Every Setback is a Setup for a Comeback

I try my best to always stay positive and I’m really trying my hardest right now, but it’s tough. Our healthcare system in the USA, when it comes to receiving medication, sucks. On the morning of my 31st birthday, I was told by my neurologist that they had received my first official denial from my insurance company to receive Spinraza(the first ever treatment for SMA). Today, I received the letter in the mail. It wasn’t a surprise, but my heart still sunk. I’ve waited 30 years for a treatment to become available. Now that it is, I have no idea how long it’ll be until I receive it and all I can do is wait. The problem is that the FDA approved this treatment for all types, when on paper, through the clinical trials, they had the official documentation that it works for Type 1. So, you would think everyone with Type 1 would receive it within a week after the approval, right? No, lives were still lost because of protocols, insurance coverage and all of the other by the book bullshit. What’s wrong with humanity? There’s a drug that will help people live, give people a better quality of life, just give it already. Keep dreaming I guess. Also, it’s priced way too high. $125,000 an injection and you need 6 doses in the first year. Every year that follows after, 3 doses. So, insurance companies aren’t going to put out that kind of money when they don’t have the on paper, official documentation, that they need. Now that I vented and got my frustrations out, I will say what I’m grateful for.

There are insurance companies that are approving for all types and for those who are getting approved, I am so beyond happy for. Especially my cousin!!! Who gets his first injection this week. I am so excited to see what this does for him. Like I said to him, Cousins Cruisin’, halfway there! The videos that I’m seeing posted in the Spinraza group, blow my mind. It’s truly a blessing to get to see a treatment make people stronger, achieve milestones that would be impossible otherwise and to see it working for all types. I just wish it was available for all.

I would say this year has definitely tested my patience. Sometimes I just want to scream, but I hang in there, keeping in mind that even though I haven’t received the treatment yet, I’m lucky. Lucky just because of the fact that there is a treatment to be waiting for. More importantly, lucky because I have the best support system, while I wait. I’m lucky to have an amazing neurologist who emailed me right away that he was already working on an appeal letter. If I get denied a second time, I start the screening process to receive the treatment through Biogen. That’s what I’m being told. Every setback is a setup for a comeback. My time will come. Thanks for reading and as always, thank you for your support.

Sunday Bumday

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Hi everyone! Just thought I’d put an update out there on this bout of bronchitis. You know that scene in Zoolander where Derek has that whimpy cough and well, he thinks he has the black lung? That’s my cough when I’m sick… hahaha ok maybe not that weak, BUT pretty close. I just think of that and it cracks me up. Anyway, it has been a long week of ups and downs although I got very lucky. It was one of those sicknesses that I caught early enough, it didn’t turn into a hospital stay and I was able to recover comfortably at home and still am. For that, I am so grateful. Yesterday, we had already planned to have a spa day at our house. It was kind of up in the air with everything going on, but we just went for it and I couldn’t think of a better way to spend a Saturday when you’re not feeling like yourself. It was low key and perfect. A nice day with some lovely ladies that lifted my spirits. Going to keep this short and sweet and just say that I’m on the up and up! Feeling a little better and a little less congested each day… I’ll take it. Hope you all have a nice, relaxing Sunday and enjoy this weather. Thank you for reading:) Much love!

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!