Just some ramblings about my thoughts before I go to bed....
I am so glad that I've had so much support from everyone in the cystic fibrosis community... Each and every CFer I have met, whether it be online or in person, has touched my life. They are all so unique and special in every way. I am so very thankful to know the people I do and have the amazing support group that I do.... but sometimes it is SO hard being such a big part of the CF Community. It really pulls on my heart strings and I try so, so hard not to let it. But sometimes it happens.
There have been some amazing and life changing events with some of my CF friends and their families -- new lungs, new drugs, new leases on life... It's incredible. But there has also been a lot of scary and life threatening events as well. Hospitalizations, organ failure, etc. These are the moments that I try not to focus upon. I try not to get wrapped up in them. But it's hard.
One of my good friends husbands has been in the hospital all month fighting for his life. His organs are slowly failing and he desperately needs a transplant. Many of my CF friends are slowly getting worse. The progression of the disease is speeding up at a scary rate. And some of my CF friends are hanging on and doing fairly well.
But tonight I am just angry. Because cystic fibrosis is in no way fair. I always hate CF... always. Why wouldn't I? It stole my husband from me.
But tonight I hate it especially. I have been seeing a lot of my two best friends now that I'm back in Utah. I LOVE being around them and hanging out. I don't really have any one else to go to right now. But by being around the CF routine this time... well it's not bothering me, I really don't mind. It doesn't particularly make me miss Spencer or anything. But this time I am just mad. And being around it the last couple of times I didn't have many emotions tied to it. It was fine. But this time is different. I am remembering how much one goes through. How much Spencer had to go through, and more. Staying up late to do treatments even though they are exhausted. Having to get up early to get an extra treatment in. Resting frequently. Not having the energy to get up. Having to wear oxygen more frequently to stay alert, have more energy, catch their breath. Coughing constantly to clear their airways so that a deep breath (a "normal" persons shallow breath) is possible.
In a way I hate that I know so much about this disease. I hate that I am so educated sometimes. I hate that I've seen CF through it's bitter end. What it has the potential of doing. To those afflicted. To families. To friends. I hate seeing the progression in my friends. It terrifies me. I don't want to lose my friends to this disease. Ever. =/ I'm not saying that I'm going to lose them anytime soon... no, not at all. Most of my friends are far away from that. But it's hard knowing that CF is just naturally progressive. It's hard just simply "to know".
Sometimes it's weird to realize that I've actually forgotten what the day-to-day life of a CFer is since losing Spence. I think that I remember like it was yesterday and that I could live it again in a heart beat if I had to. But being around it again makes me realize that what I once knew as routine is now slipping my mind. And though I think it's a good thing, because it is no longer part of my life -- in a twisted way I am really sad that that's not the life I am living anymore. If I was still living that life, my husband would still be here. And so a big part of me wants that life back. The hectic, terrifying, exhausting, never resting life that I once had. That we once had.
I'm not feeling sad as in I just want to sit here and cry about it. But I'm feeling that truly heart broken feeling. That feeling where you just desperately want to do more. You just want to take matters into your own hands. The feelings where you so badly want it to be you and not them. Yes I am angry. But I think a good word to describe it right now would be melancholy.
I know that this feeling will pass. Tomorrow I will continue to hate cystic fibrosis, of course. That's why I am so passionate about finding a cure. But tomorrow I will not feel quite the hatred and sadness that I do tonight. Cystic fibrosis has completely changed my life. I have grown in ways that I never thought possible because of being the wife, caretaker, and friend of those living with CF. I have met people I would have NEVER met had it not been for CF. I wouldn't be in Utah, a state that I LOVE if it wasn't for CF. It has brought good into my life. Very fulfilling, gratifying, and wonderful moments into my life. Love. Life. Happiness, believe it or not. I would not be the person I am if it weren't for cystic fibrosis.
But it doesn't stop me from hating it. Loathing it, really, when I think of it taking my husbands life and when I see it affecting strangers, my friends, and my best friends. So for tonight... FUCF >.<