Gratitude Challenge Day 9- Quote

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. 

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.

 

 

 

 

 

 

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 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?

Gratitude Challenge Day 1

Scent.

Hello, November. It truly is good to see you.

 

On the first day of November, one of my favorite things to do is to go to our local drugstores and grocery stores and buy the clearance Halloween items. I take them home, pack them away and next year, October 1st, I get to open my box of goodies and it truly brings me so much joy. I’m pretty basic when it comes to October. Give me all the pumpkins, cinnamon, cider and beautiful leaves. I’ll skip the Pumpkin Spice Latte, but I’ll take a black coffee any time of the day. Every year one of the best items I find is a candle. Last year, I bought this bath and body works candle at the end of season and let me tell you, lighting that baby this month has filled our house with deliciousness. IT IS AMAZING. Burning the last of it tonight as we watch the World Series with cups of hot cider. Ahh, comfort. It’s like sitting next to a fireplace, except that fireplace is a pumpkin candle and not really a fireplace at all.

One of my all time favorite scents that always make me feel warm and cozy is the smell of a wood burning stove. My grandparents have one at their house and it always reminds me of Christmas and coffee and cookies and love and family. When I drove to work this the morning, I went by a house with a wood burning stove and the smell floated out over the road. It was right at the beginning of my drive, and brought a smile to me face as I started my day. However, what I’m truly grateful for today, is rotten, stinky terrible smells.

I love the laughter when something stinks SO BAD. My dog has had some pretty rank farts lately, and I’ve laughed myself to tears trying to get away from it. Don’t even get me started on the way he tilts his head when that noise comes from his but.

Why is something that smells so awful so funny? It’s so worth smelling a stinky smell yourself to see someone else’s reaction  to it. When my husband and I go driving and exploring, some times we pass farms that have the most tear inducing odors that we both try to hold in our laughter and watch the other person to see their reaction first before you admit to smelling the rotten thing, and then we end up having to pull over in the thick of the scent because we’re laughing so hard we can’t breathe.

Stinks are an experience to be shared,  to quote my husband.

Do you remember the last time you smelled something terrible? Did you laugh?

 

 

30 Days of Gratitude Challenge

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 In Vacations

I can’t say I’m entirely thrilled to be back home in -23 degree mornings (yes, that is a negative 23 temperature), but man, I missed the privacy of my own bathroom and only having to share it with one other person. Little blessings.

Vacation was different this year. This was my first non-sick/IBD related day off from work in over a year and a half. You could say I was looking forward to it. I wasn’t even realizing that this was my first vacation with my IBD. The thought did not even cross my mind at all. I was thinking of sun, and sand and not having to think about anything else but just relaxing and doing whatever I wanted. I still had the mentality that vacation was going to be about lounging and laughing and eating and drinking and just letting go.

At my infusion before we left for vacation.
At my infusion before we left for vacation.

My infusion was the Friday before we left, and we were driving to avoid the chance of me getting sick with my immunities being so low right after the remicade (we both came back home with colds anyway) and my fiance drove the whole trip. I was nauseated a couple of times and had some cold sweats but mostly got through okay. Absolutely no urgency. We stayed overnight in Georgia so I could get a goods night sleep and be in full vacation mode when we arrived on Sunday. I think part of me was thinking that not only do I have time away from work and obligations, but part of me kind of thought I was going to be on vacation from this disease as well.I was so ready for Sunday and to be feeling better. As we were driving in to FL and a few miles away from the house, we had the windows down and the sunshine filtering in and it all felt wonderful. I closed my eyes and felt the wind come through the window onto my face and just smiled, feeling so grateful that I was well enough to be there.

The first couple of days were great. We went fishing and relaxed, went out to the everglades and just did whatever we wanted. I was still seeing some blood, but I wasn’t in any pain or too concerned, just waiting for the remicade to do what it needed to and watching what I ate to try to avoid anything I knew triggered a flareup before. I smuggled my own Ketchup in my purse. I don’t drink anymore because it triggers inflammation for me, but I was able to find some iced coffee everywhere and was a happy girl.

Every time my fiance and I have previously been to Florida on vacation, we usually spend a night at an oyster bar filling up on ketchup and horseradish and crackers and beer. It’s one of my favorite memories on our first vacation together, sitting on the patio with a corona and oysters, laughing and carrying on without a care in the world.
We went out to one oyster bar on our 4th or 5th night there, and I ended up breaking down. Reading over the menu, there was a large warning specific to “persons with autoimmune diseases” that eating the raw oysters may cause severe illness or even death.
Oh.
I never thought I would cry over oysters. Or in public. At a restaurant of all places. It was like a scene from a stupid cheesy movie when the waitress comes over to ask for your order an you’re trying to pretend like somethings in your eye. Sometimes I just get so tired of this disease surprising me. And on vacation?! Vacation is where you’re supposed to leave all your problems behind, right?
As I sat quietly through dinner of french fries and my smuggled Ketchup I tried really hard not to let the tears drop down my face. I just wanted a vacation. A vacation like I remembered. Like I used to have.
When we left the restaurant, I cried for a little while though I really didn’t want to. And then I asked my fiance to help me redefine vacation. If vacation wasn’t going to be what it used to be, I needed to change the way I thought about it.
I can’t take a vacation from my disease. It’s part of me, and I can’t neglect to take precautions, take medications, and take care of myself. Even for just a little while. I can, however, go to the beach. I can take walks to wherever. I can put my toes in the water. I can walk on the pier. I can drink coffee. All kinds of coffee. And smoothies. I can do yoga. On the beach. I can go visit old trees, and get close to alligators. I can eat strawberries fresh off the farm. I can watch the sunset. I can make the most of what I’ve been given, and not focus on what I’m unable to do.

This vacation helped me realize that many things are still going to need to be redefined in my life in the future. I’m still mournful there are things I used to be able to do but choose not to do now because they make my quality of life lower due to the disease I have. It’s not easy to give up some of my favorite things. The letting go allows something else to be discovered, however, and I know that there’s more out there for me to find. I’m grateful that I was given the opportunity to try some of these things once before, and that I have memories of those moments to call on and relive when I want to. This vacation reminded me of what a gift my life is, and what a gift each moment is. I really never know if there will be a next time. Neither do you. Hopefully, I can remember that more often.

Here I am, focusing on what I can do:  a bridge in front of a tree that is over 150 years old.
Here I am, focusing on what I can do: a bridge in front of a tree that is over 150 years old.

WORLD IBD DAY- Hope in the Beatles

In honor of world IBD day and in honor of my 28th trip around the sun today, I’m reposting one of my favorite posts about my IBD story. I will never forget how this disease makes me feel. I will never stop being grateful, and letting others know they aren’t alone.

Been doing a lot of listening to the Beatles and anything on the Beatles Pandora station lately.

Here Comes the Sun always brings me to tears. Good tears. Something about the smiles returning to the faces, it seems like years since they’ve been here. I can feel that. And it’s such a good feeling.

Man, this last month has been…not describable in one word. Not really describable in one post either, which is why I haven’t been sitting and writing lately. Shame, shame, for I really wish I would have documented more. But I remember. I remember sleeping, or trying to sleep sitting propped up on my mom’s couch with a million blankets, only to throw them all off of me to sprint to the bathroom 6-7 times a night. Laying there with my hands hovering over my stomach, praying and pleading with God to make the cramping pain just stop so I could sleep. I remember feeling such loss and loneliness every time my boyfriend would go home after coming to visit me, just wanting so badly to feel better and be there with him, helping him with the purchase of our new home and packing and moving and just wanting my life back.

Little darling, it’s been a long cold lonely winter
Little darling, it feels like years since it’s been here

I remember the look of exasperation on my mom’s face when I wasn’t getting better, and the look of love as she made all of my meals to try and get some nutrition in me, and her talking to me about how important it is to have faith, and God would get me through this, He would answer our prayers. I remember her sitting in the car and praying with me for good news before we went in to my colonoscopy. Praying for answers, for results, for improvements. I remember her telling me that I will get better. That I’m an overcomer. And telling me it’s okay to cry. It’s not a sign of weakness. It’s a sign of strength. I remember her packing my hospital bag, buying random items from the gift shop to make me smile, taking care of my dog and bringing me water or pedialyte or blankets whenever I needed it.

Here comes the sun, here comes the sun
And I say it’s all right

I remember my dad sitting by my bedside in the atrociously uncomfortable hospital chairs. All day. Every day I was at the hospital that he could be there. Even when I was just sleeping. I remember how tired he looked. How he drove around aimlessly and prayed for answers, and pondered unanswerable questions with me. What causes this disease? Why do I have it? What are we going to do about it? When am I going to be better? How can we get other people to understand this? What’s the bigger meaning beyond this? I remember him going for walks with me down the hall, and joking with the nurses.

Little darling, the smiles returning to the faces
Little darling, it seems like years since it’s been here

I remember the nurses. The good ones mostly. But I also remember the one that blew up my vein when giving me a steroid infusion. And the one that said I was admitted for IBS. (IBS and IBD are two different ailments, one is a syndrome and one is a disease with no cure). I remember Jim, my favorite night nurse from  my first hospital stay at the beginning of the month, making jokes and giving advice on how to talk to the doctors to make sure I was heard. I remember on my second hospital stay, him coming to tell me hospital ghost stories and making jokes while I was getting emotional from the steroids and just not having any answers or improvement. I remember my favorite day nurse Jannell with her poufy hair and outspoken voice, telling me that I was one of the sickest patients she’s ever had, calling me Jack and telling me stories. I remember waking up to her Sunday morning telling me I needed blood asap and we were going to be doing a blood transfusion today. I remember being scared and sad and she told me everything was going to be okay, that she would be here the whole time and that I had choices. That it was going to be a good thing and she would be there the whole time.

Here comes the sun, here comes the sun
And I say it’s all right

I remember the changes in the medications. The discharges. The parasite. The antibiotics. The stomach acid burning. The we’re going to do remicade. The no we can’t do remicade until you’re stable. The phone calls from my doctors cell phone that I needed to make myself available to be admitted to the hospital. The colonoscopy that was useless because I was too inflamed. The TB test that was incomplete because I didn’t have a baseline to compare it to my immune system was so shot. The chest x ray. The blood draws. The IV team being called because I have terrible veins. Baby needles. Poke after poke after poke after poke. The waking up to check vitals. Low blood pressure, high heart rate, danger of organ failure. Blood loss. Cramping. Tears. Weight loss. Worry. Treatment plan change. New doctor. Infectious disease specialist. Lifelong medications. Steroid infusions. Steroid pills. Night sweats. Sharing a bathroom with other patients. Not making it to the bathroom on time. IV poles. Unable to stand in the shower on my own. Passing out while buying dog food. Collapsing on the stairs into the house when my legs gave out from under me. Shaking. Scared.

Sun, sun, sun, here it comes
Sun, sun, sun, here it comes
Sun, sun, sun, here it comes
Sun, sun, sun, here it comes
Sun, sun, sun, here it comes

I remember the night my boyfriend came to visit me at my mom’s house in the evening. I remember when he looked me in the eye and told me “I need you to get better. Now. I miss you.” I remember his text messages telling me that he was always going to be here, that even though I am sick now, and not to undermine my illness, but this is part of life and we will get through it together. That he’s going to be there for me in the good times and the bad. That we’re a good team and when one of us needs the other one to be strong we balance each other out. I remember getting strength just from holding his hand. I remember just being held in his arms when I was able to move into our new home. Just being so grateful to have time together, to be able to have our new home, to relax and to heal and to make memories and be together. I remember sitting outside and crying just tears of joy at how lucky and blessed I am to be here and able to experience these moments of love and to just feel happiness.

Little darling, I feel that ice is slowly melting
Little darling, it seems like years since it’s been clear

I remember the prayers. I remember my grandma coming to visit me at my mom’s house and crying on the couch with me. I remember her telling me that she does her walks in the basement and says her prayers. That she won’t stop, ever. I remember my aunts sending prayers and prayer chains and being on church lists. My grandma’s brother even did a whole sermon on me. I remember the novelas, my grandma praying every hour on the hour for my healing. Saying she won’t give up. I remember the prayers and visits and emails and texts from wonderful friends that I now consider family, bringing laughter and cheer and Golden Girls cards and books and magazines, and just checking in daily to see how I’m doing, sending pictures and memories past to bring smiles. I remember the encouragement from social networks, people I have never met before praying and sending kind thoughts and positive vibes. The power of prayers. And they were answered.

Here comes the sun, here comes the sun
And I say it’s all right
Here comes the sun, here comes the sun
It’s all right, it’s all right

I remember getting discharged and my mom wheeling me out to the car to my waiting dog, and how he put his head right on my shoulder and just hugged me. I remember being weak and unable to walk through the grocery store, riding an amigo to get food. I remember sleeping and sleeping. I remember the first infusion. And the naps afterwards. And the feeling better the next day. Feeling stronger every single day. Doing a little more each day. I don’t want to forget it. I don’t want to lose sight of the beauty of this life. Because it is so beautiful. There is so much to be thankful for. I know that sick days can come again. I don’t have control over when this can happen. It’s not my plan, it’s His. But I do know that what I can do right now, is shine like the sun. And share love. And light. and hope with the rest of the world. Because it’s there. You just have to believe it.

Here comes the sun. It’s all right. 20140531_210240