Inflamed and Untamed

I have to say that i’m super excited to announce the launch of my new YouTube channel, Sick Girl Beauty Vlog!

You’ll find lots of great stuff there about being a girl and living with a chronic illness. You can check out the YouTube channel here: http://www.youtube.com/user/SickGirlBeautyVlog and “like” the facebook page here: https://www.facebook.com/SickGirlBeautyVlog.

-Sara

I remember it like it were yesterday even though it happened when I was fourteen years old. I was diagnosed with ulcerative colitis (later found out it was actually Crohn’s disease) and from the moment I knew I had a disease I felt…different. 

I suppose I am not the only one who feels this way. There are moments in your life you can recall so easily, and then moments you no longer remember or have little recollection of. But the change I felt when I was diagnosed with a chronic disease, well that moment I can recall so vividly. It was like time moved in slow motion or had stopped and all I could think about was that I had a disease. 

(Me at the age I was diagnosed)

It was 1996 that I was given my diagnosis.  My mom and I left the doctors office and drove to the city I used to live in to pick up one of my best friends who lived on my old street. I was silent the entire ride there as time moved in slow motion. I was trying to show that it was no big deal and that this didn’t really affect me. Internally I was SCARED. I had a disease. Everything had changed. I, ME, Sara Danielle Ringer had a disease! As a teenage girl I was already so self-conscious and hyper-aware of everything about myself. Would people be scared of me? Would they think I was gross? What if they didn’t want to be my friend anymore? Was I going to die? What did this all mean? All I knew is from that moment on things changed.

I’ll never forget that car ride home and the change that happened inside of me. The change that happens when you go from a healthy person to someone who has a disease. 

-Sara

I will premier the first of 6 videos I am posting for World IBD Day! 

I am going to start it off with part 2 to one of your favorites: Things NOT to say to someone with IBD.  

Here is the schedule (hopefully) of videos for May 19th: 

12:00am - Things NOT to say to someone with IBD

8:00am - My story

11:00am - IBD in YOUR words part 1

4:00pm - Top 5 Myths about IBD

6:00pm - IBD Activists tell you why they do what they do. 

8:00pm - IBD in YOUR words part 2 

I will also be doing a give-away tomorrow and have some other stuff planned. 

I will be posting videos here to this blog as well as on my facebook fan page, YouTube channel, and twitter all day all about Crohn’s disease and ulcerative colitis in celebration of the day.

What do you guys have planned to do? This day is important. Not just because you and I have IBD, but it’s a day that recognizes a serious disease that affects so many people around the world. We need to talk about it, to spread accurate information, to bust myths, and to raise awareness. 

Perhaps this is the day you can tell someone about your disease? It’s the perfect time to take baby steps and start talking about it. To help you can even share one of my videos or another video that puts into words exactly what you are going through. 

Besides posting videos I plan to wear my Ask me about my Crohn’s disease hoodie and my Ask me about my j-pouch t-shirt and to show off my surgery scars for all to see. I hope all these things spark conversation about IBD with people who don’t know or are misinformed on what inflammatory bowel disease is. 

So whatcha gonna do, whatcha gonna do!? 

-Sara

Founders: Charis, Jackie, Me (Sara). Being 3 fierce females without colons! 

Yesterday was a very exciting day for me and 2 of my friends who are also IBD activists. We lauched a new website that “empowers girls of all ages to give IBD the finger”. Basically it’s a site for girls living with Crohn’s disease, ulcerative colitis, and ostomies to read stories and share their stories about overcoming all the negative things that our disease can makes us feel. It’s all about being confident and gaining back the self-esteem lost through surgery, side-effects of medication, etc. 

I can’t tell you how proud I am of this you guys, and I hope that you will check it out.  As you know last month I traveled to Chicago to meet up with some other fabulous girls who also write blogs, do videos, and have an organization. That weekend was what started our vision for this website and these past few days we made it become a reality. The best part of my weekend in Chicago is that all of us had only met online (except me and Jackie) and so I was meeting people I had never even known, but as soon as we started talking it was like we had been friends forever. I know that sounds all cheesy and girl scout like, but it’s true. 

These past 4 days Charis, Jackie, and I spent our time at Jackie’s house hardly ever taking breaks and just working on this website and talking. Oh, and laughing, so much laughing!  It’s a great feeling to be around other women who have been through a lot of what I have been through and also envision things the way I do. I want to spread all that cheesy girl scoutness to you! I want you to feel empowered to share your stories, overcome obstacles, and to maybe meet up with us in the future at a Girls With Guts event if we can make that happen. This disease is a hard one to battle and I did it alone in the past. I will never do it alone in the future and you don’t have to either. 

So anyway, after all that rambling I am going to give you the link to the website. Please check it out and continue to visit it because new stories will be posted all the time. http://www.girls-with-guts.com/ 

-Sara

So Thursday i’m leaving work talking to some of my friends and co-workers when I was asked to hang out Friday night and what was my response? “Can’t. I’m having dinner with a bunch of people with no colons.” It slipped out of my mouth without thinking until I was met with a response of laughter and funny looks. What? You guys don’t have dinner with people missing their guts? That was when I realized how fantastic and strange my life has become and I love it. 

Me (striped shirt) with some of my IBD friends from Camp Oasis.

I have more friends now with IBD than without, it’s just what I do. As I was having dinner last night with these new friends we discussed how important it is to meet people who have gone through this themselves. Your loved ones can try as hard as they can to support you but they will never truly understand the way someone else who has walked in your shoes does. 

I’m writing this to you.

The you that is reading this who doesn’t have real life friends with Crohn’s disease or ulcerative colitis.

I feel that it is so important that you seek these people out that I am writing this blog to go along with all the other times I have stressed just how much meeting other people with your disease is important. I feel this way because I went through YEARS of silence. Years where I isolated myself, where I felt embarrassed and misunderstood, and years where no one else got it. Once I finally met people like me it was such an amazing feeling that I just want to spread it to all of you who have no one to talk to. The internet is a great place for support, but having friends in real life is even better! 

So how do you do it? Yesterday’s dinner was as simple as facebook. I sought out all the Michigan people with j-pouches that I knew online and sent a facebook message to them. From there they sent facebook messages to their internet friends they knew in the area who have j-pouches and soon with some help we had a date and a place picked out and last night dinner was had with 4 people who had j-pouches and 2 people with ostomies. I went into it knowing only two of those people in real life beforehand (my fellow girls with guts Jackie and Charis) but I had never met any of the others except for being in contact online. And you guys, we had a GREAT time! Dinner started at 7:30pm and I didn’t get home until 1:00 in the morning because we had so much to talk about. It was great to laugh about things no one else would understand but someone else who has been there. It was great to share stories and compare similarities and differences and just talk to people who get it.

(I formed a friendship with these lovely ladies on the internet and then we decided to meet up. Instant friendship!) 

My weekend this weekend is all things IBD from visiting at the hospital, dinner with IBDer’s, working on some projects for the future, and bonding with 2 special ladies that are close to my heart. I understand that most people are not like me and don’t make it their life to be this involved, but you still can create friendships with others who have gone through this. Here are some ways I have met people with Crohn’s disease and ulcerative colitis. When I first had surgery I joined jpouch.org and looked for people who lived in my State and added them as friends on various social networks. I have joined support sites (CDSN, ihaveuc, crohnology, crohn’s forum, etc.) and looked for people in my area. I join facebook groups, twitter, etc. etc. etc. and seek out people who live near me. Then there are things I have done out in the real world like volunteering for Camp Oasis, participating in the CCFA events, joining GYGIG, looking for support groups at my hospital, and through all of that I have made so many friends with IBD that they heavily outweigh my friends without IBD. 

Right now my weekend rocks and it’s one of those times where I can take a step back and give myself a mental pat on the back for how far I have come. I am blessed to have some great friends in my life, to have this blog and share with you, and to (hopefully) inspire and educate others. It makes all the pain and suffering worthwhile to me and I just want to spread all this goodness to you. 

Leave me a comment and tell me if you have real life friends who have IBD. Do you want them? Are you unsure how to make them? 

-Sara

Last night I had the privilege of meeting one of the readers of this blog and his wife. How cool is that right? When I envision my “fans” I think of them coming from far off lands. But this reader does not come from a far off land at all, in fact he’s just down the street staying in the hospital where I have had most of my hospitalizations and where I had my 2 surgeries. We even have the same surgeon and I must say I am quite jealous he gets to spend time with some of my favorite nurses. ;P

The cool thing about meeting another person who has your disease is that you instantly have things to talk about. There is always a chance of meeting an occasional weirdo with IBD that you don’t click with, but usually sharing something so in common with someone else makes for instant friendship. Yay new friends!  It’s awkward meeting anyone for the first time because you wonder if your personalities will click, what they will be like, if you’ll have anything to talk about, etc., but i’ve never had that problem when meeting someone who has my disease. I spent over 3 hours last night at the hospital sharing stories about good doctors, bad doctors, stories about all sorts of things that we could had in common. I could have easily stayed longer and I’m sure we could have talked about so many other things but it got late and I had to go. It’s just another thing that makes me thankful I started writing this blog.

But this wasn’t what I came here to talk about today, I wanted to talk about his wife. What an amazing woman! One thing I have not talked about a lot here on this blog are the people who take care of us. Being a wife or a husband or a partner of someone with a chronic illness almost means you have that chronic illness yourself. Our disease affects those closest to us and they live with it too, just in a different way. 

Not everyone is cut out for the job. There are people who are not made to handle the stress of living with a sick person, but that doesn’t mean those good amazing people don’t exist. If you find one hug them and hold onto them tight, they are special. It was lovely seeing his wife by his side sharing their stories together, in this as a team. She has been there through the good and the bad and is working to become a social worker to help other patients who are sick and need assistance. Being a caretaker of us requires a lot.  It means spending time with us when we are in the hospital and taking care of the home, pets, and children (if you have them) while we are unable to. It means a whole lot of stress financially. It means a sometimes stressful sex life. It means being worried and scared about the health of the person you love and sometimes not feeling like you can talk about that because you feel as though you have to be the strong one. This doesn’t even begin to cover it, there is SO much that goes into being with someone with a chronic illness. It’s hard to make a relationship work when stress and emotions from both parties run high. We feel guilty and like burdens on those we love, and the people we love feel all sorts of things themselves. Sometimes things are said that are not meant to be said and it requires a lot of communication to make things work. 

I have had my share of both good and bad caretakers in the past and I sure know about the stress that illness puts on a relationship. I’m not sure about marriage but one day if someone is silly enough to want to spend their whole life with me then I hope it’s someone strong enough to love me in my good times and in my bad times.  I would like to thank all the parents, spouses, boyfriends, girlfriends, etc. who read my blog because someone you love has Crohn’s disease or ulcerative colitis. Your journey is a difficult one too and the love and care you provide for your loved ones is a gift. You are strong and wonderful people. 

-Sara

*Disclaimer: If you like what i’m posting and want to spread IBD awareness go for it! But please credit myself/this blog and always link back. Thanks! -Sara