Hope in the Internet

When I was going through my first major flare and found support on social media, it was incredible. There were so many supportive, understanding and encouraging people checking in on me, sharing their experiences and relating to what I was going through. I gained so much strength from some amazing people and their ability to care about strangers in the same predicament they were in or had been before. I loved opening my twitter app and checking the ibdfamily hashtag, and looking for others who had my same diagnosis under ulcerative colitis or autoimmune disease on instagram. I have formed some great relationships with some of those people and they are all very dear to me. That may be why I get so upset about seeing a change in the ibd community out here in the social media sphere.

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Every single person I know with IBD has a different treatment plan. Every single person. Some might be on the same medication but one doesn’t eat gluten. Some may use stress relief practices to prevent flares along with biologics to keep inflammation at bay. Some might be on steroids and following an SCD diet. And the list goes on.
So, why am I seeing so many attacks on people for their choice of treatment? A treatment should be between that individual and their medical professional.  Who am I to judge their choices?

Disclaimer* I’m not referring to when someone tells you “you must use walnut oil and you will be cured.” Forcing a cure on someone that was not asked for is rude. Particularly when it’s absurd and false and maybe more harmful than good.*

What I am referring to, however, is the “you can’t sit with us,” vibe going on when someone shares their story. Oh, you’re using a combination of meds and diet to treat your disease? Well, this is firmly a diet treatment only ibd community. Find another table to eat lunch at.

Or.

You’re not taking any medication? How dare you.  Take down your post about having Crohn’s disease and go be alone.

Who are we helping when we exclude others from the community because they follow a different line of treatment? This disease is lonely enough as it is, and there’s so much good and bad information out there, attacking others does not help anything. It makes people scared to talk about what’s going on. It takes us steps back instead of forward. 

I’m not saying everyone is like this. I have some great ibd family members who support and encourage and make me and others laugh and smile and they’re great. This has just been weighing on my mind a lot the more this community grows and I’d hate to see it turn into a negative attacking environment after it was such a haven for me when I found it 2 years ago.
I like to hope that it won’t become that way and that we can put these treatment differences aside and fight this disease together. We’re all fighting against the same enemy,  doesn’t help anyone to turn against each other in a right or wrong battle on the Internet Ibd community when it comes to sharing experiences.
There’s no reason to become mean and attacking for one persons choice of treatment when they are just sharing their story. And there’s no reason to push a form of treatment on someone just because they say they have a certain ailment.  This used to be a place of support and connection in the lonely world of invisible illness, and my hope this week is that it can stay that way for others who are desperately searching for someone who understands what they are going through, like I was when I first came here.
Please be kind, remember everyone is fighting a battle of some sort.

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Hope Warrior-Astrid

Please bear with me while the blog undergoes some updates. It’ll be back to being pretty, clean and organized soon!

It’s a brand new year, thank goodness. I had the greatest new years eve, this year surrounded by many of my favorite people. Last year I had to worry about being close to a bathroom, this year, I knew I would be okay. Last year, I was about to face the biggest health disaster of my life so far, and this year, I was laughing and smiling and crying tears of joy.  Totally different from last year. I’ve never been so grateful in my entire life. There are days I wake up and I honestly have a hard time believing that the treatment is working. But it is. I’m alive, I’m well, I’m happy, and I’m so, so blessed.

To kick off the new year, I’d like to share Astrid’s story. When I was at my lowest point with this disease, she was always leaving me encouraging messages and continues to cheer me on as I do well, and when I need  a little boost. She seems to do that for everyone that she sees struggling or battling an aggressive disease like IBD. If there were more people in the world that shared the same caring attitude that Astrid did, no one would ever feel alone. Do yourself a favor and check out her art in the links below.  Thanks for being you, Astrid, and for letting me share your story. Happy Warrior Wednesday!

 

Hello My name is Astrid and I am an IBD/ UC warrior.

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I was honoured when Jacklyn from FlareupHope asked to feature me as one of her Wednesday Warriors, I felt a sense of sisterhood with Jacklyn when we first bonded on IG. It was comforting to find others with IBD and sharing our stories make me feel less alone and scared.

What type of chronic illness/autoimmune disease (s) do you live with?
I was diagnosed with Mild to moderate Ulcerative Colitis

When was your diagnosis? How did you cope?
June 2013, The diagnostic was a relief as I needed to know how to proceed with a game plan.

What medications/treatments/surgeries/lifestyle changes have you gone through to manage your disease symptoms?
I have a very sensitive system to start and when I started taking Asacol, couple doses Salofolk following my doctor’s instructions, I felt more sick. I was only able to be on the medication for 2 weeks. My symptoms worsen and brought me to a full flare , that is when I went on a 5 weeks prednisone starting at 40mg to take the inflammation down.Because I didn’t want to rely on long term medication to maintain my everyday living, I worked really hard to find ways to manage my symptoms through diet change. I found the Paleo lifestyle a spring board to my healing regimen .

If you could tell yourself one thing looking back on your diagnosis, what would it be?
Don’t be afraid. This is a true test and will actually make you stronger . You are stronger than you think, you can heal your body, just listen to it.

What do you do to relieve stress?
Yoga, drawing and painting, walking in nature, bellydancing

You are an extremely talented artist. How long have you been creating? What inspires you?
Thank you for your compliment about my artistic abilities. I have loved creating as long as I could remember, silly putty was my favourite toy as a kid, I always had a pencil and paper with me, drawing was my thing, then I learned to paint in school. I am inspired by shapes, colours and texture from nature and love the uninhibited feeling in my children’s artwork.I love painting flowers.

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

What keeps you hopeful?
Meeting more and more IBD/ AI warriors who is dedicated to healing the body through a holistic approach. My first GI told me that I would be 1 in a million if I can control my UC with diet alone. I really should buy more lottery.

What are some of your coping mechanisms for dealing with stress?
Focusing on Breathing, seems so simple but I often forget to take deep breathes until I do yoga or bellydancing. Putting things in perspective when a stressful situation arise. Is my world really going to crumble? Is my family going to be harmed? Am I going to live through it? I used to jump at other people’s requests or demands. I would put their needs or wants first. Now, I prioritize my life better, my health and family always come first.

Rain drops on roses and whiskers on kittens. ..what are some of your favorite things?
A perfectly sharpened black drawing pencil, epsom salt bentonite clay bath, coconut anything, lavender, the smell of my children’s hair (when it’s cleanish ), a juicy grass fed steak

Social media accounts /website?
http://www.healmeinthekitchen.com
www.astridfoxartanddesigns.blogspot.com
IG: @astridfox_art

Biggest change you’ve made since diagnosis? I am better at managing stress now and have found a positive outlook in life. I have learned to calm my fight or flight habit and start living life with different perspective.
I have learned to adapted to evolving healing eating plans as my body changes. I started with going grain-free right when I was on my short course of prednisone, , then I embraced the Paleo lifestyle, now I have fine tuned it with AIP ( Autoimmune Protocol ) with low FODMAP. I cook 90% o f my foods, spend 80% of my waking time in the kitchen. I read labels because my wellbeing depends on it. I almost never eat out but you can often spot me with my thermal flask of bone broth at restaurants while out with my family.

Best thing about having this disease?
Having to learn how to face my fears and dig deep into my darkest places, I have become the person I have always want to be, I have learned to live with less fear and without regrets. (I love this-J)

What have you accomplished that you are most proud of?
M y greatest accomplishment besides being a parent is building a business from ground up. 17 years ago, My husband and I took our passion, along with our inexperiences and decided to start our own business. When we opened our retail fashion boutique in 1998, apparently our neighbouring business ,at that time, thought that we ( our business) would only last a couple of months. That neighbouring business has since sold and change a couple of hands over and we are still the longest standing business with the same owner in the hood. Being entrepreneurs isn’t easy but we stood the test of time with our boutique/cafe, Global Atomic Designs and Black Echo Coffee, in the fashion district of downtown Vancouver, Canada. We having survived the economically ups and downs throughout the years and continue to push trend boundaries .We have earned international recognition in what we do like making into the NY Times 36 hours guide.

Astrid is a whole food advocate, recipe developer, ferment fanatic, mother, wife, artist and entrepreneur. When she is not playing kitchen scientist, she is most likely plotting her next painting move from her yoga mat. Carving time to fill her different hats can be challenging, but she finds joy in balancing a holistic lifestyle to support her continuing battle with Ulcerative Colitis. She owns a fashion boutique/ cafe www.globalatomic.com and www.blackechocoffee.com in downtown Vancouver, Canada with her husband.

You can also follow her creative art progress on http://instagram.com/astridfox_art