I have got to get onto a much better schedule for blogging, not only for my adoring 7 fans but for me too.
It’s been a busy year with mostly ups and a few downs. The changes I have made that are good for me is adding rowing to my treatment routine every night after my evening meds. So far I have rowed over 58kms since January 1. I even managed a 1km row at 7:06 which is a full :30seconds on my previous PR so that’s pretty awesome. I have also been Crossfitting in my home gym to avoid the flu and cold season. It’s made me a bit of a hermit but I am doing pretty well, health wise so its a trade off I am happy to take. I have been selling all my excessive belongings on FB and thats been fun…mostly. Miss California is a bit off right now. Slower to get up, a nagging leg strain and frankly just getting older and that scares the shit out of me. Every time I am on my phone mindlessly surfing I remind myself that a cuddle with her is 100% worth turning it off for. Her time is closing in. It makes me utterly sick to think of losing her. Mentally I have been pretty good. I have some outside challenges coming up that are wearing on me but they will soon be resolved.
I will tell you what I am struggling with though. Some of you may have seen in the news that there is a new ‘miracle’ drug that corrects the defective gene that causes CF. In many cases it is a miracle. Most of the 30000 Americans with CF are getting access to this drug that helps 90% of the CF population. The 3500 Canadians with CF will be lucky to get access to this drug by 2022. People are up in arms about this and I don’t understand why? If you are taking good care of yourself right now and don’t have a lung function teetering on deathly then you will be fine. So fucking relax.
I know its super frustrating watching the news feeds in our social media channels of those Americans getting the access and posting that they feel like they don’t have CF anymore. Yes, they are mostly people who already had an excellent lung function so I don’t take too much stock in that. The fortunate thing for them is that they will now get to live out a full long life if they continue to take care of themselves. Many need to go back to work or back to school because they have deemed themselves disabled for so long. It’s a good thing but still a big change. Doom and gloom has changed to bloom and prosper. For some of my friends with lower lung functions their increases have been smaller but an increase nonetheless. It all has created a shift in CF care. Gone are the days of arduous hours of inhales and constant need for IVs and inability to keep weight on and not being able to work blah blah blah. Well its not quite that cut and dried but its close for many. I know of a couple people in Canada that did get access either through the trials or for compassionate reasons and they are doing ok. Am I jealous? Fucking rights I am. I have worked so hard on my health for my entire almost 5 decades that I should get a chance at this opportunity too. I would be able to get compassionate support if the drug could help me BUT I am in the 10% that this miracle drug doesn’t help.
Yah, can you believe my luck? Its hard to push on when the deck is stacked against me. I don’t want a transplant. Its just another disease to deal with. Its another stretch of borrowed time. Its still difficult. Nothing about my life has been easy nor will it ever in the future be easy, in fact it will just decline and worsen. I honestly don’t know why I bother some days. No, I’m not going to off myself so don’t worry and I’m not depressed, I am just venting. Social media gives the illusion that we are all living these beautiful lives and its just not true. Life is beautiful but it’s also really hard. Not many people will post a shit day right?
I have to be totally honest with you and myself that its okay to be mad and feel like you got the raw end of the deal and its ok to vent just don’t stay there and I never do but after the 2500th insulin injection, the 1,000,000nth enzyme taken and the thousands of breathing treatments executed you feel very beat down. It makes me sad. I feel lost some days. I even feel hopeless sometimes. But then a smile creeps across my face and I remember that God put me here and he’s kept me here for a reason. He gave me this burden to carry because I was worthy to carry it. A true warrior sent by God will never be given an easy life. Those chosen are the victors. The one’s making an impact in the world, the one’s leading the way for the lost, and being strong for the weak. I am honoured that he chose me and no matter what happens he has me. My faith will carry me. I’d just like a couple days off if you get my drift.
Well thanks for reading and please know that I am ok, I just need to send this out of my head and on to virtual paper so I can move forward.
Let go let God,
N
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