Some sounds I’m grateful for:
The click clack of my dogs nails on our floor when he comes to greet me when I get home.
The water flowing over rocks when we’re canoeing.
My baby cousin laughing.
The flame of my candle burning and flickering.
Pops and cracks of a bonfire.
My grandparents singing and whistling.
Today I’m thankful for the wood floors in my house that I hear my dogs toes go clicking clack on. I’m thankful for the grass that the flowers bloom in and that it makes everything so green and bright in the spring. I’m thankful for the pavement that let’s me drive to work and home and to be with family and friends.
I’m thankful for the ground that supports me and let’s me reconnect with my roots.
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.
R.M. McNeil (my grandma)
My grandma said this to me a few months ago and it has stuck with me as a mantra for my life. With everything that’s going on in the world, giving back and giving an hand up or a hand out is important, and it’s a value I hold dear. These words remind me to be kind and generous and helpful, whether that be with my time, words or dollars. My grandmother has taught me a lot over the years, and I’m so grateful for her heart and the influence she has had on mine.
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.
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.
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.
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.
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.
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.
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?
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?
Flare Up Hope 