I Miss missing You

Do you ever listen to a song that makes you hold your breath? Something about the melody or the lyrics ring so clearly into your soul that you feel it physically ringing throughout your entire body. The song might remind you of someone you hadn't thought about in a long time and you can feel this dull pain bringing forward an empty place in your heart you'd long forgotten about. Maybe it was an old relative or a friend or lover that slipped your mind after all this time and suddenly a picture of them placed itself right at the front of your memory commanding your attention.

I've encountered this pain recently, but in a weird nostalgic way. Instead of remembering some old lost friend I was reminded of myself, this person that I used to dream of becoming that somehow through the years fell through the cracks of my mind. The dark days of my life let my mind become clouded by someone I never thought I would become. When we're children we dream of what we'll become but now that i've started reaching that age I've realized that is the entirely wrong question. In all of my dreaming of what i would become somehow i'd forgotten to dream about who I would become.
I was listening to a Fall Out Boy song earlier today and I came across their song Miss Missing You. Now I'm a nostalgic type, I tend to fall in love with anything that can bring back feelings or images of the past I guess you could call it a weakness of mine. It doesn't happen often but I came across some lyrics that left me catching my breath.

"Sometimes before it gets better the darkness gets bigger,
the person that you'd take a bullet for is behind the trigger" Fall Out Boy

Sometimes it only takes a few short words bring your whole life into perspective. I heard the words and somehow my mind went to myself as a child. I had all of these dreams and ambitions and there was never a single thing that would keep me from making those dreams come true. Now that i've aged and learned about how life "really" works so many of those dreams I had have vanished. I've found myself more disappointed lately in how my life went and at times I try to find someone or something to blame. I usually end up blaming my health, after all it's the most realistic and obvious choice. But listening to that song somehow made me realize the person behind the trigger was me.

I can do more for myself than give excuses for broken dreams. The responsibility for the collapse of the worlds I once created is solely mine and the blame can't be shared. Those broken dreams don't make me a failure though, it's the mindset that it wasn't my own fault that does.
I am long on my way to what I want to be when I grow up, but it's never to late to start dreaming of who I want to be.
I still have so much potential in me, there is a whole solar system of ideas burning inside of me and it's time they got the chance to shine.

Orkambi update - How I'm handling the side effects

I began taking Orkambi a week ago today. I made the decision to take the medication knowing that there was a chance that I could experience severe side effects that could leave my health in a worse condition. Throughout the past year my health has dropped severely and if it continues to deteriorate I won't have long left to live.

Now I read all the paper work on the medication that I could get my hands on, but seeing as it is a new drug the information is very limited. When I began taking Orkambi I really didn't know what to expect, and boy has it been a long week!
Let me premise this by saying before I started the meds I had been feeling a bit congested, and I was dealing with some sinus problems spurred on by the air conditioning.
The first day I took the medication I was so wound up and anxious about looking for the side effects and making sure I was breathing right that I actually ended up having an all day panic/anxiety attack. It wasn't very fun and I exhausted myself. I have been looking forward to this med since they announced it's pre-approval, I was terrified that the side effects would take it away from me. That being said my exhausting day of anxiety probably made me sick.
The second day of the medication I had a lot of shortness of breath and coughing. Now I don't know how much this was spurred by the medication, or if I was experiencing a normal exacerbation. I had the normal symptoms of a regular CF exacerbation so that I how I treated it. I waited another day and I e-mailed my doctor and he sent me some oral antibiotics. The first time I've been on Oral antibiotics this year, the doctor previously would just directly admit me.
It's been a few days and with the antibiotics and I have already noticed a lot of improves, though I am not back to my baseline yet I hope to be soon!
Some other side effects I've noticed are that I sweat a lot. I am usually an oddly cold person, I wear sweaters all year and keep a blanket with me because I am always cold. Since i've started this medication all I do is sweat! All day and all night I feel like I am dripping sweat and it's so gross and I don't really know how to handle it because I've just never been a sweater. It's made sleeping almost impossible because I sweat all night, which leads me to my next side effect.
I am tired all the time! I've had almost non-stop fatigue since i've started the drug. I am not sure how much of this is a direct side effect of the med or if it's a side effect of the other side effects. I haven't been sleeping well since I've had an increase cough, over heating and the sweating. I don't want to put the fatigue all on the med, but I do think it is contributing to my muscle exhaustion. I haven't been quite up to do the running I was before even with the exacerbation, but this is getting better everyday!

Most of the side effects I've noticed are slowly improving and getting more manageable (or i'm just learning how to handle them). I am hoping that it continues to improve and that I can stay out of the hospital for another month at least! Optimistically I would make it to my next scheduled appointment of October 1st! I'll update my journey with Orkambi as it progresses, but for now I am going to go back to updating about my regular life again!
I really hope this medication makes a long term impact on my health so I can make real plans for the future without having to worry about being around to see them through. I am still focusing on my short term dream of designing some cute Disney themed clothes! It's not as easy as I hoped but it's going to be worth it. I hope people will love my designs so I can see them worn across the Disney parks while I'm on my trips!

Wish me luck on my journey!