Monthly Archives: September 2010

e-Patient Connections 2010 – Dr. Tim Kingsbury + A Contest

This week’s conference really opened my eyes to a number of new things, and at the risk of not being timely, I want to explore those things in separate blog posts. It may take me a while, but hopefully will provide you all with interesting information and perhaps open your eyes in the same way.

The first person I want to talk about is Dr. Tim Kingsbury, who is a physician in Maine, but was speaking at this conference as a patient. Dr. Kingsbury has a rare medical condition that caused both of his hands to permanently cramp in a position that’s hard to explain, so I’ve replicated it and took a photo:

Dr. Kingsbury began his talk by asking everyone in the audience to put their hands into that position, and then to try to clap; obviously impossible. His voice broke a bit when he said, now try holding your wife’s hand.

Previously, the only way to help a condition such as his was with surgery, and he could not do this because it would sideline him from work too much, likely to the point that he’d lose his job completely. So, he was incredibly happy when a new injectionable drug, paired with a non-surgical manipulation, helped him regain most of his hand function. He said that at the procedure, he and his wife – and the doctor even – had tears pouring down their faces, because they were so happy and relieved.

I spoke with Dr. Kingsbury after his talk. He said, “I know it’s not a life-threatening disease, it won’t kill me, but…” That “but…” is the thing. When you have a chronic and debilitating condition, even one that isn’t fatal, you die a million tiny deaths. When my joint pain is so severe that I can’t hold my daughter, when my fatigue is so bad that I can’t attend a friend’s party, when Crohn’s distracts me from any good part of my life, each and every time is a tiny death. Dr. Kingsbury and I talked about how it feels to be taken over by a disease, especially one so misunderstood. We also talked about the way it feels when one drug just changes your life, when it suddenly gives you your whole life back, almost as though all of those tiny deaths never happened.

It was truly amazing to look into Dr. Kingsbury’s eyes and know that he understood me, that he was me, even though we are such different people, not even suffering from the same condition. Although it sounds like a sad moment, it wasn’t – it really made my day.

And I hope to make one of my readers’ days too – I have a special giveaway that I’ll provide to one lucky reader! The prize is a copy of ePatient Dave’s new book, which I discussed in my previous post, as well as a brand new LiveStrong bracelet. To win, just post to one of my e-Patient Connections blog postings and you’ll be automatically entered. Good luck!

Advertisements

e-Patient Connections 2010

Today is day two of a conference I’m attending that focuses, essentially, on how new media can help patients.  Some of the highlights:

This video:

A presentation by ePatientDave, who not only survived terminal cancer, but became an inspirational patient advocate as a result. He has just published a book about his experiences, and I can’t wait to read it.

Learning about a Novartis initiative which utilized a play and videos on Youtube to show what young people with Cystic Fibrosis actually go through. This reminded me a bit of two efforts for Crohn’s Disease, True Guts, which was created by someone with CD; and Innerstate, which was created by Centocor (they make Remicade.)

The giveaways include a fitbit and a ZEO – two devices that monitor your health in different ways, which I will be testing and reporting in future posts.

My main takeaway so far – I think it’s excellent when companies (which are the ones with the money) use their resources to help – REALLY HELP – patients. There are some horrible examples of companies focusing only on greed and I’ve seen just the opposite at this conference, it’s really fantastic.

My Day Job

As I’ve mentioned in past posts, I work at a medical advertising company. I don’t do advertising myself, or work directly for clients, but I do work there. I think that’s important to post here and make clear. My blog, just like the rest of my personal life, is totally separate from where I work. But, I’m human, and as such my views are colored by everything in my life. That includes where I work, who I meet, my medical condition, my friends and family, what I see on TV, what I do on the weekends, and so on.

This is Only Funny if You’re a Parent. Or Scatalogical.

Our daughter has been doing the toddler mimic thing, which is generally pretty hysterical. She’ll copy what we say and do, and when it’s repeated in her little way, well awwww it’s just so dang cute.

Yesterday I was sitting down and she came up behind me, lifted the back of my shirt and said “I see poop.” You know how you have to check a toddler every once in a while to see if there’s a little present in her diaper? Well, she was checking me. And apparently, I had pooped my pants. (Woah, you literal people, not really!)

So when my husband came home, I said, “go see if Daddy has a dirty diaper!” and she did the same to him, digging that chubby little finger into his back and saying, “iseepoop, iseepoop.”

Exer-what?

My doctor said it would be good if I exercised more. Hahahhahaaaahahahahaaaaaaa!

Oh wait, you’re serious? Crap.

I hate exercise. At best, it’s Richard Simmons jumping up and down and being weird. At worst, it’s DEATH – yes, I said it, people actually die from exercise. Probably. Or at least get SO TIRED. And geez I’m already tired. Why do I have to do this? Sigh.

You know what it makes me think of? Gym class in elementary school. Our teacher, I’ll call him Mr. S., was a really scary guy. This was in the 80’s when little kids (even those of us with glasses) were still forced to play dodgeball. They probably only have to do things like yoga now. I always dreaded gym, because he yelled at us that we were lazy, and made us do laps, and the bigger kids (with better aim) always targeted kids like me with those stupid rubber balls. Also, we had that national physical fitness thing that President Regan started (I’m sure my facts on this are fuzzy) so I recall having to run a mile and do as many situps as I could. It just seemed like this weird form of torture, with absolutely no point. Blech. Don’t even get me started on having to change in the locker room.

Have I mentioned that I am really, really clumsy?

Also, I got in trouble in gym a lot because I would get extremely distracted, which is not a good quality when playing a team sport. I would regularly miss the ball during softball because I was looking for four-leaf clovers in the field, or get hit with the volleyball because I was staring into space.

In hindsight, I could have had it worse – my husband’s school actually had gym uniforms. That gives me the creeps. Not only were they – I’m sure – horribly unflattering, but just thinking about possibly getting lice or other ickies – ew, ew, ew, ew, ew.

Anyway, though, my point is that I don’t have the best view of exercise. But I do it. I mean, I do about 20 minutes of yoga stretches every morning, and I walk as much as I can. But when the doc asked me when’s the last time I got hot & sweaty, (and I know that was not meant in the fun way,) I just couldn’t remember. Maybe jumping on the playground with my daughter? I dunno.

I mean, exercise isn’t all bad. I know that it can help relieve my stress, and I know that it can make me healthier. Maybe help make me look good too, if I do it enough. It’s just so haaaaaard to get into it. (whine) Hard to find the time, the energy.

So, my husband and I decided to have a bike riding date. However, see above mention of clumsiness. It’s really bad. Yes, I know how to ride a bike. In the same way that I know how to, say, win the World Series or finish a triathlon. I could probably tell you how, but can I do it myself? Doubtful.

He bought me a bike back a few years ago as a birthday present. Unfortunately, two things happened that kept me from riding it – 1) it was kind of uncomfortable, so I didn’t want to ride it. It was a speed bike type bike, and when I sit on it I pitch forward, so a lot of pressure is on my wrists. As you know joint pain is a big issue for me with my Crohn’s. And 2) I got pregnant (yay!) and my doctor said no bike riding. Not because pregnant women can’t ride bikes, but because clumsy pregnant women can’t ride bikes.

So, it’s been a while since I’ve been on a bike, but I still have hope. While looking around for an inexpensive tricycle for my daughter, I spotted this bike on CraigsList.

Cute! And you know what? I bought it. Because I found it to be a comfortable ride, and it’s already beat up so it’s fine if I fall. Then I scheduled the sitter to come for a few hours this Sunday afternoon.

It’s not a marathon, and it’s not Sweatin’ to the Oldies, but it is exercise, and I think it may actually be fun.

Baggies!

I bought this great laminated fabric recently, and made snack baggies. They close with velcro, and I was able to use the cute tags I ordered last week. What’s great about them is I can give them to my daughter for a snack without having to hold it for her, which I would with a plastic baggie (because she’d try to eat it) or with a plastic container (because she’d throw it.)

          Success!

A Message for My Dad

Dear Dad,

This is how you comment on my blog:

1. See that teeny “Leave a Comment” at the bottom right, under this post? It’s green? Click that.

2. Fill out all the forms under “Leave a Reply.”

3. Hit submit.

That’s it! Love you, Dad!

~Carly