The Health Activist’s Writers Month Challenge – Day 23 Technology

Write about how your life would change if there was no social media.

I kind of touched on this is some of the other posts that I have written. What would I do, or better yet have done, if there were no social media?

No social media. That means no Facebook, no Twitter, no Instagram, no Pinterest…etc. That would be almost no interaction with other people with my disease. Well, for most of my diseased life, I didn’t have any social media. I grew up and was diagnosed in the 80’s. There was no internet. Computers were still in their infancy. And I think by now you know how I dealt with my disease. I ignored it. I didn’t know anyone else with IBD. I didn’t talk to anyone about my disease. I just lived day to day ignorant of what my disease was all about.

In all honesty, I haven’t been on social networks for that long. I have only been on Facebook for maybe 5 years…Twitter for a little less. Since I have had my disease for about 25 years, social media has played a small part overall in my life. However, it has made a major impact. It has helped me come to terms with what I have. I have found an outlet to help speak my mind and deal with issues.

Social media has really helped me in one way. It helped me get the courage to start this blog. It was only after talking to some people that I decided to do this. I would never have met them without social media. It all started with YouTube. That is where I saw videos of inspiration. I then went to Facebook to talk to these inspirational people. Without those two sites, I would still be alone with my disease.

Social media is also allowing me to help others. One of my main goals now is to help others so they don’t feel alone with their disease….like I did. Without social media, I probably wouldn’t be successful at it. I could still write a blog but not many people would know about it or read it.

Our disease is often overlooked. It doesn’t get the best research. It doesn’t have tons of money thrown at it. Many people don’t know what IBD is. Social media is helping to change all that. Us IBD Warriors are now coming together and spreading the word. Thanks to social media, we have a voice now and maybe one day a cure.

The Health Activist’s Writers Month Challenge – Day 11 Favorites

Apr11

Write about your favorite social network. Do you love Twitter? Facebook? Pinterest? Why?

I can remember being a kid growing up in the 1980’s. We would spend the day outside playing with our friends and having fun. After school we would come home and actually do homework. If we behaved we got to watch about an hour or two of television before going to bed. Things were simple and fun.

Now, I can’t imagine not having a computer and on top of that, not having social media. After I boot up my computer and checking emails, the first sites I go to are social media. If I have a question or problem, I no longer Google them, but go to a group online and ask away.

But what is my favorite? Honestly I don’t know. I spend most of my time when I am home on Facebook. I have met many people on there and belong to a number of groups…some IBD related, some not. I was thinking of mentioning some of the groups but then I realized that they are closed groups so the people running them might not want me to mention them. So I won’t. But if you have IBD, just do a search and you will find a lot of groups that deal with IBD. I have met so many great people from these groups and they really have helped me to deal with my disease. It is the one thing that was always missing from my life…meeting people with my disease.

Another great thing about Facebook is that it is Real Time. You can chat with people instantly. Not only have I met some great people, but I have talked with them one to one and gotten to know them better. I have gotten to speak to some of my IBD idols and not only have they helped me out but I have been able to help them out also. We can be there to be a pick me up for each other when needed.

Besides Facebook, I use Twitter a lot. Again, I have been lucky to meet a lot of people with IBD with this site. Again, like Facebook, you can talk to someone in real-time. The only drawback is that you are limited to the amount you can say. A tweet has to be no more than 140 characters. That may sound like a lot of letters but believe me, it isn’t. There can also be a lag at times with Twitter so it isn’t always instant.

The last type of social media site I like, but don’t use as often is YouTube. It was the site that helped get me started on my IBD journey. It is where I got inspiration when I was sick. It is where I learned I wasn’t alone. It is where I met Sara, Maggie, Kelly, and many other inspirational people. I myself tried using YouTube to start my blogging journey. I quickly learned that I was a camera person and I can do better by typing out my thoughts.

Now, there are many more sites out there and some of you might like them. That is fine. I am not against sites like Pinterest or Instagram..I just don’t use them much for IBD related things. Many people do use them so my advice is to go out and explore. Don’t just take what I have to say as an end all. Search the internet. Explore around and find sites that are a good fit for you. There are so many different websites out there. Go out there and have some fun. Just don’t forget to come home for dinner 🙂

Crohn’s Disease Warrior Patrol: A Charity Is Born

Mar15

This is a repost from http://www.healthline.com/health-news/crohns-warrior-patrol-charity-sponsors-hospital-visits-031313 The article was written by Jaime Weinstein, a fellow online health activist

No matter where you turn these days you see commercials and print ads featuring #Hashtags, links to Facebook and Twitter pages, and QR codes for corporate contests. However, social media isn’t just for advertisers; it’s for patients too.

Social networks are a means for patients living with IBD who are located across the globe to reach out to and communicate with one another. It was also the catalyst for Michael A. Weiss to create the Crohn’s Disease Warrior Patrol (CDWP).

A Beautiful Idea

In the late fall of 2012, Weiss, a lawyer, author, and long-time Crohn’s disease survivor, blogged about the need for patient support from others who understand things that only other IBD patients can. A few weeks later, Weiss was contacted via social media about meeting with a young patient named Damon, his mothers, and his older brother.

Ivy Lindsay of Comfort Ostomy Covers by Ivy was originally contacted by one of Damon’s moms to create personalized ostomy covers for Damon, who was having a hard time coping with not one but two stomas (ports in the abdomen that are used to remove waste from the body). One of Weiss’ blog readers and Facebook friends who also happens to be an IBD advocate, Jeffrey LeVine, told Lindsay to speak with Weiss about her young client.

They talked at length about the young patient and his needs, but something was still missing: another IBD patient with an ostomy whom Damon could relate to. In came Marisa Troy. LeVine introduced Troy into the fold, and few phone calls later, arrangements were made for the trio to embark on their mission to meet Damon and raise his spirits.

“Marisa was amazing with Damon and I was impressed with her ability to make him feel at ease while she was also being so candid about her own experiences,” Weiss said of Troy. You can read more about the CDWP’s inaugural visit with Damon here.

This was the kind of interaction Weiss envisioned when he blogged, “Patients helping patients is the best medicine.”

The Birth of a Non-Profit

After meeting with Damon, Weiss embarked on a quest to expand the CDWP. He wanted to create an organization to connect Crohn’s “warriors” and advocates with hospitalized IDB patients to offer them comfort and a friendly, in-person visit.

Several of Weiss’ social media contacts referred him to Alex Fair, CEO of Medstartr.com, a website that utilizes crowd funding for healthcare start-ups. With the help of Fair, a few lawyer friends, Wall Street financiers, and Foundation executives, Weiss crafted a multi-phase business plan for the CDWP and will file for Tax Exempt Status from the IRS as a Charitable Foundation under section 501(c) 3 within the next few weeks.

The CDWP: Not Just for Crohn’s Patients

The CDWP is not just for Crohn’s patients, it’s for all IBD “warriors.” And through the Medstartr initiative, Weiss is hopeful that CDWP will be embraced by IBD medical practices, psychological practitioners, hospitals, and pharmaceutical companies.

If you would like to become an IBD “warrior” helping other patients in your area, you can sign up at: http://crohnsdiseasewarriorpatrol.org/.

I was happy to be involved in this meeting with Damon. I felt like my part wasn’t that big and I was just doing what needed to be done. My original post about this can be found here https://aguywithcrohns.com/2012/12/31/goodbye-2012-hello-2013/.

Day 15 #NHBPM – Why Healthcare Companies (or healthcare professionals) Should Use Social Media

Nov15

This is an interesting topic because you can look at it from a number of different ways. Do you want to be friends with your doctor on Facebook, or do you just want him/her to see what the community thinks? To what extent should they be using social media for?

I currently go to Mount Sinai in NYC to see my GI doctor. In the past couple of years they have started using a system called MyChart. It is a system where you can have access to your charts and labs but also, and this is the part I love, you can send a message to your doctor and have him/her respond back. I have used this a number of times and it is definitely faster than email. Yes, it isn’t social media, but it is a first step.

So what is social media. Those words get thrown around a lot, but do you know what it is? Wikipedia describes it as the following:

“Social media employ web- and mobile-based technologies to support interactive dialogue and “introduce substantial and pervasive changes to communication between organizations, communities, and individuals.” Social media are social software which mediate human communication. When the technologies are in place, social media is ubiquitously accessible, and enabled by scalable communication techniques. In the year 2012, social media became one of the most powerful sources for news updates through platforms such as Twitter and Facebook.”

Now, should your doctor be accessable on sites like Twitter and Facebook? Remember your doctor is spending a lot of time treating patients in their practice and then probably spend time in the hospital seeing patients or doing procedures. Do you want them to spend less time with patients so they can tweet “Going to stick a scope up a bum..Wow..What a view”? Personally, I don’t mind that I can’t chat with my doctors in chat rooms. It means that they are working and I like that. We shouldn’t be pals or friends with them. The relationship should be kept professional.

Now, what about the practice themselves like a hospital or lab or even your doc’s private practice. Now a days, businesses have Twitter and Facebook accounts to help drive business. I am not against this. It would be nice to be able to get information from these sites instead of trying to call. I remember a couple of years back when I was getting Remicade infusions. There was a big storm the night before and I didn’t know if anyone would be there to administer the medicine. It turns out there wasn’t. I had to rely on the phone though to get this info and getting through was not easy. It would have been nice to just log on to Twitter and see a tweet..”Big storm, nurses snowed in, no infusions today..please reschedule” Not only would this save time in contacting everyone but I would know not to bother trying to get in.

I would love to hear everyone’s thoughts on this topic. I am sure there will be a big debate on this. Please leave a comment and let’s get the discussion rolling.