Friday, January 29, 2016

3 Months on Orkambi

**Orkambi update** 

"On particularly rough days when I’m sure I can’t possibly endure, I like to remind myself that my track record for getting through the bad days so far is 100% and that’s pretty good.” 

I did it!! I made it to the 3 month mark on the full dose of Orkambi! Phew... This med has been really tough but I think I am finally seeing side effects subside. Really the only thing I still experience is that dang shortness of breath and my right lung is still having this random popping pain. Everyone that I have spoken to that is on Orkambi has said after 3 months they started to see side effects subside and some positive results. So I'm hoping that is the case. I have been having some really good days where I don't have and side effects, and then of course I tend to over do it on those days and then I need a couple days to recover. I can always tell when I over do it because that is when that pain in my lung is the most painful. So looking for a way to balance it all out.... Baby steps!! 

I think it's still really hard to tell any changes maybe because they are all happening gradually. This last week I have been getting out mucus plugs from my lungs, which is HUGE! They are basically petrified mucus plugs dark and harder than a rock. Who knows how long those have been down there?! Of course I took photos and if you didn't get a text from me of my petrified mucus that was the size of a watermelon seed well, you're welcome. ; ) Ha ha. So fascinating and definitely worth celebrating!! Definitely a great step in the right direction. 

My next appointment is in March and I'm very hopeful things will be great. I'm excited to see what I will blow, but don't want to focus on the numbers too much. I'm just focusing on each breath I breathe, how I feel and how far I've come rather than how far I have left to go... Literally one day at a time! 
Breathe out Love! Xo❤️

Thursday, January 21, 2016

You Have To At Least Try

Today marks 11 weeks on the full dose of Orkambi (update coming soon). I was reminded of this post I wrote exactly one year ago today. Re reading this post has even more meaning today as it did one year ago. My thoughts are still very much the same. We are not obligated to do anything we don't want to do, but why would we not try to better ourselves or others around us simply because we can? I'm grateful for my struggles without them I wouldn't have found my strengths... Trust your story. 

Jan. 21 2015
I scrolled by a quote yesterday, I have read it over and over again... For some reason it really resonated with me and at the same time it really rubbed me the wrong way. The quote is... 

"You are not obligated to do everything a healthy person does. You are not obligated to be an inspiration. You are not obligated to hide your illness in order to make other people comfortable. You are allowed to know your limits. You are allowed to have bad days. You are allowed to stay in bed if you can't get up to do anything but go to the bathroom. It is not your fault if other people leave you for your illness. It is not your fault you are sick. You don't have to apologize for something that is out of your control."-Unknown                                            

Everything about this quote is true... I have even had some of these thoughts and for a split second I will think about it, but I wouldn't give them any more thought than that. I am sure I will have some of these thoughts in the future, and maybe even one today. I will not hide my illness but I will always tell you I am fine, this is not to make others comfortable but to make myself comfortable.... Why dwell on bad thoughts or negative energy when I can guarantee you it could always be worse. I know I was given this life because I am strong enough to live it. 

So yes I AM obligated to TRY and do everything a healthy person does. I WANT to be an inspiration. I do know my limits and I FIGHT to surpass them every day. Everyone has limits everyone should try and learn and grow and become stronger from them. Of course I'm allowed to have bad days and believe me I do. In fact everyone is allowed to have bad days, I promise you tho on your worst day there will always, always, be good. 

Having a disability doesn't give you a free pass to be mean, lazy, or rude. In fact it should make you more humble, sincere and more compassionate, it gives you a understanding and a drive to BE and to DO and of course LOVE more. I will never apologize for my CF it's made me who I am and for that I am so very grateful. If someone has a issue with your disability it is clearly just that, their issue. 

So today I will BE me and I will DO my very best. I will LOVE more and I will hold my head up high, smile, and fight.... I will continue to be strong and I will sing!!! I will sing so loud, and maybe even do a lil dance and you better believe it will be to a Madonna song!!! Breathe out Love! Xo