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IBD Social Circle

Recap and Looking Forward

This is one of those catching you up, what the heck has Christy been up to sorts of posts.

Looking Back
I think of 2015 as the year of perseverance. It was a mix of really amazing opportunities, adventures of all sorts and some moments that were super challenging.

Bit of a Bump
2015 started out with a surgery to have my gallbladder removed by a new-to-me surgeon. Up until then I had been really spoiled with having one surgeon who did all my work for the last twenty- ish years. Thankfully my Gastro referred a very skilled person and all went well.

Got Awesome
Next came the 2015 #IBDSocialCircle. This was my first IBD conference where I would get to meet other advocates. I was super excited and didn’t know quite what to expect. I knew Sara Ringer would be there and that was it. I met the very nicest IBD Advocates, did my best to live tweet an IBD Social Circle Round Table, got a sneak peek at upcoming endeavors designed to improve the lives of patients and collaborate with fellow advocates during an all day meeting.  I was in Gastro Lady Heaven!

Got Exciting
As soon as I got home from the IBD Conference Where my Wildest IBD Dreams Came True – I dove head first into buying a house and moving.  I seriously put my luggage and IBD Conference swag into a box, taped it shut and kept going until June.

Challenging
So we have this house and are pretty excited to have a cozy little place just right for us where we could be Zen with our offspring.  We went in knowing there was some yard work and painting to do. And we were cool with that, as long as the house was sound. It would be a fun adventure. That notion lasted for about a minute before the peace and opportunity for transformation that was our house began to resemble that 1986 movie, Money Pit, with Tom Hanks and Shelley Long. Repairs – bugs- wilderness- rodents- pluming – broken major appliance- tenting and gassing, multiple roof issues, water damage, interior wall repairs and on. So far home ownership has been one adventure after another.

Secondary Disease
So I have Meniere’s Disease. It’s not fun. I did a post about it to give you an idea. About a month after we moved into our home, it decided to be really active. Meniere’s is quite ambushy and took some serious trial and error to figure out how to get some relief. I would like to tell you things are better. They just aren’t. I take sedating meds which somewhat calm down my ears before doing fun things and I keep food down because of sublingual anti nausea meds. Thanks to continuous tinnitus, I don’t have silence anymore. My hearing drops out for short periods of time in one and sometimes both ears frequently enough for me to mention it to you. It’s an ongoing process.

Crohn’s Disease
I see my Gastro on the regular, like ya do, and he reminds me it’s been a minute since we’ve done a pill cam. So I do that and it’s super amazing because the geek in me loves all that medical science working its way through. Plus it was one of the new systems that don’t use all the stickers but a large sensor plate worn belt style. (Future post about that) My pictures came out clean, my blood work came back lovely. The words ‘It looks like you are in REMISSION.’ were spoken. My Gastro brings up the idea of going off meds. And so that’s what we do. I am still amazed and really grateful about every bit of this last paragraph.

Busy
Otherwise known as ‘Mamas going back to school!’ With both kids stable and at their school during the day, it was time for me to go back and work on my education. I was super excited and optimistic that this time it would all work out. I was older, my health was more stable and with that pesky gall bladder out and an Ostomy on my team this go around, college was really going to happen for me. And it did. But the start wasn’t as smooth as I would have hoped. Those credits I managed to earn twenty years ago didn’t transfer. So I was starting over from scratch. At first I was pretty bummed but then I decided it would be okay. After all, I’m going back to gain skills to be an even better advocate. Psychology, public speaking, writing and more will help me be better at what I enjoy.  As long as I keep my goals up front, I can’t be bummed about that.

Recovery aka Holidays
Holidays marked the end of my first term back in school. I was proud to earn a solid B in Psychology, consistently work on home repairs with The Husband, and have time to relax with festive tree trimming and cookie making. Much needed time off with my wee family and Grandparents down for a visit was the perfect ending to a rollercoaster year.

Looking Forward to 2016
*First of all, I’ve got the hang of this college thing and I love it. My schedule works around my children’s time in class and I still keep my weekly volunteer time at their school. I’m taking classes that apply to my advocacy love and dream job which feels really good.

*Our hard work has paid off. The house is stable enough where we can divert some of our resources towards yard work – which I love.

*Back to Creating
With all that work going on there was limited time for fun stuff. It felt like we were always coming home to another thing to fix. Now it looks like the road is becoming more even. I’m getting back into the swing of being creative again. I’ve begun to crochet a little, write more and hopefully paint something that isn’t an interior wall.

Part of that goodness is that I’m back to sharing with you, but in a more rounded, balanced way. Sometimes I feel like I don’t have a lot of new IBD related things to say. But being a Crohn’s Disease patient and Ostomate, my everyday life is very relevant. There are things I do now I never dreamed I would ever be able to do when I was sick. And while I am well now, I know Crohn’s Disease could come back tomorrow and do its best to take all this goodness away. I am very aware of that.
And so to fit that intent I have a new page look which will continue to evolve. If you like it, thank my husband. He really listened to what I wanted and is making that happen in real life. He really is a sweetheart.

Thank you for reading and catching up on my 2015 recap. It’s amazing to look back on a year of change and learn from those experiences. I am eager to see what 2016 has in store.

IBD Social Circle Whirlwind

Wow has life been a bit of a whirlwind. It was only a couple weeks ago that I attended the IBD Social Circle Summit. It was an amazing, uplifting and inspiring experience. I got to meet IBD advocates that I follow and admire for their educating and bare honesty. I tweeted at a live IBD Round Table which was amazing! Then there was a day of focus groups with best care for the IBD community in mind. And the finest topper of all was the honor of attending the premier of Ryan Stevens’ documentary Swimming with Courage & Crohn’s. If you have not had the opportunity to view this documentary, please do.

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Frank, Marisa, Amber, Ryan, Samantha, Sara and Dan. Panelists for the Swimming with Courage & Crohn’s documentary.

About a year ago on Lake Erie Swim 4 IBD Day and into the night I remember sequestering myself away with my lap top to capture any type of update and follow Sara Ringer’s posts as Ryan captivated us all in his grueling super human battle across Lake Erie to raise awareness for Crohn’s Disease and Ulcerative Colitis. #XErie4IBD. I sat there with my heart in my throat part cheering Ryan on, part nervous for his safety, a large part really proud. With that bystanders experience as reference I listened as panelists added further insight that served to paint a more vibrant picture of the days events. Ryan was already a beacon of hope within the community before the documentary. To see in stark detail was humbling, empowering, and powerful. The thoughtful preparation, determination, courage, and grit to do what Ryan did all to spread awareness about a disease and to give hope to others. WOW!

Zero dry eyes.

Janssen did a top job of reflecting truth onto film. Even more so, Janssen understood. You can’t make that kind of experience come alive if you stand separate from the cause. To see Ryan portrayed as the strong, raw, honest Crohn’s Disease fighter that he is, really mattered. IBD patients deserve that kind of dignity and respect. Janssen did that.

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IBD Family Washington D. C.

 

The next morning I hopped on over to the DDW and experienced its Gastro Health Mecca. A landscape of booths laid out as far as the eye can see, filled with people excited to tell you about their products.

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Next time I’m either hugging or voguing this thing. My photographer strongly discouraged such high-jinks. Darn!
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The future of Gastro care spread below. I can feel the excitement. Woo Hoo!

 

All too soon it was time to head home.

Quite a wonderful adventure for sure. One that was a dream come true on multiple fronts.

The whirlwind picked up again as soon as I got home with child shenanigans, volunteerism, visiting relatives and home buying. Eek! We’re buying a home!

Here I sit typing to you; existing half in boxes. Tomorrow I work as a team with my Hubby to transport life and family to the next phase of our adventure with as little chaos as possible.

If it fits, it ships...or something like that. Glad to be doing this for the last time in a long time.
If it fits, it ships…or something like that. Glad to be doing this for the last time in a long time.

And the whirlwind continues.

Because college is next!

#IBDSocialCircle ~ Tourist by Day

This is going to be a two part thing as long posts don’t really get read and the two halves of my day were so vastly different.  I went from tourist in a new town with a new friend to attending my first in person IBD Social Circle web chat.  I want to give proper attention to each.  So here’s how the day began…..

Day one I got to the Hyatt Regency Capitol Hill ahead of everyone else and was treated with a spectacular parade. It pays to get where you’re going a bit early sometimes.

Day two was when the rest of the #IBDSocialCircle participants arrived. The Welcome Reception was scheduled in the evening which gave almost an entire day to entertain myself. Fortunately Jen of Chronic-Crohns arrived early as well. Stephanie of Tonic introduced us via email (because she is friendly and awesome like that) and Jen and I hit it off right away. Jen has a Facebook page called Crohnic-Crohns where she shares her experience with abscesses, IBD and Ostomies. Such an easy going and funny lady to hang around with. So there we were, two IBD Explorers with map in hand, we took off on foot as D.C. has so many cool things to see that happen to be really close together.

Buckle up kids it’s Slide Show Time!!
I promise this is the one and only slide show for this IBD Social Circle ~ Washington D.C. adventure series.  Mostly because after this the tempo picked up and I really started soaking in the moments….and forgot to take pictures.  In fact, I wish I had taken more.  So together let’s enjoy some of the photos I actually did take.

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We saw the capital as it was undergoing some renovation.  Nice scaffolding.

 

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United States Botanic Garden Conservatory was like stepping into a tropical wonderland.

 

Fun fountains, statues and architecture.
Fun fountains, statues and architecture.  Is that a secret Hogsmeade shop?!

 

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National Air and Space Museum where we got our flight history and NASA fan girl action on!  Running around like kids in a candy shop walking through and taking pictures of space shuttle living quarters and checking out all things rockets, shuttles and communications.  Squee!!

 

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Washington Monument. This is what it looks like when you lay down and take a photo looking up. Because of course that is the very best way to appreciate the magnitude of this structure.  Cool stillness on your back slowing you down from the walk, bright sky against the dual colored stones climbing their way straight into the clouds.  Magic.

 

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Lincoln Memorial Reflecting Pool where history took a steep curve towards equality. This was constructed the year my Grandfather was born. So many great things can happen in the lifespan of a good man.

After all this fun Jen and I got lost a little on the way back.  In the end we arrived in perfect time to get freshened up, grab our supplies and head down to attend the evenings Welcome Reception.  I was about to meet the tip top of advocate awesome in the form of bloggers, vloggers, law makers and dedicated IBD supporters.  Excited, a little nervous and really hoping I would do a great job were the thoughts filling my head as I walked towards the group standing just outside the conference room.  Here we go!

Look for part two to cover the evenings events.

Glad To Be Back

Hello my lovelies! I’m glad to be back so I can share all the good nuggets with you. I spent most of the first day back napping, recovering and just starting to get caught up with everyone. What an exciting whirl wind of IBD Family and all things new and better for the IBD community. I am super excited for the future and can’t wait to share my experiences with you. I had the best time at the ‪#‎IBDSocialCircle‬ and exploring ‪#‎DDW‬ convention. There are just so many cool things to fill you in on that I will be breaking it up into different posts. But I wanted to first off say a thank you to Janssen and Tonic for making this trip possible. From food we could eat to making sure we got to our events, staying up and visiting late into the night and every tiny thing in between; we felt cared for like out of town family.

I also want to assure you that I kept my fan girling to a minimum as to not scare away the super awesome advocates that surrounded me at every turn. You would be proud of the self control.

And because this event was held in Washington D. C. I got to explore some of our nations great historical treasures with my new Canadian friend Jen of Crohnic-Crohns. Such a sweet heart. You should really go check out her page.

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Jen of Crohnic-Crohns in front of the Embassy of Canada. Check out those beautiful flags, Eh?

*Disclaimer~ This snap shot was taken later in the Washington D.C. IBD Blogger Awesome Adventure. But it was the only photo I took of the Lovely Jen as I was living in the moment so much I didn’t capture as many images as I later wished I had.

**Note to self: Must take WAY more pictures next time!

IBD Social Circle Summit Day 1

Today started early with a trip to the airport and kisses good bye to my husband and wee people. Five hours later I arrived in Washington D.C. for the IBD Social Circle Summit put on by Janssen Biotech. My sweetheart driver Muhammad, who kept calling me Ma’am, was delightful to chat with. D. C. traffic was certainly exciting. I was immensely grateful that he was driving, a dazzling conversationalist and was thoughtful in pointing out historical landmarks in our nation’s capital along the way.

At the hotel I was greeted right away by Stephanie of Tonic Life Communications who coordinated everything so seamlessly in advance and anticipated every question I needed to make my first trip to the East Coast a smooth one. This was a blessing and much appreciated as one of my not-so-super powers is getting hopelessly lost. And because I’ve never been farther East than a layover in Denver on the way to Houston, I needed all the help I could get!  So that on its own was a great big bucket of awesome!

Next I was off to my room to freshen up with plans to discover something to eat. While there I heard bagpipe music from the street below. Food can wait; I’m off to check that out! Turns out the IBD Summit coincides with the annual pipes and drums memorial for police officers who have fallen the previous year. It was a lovely tribute that felt more like a celebration. The ground shook like thunder and the air vibrated with the magic of bagpipes and drums. You could physically feel the music move through you. I am so glad I went. People were visiting with each other, perfect strangers striking up conversation. It felt like a festival. I heard from historical tourists, someone came from Ohio to visit family, another in town for business. Of course, I shared that I was here for the summit and shared what IBD was. One person knew what I was talking about and the rest were caught up to speed. Lots of fun with friendly people who were game for taking part of their day to visit and share a parade with each other.

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Lovely.

Tomorrow I get to meet some of the IBD bloggers I follow and look up to in person. These intelligent, funny, creative people that engage and educate. IBD Family. WOW!

Now don’t forget, tomorrow is the IBD Social Circle web chat “Preparing for Procedures and Surgery”.  So please sign up and participate if you can.  Don’t miss out.

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What a perfect way to start this kick off to Digestive Disease Week. I look forward to tomorrow when the official IBD Social Circle Summit begins, and can’t wait to share with you.

Until then.

Be well my Sweet Bolognas

*Janssen paid for my travel expenses for the Summit.  All thoughts and opinions expressed here are my own.*

Digestive Disease Week 2015

So I’ve got exciting news.  Thanks to Sara of Inflamed and Untamed for suggesting me, I am attending the IBD Social Circle Summit as part of Digestive Disease Week!

It’s like being handed a golden ticket to Willy Wonka’s Chocolate Factory.

Heck Yes!

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The IBD Social Circle Summit has been put on by Janssen Biotech.  It’s a way for pharmaceutical, medical and patient advocates to get together to focus efforts towards awareness and education.  These are the brains and souls that dedicate themselves to solve the ultimate IBD puzzle.  And they do it with humor, accuracy and passion.  I feel both thrilled as can be and out of my element in the most deliriously joyful way.  Most of all so honored just to be able to attend.

Last year I watched in GI Fan Girl appreciation as some of my favorite in the IBD community got together to share their knowledge.  It was hopeful as a patient to see the process in which minds of varying disciplines get together for a common goal.

I plan to document my experiences and share with you along the way.  So follow my Crohnie Bologna IBD Facebook Page and Twitter @CrohnieBologna.  You can also follow using the hashtag #DDW15.  The schedule feels like a magical whirlwind of gastro health awesomeness.  It begins with a web chat on Preparing for Procedures and Surgery and ends with the Documentary Premiere of Swimming with Courage and Crohn’s, chronicling Crohn’s patient Ryan Steven’s swim across Lake Erie in an effort to raise awareness for IBD.

To join in on the fun you can register to participate in the IBD Social Circle “Preparing for Procedures & Surgery” Web Chat.

In the spirit of full disclosure, Janssen Biotech, Inc. paid for my travel expenses for the summit. However, all thoughts and opinions expressed are my own.  Which is freeing.  I can speak honestly and not feel as though I am there to endorse any company or product.  I can just be myself which will likely include a contained amount of fan girling, geeking out at the uber smart gastros and most of all meeting people within my IBD family.

I can hardly wait.