Discussion in 'General Discussion' started by kas77, Jun 7, 2010.
and you weren't the only one thinking it, judging by the PM's I got...
This is so sad to me. You all will be the first to hang someone for their lack of knowledge but also for trying to learn. I know there are lots of threads I have missed and I dont know the whole story but this is awful. I really dont care if you have diabetes or a child with diabetes I will tell you what you want to know in the case that one day it will help someone. I have always said that if I help one person with diabetes then my sons diagnoses was not in vein. And I have helped several people and hope to continue. I have learned so much from this board and have come love some of you here. But there are times I just shake my head and go on because of things like this.
This is so untrue, I have to just laugh. I can't imagine how many hours upon hours many of the posters in this thread have spent patiently explaining the same things over and over to various posters on this board. They're the same posters who always comment when someone is having a diabetes anniversary or when someone posts a happy little "progress report" on their D kid, often when no one else does. So for you to claim that we are hanging someone for their lack of knowledge is just absurd.
This particular poster came to the board with a very weird, fact-shifting story. Her reasons for wanting to stay and ask questions are strange and frankly don't make a lot of sense. Her pattern is to do her best to call attention to herself and her situation. My comments in this thread (and the comments of others, presumably) are directed to the OP, and should not be taken as comments toward posters in general.
If I went to a board for kids with cancer and acted the same way as the OP has, I'd expect to be ridden out on a rail. And rightly so. Until this latest thread ASKING what we think of her behavior here, everyone has bitten their tongue and been more than tolerant of the whole strange situation.
I love the way you wrote this, I think it was necessary for someone to say something like this. Everyone should be welcome here.
I was refering to the threads that so many post about some stranger who doesnt get it or a family member who makes a comment that is totally wrong. I agree it is irritating but I was the uninformed before Sam's diagnoses. Like I said I dont know the details but if you feel so strongly about the op why dont you just quit opening or commenting on her threads?
I actually don't expect anyone who doesn't have experience with D to "get it" and honestly think many people on here hold the general public to too high of a standard in that regard. I know nothing about cystic fibrosis, and could conceivably say something really stupid about it (or any number of diseases) to someone. It's silly to expect people who are not living it to get it.
I don't just quit opening or commenting on the OP's threads, because it's not how I choose to deal with these situations. You're, of course, free to make your own decision in that regard as well.
I have friends with children with Aspbergers syndrome, a friend with a child that has Williams syndrome, another has a child with Trisomy 18, I have an Aunt who has cerebral palsey she now is confined to a wheelchair. I love these people therefore I try to learn what I can about them or their childrens conditions by studying on the internet, reading in books about their childs conditions and I ask them if I dont understand something.
I hope that the people that care for me will do the same about my childs condition. If I wanted to go to a forum about any of these conditions and learn more I certainly would do that. What I would not do is bring attention to myself by asking questions and posting threads asking people if its ok if Im there even though my children or I dont have any of these conditions at this time.
We have assertained that this is in fact an open, public forum. All one has to do is come in and register and then look around to your hearts content, ask questions if you like but I think its only fair to let people know certain things about you first, whether you or your child have type 1 diabetes. If not state that at the bottom. Also I think it should be noted when someone is, say, a young child under the age of 16. You dont have to put your name or where you live.
I didn't quit commenting on her threads because she would post questions and ask for advice, even though she, and none of her children, have Diabetes - much less Type 1. We often give psuedo medical advice on things that she posted - like food, exercise, and interpreting blood sugar readings. Every person that responds needs to be aware that this is not about Type 1 because we CAN AND DO give the wrong advice since our focus IS TYPE 1.
I can only give advice on what I know. I do not mind answering any and all questions, and in my many years as a member here, I have spent 100's, or even 1,000's of hours doing so. There is no stupid question when it comes to diabetes. But, the way the poster presented her self in the past (WHICH SHE HAS SINCE REMEDIED WITH HER SIGNATURE AS OF YESTERDAY) was not upfront about the fact that she had no immediate ties to diabetes and was:
Seeking information on having her child diagnosed with Type 1
Seeking information on having her sister diagnosed as Type 2
Seeking information on having her child diagnosed as Type 1.5
Seeking information on why her non-diabetic child would experience dawn phenomena
Seeking information on herself being Diabetic
Wondering how eating certain foods affect nondiabetics
Wondering how swimming affects blood sugar
etc, etc, etc...
Like, say, a 13 year old girl perhaps?
I decided to come back and apologize for my response in this thread earlier. In hindsight I wasn't very nice which considering what I was upset about in the first place is rather hypocritical. Anyway I do apologize.
For what it's worth I may not have very much in common with you parents but I do admire you and what you do for your kids. I may not agree with everything on these boards but I do believe you are heroes in the diabetes world.
Thank you very much for your kind and gracious words Diana:cwds: Wishing you and yours all the best
I'm sorry to hear you have felt unwelcome--I however, have never known the "regulars" of this board to be anything but helpful when someone truly needs it. I am also sorry to hear that you feel the need to decrease your time, effort, and money to Type 1 diabetic children based on the feedback you receive from the small community that is on CWD. Our children, after all, are the ones that are suffering and I truly hate to hear that you feel the need to give your time and efforts elsewhere, neglecting the true reason for this website which is the precious children dealing with this horrible disease.
So you don't accept her apology???
If this was a forum of advocates and educators and it was our stated goal to raise awareness about Type 1, then I'd say you have a point. But, since that isn't what this forum is ... well then, your criticism is pretty much irrelevant.
You are joking, right?
I think I won't try to figure out why you ask this.
Well first of all I didn't really mean to bring this the forefront again but let me see if I can better explain some of the frustrations I've experienced over the many years that led to me spouting off in the first place here. So first of all it's not really CWD it's just this thread kind of was the straw that broke the camel's back.
You see in effect I feel like I've been in no man's land for many years now in terms of living in the diabetes world. It gets frustrating. I was diagnosed 22 or 23 years ago when I was in my 20's. I was diagnosed with type 2 diabetes but there is also a possibility I actually have LADA. I'm obese and was diet controlled for nine years, and do have a positive c peptide (or at least I did 4 or 5 years ago) albeit a low one. There's other things too which point to type 2 which I won't get into. But neither am I terribly insulin resistant nor do I have dyslipidemia. My sister is Type 1. I'm on a low dose of insulin compared to many with type 2. When I failed diet and exercise pills didn't work and I went directly to MDI. Because I was so young and had an atypical type 2 presentation I was treated very aggressively for which I am thankful. Anyway I've been on MDI for Lord knows how long it seems forever and I have been on an insulin pump for 8 years now and have a CGMS also. As far as pursueing the LADA diagnosis at the endo we've discussed it but haven't done it as at this late in the game it would be an academic exercise only as I am getting the correct treatment for either diagnosis and it's all being covered by insurance.
Anyway here's the difficulty. Type 2 boards are typically people with prediabetes or newly diagnosed on oral meds. Even if they have been on insulin it may be just a basal insulin. There are many years and many steps before a Type 2 would require intensive insulin therapy. So it's hard to find info and support on those boards for my current situation. Type 1 boards have more information on the insulin and all the things that go along with this but often also a general attitude of negativity towards those with type 2. Things like the epidemic of type 2 is causing problems for type 1's. It makes me so mad when someone with type 2 yada yada are not unusual comments here or on other boards. Type 2 patients get really tired of hearing that you did this to yourself etc etc so there's a lot of pointing fingers from both sides that have gone on over the years. There's a tremendous amount of misconceptions and misinformation on both type 1 and type 2 diabetes not just in the general community but also among those with diabetes. I've read some rather entertaining and very contentious threads over the years about type 1 vs type 2.
Type 1 and Type 2 are completely different animals and it's hard for one to understand the other as experiences are completely different. And that gets even more complicated for people like me who end up with a mixed bag picture and a foot in both worlds.
So yes I get frustrated with all of this bickering that exists between those with type 1 and type 2. This is not a race to see who has the worse diabetes. I for one think that a little more tolerance from all of the people in the diabetes world is badly needed even if you can't fully understand where the other is coming from.
Regarding my personal efforts at advocacy. I know it sounded like I was taking my frustrations out on your kids. That was wrong and I'm sorry. It's true the diabetes wars have affected my advocacy efforts but in this regard I'm not too happy with the diabetes community in general so this affects what I do for type 2 also. I tend to direct my efforts more to global diabetes issues that would affect everybody or to other health issues. Money is still tight and can only go so far.
I still believe very strongly that this sort of negativity reflects badly on the diabetes community. Threads like this will garner attention. Look at the number of views this thread has gotten. That's why I am apologizing. I contributed to fueling the flames and that was wrong. I'm just as guilty of what ticked me off in the first place so for that I am truly sorry.
In case you're wondering why would an adult who doesn't have a child with diabetes would want to read on this board it's because I think you have some of the most knowledgeable people here who give very freely of that knowledge in terms of pumps, CGMS, MDI, and all the ins and outs of the various insulins and how they work. Tudiabetes is great too but it can be daunting to find stuff it's so huge and info gets buried or is hard to find. The ADA boards don't work real well any more in that it's hard to even get on there. Here you typically post little tidbits about life on insulin on a regular basis and it's easy to find. Usually the first page of the parents board alone has useful information so is never a waste of time to read.
Ok just read some of the responses made while I was composing my response. Obviously I've stepped on a few toes here and I am sorry.
I can take a hint though. I will refrain from all further comments and lurk only. Good luck to you all with your children.
Diana, I do know what you are talking about with the whole type 1 vs. type 2 thing. I have seen people on this board (who should DEFINITELY know better) say rude and ignorant things about type 2s. Most of the time people step up and correct them, but there is a lot of bias and ignorance out there about type 2 that I'm sure you have to deal with.
Also, what you said about it being difficult to find good information on boards about insulin-using type 2s makes sense to me too. If you're finding good info here, I think you should feel entirely welcome to stick around and read AND post. I think you've had some very good posts since you've been here, and in my opinion, your input is very welcome. There are a few other type 2s who are regular posters, and I have always welcomed their presence and input.
You are truly reading into this thread more than is there. The comments were directed to the OP, who presented on this board with a really...odd story, with facts that changed, and with a decidedly attention-seeking manner. I do not think that you should take anything said in this thread personally (although I understand how you may have), as I do believe that people were speaking to the OP and not to type 2s in general.
Separate names with a comma.