An Aware World

I would be remiss if I didn't mention that April is Primary Immune Deficiencies Awareness Month. Whoop tee doo. Every year I post a bunch about it, every year it's the same. People ignore it because it's not their issue. Ok whatever. That's fine.

This year, I've decided to go with a different thought path. What would the world look like if it were more aware? More specifically, what would the lives of my friends be like if we lived in a world where PIDD wasn't so strange or foreign or scary or... insert your favorite negative adjective here. It's always going to be a life altering diagnosis, but it doesn't have to be a life-ending one.

My friend G would be studying for her PhD in vocal performance and pedagogy. Her coloratura would be known in the opera community as one of staggering power and emotion. She would travel the world, in demand for her pitch perfect interpretation of Rossini. She would draw crowds wherever she went. Her classical albums sell consistently well and she lives quite comfortably. The adoring crowds love her vulnerability and are impressed that she balances her busy career with motherhood and chronic illness.

My friend L would be doing a number of things. What I most see her doing? I think she'd have her own dance studio, where she'd share her love of ballet with students young and old, teaching them the techniques she learned at ABT and Joffrey. The positive and creative atmosphere would inspire her students and attract world-renowned talent for masterclasses in her studio. She would host special performances of her studio's award-winning performances for children from the local hospitals, knowing that, because of her great team of doctors, she was able to live her dreams.

Why are these scenarios not the case? My friends were not diagnosed or treated properly. In some cases, they still aren't. They could have been. It could have been a different world for them. I hope that, someday, little girls like G and L will be able to fulfill their dreams and not feel so limited. I hope that PIDD becomes something that can be more benign and not cause lung damage, ridiculous infections that require a year on antibiotics, and will be something that is more manageable. I want PIDD patients to have full lives. All of them. Not just the lucky ones who are blessed to be diagnosed early or have uncomplicated presentations.

Facebook Status "Awareness Month"

ADHD Awareness Month is September.
Autism Awareness Month is April.

Why am I seeing status messages that say that they are now and that you should definitely change your status to whatever disease thing? People are total sheep. They add whatever disease they're connected to to such status messages and post them. I saw one once that stretched the limits of belief. Did you really need to list the 86 diseases you think are invisible on that status? No, probably not. Did anyone become more aware of your particular illness because of that status? No, probably not. Would they become more aware if you posted information and helpful tools about your illness? Probably more than with just a status message.

I really can't understand all the status-message-chain-letters around. Have we not learned that lesson in print? Ok, then via email? No. No, we havent. I understand you want to be sympathetic to whomever posted the status in the first place, but how about offering a casserole, or if you're far away, send them a nice email or card? Why does your status message need to say "If you don't post this as your status for an hour, you hate all people with cancer?" The fact of the matter is, it doesn't need to say that.

Besides all of this, most of the "Awareness" stuff I see on Facebook is just thinly-veiled name dropping. How about, instead, we actually learn about these illnesses, the warning signs, all of that kind of thing? Can we post those as an alternative to these silly "awareness" photos and messages? Because those might actually help someone come to a diagnosis or figure out what's going on with their situation. But no one wants to know that the really have that disease or diagnosis, do they?

Yet Another Breast Cancer Post

Andrea Mitchell has announced publicly that she has breast cancer. She was kind of flippant about the whole thing, which you can read more about here. The dismissive nature of her message was very odd to me. I certainly hope she's not in some kind of denial about the routine nature of breast cancer (1 in 8 women get it, according to what she said, and then went on to make it sound instantly curable). I think it's dismissive of the pain that women feel when they go through this disease and can make it a more lonely feeling.

I feel very strongly that the conversation on health in this country is so backward. We attach ourselves so closely to outcomes that we can't have the requisite compassion for people. Yes, breast cancer is very curable, but that curative process is very difficult both physically and emotionally. I wish more people recognized that about all illnesses, not just breast cancer.

SPOILER ALERT!

After my previous rant on the subject, I thought for sure I wouldn't get these:

Ok ladies, it's that time of year again, in support of breast cancer awareness!! So we all remember last years game of writing your bra color as your status?.....or the way we like to have our handbag handy? Remember last year so many people took part that it made national news and, the constant updating of status reminded everyone why we're doing this and helped raise awareness!! Do NOT tell any males what the status' mean, keep them guessing!! And please copy and paste (in a message )this to all your female friends to see if we can make a bigger fuss this year than last year!!! I did my part... now YOUR turn ! Go on ladies...and let's have all the males guessing! .. It's time to confuse the men again (not that its really that hard to do :)) Everyone knows it makes their brains work wonders on what we're talkin about!! The idea is to choose the month you were born and the day you were born. Pass this on to the girls only and lets see how far it reaches around. The last one about the bra went round all over the world. So you'll write... I'm (your birth month) weeks and I'm craving (your birth date)!!! as your status. Example: Feb 14th= I'm 2 weeks and craving Choclolate mints!January-1week Febuary-2weeks March-3weeks April4 weeks May-6weeks June-8weeks July-10weeks August-12weeks September-13weeks October-14weeks November-16weeks December-18weeks ..Days of the month: 1-Skittles 2-Starburst 3-Kit-Kat 4-M&M's 5-Galaxy 6-Crunchie 7-Dairy Milk 8-Lollipop 9-Peanut Butter Cups 10-Meat Balls 11-Twizzlers 12-Bubble Gum 13-Hershey's Kisses 14-Chocolate Mints 15-Twix 16-Resse's Fastbreak 17-Fudge 18-Cherry Jello 19-Milkyway 20-Pickels 21-Creme Eggs 22-Skittles 23-Gummy 24-Gummy Worms 25-Strawberry Pop Tarts 26-Starburst 27-Mini Eggs 28-Kit-Kat Chunkie 29-Double Chocolate Chip Chrunchy 30 Rocky Rd 31 Milk Duds

Awww. Did I ruin the "game" and your "fun?" Perhaps you shouldn't send me these things. How about it? Sounds good to me. Yes, I realize I'm a grump. I have my reasons. See post linked above.

"What'd you do to your arm?"

A colleague asked me that today after I came in after IVIG.

I could have used it as a teaching moment and probably should have, now that I'm thinking about it.

I could have told her about having a PIDD and what it means and how I essentially got a new donor-provided immune system today. I could have told her how important it is that people donate plasma and how beneficial it is for people to do so regularly. I could have let her know that I don't miss work because I'm flaky or a hypochondriac.

But...

I just told her I had a blood draw. I guess I did, so they could check my IgG levels, but that's not the primary reason for the bandage on my arm.

Oh well, I suppose.