Trying to be okay

I have a Pinterest board called “Quotes” (a very creative title, as you can tell), where I pin sayings or pieces of a book that reach out to me. I could spend hours repining quotes that relate to any aspect of my life or that I feel I may need down the road. I am also one of those clichĂ© people who makes a certain motivational quote my background in hopes that it will be a positive reinforcement in my life, even if its small.

A few days ago as I was scrolling through the endless amount of posts, there was a particular author that stood out to me with her writing. It was as if I was meant to see it at that point in time, I had just gotten done my doctors appointment and it popped up. Its a bit long so bear with me but I hope that maybe it will touch you in some way.

There is more to you than having to be the one who is happy for everyone else. There is more to you than having to carry the burden of your worries by yourself. You are free to let things go. You are free to take time to rest. You are free to be honest amidst all you are giving, you need some time to slow down, and breathe, and be renewed in the arms of grace.

Morgan Harper Nichols

Being happy for everyone else in my life has always been constant. Wearing my smile as a disguise to hide the demons I face. I’ve come to realize that it is in no way healthy. Being human is a beautiful thing and a part of humanity is pain, sadness, grief, frustration, anger; it molds and shapes you into the person you are today.

My doctor’s appointment was hard. My doctor and I made the decision to plan for a hospital admission this upcoming week. A few weeks on IV medications in hopes to bring me back to the healthy Caity that I yearn for (& to treat the staff that I had cultured for previously). It feels like an almost impossible task, for that Caity seems like a figment of imagination most days. But we decided this and while I was in clinic, I coughed up some lovely bloody mucus (sorry for anyone that is squeamish or disgusted, this is a life of a CFer).

In the CF world, our mucus is taken to be tested in a lab to see what bacteria/fungus that is growing in that specific culture. It aids in the treatment you will receive along with knowing what exactly is growing in your lungs. For awhile, we didn’t know what we were facing when it came to me. I had cultured for many different things in the past such as MRSA, pseudomonas aeurginosa along with some other bacteria, and MAC. Mycobacterium abscessus, otherwise known as MAC, is a group of rapidly growing, multi-drug resistant non-tuberculous mycobacteria. Basically it is a fungus that is capable of living in any kind of harsh environment and as stated in the previous sentence, it is highly drug resistant.

The treatment of this fungus is a long period of around 6-12 months of hardcore medications, 3 to be exact; but it depends on the case. Since this fungus is rapidly growing and hard to kill, it has to be treated all at once (hence why there is a long period of treatment). Doing it any other way, will just allow the fungus to adapt and be impossible to eradicate.

Now away from the science talk, when they tested my most recent bloody culture; it came back positive for MAC. I’ve tested positive for it before but it had been a very long time ago, we didn’t think that was what I was actively fighting. You want to prolong the treatment as much as you can to make sure that when you are treated for MAC, that is at its highest form and killed off completely.

My doctor and I had spoken of the treatment before but again, we had thought that it was no longer a major player in my lungs due to my cultures the past few months coming up negative.

Now with the results given, it is a route that we have to deem necessary for me. It’s a treatment plan that could consist of oral and IV medications for the next year. We haven’t officially gone into detail but that is how it is looking. These treatments include a lot of side effects that are extremely hard on the body and will limit me in every part of my life. To the point that full-time schooling may not be a possibility and definitely not being able to work or be as active.

So in finding out of all this news, I felt depressed and angry. I wanted to give a big F U to CF. And I let myself feel that. For once, I really let people be there for me; to ease the pain, forget about my problems even if it was for an hour or so, & to simply just have my back. I gave myself some time to grieve at a life that may change for awhile.


So I wrote this a few weeks ago, in preparation for my admission, during my admission, after, and finally when I was done my IVs. I would come here and write then delete. Over and over again. There is a level of standards that I hold myself to when it comes to my writing. This post didn’t feel enough to me. Theres always doubts that the words I put down will have no effect on those who read them.

If there’s one thing you can take from this all, it’s that you are capable of anything and you hold more strength than you know.

At this point in my life, I am taking one thing at a time. And I feel thats extremely important when you are dealt with more than what you think you can handle.

Life loves to throw curveballs. The unexpected and even the expected that can leave a hollowness in your heart. But its taking those tough, hard times and realizing that you are unbelievably powerful & strong.

You will get through the bad days. Days filled with the defeat, tears streaming down your face, the screaming, the throwing, the frustration, the loneliness; you will make it on the other side.

Sometimes you need the bad days to realize the amazing, good ones. Days filled with triumphs, happiness that leaves an ache on your cheeks, the cheers, the understanding, the love that pours out of your heart at feeling so blessed to be on this earth & to be surrounded by the people you love.

There is so much good in the world and you are a part of it. Expect the unexpected & know that whatever life throws at you, you are ready to catch it.

Love,

I haven’t been honest.

I have avoided writing. One of the things that I enjoy most in this world. A way to freely express myself and a way that truly enlightens my soul. I’ve been negligent with this blog and I apologize.

My smile has been fake. My “pretending everything is okay” has been pulled to an extreme in my every day life. I haven’t felt good or normal in over a year. Every day has been felt with discomfort and pain in one way or another. It’s left me frustrated and in a rut.

I have a doctor’s appointment tomorrow that will determine how I will move forward these upcoming months and next few years. I am nervous but I want answers. After relentless treatments with medications that seem to do nothing but give me false hope;

All I want is relief.

Relief from what feels like a never-ending dark tunnel. Days dragging on feeling breathless, the pain that resonates from the right side of my chest like a dagger, the coughs that make me close to vomiting, the sleepiness that I can never seem to shake.

In a way, I have become used to the pain that overcomes me everyday. It’s a “nothing new” mentality, just what I have to deal with.

I am twenty-one years old but I feel like I am ninety.

Everything exhausts me to no end. The simplest tasks feel as though I’ve run a marathon.

I have lost my positivity that I have held onto, so tightly my whole life. Due to agitation with never feeling well no matter how diligently I follow my medication and therapy regiment.

Writing this, is hope that I will break free from this strong hold of negativity that is strangling me. That whatever may happen tomorrow, will be for the best and that it will truly be okay. Everything will work out the way it is meant to.

I just have to faith and hope.

If you are putting up a facade, be open and honest with yourself and the people around you. It’s okay not to be okay. But don’t let that stop you, don’t give up.

For anyone out there that is stuck in a rut like myself, give yourself that little push. That push to keep looking onto the bright side even when most of your days feel dark.

It might seem like there is no point, because what could one more positive thought or action actually do? But I promise, it will be well worth it. You are saving a part of yourself. Preserving your wholesome self to be happy down the road. Putting effort into you.

Putting effort into your wellbeing will never be a mistake.

So please take care of yourself and do whatever you need to make your existence on this earth meaningful to you. I also just want to say if there is anyone out there who needs someone to talk to, my DM’s & email are always open.

Love,

**Major thank you to my boyfriend for getting me back to writing & giving me the support I needed**

Scotland

If there is a place that I love more than anything now, it has to be Scotland.

It is truly beautiful, inside and out. There is so much history hidden behind the walls and curves of every road. It honestly feels as though you are in a movie or a book. There are so many nooks and crannies; from alley ways to hidden walkways that lead to unique shops and cafes.

You can see the beautiful Edinburgh castle, resting on the edge of a cliff. Looking as if it is about to tip over into the picturesque town. Brief glimpses of the castle pours through the spaces in between buildings.

When we had first gotten here, a smile was plastered to my face. I couldn’t help it, Scotland has a way of doing that to you.

So far we have gone on the infamous Harry Potter tour (which is free by the way), a night ghost tour, Edinburgh castle, New Town, and Old town.

You could sit in a cafe, reading, writing, and even people watching for hours at a time. The streets are filled with stores and covered with merchants in small tents. You also have the entertainers doing magic tricks, playing instruments, or simply just having a very cute dog with sunglasses on.

We are leaving tomorrow and we have sadly only been here for one full day but it was completely worth it.

I am in shell shock and wish endlessly to spend more time here.

Love,

Caity

P.S. here are some pics from the trip đź’› https://breathingwithcaity.files.wordpress.com/2018/07/img_2336.mov

A Whole Other Level of Happiness

To think that only a few weeks ago I was just getting out of surgery to the present, where I am at the most beautiful city is completely insane.

So much has changed in just the little bit of time and I couldn’t be happier. I have only been in England for a total of 5 days and have experienced more than I ever thought possible.

I have met the loveliest of people. All of the people I have met from this program are so kind and loving. We all just have this want to explore and travel as much as we can.

Honestly, I was completely apprehensive about doing this program because I was going alone. But I am so happy with the choice I made. There’s this new level of independence and responsibility that is starting to grow on me. And I wouldn’t have been as open to getting close with other people.

I just scheduled a flight to Scotland with three other amazing girls! How crazy is that?

All of these beautiful people were brought into my life from this experience and have already changed it; I couldn’t be more grateful.

We have done so many things within London and I will go more into detail in the next post but for now, here’s the video I made from the past few days!

Love,

in London, England

Toronto, Canada (Day 3 and 4)

The journey continued into our two final days in Canada. The third day was spent exploring Toronto as much as we could. While the fourth day we squeezed in one more sight before heading back home.

On the third day, we went through the Fashion District, Kensington Market, and the Distillery District. The beginning of the day was spent in the Fashion District where we went in a bunch of different antique places and vintage clothing stores. To see all the different fabrics and designs dispersed through the clothing of different stores was fascinating. We were always welcomed with big smiles and questions as to where we were from.

From there we went to the Grafitti Wall. It was below zero but we were able to get a few pictures and tried to admire the artwork as much as we could. We also spent some of our time at one of the biggest malls I had ever been to, the CF Toronto Eaton Centre.

Our next stop was the Distillery District that had a plethora of shops and art. We had stopped in a building filled with art that had four floors. There were artists that had their doors open so people could come and admire their work. We talked to a few artists who explained their pieces to us.

The final night came to an end in a Mexican radio bar with Modelos, quesadillas, and some churros. We packed the car ready to leave for the next day. Upset that we couldn’t spend more time in a place where we made so many memories and laughs.

We woke up at 7 am prepared for the long drive but of course, we had to go to one last place to adventure; Niagara Falls.

Let me just tell you, if you have not been here before, it is a must that you go some point in your life. It was the most breathtaking view I have ever seen in my entire life. Driving up the road to see the very edges of the falls and the blue hues that resonated, was astounding

It was so beautiful.

We walked our way through the path, eager to see Niagara Falls in its entirety. All you could hear was the crashing of the water. You felt complete and utter peace. The water was an unexpected teal blue with darker hues interwoven within it. An eerie mist arose from the falls and made it even more breathtaking.

After seeing that, we picked up a few things from the souvenir shop and continued our eight-hour drive.

Canada, thank you for all of the amazing moments you gave me. You were the first place I traveled to without any supervision. You were the place that truly threw me into needing to travel as much as I can.

Don’t worry, I am coming back. Whether it’s this summer or next year, I can’t wait to make even more amazing memories with you.

Love,

I Want To Travel The World

If there’s one thing that I want to do in life, its to travel the world.

I want to experience every culture, see every country, and be in the shoe’s of others lives.

I want my perspective to change and grow.

I want to be amazed at all the beauty that lies within the roots of humanity.

To see how different we are, yet how similar.

To meet people who influence my mind in ways I didn’t even know were possible.

I want my breath to catch at the sight of something so magnificent.

I just want to live life so fully that I look back later in life and say, “God damn, was I lucky”.

I want an endless amount of memories from my travels, no matter how far or close they may be.

I am ready to take on this world and travel across it, as much as I can.

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The Super Bowl

The Eagles winning was the most amazing thing to happen to Philadelphia.

The pure excitement that came from people was contagious.

People crying, people screaming, people who were just so incredibly happy.

Although I am not a true Eagles fan (family raised me into the Giants), my heart swelled with warmth looking at everyone around me.

A smile never left my face and I made so many memories in just one day.

My friends and I decided to go to Philadelphia right after they had won the Super Bowl. We were apprehensive at first because we saw it was crazy from the news and the Snapchats people posted.

But you only live once, right?

These memories would be nothing without the amazing people in them. I am so fortunate for every single person in my life.

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