Check out the interview below that I did for Sarah who writes the blog My Jouney With Crohn’s, that you can find here: http://www.myjourneywithcrohns.com/2013/01/interview-with-sara-founder-of.html#
Thanks Sarah for interviewing me and good luck with all that you are doing in our community!!Q: What is the name of your website and when was it created?A: I created Inflamed & Untamed in September 2011. It’s hard to believe that it’s only been a little over a year and it has become so popular. Besides Inflamed & Untamed I also founded Sick Girl Beauty Vlog which is a YouTube channel for females with any chronic illness that gives tips and tricks on looking and feeling your best despite living life as a “sick girl”.Q: What motivated you to create this website and what do you hope to accomplish from it?A: I created Inflamed & Untamed to offer patients what I so badly needed for years but didn’t have, and that was someone who “got it”. I am especially proud of my videos because others with IBD can watch my videos and relate to the things that I say. I used to search other blogs and video blogs and always fell short. There were a lot of people out there spewing incorrect information or making Crohn’s disease and ulcerative colitis seem like a walk in the park. I wanted to offer people everything all in one place: accurate information, support, my story, and “a voice”, and do it all with a little dash of humor and fabulousness! hahaQ: What is the best way someone can get involved with “Inflamed and Untamed?”A: The best way is participating on my facebook page that co-exists with my blog. This is the place that patients can interact with me and also other patients. I post my blogs there but aside from that I post questions to get people talking and others have the opportunity to ask questions. I try to offer something for everyone. There is the more serious side of things, but I also do fun things like giveaways where readers can win prizes and stuff like that.Q: What new projects or posts do you have lined up for “Inflamed and Untamed?”A: I always have a HUGE running list of future projects and goals. I am working on new videos right now and planning for Crohn’s & Colitis Awareness Week currently. I’m also working on a lot of behind-the-scenes things right now to make my blog even better. I really just hope to always be a constant support to the people who take the time to read my blog and interact with me. It’s all about them, that’s why I do this. Whatever I can do to better educate them about their disease and also let them know that they are not in this alone. I’m right there with them. I always want to be easily accessible and appear open to communication - because I am! I want them to know it’s okay to email me, message me, etc. if they ever need a listening ear.Q: What are your future hopes for “Inflamed and Untamed?”A: To me it’s not a popularity contest. Though I want a large community it’s not because I want to be some IBD superstar. Rather I want to grow so that I can become a huge source of support to others. I am so passionate about what I do and the better able I am to get my message out there is what it’s all about. I so enjoy working with patients and I would like to do that in as many ways as possible because I truly do care about what I do. Right now I am working on the “look” of Inflamed & Untamed and will be changing the branding and look of everything. I am also working on getting donations and advertising on my site. There is a lot of out of pocket costs people don’t realize exist and it would be nice to have some money coming in so that I can do more. That would enable me to keep doing giveaways, buy better software, cover the cost of the domain, a blog theme, business cards, etc. etc. So ideally I would like to have the resources to grow in all directions and offer my “fans” even more.Q: Do you struggle with Crohn’s Disease? How old were you when you were diagnosed? How do you feel that has impacted your life?A: I think “struggle” is an understatement! I was officially diagnosed at age 14 as having ulcerative colitis, though I was hospitalized yearly starting at the age of 10 months old. Turned out I was misdiagnosed and had Crohn’s disease all along. How has it not impacted my life would be an easier question to answer! I think that having Crohn’s disease has changed every aspect of my life to some degree. Physically, emotionally, financially, etc. I spent so many years embarrassed of this disease and ashamed of myself. It was like carrying around this big secret and was such a huge weight on my shoulders. At my very worst I was 82 pounds, in the hospital for six months, and wearing adult diapers trying to recover from two major surgeries I was having complications from. Even then I never opened up my computer to reach out, and the very few times that I did I couldn’t find someone out there that I related to. It’s hard to believe that I was that embarrassed and ashamed of my disease when you meet me now. I have come a long way and that weight on my shoulders has been lifted significantly because others have started helping me carry it. That’s what it’s all about - creating community so that you don’t have to carry the weight alone. The more you open up and start talking about it the less alone you feel and the more “normal” it becomes. We have to treat not only the physical symptoms of the disease but we have to treat the person. That’s what I do, I treat the person. And that answers the question you just asked - Crohn’s disease changed the whole direction of my life. It’s now the primary work I am involved in. I can be thankful for that.Q: What are some tips you would give to someone that is having a flare up that has helped you?A: As most of us know Crohn’s disease is such a complicated disease and is so vast. Every person is a little different and so treating flare-ups is sometimes a puzzle. What works for one person may not work for the next because the location of inflammation and severity ranges among other contributing factors. With that said the biggest “tip” I have would be to not do it alone. Connect with others who have been there or are there. Make sure you understand your limitations and go easy on yourself. Flare-ups suck but you don’t have to do it alone. Find good support online, see if there is a local support group, etc. It’s also extremely important to find a good doctor. If you’re not happy with the care you’re getting speak up! I had to learn the hard way to stand up for myself. Your health deserves it.Q: Are you currently taking any medication and if so, what is it? How does it impact you and what is your opinion on it?A: Yes, I am on medication. This year I was on remicade infusions every 7 weeks and methotrexate injections weekly. I stopped the methotrexate injections not too long ago, and so I am currently only on remicade. I felt my best (symptom wise) while doing both the remicade and methotrexate which was awesome, but the side-effects I was experiencing with methotexate wasn’t worth it to me so I stopped that. I have mixed feelings about medications, as I am sure most of us do. On one hand I dislike being on medication very much (who likes it?). The risk of potential problems always lingers in the back of my mind. However I understand the importance of medication in preventing future problems. Crohn’s disease is chronic with no known cure and it’s important to try and keep inflammation away to stave off irreversible damage and live a better life. It’s just one of those things I don’t like but know I have to do.Q: What tips can you give a young woman diagnosed with Crohn’s disease? In terms of carrying a relationship? Being in the working world?A: As far as relationships go I think a lot of women fear that a potential partner will find us or our symptoms gross or undesirable. We worry about things like surgery scars, an ostomy, fistulas, bathroom trips, etc., and what our significant other will think of that. Of course CD isn’t the most glamorous disease, but relationships are absolutely possible! It’s a matter of finding the right person, and they do exist out there. Let this be something that aids you in finding someone worthy of you. Not everyone is cut out to handle a person with a disease but…well, screw them! Be confident in who you are and show someone that there is so much to love about YOU. Your disease is just a part of what makes you who you are, but there are so many other sides to who you are to love. Yes, things get difficult at times and this certainly can put stress on a relationship. But it isn’t impossible. I was in a relationship once where my significant other set up a “bathroom” for me literally a few feet away from our bed where I could empty my ostomy bag because I was too weak to walk upstairs to where the bathroom was. That’s love! hahaAs far as the being in the working world - well, sometimes that’s a challenge. I had to adjust to that. I lost one of my jobs and was not able to work for a very long time. On top of that I’ve had to take so much time off because of hospitalizations for flare-ups. It’s sometimes not an easy thing which is all the more reason to have a team of medical professionals working with you to get you into long term remission. In my case it was a life long dream of mine to teach high school but the reality of my life for the past 5 + years has not allowed me to do so. Between surgeries, lengthy hospitalizations, and other factors it isn’t something I can do at the moment. I learned to adapt to something that is better suitable to me and now have a great job with the most amazing boss who works with me and my health. I am able to pick my working hours for the post part and adjust things according to my health. I work in a high end salon and really love it. It was never a part of my life plan and sort of fell into my lap, but it has been a blessing in disguise. So being creative and finding something that you can do is key, but I know it isn’t possible for everyone out there. I had definitely struggled with this in the past when I was out of work and lost health insurance and acquired a hefty amount of medical debt.Q: What is a funny moment that you can’t help but laugh and experienced because you have Crohns disease?A: Something that always makes me laugh is the first night of staff training at Camp Oasis Michigan. It has become tradition that on the first night we all sit around all tell our most embarrassing stories. We laugh so hard we cry and it really makes you realize that you are not alone. It’s great!Q: What is one of your favorite moments that you have experienced while working on “Inflamed and Untamed?”A: There have been many, but one of my most recent favorite moments came when a fan of mine (Vicky) made me a video to thank me for what I do and for helping her. It was so touching to know that I have helped her so much and that I have that kind of impact on people. I am still so amazed when I hear from others how much I have helped them. I also have a friend (Marisa) who reached out to me earlier in the year. When I first met her she couldn’t talk about her disease at all and she confided in me that my videos and blogs were the only ones she could find that she related to. After talking with her more and more and then sharing her story on my own blog she gained her voice. It helped give her the strength to start sharing and now she writes her own blog and helps others. The transformation is huge and it’s evidence that what I came here to do is working. I wanted to be a “voice” for others and help them find their own voice. Marisa is an example that I can make that possible and that’s pretty darn cool.