Invisible Illness Meme - isn't a week really 8 days??

So I guess I'm a day late...I saw the start day as the 12th and apparently I can't do math! But here it is...a day after the fact...right - o!

1. The illness I live with is: Type 1 Diabetes

2. I was diagnosed with it in the year: 1991

3. But I had symptoms since: maybe 9 months? I was in the third grade when diagnosed but I swear I had a low blood sugar at the end of second grade.

4. The biggest adjustment I’ve had to make is: admitting I can’t deal with it alone.

5. Most people assume: that I have it all figured out and under control...I put up a good front.

6. The hardest part about mornings are: convincing myself to test, and then actually eating a good breakfast. I am not a big morning eater.

7. My favorite medical TV show is: House! Love crazy House.

8. A gadget I couldn’t live without is: My cell phone. I can manage without the pump. I don’t LIKE to but I can if I must. However I live off my phone it seems! I track my sugars, carbs, lab tests, plan my week, get driving directions, all from my phone.

9. The hardest part about nights are: Well, I work nights so on the nights I don’t work, the hardest part about the night is being awake at 3 am and wondering, “What can I do? Whats open? If I clean will I wake the rest of the house? Maybe I should just clean quietly…”

10. Each day I take: 5 pills & 1-3 vitamins and one insulin via pump

11. Regarding alternative treatments I: Try to keep an open mind. But for the physical part of diabetes, there are none. For the MENTAL care of diabetes though, alternative and complementary therapies can definitely help.

12. If I had to choose between an invisible illness or visible I would choose: An invisible one. I know many people who have struggled with cancer or MS or ALS and they not only have to deal with the mental, physical, emotional side of their illness but then they have to have it out there for all to see and judge. That I can choose who to share my diabetes with and that people in the grocery store don’t know I have a chronic illness I consider a blessing.

13. Regarding working and career: I’ve been lucky that all my places of employment understood about my diabetes. I had a few snags in corporate America about the “Why” when I have a low I must stop what I’m doing and treat; aside from that though it’s never been an issue. Because of diabetes I feel that is what drew me to health care and why I am pursuing nursing as a career. It is also why my sister is drawn to nutrition and is pursuing dietetics.

14. People would be surprised to know: doing things right doesn’t mean things always go right. I get, “Well didn’t you cover? Well didn’t you eat something?” a lot in response to my wavering blood sugars. Yes. I did. I did the same thing I did the last time my sugar was that way. Today is different. My body’s reaction is different today and aside from trial and error (and prayer that I can figure it out) I have no way of knowing how it will react.

15. The hardest thing to accept about my new reality has been: Well, my reality is almost in its twenties! And the hardest thing? The fear & (loathing?? ;-P ) the constant attentiveness. The fear of losing my limbs or my eyes. The fight of trying and trying and trying to NEVER give up never give in to what’s easy but go with what I know is best for my health. Day after day, year after year? That’s hard to keep doing some times.

16. Something I never thought I could do with my illness that I did was: lemme think about this one….

17. The commercials about my illness: Crack me up. And make me roll my eyes.

18. Something I really miss doing since I was diagnosed is: I miss guilt & insulin free root beer floats.

19. It was really hard to have to give up: Regular root beer floats….see above.

20. A new hobby I have taken up since my diagnosis is: card making, not health related at all but that’s the newest hobby of mine!

21. If I could have one day of feeling normal again I would: Go for a long stroll without snacks, just water. Work out until my muscles hurt not until my sugar runs low. I would also carry a smaller purse that day or not carry one at all!

22. My illness has taught me: to appreciate the ability to be spontaneous, and to realize that with this disease planning is key.

23. Want to know a secret? One thing people say that gets under my skin is: “There is this cord hanging out of your pocket, careful!!”

24. But I love it when people: Respect my struggles and how difficult some days can be on me.

25. My favorite motto, scripture, quote that gets me through tough times is: Goodness I have too many! But I tend to gravitate towards “This too shall pass…” and one I coined myself “Even if today or yesterday sucked, tomorrow is still new and glistening. Waiting…”

26. When someone is diagnosed I’d like to tell them: “You can do this! You are not alone! It is possible to get through and still have a normal, healthy life. Seek support from where you can find it in a healthy way.”

27. Something that has surprised me about living with an illness is: how much more goes through my mind because of it. Like all the different mental steps I run through before I eat or exercise.

28. The nicest thing someone did for me when I wasn’t feeling well was: rub my head (thanks babe!); tell me its going to be okay. Oh and all those flowers I got last June when I had meningitis…that was super nice! (okay that wasn’t diabetes related…)
Diabetes wise, I had this terrible seizure last year and I lost control of my bladder. My significant other treated the low, held me when I cried (I tend to cry after I have a seizure, not sure why, think it’s the loss of my short term memory making me all confused), helped me into the shower, and didn’t give me crap about the loss of bladder control…in his bed. THAT was also very nice.

29. I’m involved with Invisible Illness Week because: Kerri did it, Abby did it. Others did it, and I wanted to try and start blogging again…

30. The fact that you read this list makes me feel: heard. For once.

1 comment:

Scott K. Johnson said...

Hi Amber! Good to hear from you again - I hope all is well.

I liked the one about doing right doesn't always equal getting right. Ain't that the truth!