Share & Don’t Share – #DBlog Week, Day 1

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This is my first year participating in an awesome thing called #DBlog Week – where a bunch of bloggers from all over write about diabetes using daily prompts for an entire week. You can find out more over at bittersweetdiabetes.com  (and even participate)! I’m so excited to read the other posts and discover more blogs (sorry husband – I’ll be glued to my computer this week).

Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your and/or your loved one’s daily life with diabetes? On the other hand, what do you hope they don’t see?  (Thanks to Melissa Lee of Sweetly Voiced for this topic suggestion.)

{Editor’s Note: I sort-of expanded this to also include what do I want my endo to know about my doctor’s visits. Actually, I just got really gung-ho and started writing about that before going back and re-reading the prompt and realizing I was a bit off. I cannot tell a lie.}

I don’t think my endo knows I blog. I feel a little weird saying “Oh hey and guess what, I’ve been blogging.” It’s a little more relevant than telling her that “Oh hey and guess what, I’ve started driving stick shift,” but it still doesn’t seem to just come up in conversation. I haven’t started learning stick shift, either, but I’d like to (for fun, not for everyday.. as I think it would greatly increase my chances of being involved in an accident.)

BUT, now that my endo is hypothetically reading my blog for one day, and one day only, there are a few things I would like to tell her about my daily life AND what I’d like her to know about the 15 minutes she see’s me every visit (luckily, I really do feel like she ‘gets it’ on some levels – her husband it a type 1).

  • Sometimes, I just need to cry. I’m sorry it has to be in your office when you’ve got six other patients waiting to see you. I know it’s weird that I even cry if my A1C is good, but OH THE PRESSURE of waiting for that stupid, stupid little number.
  • I know you’ll give me a printout of the basic things we might have talked about that day, but I will still write it down. Every. Little. Detail. And I’ll ask questions.  Because, in order to take care of myself, that’s how I have to be. Unfortunately (or maybe fortunately), you don’t live with me – and I’m ultimately responsible for getting this shit right. Or at least trying my hardest to.
  • Tell it to me straight up (now there’s Paula Abdul in my head). I’d like to know all there is to know about a medication I’m starting (or stopping), a blood test I’m taking, a complication I might be facing. I don’t want to have to go home and find scary things on the internet about these things. Then I’ll be e-mailing you for days on end, so it’s easier just to tell me anything and everything I need to know from the beginning.
  • I value your opinion. I really, really do – you went to medical school, and I didn’t. That being said, it’s my diabetes, and it’s different than anyone else’s diabetes. I live with it 24/7/365. So, as long as I’m not doing something like trying to take myself off of insulin, please respect my decisions (if I’m trying to take myself off of insulin, call my mom and get me to the looney bin). If I want to try a new pump or become a vegan, let me try it (actually, my current endo is great about this, but I hear lots of stories).  And no, I’m not vegan. I love cheese, and bacon.
  • I try. Really, really hard. But sometimes I just want to feel normal, and so I let diabetes slide to the way-way-way back burner.
  • I’m scared. Of highs, of lows, of the future. But, I press on, one unit at a time.
  • Having a support system and resources like the diabetes online community (DOC) can do more for me than any doctor’s visit (except they can’t write me a prescription). Please, please, please tell all of your patients about it.
  • Test strips have taken over my life, I find them everywhere,  like on my husband’s back.
  • Insulin does not work well as a perfume.
  • There is a tremendous amount of guilt that surrounds this disease.
  • I worry. A lot.
  • Life is still so, so sweet.

What do I hope that my endo doesn’t see about my everyday life? Well.. this doesn’t apply nowadays, but back when I was first diagnosed, I would have been mortified if my endo had ever seen me making up every single sugar on my handwritten logs (using different colored pens and all).

I think that in the end, I’d be happy to share most everything else with my endo – because I hope that it could only help them to understand what it’s like to live with diabetes, hopefully resulting in more effective treatment for myself and others.

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