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?

 

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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 my MRI scan

* warning* this is a long post
If you are looking for my tips on how to prepare for an MRI and don’t care about my experience scroll to the bottom. Thanks for reading!

I wanted to share my MRI experience last night in hopes to prevent others from going through what I went through. I was told that this would be a 30 to 45 minute scan, with no contrast but lots of breathing and holding my breath.

First off, let me say that I went into this with complete confidence. I’ve had an MRI on my back years ago and knew what it was like and was prepared for it. However, this turned out to be an entirely different experience.
I arrived at the hospital at 645 for my appointment at 7pm. I checked in, completed a form and sat down in the waiting room.
At 730 a tech came to get me and escorted me to a locker room. They were out of scrubs so she had me wait while she went to get some for me to change into. When she came back she showed me where to change and lock up my personal belongings and said she would be right back to escort me to the MRI.
Scrubs are so warm and cozy. Not. I was freezing.
Here I am modeling my new outfit.

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I paced the locker room that i had been left alone in while waiting, trying to stay calm and ease my anxiety. 30 minutes later another nurse came in to get me, not the original person. She acted surprised that I was still in there and asked if J* had been in there yet. She said she didn’t know where the original person was but that she would take me back even though I wasn’t her patient. This person (we shall call her S*) ended up being my angel that night, but at the time I was a bit frustrated for being forgotten about i had been at the hospital for over an hour at this point.  When we arrived back at the machine she asked me if I had been told how this would go. I said no, I had only been escorted to the locker room and told to wait there.
She had me sit on the bed that goes into the machine and handed me some earplugs. She got me a warm blanket and then the other nurse (j*) showed up and tosses a bag of fluids and contrast in my lap.
“Okay! Ready for your IV!?”
uh. What?
No one said anything about an IV.  The phone call prior to coming on to the MRI said I wasn’t having any contrast. I had no prior knowledge of this.
I felt my heart racing as I stared at the huge needle that had been dropped in my lap. My veins are poor and I had to stop drinking water at 2pm that day per the phone call for my scan. I knew I was dehydrated and would be a hard poke, and hadn’t prepared for it. You just don’t drop an IV bag and needle in a person’s lap without a warning. Especially me. Don’t do that to me with needles. I work hard to decrease my anxiety and it takes a lot of preparation, dropping a needle in my lap doesn’t help anything, especially right before I’m about to be stuffed in a small machine.

“Are you sure you have the right patient?” I asked. “I was told this would be a no contrast MRI,  just lots of breathing.”
“Nope,” she said without even checking. “Your orders changed and you’re essentially getting two MRI’s today.”
S* saw the sheer panic in my eyes and asked if I was okay. I stated that I’ve had some really terrible experiences with getting IVs before when I’m not prepared or hydrated enough and that this was a shock for me. I then went on to say I needed to be heat packed and needed a baby needle and they may need to contact the IV
J* interrupted and said she wished I would have told her this earlier so they could have worked on it already. (When would i have done this? When you forgot about me in the locker room?) She then said she would try a couple times and we would call the iv team if necessary.

Thank God S* took over and said she used to be an outpatient surgical tech and felt confident that she could get it on the first try. She asked J* to get a smaller needle, told me to lay down and breathe and try to relax.
She got it on first poke.
J* asked me why I was there, I explained that I have ulcerative colitis and the MRI is to check for bile duct cancer.
She asked when I went to the lab to treat my “colitis” and I replied it’s ulcerative colitis, not simply colitis, and I don’t go to the lab, I go to the infusion center and it takes a few hours for my medication.
She then shrugged, gave me ear plugs and had me lay down, strapped me to the table and put a brace like thing over my stomach. She said to stay as still as possible and said to listen to the prompts from the machine and that she would guide me through the whole time.
She left the room, and S gave me the panic button to push in case I had any problems. She put my arms above my head and a bolster under my legs and heard her leave the room as I  breathed deep and waited.  And waited. And waited.

And finally J came on the overhead and said the table is going to move, and in I went. I closed my eyes and took deep breaths.
The machine came on and told me to take a deep breath, let it out, take another deep breath and hold it. I held my breath while I counted, sometimes to 5, sometimes to thirty five until it told me to exhale. And it would make the sounds like the alarm and shake and beep. And I breathed. And this went on for what seemed like forever. My hands and toes were tingling and numb from being so cold, and I was started to get anxiety because I knew I had been in there a long time but had no concept of how much longer it would be.
J* came on the speaker and said I was doing great and they were going to start the contrast now, not much longer. I thought the contrast had already been in me. This must have been about an hour after we started. The contrast stung a bit as I felt it travel up and back down my arm again. I breathed, and tried really hard not to cry as I wondered why I had to go through this. I just kept thinking of my fiancé and going to California on our honeymoon and being somewhere warm and my family.
The machine had me hold my breath and breathe, hold my breath and breath for maybe 5-10 scans and then one scan lasted for maybe 10 minutes, no status update from the S* or anything. Finally it went silent. I lay there and counted to 100. Nothing happened. I said “hello? Can anyone hear me?” Nothing. Silence. My shoulders were aching, my feet were numb and my hands were tingling and I was starting to think they forgot me. My heart sped up and I tried to focus on remembering breathe. Finally she came on the machine and said one, maybe two more scans and we were done. Okay. I thought. Can’t be more than 5 minutes. I can do this. And closed my eyes again and breathed.

I heard the door open. I’m done!  I thought. I made it! And I looked up and backwards a to see S’s face. She said they entered the numbers in wrong and needed to redo the last 4 scans. (Wtf?!) She asked if I was okay and I said not really. I’m freezing and really uncomfortable and ready to get out. She felt my hands and said they were ice cold and got me a warm blanket to go over them and around my head. I asked her how much longer and she said about 15 more minutes. I breathed feeling the tears form and said okay.
I made it through the next 15 minutes dreaming of vacation and going through everything I am thankful for. And crying.
Next,  it was silent again for a few minutes I stretched, and waited thinking finally (again) it was over.
Then J* came in and said okay hun we have a few more to do, we can’t seem to get the machine right but you are doing just fine keep staying still, ok?
I was done. I had been in there for who knows how long at that point and this was the third time she said it would be one more time. I said nope. I’m done. They can use what they have at this point. 
So she left the room and talked to whoever and then the machine scooted me out and said she said well I guess it will be good enough. I was shaking through my whole body. S* came in with a blanket and wrapped me up. She then took out my IV and realized J* had taken away the cotton balls so there was blood dripping down my arm. S* explained to me what had happened during the scan and that I had been in there for almost 2 hours and was very strong. She said it was a very hard test, essentially two tests and I did great at staying still. She apologized for how long it took and that I wasn’t prepared for it and walked me to the locker room. It was 10 pm by the time I got to the locker to change my clothes and then had to wait another 20 minutes for the cd to be printed. I called my fiancé in tears, and drove home on the snowstorm.

If you read this whole thing, thank you. I wrote this in hopes that someone else preparing for an abdomen/bile duct MRI will know what they’re in for. So they will know it’s not a 45 minute scan, it’s about 2 hours. You will have an IV, you will have to hold your breath a lot and you should wear really warm fuzzy socks. Ask for extra blankets. You might not think you’ll need them when you get in there, but it only gets colder.  Don’t be afraid to hit the panic button if you need a break. Have someone there to take you home because even if you think it’s no big deal, the reality of it is you could benefit from the support.
And wake up in the morning feeling thankful. I woke up today thankful for my supportive,  loving fiancé who made me tacos and paleo tortillas and kept the warm and waiting for me to get home. I’m thankful for my health insurance that allows this test to happen. For my family. For the sun being out today. Let the experience remind you of what you have and what you are capable of. Don’t let how someone else treats you rob you of joy. You are more than a patient in a machine. You are a person,  and I bet you’re an amazing person. Remember that.

Sparks of Hope

It’s been 52 weeks since my first remicade infusion. I’m rarely rush to the bathroom anymore. The blood that used to show up every time I went has taken a hike. Bloating and gurgling still occur, but rarely. Mostly, and I feel like I should knock on wood and jump into my bed and hide under the covers as I say this, mostly I feel good.
I’m not cured. My life is no where near where it was before. My diet is very restricted. I don’t drink. I carry sanitizer everywhere and avoid sick people because my immune system is suppressed. Sometimes I feel like I’m waiting for the other shoe to drop.The remicade could decide to stop working at any time. I don’t know what will come next.
I’m tired a lot. I tire easily, especially at large social gatherings. It can take me days to recover from long weekends like this.  But the important thing is, I’m able to attend those gatherings. The important thing is, I may not have my life back in the way that it was before, but I have a life again.
This brings me to the reason for this blog post. I’ve spent a lot of time thinking about how I want to move forward with this blog. I’ve met some incredible individuals that I want to keep supporting. I want to keep a part of this community of fighters. I’m not, however, an IBD advocate. That role is currently filled by some superhero and ninjas and doctors and your every day patients and they are ROCKING it. I will happily retweet and comment and like their articles and will continue to refer people to their websites, but I’m not one of them. I don’t have the knowledge or time to research for accuracy. (I’m not sure these people have the time either but they somehow continue to find a way,  thank them for that!).  I don’t have the answers, but I will gladly point someone in the direction of someone who does, and cheer them on along the way.
What I am is learning to live with my disease. And I am so full of thankfulness and gratitude for this second chance at life. At my last meeting with my general practitioner, after looking at my labs from a year ago, I was told that I should have been dead. I. Should. Have. Been. Dead.
I’m not dead, clearly. I’m alive and fairly well and given a chance to really truly enjoy my life. I just turned 27. I’m learning to do a handstand away from a wall. I go for long walks. I read books. I watch sunrises and sunsets. I go to garage sales  with friends and host cookouts and am getting ready to be married in a year. I hold babies and laugh and cry tears of joy because I can.
And I want to spend this 27th year of life paying it forward. I’m so blessed and so grateful for this life and I want to bring this sense of joy to everyone I can. I know that I alone can’t cure IBD or any autoimmune disease. But if I can make someone else smile, and maybe they feel the need to pass it on, then I can do something. I can do something. Doing something keeps me hopeful that it will lead to something greater.
So, the next year I will be focusing on a specific “hopespark” or random act of kindness each week for the next year. Follow on Instagram and twitter #52weeksofsparkinghope  and I’ll be documenting it here weekly. Stay tuned for next week and see what I’ve been up to!

Sparking Hope Again

I want to apologize to you all for not posting the past couple of weeks. I didn’t want to do a post because I wasn’t feeling true or all that hopeful, and I didn’t want to force it.
When it rains, it pours and usually for someone with an autoimmune disease,  it flares.
I had a family emergency during week 6, and week 7 started experiencing some nasty symptoms that hadn’t appeared since May. When I saw the blood, I immediately started sobbing. No, no, no, no, no. This isn’t happening again. I sat on the bathroom floor and cried while my dog licked the tears falling from my face. I was crying so hard my fiance thought I was laughing. I came out of the bathroom and he saw my face and jumped up. I couldn’t speak enough to tell him what was wrong between crying so hard,so he just held me for a while until I could get it out.
It’s back.
I wasn’t prepared for that type of reaction from myself. I can’t remember the last time I cried that hard. the memories of being in the hospital came flooding back.  All the pokes, the unanswered questions, the pain, the steroids, the side effects. I wasn’t ready to go through all that trial and error again. To miss out on the world again.

While I blabbered  on about everything going through my head my fiancé reminded me to stop and just take it one step at a time. My next infusion was in 5 days. Maybe it’s just triggered from the stress of the previous week and being so close to refill time. I wasn’t in a lot of pain. No urgency. Just blood. Terrifying, but just blood.

So, I’m taking it day by day. I’m praying. A lot. I got my remicade infusion on Friday, and the blood has diminished,  though not completely gone yet. But I’m good. I’m taking time away, and I’m taking care of myself. I’m getting my hope back. Spark by spark.
For the next two weeks I have nothing planned but sunshine and relaxation. No work. No negativitiy. No anxious thoughts are allowed. Only love, and gratitude, and laughter are welcome here.
I’m going to be writing down three grateful moments everyday, to keep myself accountable. I’ll post them for you on Sunday. I need to hit the refresh button over here so I can keep bringing the hope to all of you. I’ll be checking in on twitter and instagram,if you need anything at all. Thanks for your support. You all mean the world to me.