Self Care Sunday Chats

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 🙂

 

 

 

 

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Health Activist Writer’s Month Challenge- Day 14

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 8

Little Engine Post

Write a list post with 10-15 lines that each start with “I think I can…” Write 5 lines at the end that start with “I know I can.” They can be big goals or something that’s been on your to-do list for the last few weeks-it’s all up to you.

I think I can start photography as a hobby.

I think I can travel Michigan with my husband and share our adventures. 

I think I can attend hot yoga classes, or any yoga classes really, regularly and take my practice outside of my home. 

I think I can wake up early again to enjoy mornings. 

I think I can continue to practice healthy habits to keep my disease in remission.

I think I can complete this 30 day challenge.

I think I can put my wedding and honeymoon pictures in frames and albums this year. 

I think I can get through this election night. 

I think I can remember what my values and beliefs are no matter what happens in this country.

I think I can surround myself with people who make me want to be better, who inspire  and bring more light to the world. 

I know I can finish this blog post. 

I know I can continue to raise awareness for Ulcerative Colitis patients. 

I know I can practice presence and give thanks for the opportunities I’ve been given.

Health Activist Writer’s Month Challenge: Day 7

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

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

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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The Health Activist Writer’s Month: Day 3

Quotation Inspiration. Find a quote that inspires you (either negatively or positively) and free write about it for 15 minutes. 

“Hope” is the thing with feathers –
That perches in the soul –
And sings the tune without the words –
And never stops – at all –
And sweetest – in the Gale – is heard –
And sore must be the storm –
That could abash the little Bird
That kept so many warm –
I’ve heard it in the chillest land –
And on the strangest Sea –
Yet – never – in Extremity,
It asked a crumb – of me.
-Emily Dickinson
This is more of a poem than a quote, but I love it anyway. To me, there is no life without hope. It doesn’t take a lot of effort to have hope, it takes a lot of effort to destroy hope. It doesn’t ask for anything in return. It’s always there, sometimes you just have to look a little harder for it.
I find comfort in looking for hope. I don’t like to ask why certain things happen, why I was diagnosed with an autoimmune disease, why some people are having problems healing and why I’m lucky enough to be in remission. I don’t ask why. I may never know the answer. I don’t look for the reason, I look for what good could possible come from a situation. I know it’s not easy for everyone to do, but I promise it makes life so much better.
There’s something to be hopeful for even in “the Strangest Sea” or the worst flare or the loneliest night. It makes your soul come alive. It sings. It floats. It lifts you up.
Hope is powerful. Some people think too much hope can lead to disappointment, but I don’t feel that way. I’d rather live in a world with too much hope than to not have any at all.

Gratitude Challenge: Day 2- View Out My Window

Well, it as dark when I left this morning and it is dark now as I write this so I can’t quite show you he current view out my window. This is what it looks like this time of the year. 

I love living next to water. I love going outside and sitting on our back porch, or doing yoga, or watching the geese land and take off. When we moved out here, it was a breath of fresh air. It is the perfect place to heal. 

In the mornings when I on have to work quite so early my dog and I snuggle up in our lazy boy next to he window and just watch the river and sometimes catch the sun rising over it. This time of year there are some exceptionally beautiful moments when the sun reflects off the leaves and the water, but it can be beautiful all year round. Something about just watching water flow relaxes me. Anyone else feel that way?

I know having a view like this isn’t something everyone has access to and I certainly don’t let a day go by without appreciating it. 

What is your favorite view outside your window?

The Health Activist Writer’s Month Challenge: Day 2

​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

: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!