Hope Warrior-Jordan Wilson

Featured by flareuphope

I was lucky enough to meet Jordan in person at an Ulcerative Colitis Patient Panel hosted by Pfizer about a year ago. He was one of the first patients with a jpouch that I had ever met in person, and he gave me hope that if I ever had to take that route for treatment, my life wouldn’t be over. Instead of letting the diagnosis of Ulcerative Colitis shatter his life, he’s taken this new lifestyle as a second chance to enjoy as much as possible. Thanks for taking the time to answer a few questions and share your story, Jordan!

When were you diagnosed with Ulcerative Colitis?

I was diagnosed with Ulcerative Colitis in June of 2010.

What do you remember most about that day? Looking back, if you could tell yourself one thing about the diagnosis you were about to receive, what would it be?

I remember waking up from the colonoscopy and having my mom in the recovery room with me. I was still pretty out of it but my doctor said he could tell right away it was UC. I was pretty cloudy for most of the afternoon and I don’t think the severity of the diagnosis really sunk in until the follow up appointment. Looking back, if I could tell myself one thing about the diagnosis, it would probably be to make sure to listen to my body. There were times where I was so consumed with having the right mental attitude about it that sometimes I would ignore the obvious physical pain I’d be in.

I love that you hashtag some of your posts #lifeisa10. Will you share a bit about what life is like with a jpouch? What other medications/treatments/surgeries/lifestyle changes have you gone through to manage your disease symptoms?

Yeah that’s the hashtag I thought of using for all of my Instagram posts! It just sums up how I feel now. I’ve been living with a healthy j-pouch since the spring of 2013. It really has given me a second lease on life. I was in real bad shape before my surgeries. Of course, life is different now, and as cliche as it sounds, it is a “new normal”. But it’s so much better than being sick. I went through the catalog of medication before my surgeries, pills, enemas, infusions, suppositories, etc. Now the only thing I take is a multi-vitamin and a probiotic. A lot different from the days of 18-20 pills a day. I also pay attention to my diet and exercise, eating pretty clean 6 days a week or so and working out just about every day, at least once a day. The mental benefits are just as important as the physical benefits I’ve found.

By the way, congratulations on making the homepage for the Crohn’s and Colitis Foundation! Love what you are doing to raise money for the foundation. I really can’t pick between you or Will riding shirtless, so I’m donating to both campaigns. Either way, so fun! What is your favorite part about being an IBD Advocate?

Thank you! Yeah this whole riding shirtless bet has given me a ton of new motivation to stay in shape! We’re humbled to have been chosen as the national faces of the spin4 crohn’s & colitis cures event for the Crohn’s and Colitis Foundation. My favorite part of being an IBD advocate is the opportunity to travel while helping others. I’ve been lucky enough to go to Washington, D.C., Fort Lauderdale, Orlando, New York, San Francisco and Atlanta while sharing my story and contributing to different advocacy projects. I’ve made it my mission to be a voice of positivity among IBD advocates because I feel there is a lot of negativity out there, especially in the online communities. I didn’t have anyone I could talk to who had gone through what I went through, so I want to be that guy people can turn to. I feel like if we can use our past experiences to help someone, it’s our duty to do so.

What are some of your other favorite things to do outside of IBD awareness and education?

(favorite books, music, podcasts, hobbies, activities)

Outside of creating IBD awareness I enjoy my “day job” which is a Realtor in Orange County, California. Another opportunity for me to help people. My hobbies and passions include fitness, reading (I’m in a book club and read a new book each month), riding my motorcycle, traveling, cooking (more importantly, eating!), and just spending time with friends.

What is something you have accomplished that you are most proud of?

I can think of two accomplishments right off the top of my head that I feel most proud of. I was able to study for and successfully pass the state real estate exam from a hospital bed. It was during the 5 month period of my j-pouch surgeries when I had some downtime and was able to study and take the necessary tests. The second thing is all the advocacy work I’ve been able to accomplish just since September of 2016. It’s given me a renewed sense of purpose and I’m really passionate about using my experience to help others.

Who inspires you?

Someone that inspires me is my friend/mentor Jay O’Brien. I’ve known him for about 16-17 years. He recruited me to work with him in the real estate office. The way he handles his business inspires me to strive to provide the best experience possible for my clients. Not only that, he’s also one of the most generous and selfless people I’ve ever met. He continually does things for others, not expecting anything in return or recognition.

What are some of your coping mechanisms for dealing with stress?

I’m not sure if I have any coping mechanisms for stress. I think I’m pretty lucky that I’ve trained myself to be more patient and calm these days. I do a pretty good job of letting things roll off my back and not taking too much too seriously. I use exercise as a way of meditation. Whether it’s weightlifting or indoor cycling, I use that time to clear my head and recharge.

What has been the best thing that has happened so far that would not have happened if you did not have IBD?

Other than meeting other amazing advocates like you? Honestly, the people I’ve met through my advocacy work have been absolutely incredible. Being introduced to the IBD community has been one of my life’s highlights.

What keeps you hopeful?

What keeps me hopeful is the thought that the best is yet to come. So far things are getting better and better and I can’t wait to see where things are headed.

Do you have a favorite saying, quote, mantra or song that you turn to when you need to flip your mood around?

Life is a 10! I am always reminding myself that it could always be worse. Even after all the pain and discomfort I’ve been through, it’s nothing compared to what others are going through.

Okay, time for rapid fire this or that:

Chocolate or Vanilla?Vanilla

Coffee or tea?Neither. Does Red Bull qualify?

Hot or cold?Cold

Sweet or sour?Sour

Charmin or Cottonelle?Cottonelle, I’m all about the little ridges

Dog or cat?Dog

Running or walking? Or Cycling? Walking and Cycling 🙂

Road trip vacation or resort vacation?Resort vacation

Android or iPhone?iPhone

Sunshine or rainy day?Sunshine

Dinner out at a restaurant or a nice home cooked meal? Dinner out

Doing the dishes or doing laundry? Laundry

Comedy or horror?Comedy

Fiction or nonfiction?Fiction

Cake or pie? Cake

Final question:

You’re in the waiting room about to leave after a follow up visit with your GI. Someone else is in the waiting room and they were just diagnosed with a chronic disease. They catch your eye and then ask you “How do I get through this?”

What do you say?

In this situation I’d give them a couple pieces of advice. First thing I’d say is to keep your sense of humor through the journey. If you don’t learn to laugh (at yourself, especially) you’re going to lose your mind. The second piece of advice I’d give is to be your own advocate. Learn as much as you can, take your health into your own hands, and never stop asking questions. You’re going to get through this.

Make Sure to Say hello to Jordan and follow his awesome advocate work on his social media accounts below.

Facebook:

https://www.facebook.com/jordanmichaelwilson

Instagram:

@The_Real_JMW

Snapchat:

@TheRealJMW

Twitter:

@TheRealJMW

How to Enjoy Your Wedding Day When You Have A Chronic Illness

Posted on June 4, 2017June 2, 2017 by flareuphope

I’ve received a lot of requests for this post over the last year, and figured our first anniversary would be a good time to answer those questions. Here are my top 5 tips for enjoying your wedding day despite a chronic illness.

Make time for yourself.
Eaton Rapids Wedding Photography – Millers Dairy Farm – Phil Black Photography

The morning of our wedding was absolutely gorgeous. I spent some time alone in the morning before everyone arrived at the house doing yoga, sipping on a cup of coffee and writing a letter to my soon to be husband. (Instead of sand or candles, we decided to write each other a letter and to put it in a box together to open on our first anniversary. Every anniversary after we will write another letter and open the one from the year before.) I watched the sun rise over the river, wrote in my journal a bit and basically gave myself a few moments to just be.

Eaton Rapids Wedding Photography - Millers Dairy Farm - Phil Black Photography — Eaton Rapids Wedding Photography – Millers Dairy Farm – Phil Black Photography

I knew that if this short hour to myself would likely be my only alone time, and I savored those moments and gave my body some well deserved self care and relaxation. It really helped me get present for the rest of the day and to make sure I was focusing on what really mattered. This step is important throughout the wedding planning process also. It can be so challenging not to get wrapped up in the pinterest boards and the details and trying to make everyone else happy that you forget about yourself and to pay attention to what you need. When you’re fighting against your body, you have to listen to what it says while it is whispering instead of waiting until it is screaming at you to stop and make a change. Make it a habit to make time for yourself.

2. Surround yourself with people who lift you up.

Ain’t nobody got time for negativity. I’m so blessed to have the most amazing tribe of girlfriends who all bring their own unique character traits to the table. My girls balanced me, kept me grounded, supported me and kept me smiling. My husband’s guys kept me laughing and everyone was troupers as it started to rain moments before we were about to walk down the aisle.

My family that day was amazing. My dad particularly went above and beyond to make sure everything was as it should be and that everyone was having a great time. We were overwhelmed by the love and generosity by every guest and were surrounded by love all day.

I know that not everyone has this type of environment or support systems. If this is the case, consider who you really want to be surrounded with when you make the biggest promise of your life. What kind of energy do you want to bring to your day? Physical energy is flaky with autoimmune disease, and I find that when I’m surrounded by people who are at a lower vibration (or who don’t enjoy life), I lose zest.

Invite the people who bring light in your life. Make them a part of it. Don’t feel guilty if you don’t invite your coworkers dog-sitter or your mom’s cousin’s kids that you haven’t met, ever. This is about you and your husband and who you love, and who loves you best. You won’t regret surrounding yourself with awesome people, you might regret inviting Debbie Downer.

3. Put someone else in charge on the day of.

Whether you hire someone, loop in a friend or family member, or get the DJ to take over, get someone to take the lead on the big day.

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My best friend from high school was my hostess with the mostess, and even while pregnant she took charge and smiled the whole time. My cousins were in charge of pouring champagne, and my stepsister served drinks with the help of her friend. My in-laws were in charge of clean up the next day. “People want to help you, and you should let them,” was the persistent advice of my future mother in law.

This was probably the hardest advice that I had to take. I’m big on “No thanks, I’m good,” and can handle everything on my own. I know I can handle it, but sometimes you just shouldn’t have to. Particularly on days like today where the celebration is about you. Pass the torch and let someone else take over making sure the centerpieces are all set and that the guys have their boutonnieres and to make the decision on whether to continue the ceremony in the rain or take an hour to move everyone inside. This is your time to enjoy all the things you created, not to think or stress.

4. Whoooosahhhhhh

Breathe. And be grateful.

Not everything is going to go exactly as you planned.

And those moments are the best ones. Let go of expectation, and just enjoy every moment for what it’s worth. We had the most relaxing morning at my home getting ready, and all of a sudden I was supposed to meet my future husband for our first look in 15 minutes and my makeup wasn’t done and I wasn’t dressed and we had taken zero bridal party pictures and everyone was asking if I was okay. I felt myself rushing and getting tied up in freaking out for a minute and then took a breath and remembered that the show can’t start without us. We’ll have plenty of opportunities for pictures, for everything little. We’re getting married today. I’m alive. Nothing else really matters. So I took a deep breath, let it go, and went back to enjoying myself.

Things are going to happen that you don’t expect or maybe didn’t want to happen. But in the end, these moments will be the best and you’ll look back on them again and again throughout the years.

You might cut your foot open 5 minutes after wearing your shoes and have to change into flip flops right before you walk down the aisle, but at least you’re comfortable.

It might be sunny until the moment you have to walk down the aisle and then it may decide to rain. But you’ll get the greatest picture with your dad in an umbrella.

You might not get all of the pinterest-worthy golden hour photos you anticipated, but you’ll have some hilarious moments with the bridal party as you are stuck in an old ice cream parlor.

The best man might swear in his speech and it may go on for a while, but you will laugh and it will be one of your favorite memories and something that will be talked about forever.

The flower girl and ring bearer might not want to walk down the aisle. But they are absolutely adorable so it doesn’t matter.

The dog might follow you everywhere all night and even interrupt the daddy-daughter dance, but you’d rather have him there with you than not at all.

Those unplanned, unintentional moments are the best.

5. Pay attention to your hands.

Weird advice, I know, but hear me out.

You will look at your hands every day of the rest of your life. Likely they’ll now have a ring on the left hand to help you remember this day, but if you focus on your hands, you’ll remember more of the moments.

With chronic illness, our hands often go through a lot. They are constantly being washed to prevent infection, sometimes they are being poked with an IV for medications, and sometimes they are squeezing or clenching in pain. Our hands hold a lot of memories. Having good ones when you have to go through something tough can make it a little easier. Here are some of my favorite memories:

I think about the mimosa I held and the piece of turkey my future cousin-in law handed me while my makeup was getting done.

My hand tapped on my future husband’s shoulder when we met for our first look.

My hand gripped by bouquet that was made by my cousin, wrapped with my great grandmothers brooch she wore to her wedding. My fingers touched my necklace that was made from diamonds from my other great grandmothers ring.

My hand linked through my dad’s arm as he walked me down the aisle.

My hands met my husbands as we stood in rain, looked into each others eyes and stated our vows.

My hands were lifted as we were married and ran together down the aisle out of the rain.

My hands wrapped around my friends and family as we laughed and took pictures.

My hand was covered with my husbands as we cut our cake.

My hand held a glass of champagne as we said cheers, and held the hands of others as we prayed.

My hands wiped away tears as both sets of my grandparents danced as they shared the dance for the “longest married couple.”

My hands held more hands as we all danced and laughed and danced.

And most importantly, my hands were held, by my best friend, my forever partner in life

and were promised they’d always have another to hold.

My World IBD Day/Birthday Wish

Posted on May 19, 2017 by flareuphope

My birthday wish this year is not for a cure for IBD.

This year, I’m asking for something that might be much harder to accomplish: better care for patients.

My wish is that no one ever wakes up post colonoscopy to be told:

“You have a disease with no cure, come back in two weeks.”

Instead, I wish for an IBD army of advocates to be in every hospital, with arsenals of accurate information and resources they are ready to provide to that new patient so they are filled with hope instead of fear. Let’s avoid the Doctor Google search and arm patients with the facts right from the start.

I wish for mental health care to become a standard component of the IBD treatment plan. When a patient feels isolated, lonely and full of anxiety at the thought of even leaving the house, it is hard to feel better or to heal at all. I wish we would teach coping skills and connect patients with mentors who can relate to their experiences. We must have the tools to fight IBD together and find ways to work, have relationships and (most importantly) enjoy life again.

I wish for patients to be seen as people instead of dollar signs and numbers. I want to break the communication barrier between the front of the office, the patient and the doctor. Let’s celebrate the nurses and doctors who empathize, and teach the ones who don’t. I want two-ply toilet paper in every hospital bathroom, and ear plugs and eye masks to help patients rest. Let’s stop with the 4 am blood draw and focus on the patient who needs rest in order to heal.

I wish for prednisone to only be prescribed when absolutely necessary. I want patient care to move on to better alternatives for treatment that don’t cause such long term damage. We must educate about alternatives, and that surgery to remove an intestine is not a cure. We need to talk about life after surgery, about ostomy bags and j pouches and remission, and how the fatigue never goes away.

My wish for World IBD Day is that we connect with one another, with pharmaceutical companies, hospitals and GI offices all around the world. Let’s share our stories and compare what is working and what needs to change. I wish for those changes that will improve the lives of patients and caregivers and for those that will give a little hope to the newly diagnosed. Let’s make a change and spark some hope globally.
Happy World IBD Day.

Self Care Sunday Chats

Posted on March 12, 2017March 12, 2017 by flareuphope

I took a break.

I’m not apologizing for it. I needed it and it was enjoyed. Today I decided it was time to come back. I’m refreshed, ready to make some changes, to make some new connections and to offer my story and support for Ulcerative Colitis patients and others.

One of these changes will be Self Care Sunday Chats. While on this break from blogging about my life with Ulcerative Colitis, I’ve been focusing a lot on listening to my body, and acting on what I hear.

Remission is great, but it is tricky. Remission doesn’t mean that my body works exactly like it did before I was diagnosed with Ulcerative Colitis. It is still a different form of life that takes adjusting and getting used to. Some days I feel as though I never had this disease in the first place, and then I have to go into an infusion center to get my medication for 4 hours and I am reminded that life really is different. Some days I wake up feeling great, and some days I’m so exhausted I can barely take my eye mask off my eyes when I wake up. Every day is different, but there is good in every day.

I am well aware of how lucky I am to be in remission. This awareness was part of the reason that I needed to take a break from the community in the first place. I needed to enjoy this moment in my life and focus on the blessing of not having active disease instead of complaining about my past with it. I needed to figure out where I fit in this community now that I wasn’t flaring or trying to find a treatment plan or a good doctor. I have those things. It’s amazing, and it’s taking a long time to get there, and I don’t know how long it will last. I wish all Ulcerative Colitis patients could have these things.

When I was hearing stories of my friends in the IBD community suffering, my heart would just break and I would feel like I needed to apologize for being in remission. There are so many others who were struggling to find a doctor who would listen to them, or who were recovering from surgery without infections or having terrible reactions to medications. I felt like no one wanted to hear about how my medication and lifestyle changes were working or how I had a doctor who actually follows up and takes the time to hear my full story with this disease. I didn’t want to come across as bragging or arrogant. There were articles being tweeted around and polls about how people didn’t want to hear about success stories because it didn’t help them feel better.

Maybe some people don’t benefit from hearing about any positive outcomes from Ulcerative Colitis. I can understand that. And I accept that. We all have different ways of coping or not coping. The reason I’m still sharing my story is because I think about the person who comes out to the blogosphere after receiving a diagnosis. After typing in the disease in the search bar and hitting enter, how many of those articles are going to contain horror stories? How many are going to talk about how it is STILL POSSIBLE to have a life with Ulcerative Colitis? It might be a different life than you expected or planned for, but it can still be enjoyed.

So, that’s why I’m back. I’m back for the people I’ve connected with, and for the people I haven’t met yet who are looking to find out how life can still be enjoyed with a chronic illness.I’m back to share, to support, to connect and most importantly to share the joy I’ve found with this disease. Yeah, there is still no cure. It still is a beast and a terrible disease. But I’ve managed to find joy through it all, and I’m sharing that.

What I’ve Been Up To

My husband and I have set off on our own adventure this year, and started another blog to share our travels. If you’d like to check it out click on the link here: www.mibreakfastadventure.com

He bought me a nice camera for Christmas and I have fallen in love with photography. I’m actually attending my first photography club meeting this weekend and I’m so excited. You can see some of my photos on Instagram @mibreakfastadventure . We have been traveling to various breakfast joints across the state and just exploring those areas and sharing what we find. It has been a blast so far, and we have seen so many beautiful things. I’m truly happier than I have been, perhaps ever.

I’ve stopped trying to force myself and my body to morph into something that it is not made to be. It was becoming easy for me to rush, rush, rush and stress to make everything perfect. Instead of working with my body I was trying to beat it and push it to be “normal.” I can’t beat my body. And it’s not productive or healthy to keep trying to. I have found it more beneficial to care for it, and that’s how self-care Sunday came about.

Self Care Sunday

For these future Sunday posts, they’ll basically just be chats written in the morning about whatever flows through as I’m typing here. I’ll share what I’m doing to care for my body today, and anything else that comes to mind.

This morning I just drank a matcha green smoothie and a gluten-free donut because I’m all about that balanced life. I plan on going for a quick brisk walk in a bit here, quick and brisk because it is about 8 degrees outside with the windchill and I am not all about that.

This afternoon I plan on running through some practice questions for an interview I have on Monday for a new position in my office. I’ll get the laundry done and the dishes put away, and spend some time sorting mail and then maybe color for a little bit. Eventually I will get the veggies and fruits chopped and prepped for the week ahead, and sip on some mint-infused water throughout the day. I might even curl up with a book if it sounds good. Basically, today is about active rest and getting prepared for the week ahead.

I’ve added to my routine the practice of “what is done is done.” After 8 pm, if there are chores that still need to be completed, they can wait because I am now done for the day. I make a cup of hot tea, sit down in the lazy boy and snuggle up with my pets. I might read a book, I might watch a TV show or just listen to some music. I might call my grandma. I might hop on social media. Whatever I feel like doing at the time. After 8 pm, chores and obligations are done. No work, no laundry, no dishes, just restoration and enjoyment. It’s an hour to get my mind right and end the day on a good, peaceful note before heading to bed. It has been so beneficial, I highly recommend it to anyone.

My challenge to you is to test it out this week. Set aside a time for yourself where work or chores are not allowed. Make it work for you. Maybe nights aren’t good and you need to do mornings. That’s okay. Or maybe it’s in the middle of the day. Just take the time. Turn off your phone. Connect to yourself. Try it, and let me know how it goes!

See you next Sunday 🙂

Reflecting on 2016

Posted on December 31, 2016 by flareuphope

What. A. Year.

Globally and nationally the world has seen a lot of tragedies and set backs, and there are a lot of people who are ready to put this year behind them and move forward with hopes that 2017 has to be better.

It feels almost awful to say this due to the sadness I’ve seen across the globe, and please don’t view me as someone who doesn’t see these things happen and who isn’t affected by them. My heart has been broken over and over again and I can’t count the amount of times I’ve said I’m losing faith in humanity, or even that I had lost faith.

The 2016 year that I lived has been so full of love and joy it’s almost bursting at that have seams.

In January

We rang in that have helped new year as my last time under my maiden name surrounded by great friends. I had a remicade infusion. My fiance and I found an awesome new restaurant where I blessed out on eating potato nachos and a glass of wine. I didn’t worry about running to the bathroom or curl up in pain.

In February

There was lots of wedding planning, folding paper flowers, practicing yoga and waiting for spring.

In March

An awful MRI experience but confirmation I was cancer free, more remicade and my first bridal shower. Never have I felt so loved or grateful.

In April

Another bridal shower where I was embraced and accepted into a new family, bouquet making with my tribe and another infusion.
In May

I turned 28, celebrated our upcoming marriage with all of our couple friends and truly blessed out at the amazing bachelorette party my lovely friends threw for me. This month was full of all of my favorite things and favorite people.

In June

I married my best friend and favorite person in the entire world standing in the rain and then danced the night away in a barn that was almost 200 years old. We adventured to California and explored the coast from San Francisco to Eureka. We saw a whale tale and beautiful scenery and got to just be together. It was absolutely perfect. June ended on a low note with some upsetting TB diagnosis but only made me stronger in the end, as hard as it was to accept.

In July
We had weekends full of friends and family watching fireworks, going to baseball games, dinners and festivals.

In August

We saw Paul McCartney in concert, had another remicade infusion and met a new doctor at an IBD center. So happy to have a good medical team on my side. We also celebrated the pregnancy of one of my oldest and dearest friends and threw her a baby shower.

In September

We went canoeing and had cookouts and a Baby Q, pool parties and we finished the TB treatment. I travelled to my first IBD event as a consultant on a patient panel for Ulcerative Colitis. I got to fly to Miami and meet some of my IBD heroes in real life, and be a part of something bigger that could improve treatment and options available for those diagnosed with UC.

In October

We celebrated the marriage of one of my best friends to his perfect match, had another remicade infusion, introduced our dog to his brother and enjoyed some gorgeous fall weather.

In November

I flew to Atlanta for another UC patient panel. We welcomed a baby boy, Bobby, to our tribe. We saw cranes migrating and adventured to the Upper Peninsula hunting down waterfalls for Thanksgiving weekends after 2 joyous Friends-givings.

In December

My first IBD Twitter Chat, lots of IBD awareness, simple Christmases and a new feline addition to our household.

I’m looking to 2017 with lots of self care, optimism and a sense of adventure. I broke my remission streak during my TB treatment but luckily was able to snap back into it quickly and have been feeling great. I will continue to do everything I can to stay here, but I know that often these things are out of my control and I can only do my best. Whatever happens.

I don’t make resolutions but I do make lists and letters of what I want to accomplish and the state of mind I want to obtain. I’m so excited for the plans I have for this year.

What about you? How was your year? What are you most looking forward to?

Health Activist Writer’s Month Challenge- Day 14

Posted on November 14, 2016November 14, 2016 by flareuphope

Oh boy. Please keep in mind that this is a rant and ramble and if you’re easily offended, just skip this entry.

Diving right into it, the atmosphere on social media, Twitter in particular, has totally bummed me out lately. I don’t know what is about having 140 characters that causes people to just complain and attack and complain some more.

It sucks the life out of me and makes me not want to be a health activist in the first place, and makes me question if I want to keep writing.

There’s a ton of false information out there, and people retweet the click bait headlines without bothering to read the actual article and then are attacked for retweeting it and it just turns into this argument of one chronic illness person who was simply trying to share some good news, or what they thought was good news, to an attack.

Or someone shares their experience and gets shamed for it.

Or someone shares their political views and gets blocked by everyone else.

Or someone complains about the way one disease gets treated over another. Or one persons treatment choice over another. Or gets attacked for not knowing something about their disease.

It’s like we’ve forgotten to be humans. We’ve forgotten how to support one another and can only compare the bad stories.

It gives me all the ill feelings.

When I first came to Twitter, I found a community, a place to relate to people who were experiencing the same disease that I had, and place for support, for laughs, for encouragement.

It’s been a while since I have felt supported out there, truthfully. I’m not saying the advocates themselves aren’t doing a good job. Most of them are and I’ve been lucky to meet some them and feel supported by them in person or on other social media outlets. What is it about twitter that has changed where this is so hard to find? Are the people who are having a good life just not sharing it because they are too busy living it? Or has Twitter just become the place to complain about your life, and it’s not a spot to find support any longer?

This might cause some ripples, and I really am not trying to point anyone out or say that Twitter isn’t helpful. I’ve met some of my favorite health advocates out there. I’m just saying what has come across my feed recently, and it makes me sad. I’ve muted a lot of people lately, and I’ve added accounts that promote positive messages.

I’m certainly not saying that everyone has to be happy all the time. It’s important to share your truth, but that doesn’t mean attacking others for their experiences and it doesn’t mean every post has to be droopy and dreary, or every post has to be sunshine and rainbows. I just miss the rawness and hopefulness of it. Where’s the encouragement and laughter?

I’m ready for Tuesday because I’m not going to get sucked in to the complaining and attacking that occurs on social media, and I’m not going to let determine my outlook anymore. I’m not going to contribute to the divide. I am going to continue to promote my own message of health and positivity, and continue to share my story authentically and offer support and encouragement to anyone who accepts it.

Health Activist Writer’s Month Challenge: Day 7

Posted on November 7, 2016 by flareuphope

Was starting your advocacy journey a hard decision? Were you anxious and hesitant or were you excited and ready to share your story? Tell us how you chose to start advocating your condition.

I started this blog as an outlet for dealing with my condition after initial diagnosis. I was struggling with trying to find what works me for me and coming out here to find support and to share my frustrations. As my journey evolved, I started sharing more resources and sharing stories of people who inspired me. It helped me stay hopeful to connect with others who were going through similar battles, and I hoped it would help others too. I began sharing Hope Warrior stories and focusing more on the mental health aspect of how having a chronic illness changes you.

I do not claim to be an expert in IBD. I don’t provide medical or treatment advice. I just share my story and share what helps me, and hope it helps others too. It was hard at first and I was worried about people in my real life finding me out here and judging me, but after a while I stopped thinking about that. This is my life now. The more awareness I can raise about what dealing with an incurable disease is like in real life, the better. And, honestly, I’m proud to share my story, particularly when I know there’s a purpose for doing so.

Health Activist Writer’s Month Challenge: Day 4, A letter to my Newly Diagnosed Self

Posted on November 6, 2016November 6, 2016 by flareuphope

Sorry for the delay, I was away for the last two days participating in a patient panel for Ulcerative Colitis and I could not get the internet to work on my phone so just had to wait til I got home to write.

Day 4: Do you remember the day you were diagnosed? Perhaps you were scared, felt alone and surely you had tons of questions. Write a letter to yourself for the day you were diagnosed, knowing all you do now.

Dear Self:

By now you are probably coming down from the anesthesia and are realizing that while you finally have a diagnosis of Ulcerative Colitis, you have no idea what that is. The doctor told you to go to the internet to do some research, and I am here to tell you that there is a lot of scary stuff out there, so be careful and cautious about what you read. Start building up a support team, right now. Make sure you have a GI you can trust, a primary care doctor who stands up for you and supports you, a yoga practice that grounds you, and family and friends who will not let you down.

This is going to be the hardest thing you will go through in all the years of your life so far. Your life is going to change. There are going to be lulls and uproars and pits of despair and highs of gratitude. Hang on. You will find a treatment that works for you. Do not despair when something isn’t going right or nothing seems to work. You will find what works for you. You will be sick, but you will heal, and you will have a new appreciation for the good days that you do get. A huge appreciation. Learn coping skills and stress management.

Get on Twitter and Instagram. There are people out there who know exactly what you are going through and they will be some of the best people you meet in your life. Hold them close, they will be huge resources and sources of inspiration for you right when you need them.

This disease is individualized. Don’t judge others for their treatment plan and don’t compare it to yours. Find what feels good for you. ADVOCATE FOR YOURSELF. If something doesn’t feel right, speak up. This is your body. These are your veins. You know yourself best and you have rights.

You are not alone. Life may not be the same, but the new life you get is still pretty damn awesome. Don’t let go, keep fighting and get involved with as many opportunities as you can to raise awareness and change the way chronic illness patients are treated.

You can do this.

Gratitude Challenge : Day 4- color

Posted on November 4, 2016 by flareuphope

My favorite color has always been blue. My eyes are blue, my parents have blue eyes, my bridesmaids dresses were blue, my bedroom growing up as blue at one point; I’ve loved the color for a really long time.

I wore this blue vogmask today (check out my instagram or scroll all the way to he bottom of the page) while traveling to protect myself from getting sick. I picked this pattern because because it was blue and was called Chakra and I love yoga, so it was a perfect fit. I never thought I’d be picking out a mask color to wear on an airplane, but I’m grateful that there are companies who offer fun options for immunosuppressed people to wear. It makes me feel less like a sick person and more like someone who is empowered to protect her health.

30 Days of Gratitude Challenge

Posted on November 1, 2016November 1, 2016 by flareuphope

I’ve been utterly exhausted and so frustrated about the amount of negativity and attacking I’ve seen on social media lately. I’ve been lurking in the background swiping through posts upon posts of complaints and negativity and worries and fears. This toxic thought pattern has drained part of my spirit and makes me question why I came out to start this blog and find support out here in the first place.

I’m starting a 30 day gratitude challenge for myself. I need this. I need to reconnect with why I blog about how having a chronic illness impacts my life and my mental health. I need to get back to gratitude for being alive, for having the gift of this life. I need to determine if I want to continue this. Be the change, right?. I’m tired of the negativity, so I’m not going to contribute to it.

Do you feel drained? Maybe you need this too? Feel free to join me, I’ll be posting daily throughout November in honor of the month of Thanksgiving- and just reminding myself to give thanks, and to find the light in the darkness.

Here are the dates and suggested writing topics I created for the month to spark a gratitude practice. Feel free to screenshot, join, share and follow along on instagram and twitter, I’m @flareuphope pretty much everywhere. Let me know what you’re thinking of his month and tag me in your posts so I can see.

Chronic illness isn’t fun, but there’s always something to be grateful for. Stay tuned for my first post tonight!

Flare Up Hope

it starts with a spark

autoimmune disease