Friday, February 22, 2013

Left behind: I just need to vent


    As I right this blog tears fall from my face because right now my CF is getting the best of me. Sometimes I just a moment to break down and cry and let everything out, and that moment is now. And I know that all of my fellow CFers will be able to relate to this post. Even though I try to put up this front that I'm not scared, tired, frustrated, angry, lonely, or weak, I can't always be strong all the time. It's not something we like to admit but it's true. I hate CF sometimes. I hate the fact that it controls my life even though I try not to let it. I hate that because of it I'm missing out on so many things I should be doing. Constantly being sick really puts a damper on getting to act my age. Right now I should be attending college, partying, living on my own. And my biggest problem should be what I'm gonna do for my 20th birthday next month. But instead I'm thinking about things like, when my next hospital stay is gonna be, how many breathing treatments I did today, whether I ordered my medications or not, or what appointments I have this week. And most recently, whether or not I'm gonna for sure be offered a spot on the transplant list or not. Even if I am offered a spot, I worry about whether I'm actually gonna get my lungs in time. I'm thankful and blessed to have people that stand by my side. But sometimes it's just not enough. Because people that say "I'm always here if you need me." aren't always there when you need them. They have their own lives, and are lucky enough that when CF becomes to much for them to handle or something better or more fun comes along, they can get up and leave. Unfortunately though, I don't have that luxury. No one with CF does. I'm stuck, trapped in a body with lungs of a 90 year old woman, that don't allow me to be the 20 year old that I want so desperately to be. I would give anything to have the life that I'm watching all of my friends live right now. 

I just needed to vent. Thanks for reading. Prayers are very much so needed right now. 
- Amanda

9 comments:

  1. Oh my goodness, Amanda!! My heart breaks for you! Will definitely remember you in my prayers tonight. I'm glad that you can allow yourself those times to just grieve but that you also do your best to live in the moment. That is something we all need to do because we only have today.

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    1. Thank you! I just have my moments where I just get really overwhelmed and I just break down. So I thought I would vent about it through my blog!

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  2. Hi Amanda!

    Well sometimes this is what we need when dealing with this disease we have!! You need time to vent, to scream, to kick, and to even cry. This is normal so do not feel like it is not.

    We all have bad days but life is 10% of what happens to us and 90% of how we react! So you can have these crying days sometimes. Just try to find a positive in every situation in life. I know it is really hard to do this especially when we see our peers living without worries. But I will tell you this as I have lived the college life and all that stuff. Its more hyped up than it really is. Partying is overrated. Just think you are taking care of yourself while others are getting drunk etc and abusing their bodies.

    I will also tell you the people that matter most are the ones that will stick by your side through eveything whether its good or bad especially when it comes to CF. Surround yourself around positve people and people that care about you and your CF. I hope this helps you cyster.

    Keep your head up good things will be coming your way....Just believe in them!!

    Take care

    John

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    1. Thanks John! That really means a lot! Everyone says I'm not missing out on anything but to me it feels like I am. Because most everyone that says I'm not missing out, has done it. I'm just looking forward to getting my new lungs ASAP, so I can get to enjoy my life! I hope everything is going good for you :)

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  3. It really sucks, doesn't it. You deserve to vent sometimes and even scream, "It's not fair!" From what I've read from you so far, I think you are strong and will get through this bad day and others to come. You are loved by many and cared about by many of us to here who have never met you. I hope knowing that helps.

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    1. Thank you Ruth! Knowing I have so many people, whether I know them or not, that love and care about me is the reason I keep pushing forward. So yes, knowing that does help :)

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  4. some of the luxuries we have as cf'rs is how strong we are, how we dont take anything for granted, && we're together a family. I understand its hard, you know I do. I'm getting to that point where I'm looking into getting evaluated for the transplant list myself. we're always here for you && you have my # so you can txt me whenevaa you want :)

    stay strong, xx.

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  5. Hey Amanda, I just gotta say that reading this made me cry... Thinking about how many days out of the week just crying about all of these struggles and not having the opportunity to be normal like all of our friends:/ But as soon as Im with those friends or any of my peers, I put on that happy face, pretending that nothing is wrong and trying to act as normal as I possibly can. I am a senior in high school and I have missed about two and a half weeks now from being sick at home. Im going crazy... Its so hard always trying to be so happy but I still try so hard and by the looks of it you do to. We can keep each other strong and Im always here to talk to. We all need to vent, its healthy to!:) So looks like Im about to do the same thing on my blog. Thank you

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  6. Amanda, this made my cry. Cry for you. Cry for all us CF'ers. Cry for myself. Lord knows I've shed way too many tears over this disease. I think those who do break down, who do have a breaking point show us that they are human. So many non-CF'ers and CF'ers think we're machines; able to endure day-after-day being thankful that we're alive. This is not true. We bare great emotions because the suffering is great. I want to give the cliche response of "things will get better" or "stay positive" but I won't because I know how frustrating that can be. I will say this: so many are thinking of you, wishing they could absorb the pain and suffering.

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