Tag Archives: epatient

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.

CNN Fighting Words Against Crohn’s Disease

“Today I will fight again. This disease will not own me or define me.”

These are the words I like to begin each day with, stating my intent out loud. Somehow it seems if I actually hear it, it’s easier to live it and believe it.

I have Crohn’s disease, for which there is no cure — a disease that requires a daily personal battle with things most of us prefer not to discuss with others. And for those who must deal with it, one thing is certain. It’s horrible, it’s overwhelming, and it’s humiliating.

 

I could have written the same thing. But those words aren’t mine, they’re from CNN’s Debbi Wynn, who offers her Crohn’s disease manifesto online today. Her story is poignant, but she’s not alone. We are not alone.

 

Remember when we had to suffer in silence?

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.

WSJ Article: How to Fight a Bogus (Medical) Bill

I had the day off work yesterday, and I just love when that happens. A 3-day weekend, followed by a 4-day work week. Love. I spent the day getting through my to-do list, including cooking meals for the week, a doctor’s appointment, cleaning up the house to get it ready for sale, and mountains of laundry. I took the munchkin to daycare, but only for a few hours – she and I got to spend some extra time together in the morning and afternoon.

But the biggest time suck is my finances. Between tax time and medical bills, I have an ever-growing pile of paper that I have to – but don’t want to – deal with. And this includes a few bills from doctors that were much higher than they should be. An article in this weekend’s Wall Street Journal shows I’m not alone. It says that 14 million Americans have medical bill errors on their credit reports.

Personally, even though I don’t have a lot of free time, I always look over my bills before paying them, and if it’s a little fishy or anytime it’s over $100, I always call them to make sure the bill is correct. Just yesterday I had the doctor’s office double-check my copay and found out not only did they have it wrong, but that they mistakenly had that I owed them money. Ended up being a $60 mistake in all.

Crohn’s Disease and Suicide

This is a tough topic to blog about, so it’s making me  a little nervous. But it’s important. So here goes.

I was in a chat room yesterday that focuses on Crohn’s, and a woman there said her husband’s been so sick he’s been talking about suicide.

Now, I don’t know this woman and likely never will. She lives hundreds of miles from me. But I have been thinking about her constantly – no one should ever have to go through this.

Depression is common among people with Crohn’s, or so I’ve been told. They say it’s because many of your happy cells live in your gut, and when your intestines aren’t functioning properly it inherently causes problems with your mood. But beyond that, if you are so sick that you just can’t live your life anymore, it will make it seem as though life isn’t worth living.

I don’t have an answer for this woman. I wish that I did. But that’s why I wanted to write about her and her husband. What is out there for them? How can they get help? They live in a rural community too far from support groups; I think that’s why she was coming online for support. How can this family get the help they need?