Gratitude Challenge: Day 8- Hero

I don’t think I could write a post that named everyone I felt was my hero.  I am constantly inspired to be a better person by my family, my inner circle of friends and my husband. For this purpose though, I’d like to take a little bit of time to talk about the people I have met the last few months.

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I’m honored and humbled to have been surrounded by these amazing and strong people at patient panels recently. At each panel, there were about 3 out of the 16-17 of us that had not had any surgery. Almost everyone else had had their colon removed and now had a jpouch or were in the process of having the surgeries. Everyone had their own ulcerative colitis story to tell, but more importantly, everyone was there because they wanted to make changes and improvements for other patients.  There were laughs, tears, hugs, debates, and a passion for improving the quality of care and treatments for this disease. There were friendships built, connections made, ideas sparked, and mostly…hope resurfaced. There are people missing from these pictures, some that weren’t at the conference and some I couldn’t get a selfie with but you all know who you are, and I’m so grateful for all of you.

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There’s only one colon in this picture, but a whole lot of love. 
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My favorite ninja, and my first IBD friend. 
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This girl is so sweet. 
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Hope Warrior-Sarah

Hi folks.  Can you believe it’s April? Thank the Lord tax season is about to be over and my work schedule will calm down a bit.  Sorry I haven’t been posting much lately. Unfortunately,  my real job has priority right now as it pays for the superwoman infusions I get every 8 weeks that keep me standing. Please forgive me for my absence, and welcome April’s Hope Warrior.
If you haven’t had a chance to connect with Sarah Choueiry of the Crohn’s journey foundation, you’re a fool. Jk. But really. She’s amazing and has such an awesome energy. Links to her social media accounts are below. Make sure to give her a follow and share some love and encouragement.

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Hi Sara! Thanks for sharing your story with us.

What type of chronic illness/autoimmune disease (s) do you live with?

​I live with an Inflammatory Bowel Disease called Crohn’s disease. ​

When was your diagnosis? How did you cope?

​I was diagnosed at ​14, struggling with symptoms since I was 12. I remember it took my mom threatening my regular doctor with a lawsuit if he did not send me to a specialist. My gen doctor was saying things initially that implied what was happening was in my head or part of becoming a teenager. I remember the day I stepped into the GI’s office, she looked at me and read my symptoms and said “you either have Crohn’s disease or ulcerative colitis, we need to have a colonoscopy.” I also remember that first colonoscopy because they put me in twilight. Let’s just say it scarred my memory!
When I was younger I did not cope, my parents did. They tried to alter my food to a soft, low residue (as recommended by the GI – aka white bread, white pasta, white everything ) and encourage me to take my pills without hounding me about it. I remember multiple trips a month to the emergency room and wishing that I did not always have to go to the bathroom every place I went. Besides that my memory of Crohn’s at the time I was diagnosed was limited to that.

What medications/treatments/surgeries/lifestyle changes have you gone through to manage your disease symptoms?

​I actually just had my first (and last) surgery (Feb 3) to remove what was supposed to be 10 cm of my small intestines, but actually ended up being 45 cm of my terminal ilium and part of my colon. Based on what the surgeon said, I no longer have any Crohn’s in my body! I hope not, after that surgery, was not easy for me.
Prior to that I switched GI’s about a year ago and so grateful I did. My new GI utilizes alternative medicine in her practice, from herbal medications to aid with calming the body to help reduce adrenal fatigue, creating teas just for my bodies needs at that time and making me tinctures just for my body.  ​She looks at the whole body and not just the symptoms. As for treatment, I was on humira in the beginning of 2013 and stopped some time in the fall because it did not appear to work anymore. I was then placed on entecort in the winter (2013), until surgery in Feb. I also did a couple rounds of Xifaxin while on the intro to Gaps diet and I felt amazing. The purpose of doing that was to help lower the collection of bad bacteria in my gut (SIBO = Small intestinal bacteria overgrowth), which I am convinced over 80% of people with IBD struggle with. I also altered my diet this past year and have been doing a variation of AIP with SCD and that has reduced the amount of discomfort and bloating I used to experience after meals immensely. I try to work on mindfulness every day through daily meditation, daily gratitude and yoga 3-5 days a week. I try to get outdoors as much as possible. Overall, I just try have fun in life and never forget the importance of socializing and being in my community of those I love. These are all the things I work on a daily basis and not easy to do, but worth it. (PS: I am horrible at grammar so forgive me 🙂 )

If you could tell yourself one thing looking back on your diagnosis, what would it be?

​I wish I would have told myself not to blindly listen to the doctor and explored diet. As a teen I was social, i worked out and I had fun BUT my diet was not the best. What I eat now is a total 180 from what I ate back then. I hate that the GI doctor told me that diet does nothing to help IBD. Just so disappointing. ​ ​Also that we were not encouraged to do things that helped reduce inflammation. ​Just a bummer and upsets me a lot at times. I do not believe diet is a cure in no means BUT it is a great way to help reduce inflammation and reduce your symptoms. I mean how can food we put in our body NOT impact how we feel!?

What do you do to relieve stress?

​I work on relieving stress daily. Not sure why but I tend to run more anxious. I think a lot of people with IBD do. Maybe from all the trauma we have been through?​ ​So this is something I try to focus on daily. I like to go on walks, yoga, spend time with family, talk to my close girlfriends, write in my journal, cook, go to the farmers market, sit at the beach and meditate. ​I would say those are my go to’s! So important to find what relieves your stress and do it as often as possible.

What inspires you?

​Hmm I would say the vision of a healthy me inspires me. I feel like I have opened my eyes the past couple years to a different world out there in terms of how to find happiness and health in my life and I have been working hard to get there. What inspires me are those who look at life with hope, love and determination, which makes up most of the people in my life. Another thing that inspires me are my close friends, parents and husband because they are so amazing, strong and beautiful inside and out, and to have them in my life inspires me to be the best person I can be.

Who do you turn to for hope or inspiration?

I​ turn to my IBD family I have created when I need hope or inspiration when it comes ​feeling discouraged about having IBD. It is comforting to have people who can relate to you, and just get you and say the right things to pick you up because they have been there!

Do you have a saying or quote or song that you turn to when you need to be uplifted?

​There are two things I do that help uplift me. First, non stop dance parties in my room while playing my hipster bbq radio station on pandora.
In terms of quotes, this helps me the most and I read it when I feel my life is out of my control and I need balance:
God grant me the serenity to accept things I cannot change,
The courage to change the things I can,
and the wisdom to know the difference. ​
What keeps you hopeful?

​My future, healthy self. ​

Rain drops on roses and whiskers on kittens. ..what are some of your favorite things when you are feeling bad?

​I would say it is all listed above. What I do when stressed and what I do to make me happy are all things I would call my coping mechanisms. The biggest one is to find daily gratitude on the shittest day. Last, be patient, compassionate and kind to yourself. Listen to how you speak to yourself in your head and question if that is what you would say to your daughter or mother if they had IBD. If not, then change that inner dialogue.

Social media accounts /website?

www.thecrohnsjourneyfoundation.org
http://instagram.com/crohnsjourney/
https://twitter.com/SarahChoueiry
http://www.facebook.com/MyJourneyWithCrohns

Remission

This girl is one of the most amazing people I have met in this community. Not only does she give all she’s got to fight her autoimmune diseases and everything that comes with it, she fights for everyone else that’s suffering. Through her #purpleproject care packages, caring tweets, and hilarious sense of humor, she’s always bringing a smile to someone’s face. I picked this post to share today to give a little insight as to what it’s like to have an autoimmune disease. “Remission is a sigh of relief, Remission is family, friends and never cancelling plans. Remission is Hope, a Future, Remission is smiles. Remission means normal.”
Kelly, thank you so much for all that you do and all that you fight for, and all the joy you bring to people who need it. I couldn’t be prouder to have you as part of my IBD family, and I know we’ll be in this fight together through Remission and beyond.
What is Remission to you?

#purpleproject

im not sure what Remission means. its not something im honestly all too familiar with. the last time i was in clinical Remission, was before i was diagnosed with crohns disease or ulcerative colitis. Image

i capitalize Remission for a number of reasons, but the main reason being i see it as a state, a royal majestic state. if you read much of my writing, im sure youre annoyed by my constant writing habit of writing in all under case, with very few exceptions.

as much as i hate to admit it, there is no way around “if”. “if i knew what being in Remission meant.. “if i had enough energy to finish my day as strong as i started it”.. i think every single day, i find myself finishing my “if” quandaries differently. “if” is one word i one delete from the language of chronic illness. its so limiting, so…

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