Trying to be okay

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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 cliché 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.

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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**

I’m Back

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I have a bit of anxiety typing right now. I haven’t written on this platform in so long, I miss it but also fear it. I guess I should start from where I’ve been these past few months.

I have been struggling immensely with just feeling myself again. I went through something pretty life-changing in the beginning of this year. It left my heart torn open and my mind in a place that I never thought possible.

I hope to open up about that in a post. For now, its better left unsaid until I tell all of the people I love.

So these past few months have been filled with a lot of healing, going to therapy, pushing through school, and just trying to find me again. Some weeks flew by and I barely had any idea what I did in the time of those weeks, I was on such auto-pilot.

All I would keep doing is telling myself to push through until school was over. Then I could have my mental breakdowns, sleep for days, and cry for as long as I wanted (all not good things to do but at some points is needed).

I would say up until May, when I finally finished classes and finals, is when I could actually look at my mental health for once.

Although therapy has been such a great help in finding the source of my issues and consistently talking them through; I still felt this gaping hole in my heart. I felt that something had been taken from me, an innocence. A piece of me that I wouldn’t ever get back and I have had to learn how to mend that emptiness with love.

Love from my family, friends, boyfriend, and from my self.

It is so extremely important to take care of yourself. I never really realized how important it was because I always focused on taking care of the people around me. But going through what I have this past year, I have come to see that you need to make yourself a priority. Taking care of myself is essential and everyone follows afterwards.

I’ve been trying to implement self-care into my routine. Whether it’s doing yoga/meditation every morning, writing as much as I can, or just taking it easy on myself; I try. I tend to always be so hard on myself, if you are like me; here is your sign to cut your self some slack.

You are amazing, beautiful, intelligent and bad-ass. Treat yourself and love yourself. Know that everything you are doing is more than enough.

I hope that reading this post will make you think about yourself. How you can add things to your life that make you happy or make you feel good. Because you DESERVE every bit of it.

Love, 

New Year with a Nomination

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As the new year begins and the one year anniversary of my blog officially comes, I am so endlessly grateful for being nominated for the Sunshine Blogger Awards.

Rules:

  1. Thank the person who nominated you and provides a link to their blog (https://artandroses.blog/) <— she is an amazing blogger who creates the most amazing art while also giving a glimpse into life with cystic fibrosis
  1. Answer the 11 questions asked by the blogger who nominated you
  2. Nominate 11 other bloggers and ask them 11 new questions
  3. Notify the nominees about it on one of their own posts
  4. List the rules and display the Sunshine Blogger Award logo on your post and/ or your blog cite
  1. Why did you start blogging?

I have always confided in books and journals. Writing my deepest and personal thoughts onto the pages of any notebook I could find. Writing has always been where I feel safe. Especially when I was diagnosed with cystic fibrosis, it became my coping mechanism; my only way to get out all the frustrations that I held so deeply. I wanted to share my life and thoughts with others in hopes that it would relate to at least one person. To change at least one life with my words is my biggest dream.

2. Favorite quote?

I am honestly one of those people who hoard pictures and screenshots of quotes in my phone and throughout my room. To pick just one is one of the hardest questions you could ask– so I will leave this here, that perfectly fits my life right now.

“One day, you will understand that happiness was always about learning how to live with yourself, that your happiness was never in the hands of others. It was always about you. It was always about you.”

The Strength In Our Scars by Bianca Sparacino (AKA the best book EVER)

3. What inspires you the most?

People and traveling. Whether its meeting new friends or even strangers, every connection changes you in some way. Each person you meet has such a dramatic effect on who you become and the decisions you make. Even if you may think they only took a small part in it all. People inspire me; their thoughts, their aspirations, strengths, weaknesses, and their life stories. Traveling inspires me immensely. I can bet you, any place you go to/visit will make you see things slightly different. There is so much to learn from seeing different cultures, religions, and customs.

4. What’s your favorite hobby/passion?

It definitely has to be writing and creating videos. There is still so much that I want to improve on and perfect. I hope one day to make a film about my life. I hope to also write a book one day.

5. Do you have any pets? If so, what kind?

I have an overweight Dachshund (hotdog dog) named Remmy. I also had another dog who passed away this past summer, Mia. She was the embodiment of an angel but in dog form. Favorite quote?

6. If you could go anywhere in the world, where would you go?

I don’t know why but I have this strange pull towards Ireland. I have a lot of family that lives over there. I would love to see where my grandparents and my great grandparents lived; where I come from. I just know that I would absolutely love it there.

7. Who do you look up to?

My mom. I never met someone who has shown so much resiliency throughout their life. My mom has dealt with two kids with cystic fibrosis so fiercely and kindly. She always shows so much love and compassion for every person in her life. She gives herself relentlessly for the people she loves. My mom is quite literally my hero. I would not be able to live this beautiful life without her constant support and love (+ her amazing chocolate chip cookies).

8. What’s your favorite book, show, or movie? Why?

If you couldn’t tell from my favorite quote, The Strength In Our Scars by Bianca Sparacino, is so beautifully created. I’ve never read a book that has touched me as deeply as this book. It has helped me through so much; heartbreak, self-discovery & growth. There are too many TV shows and movies that I love so I can’t pick.

9. Favorite place?

The beach. Ocean City to be more specific. It is my safe haven. If I am going through a lot in life, I go to the beach and just try to find peace with my own thoughts. The waves crashing always has a way of soothing me completely.

10. If you could bring back a fictional character who would you chose?

Elizabeth Bennett from Pride and Prejudice.

11. Whats your favorite kind of music and why?

My music taste is a mix of all different genres but my most listened to would have to be alternative.

My nominees:

  1. Salty With Style
  2. Susan Arnold Books
  3. Inspire; to breathe
  4. Bright Hope
  5. Priceless Breathes
  6. Sleep Sam Reads
  7. Living the Q Life
  8. DeeScovered
  9. Yellow’s The Word
  10. Lucybixby
  11. Salty Maddie

Questions:

  1. What made you create your blog?
  2. What made you smile today?
  3. What would be one thing that you would change about society?
  4. If you could teleport anywhere in the world, where would it be?
  5. What is the biggest lesson you have learned from life?
  6. If you could give your younger self, advice, what would it be?
  7. If you could have a super power, what would it be?
  8. Your favorite place that you have traveled to.
  9. What has deeply changed you?
  10. What has been the happiest moment of your life?
  11. If there is one person you could bring back to life, who would it be and why?

Finding Ourselves

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I’ve had this predicament ever since I started my teenage years. As a kid, I always was just who I am.

I never questioned how I acted or how I felt. If I wanted to go out without brushing my hair or even my teeth, I wouldn’t have a second thought (even though my mom would not let me leave the house without doing the two). I would wear whatever I wanted despite it being completely mismatched and downright embarrassing. I would dance and sing, up and down store aisles with a big smile plastered on my face while my mom shopped and not have a care in the world. I was just completely and utterly myself. 

But once you become a pre-teen and start going through puberty, it’s like a switch goes off. You start analyzing every feature of your face and body.

Noticing your crooked teeth or how you have a little extra skin on the side of your hips.

You start comparing yourself to others. With not only physical appearances but their minds.

You begin to change the way you think to fit everyone else. You no longer want to be yourself but a clone of what you see as ‘perfect’. And that’s when you lose yourself. This specific part is just the beginning stages. 

Once you try that and find that it’s not a path worth following and that being yourself is the only key. It’s then growing comfortable with who you are and really discovering yourself entirely. 

And to do that, it honestly takes time and a lot of experiences. Experiences that shake you to your core and make you realize that sometimes you are the only person that you can rely on. Moments where you see how amazing you are and how fortunate you are to have a beautiful life like this.

You need a mix of the good and bad to show what life is really about. 

How you act, the mistakes you make, and all the in between show you, yourself. 

You aren’t perfect (If you think you are, you may need a slight wake up call).

Nobody is perfect and as time passes and things go on, you realize that.

You accept the fact that you cry a lot. You accept that you are sensitive and emotions come over you like massive waves that pull you down. You accept that you’ve been in the wrong. You accept that you lash out and hurt the people you love most. You accept that you are human.

You will stumble and fall but you will also get up and conquer. 

You learn and learn and learn. 

I don’t think you ever truly find yourself until you are old and grey.

When you have seen the ugly and beautiful parts of life that leave you breathless. After seeing the life you made for yourself and all of the people you have loved throughout it; you welcome who you are with open arms.

Because every moment, every triumph, every fail, every person you meet, has led you to where you are; to the person, you were meant to be.

I am still figuring out who I am and I know it’s going to take a long time but I’m here for the ride.

Love, 

overwhelmed

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I hope that whoever is reading this feels a sense of calmness in their life. A sense of relief or happiness. It could be from the smallest of things in life; finally finishing exam week or seeing that life-long friend that you hadn’t seen in a while. Any brief momentous happiness, I hope it captures you today.

This week has left me at a loss for words. I am trying to appreciate every facet of my life. The fact that I am here, living and breathing; that I have family & friends; a roof over my head. But I am still left befuddled.

Most nights now since the hospital, has been spent with widened eyes and fears that I will never get my life together or that my life will not be what I have always wanted. I stay up with tears in my eyes wondering if this aching in my chest will dissipate or will turn into my nightly routine.

The things that used to make me so blissfully happy, don’t seem to do the trick. Everything is so unsatisfying and I have no idea what to do about it.

The people in my life tell me that it makes sense as to why I am feeling the way I am. I’ve been through a lot recently. It can not only take a toll on you physically but even more mentally.

What the doctors don’t mention to you once you get off of your IV antibiotics and out of the hospital is the depression that latches onto you. You don’t seem to notice it at first because you are so excited to be free. You take ahold on every little thing you missed; driving, going out to eat, going out with friends, wearing whatever you want, being independent etc. But once you get off of that inch of a high, you are smacked in the face with reality.

Going back to the normalcy of life isn’t as easy. You are met with new qualms and challenges that make you want to crawl into bed and never face life.

I am trying my best and pushing through. Putting a smile on my face and taking every challenge, day by day. I will just continue to love endlessly and spread as much of it as I can and just hope that everything will work out in the end.

Love,

 

Health Update: Pushing Through

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I have neglected this beautiful platform that helped me through a lot this past year. It’s very easy to get caught up in life and all of the many other intricacies. It may also be because I have been creating a lot of videos on Youtube. I’ve never loved doing something so much (besides writing, of course).

So here I am, almost into my second week of IV medications but finally home. I spent 10 grueling days in the hospital and it was a lot, to say the least. I feel as though every hospital admission takes a part of me away. Slowly hacking away at my sense of self and love for life.

Yesterday when I finally came home, I went out to eat at Olive Garden and it felt so surreal. Surreal to be surrounded by people, people who don’t have masks on or gowns, people who don’t come in to take my blood pressure, people who don’t see me as a sick patient; just normal, living people. It was so strange, it was as if my mind couldn’t handle it.

I started off my hospital admission with pneumonia and right upper lobe problems, I was then started on a medication that I had a reaction to almost immediately. But things got better and eventually, we found a medication that actually worked, as in I didn’t react to it. I am not 100% positive that this medication is actually proving beneficial for my lungs. I mean, don’t get me wrong, I feel better. But not to the extent of feeling completely healthy.

So I am just pushing through hoping this week will show me more of a change.

Just got to have hope, I suppose.

Here are the videos I posted during my hospital stay if you would like to see them!

Part 1:

 

Part 2:

 

Part 3:

 

Love,