Kortnie at the 2011 JDRF Walk to Cure Diabetes, Tempe Town Lake, Tempe, AZ

Saturday, September 17, 2011

Invisible Illness Week, Our 30

It's invisible illness week, I haven't updated this blog or our personal family blog in quite awhile. I keep meaning to, but then something else comes up. I'm still reading all the other D-Blogs out there though! The past day or two people have been posting their answers to 30 questions in honor of supporting "Invisible Illness Week". Kortnie's Type 1 Diabetes is very much an invisible illness. That's a blessing and sometimes a curse as well. Read on to see what I have to say about it.

1. The Illness I live with is: Type 1 Diabetes, I don't live with it the way Kortnie LIVES with it, but her illness is a family affair. I believe it always will be.

2. She was diagnosed with it: November 7th, 2009, we're fast approaching the 2 year mark, I'm not sure what to feel about that.

3. But she had symptoms since: The best I can figure it when I look back is that she started showing symptoms about 7 months prior to diagnosis. We had gone on a family vacation in March of 2009 to a family wedding, on the way home we had a long 2 day drive, I swear on that first day, she cried for us to stop and let her use the bathroom every 30 minutes and she was so thirsty, I didn't want her to drink any more water because of all the bathroom stops, but she was crying and so thirsty and so tired too. I figured she had a bladder infection from all the swimming or something, I made her drink Cranberry juice and eat some yogurt, when I look back I think she was probably having a bad pre-Diabetes day, something about that trip was the turning point for her slowly dying pancreas.

4. The biggest adjustment I've had to make is: It's hard to name just one thing, I'd like to say everything, but that really isn't an answer. If I have to narrow it down, I'm gonna say, the biggest thing we changed was that I quit my job, Kortnie was in 1/2 day Kindergarten when she was diagnosed, she was sad and scared, she didn't want anyone to give her shots but me, not even her dad. There was no way I was going to be able to send her to a babysitter and have the babysitter literally hold my little girl's life in her hands.

5. Most people assume: That we know what we are doing, they don't realize the thought that I put into everything Kortnie does, what time she eats, what she's eating, what she's going to be doing, is she growing, is she getting sick, will it be cold, will it be hot, is she going to be excited, it goes on and on, Everything she does or doesn't do will ultimatly affect her Blood Sugar somehow.

6. The hardest part about morning is: Getting Kortnie up early enough for her to check her BG, have breakfast and re-check again before leaving for school. Making sure her lunch is packed, her carbs in the lunch are written down properly for the school nurse and making sure she has enough battery life in her gadgets, insulin in her pump and test strips for her meter.

7. My favorite medical TV show is: Um, we don't have TV, but we do have Netflix, I recently watched all of the Grey's Anatomy episodes, I liked them, I used to love ER, but it's been off the air for awhile now.

8. A gadget I couldn't live without is: Kortnie couldn't live without her meter or insulin pump, I suppose she could live without the pump if she was on shots, but her meter, yep she needs that. Me, I couldn't live with out the alarm clock on my cell phone, I'd never be able to sleep if I was afraid I wouldn't remember to get up for a middle of the night check.

9. The hardest part about nights is: Worrying and not sleeping. I check Kortnie's BG at 8pm when she goes to bed, 10:30pm when I go to bed, 2:30am and then again at 5:30 or 6 when I wake up. Some nights it's hard to roll out of bed at 2:30am, especially if I am extra tired or feeling sick myself, my husband pretty much never does the 2:30am check, he sleeps right through the alarm. It makes me a little angry and bitter sometimes, but even if he did get up and do the check for me, I'd still wake up and want to know what her number was, what her IOB (Insulin On Board, the insulin she still has in her system) was, how much insulin did he give or not give. Sometimes it's hard for me to stay up untill 10:30 for that check, my husband does help me with that one quite a bit though, and for that I am grateful.

10. Each day I take _ pills and _ vitamins. Kortnie takes a vitamin C and a multi-vitamin every morning at breakfast

11. Regarding alternative treatments: There are no alternative treatments for Type 1 Diabetes Kortnie's pancreas does not make insulin, you need insulin to live, so she takes insulin. I suppose there are 2 treatments for Type 1, MDI (Multiple Daiy Injections) or Insulin Pumping. They both involve insulin though, Kortnie is an Insulin Pumper, she has a tube inserted into her abdomen every 3 days and the tube is hooked to an insulin pump she recieves insulin every 3 minutes 24/7/365. Before becoming a pumper, she was on MDI and she took 5-7 shots of insulin every day.

People are always telling me about new things that can reduce her insulin dependancy or even cure her Type 1. For the most part these people I know are just trying to be helpful they are under educated in Type 1. I still look into these "helps" even though I know they won't work. Most of the time I try to educate them and tell them why it won't work for us, sometimes I don't. Shame on me, but sometimes I'm just too tired, my brain hurts.

12. If I had to choose between invisible illness or visible I would choose: This is a tough one, how about if I choose NO ILLNESS! I'm glad that Kortnie can do so many things, everything really, and that she doesn't have to look "weird" or whatever. After Kortnie was first diagnosed I took a 3 month LOA from my job at Walmart. I tried to go back to work Part-Time, my first day back they put me at cashier training, I went and covered a lunch break for a door greeter though, quite a few of my friends from work walked up there to talk to me. I was having a bad day and feeling sorry for myself and feeling sorry for my Kortnie, when in walked a mom and her child. Her child was older, maybe pre-teen or teen, and in a wheelchair, severly handicapped, and I thought to myself, "I'm glad that's not me, my situation could be alot worse" I used to think the Lord sent that lady and her kid to my door to help me somehow not feel so sorry for myself, and maybe He did, but I also wonder sometimes, if that lady would look at my situation and think that I am worse off than her. I guess I'm glad that Kortnie's illness is invisible, that way we aren't stared at and judged as much. It's all about perspective....

13. Regarding work and career: I always wanted to be a stay at home wife and mother, I didn't really love my job at Walmart and I wasn't that sad about having to leave it, my family could use the money if I went to work but what I was making there only left me about $50 a month after I paid for gas and babysitting. I might go back to work again after my youngest starts all day school (2 years from now), but we live in rural AZ and I'd want to find a job in Snowflake where we live rather then 20 miles away in Show Low. Even though I expect Kortnie will have more independance by then, she'll be going through puberty soon and I hear that is HELL on Type 1 girls, probably boys too, I'll still feel like I need to be within a couple minutes of her if she needs me.

14. People would be suprised to know That I never feel in control and that most of the time I still don't know what I'm doing. I'm scared all of the time too.

15. The hardest thing to accept about my new reality has been: That we can't really be carefree or spontaneous anymore. We can't just jump in the car and go on an adventure, find a new place to hike or go fishing. We have to think, plan and pack all the stuff that Kortnie needs. Even something as simple as a family bike ride takes thought.

16. The one thing I never thought I could do because of my illness but did do was: Kortnie can do anything she wants to do, except go without her insulin. She tries to avoid shots and site changes and finger pokes though. I'm glad that she can still do anything, but I'm sad that she has to think about it so much, it's like part of her childhood is gone.

17. The commercials about my illness: UGH, there aren't many about Type 1, the Type 2 commercials can be scary though especially for a 5-7 year old, I remember her asking me once if her leg was going to get amputated, what do you tell a little kid? I just told her "No, probably not"

18. Something I really miss doing since I was diagnosed: Telling her to just go find a snack or sleeping all night long.

19. It was really hard to have to give up: Sleep, you know how when you have a new baby and you get up in the middle of the night to feed it and cuddle it and you think it's not that bad most nights because eventually your baby will sleep through the night? Well, just the other week I asked my husband if he thought that when Kortnie was a teenager would I still be doing the middle of the night checks and he said yep, and when she's grown up you'll probably call her at 2am and see what her BG is. Yeah, I think it's going to be another 10-12 years before I can sleep all night long.

20. A new hobby I've developed since diagnosis is: Um, I already had a blog, but I did start this DOC blog. I don't do it very often though, I have been more crafty and thrifty since her diagnosis though, probably because I'm not working.

21. If I could have one day of feeling normal again I would: First I would sleep 8 hours in a row at night, then I would take the kids and go somewhere fun, the lake, Phoenix, I don't know somewhere, and we'd have fun all day and I wouldn't have to think about Diabetes or how that cotton candy is going to make her BG skyrocket or how many juice boxes to pack, and I wouldn't have to stop and tell her to check her Blood Sugar. She hates that when she's having so much fun running around and I have to tell her to stop and poke her finger and eat or poke her finger and bolus.

22. My illness has taught me: Kortnie's illness has taught me that I am stronger than I thought and that all people are stronger than they think and I think it has helped me in my compassion skills as wel.

23. Want to know a secret? One thing that people say that gets under my skin is: "I don't know how you do it!" or "I could never do what you do!" Well, guess what, I don't know how we do it either, but we do and you could too. This is my kid, I will always do whatever it takes to keep her alive, I'll always do whatever it takes to keep all of my kids alive, I knew this before Kortnie was diagnosed of course, it's in the core of any parent.

24. But I love when people: Tell Kortnie how brave she is or how proud of her they are, I love when people ask me questions and they are willing to learn. (sometimes I might come off short but I still love when you want to know, it's just that sometimes D is such a broad thing that I'm still having a hard time coming up with answers that aren't too overwhelming for the non-D folks out there) I love that when Kortnie's 2nd grade teacher read a book about Type 1 to the kids this year and then let Kortnie show off her pump and test her BG that all the boys thought she was SO COOL!

25. My favortie motto or Scripture is: As the father hath loved me, so I have loved you: continue ye in my love John 15:9

26. When someone is diagnosed I'd like to tell them. "I know it's alot and you are scared to take your baby home and do this by yourself, but you can do it and there are lots of people out there that will help you, don't be afraid to ask for help" then I would hand them a list of DOC websites and blogs, I so wish I would have known about the DOC before I went home not 6 months later

27. Something that has suprised me about living with an illness is: Even though our lives have changed A LOT, in someways our lives have changed for the better. I am able to stay at home with our kids, our kids have more compassion, we eat a bit healthier, Kortnie is a whiz at math I think from all the carb counting. I thought our lives were doomed and "life as we knew it was over" and I guess in a lot of ways our old way of life is over, but this new way of life, it's not doomed like I thought it was going to be.

28. The nicest thing someone did for me when I wasn't feeling well was: When we brought Kortnie home from the hospital there was a huge banner hanging on our front window that said "Welcome Home Kortnie!"" I still don't know who put it up, but it was a nice thing to see. Our hospital was 4 hours away from our home so nobody could really feasibly come visit her at the hospital, but she did have vistors after she got home and that was good to see too that everyone who loved her came to see her and didn't really treat her any differently.

29. I'm involved with Invisible Illness week because: I liked reading everyone else's responses and I thought this would be a good first blog post back after I haven't blogged all summer long.

30. The fact that you read this list makes me feel: Blessed to have you in our lives, whether you are our family, our friend, part of the DOC family, or just a random reader.