I agree with you Terry on the attitude of a lot of the med'l people. They often seem to have a "one-size-fits all" approach, and assume that all people with D don't take good care of themselves. I remember one dietitian I had to see in order to "qualify" for my first pump. I had to keep asking her to refer to me as a person with diabetes, not a diabetic (diabetic is an adjective not a noun) and she kept going on and on about me not eating enough and having too low a BMI. I couldn't get a word in as to my occupation (ballet dancer) and it wasn't until I agreed to gain weight, but then she had to agree to be my source for paychecks. I thought, what about other people who aren't as assertive as I was. I realize that the people who are here on TuD are the ones doing well (and maybe in a minority) but enjoy our successes with us - not don't downplay them or try to make each and every one "match". Okay I'll step down from my soapbox now
I don't think there is anything I hate. When it comes to diabetes I have always felt like it was an opportunity to learn and to take responsibility over something. Sure it might require extra time to prepare or extra time to keep track of all of your supplies but if you sit down and think about it all, it can teach you a lot about life. For instance the first thing is that you have to stay positive otherwise it will affect your diabetes care and this will make you feel worse and it will continue as a vicious cycle. Secondly it teaches you to be prepared. There are a lot of things you need to be prepared for in life from making sure you did your homework to studying for a test to making sure you know the directions to a new place. Diabetes can quickly teach you the consequences of not being prepared so it is a great motivator. Finally diabetes is about being ready for anything. You have to learn from your highs and lows just like you learn from a failed interview or along the way to winning something. Take a positive approach to diabetes and think about how you can take care of it better and how it can make your life better.
Iām not a T1D but I am the mother of a T1D. Am I allowed to chime in? I hate everything about diabetes. I hate that I feel guilty for not keeping my son healthy. I hate that I question myself everyday what I could have or should have done differently to protect him from this. I hate the fear of possible complications. I hate the unfairness of it all. I hate the never ending mental and emotional toll it takes. I hate the highs more than the lows. And I hate that no one understands. I pray for a cure everyday for my son and for all of you and would sell my soul to make it happen.
That's what I had to deal with for the last five months after recovering from a foot ulcer. I went through four different insulins within that time frame while recovering and then moving back to New Orleans....and dealing with doctors who can't agree on one thing nor having your medical information (which I believe should be on some sort of network, if there is one already....
The family carb fests are my biggest dislike. Happy Thanksgiving, here are potatoes, gravy, stuffing, corn, sweet potatoes with honey, pineapple juice and marshmallows, plus there is pie ala mode for dessert in 90 minutes after dinner. Christmas is almost the same, heck some dinners are the same (General Tso's Chicken and Rice).
But on the positive side, I can guess the carb content of a lot of food by looking at it. Even if I have never had it before.
That's why I arrive after the dinner for the rest of the party. I know with type 1 I have a lot more freedom than people with type 2: I can dose appropriately. But as someone for whom weight is a job issue, I choose not to go down the path of carb overload - and would rather not know (or have forgotten how yummy those things are). I wouldn't ask people to change their traditional menus just for me. And even before I was Dx'd, they were used to the ballet-girl not joining in. So D has never been an issue.
I'd probably say that #1 on my list would be dealing with doctors and insurance and fighting with them for the support I need. Most are pretty clueless, and the one's with a clue often have a different approach to D than I do. I have a good endo right now, but moving would stink.
With the beach, I live in a beach community and am very hesitant to get a traditional pump for that reason (Omnipod didn't quite work for me either). MDI is a decent option here.
I agree that others don't really get it. I'd be nice to have a spouse with T1 diabetes.
Other problems...
Cost/financials...even with good insurance it is expensive (in the US).
Comfort food...being able to sit down with a container of ice cream or bag of cookies.
Having D in addition to other life problems. It complicates things.
So you do not use any long acting insulin ? I see it impossible to manage your sugars that way unless your on the pump
It doesnāt fit well with what my self image used to be, and what Iād like for it still to be. I like to think of myself as rugged, determined, tough, etc. diabetes makes me feel week, vulnerable, unsure-- thatās what I have a hard time with.
You know how they say āMisery loves company?ā I say one of the things I hate most is knowing how many of us there are out here living with diabetes and carrying around all of this hate that we donāt want (most of us donāt particularly like hating!).
Iām glad for this post and all the responses.
It helped to deflate some of my hates to at least ādislikes.ā
If ever a hate is strong, there is something wonderful about knowing there is a group of people who understand your perspectives and your experiences!
Sending love and support and understanding to each of you!
Knowing that I have it and watching my dad, granddad and cousin go through it....
That it is final and there is no way to get rid of it, just to take care of it. The finality gets to me. Also like they said, that nobody gets it at all and probably never will provided very few exceptions.
Which to me is especially horrid since no matter the type of D, a lot of people blame us. I mean, I have a dear friend with MS and yet no one ever says (or thinks) that she caused it herself. And I have to add, that least with hard work, I can be healthy MS is much more progressively worse than D (in my mind)
Jennifer, I'm pretty sure my folks would shout "ABSOLUTELY!!!" if they read this comment. Having raised me with diabetes, they probably hate it more than I do (and I don't exactly love it).
I hate never feeling completely safe, having my daily activities constantly interrupted by blood sugar ups and downs, and the fact that my sugars are always the WORST when I'm on vacation. Taking time off diabetes would be so much more relaxing than taking time off work!! (Granted, I have a pretty fantastic job... :)
love everyone's feedback on this! I agree so much with you all
I totally can relate to what you wrote:
For me, it's knowing that I have to worry about additional things that a lot of others (my family, friends) don't. I never hear my friends complain about medical bills, insurance, feeling up & down, high, low, etc. I have the same adult responsibilities as they do, plus some and a disease. It's that extra effort on a daily basis, the extra concerns, and the fact nobody else but those of us who have it REALLY get it.
I feel just like that sometimes,and when I think about it for too long or from the "wrong angle", it can really get me down. BUT ironically it is the same strain of thoughts that can feel empowering ā the fact that you have the same problems and every day things to concern yourself with PLUS the diabetes management, can give a feeling of pride and strength. "Look at what I am managing to do every single day.. Look at my discipline, my knowledge, my abilities, my empathy for others who are facing a challenge!" It might sound vain in a way, but I think it is important to remind oneself if it anyway. Having a chronic illness or any illness at all and dealing with it is nothing to be ashamed of, quite the opposite.
That the quality of care depends on $. I would love to be able to pump and use a CGM, but I cannot afford it. When I go to local meet ups and everybody takes out their pumps, I silently drool with envy.
Kathy - I feel sad when I read stories like yours. Of course, I've always known about the disparity of access to health care but when a specific person writes about how it affects them, it bothers me. I've always had good health care and have been able to pump and use a CGM because I had good health insurance. That seems so unfair to me!
TuD has a policy that doesn't allow us as members to help each other out. I know their rationale but I still don't agree with it. Many pumpers, for example, with good insurance get a new pump as soon as the old goes out of warranty. The old pump still has a decent amount of service left in it. Why can't people like you benefit from this inefficiency?
I guess your challenge is to live with this social inequity and still thrive. I've read about many here using MDI who do very well. In fact some prefer MDI over pumps. I wish you a happy and healthy 2014!
i agree with probably all but i hate the fact that i turn into incredible hulk (not literally as greens not my colour) after attempting a fly mars bar, high sugar = bad temper :(, also the ignorance of my colleagues as they after 10 years not decided to gain little info in my wonderful disease , iv had several hypos at work not collapsed just the loopy stage lol but you would expect them to learn instead of the usual "oh u wanna go sit down" . oh yeah sitting downs gonna work lol radges. another thing if i make simple mistake they be like "are you hypo?" yes i work with idiots lol