my psych background - I think “where we’ve been” is a large part of “who’ve we become”. My life experience as a LADA who was disgustingly healthy until age 58 is very different from a “classic” type 1 who was diagnosed in childhood and for whom type 1 was inextricably bound up with their development.
