ulcerative colitis

Gratitude Challenge: Day 8- Hero

Posted on by flareuphope

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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Health Activist Writer’s Month Challenge: Day 7

Posted on 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.

 

Gratitude Challenge: Day 7-Must Haves (Sponsored Post)

Posted on by flareuphope

I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.

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I have been traveling so much lately! Having a chronic illness makes it hard to leave spur of the moment so I try to always be stocked up on things I need. Here are my top items, missing from this picture is my hand sanitizer and pack of Lysol wipes because I ran out on my trip this weekend, but I ALWAYS have those with me so I don’t really consider them things to pack.

Fresh Assist- This stuff rocks. It pretty much turns any toilet paper into a wet wipe. Immediately. You just take the toilet paper like you normally would, spray 3-4 times, and wipe. Bottom-bing bottom-boom. I definitely wish that I had some when I was staying in the hospital, though I did bring my own toilet paper during my last stay there. This makes almost any toilet paper bearable. And there’s no harsh chemicals! And it’s safe for your toilet. Everyone wins. It’s really quite affordable too. Buy some for yourself here. (http://www.freshassistspray.com)

Sunscreen- Remicade makes me more sensitive to the sun, and it’s good to wear sunscreen anyway.

Eye Drops-I wear contacts usually, and my eyes get so dry from staring at a computer screen all day, or from sitting in a plane. These eye drops are my favorite.

Face Lotion- Washing my face after a day of travel and putting on a nice moisturizer makes me feel right at home.

Hand Lotion-I was my hands or use sanitizer all day long so my hands get pretty raw if I don’t keep them moisturized.

Shower gel- The W hotel I stayed at last weekend had some nice soaps and lotions, but they aren’t all like that! I don’t like the residue some bar soaps at hotels leave behind, so I bring my own when traveling.

Dry Shampoo- If this stuff isn’t for travel, I don’t know what it’s for.

Colgate mouth wash-Sometimes you need to feel a little more fresh than what a piece of gum might provide.

Face wash- Pretty self explanatory. Clean the dirt off your face, people.

Roller perfume-Easy to travel and you don’t have to worry about a bottle breaking in transit.

Hair tie, bobby pins and q tips- pretty standard. Multiple uses. Always wish you had them if you don’t!

I’m truly grateful for the opportunities I’ve been given to travel and and to share my story and voice my ideas for improvements in this community. It’s been amazing and inspiring. I’ve met some of the best people in the world, and I’m proud to be a part of the change that I hope happens for patients with Ulcerative Colitis.

 

 

 

 

 

 

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

Posted on 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 5- Sweet Treat

Posted on by flareuphope

Yesterday I was at a patient panel in Atlanta to help improve the availability of resources and support for people with Ulcerative Colitis. I’ll share more on that later, but I can tell you that I was SO excited to find a sweet treat I could purchase at the Chicago O’Hare Airport while waiting for my return flight home.

Gluten, corn or soy were not included in my diet after I was diagnosed with Ulcerative Colitis. While removing these items did not cure me or push me into remission, I do believe they help keep me there. I did an elimination diet to find out what foods made me feel bad or good, and these three were all on the bad list. I have tried to reintroduce them previously but have not had any positive results so far.

To satisfy my sweet tooth, and I have a serious sweet tooth, I have a lot of home-made paleo baked goods, and every time I’m at the grocery store, I read the back of every single chocolate bar to find one without soy in it. It is so exciting to find one that doesn’t have it, though they are rare.

I received a gift from my closest friends that included all kinds of recipes specific to my diet restrictions and that book had some really yummy looking marshmallow treats in it. Unfortunately when our basement flooded that book became a casualty and I haven’t bought a replacement yet. I haven’t had marshmallows in 3 years. This might not seem like a big deal, but I love a big cute mug of hot chocolate with some marshmallows in the winter.  A mug of chocolate almond milk does the trick now, but I’ve had to go without the gooey sweet mallows for a while because they are all made of corn syrup.

Well, that all came to an end last night. I found Katherine Anne Confections at the airport and they had homemade marshmallows and they are delicious. I ate one at the airport last night and then enjoyed another in my coffee this morning. Sam wanted some too. Sometimes its the little things to brighten up your day, like a sweet treat you haven’t been able to eat in years that you find in an airport. Mmmmmmhmmmmm.

 

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Gratitude Challenge : Day 4- color 

Posted on 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. 

The Health Activist Writer’s Month Challenge: Day 2

Posted on by flareuphope

​Every great writer has their own process! What’s the blogging process look like for you? Do you set aside time each week to write or do you wait until the inspiration hits? Do you finish a post in one night or use the week to perfect it? Do you edit your blogs or just hit publish? Whatever it is you do, it’s unique to you and we want to learn about it.

I have bad habits when it comes to blogging. When I first started I was posting Hope Warrior stories regularly on Wednesdays and then one other day of my own thoughts. Over the last year, the regular practice of sharing Hope Warriors has fizzled out. I am still more than willing to share inspirational stories, but people are busy. I send out interviews and they don’t get sent back. I don’t like to push people because I know what chronic life is like and I would rather have patients put themselves as a priority than stress about responding to my email. 

The lack of participation wasn’t the only contribution to my irregular posting. I also got married in June, so most of the last year and a half were spent planning (I LOVE PLANNING) and enjoying all of the festivities that come with getting married. Life has been good. 

I’ve been contacted to partner with more companies and bloggers lately, and that has pushed me to get back in to posting regular content. I’m still working on making updates to the blog and creating a regular posting schedule. I work full time so right now I just post whenever it is convenient. Currently I am on break at work, typing on the WordPress app on my phone. I’d like to get better about editing and learning more about creating cleaner, better posts, but for now getting back into writing is the goal, so I just hit Publish as soon as I can. Things might be a bit sloppy, but I’m writing again and hoping to support others. Right now, that’s what is important to me. 




The Health Activist Writer’s Month Challenge- Day 1

Posted on by flareuphope

:What?! Three blog posts in one day? This is madness.

Yet, it’s true. In an effort to get back into this and continue to truly try to help others, I’m going to try and participate in this challenge this time. It might not be a blog post every day, so check me out on Instagram because I’ll probably post more there as I’m still learning the ins and outs of WP, and the ‘gram is just easier sometimes.

Without further delay, let’s get started with day 1 of the November HAWMC.

Q: First, Let’s get to know each other! What drives you to write about your health? What do you want other Health Activists to know about your condition and your activism? Reflect on this for 15 to 20 minutes without stopping. 

Hi! My name is Jacklyn and I started this blog as a place to share the struggle I was having facing the diagnosis of Ulcerative Colitis. In 2013 I was diagnosed, and by 2014 I was hospitalized as we were not able to manage the symptoms of my disease. Over the years I have tried multiple medications, diets, stress management tools, support systems and everything I possibly could to fight this disease. When I was given the diagnosis, I was told that there was no cure, but the goal was remission and we would try everything we could do to get there. Eventually I was stable enough to start Remicade, and I have been getting infusions every 8 weeks ever since. I am currently in remission.

The physical symptoms of Ulcerative Colitis are terrible. The pain can be unbearable at times and the complications and side effects from medications, all of these things are important in understanding the disease, but that’s not why I’m here.

My mental health had a bigger impact. I was depressed, anxious, angry and grieving my old life. I was 24 years old and I was just starting to begin my adult life. I had dreams and plans and they were all, it seemed, stolen from me because of the diagnosis of this disease. I had no idea how to cope with that. I told one doctor of my anxiety, and she shrugged and said “that must be rough” and moved on with her day.

I started this blog in the middle of this process to convey my struggles, to put words to my feelings, and to show others that there still can be a life with a chronic illness. There may not be a cure, and life may certainly not be what you see on TV or what you thought it would be like, but it’s a life. And there’s good to be found in it.

The whole concept “Flareup Hope” started with a conversation with my dad. I told him I was starting a blog to help raise awareness and to connect with other people who were going through the same thing. We brainstormed, and came up with this because in the deepest darkest moments of my last flareup, what I held on to was hope: hope for healing, hope for getting through one more minute, one more sunrise, one more day. Finding hope has become my mantra. I search for people who are willing to share their stories (message me if you would like to) in order to inspire others to keep fighting.  I share my own thoughts and challenges and medical experiences.

I do not claim to be an IBD expert, or an advocate, or to have the answers for you. But I am a real human with Ulcerative Colitis, an autoimmune disease that does not have a cure. I am a patient, a daughter, a spouse, a dog mom, and someone who loves to write, take pictures and go on adventures and starting projects. I have dealt with depression and anxiety and I have grieved the life that my chronic illness stole from me. I’ve developed a sense of gratitude for this new way of living, and I share some of my methods and coping mechanisms for dealing with all the feels these conditions bring.

My mission here is to provide sparks of hope to people that need to keep fighting. It only takes a spark to light up a room.

Thanks for bearing with me on this first ramble of a post. Can’t wait to read everyone’s day one intros!

 

 

 

 

 

 

30 Days of Gratitude Challenge

Posted on 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!

Hope Warrior -Kristen Boehmer

Posted on by flareuphope

It’s a new Hope Warrior Wednesday!

I’m so happy I get to share a little bit of Kristen’s story and how she copes with having a chronic illness. She’s a busy gal, but was able to answer a few questions. Make sure to check out her website Living Loving Paleo and her instagram @livinglovingpaleo for some mouthwatering food photography and her life with Crohn’s Disease.

Meet Kristen!

I was checking out your story on your website (I will link it here), and boy have you been on an unbelievable journey. I know you were young when you were first diagnosed with Crohn’s Disease, but do you remember how you felt when you received the diagnosis?

Being diagnosed with a chronic disease isn’t something that I could fullyunderstand as a kid, which in some ways, made it easier to cope with. My parents immediately took full responsibility for my health, but at the same time, I did have to grow up quickly.

Taking 96 pills a week at age 12 is a lot to swallow, no pun intended. What would you tell a pre-teen going through something similar right now?

I would tell a pre-teen that no matter what, they should never, ever give up. It may feel like your world is falling apart, but if you allow it, your illness can actually become your greatest gift.

It is really frustrating when I feel like some doctors are not hearing me. It sounds like you went through something similar. How do you advocate for yourself now?

I’ve found a practitioner outside of conventional medicine who really listens, and that’s made all the difference. Thankfully I’m healthy enough now that I don’t need any sort of outside intervention.

What is your current treatment plan? (Natural and pharmaceutical if applicable)

After spending many, many years on medications, I’m now able to control my disease completely through diet and lifestyle. I eat what makes me feel good and live a life that I love.

 Your website has lots of delish Paleo recipes. What inspired you to start Living Loving Paleo?

I wanted a place where I could share my journey (outside of social media) as well as my recipes, so a blog felt like the perfect format.

How do you balance working full time with managing your chronic condition and spending time with your family?

While I have Crohn’s Disease, it’s thankfully no longer something that I need to manage. I work from home and accomplish much of what I need to get done while my husband’s away at work (he works 48 hour shifts as a fire fighter), so that when he’s home, we can spend much of our time together.

You talk about the fatigue, waking up tired and going to bed tired when fighting infections and the ongoing battle an autoimmune disease fights with your body. Do you still have days like these? What do you to conserve energy?

My health is by far the best it’s ever been, so thankfully those days are VERY far and few between! If I do come down with a cold or the flu, I simply set everything else aside and completely focus on my health. My immune system is fully functioning now, so I’m very rarely sick for more than a couple days.

 We went to San Francisco on our honeymoon and feel in love with the city. I am so jealous that you get to live near a city with the best coffee and some awesome food options! Eating at a restaurant can be difficult for IBDers who are afraid or embarrassed to ask their food to be cooked in ways specific to their needs. Do you have any tips for handling these scenarios? 

I have a great dining out guide where I’ve shared all my best tips and tricks! It

can be found here – http://livinglovingpaleo.com/2016/06/15/tips-dining-

paleo/

I truly believe that our environment can play a huge part in healing. Do you have an area in your home that helps you gives you the hope you need to keep fighting? What does it look like?

I really do my best to keep my entire house filled with calm, healing energy.

How do you treat yourself when you want to indulge?

I get a mani/pedi or a massage and take myself out to lunch!

What are some of your favorite books and or music/podcasts?

I love reading and have too many books that I’ve enjoyed to list off. As for podcasts I love Balanced Bites, The Sessions With Sean Croxton and The Tim Ferriss Show.

If someone were to ask you to tell your story in one sentence, what would it say?

Although my journey hasn’t always been easy, it’s given me the most beautiful life I could ever imagine.

 Do you have a mantra or an image that you use to give you strength or encouragement?

I recently heard Tony Robbins talk about achievement versus fulfillment, and it really stuck with me. I don’t have a specific mantra or image, but I believe in filling my own cup up before I can give to anyone else. When I’m fulfilled and loving life, I put out my best work.

What are some of your hobbies and activities you enjoy?

Cooking, reading and being outside with my husband and dogs.

Where are some of your favorite places to travel?

Hawaii for sure!

 

Who gives you hope? Do you have any “Hope Warriors” that inspire you?

While my husband has always been my number one supporter, he’s taught me to love and cherish myself first, so I’ve become my own “hope warrior.”

 

Thank you so much for sharing, Kristen!  I’m so glad you’re doing well and enjoying a beautiful life. Love your story, and I’m honored to share it. 

Happy Wednesday Folks!