Wednesday, July 31, 2013

So. Is It Worth It?

My one major message as an advocate for Type One Diabetes is that it is a personal disease. None of us are similar. None of us have the same struggles day in and day out, none of us can treat the struggles we encounter the same way.

I just want a little recognition outside of the diabetes world (and uh...sometimes inside too) that while this chronic illness comes with similar symptoms it is not a similar disease when we go from individual to individual.

I wanted to make that clear before I go on with this post because it's a doozy, and what I do (and expect from me) is probably completely different than what you, your mom, your kids, your sister, your cat does and that's ok. It talks about balancing mental health, a personal life and diabetes all while maintaining a cool outer shell.

I don't judge anyone for any of their own choices when it comes to their diabetes, and I wouldn't ever judge anyone because of a number they chose (or choose not) to share.

Ok. We clear on that? Good? Good.

I met my new/old doctor today. I had my lady check up, my 3 month blood work, and a fascinating conversation with her. She is truly one of the most fabulous people I have ever met and if anyone is meant to be a caregiver and doctor it's her.

I sat in the room waiting nervously with my list of questions/medications in hand. She breezed  in with her cool red haired bob bouncing and apologizing profusely as she hadn't had her coffee yet and she was running behind (um it was still 3 minutes before my appt. time.)

She looked me over thoughtfully and said "I don't remember your face, but don't be offended, talk to me like we're old friends and it will come back to me. Tell me your story."

So I explained that I had moved around and bounced from family doc to family doc over the past 7 years since I have seen her. She nodded and asked me questions here and there about my life. Spouse, interests, job, family history etc. Then we got to the good stuff. She looked at my blood work and she said "well, everything is great." and rhymed off cholesterol, etc. And she got to the A1C of 6.1 as soon as she said it I looked at the paper for confirmation and I whooped right there. A deep sigh of relief post whoop made me realize...I hadn't told her I was Type One. She didn't know (or remember). I looked at her and said "That's pretty good for 23 years on Insulin, yeah?" And she smiled big and said "well you didn't tell me you had diabetes, and judging by this I wouldn't have really known."

We chatted more about the pump, the Dexcom, and other treatments. I explained my woes with my endo, and she referred me immediately to her friend who is an endo and said she will see me in 3 months.

I respect people who don't post their A1Cs. I respect people who do. It's a totally personal choice and how you get to those numbers is your personal adventure. I blog about mine because it helps motivate me.

So I posted my results on my Facebook. Most of my Facebook people are friends or people with diabetes in their lives.

One friend (a fabulous d-mom, you probably know her as Lea) asked me: "Is it worth it?"

My answer? Yes and no.

It's hard work. And it's not even to say that people who have higher A1C's are not putting in just as much, possibly more (though from how I feel...maybe not) work into their treatments and self-care. It's just this whole taking care of yourself thing while living with a chronic illness is hard. It's hard mentally, physically, emotionally. It's hard on your job, your relationships. It's hard on your wallet.

It's hard.

What have I changed? How did it happen for me? Over the past 1.5 years here are the changes I have made, all thanks to members of the diabetes online community. (I have not been to an Endo or CDE since I started my new pump in April 2012....so uh don't do what I did. Get a doctor's advice.)

-I don't eat if my blood sugar is above 8.0 (144) anymore.
-I cut my food intake in mornings in half (no more nice big brunches or breakfasts.).
-I noticed foods that set my sugars off and have stopped consuming them.
-I check my blood sugar ~8-10x a day.
-I am extremely aggressive with corrections, temp basals etc.
-I bolus 1hr before breakfast no matter what my blood sugar is. AND I eat the exact same breakfast every single day.
-I started wearing a CGM, and adjusting my basal rates aggressively to match the patterns. Almost Obsessively (I currently have 9 basal settings which work GREAT.)
-I read and took heed to the book Pumping Insulin (changed my whole outlook!)

I have made some sacrifices in my personal life too.
-I don't get to sample as many yummy cocktails as I would like & beers are getting fewer
-My coffee is getting darker (as in not using as much creamer, despite my love for it)
-My mornings are getting earlier so I can get ahead of the hormonal spike
-My eating at restaurants is well planned, and I try to avoid the fried stuff unless I am 100% emotionally prepared for the BG spike BEFORE ordering.
-Driving anywhere takes longer because I will not put the keys in the ignition unless I have checked in range in the past 30-40 mins.
-My social media is annoyingly filled with information about diabetes, mostly on a selfish basis as it motivates me. I think this has caused some of my friends to distance themselves from me. Really, I do. And that hurts.

So is it worth it?


Doctors, family, friends, researchers tell me a resounding YES. Some days are worth all of it. Every grape-counting, pasta-measuring, cheese and olives instead of ice cream for dessert eating moment.

Some days I curse it and just don't want to care and it's a resounding NO. For a day, an hour...even for a minute I don't want diabetes in my mind. But I don't have that option. We don't have that option. So we do what we can when we can and that is how it is.

11 comments:

  1. Congrats with your achievement! Each day it takes work and discipline! Thanks for the inspiration!

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  2. Whoop! I should make a list like that. Right now, my list wouldn't even be half that long. Congrats, and I'm glad you got connected with your new/old doctor.

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  3. Congrats on your A1C! I bought that book a couple of years ago but have yet to read it. I think it's time I took the time.

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  4. Great post! Nice job on all your hard work. I've never thought of my A1C in the same train of though as 'is it worth it'. But I do use my A1C as a judge for how I am doing, which in turn reflects how I'm taking care of myself, which is totally worth it.

    Love the bullet about being mentally prepared for the BG spike. I'm starting to learn this, and that's exactly how I have to think. I know I can bring down a spike, but I have to decide if it's worth that time period of frustration, impatience and possible guilt.

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  5. I'm curious to hear what you do if it's meal time and you're above 8.0? Do you bolus and wait until your CGM gets below that or do you just do a correction and skip the meal all together? What's your breakfast menu? Mine is 1/2 english muffin w/peanut butter and turkey sausage. Every. Frickin'. Day.

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    1. Well, I correct and wait and re-test or what for a downward arrow. If I am actually "high" I do skip a meal here and there and have some protein later as I level out.

      MY breakfast is incredibly boring: One slice of toast, natural peanut butter, almost black coffee. That's it. And it takes a carb ratio of 1:3 with an hour advance bolus to get it that way :/ I hate breakfast! Tell me more about turkey sausage!

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    2. We are eating practically the same thing. If I do 1/2 EM w/pb I bolus for 15 carbs (I'm 1:5) and wait 20 minutes. The turkey sausage has 1 carb in it, which I just include in my estimation of the 15. Here's a link to what I buy. Not sure if it's in Canada. Jimmy Dean brand...comes in links or patties. I buy 3-4 pacakages at a time and just freeze until I'm ready for the next box. http://jimmydean.com/products/fully-cooked-sausage/fully-cooked-turkey-sausage-links#nutritional_info

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    3. I would end up bolusing for fat and protein in the Jimmy Dean. I usually do a 1:25 ratio for fat and protein, so I would take just under an extra unit for the extra piece.

      Those look delicious.

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  6. Alanna, you are a rock star. Thank you for putting so much of yourself out there. :-)

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  7. Wow congratulations! Seriously, I'm so happy for you and glad that your hard work and efforts are paying off. It's inspiring!

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  8. Wow Alanna, you sure are working hard at it (and doing a good job, too!). I've tried delaying meals if my BG is high going into it; sometimes I bolus and wait, sometimes I superbolus and eat. But it's never the same treatment every time. And giving up fried foods? I've tried that about 100 times. It lasts about a week (that must be what quitting smoking is like!)

    I hear you on the social-media thing. It's part of the reason I keep diabetes pretty much separate from my Facebook account. My FB friends are (mostly) only IRL friends, and many don't really care to hear me preach. Facebook is an escape for me. The DOC is a comfort-zone. There's a difference, and I need both at different times.

    But seriously, great job! You know what you want to do and you're doing it; and seeing the results. That's awesome.

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