Category Archives: Blogging

CCFA Ad Campaign + New (to me) Blog

What do you think of the CCFA’s current ad campaign? It centers around the bathroom as essentially a jail for people with Crohn’s & UC. I think it’s one of the few times an IBD organization has really faced the embarrassing truth around what IBD is really all about and I have to give them kudos. Especially because several friends emailed me photos of the campaign when they saw it and just felt compelled to send them to me. It’s a good sign when a campaign is shareable.

escapethestall-300x300

I noticed Blood, Poop & Tears had a little something to say about it too: http://www.bloodpooptears.com/the-ccfa-ad-campaign-aint-no-party-like-a-butt-hurt-party/

Advertisements

Barking Dog Shoes

During one of several conversations with Chronic Babe (aka Jenni) at ePatient Connections, our convo turned to shoes. This happens whenevver women converse for more than 10 minutes, or so I believe based on years of experience. Since my Crohn’s manifests in joint pain and because my hips are chronically out of whack, I need to wear comfortable flats, despite the fact that my inner badass would rather be in 6-inch Laboutin stillettoes. Jenni’s shoes were adorable AND looked comfortable, and she highly recommended her friend’s site Barking Dog Shoes. Holy moly, this place is a relevation.

They’ve got answers for any type of foot problem (although it seems to just be for women, sorry guys.) They try out and recommend brands. What a fantastic resource.

On the Wagon

I’m not a drinker, but there’s plenty of other wagons for me to fall off of – the healthy eating wagon, for example. Sleeping well wagon. Exercise wagon. And of course, blogging wagon.

Over Christmas I started eating sweets and I justified it by saying that the Christmas season is really only a month.  But then January just seemed to bring more sweets. February brought Valentine’s Day chocolate. When I walked into CVS and saw a display of Cadbury Creme Eggs I knew it was all over for me. I have a mega sweet tooth but it leads directly to my stomach and tush.

At the same time, I started really feeling my lack of exercise. Now that I drive to work, I have to look for excuses to exercise. But it’s easier to find excuses to lay down.

 

I’m getting better, though. I started getting up at 5:15 every day to do an exercise video. I find myself thinking evil thoughts about the aerobics instructors on-screen, but in all fairness I am getting my heart rate up. I haven’t fully figured out how to avoid sweets, but I’m trying to have a cup of tea first each time I crave sweets, to see if it will help the craving go away. And last night was the first that I got to bed on time, just trying to keep myself from getting tired.

 

The other wagon I fell off was the seeing-my-doctor-wagon. I see my GI and rheumatologist regularly enough, but never seem to get around to making a PCP appointment, in fact I didn’t even have one anymore since we moved. So, I made an appointment for next week. I’m trying, trying so hard! We’ll see what happens next…

UNGH I am SO BEHIND

I’m sorry to those who like to read my blog for my complete lack of posting over the last few months. I’m happy to report it’s for good reason – my wonderful job allows me so much creative expression that I haven’t had much creativity left over to blog. But I do miss blogging, and so much has still been going on in my life.

Humira continues to work well for me and I’m feeling good. I also started some light therapy using a Philips Go Lite box, which I bought on ebay because they are pricey. It seems to work well – even though it’s that time of year that everything is dark, dark, dark, I haven’t felt down. It does help also with keeping me awake and energized – I’m back down to one cup of coffee a day!

And, I’m not sure if it’s decreased stress or decreased caffeine, but I’m having fewer migraines lately. That is a huge relief. I guess it was a bit of a cycle – I’d be exhausted so I’d drink coffee. The caffeine would give me a migraine. I’d take Exedrin or Advil and eventually get a stomach ache. I’d be so uncomfortable I couldn’t sleep. Repeat. The light box cuts into the exhaustion issues and kind of breaks that cycle.

ePatient Connections Day 2

On Day 2 of ePatient Connections I just can’t help thinking about being a double agent. Because I am one. But not in the cool spy sort of way. I work in the healthcare industry, and also I’m a patient. It’s two worlds that for some unexplainable reason are very separate. I don’t want to wrong my fellow patients fighting the Crohn’s fight by making it seem like I’m working for “the other side.” And yet, I am. I work, directly and indirectly, with some of the people innovating in healthcare: pharma, nonprofits, etc. So many people hate pharma. I understand that, I do, I’m a PR person after all. But because of pharma I can live my life, because of the scientific advancements they’ve made that allow me to have a normal life. And I have loved pharma for that – and always will – no matter who is responsible for my paycheck.

I’d like to say that by day I do PR for an ad agency that specializes in healthcare, and that by night I’m a mom and a wife and a patient. But I’m not. I am all of these things all of the time. Living with an incurable disease makes me better at my job, because it helps me help my colleagues understand what I really truly go through, and what my fellow fighters and survivors go through. And working for a company that understands Crohn’s disease means that I get time off when I need it to get rest when I need it or go to a doctor’s appointment or just plain find that balance that has eluded me in every other industry.

For me, not being a double agent means … well the only way I’d be able to do that would be to stop blogging. Because (thank you, stupid Crohn’s,) I need health insurance, so I can’t exactly quit my job. But not just that – I need my entire life. I need my career, it makes me feel whole. So that won’t happen. I’ll always be a double agent. I’ll always keep working to do all of these things that help fulfill my life.

But wait. Maybe one day I won’t need to be a double agent because maybe one day my two worlds will connect. ePatient makes me feel like perhaps that could happen.

ePatient Connections 2011 Day 1

For the second year in a row I’m attending ePatient Connections, a very different sort of industry event. Where conversely a lot of conferences can tend to be dry, this one is incredibly informative and inspiring.

 

It’s so easy as someone with Crohn’s to feel really alone, like no one else in the world understands what if feels like to have to deal with life being harder just because it’s your life. And then when I see others going through these challenges I feel less alone, and so inspired that if they can fight and beat this, so can I.

 

The first strong inspirational story came from Charity Tilemann-Dick, an Opera singer with a rare and terrible disease that forced her to get a lung transplant to save her life; you can see her story on the TedMed website. I got to meet her and her mother, and it meant so much to be able to tell this woman how strong and inspiring she is. I turned to her mother and just started to bawl – I’m so amazed that she can stay so strong when this is all happening to her child. I couldn’t help but think that if something happened to my baby girl I just wouldn’t be able to handle it. And here was this woman so strong, standing by her child. It was sad, but inspiring too. It made me feel like what I’m doing is so much easier to deal with than what could be.

 

The next story that made me tear up was from the Detroit Medical Center, about a young woman paralyzed in a car crash who wanted to walk down the aisle at her wedding. Go ahead, try watching this without feeling like you’re going to cry. 

In between the emotional roller coasters are leaders from hospitals, pharma companies and other healthcare type companies who are all working to get patients and doctors more connected…well, I hope anyway!

Unfortunately I have to leave before the day is fully over so I can pick up the munchkin from daycare. But there’s still one more day of inspiration tomorrow.