Breathing is a Luxury

Hi! For those who don’t know me and have stumbled across this page, my name is Kerri Costello. I’ve been debating lately whether or not to start a blog. If I did, what do I want to mainly focus in on? Well, as most of you know, on December 23rd, 2016, the first ever treatment for what I have(Spinal Muscular Atrophy) was approved by the FDA. It was a huge celebration of happy tears, but with our health care system, comes what feels like never ending protocols. So, here I sit, waiting to hear whether or not my insurance will approve it. I also sit here with another sickness and this is life with SMA(type 2). I want to document what my life is and always has been. Hoping, that one day, this all will change.
Friday night, I went out to the mall with my niece, Kylie. As everyone knows, she lights up my life along with my niece Avery and the rest of my family. As I got home, I felt something coming on and in my head I say, “Here we go again.” While sleeping through the night, I felt my throat getting more and more sore, woke up with it feeling swollen and said, “Noooooo!” Just like that… nooooo…. Now anyone reading this, who doesn’t know me, who doesn’t know SMA, is probably thinking a sore throat? Are you a little dramatic? The answer is it’s never just a sore throat. As the day went on Saturday, my voice was almost completely gone. Dad!!! Rescue me!!! So, Dad goes out, picks up halls cough drops, throat spray, honey for my tea and Motrin. We’ll call him Hero Dad. Along with Hero Dad comes Hero Mom, who helps me take the extra steroids that I had leftover from the last time I was sick. She is everything.
As we go into Sunday, the cough begins. Nooooo.. like I said, it’s never just a sore throat. The sore throat for me, is always the start of bronchitis. So, in comes the breathing treatments. Specifically, Xopenex, which opens up my airways when I feel them closing up on me. Hero Mom woke up in the middle of the night or we could say wee hours of early Monday morning to give me a breathing treatment after one of my scares of not being able to breathe well at all. Thank goodness for these breathing treatments. No, thank goodness for both the treatments and my Mom! I don’t know where I’d be without her.
Monday, I knew what I had to do. Time to go to the Doctor and get that script for antibiotics. I told the doctor what was going on and that I started taking my leftover steroids. He says, “What do you need me for?” Haha! Really, just the script. I can diagnose myself pretty damn good by now. In all seriousness though, I’d be nowhere without these medical professionals.
As I sit here on Tuesday, I’ll take sitting at home as a win. As bronchitis could easily turn into pneumonia and a hospital stay. I figured I’d start this blog now. To get my mind on something else and my thoughts out there. To show the good with the bad. I’m not writing this for sympathy. I’m writing this to give insight and understanding to my personal battle with SMA. You see, I’m lucky to get just one of these sicknesses a year. So, what do I hope to get out of Spinraza? One whole year of not being sick and I’d be so damn happy. I’ll take the slightest improvements. I just hope to see something. I’ll end by saying what I have said before. Breathing is a luxury. Any day that we’re breathing, without a sickness, without some type of assistance, we need to count our blessings. Thank you for reading:) Much love!

15 thoughts on “Breathing is a Luxury

  1. ivors20 says:

    Hi Kerri, I’ve been on wordpress blog for quite a few years, but never used it. Liked your story and understand your battles, and knowingly appreciate your hero helpers, mom and dad.
    Really not sure how this blog thing works, I suppose, like you I was going to reach out to people and inform them about my world as a carer back then. Maybe I could now use this medium to put forward some of poetry words, hmmm, I’ll have to study how it’s all done.
    Hoping you’re improving today and feeling more comfortable.
    Love. Aussie Uncle Ivor xx

    Liked by 1 person

  2. Barbara Majka says:

    I pray that your treatment is approved by insurance and you get the Spinraza soon. Better days are ahead for you sweetie. You are my hero! Love Aunt Barbie Xoxo

    Liked by 1 person

  3. Maureen Drumm says:

    This is a great way to get your life with SMA out there Kerri. Yes, you are a warrior. I hope people who struggle with this disease will join in the conversation. Love you dear niece. Aunt Reeny

    Liked by 1 person

  4. Kenny says:

    A day in the life…This story is G rated compared to a trillion others that you have been thru! Bigger heart then anyone times 10!!!ONE..❤️❤️❤️❤️❤️❤️❤️❤️PS I love you

    Liked by 1 person

    • kercos86 says:

      Hi Amelia! I’m glad you enjoyed it. This is exactly what I wanted to come out of starting this whole thing, to be able to connect with people who can relate, and open minds to those who can’t. Would love to chat anytime. 🙂


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