Type 1 diabetes rant :). ( revised title ). DIABETES RANT.

donnellysdogs · May 30, 2015

Ver sorry @satindoll
It was .@andbreathe that mentioned "self pitying". Please accept my apologies for thinking and using your name with this comment. On iphone I can't scroll back and dit it from a lousy memory and brain.

I was hurt by the branding of "self pitying" as in real life I am one person that never does this.....-although it must have come over in this posting that I was....

Sorry @satindoll...

satindoll · May 30, 2015

donnellysdogs said:
Ver sorry @satindoll
It was .@andbreathe that mentioned "self pitying". Please accept my apologies for thinking and using your name with this comment. On iphone I can't scroll back and dit it from a lousy memory and brain.

I was hurt by the branding of "self pitying" as in real life I am one person that never does this.....-although it must have come over in this posting that I was....

Sorry @satindoll...

Apology accepted in the spirit it was offered.

Jaylee · May 30, 2015

Anaelena said:
I see , so what makes what I said valid is adding type 2 to the equation ? One thing I also have learned in life , which I suspect as "an older" person you already know is being "inferior" is a mindset that only you can set . No one else can "make" you inferior. As a child however , adults around you can say things that get to you . Being 7 years old and constantly scolded by the adults (who are uneducated about diabetes) around you for eating this or that is difficult. As an adult you can educate as a child it is not as easy . So if we want to discuss "feeling" inferior . Yes as a child I often felt that .

As far as the placement of my post . I am new here and just posted . I did not realize this was a war camp with sides . I now have learned to remain on my designated territory,

My opinion on any opinion is that all are worthy of consideration. I can even make exceptions for you inferior type 2s

I knew I shouldn't have said anything when I saw the word "rant" in the title.. In spite of the buoyant mood I felt rolling in from a a gig last night.
That said. I took the power back in my childhood. Around the age of 12 I broke into a lodging student nurses room while she was out clubbing. My mission? Because I chose to accept it. Was to feast my eyes on her medical books because I was fed up with being fobbed off with the "Janet & John literature on Diabetes they handed out to kids at the time.

Knowledge is power & when accosted by the stupid misconception of the non D I reply on behalf of all types with the zeal & speed of a cattle auctioneer. A bit like the voice over "terms & conditions apply" at the end of any TV ad involving a financial arrangement.

So I took the power back a long time ago. & offer fair play to others.!

I don't do smaltzy hugs.. But I do offer virtual peace.. I sincerely hope you accept?!

Anaelena · May 30, 2015

You know diabetes is interesting . I have seen both types with people who live with no complications no major issues . I have also seen diabetics with severe difficulties. Here is my stance on this .. And I ask you to take YOURSELF out of this equation . Listen as you would a friend. When I was diagnosed as a little one , I was in the hospital , out of a coma , confused seeing my father next to my bed kneeling and crying . I had never seen my father cry and never have since . I am a mother and cannot imagine what he was going through. Keeping in mind that 36 years ago things were different. He cried because his baby was sick, he knew the obstacles I would face, because he had guilt and he had no idea what would happen . My first few honeymoon years were okay , but I am not a lucky one and soon complications set in . Starting with diabetic hand syndrome , I have had many surgeries to release my contractures, constant foot issues including breaking of toes unknowingly, ulnar nerve release , carpal tunnel release both hands , dialectic neuropathy, diabetic retinopathy I had a victrectomy because I lost my vision, I have had neck surgery , my joints are sticky because of build up of old insulin, I have heart failure , shoulder surgeries . I also have gastropaesis . I can no longer eat solids and so am on a liquid diet. My point ??? This did not start at age 40, 50, 60 this started at age 7. I maybe selfish or maybe just a plain bad person but at times it is hard for me to once again listen to a older person complain about their neuropathy. When I have had it on and off for 36 years and when I was a child had to work through it. Nobody cared if I had neuropathy. Yes we all have issues and feelings and whatever else comes with this disease. Yes it can be worse but I cannot apologize for feeling bad for myself because I do . When I discuss my health issues in a Drs office it is with 60 and 70 year olds not 30 year olds because I relate to them . I feel bad I did not have at least 20 years to screw myself on my own my body did it for me . They say this ... Type 2 diabetics are constantly being blamed for their disease ... While type 1s are constantly being ignored for theirs. I won't blame you , if you don't ignore AND compete with me .

Anaelena · May 30, 2015

Jaylee said:
I knew I shouldn't have said anything when I saw the word "rant" in the title.. In spite of the buoyant mood I felt rolling in from a a gig last night.
That said. I took the power back in my childhood. Around the age of 12 I broke into a lodging student nurses room while she was out clubbing. My mission? Because I chose to accept it. Was to feast my eyes on her medical books because I was fed up with being fobbed off with the "Janet & John literature on Diabetes they handed out to kids at the time.

Knowledge is power & when accosted by the stupid misconception of the non D I reply on behalf of all types with the zeal & speed of a cattle auctioneer. A bit like the voice over "terms & conditions apply" at the end of any TV ad involving a financial arrangement.

So I took the power back a long time ago. & offer fair play to others.!

I don't do smaltzy hugs.. But I do offer virtual peace.. I sincerely hope you accept?!

Absolutely my friend.

Anaelena · May 30, 2015

CollieBoy said:
How do you know she could have got T1 at that age, the doc may have mis-diagnosed!.
Apart from that most of the rant is IMHO justified & a lot would apply to T2 as well

Well in this instance she is hypothetical and applies to my hypothetical rant So only I can hypothetically determine that !

Anaelena · May 30, 2015

CarbsRok said:
I live a very sheltered life as very rarely had comments about having diabetes from the general public.
Only ignorant comments have come from the medical profession. "oh you look to old to be type 1" is the normal comment.

Balancing things out though, how many forum members actually knew anything about diabetes before they were diagnosed themselves?

I was forced to learn lol

Anaelena · May 30, 2015

nosher8355 said:
I've tried so hard to not say anything here.
I have RH, and I am so lucky not to have T1,T2, 1.5, Lada etc.
I am also blessed not to have diabetes, unlike my brother, who died 7 years ago of heart failure.
My uncle had it, the wife has it, the father in law has it, and yes I do know what it is like to be treated by friends, colleagues, acquaintances, enemies, doctors, dsn's, specialists(!!!). Who thought because I had been diagnosed with diabetes, that I should be doing this, that and the other!

Since diagnosis, I get, so you are diabetic!
You need insulin!
You need to eat properly!
What, meat and salad only?
What happens if you are ill?
My god, never heard of it!
What drugs are you on to treat it?
What drugs do you need to eat properly?
Go on, have a pint!
So no spuds?
What do you have to eat in a restaurant?
The chippie is out then!
If you have an Indian, what do you eat?
I was having a hypo in hospital and the senior diabetic sister made me have a bottle of lucozade!
Why do you need a necklace, that says that?

Need I go on.

As a Reactive Hypoglycaemiac, I thank whoever, that I don't have diabetes!

But,

In my diet, I can't bolus for carbs, I can't use insulin for the day! (I apologise for probably getting it wrong!)
That's how difficult and different we all are!

I have no choice but to eat seven small meals a day, very, very low carb, because if I don't, well I've been there once, and I'm not going back.

Someone who posts, has a signature that goes something like this.
Be thankful for what you have, it can get worse!

You are right . I wish I had the luxury of eating . I no longer can eat solids . So enjoy your seven meals a day . be thankful . Liquids aren't that fun

Pipp · May 31, 2015

Anaelena said:
You know diabetes is interesting . I have seen both types with people who live with no complications no major issues . I have also seen diabetics with severe difficulties. Here is my stance on this .. And I ask you to take YOURSELF out of this equation . Listen as you would a friend. When I was diagnosed as a little one , I was in the hospital , out of a coma , confused seeing my father next to my bed kneeling and crying . I had never seen my father cry and never have since . I am a mother and cannot imagine what he was going through. Keeping in mind that 36 years ago things were different. He cried because his baby was sick, he knew the obstacles I would face, because he had guilt and he had no idea what would happen . My first few honeymoon years were okay , but I am not a lucky one and soon complications set in . Starting with diabetic hand syndrome , I have had many surgeries to release my contractures, constant foot issues including breaking of toes unknowingly, ulnar nerve release , carpal tunnel release both hands , dialectic neuropathy, diabetic retinopathy I had a victrectomy because I lost my vision, I have had neck surgery , my joints are sticky because of build up of old insulin, I have heart failure , shoulder surgeries . I also have gastropaesis . I can no longer eat solids and so am on a liquid diet. My point ??? This did not start at age 40, 50, 60 this started at age 7. I maybe selfish or maybe just a plain bad person but at times it is hard for me to once again listen to a older person complain about their neuropathy. When I have had it on and off for 36 years and when I was a child had to work through it. Nobody cared if I had neuropathy. Yes we all have issues and feelings and whatever else comes with this disease. Yes it can be worse but I cannot apologize for feeling bad for myself because I do . When I discuss my health issues in a Drs office it is with 60 and 70 year olds not 30 year olds because I relate to them . I feel bad I did not have at least 20 years to screw myself on my own my body did it for me . They say this ... Type 2 diabetics are constantly being blamed for their disease ... While type 1s are constantly being ignored for theirs. I won't blame you , if you don't ignore AND compete with me .

@Anaelena I acknowledge you have had a tough time with your diabetes. It is so sad that your childhood was marred by such bad health experiences. Also that you still suffer. I certainly do not want to compete with you or anyone else as to who has had the toughest time. I do not want pity from anyone, so will not list the medical complications I have had since childhood, or the awful damage from some of the treatments I have had. Instead I would congratulate anyone who, like you, and myself, has overcome many obstacles to have had a career, successful marriage or partnership with someone who has also had a successful career, and despite all odds has given birth to, and raised children, who have in turn become successful in their chosen careers and become really decent caring people. We taught our children that empathy for others means that you have to consider that your own opinions and beliefs may differ from others but everyones opinions and beliefs have validity. If they expect others to understand their beliefs and have empathy then it has to be a reciprocal arrangement.

Your original post was a rant by your own admission. That and later posts suggested you have anger and hurt that is unresolved. I am so sorry for you that you still have pain. You are not alone. My first response to your post was my way of trying to agree you had it tough. I was trying to support what you were expressing and to be more inclusive. It would appear that some have misinterpreted that and tried to make this a devisive argument. That was never my intention.

I hope you can find peace and be well.

Pipp · May 31, 2015

Anaelena said:
You are right . I wish I had the luxury of eating . I no longer can eat solids . So enjoy your seven meals a day . be thankful . Liquids aren't that fun

@nosher does not and has not had an easy time. Yet he does not complain. (Well not much). Read his blog. Very informative..

MarkE · May 31, 2015

tim2000s said:
[snipped]

If people are insensitive I find that making equally insensitive comments back about something they have no control over hammers home the point that they might want to consider what they say.

Speaking as an Aspie- be careful with this tactic. It can get you in major trouble!

Like the idea in principle, mind...

Anaelena · May 31, 2015

Pipp said:
@nosher does not and has not had an easy time. Yet he does not complain. (Well not much). Read his blog. Very informative..

In no way am I implying that @nosher has not. What I believe he said was be thankful because others have it worse. I said that he was correct. My point being that yes eating seven small meals a day is a hassle & time consuming. So are feeding tubes and liquid diets. Trying to eat when you want to vomit . Does everyone here know what diabetic gastroparesis is ? This maybe surprising to some but we in America don't have as many options as they do in Europe. Medications that help gastropaesis were taken off the market because some people complained of diarrhea. The other option is a gastric pacemaker which is given on a "compassionate" basis and only allowed at a certain rate , basically impossible to get . I also am not sure if you are implying that I am complaining or not but yes , I do complain. ALOT. I suppose that would be the purpose of a rant . The other side of that on a diabetes forum I assume we share health conditions which is not necessarily complaining . Just facts as I said previously. I am not angry , I am just passionate

I will definitely read his blog .

Lamont D · May 31, 2015

My wife has T2 and she has not been diagnosed with gastropaesis. But she does have very slow digestion and vomits food quite often, the drugs she takes for her back pain and subsequent disabilities and symptoms, that I do have sympathy and empathy. I have to do the cleaning up afterwards. She has to wait for me, so that she can go somewhere. Life's a struggle in more ways than you would want.
I like a rant, it helps, as long as you don't intentionally hurt someone, then rant away.
There are so many people I'm angry at,through my battles and the wife's.So rant away. I will join in!

Anaelena · May 31, 2015

nosher8355 said:
My wife has T2 and she has not been diagnosed with gastropaesis. But she does have very slow digestion and vomits food quite often, the drugs she takes for her back pain and subsequent disabilities and symptoms, that I do have sympathy and empathy. I have to do the cleaning up afterwards. She has to wait for me, so that she can go somewhere. Life's a struggle in more ways than you would want.
I like a rant, it helps, as long as you don't intentionally hurt someone, then rant away.
There are so many people I'm angry at,through my battles and the wife's.So rant away. I will join in!

Thank you so much Nosher. I am very sorry to hear about your wife. It is not easy and as I said on my original post .. diabetes it hard not only for us but for those who love and support us. I do hope I have not said anything to hurt anyone as I said , I am just passionate. ) I am glad you understood my point .

Lamont D · May 31, 2015

I hope you have read my first blog. It should have been titled, 'My Struggle'. But someone infamous beat me to it!

Anaelena · May 31, 2015

@nosher8355. I am still learning the app and am not sure how to find the blog ? Is there a link ?

catherinecherub · May 31, 2015

Here's a link to @nosher8355 's blog entries.
http://www.diabetes.co.uk/forum/xfa-blog-browse/nosher8355.85785/month

Anaelena · May 31, 2015

catherinecherub said:
Here's a link to @nosher8355 's blog entries.
http://www.diabetes.co.uk/forum/xfa-blog-browse/nosher8355.85785/month

Thank you so much !! Appreciate that .

Lamont D · May 31, 2015

catherinecherub said:
Here's a link to @nosher8355 's blog entries.
http://www.diabetes.co.uk/forum/xfa-blog-browse/nosher8355.85785/month

Thanks @catherinecherub, much obliged!

RuthW · May 31, 2015

Anaelena said:
I revise this now to include all and any diabetics... I am not one to purposely leave others out . I only wrote this as my own experience as a type 1 . It s purpose was not to state type 2s do not have the same issues... And now MY UNEDITED RANT OF THE WEEK...In the summer I turned 6 I was diagnosed with Type 1 Diabetes Mellitus and no, I do not have the same type of Diabetes that your Aunt Bertha got at age 65. They are totally different. There are about 23 million people who are Diabetic and only 5% of those have the same type I have..When I was a kid I was asked and told the most ridiculous things, not by friends or other kids but by Adults. "That is what happens when you eat to much sugar", "Is it contagious?" "My friend had that and it went away" Often times they would blame my parents or even me. Of course now that I am a loud mouth adult those comments would never fly..

What not to say to me A TYPE 1 DIABETIC...

1".Can you eat that or should you be eating that?"...I have been diabetic for 36 years, do you think I dont know what I can and cannot eat? I never say to a fat person can/should you eat that ? So show me some consideration.

2" Do you have BAD diabetes?" What do you think genuis? Is there a good Diabetes? All Diabetes is bad not only for the person who has it but for all the people in their lives who must deal with it too.

3."If you'd just exercise…or If you'd just eat better"…Type I diabetes is an autoimmune disorder, unrelated to diet and exercise, It was not my parents fault, it is not my fault. Call it bad luck but unlike some type 2 diabetes it cannot be prevented

4."You don't look like a diabetic!".. Maybe it is meant as a compliment but just dont say it. It sounds as bad as someone saying" you dont look like a drunk!"

5. "My grandfather had that and he lost his leg, eyesight and eventually died of kidney failure." Gee thanks for that enlightening story. Can't wait to share that wonderful story with my kids tonight at dinner. Guess what? Your Grandfather was 80, probably had really good health most of his young life. I have had more surgeries and complications then I can put on both hands. I am alive and kicking and hope if I am lucky and with the Good Lords help to make it to your Grandfathers age. Can you explain to me why you would tell me that?

6." I could never do that." (Inject insulin, test blood.) When I was a little kid nobody asked me if I wanted Diabetes. Nobody asked me if I could do it. They never asked my parents if they could. Your saying you would rather be dead then "do it" or that you would give up on life? Spare me.

7. "Oh how sad, you"ll never have children"....ahhhhhhhhhhhhhh surprise! Meet my two beautiful boys .

8 " I have seen Steel Magnolias" ...yeah, great she dies at the end. To me this is the equilevent of telling every black person you meet you saw the color purple or every Mexican that you saw... I was born in East L.A. or every gay man Birdcage. Steel magnolias has nothing to do with me and doesn't mean you understand my disease. thanks

9. "There is a cure but drug companies dont want the public to know"..I can write a book on why this comment is so bad..but I won't.

I hope a cure will be found for both Aunt Bertha and people like me. Until that time try and remember we all have our struggles. Think before you speak or even acknowledge you dont know the difference or that you really don't care. Just leave the lame comments for someone else.

Best rant ever! But the good news is that you eventually reach the point where you laugh when people say that stuff!

Type 1 diabetes rant :). ( revised title ). DIABETES RANT.

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