Something that I don't like to talk about a lot or to many people, for that matter, is that I have been diagnosed with Crohn's Disease.  It's a chronic condition that is, often, misunderstood and that has symptoms that are unpleasant to talk about, even at the best of times. 
Many of my friends and family members try to relate to what I am dealing with but they just don't realize that Crohn's goes everywhere that you do - to work, to restaurants, in the car, even on vacations.  If you have Crohn's, it's always on your mind, even though you try your hardest to forget about it, so when you don't always have someone who understands what Crohn's is to talk to, it makes for some frustrating moments.  

Recently, I started a new therapy called Remicade that is administered through intravenous infusions.  After several other treatments have been ineffective for me, I figured it would be worth a shot (pun intended) to give Remicade a try, despite the inconvenience of having to sit in a clinic for three hours each time I have to get it.  Around the same time that I went for my first Remicade infusion, I started learning in my ECMP 355 class about Twitter and all of the ways you can use it to connect with others personally and professionally.  A few days after my first infusion, I started to feel a lot different than what my "normal" (feeling) is.  So, I went on Twitter and tried searching the hashtags "#crohns" and "remicade" and I was shocked at the amount of Tweets that came up that contained these tags.  There were so many, that I had to make a new Tweetdeck column so that I could sort through all the Tweets about Crohn's Disease.  In those Tweets, I found a girl who's my age and who Tweeted that she started Remicade a couple of days before I did.  I immediately Tweeted her to ask her how she was doing with her Remicade infusions.  And since then, we have been Tweeting back and forth on almost a daily basis, talking about how we feel, telling each other what our doctors have said, sharing embarrassing stories, and other things that only Crohn's patients could understand.  I am so glad that I have learned that Twitter is more than just a site you write status-type updates on - it's a site that can connect you to people who understand you and what you're going through.  If you or someone you know has Crohn's Disease, or any other condition, for that matter, I would strongly recommend entering the name of that condition as a hashtag in Twitter. You'll be surprised at the amount of support you find!  
 


Comments

06/05/2012 1:43am

I hadn't even thought about using twitter as a way to connect to people who share certain conditions. I mean I've seen how great it is at connecting me to people with similar interests as me so why not people who share a medical condition or life stage. Thanks for sharing your connection. I hope the new treatment is helpful for you and that having a community of support helps even more.

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06/05/2012 8:48am

Thanks for sharing that Denine.
I really avoid focusing the use of twitter as an entirely educational space or rather a "school" space because no doubt you're being educated.

The big point is we no longer have to be alone unless we want to. That message is not just for teachers or students but for everyone. Exploring your passions, interests and curiosities is far more possible than it's ever been. I hope we can use twitter not simply as an end but a beginning to deepen understanding and relationships and that does happen. Not in ways we're used to but in weird and wonderful ways that is possible today because of our ability to connect beyond time and place.

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06/05/2012 9:35pm

In this class thus far I haven't thought about using Twitter for anything other than "educational purposes" and am willing to try more searching. I've finally gotten used to the whole hashtag concept and think that I can learn so much more by digging a little deeper in Twitter. Thanks for opening my eyes and realizing that Twitter can be used for much more than I intended.

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Mitch Bresciani
06/06/2012 4:34pm

Thank you for sharing that story! I have a friend who has Crohn's as well. I think I will refer him to twitter, just as you did. After reading this, I instantly thought of how other people could connect and support each other. I am heavily involved with the Canadian Cancer Society and I thought of people living with cancer or their loved ones connecting and supporting others via twitter. I think I'm going to take a look into this. It's amazing to think of what twitter and other social mediums are capable of!

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Karlee Wiser
06/09/2012 6:29am

That`s awesome that twitter can be used in that way and it can help you connect with people who have the same condition. I have celiac disease, so I wish that I had known about twitter I first found out I have it. It definitely would have helped me in the same way that it helped you. I still don`t know a lot about twitter, but I have a lot of friends who say they use it just like they use google. Technology is pretty neat!

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06/14/2012 9:05pm

Thanks everyone!

Karlee, you can find tons of gluten-free recipes on Twitter if you type in the hashtags #gluten and/or #celiac into the search field. I know how hard it can be to find recipes you enjoy on a restricted diet so I think this would be a great resource for you! If you need any help with the hashtags, or anything, just let me know!!

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