February 22, 2011

A confession gone wrong

Confession time. I cant count. Nor do I know the difference between March and May. Both months have very significant days in them. For the last month I have been anxiously counting to my one year mark on the transplant list next month. Yeah, about that, its not until May. And 3 months away. So good news is, I have only been listed for 9 months. Bad news is...Ive only been listed for 9 months. UGH! This my friends is what happens when you don't take your meds like you should.

I really have been slacking on my Kristalose. I am supposed to take it every morning. Every Day!! No if, ands or buts. BUT, some days I just cant. And I guess I'm just going to have to do it later in the day if not in the morning. Because I can feel the clouds rolling in. And by clouds, I mean the damn storm that is encephalopathy. My mind gets foggy. You know that feeling when you have been drinking to much and you are telling yourself you need to focus and stop acting a fool. That's what it feels like. I know what I need to do, but its just so hard to focus. And some days I just cant take it. Last week the boys were both sick. So I most definitely could not take it while they were home, because they needed my full attention and I could not be spending my whole day in the bathroom. I had planned on taking it in the afternoon, but trying to cook and having to run up the stairs to go, leaving the boys downstairs, not an option either. So I figured Id take it at night after everyone was sleeping. But then I spend the only few hours I had to sleep in the bathroom.

Who would have though mixing a packet of powder with some water, and chasing it with another bottle of water could be so hard. It is much easier to swallow than that dreaded Lactulose.  And for those of you who have never had to take it are probably calling me all sorts of names. And those that have taken it, may or may not understand. These meds are draining. No pun intended. I know I have to take them, and I usually am very good at taking them, but then weeks like the last happen and days like today happen. My mind is wandering. Its nothing to serious for now, but if I were to eat a bunch of red meat, Id probably have another episode like THIS. The good thing is, I know my body. I know the signs. And if I have to take them, I will. Just some days, I just cant.

So what exactly are these meds and why do I need them? Keep in mind, I am no Dr, but this is how it was explained to me. We all know that the liver is like a big filter. My liver is damaged. Therefore, it isn't filtering the toxins out of my blood. The toxins are then carried to my brain causing the H.E. This causes me to be confused and forgetful. I have horrible bouts of insomnia. I can get to the point where I slur and stutter and I just cant get the words out of my mouth. My Anxiety goes though the roof. My body gets so tired. And the treatment for all this...Lactulose/Kristalose. The main purpose of this is to prevent the liver from absorbing all the bad stuff. And getting it out of my body. The only way out...well yeah. So pretty much its a super laxative. Every have food poisoning. Its like that, except on purpose and every day. So when you add dehydration to the already horrible list of the symptoms of the Encephalopathy, you can see why, I say its physically and mentally draining. Ive recently switched from Lactulose to Kristalose. Mostly because the side effects were so horrible and painful. It seems to be working. It much easier on me and my insides than the Lactulose.

Have any of you taken this? Or knows anyone who has? I wouldn't wish it on anyone.

Until Next time...Bottoms up.

IMG_3830

I do NOT miss this morning shot of nastiness :)

February 17, 2011

11 months and counting

Its hard to think that next month will mark my 1 year mark on the Liver Transplant list. I wish I could say the time flew by.  It didn't.  Maybe its because Ive know for more than 2 years that I was going need a transplant but haven't been listed the whole time.  I don't know.  All I know is that its been a long wait.  And its only going to get longer.

When a Dr says to you.  "You look great now, but I can promise you things are going to get really bad!," how are you supposed to deal with that?  When your children just want you to play with them but you are just flat out to tired, how am I supposed to feel then. When I'm lying in bed at night praying that when I wake up in the morning, this is all just a bad dream, how am I supposed to sleep at night.  When I carry the guilt that somewhere someone is going to die and their death will help me stay alive.  How am I supposed to live with that.

You just do.  Because you have to.  There is no backing out of being sick.  You have to stay strong for your children and family.  You sleep because your body and mind are just to tired to stay awake.  And you remind yourself that you you are being given the most precious gift, the gift of life.  I keep reminding myself to be thankful for all that I have today.  And all that I will have to look forward to because of this person.  There is just no other way to get though this with out fighting every urge to give up. I find things to laugh about when all I want to do is cry.  I play a game of soccer even though each kick leaves me weak in the knees.  I sing silly songs when all I want is a little peace and quiet.  Life will go on, with or with out me.  But I want to be here for every minuet of it. 

So here's to my 11th month of waiting.  Yes its been a really hard year, buts its also 11 months I have been stable and able to hold my own.  A few bumps in the road, but I'm here.  I'm thankful for each and every day I get to spend at home with my family and for every morning I wake up in my own bed.  Unless something big comes up, I'm guessing I will be counting the months for a while.  Here's to another month of living life!

February 14, 2011

Happy Love Day

Happy Love Day! I know its kinda late, but I still have 5 mins or so...according to my clock;)

This had to have been the most stressed out Valentine day I've ever had. Between emails and calls to the realtor. God! I am praying things work out! I think its time for some good things to start happening don't you?!

Usually on Valentines Day I go heart crazy. Heart pancakes, sandwiches and a nice romantic dinner and desert. Maybe next year. We did have chipotle honey salmon which David loved. I can't take credit for it though, it was all Sams Club. I did make the rice though:)

I didn't really have time to be sad that this year was different from the past years. This year I'm just thankful for another day with my family. I know in my heart that everything going to work out no matter how hard or long the road is. I'm blessed to have two sweet boys to kiss good night. And a husband to cuddle up with. I better get to that!

Happy Valentines Day! I hope you were all showered in love. Did anyone get anything good?
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February 5, 2011

Dear David

People are always telling me we make being married look easy. That they knew we would make it. That they want to have what we have. We have been through a lot to get to where we are today. Like any relationship, we have our good and bad days. It's hard work being married. Especially to me:) There have been losses and pain we will never completely overcome. But there is also so much happiness and love. There are so many things I love about you.

I love the way your kisses still give me butterflies.
I love the way your hugs make everything better.
I love the way your voice erases all my fears.

I love you dimples.
I love your eyes.
I love your lips.

I love that you let me listen to what I want to listen to in the car.
I love how offer to take my food back when they forget the cheese.
I love how when you are sleeping and I tell you I love you, you always say I love you back!
I love how you tease me about the things I want but still find a way to get them for me.

Yes, its been hard. Especially the last 2 years. There is one thing that is easy. Loving you! Happy Anniversary Baby. I will love you forever!
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February 4, 2011

She's back

I didn't know her very well growing up. She was taboo, no one talked about her. And thoes that ran into her, left and never came back. I knew she was a theif. I remember when she took my auntie and uncle. I was still pretty young, but I remember hurting. I was sad that my cousins hurt so badly. As the years passed, I could still see the pain they felt. But she went away for a while. I was glad she was gone! I prayed she stay away.

A few years later, there was a new boy in class. I fell head over heels the second I saw him. I knew we were going to be together. I remember the day he didn't come to school. On a tiny island, you can't hide. But he was gone! I later learned that someone he loved was sick. He had left to help. She was back! And just like before, she stole from him. His only brother...gone!

And now 11 years later she's back. With a vengeance. She's trying to take someone I love away from me. She's trying to hurt an old friend from high school. And she's trying to hurt the son of someone I love dearly. I prayed she be gone for good. Never hurting anyone I love.

Over the years I've hear stories of her. Robbing children of their parents. Taking babies before they even have a chance to live. Breaking peoples hearts and causing a pain so unbearable.

She will not win. We can not let her take anymore people away from us. She will not take from me what she has taken from so many others. I will stand and fight. Do what ever I can do to beat her down. She's nothing but a thief. She's a bitch. Her name is cancer.

Today was world cancer day. Do you stand up to cancer? How? Are you an organ or marrow donor? Has she taken anyone from you? We need to find better treatments, we need to find a cure!
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February 2, 2011

Wah Wah Weigh in.

Ok so todays check in day. And if this was a graded test, is get a big fat F! Sometimes I wonder what in world I was thinking starting this challenge. Losing weight is next to impossible for me. I fluctuate up and down 5 lbs. But can't seem to go any lower.

I have stuck to my goal of cooking at home, very well. Except last weekend. I have noticed that I'm wanting to eat when I'm stressed. And in my world, that's like every other hour of the day. I haven't stuck to my exercise goals though. I've felt the urge to run. The stress is just built up inside of me, but my treadmill isnt "available" to use, and I can't find the motivation to go out. Ofcourse today its just downright ridiculously cold out. Excuses excuses! I know.

I wanted to give up on the challenge. Last week was so insanely crazy that I don't even remember if I checked in or not. But I don't want to give up either. So here I am. All 158.6 lbs of me. I need to do my measurements, but I know that I'm retaining water, so is rather not dig my hole any deeper tonight. I should probably just do this on my own, since there is so many health issues working against me. Like I said, I probably shouldn't have even joined. Ugh, I'm so indecisive toight! Must be my meds!

I'm trying to get my menu plan done early. This time I will be sure to add in breakfast and lunch too. No more random snacking! Anyone care to share a favorite recipe?
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