Three months

A supportive outlet of highly emotional diva songs has helped me channel the pressure cooker of known and unknown feelings that assimilate inside while waiting for transplant. Celine Dion, Cher, Mariah Carey, Toni Braxton and .. some more Celine Dion played at maximum volume are an excellent prescription for dealing with times like this. There is something in the ultimate diva song that shifts even the most immovable curmudgeon. (Sometimes, right now, I feel like that curmudgeon. I need to be shaken up. Diva songs do this.)

(Did you know that Celine Dion is THE OG when it comes to CF awareness. Her nephew died many years ago from CF and she has raised more awareness and given more than anyone else period. I remember learning that she cared about CF as a young kid through a Touched By an Angel episode. It was a pretty sad episode, but, it made me start thinking about CF globally. It opened up my mind to the idea that my illness was not just mine. There were more people out there dealing with it.)

There are some mornings I wake up and my heart is pounding. This is because my heart is beating too fast and working so hard under pressure from my malfunctioning lungs. My lungs are only working at 24% of what they should be. The physiological stress blurs in with the stress of the mind. Anxiety and end stage cf feel similar. The mind races, the heart beats fast and I look for an outlet.  There are the days all I want is silence. I am looking for a way to meditate more effectively.

It’s been three months since I was placed on the active transplant list. Things have gotten much more difficult. I aggressively denied the need for dependence in the beginning. I dragged my own o2 tank everywhere. I was grateful but stubborn when it came to shopping for and making my own food. I refused to let anyone arrange my clothes. I am now unable to do any of those things realistically. The thought of washing my hair is exhausting. The action of washing my hair is exhausting. I have been considering cutting it for a while now to make it easier and one less energy zapper. But there are good things. I wouldn’t be able to do this without my parents and I am so lucky they are supporting me.

I know good things are coming. It is probably usual to feel like this three months on the waiting list. I know there are people who wait years. I know that I can’t wait years because I am too sick. Exercise therapy is one of the most positive, exciting parts of my week. I love being able to work out daily because it is a positive thing only I can do for my body. It makes me feel hopeful for when this transplant happens. I follow some amazing women with CF on Instagram who have chosen to share their stories. One woman is six weeks post-transplant and jogging already! This electrifies me into reality again. Look at what can happen! Good things are coming! Good things are coming.


Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s