Take Steps 2013

Jun3

Yesterday I participated in the Take Steps for Crohns and Colitis which is run by CCFA. Better yet, I volunteered. Last year I was wiped out from walking so I decided this year I would help out instead. Ok, that took its toll on my body even more. Today my back and neck are achy and my feet are sore. But it was soooo worth it.

One thing I like about the walk is the location. I was helping out at the Liberty State Park walk and the views from there are breathtaking.

After I take this in I head over to my assigned area, the food tent. This year I decided to put my talents to use. I helped get donated food for the walk. I was able to get some coconut water, vitamin water, Smartwater, fruit and chips.

After we got set up, I decided to look around before it got real busy. There were tents for some drug reps (Humira, Remicade), Team Challenge sign ups, the Kids Corner with bouncy house, and the DJ. All was quiet before the storm.

As you can see from the pictures, it looked like a storm was coming but luckily, the rain held off. The wind was pretty powerful though. With the almost 90 degrees and humidity, the wind was refreshing.

At 4:00, the walkers were off for a 2.15 mile walk. When they came back that was when the real fun began. Our tent got mobbed. Aside from what I brought, we also had sandwiches, cookies, granola bars, orange juice and spring water. Pretty much everything went.

One thing I have noticed about these walks, and it disturbs me a little is that everyone chats but no one really talks about the disease …. which is why we are all here. I was talking with one of the volunteers and he asked why I was there. I mentioned I had Crohns. He said his son has Crohns and that was it. No further discussion. It really hit me that although everyone comes out to bring awareness and come together, no one really wants to talk about it still. My only conclusion is because it isn’t just the patient but friends and family there also that they don’t feel like opening up. I can understand that.

This up coming weekend is Get Your Guts in Gear. I know a lot of the volunteers that will be there. I know we will be talking about it a lot more but we will also have fun and talk about other things. 2 weeks and 2 awareness events. It is enough to tire these old bones. After the walk, I feel achy. Hate to see what next week brings. Stay tuned for a recap.

My Take on the Escape The Stall Ads

Jan11

Yesterday I read a blog by another blogger, Marisa, which can be found here. This lead me to a post written by Sara found here.

The reason I mention these two blogs is because they kind of opened my eyes to the new campaign going on by The Crohn’s and Colitis Foundation of America (CCFA) called Escape the Stall (http://www.ccfa.org/escapethestall/). The face being put to the campaign is Amy Brenneman who is known from such shows as Private Practice, NYPD Blue, and Judging Amy.

First, I applaud Amy for coming out of what I call the IBD closet. It is great to have another face to the disease. I am also very happy that the CCFA is finally putting ads and stories out there nationally. IBD is usually talked about quietly in dark corners. CCFA is now bringing out into the open and I am very happy and thankful for that.

I had read the reason for why they went with this campaign and at first it didn’t bother me. I admit I have used bathroom humor in the past as I have a page on Facebook called Bathroom Talk. But as I look into myself, I know I did it as a way to cope.

Over the past year I have learned so much about IBD. Crohn’s and Colitis is no laughing matter. Yes, a lot of us use laughter to cope with our chronic illness, but in no way should the illness be looked upon in a funny way. As the ads show, we spend a lot of time in the bathroom. Anyone with IBD knows this is a reality..but it is a small part of the disease. And this is where I come to the realization that the CCFA ads are not a good idea.

So many people with IBD are sick. They have no energy. They can’t do simple things like get out of bed. Some people are in constant pains. Belly pains, joint pains, muscle pains…just overall pain. There is nausea, fevers, rashes, and eye problems. We take horrible medicines that give us really horrible side effects with some of those being untreatable cancer. Many people with IBD have numerous scars from many surgeries. Some people spend months in a hospital bed hooked up to tubes. Many suffer from drastic weight lose and look like walking skeletons.

Now you are probably thinking, “Wow, people with IBD have it bad”. Well, yes we do. But looking at the new ads, all you would think is that we spend a lot of time on the toilet. When people put out ads for cancer we see bald people hooked up to chemo. When there are ads for emphysema we see broken down people hooked up to oxygen tanks. The no smoking ads in NYC show people with amputations, trach tubes, and just looking horrible. So where is our graphic ads?

When it comes down to it, seeing an underweight person with IV’s and an NG tube laying in a hospital bed with some surgical scars would be more effective than saying “Hey this person poops a lot. Help them out”. I recall when I first got diagnosed as a teenager with Crohn’s that my doctor told me that I would most likely have at least one surgery in my life due to the disease. Where is that fact in the ad.

I am grateful for all that CCFA has done and continues to do. I will be volunteering this year for their Take Steps walk and hopefully for Camp Oasis. But I have to say that I am shamed by their new and first national ads.

Day 5 – Write a #ListOf3 Things that you’re thankful for / excited about / or inspired by

Nov5

For today’s post I had the choice to write about a Health Activist Soapbox or this…and I think a lot of people will choose the soapbox so I am going with this one.
List of 3 things. Oy. Where to start. I think of talking about 3 of one topic I will talk about one of each topic.

Topic 1 – What am I thankful for? Very strong question and with Thanksgiving just around the corner this is on my mind. I have gone through so much this past year and there is so much to be thankful for. The most recent thing is that I made it through hurricane Sandy without major issues. I can say I am still alive and in pretty good health. I have a job in times when unemployment is high. But my answer to this question…I am thankful for my doctor. First..if you haven’t yet, go read my previous blog on day 3……….ok, your back. Now you know where I am going. I am thankful for my GI doctor. So many patients have doctors that don’t listen and worst off don’t care. A lot of docs just seem to go through the motions and don’t seem real invested in your health. My doctor though is different. He listens. Not just to what I have to say but he listens to my advice. He doesn’t spew advice from medical books. Instead he bases his thoughts on current research. Recently I wanted off Humira and wanted to try out Low Dose Naltrexone. He had no experience with the med, knew nothing about it as a treatment for Crohn’s, yet he did his own research, listened to my concerns and decided to work with me on a solution to healing my Crohn’s. I don’t know if the medicine will help or even if I will be able to tolerate it long-term but my doc is letting me experiment with it and he is learning at the same time. He is great for all that he does and I can tell that if he takes the time to do research for me then he is doing it for other patients also. And for these reasons I am very thankful to have found him.

Topic 2 – What am I excited about? This up coming year I am excited for so much. First, instead of walking in the Take Steps walk I want to volunteer. I want to be able to give back some. Also, I am not great at fund-raising so this is my way of helping out my cause. I am excited to work at the walk and talk with others affected with IBD. But my excitement doesn’t end there. In 2013, for the first time, I want to volunteer my time at Camp Oasis. This is a camp that is held for a week in the summer for kids with IBD. Most of the staff and medical team have IBD and the kids can look up to them and see that there is hope to living a normal life. This is the reason I became a health activist. I grew up alone with my disease. This year I said to myself that I didn’t want anyone to have to go through what I did. I wanted to help people, especially the kids know that they are not alone. What better way to do this than to talk directly with them at Camp Oasis. I hear so many stories from people on how much fun it is working there. I want to finally experience this joy and if all goes well..I will. Just thinking about it now gets me excited.

Topic 3 – What has inspired you? For me it isn’t a what but who. Again, if you read my blogs, you probably know this answer already. So go ahead and look back over my previous blogs. If you don’t have time, just look at the guest post I did for WEGO Health. All the names are there. Sara, Kelly, Maggie, Charis, Jackie. These were just the first batch of people to truly inspire me to speak up and do what I now do. As time goes on, I have met other people and heard their stories. Now I have other people inspiring me….Alyssa, Pat, Amanda, Michael, Peter, Claire, and so many others. Now, I don’t want to put last names because I don’t know who wants their name out there..but if you run in the circles I run in, you probably know these names.

Thank you CCFA for the exercise.

Jun4

On Sunday, June 4th, I took part in the Take Steps for Crohn’s and Colitis organized by The Crohn’s and Colitis Foundation of America. It was held in Liberty State Park in Jersey City, New Jersey. I never realized just how historic this park was until I got there. There boats for tours to Ellis Island and the Statue of Liberty leave from here. What makes them historic is that immigrants used to come here and catch a train to either New York or further into New Jersey.

When we arrived, it was raining a little, but not too much. By the time I reached the check in tent, it had stopped. My wife and I checked in and then walked the grounds waiting for the start of the walk. I had brought my dog along because she likes walking and could use the exercise. While my wife rested, my dog wanted to start and ran around.

At 5:00 they called everyone to the start line and we were off. Now, I knew ahead of time that the walk was 3 miles and in the past I would have had no problem with that. I didn’t realize just how far it is until I started walking. We walked 1.5 miles one way, turned around, and walked back. At the 1 mile mark, my legs were starting to feel the burn. My little dog seemed to be holding up better than me.

During the walk, the sun was shining and it was beautiful. On the way back though, the sky got dark and the rain came. My wife was smart and had an umbrella but I forgot mine. I had a poncho in my backpack, but was too tired to take it out. As we reached the base camp, the rain stopped and we were greeted by a great site.

Overall, I had a good time. My legs were aching later that night and I was beat. My dog looked beat also and slepted real well. CCFA does this walk all over the country. This year was my first walk and I raised $506. I was worried I wouldn’t raise any so this amount shocked me. I plan on doing this again next year and hopefully I will be in better shape. The best part of the walk was seeing all the support for us sufferers of IBD. One group raised over $27,000. The love is out there for us. YEAH.