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Diagnosis a year ago, mostly new to forum.

Discussion in 'Introductions' started by Mama Salty, May 26, 2015.

  1. Mama Salty

    Mama Salty Approved members

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    Jan 28, 2015
    Messages:
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    Hi. So...where to begin... My daughter was diagnosed last year, May 27th. That's quite the tale but I guess I'll save it for "diagnosis stories." She was 7 at the time, 8 now. Our lives had just started to settle down after a long and bitter divorce/custody battle, so the last few years have been kind of rough. I've visited this forum a few times, looking for answers to questions, but I'm new to forums in general. So many acronyms... However, I live in a very remote rural area and there's not really any support to speak of for diabetic kids or their families, so I'm gonna give this online thing a try.

    My daughter has been handling things really well. In January, 2014, I had to literally wrestle her kicking and screaming to let a doc do a finger prick for anemia check. By May 28th, 2014, she was handling finger pokes and insulin injections like a pro. As for me though, I worry. A lot. There's no nurse at her small school and it's been a struggle to educate the staff there. She's with her dad 50% of the time. The bitter custody battle involved me trying (and failing) to convince a court he's not competent to be a full-time parent, and my fears on that count have gone through the roof since the diagnosis, though admittedly nothing terrible has happened yet.

    And to be honest, so far reading through these forums has bummed me out as much as helped me. That is, it has helped me find answers to specific questions, but it seems like it's a forum for people with much better insurance than I have. I read about all these amazing potentially life-saving tools (CGM, blood ketone meters, a refillable insulin pen that tells you when/what the last dose was!) and then learn my poor-people insurance won't cover it. It kind of makes me feel like a failure as a parent. So I'm not sure if it will work for me as a support system, though I imagine it will still be helpful with specific questions...of which I don't have any right now.

    Sorry for this rather bummerific introduction. I guess for now I will mosey over to the diagnosis thread and get all that off my chest.
     
  2. suej

    suej Approved members

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    Jul 17, 2013
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    Welcome to this forum, diabetes is so hard and so we all (I think) would not sign up unless we had this common hardship in our lives. So I am sorry you also live with diabetes. I have found this forum really helpful and supportive, not only the depth of knowledge but also caring for each other. And there is no one size fits all for diabetes management, each child or person finds their way. And many people choose not to pump or do CGM, although I can so understand that not having the choice is hard, but it does not define you as a parent. The first year is so tough and you also had so much else to deal with I think you need to pat yourself on the back and have a cup of tea in the sun for a job well done for helping your daughter, and to be proud of how far she has come. Ben was 9 when he was diagnosed, we had to hold him down for his first injection, after the insulin infusion. Took him months before he could inject himself. Your daughter sounds so brave and I am sure it is your love that has held her safe through this. I also hope that as time passes (and it did for me, slowly) life settles a bit, and I hope that as the advantages of CGM's emerge, it will become more accessible. Hang in there, you are doing your best under difficult circumstances and you are doing a good job.
     
  3. Just Jen

    Just Jen Approved members

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    Jun 9, 2014
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    Hello Mama Salty,

    My daughter was diagnosed just about a week and a half before yours was at the age of 6. My heart goes out to you! It sounds like you are in a tough situation. I don't know that I have any words of wisdom for you, but I wanted to say that I think you are doing an excellent job so far! I know from several friends who are single parents that it's a tough job. Adding T1D on top of that has got to be even harder. I think your daughter will thank you some day for all that you are doing on her behalf. I will pray that you will get hooked up with some local support. I will also pray that you will find a way to attain some of the extra equipment that can be so very helpful. (Check into medical grants - they've helped a friend of mine who has three kids with huge medical needs.) This is a great place to vent, but also to learn tips and strategies that you won't get at the endocrinologists office. Blessings to you.
     
  4. Sarah Maddie's Mom

    Sarah Maddie's Mom Approved members

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    Sep 23, 2007
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    12,521
    Many of us have had to push our insurance companies to get coverage for pumps and cgms, sometimes even for the brand of test strip that we prefer. Don't assume that your coverage is as bad as you think. It may take longer and you may need your daughter's endo to submit and resubmit and appeal, but it isn't hopeless, don't give-up.
     
  5. Mama Salty

    Mama Salty Approved members

    Joined:
    Jan 28, 2015
    Messages:
    17
    Thank you for the support, input, and advice. I meant to get back to this sooner but I also just started a new job (after 9 years of being a SAHM/divorced & unemployed mom) so there's been more adjusting to do. I guess I was feeling extra down for awhile because my daughter's numbers (to my mind) have been all over the place for a few weeks. I feel like I started to get a handle on them the last few days though, so hopefully that will stick for awhile. Her next 3-month check up is at the end of the month and I'll pester the social worker more about getting insurance to cover more things or getting medical grants.
     

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