Monday, March 7, 2011

3 days...AND an update

 I have so many things I want to blog about, but I find myself unable to post anything my first week out of the hospital. I think I might have finally caught up on my sleep. My picc line stopped being such a hassle for me when trying to fall asleep, and I'm starting to find my independence when getting ready for the day. My arm has been really stiff, but it's finally starting to release a little. It's not that swollen anymore, and it's not tender anymore! YAY! The last person to change the dressing did a horrible job, after just 3 days it's starting to get crazy.
I'm home!!!! After my hospital hangover truly goes away, I will be able to update you on all the happenings of my life. My life is far less interesting out of the hospital. You'd think it was the opposite way, but it's not. I came home expecting my Jena to be gone, but didn't really understand what that meant until I saw all of her things gone. :( I MISS YOU JENA!!! I'm a sad little Phee without my JBear.
So here are the last 3 days I've missed, I'll try and be better about this. I have 10 days left!!!



 Day 18 – Something you crave a lot.


 Lindor dark chocolate w/ Raspberry deliciousness in the center. Mmmmm good!!



Day 19 – Another picture of yourself.


 This is a picture I took of myself 2 summers ago. I desperately miss the sun.



Day 20 – A picture of you last year and how you’ve changed since then.




Just for the record, my entire blog documents the changes in my life during the last year. To renew my own knowingness of them I am going to write it out now.


A year ago I had just come into contact with the scary prospect of transplant. I knew my condition was worsening, and would continue until my ultimate demise. Obviously I wanted to avoid that, so transplant was my only option. I thought about it constantly for a week, and I learned everything I could possibly learn. I had been against it for years, so it took awhile for my doctors to REALLY understand that I was serious about it. I've done a lot of changing since Morgan came into my life. Now, I would never want to leave him, not even in death. So, I had to grapple with that when I was thinking about transplant. I had to come to terms with the possibilities if I got a transplant, or if I didn't. But, death would be guaranteed if I didn't get a transplant.
I did the transplant workup in April/May, and I've been trying to get on the list ever since. Obviously I've had some complications in that arena. After a failed surgery, and a successful surgery I'm finally ready to be listed. Through all the (excuse me) shit I've been through in the last year, I can comfortably say that I'm not sure I knew who I was before I made this decision. My attitude about life has changed in some interesting and drastic ways. Where I was living for the present before, I am now living for the future. Even though I was very interested in my future, it wasn't EVERYTHING. Day to day was my life, experience to experience. But it's so much more now! My life is so incredibly full. I have love and hope surrounding me wherever I go, no matter the state I'm in. There is something weird that happens to you when you know that being sick isn't ALL there is in life. Now, I'm living with the knowledge that I won't always feel like a massive pile of sick that just got flattened by a semi. Life is much happier now, but at the same time it's not. Like anything great and fulfilling in life, you really have to work hard for transplant. It will consume you if you don't balance it all out.

But, WOW, I've changed so much since I became a wife. My life revolves around Morgan, in a very strange way that you would only understand if you were married. I'm so incredibly happy to be with him every day, and even though everyday isn't a fairytale by any means, we have so much fun together, and our life together is so full of love. I am so thankful and blessed to have him in my life as my husband and my best friend!


You know, after sitting here for awhile, I just now realized that there isn't one way my life hasn't changed in the last year. Even my style and hair is different. The ripple effects of deciding to get a transplant is so interesting to look at from where I'm standing now. I am so close to it that I can taste it!
The life and future I've been dreaming of is just over the next hurdle.


I CAN'T FREAKING BELIEVE IT!!!!




I'm going to a Jokers & Jacks show tonight. (The band my hubby plays in) It will be the first good venue I've been too. I can't wait to see all the new stuff they've been working on. Even as a wife there's very little musically speaking, that I'm privy too.


Also, I told you I would post a picture of my new haircut....






I guess this kind of was an update in the end, at least transplant wise. You might of noted the fact that I'm not listed yet. UW wants me to do an Echo to get find out the new state of my heart. I'm doing that tomorrow. I have an appointment in Seattle later this month, so I'm pretty sure that I will get listed this month. Which is interesting because it's exactly a year since we started this whole adventure. I'm thinking next year this time, let's go for having been transplanted! Yeeeeaaahhh!


I hope this blog finds you all well and happy. 

Cheers to love, happiness, and the endless possibilities that the future holds.

Phee

2 comments:

JB said...

I love how upbeat your post is! It's almost like you've been enjoying the sun here in Arizona!
I miss you and in honor of that I have officially started to read The Girl With The Dragon Tattoo. I'm only a few pages into it but so far so good!

I'm glad to hear that your picc line is healing nicely and that J&J are playing a gig tonight!

Send every one my love!

Nina said...

Hey awesome blog! Where are you being listed for transplant? Hope you are doing well!