Comment by ladyrayne67 on February 3, 2011 at 10:02am

The worst..the constant effort to watch what I eat. I don't mind to a point but at the same time those foods are so darned pricey and I feel like a burden at times, as I have to take my testing supplies with me and I have had idiots stare at me...it stinks! Also the cost of insulin and lack of low cost options for the uninsured! This country needs universal health care ! It scares me I almost died from this and that can still die from this...

Comment by Riva Greenberg on February 3, 2011 at 11:05am

Hi Katie, it hurts me to read what you wrote. It hurts me for you and your child. I want to say something helpful but I can't. I can't imagine what it's like to have to hurt your child to help your child. You help remind me that for parents type 1 diabetes comes with an extra special bag of challenges.

Comment by ladyrayne67 on February 3, 2011 at 11:15am

I agree, Katie that has to be so difficult...give him lots of love and kisses!

Comment by Papo on February 3, 2011 at 4:53pm

you can never forget it, this is the worst thing for me. You can play, run, love, sleep ... you can try everything, but you allways think "what effects does it haveon my BG?" You're allways under this sword of Damocles...

Comment by Donna H on February 4, 2011 at 4:18am

The lack if spontaneity, the horrid highs (hate them more than the lows), disconnect with my husband (he does not have diabetes and doesn't understand it), and fear of complications of diabetes.

Comment by ladyrayne67 on February 4, 2011 at 7:41am

@ Donna I so agree with you! It stinks the worry of the complications!

Comment by Brian (bsc) on February 4, 2011 at 12:19pm

Riva, you wrote:
Are there any things regarding your diabetes she is willing to be part of? Are there things outside your healthy regimen you still share? I think the balance is important. Then of course some people will swear their spouses are diabetes wannabees.

So the short answer is yes we share some things about diabetes, but the long answer is complicated. We have both shared changes in diet and she has made efforts to be aware of some things. She has joined me for some doctors appointments and come to support group meetings. But I started insulin in december and told her, yet it was only two weeks ago that she even asked why and cared to listen to the story. And while I suggested she got "gyped" she may still get lucky, she had an A1c last year of 5.8%, prediabetes and is conflicted by that news. And I know she is frustrated by wishing to exercise, but not being successful in making it happen. And you are of course right, there is much more to life than diabetes and we would all wish that we could enjoy all those aspects of life "despite" diabetes.

Comment by Riva Greenberg on February 4, 2011 at 2:39pm

bsc, it's interesting you wrote your wife has pre-diabetes. Maybe it is hard for her to see how well you're doing and have adjusted while she may be facing some big fears about her future. Of course, I have no idea about your relationship, but since it sounds like she's having trouble meeting you where you are maybe you can try to go to where she is. Sometimes a simple questions like, "Tell me what this all feels like for you?" is an opening where you can begin to meet.

Comment by Fashionably Sweet on February 4, 2011 at 3:15pm

The worst thing for me is knowing that it's never going to go away...I'm only 22 years old, and was diagnosed on my seven-month wedding anniversary. For me, that means that not only do my husband and I have to wait until my A1C is under 6.0% before we can start a family (while all of our friends are having babies); I'll probably also have to continue to work full-time after we have kids just so I can have insurance to be able to afford my diabetes care, something that never crossed my mind before. I can deal with all of the inconveniences, discomforts, and annoyances of having diabetes (most of the time, anyway), but it's the major life-altering things that get me the most. The fact that it isn't going to quit or take a break means I can't either. As you said, it's very much like having a second job trying to stay on top of it. It's that level of control and balance we're all trying to achieve...The point at which we can say, "I have diabetes, but diabetes doesn't have me."

Comment by Brian (bsc) on February 4, 2011 at 4:37pm

Did I not say life is complicated? I often felt that being diagnosed with diabetes is a life changing event and that you can go through a grieving process, just like Elizabeth Kubler-Ross describes. The stages are denial, anger, bargaining, depression, acceptance. The first part, sometimes called D'Nial is hard. My wife was not told she had diabetes by her doctor, it is hard for her to accept a diagnosis from me. I need to let her find it on her own way. I do hope she knows that I am here to talk and help.

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