Brittle Diabetes


(system) #21

[quote user="Jonathan Clark"]

I agree with Michael's response. I thought I saw at one time a statistic where about 80% of type 1 diabetics will develop some complications due to the disease sometime in their life. Yes better control can help reduce complications, but I don't believe good control will ever eliminate complications. The longer you have D, the more chances of you having even brief highs, will increase vascular problems which are the root cause of most of our complications; kidney, eye, and appendage problems. 

I don't like looking thru filtered glasses when I am looking at life, tell me how it is, and deal with it.

[/quote]

I am not disagreeing with that part. I know that one day I'll probably end up with a complication, but choosing to focus solely on that would crush my personal will to take care of my diabetes. Personally, I choose to believe I'll live a long life instead of choosing to focus on figuring out what complications I'm going to get down the road because I'm not able to have "ideal" control(or even if I was able). if i focused on the fact i'm "suppose" to die young, "suppose" to be ill for the rest of my life..i would've probably off'ed myself years ago.

to me, telling someone they are an idiot for wishing to focus on the positives to get through day to day life, rather than the negatives, is a little much.

yes, we need to know that one day a complication could arise for each of us in one way or another. do we need to focus on it daily? dwell on that fact? or do we need to live our lives the best we can TODAY, do our best TODAY to feel/be healthy in this every moment?

 

while i hardly think there will be a cure one day, or that insulin in a cure..i don't think it's necessary to pity ourselves for what will happen in the future regardless of how hard we try..because how many of us would still try?


(paulg765) #22

... Furthermore, the urgency to find a cure is better served by realistically reporting the complications, hardship and suffering caused by Type 1 diabetes. On the other hand, by putting forth the opinion that people with Type 1 diabetes can (and do) lead long, productive and "normal" lives will unfortunately not strengthen the case for finding a cure as soon as possible.


(system) #23

Just because I choose not to live my life thinking i will drop dead tomorrow due to liver failure, doesn’t mean I people shouldn’t be aware or that we shouldn’t be looking for a cure. I still do stress when people ask that my chances of dealing complications in the near future is extremely high, and that insulin is far from a cure…doesn’t mean that as an individual with T1 I need to be thinking everyday “who cares if my bloodsugar is high, who cares if I eat this cake without shooting up? I’m gonna die in a few years regardless!”


(sarahslp) #24

What I disagreed about in Michael's post is the statement that T1 becomes harder to control as you age. I've had this f-ing disease for 28 years, but my control has gotten better and better. I attribute it to a mix of better treatment options, more experience, the end of hormonal changes w/ puberty, increased motivation. If anything, I feel more and more hopeful now that my a1c's are better.

We should all remember that OUR experience may not apply to every T1...


(cptsales) #25

I believe most are taking Michael's comments incorrectly. Not one comment above says we live in fear day after day of complications and what will be next. I can only speak for myself after having this disease for over 27 years with so far just some eye problems which my ophthalmologist was able to work on, and some slight decrease in feeling in my feet. I do not think daily of what will happen next, but when I have some high BG I do think about it. Is is daily-no, weekly-maybe, monthly-for sure. Does it get me down and depressed from time to time, for sure. Chronic illnesses such as ours has many adverse effects that can wear on you both physically and mentally over time.

Through better drugs and treatment options it has gotten easier to control, but the unexplained swings will always be there and makes me wonder, was it what I had for dinner last night, breakfast or snake that caused this, or was it no exercise that did this to me. Most of the time I will never know as I eat mostly the same thing every day, and a lot of times the same thing for different meals, yet the BG is not the same after. 

In the end we all need to be aware of the long term complications that can develop with this disease, keep them in the back of our minds, and do what we can to try to prevent them. We need to keep a positive attitude at the same time, while educating others about the disease.


(courtcap8) #26

Jonathan,

I did not take Michael's comment incorrectly. I would think that most of us ADULT T1 diabetics know what the complications are that we could come into in the future, but dwelling on it and thinking we are lucky for each day that we survive is not going to HELP us live Long lives !! It is going to hurt our chances. I don't know about you, but I know that I would much rather believe and strive towards keeping myself as healthy as I possibly can than to think of this disease as an inevitable death sentence. I have a daughter and a wonderful husband that I want to live a long and well life with !!

Saying that not dwelling on what can happen in the future for us is going to slow down the research for a cure is REDICULOUS !! Us as well as medical professionals know what kind of problems this disease can cause and that frankly it is and can be a lethal disease so they are still going to research regardless of how we personally think on a daily basis. I am NOT giving up without a fight !! And if that makes me naive or an idiot for not wanting to dwell on not living a long life or getting horrible complication regardless of how hard I try than so be it ! I know for a fact that it is proven that with good controll you can offset and even prevent many if not all of the complications associated with this disease !!

The one thing that I do agree with is that it is important to keep a POSITIVE attitude and to educate others as well as fundraise for research in order to get a cure for this disease !! I hope that everyone on here is at least fighting to live a long and happy life without complications !! It is something that is DEFINITELY NOT impossible for a T1 diabetic regardless of what the nay sayers say !!

-Courtney :)


(MissVampyr) #27

Hi, Hi,

OMG, I am not alone I am SOOOOOOOOOOO glad about that one. My cardiologist as well as other drs. have refered to me as a brittle diabetic. I still really don't have a clear clue exactly what that means but I do experience the very high highs. I have to take a ton of other meds for various medical issues does anyone else deal with those issues? I don't have any friends who have diabetes so this group is such a great place cause I can come here to ask questions and also to learn. I just want to thank all of you, your a great bunch of people.


(ChelseaRuth) #28

I have heard the term "brittle diabetic" before and have wanted to learn more about it for a while because my endo has referred to me as one before. I have horrrrrible time controling my BG. It will do what I have seen a few other people have problems with. It will spike up past 400 and 500 and then less than a few hours later, bottom out to as low as 35-40. :( I feel terrible but I'm trying my best to get my A1C down at least a few points. 

Was 11 last time i went, I think. Aiming for 9 next visit. :)


(Maikuru) #29

    I am sorry that my comment made you feel that way (Courtney/ Anyone else) as it was not my intent when I wrote it.  I was merely emphasing the point that we need to focus on finding a cure while at the same time being more realistic about taking care of ourselves for the long haul in this life should a cure not be found in our current lifetime.  If you notice in my last paragraph in the comment i did say that keeping a positive mental attitude was key for dealing with our struggle with diabetes.

    For me even after almost 23 years it is still i have diabetes and not diabetes has me.  I think the most important thing here is to realize that the best way to focus on this is to acknowledge what we have ( the whole truth not just parts we like to hear or that will makes us feel better) and also realize that we have the power to not allow it to define who we are. I am certainly not on death row but at least I am aware enough of my own body that I can plan and prepare better for my future while living my life according to my terms and not the terms of my diesease.

    I am not sure if you will understand that kind of thinking and philosophy but at least know this. 1. Diabetes is not a death sentence. Last i checked no one was immortal and we all die at some time. 2. Despite my seemingly harsh and blunt terminology about complications I am not a negative person. I just prefer a realistic approach when dealing with my health rather then a soft touch or not having all the facts. That can be very dangerous. 3. Insulin is an effective treatment of the symtoms and conditions of Diabetes but it is not what motivates me to keep fighting. Having survived a diabetic coma and a number of other close calls in my short twenty eight years of existence i know it is my will/ choice that drives my motivations. Certainly not a bottle of fluid and a needle that determines my destiny or fate and i would hope the same for everyone else. 4. In life you will stumble, you will fall, and you will get knocked down but what really matters is knowing you can get back up and making that choice. 

    I hope that clarifies any misunderstandings that occured and again I apologize for any offense I may have caused. Facts can be upseting but I believe how we choose to learn, grow and deal with that kind of information is ultimately what really defines us as human beings.  But then again that is getting into a discussion about hard determinism in philosophy so I will leave it at that.  Best wishes and Intentions


(Mollyanne) #30

I have that same problem, where I will be high, then take a correction and get really low, then eat something and get high again then end going back to a good blood sugar but feeling low because I was so high before. That REALLY sucks because you just feel awful. It's a real rollercoaster and it makes me so mad that I can't get it right. Sometimes I want to punch diabetes!


(Megan519) #31

I never thought about the term brittle as negative, I'm glad I don't use the term regularly because I would never want to offend anyone. I always interpreted it as someone who is really sensitive to insulin/sugar and has a hard time finding a balance, not because they are lazy and not trying or anything like that, but because that is just the way their bodies are, they have to be much more careful about what they do to not have crazy swings.


(LookOutSunshine) #32

My half sister was considered to be a "brittle" type 1 diabetic. she was diagnosed when she was 7 and had pretty bad control up into her mid '20's unfortunately she died from health complications when i was 10. Because of my familes relationship with her mother we never really found out the reason for her passing, but i suspect it was related to diabetes. I was younger and we werent very close, but i definately remeber her having very bad control, as well as phycological issues related to her diabetes. She was hospitalised all the time for lows and highs, many times it was her manupulating her blood sugars on purpose.

 I definately think there is a mental component, they cant call you "brittle" just because you have had uncontrolled blood sugars for a number of years.


(Paula) #33

Hi Maikuru - Paula here. I’m 70 yrs old and was diagnosed with T1D in 1959 at the age of 11. So I’ve had it for 59 yrs now. I have always had an extreme sensitivity to insulin and was called “brittle” from the start. I, too, dislike that label. If there is anyone out there who has had Type 1 since the 1950’s or 60’s, I would love to hear from you. Juvenile Diabetes was quite a different animal than it is today. e.g. no diet drinks or foods, no artificial sweeteners, glass syringes with screw-on steel needles. no home blood testing, no pumps, no refined fast-acting insulin, and the list goes on & on… Anyway I would like to get in touch with some other T1Ds that I can exchange war-stories with. I would also like to engage in a face-to-face support group with other T1Ds. If anyone can point me in the right direction for this - please let me know, Ok?
Thanks so much, everyone! Love & Light, Paula


(Dennis J. Dacey, PwD) #34

Hi Paula @Sugarlamb, thanks for your posting, and Welcome to TypeOneNation. This is the first time I’ve seen you post.

We are of similar age and diabetes duration - I celebrated my 16th birthday - July 4th - too weak to get out of bed and received “MY diabetes” diagnosis. Years ago I too was given the “brittle” diagnosis while in hospital under strict observation when doctors saw my BG drop from 368 to less than forty without taking insulin and inbetween testing having had a big dinner. Yeah, we could exchange war stories.

I’m in the Bradenton Florida area - south of Tampa and north of Sarasota. Every month I meet with a JDRF coffee group called “Cups of Hope” - a great mix of people including newly diagnosed and others living with diabetes longer than I. The Tamps JDRF Chapter lists more than a dozen activities every month in its newsletter. You can find a Chapter convenient for you by clicking on “Near You” top center of the main JDRF web-page [jdrf,org].


(Alexandra) #35

Hello All,

I am also a very sensitive Type 1 Diabetic. Every little thing affects me and my doctor and I am always tweaking my basal rates. I work very hard to control my glucose levels and usually have an a1c of 7. I consistently check my blood sugar even with wearing the cgm, make corrections when needed, exercise, and eat right most of the time. Anything that disrupts my routine throws off my blood sugar levels. Because I am sensitive, I also get sick easily. It’s hard work but in the end my control is pretty good. It is nice to know that there are others like me.


(Cathy) #36

I’ve been T1D since 1981, which for me is 38 yrs. I have always had Brittle diabetes, used to hate that term, but it does describe the waves the BS’s go from 40-400 and after the first few years I stopped getting any symptoms. I now use the Dexcom G6 (as of this week), but it only catches it as it is hitting 300 and before it gets to 45. Only day 3 of using it though so we’ll see how this works out. Wonderful not having to do 10+ blood sugars a day - yeah!
Do you remember those air guns for putting the insulin in - I had one of those. And before the blood sugar machines came out, peeing on the stick to see if you were ok?


(jdsnyc1421) #37

‘Brittle’ is just an umbrella term. These umbrella terms exist until there is better understanding of the many facets involved. My example; I was labeled by my Dr. as brittle because of my fluctuating levels. These fluctuating levels were finally better understood with the more specific understanding of my particualar complication; gastroparesis:
(a condition in which your stomach cannot empty itself
of food in a normal fashion. It can be caused by damage to the vagus
nerve, which regulates the digestive system.)

Because of my lack of control in my earlier years with T1D, my nervous system was affected, and my rate of digestion is now inconsistent, causing my blood sugar levels to vary regardless of consistent patterns of dose/lifestyle/food intake. This understanding hasn’t alleviated my issue, but helps me better not ‘beat myself up’ when my dosing/outcomes don’t reconcile.

I don’t want to bore with my specific example, and my example is very different from others who are ‘out of control’ and referred to as ‘brittle’.
I just want to suggest that we not wrap our selves up in this term; it is just medical scapegoat based on lack of understanding.

john