30 Things About My Invisible Illness You May Not Know

On his blog, Marcus Grimm responded to this list, and I thought it would be a good way for me to start blogging again, too.


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: 1974

3. But I had symptoms since: Not sure.

4. The biggest adjustment I’ve had to make is: Thinking about my blood sugar all of the time.

5. Most people assume: that "managing the disease" is like having a cure. Insulin is a killer, too. It's bad medicine.

6. The hardest part about mornings are: waking up with a blood sugar that's way off, too high or too low. There's the frustration of trying to figure out what went wrong, but it also can throw your whole schedule off. A high blood sugar will mean that I shouldn't eat breakfast for a while. A low blood sugar will mean that I'll want to eat something right away, even if I was planning a workout.

7. My favorite medical TV show is: an odd thing to ask. I'm not really into medical TV shows. Scrubs was funny. Is it still on?

8. A gadget I couldn’t live without is: There are different meanings to that phrase "couldn't live without." In the context of chronic diseases, you could take it literally. There's no "gadget" that I couldn't literally live without. Type 1 diabetics were able to survive with regular insulin and glass syringes.
But there are several pieces of technology which will help me live a longer, healthier life, my pump, my CGM, my meter and test strips.

9. The hardest part about nights is: trying to feel safe going to sleep, trying to be sure that your basal and bolusing has been well matched to your activity and food and your blood sugar won't go high or low while you're not awake.

10. Each day I take lots of vitamins, and insulin.

11. Regarding alternative treatments I: don't have any.

12. If I had to choose between an invisible illness or visible I would choose: depending on how the illness was visible. If it wasn't obnoxious, I'd like people to see the illness.

13. Regarding working and career: most of the time diabetes doesn't matter, but it sucks when it does interfere.

14. People would be surprised to know: how often I'm thinking about my blood sugar.

15. The hardest thing to accept about my new reality has been: (not a new reality) I have to keep explaining it to people.

16. Something I never thought I could do with my illness that I did was: run marathons.

17. The commercials about my illness: are not aimed at my demographic.

18. Something I really miss doing since I was diagnosed is: not thinking about diabetes, not trying to think like a pancreas.

19. It was really hard to have to give up: orange juice, except as a treatment for lows.

20. A new hobby I have taken up since my diagnosis is: crossword puzzles. Seriously, I only started doing crossword puzzles to kill time for the couple of weeks in the hospital after my diagnosis. I'm still at it, 35 years later.

21. If I could have one day of feeling normal again I would: just relax and eat like there was no tomorrow, burgers and fries, steak, Boston cream pie, cheese cake, ...

22. My illness has taught me: I can deal with hardships.

23. Want to know a secret? One thing people say that gets under my skin is: "I couldn't do that." There was also one guy that said, "Yeah, but you just check your blood and take your shots and you're fine, right?" Most people aren't that ignorant.

24. But I love it when people: contribute to my cause.

25. My favorite motto, scripture, quote that gets me through tough times is:
"Nothing you can know that isn't known.
Nothing you can see that isn't shown.
Nowhere you can be that isn't where you're meant to be.
It's easy.
All you need is love."

26. When someone is diagnosed I’d like to tell them: Don't believe a cure is just around the corner. They've been saying that for decades. Do whatever you can now to keep yourself healthy in spite of the disease.

27. Something that has surprised me about living with an illness is: I have an extended family of diabetics out there, going through a lot of the same things I'm going through. They're my brothers and sisters of the needle.

28. The nicest thing someone did for me when I wasn’t feeling well was: take me to a doctor.

29. I’m involved with Invisible Illness Week because: I had a dry spell in my blogging.

30. The fact that you read this list makes me feel: Did you read all the way through this? Wow! Thanks! I'm grateful.

Hearts Go Out

More running poetry.

hearts go out
Written 9/26/01
by Jerry "Geronimo" Nairn

I'm like everyone else, but
I'm told my
heart
beats
slow
because I run.
I go out to run before dawn
just to feel my blood flowing
my legs flowing
my body
the sweat
and the beneficial side effects like a
slow
strong
heart
beat
and seeing the sun rise through the mist of a grey September morning
before I wash the sweat from my body in the shower
before I step out and my wife tells me
in very plain, simple words
that something that could
not
happen
has happened.
"...and now both towers have crumbled to the ground."
I run
for the beneficial side effects
like seeing the sun rise through the mist of a grey September morning
before I know thousands of beating hearts were suddenly
crushed into stillness
before, like millions of others
my heart stops
my heart breaks
my heart goes out

Uncle Bernard and Aunt Gertrude

I'm thinking again about how lucky I am to be living now. One thing that makes this very clear is hearing about my relatives who had diabetes. Apparently type 1 diabetes skipped a generation on my mother's side of the family. Mom had two brothers and three sisters, none with type 1 diabetes, but her mother, my grandmother had two type 1 siblings.
Dude, as they called my Grand Aunt Gertrude, married young, and at the age of 19, was pregnant and diabetic. A specialist put her on insulin, but her own doctor didn't think insulin was safe. So she and her baby died.
Grand Uncle Bernard, six years older than Gertrude, was also diagnosed with diabetes, and stayed on insulin. He was a farmer and worked hard his whole life. When I was diagnosed, I was told of his vigorous health in spite of diabetes. It was only recently I heard that he didn't live to reach 40.
I never met either of my type 1 relatives, but I find their stories interesting, and I think there are lessons I can learn from them. Maybe the most important thing to be learned is that I should be grateful for the medical treatment available to me, and make the best possible use of it.