Moments.

Heres a question for you, when is the line crossed between bad days and depression? At what point do you realize that maybe you arent moody? Maybe its clinical. Most importantly how can you fix it?

My week this week hasnt been spent sitting bed looking longingly out the window, and i havent once had my dog whine at me with his leash in his mouth waiting to go for a walk like the drug commercials depict. I dont take a pill and suddenly im playing with the kids and playing fetch at the park it doesnt work that way. I smile i laugh im me in every way from a bystanders point of view. Internally i feel nothing, i feel the world spinning away from me, i feel my friends creating a gap that slowly enlarges with each fake laugh i try to force out when were together. 

CF kills my lungs, it destroys my pancreas, my kidneys are shot and my liver is hanging on for dear life (although my days of parties and bar hopping probably had a bigger impact on that than CF ever could). I cant blame CF for this recent mental unbalance and constant need for reassurance directly but i suspect it played a part. 

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loving a Mississippi river view on a beautiful morning!

I have brief moments like driving through to Iowa for a wedding and passing fields of wild flowers that seemed to stretch for miles. Old farm houses that took me into daydreams of coffee on the expansive front porch bright and early. I passed river trails and nature preserves and was immediately engulfed in the pure contentedness i feel when walking through endless trees feeling like the only one in the world at the time. Listening to only the sounds of birds and the occasional crackling of sticks from something i must have startled. 

I have moments when i see my little sisters (which is too far and few between for my liking) and the laughter becomes genuine. Spending weekends being totally comfortable with who i am because while we dont see each other often i feel a comfort in being in their presence. I feel like they accept me and all of my quirks. "I like you because your so weird." said Jenny a few weeks ago, and i felt that i am weird, im different from most, i dont have the views and opinions of most and my hobbies and interests are not considered normal, yet this was the greatest compliment ive ever Enjoying a received

I have moments where one person can make me feel like a celebrity in my own little way. I have a best friends Grandma who was so genuinely excited to meet me it melted my heart right out of my chest. Enjoying a glass of wine and a conversation with her lifted me up in a way i havent felt in some time and i truly hope that i see her again. 

These moments are the ones that keep me on he ground. When my mind races so fast it could propel me straight into the atmosphere. Its going to be work. I need to be proactive and put myself out there, i need to surround myself with these seemingly small yet grand plans that lift me up. Pills help, im not saying theyre worthless but its up to me in the end. I know im strong, i know i have potential, and i know that when motivation strikes im unstoppable in every way. My last few weeks have been a roller coaster, but im never one to turn down a ride. I will beat this, i will persevere, and i will win. 

I guarantee this.

Orkambi and Health Update

The last time i was at transplant clinic i talked to my doctor about how well my lungs were doing without the bronchial valves i had to fix my recent lung collapse and we agreed that if i can get my lung function over 30% then i can go on a hold from the transplant list. Well my next appointment is in March but 3 days ago at my regular clinic I blew a 31%!!! (i only got above 30 for one out of 3 but it still counts!!) I am beyond excited with my progress! From breathing with one lung to possibly going on hold, from about 105lbs to 124lbs, im kicking ass left and right!!

Blowing away the docs!!! (pun intended!)

Except for the past few days....Ive officially begun taking Orkambi. The newest drug to come out for CF. While all the studies were done with people over 40% lung function, some with lower numbers have still seen results. People warned me the side effects were brutal in the first few weeks and they werent kidding. Sweats, chest tightness, shortness of breath, body aches, coughing up an amount of mucus that i didnt even know could exist in a single body, no sleep, and lower effectiveness with my anti anxiety, anti depressants, and sleep meds. Luckily i felt only half as bad as day 2 so im pretty confident i lucked out on the side effects front!!! For a shot at even healthier lungs i can handle this but i am scheduling an admission in the next week for a tune up. I havent been feeling the best and i wanna catch it while its early so it doesnt turn into anything more serious.

Feeling Orkambi at its worst!

All in all im doing really well thanks to a new diet, lots of exercise and workouts, and being on top of my meds and airway clearance every day. After the side effects wear down and im done with iv's theres no telling what my numbers will be, but im pretty confident in this new med and myself and when March rolls around ill be ready!