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.

Gratitude Challenge: Day 8- Hero

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

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

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

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.

 

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

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

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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Gratitude Challenge : Day 4- color 

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. 

Gratitude Challenge: Day 3-Fill Up My Cup

I would be a liar if I said I didn’t stress easily. I get stressed quickly when things are not in order or if life feels out of my control. Just a few hours ago I felt my blood pressure rise because I couldn’t get the tinfoil roll to fit in the drawer (first of all, why do they make tinfoil rolls to long to fit in a kitchen drawer?! What the fork.) and I was simultaneously freaking out because I haven’t finished packing and have to leave in the morning and forgot to get some extra snacks for the plane because I have this irrational fear that I won’t be able to find anything to eat. No major problems, but this kind of stuff can have the ability to ruin my night if I let it.

Ugh. Stress. Sweating the little things drains my spirit, and I let it happen far to often.  My husband rarely stresses like I do, and when he does it is usually warranted. He’s constantly trying to get me to “shake it off” literally by doing crazy arm waving moves and “shaking away” my stress.

I try to work on not letting things get to me. I really do. I know that stressing over all of these things that really don’t need to be stressed over  wears down my body and doesn’t contribute to healing or any sort of healthy lifestyle. I’m a work in progress.

Part of my self-care includes sitting down with a hot beverage and just sipping. It used to be hot water with lemons in the mornings, and that was awesome. Lately it’s been hot cider at night after dinner, and that’s great too. Something about a warm drink in a cute coffee mug fills my soul with comfort. It’s like with each sip some of that stress melts away, and I wonder why I was ever freaking out about the too junky junk drawer or whatever little thing that doesn’t matter in the first place.

 

What fills your cup?

 

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?