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 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.

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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,