Saturday, September 17, 2011

It's an illness MEME!

So, apparently, this past week was "Invisible Illness Awareness Week". Who knew? And apparently, there's a meme that goes with it, which is something that I guess is like a list that gets passed around, and you're supposed to answer the questions on the list. These memes (and I have no idea how you say it---me, me, or rhymes with theme?) are popular on facebook, and I have done them there before, but this is the first time I've ever done one on a blog. Either way, I suspect nobody actually cares very much.

Still, they're kinda fun, and really, what's the point of a blog if you can't spout even MORE nonsense about yourself? So, here goes.

1. The illness I live with is:Polycystic Kidney Disease

2. I was diagnosed with it in the year: Early 2006

3. But I had symptoms since: 2005, although I have a memory of a doctor palpating my abdomen in prep for anesthesia when I got my tonsils out at 12. He pushed on the spot where I now know is a cyst a size of an orange, and he asked he if anything hurt. I told him it did. He stopped and said, "That hurt?" I nodded, and he looked at my mom. She shrugged and said, "Anything will hurt if you push hard enough." They both laughed, and he moved on with his examination. At the time, I wondered why he bothered to ask me if something hurt if he wasn't willing to take my answer seriously. It ticked me off, and the experience stayed with me as an example of how doctors don't listen to patients. When I was told that there was a good chance I've had these cysts for over 15 years, I remembered that moment. And now that I know why it hurt, in a weird way, it made me glad to know I wasn't crazy.

4. The biggest adjustment I’ve had to make is: daily meds. I'm super bad at taking them.

5. Most people assume: I can do something to stop the progression, or that there is a treatment. Or, that it's no big deal to get a new kidney. I had one friend say, "Why don't you just get a new kidney right now, to get it over with?" Yeah, sure. No big deal. They do it on House all the time, after all.

6. The hardest part about mornings are: um, that they are mornings? Mornings mean you have to get out bed. Beds are comfy.

7. My favorite medical TV show is: House. He's so mean, and yet so likable. Why is that? And it's fun, except for the unrealistic, "Hey, we found you a heart in 30 minutes, let's go do the transplant, and while we're at it, let's give you a new liver from your girlfriend, too!" thing. That kinda bugs.

8. A gadget I couldn’t live without is: My Iphone. Seriously, I'm addicted. And I love my ring tone.

9. The hardest part about nights are: getting comfortable. My kidneys make it hard to lie down on my back or my stomach, so I most often lie on my side. That makes my hips hurt, so I have to change positions a lot. Needless to say, I don't sleep very well. Also, my husband snores, and my dog is super flatulent.

10. Each day I take __ pills & vitamins: 3 pills. No Vitamins.

11. Regarding alternative treatments: I've already addressed that here. I hate it when people who know nothing about medicine, PKD, or my body tell me that they know how to cure me. Drives me crazy.

12. If I had to choose between an invisible illness or visible I would choose: um, invisible, of course. Who wants something visible, like leprosy or ebola? Yuck.

13. Regarding working and career: PKD didn't affect my career. My children did.

14. People would be surprised to know: that my kidneys are the size of footballs. And are seriously nasty looking. I mean, even nastier than normal kidneys, which most people would think are gross, but which I think are pretty cool looking, because I'm an anatomy geek.

15. The hardest thing to accept about my new reality has been: not knowing what could happen in the future. Although that sounds lame, because seriously, nobody knows what would happen in the future. I mean, nobody's passing out crystal balls, right?

16. Something I never thought I could do with my illness that I did was: run a half marathon. Twice. I totally rock.

17. The commercials about my illness:There are no commercials. PKD is not very sexy (although Wilford Brimley isn't very sexy either, and somehow he got that diabetes gig).

18. Something I really miss doing since I was diagnosed is: eating bacon. Love me some bacon.

19. It was really hard to have to give up: caffeine. So hard, I went back to it. Sorry, I'm weak. Plus, I really like Diet Coke.

20. A new hobby I have taken up since my diagnosis is: running. Sorta. You know, when I'm not recovering from a running injury.

21. If I could have one day of feeling normal again I would: Eat some bacon. And maybe wear a bikini because I'd have to take advantage of the fact that my belly button isn't sticking out in a weird way. Other than that, I feel pretty normal every day.

22. My illness has taught me: that hospitals all smell the same.

23. Want to know a secret? One thing people say that gets under my skin is: "I could care less". Really, the phrase is "I COULDN'T care less. (What, I can't say things that bug me that have nothing to do with PKD?)

24. But I love it when people:give me presents. I just had a birthday, and presents are fun.

25. My favorite motto, scripture, quote that gets me through tough times is: Jo Dee Messina's song, "Downtime". You can hear it here. (Sorry about the weird Japaniation video that goes with it--I'm not really sure what that's about. Also, this video of her song, "My give a damn's busted", which is another great song, really shows off Jo Dee's awesome arms, even though they show her rocking out on a guitar during the violin solo.) I used to sing "Downtime" to myself when I was vomiting during my first pregnancy. I have a memory of lying on the floor of a public bathroom, next to the toilet, because it felt good to have my face on the cold tile. I had to sing the chorus, "I tell myself that everything will be just fine. I'm just going through a little down time" to pick myself up off the floor. Yeah, it's a song about getting over a break-up, but it also works great for puking. Again, not specifically PKD related, but a great story, nonetheless.

26. When someone is diagnosed I’d like to tell them: That even when things change about your body, you're still you. That doesn't go away.

27. Something that has surprised me about living with an illness is: how much better I take care of myself, now that I'm sick.

28. The nicest thing someone did for me when I wasn’t feeling well was:mow my lawn. Actually, it wasn't because I wasn't feeling well, it was because my husband hit his head and couldn't function very well, and they figured that if my husband was out of commission, the lawn wouldn't get mowed, and so they mowed it. I didn't tell them that more than half the time, I mow the lawn, and that by taking care of that, they took something off MY plate, not my husband's. I didn't tell them that I was perfectly capable of mowing the lawn, just because I was so grateful they did it. It really did reduce my stress. I might fake another injury, just so they can come do it again. Again, not PKD related, but a really nice thing to do for somebody who is sick and stressed and too poor to have a lawn service.

29. I’m involved with Invisible Illness Week because: meme's are fun, and I like to talk about myself. Plus, my sister told me to do it, and I basically do everything she tells me.

30. The fact that you read this list makes me feel: like you might be disappointed that this list wasn't very funny. Aren't memes supposed to be funny?

1 comment:

RobMonroe said...

Awesome! I might steal this!

I do not think they have to be funny - I always get more about of the honesty that they bring. For instance, I had no idea that I was the only one that doctors have shrugged off when giving them symptoms. SO infuriating.

I am right there with you on #5. I am asked that most often, and was amused when my new nephrologist reminded me that kidney diseases are so funky and not-one-treatment types of diseases.

Thanks for sharing so much!