This week is National Chronic Invisible Illness week and some friends of mine around the DOC, (Diabetes Online Community,) have been completing this meme. Below is my 30.
1. The illness we live with is: Type 1 Diabetes.
2. My boys were diagnosed with it in the year: 1998, 2006, 2007
3. But they had symptoms since: J had symptoms up to 2 months before, L and B were diagnosed the day we saw a hint of a symptom.
4. The biggest adjustment I’ve had to make is: Living with the worry. Living with another cog in my brain that is set to "diabetes" and is never shut off.
5. Most people assume: Most people who don't know me assume that I'm probably a nervous wreck all the time, but honestly I'm pretty normal and laid back. Unless I need to fight for something, then I am a mama bear for sure.
6. The hardest part about mornings are: Not asking my boys to check their sugar before they even get out of bed. I've read this was a pet peeve of some PWD's, so now I try to just check it for them, either before they wake, or before they get out of bed.
7. My favorite medical TV show is: I used to watch Grey's Anatomy. Now I'm pretty much over it.
8. A gadget I couldn’t live without is: The meter. If those things could only be found dipped in gold and cost a thousand dollars they would be worth it. (Interestingly enough, I have the same philosophy for baby swings.)
9. The hardest part about nights are: Getting to sleep. I do some of my best worrying at night. Unfortunately.
10. Each day I take ___ pills & ___ vitamins: Nope. I don't take any. They don't take any. We stick to insulin.
11. Regarding alternative treatments I: am not a happy camper when I get spam emails from people who tout things as a cure. There is no cure for type 1 diabetes. Your special drink/diet/root won't fix my boys Pancreases.
12. If I had to choose between an invisible illness or visible I would choose: If we HAD to choose between the two, invisible is my illness of choice I suppose. My boys can go out in the world and hide diabetes if they feel inclined. And I have a feeling, there will be many days they will feel inclined.
13. Regarding working and career: I am lucky that I can spend my "career" taking care of my boys. If we depended on my income to live and pay the mortgage, we wouldn't have a house and a mortgage. There just aren't daycare providers willing to care for children with T1. And if I did find one, they would in all probability take so much of my income the job would be moot in the first place. But I have found that I LOVE to write. So who knows what my future holds.
14. People would be surprised to know: That we don't have a school nurse. All my boys have checked their own sugars since kindergarten and then called me from school for carb counts.
15. The hardest thing to accept about my new reality has been: That worry is like acid, and it usually makes things worse before you can begin healing. I need to stuff the worry and let my kids just be kids sometimes.
16. Something I never thought I could do with this illness that I did was: Send my son to scout camp/school camp/trips to family without me. But I did! They did! We did it!
17. The commercials about their illness: Are usually geared towards 70 year old type 2 diabetics.
18. Something I really miss doing since they were diagnosed is: Leaving the house on a whim and not worrying about grabbing life saving supplies.
19. It was really hard to have to give up: It wasn't hard to give anything up. I would give up the world for my boys.
20. A new hobby I have taken up since their diagnosis is: Blogging baby!! BEST. HOBBY. EVAH!
21. If I could have one day of feeling normal again I would: Send my boys to school, and then go shopping while leaving my cell phone at home.
22. My boys illness has taught me: That life gives us trials to help us grow into better, stronger more empathetic human beings.
23. Want to know a secret? One thing people say that gets under my skin is: They know someone who has diabetes...and that someone is their grandmother who takes 1 pill a day and checks her sugar every wed. morning. (not that there is anything wrong with that...my father in law does the same thing...it's just that they are thinking that our life is the same...when in fact, our life is the complete opposite of that.) Even just the fact that they are trying to relate is wonderful, but what usually bothers me is they don't want to hear that they are not the same thing.
24. But I love it when people: Ask questions! OHHH! It gives me goose bumps! It feels so good to have someone really want to know, rather than me flinging information at their glossy eyes.
25. My favorite motto, scripture, quote that gets me through tough times is: "Peace I leave with you, peace I give unto you: not as the world giveth, give I unto you. Let not your heart be troubled, neither let it be afraid." ~John 14:27
26. When someone is diagnosed I’d like to tell them: You have been asked to run a marathon you haven't trained for. Some days the course will feel easier, and some days, no matter how seasoned you are, the mountains make for a rough run. The trick is to enjoy the scenery on the way.
27. Something that has surprised me about living with an illness is: How resilient my boys are. Man, they can endure so much more than I would have ever given them credit for.
28. The nicest thing someone did for me when I wasn’t feeling well was: Bring me cookies, 'cuz I am a sucker for cookies!
29. I’m involved with Invisible Illness Week because: Kerri did it, Abby did it, Reyna did it and now I am doing it. I really really think you should do it too!
30. The fact that you read this list makes me feel: Like I am not alone. Thank you for that.
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LLLLOOOOVVVVVEEEEE IIITTT!!!!! Thanks
ReplyDeleteLove 'em all and #19 is my favorite.
ReplyDeleteLove it Meri! Love your quote too, I'll have to copy that one down. Just started working on mine, I hope others join in!
ReplyDeleteI have read a few of these and #18 seems to stand out the most to me I have only been diagnosed for 7 months now and the thing I want most in the world would be to wake up from this nightmare and have God say JK here's your life back, but that's not happening.
ReplyDeleteLove your blog btw
I just posted my own answers to this meme, and I stole your answer about the tv commercials. :) I gave you proper credit, of course.
ReplyDeleteI totally agree about the "I know someone who has diabetes and does this blah blah blah". So frustrating when they think they know all about our world because they know sketchy details about someone with Type II. Argh!
Love all 30 things! What a fun idea!!
ReplyDeleteWell, I have to say that I learned that I should not be focusing on Joe's BG right when he wakes. Thank you for that. It seems like a "DUH" moment. I have been screwing that up.
ReplyDeleteAND...
I am still shocked that you don't have school nurses Meri. You are an inspiratin. Your boys are an inspiration. (((HUGS)))
I'm enjoying hearing about things from the inside minds of the diabetic. I'm not, nor are my kids. My only run in was a chance (and mabye devine, I don't k now) meeting with someone who is now a best friend who has T1 diabetes, and I love her so much I changed how I cook because of her. Also, I have a curious mind so after she gave me Kerri's blog I just keep finding more interesting ones and for some reason it fascinates me... You're pet peeve, that's a good one. I usually relate people to Jess and her pump though, not to type 2.
ReplyDeletei looove your answer to 26! rock on!
ReplyDelete#28 - with carb counts!
ReplyDeleteWe've been lucky with our daycare providers.
Great post!
I really like your page. I personally don't have diabetes, but I know its in my family. Reading these lets me see how others live with it and and how yall make the best of it. Reading your blog helps me see how diabetes affects a person because the people in my family don't often share what they're going through.
ReplyDelete