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30 Things About My Invisible Illness: 2011.

This week is Invisible Illness Week, and type 1 diabetes is definitely in that "invisible" category.  I wanted to participate in this week's events, but a little Birdy and a little eyeball set me back a bit, productivity-wise.  So I'm defaulting to my favorite blog fodder:  a meme

Back in 2009, I did the 30 Things About My Invisible Illness meme, and I'm curious to see how much has changed in the last two years.  Bring out your memes!

1. The illness I live with is: type 1 diabetes
2. I was diagnosed with it in the year:  1986
3. But I had symptoms since: 1985
4. The biggest adjustment I’ve had to make is: ... this is a trick question. I don't remember the "before" diabetes moments in my life, so I've been adjusting my schedule, decisions ... life to diabetes for the last 25 years.
5. Most people assume: that I did something to cause it.  Or that it's "no big deal."  Or that after my pregnancy was over, my diabetes would go away.  Or that I "can't eat that." Or that the insulin pump and the CGM automatically regulate my blood sugars, leaving me sitting by the pool and sipping mango margaritas all day long while my blood sugars roll between 90 - 115 mg/dL.  ( 
6. The hardest part about mornings are: when there isn't time to make coffee.  (What, it's not all diabetes!)
7. My favorite medical TV show is: Glee?
8. A gadget I couldn’t live without is: Toss up between my insulin pump, Dexcom, and Macbook.  Those three things are my best inanimate friends all the livelong day.
9. The hardest part about nights are: being a little anxious that I'll have a blood sugar issue that makes the morning disappear.
10. Each day I take 1 pill & a billion vitamins.  And I infuse insulin 24/7.  (The meme said "no comments" here, but diabetes maintenance drugs are more than worth mentioning.)
11. Regarding alternative treatments I: believe that holistic health and and nurturing the emotional self is just as crucial as daily insulin doses.  But I don't have other alternatives to insulin.  It's kind of the missing link.
12. If I had to choose between an invisible illness or visible I would choose:  While I am sometimes frustrated that PWD (people with diabetes) don't "look worth curing," I would much, much rather feel good and look healthy than to have tangible, outward symptoms of my medical condition.  I appreciate being incognito with my diabetes as much as I can. 
13. Regarding working and career:  I used to just "work."  Now I have a career, and a passion, and I credit that to the influence of my diabetes.  Can't lie.
14. People would be surprised to know: that I don't talk about diabetes all the time to my real life friends.  Actually, I hardly bring it up.
15. The hardest thing to accept about my new reality has been: that I don't remember the "old reality."  I'm a little moody about that, sometimes.
16. Something I never thought I could do with my illness that I did was: have a baby.  (Boo.  Yeah.)
17. The commercials about my illness: are just now starting to resonate for me.  Prior to the new class of commercials that speak to the type 1 community, I just couldn't get into that oatmeal guy from Cocoon.
18. Something I really miss doing since I was diagnosed is: making my own insulin.
19. It was really hard to have to give up: ... hmm.  I don't think I've given anything up because of diabetes.  To the contrary - I think I've worked harder and earned more (emotionally) due to this mess.  :)
20. A new hobby I have taken up since my diagnosis is: caring about my health.
21. If I could have one day of feeling normal again I would: just relax.  And revisit the mango margarita thing.
22. My illness has taught me: that "control" is a state of mind. 
23. Want to know a secret? One thing people say that gets under my skin is: "You can't eat/do/think/be that."  Hey, want to know a secret?  I CAN.
24. But I love it when people: love me for me, and not because of or despite diabetes.
25. My favorite motto, scripture, quote that gets me through tough times is: Don't eat fructose snow?
26. When someone is diagnosed I’d like to tell them: that they aren't alone.  And there is a very good, very full life, even after diagnosis.
27. Something that has surprised me about living with an illness is: that there are a lot of other people who are living with this illness, too.
28. The nicest thing someone did for me when I wasn’t feeling well was: not say, "What did you do?"  As if I caused the whole not-feeling-well moment.
29. I’m involved with Invisible Illness Week because: if we're not involved, our disease remains invisible.
30. The fact that you read this list makes me feel: like you have an appreciation for life with diabetes, and that a small part of your brain is thinking about doing this meme, too.  (DO IT!)


Comments

When I read 18, I pictured you in a lab with a white lab coat on, stirring a cauldron. It was awesome!!! I want you back in a lab brewing your own insulin!!

Awesome! and I am gonna steal this idea for a post today. kthxbai

Kerri,
I love you and everything about you. I have read your blog almost from the beginning and appreciate how you can take my feelings and put them into words.

Here comes the hard part: Can we step back and rethink this Sprinkles the unicorn thing? We (in the DOC) might understand what it represents. But I cringe each time I see it. I cringe because I wonder what those outside our circle might think. PWD have a hard time getting the rest of society to take diabetes seriously, do we really want a unicorn named Sprinkles representing any aspect of our disease?

It's just a thought. Perhaps something to think about?

Brenda - I totally understand what you mean. Sprinkles is a feel-good, silly little excursion. He makes me laugh, and I use him to crack myself up, but he's not everyone's cup of tea. He's also not an "official" anything for anyone. Do what works for you! :)

Oh, one more thing: Diabetes is taken seriously. Everyone talks about the amputated legs and renal failure and all of the really difficult, really heartbreaking aspects of this disease. There's no shortage of seriousness. For me - and this is only for me - I need to be able to smile. Have to laugh. It's as necessary for getting me through the day as insulin is.

Kerri,
I understand your comments and I also use humor to help me cope over the last 37 years. You said he makes you laugh and cracks you up...and he is not an "official" anything for anyone. But Sprinkles is out there in a verey public way with a Facebook page and a twitter account. I'm not worried about the perception in-house, but many outside of the diabetes community already think diabetes is easy-breezy and Sprinkles may have the potential to add to that. Again, my opinion, and worth exactly what you paid for it. But I still think it is something for you to consider.

Brenda - Sprinkles is worth exactly what you paid for him, too. ;)

I'm not sure what you think the best course of action is, but I do not want to write about doom and gloom and the tougher stuff all the time. It depresses others, and it depressed me too, focusing solely on what's difficult about diabetes. I can't do that - it's not in my nature. I care about and try to influence society's perspectives on diabetes (and I accomplish this goal, along with my fellow DOC members), but in the end, I'm most concerned with staying emotionally and physically healthy.

Diabetes is serious, and I can talk about the serious, scary stuff all the time for the rest of my life, but that ruins my quality of life. Feeling depressed affects my health. I enjoy laughter, and feeling good. I don't see anything wrong with that, or your opinion. I'm glad you shared it, and I'm taking it to heart.

I emailed you earlier, and if you'd like to discuss this more at length, email might be easier. Either way, I really appreciate you giving your perspective, and I absolutely hear you.

This fish has a twitter account but it's a fake twitter account. Some things are just for fun.

http://twitter.com/#!/ericasfish

I think there are plenty of things about diabetes that people will cringe about (blood, needles, limb amputation, visual impairment) before they cringe about unicorns.

But, that's me.

I was surprised to learn recently that there's actually a medical term for "someone who doesn't look sick" even though they may have a medical condition. It's "NAD."

I've been type 1 for 21 years and have spent over a year dealing with another medical issue (a frozen joint) that my orthopedist says is likely due in part to diabetes. When I saw a copy of my medical records, they described me as "NAD." That's doctor-speak for "no appreciable disease."

I am totally in the camp of those who would much rather look healthy than have visible, physical signs of an illness, but as the theme of "invisible illness week" conveys, looks can be deceiving.

I love that his name is Sprinkles, because most people think that the things with sprinkles on them (ice cream, cake, ice cream cake, etc...) are things that we CANNOT have, when, in fact, we can :).

Thank you for this great information on 30 Things About My Invisible Illness and your outstanding courage. http://stopdiabetesnow.com

It's wonderful that you can get together with your friends and not talk about diabetes.
I seem to be the topic of discussion with my friends and that erks me. Especially the time when it was brought up about another PWD who suffered the amputation of his toe. As spectators of this condition, they just don't comprehend that for me it's very real and very scary. I think it is their way of telling me to be good. If they only new how hard I work at this. 23 years of work.
It's wonderful to get together with friends to relax and not focus on my T1 diabetes.
Christine

#30...you rock...:)))

LOVE this post Kerri. I have noticed, that now that i am a pumper, it is astonishing to me, how no one knew I had a chronic disease, yet now I find SO MANY people staring at me, or checking out my hips with tubing or pump sticking out. Never realized which is better, invisible, or visible. Also, If we don't laugh at the silly stuff, or at life, with or without diabetes, we are going to live such a sad, depressing life. Not that I

Thanks for posting this - inspired me to post my own on FB.

Love #18. I can totally relate. Thank you for the laugh.

i love what you said about being an advocate in whatever ways you feel comfortable. my kid is participating in the JDRF walkathon kickoff at her school tomorrow (the 6th grade raises money every year for JDRF, how convenient!!). i know her classmates see how she deals with it every day, but i hope this is a positive and informational assembly for them all as well.

ps, love the video too!

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