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Being real

A8BDE574-B519-4398-9BE1-FB0D290BEB5F.jpegIt’s hard to express what it feels like to have a body that isn’t on your side. And I don’t mean that it won’t lose weight or that it’s achy or tired. (and I’m not minimizing those things but this is different) It’s that my body is literally trying to hurt itself day in and day out. It was true of mine with autoimmune disease. And it’s true of it now with my new organ. My body will never ever accept this liver as its own and frankly, sometimes it makes me mad.

Yesterday I was mad for a lot of the day. Just mad that I’m stuck with this lifelong burden of tweaking medications, being on edge, drawing blood, etc. 

And then I feel guilty. Did I do something to cause this? Did I cause the imbalance that’s happening right now? And why can’t I just be thankful that I’m here and doing okay?

And then I was mad again. I take better care of this body than so many people take care of theirs. I know I’m not perfect and I know it’s not a competition… but I’m damn nice to my body (and now I’m laughing at myself because this sounds ridiculous).

I guess what I’m trying to say is that transplant is not a cure all, fix all. Don’t get me wrong, don’t think for a second that I’m not thankful. I’m SO THANKFUL every single morning that I wake up again. But it’s not easy to live a post transplant life. Even when things are “perfect” with your labs, you have fear. Fear of the next time or that you’ll get sick again or that you aren’t doing enough. Fear that you’re wasting your life, your second chance.

You compare every struggle to a health issue. “Yeah that guy cut you off but at least you’re alive, Amanda.” It’s so annoying. The way every inconvenience is rationalized by your inner voice like you’re not allowed to be upset about anything. Like you’re supposed to be superhuman because you almost died.

The things I feel and think are so at odds at what I know sometimes. I know it’s not my fault. I know. I know that I’m allowed to be angry and scared. I know that. 

And I know I’m allowed to voice it so I’m going to. But I won’t lie. There’s fear in that, too. What will people think? Will they think I’m miserable? Ungrateful? Holier than thou? 

Maybe they will. But maybe this will help me heal and maybe I’ll find I’m not the only one who feels like a mess so often.

This is me yesterday, tears in my eyes. These are the things no one posts for fear of judgement. Because it’s not Instagram pretty or fun or light. But this is me… when one little number in my body is off and when they up that medication and you’re just TIRED. You know you’ll be fine… it’s a blip in life… you’re strong enough to handle a lot more… but you’re tired. And that’s okay.

  • Note for concerned parties: Truly I’m fine and my rouge number will come down soon, so no need to worry about my health. This is just me using one of my outlets. ❤
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Hi Amanda, meet Amanda

One of the gifts of talking to someone who doesn’t know you for an hour every couple weeks… is that you really get you know yourself. It’s the strangest thing to have a conversation that completely centers around YOU. There’s not give and take of questions. “Oh I’m great, how are you?” It’s just “I’m good. This week was pretty good because…” It feels almost selfish in a way, but it’s how it’s meant to be – in therapy, in that world.

A thing I’m learning about myself rapidly… that I knew to an extent, but it’s becoming more and more pronounced and showing me how my life is affected by it… is that I am a perfectionist. There is a great quote by Brene Brown (my girl intellectual crush) and it goes like this, “Understanding the difference between healthy striving and perfectionism is critical to laying down the shield and picking up your life. Research shows that perfectionism hampers success. In fact, it’s often the path to depression, anxiety, addiction, and life paralysis.” Well, that’s a slap in the freaking perfectionist face. I am learning a lot of my anxiety is tied up in my “need” to be perfect and hold it all together. To not need others to help me, to be the helper. To be easy person who doesn’t cause problems. So when my life was thrown in a tailspin… when I was forced to give up control… and allow people to help me… My entire self was so confused. And still is.

Confusion doesn’t go well for the perfectionist person.

Lack of control doesn’t either.

But when I show up at each appointment, when I show myself a little bit of grace…. When I allow myself to break down and admit that I don’t always have it “together”… I make progress toward a healthy striving instead of perfectionism. It’s a work in progress, and that progress is agonizingly slow some days… but it’s happening. And I will keep making steps so that it keeps happening.

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Raising awareness.

An organization called Power2Save: Transplants Save Lives asked me to share my transplant story on their website, and today, it was published! I am honored to be included among the other warrior stories and I hope that in sharing my story, I will inspire more and more organ donation. 

Thank you for reading and I hope you will share the importance of organ donation far and wide!

http://power2save.org/2017/11/27/amanda-liver-transplant/

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Epiphany

I realized something today. You know those random epiphanies? I realized that although my life hasn’t been easy, and I’ve been dealt some hard blows… I’m infinitely blessed. And not in the annoying #blessed way. But the things that have gone horribly wrong? Horribly unjust things, like my illness — being the most glaring example — have happened. I would say I’m better off than so many though because none of the hardest things in my life have been at the hands of people. The people in my life that were supposed to love me, have loved me. Yeah, they’re not perfect, but they’ve tried and tried to be the best parent, husband, friend, to me. The people who really matter… They didn’t and don’t do things to hurt me on purpose. I’ve seen so many people lately, walking — running away from terrible circumstances caused by other human beings. Completely disrespected, injured, hurt in ways I can’t begin to understand.

Some circumstances in my life have been nothing short of shitty. I mean, how is it fair for a 23 year old to get a death sentence unless she gets a new liver? It’s not. It’s almost overshadowed though because the PEOPLE in my life loved me through it. People who didn’t even HAVE to.

So whenever I get bogged down with the “why me’s”… I need to remember I’ve always been loved. I’m loved so big. Even when I don’t deserve it.

And to those who haven’t been. I don’t mean this to come off as a brag or as insensitive to you and your struggles. I say this to show my deepest admiration and righteous anger for what people have done to you. It’s not okay. And you’re worthy of being loved in the right way. You are. I might not be one of those important people who shouldn’t have let you down but I hope you know that I’m willing and able to listen and validate you. Any time. My heart literally aches when I hear about someone being wronged. I promise I hear you.

So, I’m not angry at people in my life. Sometimes I feel like I am, and of course I have those moments like we all do. But when it comes down to it, I get angry at circumstances. How does one come to peace with that? I’m not sure, but writing out my thoughts may be a step in the right direction. I just want to see beauty out of ashes. The fact that I have a breeze running through my hair and I’m here to watch these leaves change is pretty beautiful… so I’d say I’m on the right track. I’m trying.

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But God.

Transferred from old blog… 4/6/15

 

People ask how I’m feeling a lot. What a loaded question. 

Where do I start?

I feel tired. All the time. I don’t feel like me. I feel overwhelmed.

I usually say I’m feeling the same. Or pretty good, or okay. But if you want the real, unedited, unfiltered, deep, scary, long version? You better buckle up and become a therapist in the next two seconds 😉

This is what’s on my heart, as I lay in bed beside my sleeping sweetheart. I’m about to get up for some leftover pie, but this needs to be said. Probably more for me than for you.

Yes, I’m exhausted upon waking. I’m often afraid and anxious. BUT GOD. I heard that prepositional (I think. Help me out, grammar police?!) phrase in a blog once. The author talked about how POWERFUL the phrase BUT GOD is. You may be struggling. In fact, I bet you are. Not in the way I am, or your best friend is, or your child is. But in your own way. And to you, it’s big and it’s real. Maybe it’s consuming you.

Can I just say it again? BUT GOD. He is still good. He is still real. He is the rock that is higher than I – higher than you.

Maybe when you say “But God,” it comes out more whiny. “BUT GOD, why me? Why is this happening?” Trust me, I’ve been there. I am there. At least ten times a day. Well, not to sound like your mother, but life’s not fair. It’s really not. BUT GOD (is this getting annoying?) sees you. He sees little you. And little me. And He has a plan.

So. How do I feel? I feel… All the things. But to sum up how I feel tonight – I feel thankful. Thankful that God hooked me at a young age. I was saved at five. How privileged I was. I am thankful for a family who fostered my relationship with Him. They took me to church. They prayed with me. And I’m thankful for a husband who leads me closer to Him everyday. We just got done reading the Word and lifting our concerns to our Maker. And he forgives me every time I act like a spoiled child. I know I’m his beloved, just like I’m God’s.

Life is hard. Like, really hard. But God has given me so much to be thankful for.

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You can do hard.

Aug3-1024x1024When it comes to illness or tragedy (one in the same, so often), or even life choices we make… it’s common for people to say, “I couldn’t handle that.”

News. Flash. Yes, you could. I read a friend’s blog post that addressed this the other day and it’s had me thinking. As human beings, we are made to withstand hardship. It’s uncomfortable to say the least. But we have an innate will inside of us to live. So when we are faced with hardship, we find a way to handle the “alternate reality,” as she worded it.

I’m living proof. And I’m sure you are, too.

So… the next time someone is doing something you “couldn’t do,” go love on them. Send coffee or chocolate. Send encouragement. Wrap them in support, whatever that may look like. Make it a little, tiny bit easier for them.

And the next time you’re handling something that you never planned to handle, know that you can. You really can. Use your coping mechanisms and give yourself grace, but fight for whatever it is you need to fight for. You’ll handle it.

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August.

August. We meet again. Do we have a history together or what?
August is the month I’ll love every year from here on out. It’s the month I got my life back. The life I knew was taken away in May 2014 with sickness overtaking my body, my liver failing, everything changing. In August 2015, it got switched around. I got my new liver. I started living again. I didn’t get “me” back… It was a new version of me. But frankly, I like this version better.
This version knows impossible sacrifice. I know what that looks like. It looks like a friend offering up months of her time, her ORGAN, so that you can have a chance of living. 

This version knows passion. The passion for organ donation, because it just.makes.sense. Because I see people die waiting. Because I love people who are waiting for a second chance. I love people like me who are struggling to get out of bed everyday and move forward. 

Passion for love. Passion for people. Passion for purpose. 

This version of me knows (better) what is important. It knows to not waste time pursuing what’s expected, what was planned. Life is too fragile to blindly chase success. To blindly fulfill expectations others or yourself have placed. Like a heavy boulder on your back. 

Nope. I’m pursuing a life that God has put on my heart. Because I know what it’s like to almost lose that opportunity.

This time last year I was sick. Very sick. I was surviving but I could have had something go wrong at any moment. A bleed. An infection. 

I am simultaneously humbled and proud to be standing here this August. I’m alive. And I love my life. I love my future. I don’t know exactly what it holds, but I know it will be good because I know God has kept me here for a purpose beyond my comprehension. 

August is my month of transformation. My month of waking up, new, but broken down. Weak, but strong.

I just love August.