Last week was Invisible Illness Week, and type 1 diabetes is definitely in that “invisible” category. I’m a day or two late, but so what. The stupid disease doesn’t go away, so I’m contributing anyway, better late than never. While I don’t have diabetes, because my child does, the whole family is affected. Even TG because she frequently has to take the back burner while I or my husband deal with a
diabolic diabetic issue. I stole the list from Kerri at SixUntilMe
1. The illness I live with is: type 1 diabetes
2. I was diagnosed with it in the year: July 2009
3. But I had symptoms since: April? May? 2009. TB was drinking and eating a lot more, but we chalked it up to baseball, making sure to stay hydrated, and a growth spurt. He never did go DKA (for which I am truly grateful) but he still had it way too long before we caught it.
4. The biggest adjustment I’ve had to make is: For me its weighing everything and figuring out how many carbs are in recipes we make at home. Fortunately I’ve found Spark People’s Recipe Calculator that let’s you plug in your ingredients and figures out the carbs per serving. For TB, it’s having to test ALL THE TIME. He doesn’t wear the CGM religiously, and when he does, he doesn’t look at it. All of us have to think ahead a little more than normal. Nothing big, but constant stupid things like making sure he has some smarties on his person when he walks to a friends house, or jogs around the block.
5. Most people assume: That someone else in the family has it too. Well, one of my cousins does, but he was diagnosed as an adult and had leukemia in his 20’s. Leukemia means all bets are off.
6. The hardest part about mornings are: When we have to do a site change before school. I am not a morning person, and he hasn’t been able to screw up the courage to do it himself yet.
7. My favorite medical TV show is: House! He doesn’t have one, he’s only 11 and I’m not letting him watch shows with major illnesses. He’s got one, he doesn’t need to worry about something else he might get. Believe me he will, and that’s an 11pm conversation I don’t want to have.
8. A gadget I couldn’t live without is: CGM and pump. Him? well, his pump (Percival) obviously, but he’d probably say the computer or DS
9. The hardest part about nights are: He’s not awake to feel a low, and doesn’t wake up (yet) when they occur. Couple that with his dislike of the CGM and we’re talking a BG range of 150-200 overnight. Sometimes I feel its a tossup between killing him slowly or killing him quickly. For him, its screwing up the bedtime routine order. He hates brushing his teeth only to then test and find out he needs a snack and has to brush again.
10. Each day I take 1 pill & 2 gummi vitamins. He’s a kid and we have well water, so aside from the insulin 24/7 he gets fluoride
11. Regarding alternative treatments I: Maybe for T2’s, but for T1, I call bullshit. No amount of cinnamon, diet change, cheese, or nightlights are going to make it go away.
12. If I had to choose between an invisible illness or visible I would choose: I don’t know. “You don’t look sick” has to be the four most annoying words on the planet, but on the other hand, it’s up to him when and if he chooses to share his disease.
13. Regarding working and career: I am fortunate that my work, home and his school are so very close (within 5 miles) and my work is so very flexible. I
have to get to go on all his field trips and take him to the endo 4x a year, and have, on occasion, had to go do an emergency site change.
14. People would be surprised to know: that I’m really not as organized as his diabetes makes me.
15. The hardest thing to accept about my new reality has been: that it effects my daughter too. She gets bumped to second class during a BG event, and is always has to wait before meals while we figure out his carbs. She’s jealous and has told me so; we try to minimize the second class citizen thing, but it doesn’t always happen.
16. Something I never thought I could do with my illness that I did was: I have no clue, we haven’t restricted him from anything. Yet.
17. The commercials about my illness:Piss us all off. There’s no differentiation between T1 and T2 and no matter what the old people say, you need a lancet to test, and that hurts.
18. Something I really miss doing since I was diagnosed is: making my own insulin. (Kerri said that, but I’m leaving it)
19. It was really hard to have to give up: my sleep? We’ve never limited him, but he self limits sometimes
20. A new hobby I have taken up since my diagnosis is: Activity! I’ve made him be more active and he even joined the cross country team (and likes it!)
21. If I could have one day of feeling normal again I would: sleep. He would eat things like cinnamon buns, Italian bread and cotton candy until he was sick.
22. My illness has taught me: to be more organized, and he has learned to be more responsible.
23. Want to know a secret? One thing people say that gets under my skin is:Should he be eating that? or He can have some berries, I only put a little sugar on them to make them sweeter. (ARGH! They’re effing berries, they don’t NEED sugar)
24. But I love it when people: check with me before hand to see if there’s anything they need to know before inviting him to something.
25. My favorite motto, scripture, quote that gets me through tough times is: Why do we fall Master Bruce? So we can pick ourselves back up.
26. When someone is diagnosed I’d like to tell them:That it is really really hard at first, but it does get better.
27. Something that has surprised me about living with an illness is: the amount of other kids in my community that have it also
28. The nicest thing someone did for me when I wasn’t feeling well was: when the neighbors coordinated my daughters care while my husband and I were staying at the hospital learning how to be a body part. Seriously, the community stepped up and passed her around for three days, including a sleepover so she didn’t feel scared or neglected. My mother (the kids usual caregiver) was away, and my in-laws were worse than useless.
29. I’m involved with Invisible Illness Week because:my kid’s pancreas is on a permanent vacation
30. The fact that you read this list makes me feel: like someone else gets it.