Invisible Illness Week - Sept. 13-19

Via Karen at Bitter-Sweet Diabetes, I am posting this to raise awareness of Invisible Illness Week. Despite 20 years with the ups and downs of living with bigD, I don't think I've ever considered myself ill - I guess that goes to show just how invisible it is; even to me! But, I have been struggling with my feelings about living with an invisible disease and whether I can come to peace with adding someone to my team who would make type 1 diabetes much more visible, but no better understood, to the rest of the world. I'll post more about that later. In the meantime, it's Meme time:

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Type 1 Diabetes
2. I was diagnosed with it in the year: 1990.
3. But I had symptoms since: at least a few months before my diagnosis. I was working as a nanny on a fishing boat in Alaska; it was a weird enough environment for me to ignore that something was wrong inside me.
4. The biggest adjustment I’ve had to make is: give up any hope of becoming truly spontaneous.
5. Most people assume: re: me, that living with T1 is pretty easy. They have no idea how hard I work to allow them to think that. I wonder if I'm doing myself and them a disservice...
6. The hardest part about mornings are: How that first BG test can affect my whole day, whether I'm going to chase a high or low, need to skip a workout, want to curl up and pretend I have no where to be...
7. My favorite medical TV show is: House
8. A gadget I couldn’t live without is: I think my meter (Wallace) is the one gadget that I truly need to keep me alive and healthy. Insulin is critical and the pump (Gromit) makes that much easier and better, but technically I could go back to MDI (multiple daily injections); I just really don't want to. CGM (continuous glucose monitor, Shaun) has good points and bad; I'm going to keep it around for a while, but probably not forever.
9. The hardest part about nights are: waking every hour or two when my blood sugar is running low or high.
10. Each day I take __ pills & vitamins. (No comments, please) 25-35 units of Humalog. I should really take some vitamins, but somehow I have a really hard time remembering them.
11. Regarding alternative treatments I: am really tired of suggestions that diet & exercise or cinnamon will "reverse" my condition. And ads for "no more fingersticks" are a lie. You still have to bleed, even if you choose less accuracy from another part of your body.
12. If I had to choose between an invisible illness or visible I would choose: invisible - I get to choose who I let in and when.
13. Regarding working and career: my coworkers are getting used to the risk of me testing when they walk into my cube. Most of the time, I deal with my immediate needs and refocus on work. There are days, though, when my blood sugar is off enough to stop me in my tracks for a while and make me want to take a sick day. I have never taken a sick day for bigD, though. I save those for horrid colds, stomach flu, "normal" people sick days. I'm stubborn that way.
14. People would be surprised to know: how scared I am sometimes.
15. The hardest thing to accept about my new reality has been: this reality is so old I don't have an answer to this one.
16. Something I never thought I could do with my illness that I did was: I've never really thought there was anything I wanted to do that bigD would prevent me from doing. It can make just about anything harder, but if I really want to, I'll figure it out.
17. The commercials about my illness: tend not to address me.
18. Something I really miss doing since I was diagnosed is: eating ice cream without a second thought.
19. It was really hard to have to give up: Honestly, I'm not sure. I was diagnosed a week before my sophomore year of college. People told me to take a quarter off, but I refused. Jumping into school's routine didn't leave time to think about it much. I did miss going to the cafeteria without a scale (with which I weighed everything I ate that first year).
20. A new hobby I have taken up since my diagnosis is: riding my bike, which I really took up seriously this summer.
21. If I could have one day of feeling normal again I would: still spend the whole day doing an internal check of whether I feel "right," when & what I ate last, when I took how much insulin... One day is not enough to release these habits.
22. My illness has taught me: Not everything that goes wrong is my fault. (okay, I'm working on learning this in relation to bigD)
23. Want to know a secret? One thing people say that gets under my skin is: "Oh! Do you have it that bad?"
24. But I love it when people: sincerely ask questions about my bigD and listen to my answers.
25. My favorite motto, scripture, quote that gets me through tough times is: "You can't always get what you want, but if you try sometimes, you might just find, you get what you need." - the Rolling Stones. My parents raised me on this; it holds true.
26. When someone is diagnosed I’d like to tell them: don't be too hard on yourself.
27. Something that has surprised me about living with an illness is: my weakest moments look like my strongest to others.
28. The nicest thing someone did for me when I wasn’t feeling well was: tear the plastic of the straw, stick it in the juice box, set a timer for 15 minutes and hold me until I felt better or it was time to test again.
29. I’m involved with Invisible Illness Week because: Karen is.
30. The fact that you read this list makes me feel: supported.

And via Kerri, the Diabetes Meme:

What type of diabetes do you have: Type 1
When were you diagnosed: September 18, 1990. (20 years ago this Saturday!)
What's your current blood sugar: Last test was 188 and rising fast according to CGM (this shortly after a bike ride was cut short by a 55; apparently the pre-ride carbs and glucose tab's finally hit the system).
What kind of meter do you use: One Touch Ping
How many times a day do you test your blood sugar: I seem to be testing 8-10 times/day lately. More if things are wonky or I'm on a long bike ride, less if it's a low-key day and the CGM says things are generally ok and stable.
What's a "high" number for you: Anything over 140 mg/dl.
What's do you consider "low": Anything under 70 mg/dl.
What's your favorite low blood sugar reaction treater: "Toddler" sized grape Juicy Juice (they should sponsor the Pancremaniacs...) for speed. Clif Kids Twisted Fruit Rope (Mixed Berry flavor) for something more sustaining.
Describe your dream endo: mine: open to information I bring in (without the common look askance when the source is a blogger), able to decipher the fog of numbers and, even when there's not a clear pattern, point me in a good direction, aware that "better" numbers aren't the only goal - believes you have to live your life, not just manage your diabetes, in network.
What's your biggest diabetes achievement: getting my A1c below 7% (in 2002). I want to do that again, and keep it down there.
What's your biggest diabetes-related fear: Blindness.
Who's on your support team: T3, the Pancremaniacs, the DOC, my parents, my friends, even my co-workers.
Do you think there will be a cure in your lifetime: I hope so, but I highly doubt it. I think it's even less likely there will be a cure for me. Maybe one for newly diagnosed, but once the honeymoon is over, it might be too late.
What is a "cure" to you: My pancreas works the way it's supposed to and my immune system doesn't try to stop it. No drugs necessary for either of those.
The most annoying thing people say to you about your diabetes is: (see meme above, also...) "My _____ is really brittle." (said in a way that makes it clear someone told them this about their relative, but they don't really know anything about that person's experience living with bigD)
What is the most common misconception about diabetes: All types are the same, and reversible. (I have an image in my head now of a travel skirt you can flip inside out.)
If you could say one thing to your pancreas, what would it be: Tonight: "f. you!" usually, I don't bother talking to it; I consider it a lost cause and have moved on.