September 29, 2010
No Joke
Just when I finally started sleeping again, I got hit by the insomnia monster. I had been in bed since 12 but no luck sleeping. So I gave in and reached for my phone. My trusty late night companion. I thought about finishing up one of the many unfinished posts I have. But I was sucked into the black hole, other wise known as Twitter. I got caught up with every ones day. Checked in with a few of my transplant buddies. And then decided to search twitter for Liver transplant to see what I could find.
Scattered among medical information and prayer requests, I found a mess of jokes about drinking and needing a liver transplant. Seriously people?
It's drinkin' time!!! I'm predicting a liver transplant in my future....any volunters?
Signin up 4 a liver transplant....so muc *beer* in d system..
I fink after last nyt I should sign up for a liver transplant...... Lmao
Now I wont sit here like I'm any better than them. I have a family full of drinkers. Well, I grew up on an island full of drinkers. And I was no stranger to the bottle myself. I'm not anti-drinking, but one word comes to mind! Moderation. Drinking no longer has a place in my life. And if it is a part of yours, I dont love you any less. I guess I'm just so aware now how much damage something we think is so cool and something some people cant stop is hurting us.
Now that being said, I feel the need to clear up that my Budd Chiari Syndrome was not caused from drinking. And who knows maybe if I did drink more my blood would have been thinner and I wouldn't have gotten a blood clot. But it is what it is and I have what I have. I just wish people would think before they say/type things. It may be funny now, but when you are sitting there and a Dr is telling you that you will need to have a liver transplant, I promise you, PROMISE, you will not be laughing then. Especially if your liver looks like this
A healthy liver in adults weighs about 3 pounds (left). A liver damaged by alcoholism shows a buildup of fatty tissue (middle), and a liver with cirrhosis is enlarged and swollen (right).
© A. Glauberman/Science Source, Photo Researchers, Inc.
Scattered among medical information and prayer requests, I found a mess of jokes about drinking and needing a liver transplant. Seriously people?
It's drinkin' time!!! I'm predicting a liver transplant in my future....any volunters?
Signin up 4 a liver transplant....so muc *beer* in d system..
I fink after last nyt I should sign up for a liver transplant...... Lmao
Now I wont sit here like I'm any better than them. I have a family full of drinkers. Well, I grew up on an island full of drinkers. And I was no stranger to the bottle myself. I'm not anti-drinking, but one word comes to mind! Moderation. Drinking no longer has a place in my life. And if it is a part of yours, I dont love you any less. I guess I'm just so aware now how much damage something we think is so cool and something some people cant stop is hurting us.
Now that being said, I feel the need to clear up that my Budd Chiari Syndrome was not caused from drinking. And who knows maybe if I did drink more my blood would have been thinner and I wouldn't have gotten a blood clot. But it is what it is and I have what I have. I just wish people would think before they say/type things. It may be funny now, but when you are sitting there and a Dr is telling you that you will need to have a liver transplant, I promise you, PROMISE, you will not be laughing then. Especially if your liver looks like this
A healthy liver in adults weighs about 3 pounds (left). A liver damaged by alcoholism shows a buildup of fatty tissue (middle), and a liver with cirrhosis is enlarged and swollen (right). © A. Glauberman/Science Source, Photo Researchers, Inc.
September 13, 2010
Today Dr. visit.
Today was my check up with my PCP. Pointless if you ask me. I mean nothing is more exciting than spending 2 hours waiting for a 5 minute exam. OK, 10, but still! Went over my ER visit. He reminded me that they can't do my gall bladder scan until I'm done breastfeeding. Sorry but when my GI says its mostlikely NOT my gallbladder. And then you're telling me that after this scan I shouldn't come close to my kids for a week....yeah! I pass. I've had Xrays, ultrasound and MRI's and nothing came up on them. So I'm not sure what his deal is?!
Then the topic of fatigue came up. To which he said, he believes its from my liver...and the 10 lbs I've gained. And being a mom. His suggestion was a low fat diet. Add that to my low animal protein, low sodium, low vitamin K diet. Water here I come. Damn. Can we say boring? I need a personal chef. I will settle for my dietitian.
Now to get home, feed the boys, bathe them and put their sweet little butts to bed. Happy Monday :)
Then the topic of fatigue came up. To which he said, he believes its from my liver...and the 10 lbs I've gained. And being a mom. His suggestion was a low fat diet. Add that to my low animal protein, low sodium, low vitamin K diet. Water here I come. Damn. Can we say boring? I need a personal chef. I will settle for my dietitian.
Now to get home, feed the boys, bathe them and put their sweet little butts to bed. Happy Monday :)
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September 12, 2010
More positive & less negative..please
I haven't been writing much because honestly I haven't had much to say that doesn't make me sound like a depressed whining baby. Well I should say I haven't posted, because I have 2 post written out that just sound lame now that I go back and read them.
Ive just been so down lately and I don't know why. I mean besides the whole waiting for a new liver/fatigue/pain thing. Ive been in touch with a case nurse from the insurance company who called to tell me that she thinks I need more than just a nurse calling me every now and then. Not sure what that means, but she wanted to find a more suitable program for me. Maybe they have a transplant program? I don't know. She also asked me how I am coping, which obviously I'm not doing to good a job at!
There has just been so much going on every time I stop, I start thinking about the challenges I'm up against. I now have 4 transplant buddies that have gotten their gifts already and as happy as I am for them, I truly am happy for you guys, I'm left wondering how much longer I will wait. I'm reminded of all the things I am waiting for. Not just my liver, but other things in life that I wont bother getting in to right now. I'm trying to dig down deep and be grateful for all that I have. I have been spending as much time possible with my guys. But I think we are all feeling a little grumpy and just keep feeding off each others negativity. I have to finds a way to stop this before we all end up crazy!
Now that I think about it, I think I will allow myself one day to vent to you all. Hmmm now what day? I guess Ill figure that one out. I know I need to be more positive. I have to keep moving forward. But sometimes it feels like every time I move forward a wave of crap comes and knocks me on my ass. And I'm back to the being bummed and grumpy. Sucks! Need to find me some positive vibes. Got any?
Ive just been so down lately and I don't know why. I mean besides the whole waiting for a new liver/fatigue/pain thing. Ive been in touch with a case nurse from the insurance company who called to tell me that she thinks I need more than just a nurse calling me every now and then. Not sure what that means, but she wanted to find a more suitable program for me. Maybe they have a transplant program? I don't know. She also asked me how I am coping, which obviously I'm not doing to good a job at!
There has just been so much going on every time I stop, I start thinking about the challenges I'm up against. I now have 4 transplant buddies that have gotten their gifts already and as happy as I am for them, I truly am happy for you guys, I'm left wondering how much longer I will wait. I'm reminded of all the things I am waiting for. Not just my liver, but other things in life that I wont bother getting in to right now. I'm trying to dig down deep and be grateful for all that I have. I have been spending as much time possible with my guys. But I think we are all feeling a little grumpy and just keep feeding off each others negativity. I have to finds a way to stop this before we all end up crazy!
Now that I think about it, I think I will allow myself one day to vent to you all. Hmmm now what day? I guess Ill figure that one out. I know I need to be more positive. I have to keep moving forward. But sometimes it feels like every time I move forward a wave of crap comes and knocks me on my ass. And I'm back to the being bummed and grumpy. Sucks! Need to find me some positive vibes. Got any?
September 7, 2010
Wonderful weekend
I love 3 day weekends. Ok I love any weekend, but long ones are the best. We were thinking about going to the beach, but changed our minds. Should have just gone. But we did get a few things done. Yesterday we took a trip out to the park. We bought a jogging stroller and had to break it in. It must be good because 5 minutes into the hike and the baby was sound asleep. We did see one snake. No not a rattle snake, but we sure were on the look out after that! All the beware of snake signs didn't help either.
And now we are back to the grind. School, work, appointments....what else is there. I have a ton of things to do this week, and I'm already a day down. Next weekend is a big one. Movie in the park on Saturday and I'm praying we get to the circus on Sunday! We are trying to get the boys out more, spend more time as a family. Somewhere along the ride we got sidetracked, but we are back in business now baby! Now all we need is a date night...
I hope everyone had a safe and labor-free labor day! Much love!
And now we are back to the grind. School, work, appointments....what else is there. I have a ton of things to do this week, and I'm already a day down. Next weekend is a big one. Movie in the park on Saturday and I'm praying we get to the circus on Sunday! We are trying to get the boys out more, spend more time as a family. Somewhere along the ride we got sidetracked, but we are back in business now baby! Now all we need is a date night...
I hope everyone had a safe and labor-free labor day! Much love!
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September 1, 2010
100 days
For the last 100 days I have been waiting for a very important phone call. I have kept my phone charged, or near a charger. I've answered almost every call. My stomach jumps into my throat every time the phone rings. I wake up every morning wondering if today is the day. And before bed I wonder if tonight is the night. But still no call. For 100 days I have been listed on the UNOS liver transplant list.
Most days I am able to convince myself that its a good thing to have come this far. I should be blessed to still be as healthy and active as I am. Every day I remind myself to be thankful just to be here with my family for one more day. After all, I am not the only one waiting. I am not the sickest, the oldest or the youngest. There are people who wait years before getting their call. And there are some die waiting. I don't want to be either of thoes people.
But how much control do I really have over my time? Liver disease doesn't care about what I want or need. One day I am fine and the next day I feel like I've already have one foot in the ground. Most days I have to force myself out of bed, paint a smile on my face and put on my "I'm fine" show. And I spend the better half of the day trying not to lose my cool. What I'd really like to do is spend a few days in bed. Or better yet at spa. Yes that's it.
So anyways, before I go to sleep, I'm wishing myself a happy 100th day. Praying the call comes not to soon or to late but rather at just the right time. I look forward to just being me again. I am ready!
Most days I am able to convince myself that its a good thing to have come this far. I should be blessed to still be as healthy and active as I am. Every day I remind myself to be thankful just to be here with my family for one more day. After all, I am not the only one waiting. I am not the sickest, the oldest or the youngest. There are people who wait years before getting their call. And there are some die waiting. I don't want to be either of thoes people.
But how much control do I really have over my time? Liver disease doesn't care about what I want or need. One day I am fine and the next day I feel like I've already have one foot in the ground. Most days I have to force myself out of bed, paint a smile on my face and put on my "I'm fine" show. And I spend the better half of the day trying not to lose my cool. What I'd really like to do is spend a few days in bed. Or better yet at spa. Yes that's it.
So anyways, before I go to sleep, I'm wishing myself a happy 100th day. Praying the call comes not to soon or to late but rather at just the right time. I look forward to just being me again. I am ready!
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