Hope Whispers

S is for Spring and Scope.

2012-02-13T17:04:00.001-06:00

**Warning! Following this post is a graphic photo**

Its almost spring, and you know what that means right? Flowers, bunnies and the inside of my esophagus. What? That isn't what spring is to you? Damn. Guess it must just be me. Every year about April I have an endoscopy done. Its so routine now that I actually look forward to it. I don't mind the sleepy juice and for the most part always wake up feeling rather refreshed.

Why do we do this every year? For something called varices. As it was explained to me, when blood flow to my liver is slowed, that the blood can get back up and sometimes it gets back up in small blood vessels in the esophagus. Causing varices. If one of these were to rupture, I can expect to vomit blood or have blood in my stool. Sounds really pleasant, I know! So in order to be one step ahead of the game, I am monitored to make sure I don't have any. They also measure the pressure in my portal vein, because the risk of a bleed increases with added pressure. I am so thankful to have both neither varices or portal hypertension!

The coolest part about it all, is that they give me pictures. And so if you have ever wondered what the inside of my esophagus looked like, today is your lucky day. I find it rather fascinating, but some might want to hurl! Be warned! And to some it may look bad, but last night I saw a photo of an esophagus with varices. Big difference than this!
.
.
.
.
.
.
.
.

8 Years

2012-02-05T14:10:00.000-06:00

Its crazy to thing that it has ONLY been 8 years that we have been married. Maybe because we have been together for almost 13. Lord knows it hasn't been the easy, but I know it has all been worth it.

David and I at the Donate Life Walk 2011

Blessed

2012-02-03T21:55:00.000-06:00

I've been a little off for the past few days. The response to my last post was overwhelming. I always knew that there were other people who truly understood where I was and how it felt. But the emails and the messages and replies. The RT's and the shares, I'm so very blessed. When I say I could not have come this far with out all of you I mean it from the bottom of my heart. With everything I am, I thank you all!

Today was a strange day for me. Tired more that usual. With an unsettled feeling. I don't know how to explain it. Almost like a calmness that just wasn't sitting right with me. My sister described it as being the last person in the world, I described it feeling like was going to be my day ever or like something big was about to happen. That feeling you get right before you get slammed with a hurricane and you're thinking OK this is it! Brace yourselves. Why do I feel like that?

Maybe reality is really settling in this time? Maybe the fact that I am actively fundraising and about to be put out there for the whole world to see scares the crap out of me. There is no more hiding. This is me. This is my life. There is no more wishing it was just a dream or pretending like everything is fine. I know in the end it will be but we are not there yet. There is a long road ahead of me. The good thing is that to some point, I know what to expect. I'm not alone and thanks to all of you who read and share my story, I have HOPE!

Wordless Wednesday: Must be nice!

2012-02-01T10:19:00.001-06:00

What does sick look like?

2012-01-31T08:58:00.000-06:00

Ask anyone who is living with a hidden illness what bothers them the most about being sick and I will bet you not looking sick will be one of their answers. For the most part I can look past this. I get it all the time. From my Drs, my friends and even my own mother. I understand it but that doesn't make hearing it any less frustrating.

Looking in the mirror, I see what you see. A smile. A little make up. I hear what you hear. My laughing and joking. But I don't feel what you see and hear. On the inside, I have sharp pains that make me want to fall to the floor. Instead I crack a joke and a smile. When I want to cry I force myself to laugh instead. David and I joke about how back in the day I could get up and go after only a hour of sleep and now even 8 isn't enough. I nap more than my kids do. Even though you cant see it, this illness has taken its toll on me. Body and mind.

Who wants to look sick. Every morning I wake up, afraid to look in that mirror. Afraid of the day I see a stranger staring back at me, again. I remember what if felt like to look as bad as I felt. When I was diagnosed, I was pregnant and thought that it was just the pregnancy. I joked that the baby was sucking the life out of me. I had been feeling sick for a while. But I did what most moms do and pushed though. Moms aren't allowed to get sick right? Wrong. Once I got pregnant, things got worse.

Sick does't always mean looking sick! Thankfully with some make up, most days I look presentable. I don't want to look sick so I do my best not to. But that seems to be backfiring on me. What does sick even look like? How about this?

Do I need sunken saggy eyes?

Do I need to be in the hospital?

Do I need to lose 40lbs? (don't really answer that! lol)

Or maybe lose more hair?

Your cant judge someones health by how they look or sound. You wouldn't think that I felt better in the first photo than I did in the last. But I did. People used to sigh and gasp when they saw me in the store. I could never figure out why. Now that I look back on it. I looked like the pregnant corpse bride! Maybe I did look sicker then. Maybe I was? But I never got "better" I body is still slowly shutting down on me. I still need a new liver to live. I still get butt hurt when people tell me I don't look sick. After all, I'm only human.

Ride Time

2012-01-29T23:34:00.000-06:00

One of my goals for the month was to walk, run or bike at least 30 miles. And with a whole week off and feeling like crap I am now left with 2 days to get in 9 miles. Which I'm pretty sure I can do. Of course I woke up this morning and Alex has a cold. I was hoping to knock out 4 of those miles on a walk around the neighborhood. Might just have to suck it up and jump on my treadmill.

I could go for a ride and that would make things quicker and much more entertaining, but good lord my cheeks are killing me. All bikes should come with extra padded seats. I found one I like at the store but wasn't able to get it just yet. The dread-mill suddenly seems more fun.

The ride with David was just what I needed. I got him all to myself twice this week. At the Spurs game and again now on our ride. We might just have to make this our thing. Its nice riding with him. And he lets me win! I beat him on 4 out of 5 of our laps around the lake. I have to admit, my legs were burning, but having him with me really made me push harder. It was the perfect Sunday morning!

Date night

2012-01-26T12:42:00.001-06:00

Oh how I needed a night like last night. David was given tickets to the Spurs/Hawks game and he took me along. We have been before but these seats were SO much better. I have to admit basketball is my least favorite sport to watch on TV. But I love going to the games. I love the clapping and the cheering and actually seeing the players. They are freaking tall! Or maybe I'm just short. Whatever, its fun. And if only I had gotten a photo of the look David game me when I got all giddy because Manu was there and I thought he wasn't. Hurt hand and all, you know. And Timmy, I love him! What I'm trying to say here is that I had a great time.

We are hoping to take the boys back for game too. Who knows when, but things just aren't the same when we don't get to take them. And if we had 4 seats, we wouldn't have to worry about the guy next to me rub his hairy leg on me or the guy in front of us put his arm back and touch our drinks! Gross. It was really cool however to see people who have season tickets talking to the others who have tickets. Its like extended family. People take their teams very serious. Ladies with dyed hair. Dress from head to toe in Silver and Black. I love it.

I didn't get a photo of the two of us to share. We do have one that one of the photographers took, but just can't dish out the $52 for a digital copy. Or $18 for a print. I really wish they would let us take our big cameras in. I'm not looking to make money of my photos, just want to have better than my point and shoot. That's all.

I wonder if any of the players would be willing to wear a Donate Life bracelet for me during a game? That could be a fun challenge. Something to thing about. Now that I have had some quality time with David doing something other than grocery shopping. I feel refreshed and better. Especially after 2 days of Drs and needles. It was a great night for sure. I wish we could do it more often, but Ill take what I can get :)

Happy Thursday!

Wordless Wednesday: How I spent the last 2 days.

2012-01-25T08:31:00.000-06:00

Whats up with me?

2012-01-23T16:32:00.000-06:00

I was coming home from the lab this morning after having my blood work done and had the perfect idea for todays "Medical" post. Got home, started chores and now I haven no idea what so ever what it was. So I will just tell you all about some things going on around here.

Today I had blood work. My Dr called me a few hours ago to let me know that my INR was a 2.6. So no change in doses and I don't have to go back for a whole month! Heck yeah! I hate when my blood goes crazy and I'm back on weekly draws. My veins don't even have time to heal! They are getting ready for a vacation!

Tomorrow I have blood work for the transplant team. Plus an MRI. So that means, one arm is going to get stuck twice. And Ill probably bruise but not biggie. I get scans done before every liver clinic appointment. And sometimes from multiple doctors. So I'm looking at over 15 scans in the last 3 years. Don't even get me counting ultrasounds because I had over 30 just while I was pregnant. At one point I was keeping track but lost count!

I don't have clinic until next month, but by doing my scans and labs early, we can go over the results when I get there. God I hope MY doctor is there. I have a few questions that I know he will take the time to answer unlike the other Drs who seem to just rush though the appointment. I hate that.

I'm still working on my goals for the month. Gotta step in up (literally) seeing as its the 23 and Ive only done 14 out of 30 miles. And I'm working on the new food part. My book will be here tomorrow. I love Janet Evanovich. I know I will have no problem reading the whole book in a day or 2! So if I go missing, there will be a 80% chance I will be hiding somewhere with my face buried in a book!

What are some of your goals this month/year? Have you stuck to them so far? Wishing you all a wonderful week!

Wordless Wednesday: His Hope

2012-01-18T10:29:00.000-06:00

{Sweet} is finding his doodles in my appointment book. Even sweeter is finding hope in it :)

Love

2012-01-12T22:05:00.001-06:00

alexBW, originally uploaded by kmunoz28.

I can still see him this little. I think in my eyes he will always be this tiny little baby. With an old man hair do and such a serious face!

A letter to the Birthday Boy

2012-01-12T21:21:00.002-06:00

Dear Alexander,

My sweet baby boy. So serious yet silly. Wild yet caring. You are everything good in this world. My world. Even at the young age of 3 you have figured out how to make your self known. You can frustrate me to tears then turn around and make me laugh so hard that I cry again. The words aren't all there, but you make sure we hear you! You are so smart and amaze me every single day. There is always something new with you. So unpredictable. I'm supposed to be the one that comforts you but most days its the other way around. Your smiles make me smile. Your laugh is infectious and your kindness melts my heart.

The very first time I saw you I knew you were destined to do great things. I gave you a strong name to fit what I knew would be a strong personality. We chose well. My Alexander the great! The day you were born is a day I will never forget. Hearing you cry and having the nurses tell me you were OK was such a relief. I would have never forgiven myself if my body hurt you! But you are perfect. And I am better because of you.

I hope that you know that I love you. I would have given my life for you and I still would. Daddy and I love you so much. And Anthony does to. I know sometimes you wouldn't think he does, but he loves being your big brother and is very proud of you! As are we. You are going to do great things when you grow up. You have amazed me in the last 3 years I can wait to see what you will do with the rest of your life.

Just now, you laid your head on my lap and told me you love me. Snuggled up real close. You are off in Mario Land but every few minuets you look up at me and smile. As if you think I am going somewhere. I'm not baby. I will be here for you any time you need me. Always by your side and forever in your heart. Remember that! I love you to the moon.

Love Mom

Let there be blood

2012-01-09T16:42:00.001-06:00

I was thinking this year I would start something a little different. Most of my posts here are about how all of medical problems affect my life, but never so much about the actual problem. And so I figured to help you guys as well as myself understand the hows and whys, I would designate a day of the week to talk about it! Sounds like so much fun I know! So it will be a Medic Monday! And if anyone has any questions, please ask because if I cant answer them, I know a few doctors that can.

I figured today I would start by going way back. Back before I even knew I was sick. Way back 29 years ago when I was born, because that is when it all started. See I didn't just magically get a blood clot in my liver. It wasn't from drinking or doing drugs. My problem started as soon as the blood started pumping though my tiny little body. Thanks to the Prothrombin Gene Mutation G20210A. Its a mouthful, but that is what started it all.

I have heard of someone who bled easily(hemophilia) but never of someone who clots easily (thrombophilia). This gene mutation causes my blood to create more Prothrombin protein, making it more likely for me to get a blood clot. Its a hereditary gene passed down to me from my father. Something he wasn't aware he had till he was tested for it. Its a quick blood test that has to be asked for by a doctor. Its not something that is checked for in any regular blood work.

The normal range for someone who isn't on medication is 1 an can differ a few points up or down. For me personally, I am being kept at a 2-3. The higher the number the thinner the blood and an increased chance of a bleed. A lower number will mean thicker blood and an increased chance of a clot. So you can see why my meds are always being adjusted.

Last week I had labs and my INR was 3.6. I had to recheck again today and now I'm at 3.0. I take 8 mg of coumadin on Tuesdays, Thursdays and Saturdays. And 7.5 on the other days. I used to take 8mg on Sundays too but since my INR didn't drop quite enough, we adjusted and I have to go back again in a week. The ONLY reason I didn't mind taking the Lovenox injections was because there was no adjustments. But the bruises and shots twice a day were dreadful.

Wishing you all a great week. And yay for a 3 day weekend coming up!!

One Fear

2012-01-06T14:38:00.000-06:00

If you have been following, you have read that I am going to be starting a fundraising effort to help offset my transplant expenses. Asking for help has been one of the hardest things I have ever had to do. All my life I have been to stubborn to ask. Most of my life growing up was kept secret. Not many people knew what was really going on and most that did, only knew the half of it. When I struggled in school, I didn't dare as for help. To afraid someone would ask me a question and I, being me, would tell the truth. Even more so that when I did ask either I wouldn't be take seriously or be let down, again. That's how I was. If you asked, I would tell. But only if you asked. Now that I have grown up and see how damaging that was to me, I managed to let go, forgive the past and now, I cant keep my mouth shut most of the time. But I still am so afraid to ask for help.

Mom said to me the other day when we were in the car, that it seemed like I didn't need any help at home. That it seemed like there was nothing wrong with me. That is what scares me most. People can be so judgmental. Moms right though. I don't look like someone who needs a liver transplant. I am not jaundice and I am by no means fragile looking. I still manage to get up everyday and make sure things get done around the house. I play with my kids the best I can and I even venture out of the house on the weekends with the family. Doesn't sound very sick to me.

But on the inside, I feel like I am carrying around a pillow stuffed inside me. The pain is the same but now I'm just plain uncomfortable. I sleep a few solid hours every night. Tossing and turning the rest. I need reminders to take my medication and back up reminders, because I usually forget what I am doing while I am on my way to the medicine cabinet. My medication makes me sick to my stomach and most days I have a hard time staying hydrated. I'm online a a lot. Trying to keep the only social connection I have alive. But sometimes it takes all the focus I have to just write out my thoughts or reply to calls and emails. I nap for hours during the day, not because I am lazy, but because its the only time I can sleep. However, having 2 young boys makes that kinda hard. Things just have to get done and I seem to have the need to do it all. Stubborn me!

All of a sudden I worry what people will think. Here I am asking for help, but to them, I look like I am the last person who needs it. When I asked, people I never imagined reached out. I am blown away and scared out of my mind now. I was so ready to be let down. Figured, I would ask once and drop it. I cant show you my illness, I can tell you all about it, and that's what I try to do here. I should have known that the people that offered to help would. They have all been nothing but pillars of hope for me all this time. I am looking forward to getting to know them all better and someday thanking them for everything they have done for me.

I hope this makes sense. I'm a little foggy today. My energy is at an all time low, but I'm trying so hard to stay ahead of it. Had planned to have mom drive us to the duck pond after school, but I think I will be needing a nap so maybe when I get up, a walk around the block will be enough for them. Gotta save some energy for the weekend. Have a good one too!!

A kidney or a liver?!

2012-01-05T23:51:00.000-06:00

Last night I was getting dinner ready and trying out a new Chili recipe. I had written in down quickly and set it aside. It wasn't long before Anthony came in to see what I was doing.

Anthony: Mom, what is a kidney?
Me: Its an organ. You have 2 of them!

Anthony: Why do you need it
Me: Because it helps filter bad guys out of our blood

Anthony: I thought you needed a liver?
Me: I do baby!

Anthony: This paper right here says you need kidneys Mom!!
Me:(turning around to see what he was talking about) Anthony! That is the recipe for dinner silly!

Anthony: THERE ARE KIDNEYS IN OUR DINNER?!!!!

God I love this kid!!

Its an old photo, but this was the exact look on his face :)

Update for today

2012-01-05T22:34:00.001-06:00

Well both boys are finally sleeping, meds are down and have stayed down, and I'm about ready to crash out myself. As soon as the eggs are done boiling for tomorrows lunch. What an exciting night eh?

I had my appointment with my Hematologist today. It was my first visit in his new office. I LOVE this Dr. He is amazing. And even more amazing is he is hoping to have a coumadin clinic open soon. For those who are reading with a funny face, the blood thinner I am on is called Coumadin. Well technically I am on the generic, Warfarin, but same thing. Anyways this has to be monitored very closely, so that means monthly blood draws, which when my numbers are bouncing around can lead to weekly blood draws and you get the picture. My poor veins are tired. But with a Coumadin Clinic, I could walk in, get a quick and almost painless finger stick and even better have my results right there! So much better than waiting on the labs. So thats good news! Bad news would be that my INR is 3.6 and thats a little high. We are going to recheck in a week and adjust my meds from there. I want to be between 2 and 3. We will see what a week does.

My blood pressure was 98/62. Low but nothing that concerned him. So I'm going to just go with it for now. The nurse said I must be really relaxed! I laughed and told her that I felt half dead. I was so tired, I fell asleep in the exam room. Good think the Dr was running a little late, because I got a quick 10 min power nap. Didn't help much. I still came home and was in bed till almost 7 I think.

This fatigue is killing me. I'm trying so hard to push though it but its so hard these days. I wonder if something else is off somewhere. I will find out in a month when I go back for more blood work at the Liver Clinic. And I have my MRI that same day. I think I'm going on my 14th MRI in the last 4 years. Its to the point where I fall asleep in there! And I actually love getting my IV flushed. Its refreshing.

I'm so glad its almost the weekend. Looking forward to some park time with the family if the weather agrees. And hopefully my body agrees too. Here's to hope! Have a wonderful weekend!

3 Days

2012-01-03T13:37:00.001-06:00

It took 3 days into the new year to remind me that I am sick. Words can't describe how I feel right now. Disappointed mostly. I knew it was coming yesterday when I started getting tired mid afternoon. I have been doing so well in not falling asleep in the middle of the day. I fell asleep at the computer. THE COMPUTER YALL! I never do that!

Last night Melisa reminded me that we had Kohls cash that needed to be spent before midnight and so at 7pm we dropped everything and went to do some shopping. After only a few minutes of being in the store, I thought I was going to be sick. So I went to the bathroom. As I sat there I realized what was going on. I had tunnel vision and it sounded like I was underwater. I had to focus and remember where I was and why. It was like I just woke up...in a bathroom! Why? Why do I always run to the bathroom when this happens? I start to feel disoriented, drunk like and I always find myself in the bathroom. Every time. Hello H.E. Or as my Drs would call it, Hepatic Encephalopathy.

I fell asleep before Alex did last night. I woke up, and he was just laying next to me starting at me. He asked me to scratch his back. David said he woke up around 12 and he was just laying between us talking to me. I was sound asleep though. Another thing that never happens. I woke up this morning feeling like I had just fell asleep but after what happened in the store I knew I was going to have to suck it up and get out of bed. After we dropped my oldest off at school, we went to get groceries and came home. Alex slept though it all, which was nice and surprising. David went in to work late today so he offered to take me to lunch. Ill have to write about our conversation later. Because I'm in bed again and falling asleep. Whataburger isn't on my OK to eat list, but I'm not feeling guilty because I don't think I even have enough energy to eat anything else today. I could barely push the seat belt release by the time we got home.

And here I am in bed. With my water. Propped up on pillows because its the only position that doesn't hurt to much. So tired. So weak. Angry that this is happening but thankful for another day.

Happy Tuesday!

Running Away

2012-01-01T22:26:00.000-06:00

A new year comes with new promise. This year one thing I would like to do is run. Maybe every day, probably not. Not because I don't want to but because running hurts me. I've been feeling lately like I am stuffed. And I kinda am with my liver and spleen so enlarged. Add that to being top heavy and running isn't the most coordinated or comfortable thing for me. I'm sure I look like a spaz doing it too but oh well.

Yesterday mom said that if I wanted to continue to do things all year that I needed to do them all today on the first day of the new year. I joked that I was going to get up early, make breakfast, smile as I served it, pull weeds, clean house, and run. Its almost 10 and the only thing I didn't do was pulling weeds. No to bad. I was going to run this morning, but I put it off. But when it hit 7 and still no run, I knew I had to just do it and get it over with. So we got home from the store and I went straight to it.

I never really push myself to hard. Some days I stop before the pain starts. Or I just tell myself one mile is enough or 20 mins. So afraid to push just a little bit farther. Until tonight. Tonight, I told myself I was going to run with out a break for a few mins and I didn't stop until I did. My treadmill has a little track that lights up with dots and I told myself I was going to run half way walk a minuet and run the rest, and I did. Half way thought the pain in my liver kicked in but then then I got a cramp in my foot and forgot about it. I walked for a bit but then picked it back up. It seemed like the more I ran the less I hurt. And then I realized I had past that point. The one where I usually gave up. I did it. I know I didn't run far or fast, but that doesn't matter to me. What matters is that I ran and I remembered just how good it feels. I used to run to ease my anxiety and stress. But this was something different. I'm excited to run again. I'm looking forward to my heart pumping, focusing in on my breathing, no music, just the sound of my feet. 30 minuets uninterrupted. Aside from feeling better mentally, I hope to lose some weight. Walking last year didn't seem to do much for me and so I hopefully pushing myself farther will do the trick. I plan on buying myself some new shoes after the first 10lbs are gone! And I really want some new shoes!

But right now I'm gonna work on my sleep goals and head to bed. After I make lunches for tomorrow. Oh how I am looking forward to our usual routine. Vacation is nice, but I'm ready for reality! Bring in 2012!

Hope for 2012

2011-12-31T15:45:00.003-06:00

This year was rough. But we all made it to the end. And I really believe we ended stronger than we started. I am so ready for the fresh start of a new year. So much hope.

I am hoping for good health for me. If this is not the year I get my liver, God please let Anna have hers. Give her the chance to enjoy the rest of her teen years. She is only a child. If I could, I would let every child go before me. But in my heart, even if its selfish, I pray for my call too. How could I not with 2 little boys of my own. If anyone gets their gift in the new year, I hope it is Anna! You can read more about Annas story HERE!

I have so many hopes for family this year.

If I could have anything this year, it would be more time with my family. The boys miss their daddy and I miss my husband. Thankfully his schedule has changed and for the most part, he is here every night for dinner! And we are all happier for it. I'm also hoping for some time for just the two of us. I hope that David gets a raise or better yet paid his worth! I hope that Anthony continues doing so well in school and enjoying it. I hope that Alex will learn continue to fine tune his speech and I really hope that he does well when he starts speech class at school next month. I hope that I am able to follow the lifestyle that I need to. I hope that I find more time to do things for me and am feel less guilty about it. I hope I continue to live life to the fullest. And cherish it all.

I hope for my brothers and sisters, I'm sure you know which one is for you...

That I get more time to talk to you. I miss our talks. A year of less stress and more smiles. Less tears and more laughs! I hope you find the happiness that seems to have left you over the past few years. You deserve it more than anyone.

That find your place in the family and realizes you are every bit a part of it as we all are. Don't be such a stranger. I promise to call you with more good news than bad this year! Come and visit us. The boys would love to finally meet you.

That you see just how beautiful your family is. You have been blessed beyond words. I hope that you guys get more time together this year than apart and I pray that it brings you all closer.

I hope that you find peace in the life that is laid out before you. Its not the easiest but its not a death sentence either. I'm not saying to give up, but don't let your past define your future. Those of us who matter know the man you are and the man you can be. We love you

I hope that this year brings you growth and experience. I'm talking about making friends, going out (and behaving)! Doing things that other kids your age are doing. It is such a big world out there! Keep working hard and having fun. This is going to be a big year for you.

I hope for all of the smoking and drinking, the fighting and backstabbing and the lying and sneaking stop this year. Its been this way for far to long and we have overcome so much together. Let this year be the year we all accept what has happened and work harder to only make it right. And I know its a long shot, but I hope this is the year we finally all get together. We need it. I would love it.

What are your hopes for the year? What are your resolution or goal for the year? I have yet to come up with any specifics, I want to make sure they are realistic and more meaningful this year. Here is to a happy and healthy new year for us all! Much love!

Greatest moments of 2011 (part 1)

2011-12-29T15:00:00.000-06:00

This year...

Alex turned 2

We saw "snow"

Lost teeth

Laughed

Learned how to ride a bike with out training wheels

Went to the Strawberry Festival

Anthony turned 6

Took a trip to the state capital and rolled on the lawn

Got new bikes...and helmets!

Started 1st grade

Took a trip to Houston and jumped on the bed for hours!

Added to the family

Helped add 6 more names to the Donate Life Registry

Discovered Angry Birds

Rode a bus for the first time

to be continued...

Laughter heals my heart

2011-12-29T01:21:00.000-06:00

This is me, asking for help...

2011-12-27T10:48:00.000-06:00

Last week I gave in and called Help Hope Live(formerly NTAF). They are an organization that helps transplant patients raise the funds needed to pay for their medical expenses associated with transplant. And with the average cost of a liver transplant over $500,000, medical bills can quickly get out of hand. Even with insurance.

Right now I am seeing my transplant team every 3 months. The total cost of the exam is over two grand with my portion of the bill ranging from $200-$300 plus a $35 copay. I am billed also for the labs I get drawn. Before every appointment I also have scans done. Those usually run about $250. There is also my yearly endoscopy in which I not only get billed from the Dr, but the hospital as well Adding another $4-500. As far as medication goes, I am thankful that right now I am on pretty minimal meds. What worries me is the post transplant meds, which I am told are VERY expensive. I will be calling the insurance company today and asking more about what is and isn't covered as well as hoping they can give me estimates of what costs I will have.

Now to the fundraising part. I need to put together a committee. I've been told it works best to appoint someone as chairperson. And they can serve as the primary contact and help the communication between the other volunteers. It's so hard for me to ask for help, especially when I have but a few friends here in town. I don't see any other way to help ease this burden on my family. If any of you think you could help, please let me know. If you are local, fantastic. If not, there are still many ways you can help. Even if you think you can only help a little, it will mean so much more to me and my family. Feel free to leave me a comment here. Or you can shoot me an email. I would really appreciate any and all help. From the bottom of my ~~heart~~ liver.

**Once I have someone who is willing to be chairperson and others that will help, I can call Help Hope Live and let them know I'm ready and we can get the ball rolling!**

Merry Christmas

2011-12-25T13:51:00.000-06:00

From my family to yours!

PS~ More stories and photos to come :)

Dazed and Confused

2011-12-14T01:01:00.000-06:00

I am so lost right now. I'm frustrated and full of guilt. I'm exhausted, annoyed and lonely. I laugh at myself and end up hurting my own feelings. I feel like a failure. A burden. I don't feel like me.

Tough words to swallow but its true. I couldn't even tell you what I did today. I have been writing forever now and this is how far I've gotten. My mind is wandering and I don't like where its going. It's only Tuesday and I've already managed to screw my week up.

First mom fail of the week, I forgot to turn in the volunteer slip for Anthonys class Christmas party. He want to thrilled about that. I embarrassed him which is embarrassing for me. I also forgot Year book orders were due today. Told David about them last night. He was thrilled. I could see his frustration and that was like a knife to my gut. Tonight I told him I feel like a burden and that I hate frustrating everyone. When he asked who, I said him. He reminded me that he isn't "everybody". But to me he is and to know that I cause him more stress is a horrible feeling.

Most days I'm just playing the part. I get up make sure Anthony goes to school. Sometimes I forget to sign his reading log. Last week I even forgot his homework. I try to make sure we have everything when we leave but I'm always forgetting something. I am constantly thinking where the boys are. Running things through my mind. Thinking of what needs to be done, but nothing sticks. I forget it all. Frustrating doesn't even begin to cover how this makes me feel.

But what happens when the day comes that I can't get out of bed? Who will make breakfast and wake the boys up? Who will pick them up from the bus stop? Who will make dinner and do his reading before bed. God help me when I am in the hospital because that is going to kill me! I want to be here for my boys to do all these things but I feel more like a failure than anything else right now.

Will I ever really accept that this is happening? I keep saying I have and reality keeps coming back to smack me in the face. How do you accept being sick? How do you ask your family and friends to be patient with you? I feel like cutting myself off from the world. I have started to already. Having more bad days than good. And the bad isn't even close to the worst it will be. Lord help me get through this.

Adding to the family?

2011-12-07T08:06:00.001-06:00

First, no, I am not pregnant. As much as Id love to be, I think I am finally coming to grips with the fact that I more than likely will never be pregnant again. And that is OK. What I'm talking about is a little something more like these guys.

Photos from Pinterest

Adding to the family isn't something we take lightly. I would likely end up being the prime caretaker. And I am sick. As crazy as that sounds to you, I have been reassured by most of my transplant buddies, that their fur babies have been such a blessing through out their sick days. And its not just me that wants a dog. The boys have been wanting a dog to "love" them back. And our 11 yr old Chihuahua just isn't the loving type. Surprisingly David is on board, but he comes with demands. Well one demand, he wants a Great Dane. Yes, that is all he is asking for.

We have been spending our Saturdays at our local Petsmart with the San Antonio Great Dane Rescue. It was there David fell in love with Tucker. Beautiful dog. Fawn with a black mask. Much like the first puppy up top. There there was Apollo, who we have been back to see twice now. First it was just David and I and then we took the boys. Anthony is still talking about him and I heard him trying to teach Alex how to say Apollo. Alex calls him Ayalo. The boys loved on another dog named Bud. He was as tall as Anthony and boy did Anthony love him. He was hugging him the whole time and said he was the perfect size for him to hug. Neither of the boys were phased by the size of them. Which was really nice to see. Then again neither one of them are scared of any animal. I have had to drill into their heads that some animals are not friendly or safe!

But the deal was, we have to wait till after Christmas. No impulse puppy buying. Chico needs to get a check up first. Adoption or Foster only, no fancy breeder. And it will have to be a whole family agreement. Its not going to be an easy decision by far. But we are all excited. We most likely will end up fostering at first. Its sad how many poor babies are given up, mostly because they are to big. I guess people assume Great means Good and not huge!

Speaking of huge, this is something we are aware of. And something we are OK with. Yes we know that there will be drool and slobber. And food and vet bills. That is all why we are taking this slow and waiting till the right time.

I have also decided that I would like to work with animals after my transplant. Not a big surprise here! If this will be possible, I don't know. But I will have to talk to my transplant Drs about it all. I still have to have the dog talk with them too. They know I already have one dog and don't seem to mind as long as I'm not dealing with the poop. I have gloves for when I bathe him. So I am being careful already. I was thinking about volunteering at the shelter or with a rescue group. But again, I have to run it by my Drs. And hopefully they will see that doing something I'd love (with precautions) is much better than doing something I'm miserable at. We shall see.

Formspring Reply

2011-12-03T01:37:00.001-06:00

How are you such an amazing person while going through all of this? Keep it up, you truly are great! Thank you for being the hope wisperer for all of us.

That is sweet! Thank You. I don't see myself as amazing. I'm just trying my best to keep moving forward. And I have such supportive family and friends that have been such a blessing at keeping my head in the game! And comments like this remind me why I try to stay so positive. We have to lean on each other for comfort and strength sometimes and I am always glad to be here if needed :) Anything to help. Thank You again!

Ask me anything

December at last

2011-11-30T20:22:00.001-06:00

Oh December. I love the holidays. Who doesn't right? For a second there I was in a panic because I couldn't seem to get myself in the spirit. But today seemed to be the day that changed that. Everyone was out of the house. Except mom, but she was in her room all day. So it was just me. I got the rest of the decorations on the tree. Got out some more decorations. Looked online for a few gift ideas. Then I hung up some lights in the boys room. Figured they would enjoy that. And they did. Anthony fell asleep "under the stars" in no time and Alex joined him shortly after! Now I am just going though some photos really quick before I go to bed.

Can you believe that last set of photos on my memory card were from Halloween! That is a whole month gone by that I didn't even bother to take out my camera. I love the camera on my phone, but I love my camera even more. Poor baby has been neglected. So I'm leaving her out where I can see her and use her more! Tomorrows Advent activity is a trip to Sea World to see if Shamu celebrates Christmas. Pray it doesn't rain. If it does I'm sure we can find something instead.

Speaking of pictures here is my favorite shot of the night :) Sweet Dreams!

Toot Toot

2011-11-30T14:37:00.001-06:00

Want to hear a secret? You’re awesome. (It’s actually not even really a secret.) This is going to be hard for you – Health Activists are modest, selfless creatures by nature – but you simply must give yourself props today.

Write three things you love about yourself – things you’re great at – or just want to share about yourself that are important to you.

Its the last day of National Health Blog Post Month. I cant say I did all 30 post but I did what I could and I think I'll revisit the ones I missed soon. It was a lot of fun. I learned a lot about other peoples illnesses and a lot about me. I cant wait see whats next! Thank You to those that helped put this together.

So 3 things I love about me....

I am a good wife and mother. At times I have questioned this, but I know in my heart that I am doing the best I can and that is what its all about. I love my boys and husband more than life itself and there isn't anything that I wouldn't do for them. I refuse to let my illness get in the way of that. We know that some days will be better than others, but together as a family we will get though them. I have been truly blessed with a beautiful family and I will never take them for granted!

I am open. Its proven, I just cant hold things in. I like to talk my problems out. I like to get things off my chest. There are a few things in my life I like to keep to myself, but for the most part, if you ask, Ill answer. I may over share at times and sometimes I think out loud. Did I just say that? Anyways, I think its important to share. Your thoughts and opinions. Speak up when you think you could help make things better or spread the word for a good cause..DONATE LIFE.

I hope. Even if its just a little, I always have hope. And a smile. I hope that people aren't really as bad as they seem. I hope that even the worst situations turn out for the best. I hope that one day there will be a cure for cancer and that all childhood illnesses will soon have a cure. I hope that I will not have to wait much longer to get my transplant and that I will heal quickly. I believe there is hope in everything and everyone. I hope I am able to do all 30 days next year.

This post was written as part of NHBPM - 30 health posts 30 days: http://bit.ly/vU0g9J

Say What? Bottoms up?

2011-11-28T11:17:00.001-06:00

As advocates, you're constantly in the health conversation: looking at what's being said and trying to help people navigate new diagnoses, treatments, symptoms, and stigma. You work hard to put great, honest info out there wrapped in narrative - truly putting a face to what patients go through every day and really making a difference.

So it must be totally frustrating when you come across something false, incorrect, stigmatizing, or just plain outrageous. Let's use that today. What is the most ridiculous thing you've heard about health or your condition? Was there any context? What did you think at the time you heard it - and what do you think of it now?

How do you address these myths and some of the other absurd internet info on your condition?

A few days after I got my diagnosis, I had broken the news to family and was now debating if I should tell any one else. It wasn't something that I spent days thinking about. As a matter of fact, I wrote out and email and sent it to my closest friends. And then started this blog. I am not one to hold things in and hide them away. Seeing that there was no one else sharing their life with Budd Chiari Syndrome only proved to me that it was the right thing to do. After all, people needed to know what life was like with this disease and that it would be OK So I opened myself and my life up. Updates, photos, stories. I was not at all prepared for what came next.

When I added the "Ask me anything button" people asked, and their questions broke my heart. Although I have a feeling the people asking are people I know who just had nothing better to do with their lives. And that is even more sad. One person asked "Do you expect your husband to stay with you now that your sick" Another was "How to you expect to be a good mom when you cant even take care of yourself" But the one comment that hurt the most was "The apple doesn't fall far from the bottle, does it?"

Really people? Come one! Do people really think that everyone with liver disease is an alcoholic. Yes my family is known for drinking and yes, I myself have had drank myself stupid, but what happened to me has nothing to do with drinking. Alcohol actually thins your blood and I have a blood clot in my liver. So maybe I should have drank more? I take that back. I would rather have this failing liver than to have to struggle with that addiction any day.

And it didn't stop there. I have actually had friends say "Damn, guess we drank to much back then" and "I didn't know you still drank like a fish" People that matter to me. I know they meant it in a joking way, but it still felt like a knife to my heart. I did not do this to myself. I could not have stopped it. It is what it is, whats done is done and I am just trying to live the life that was laid down before me.

And what makes me sad is I have heard time and time again from my liver buddies that people have thought the same of them. They are in the ER and even nurses comment on them being to young to have drank themselves in to liver failure. There are so many other causes. As a matter of fact, the leading cause of liver failure is TYLENOL! In fact Johnson and Johnson lowered their max dose on Extra strength Tylenol from 8 pills to 6. This should have taken place this fall, but I haven't checked yet. You can read the complete story HERE! There are liver cancers, Chronic and Autoimmune Hepatitis, Primary Biliary Cirrhosis, Primary sclerosing cholangitis (PSC), Wilsons Disease, Fatty liver which yes is more commonly caused by alcohol abuse, but not always. I could go on and on.

The truth is, before I ended up with liver disease and I used to think the same. People who had bad livers and needed transplants must have had drank way to much. I have no problem setting the record straight. Now I know better and I hope you do too!

This post was written as part of NHBPM - 30 health posts 30 days: http://bit.ly/vU0g9J

Remember when

2011-11-28T08:29:00.001-06:00

Free write a post that starts with the line “I still remember…” See where a memory takes you. Write for 15 minutes (without stopping if you can) then go back and see what you came up with. What was the story that you told?

I still remember the days we used to go to the park for hours on end. When the house was filled baby belly laughs and the pitter patter of tiny feet running around. I remember the biggest decision of the day was sweet potatoes or bananas. Bottle washing and pumping in the middle of the night. I still remember that newborn baby smell and that heartbreaking crying. Tiny peeling hands and the sweetest little toes. The cooing and the spit bubbles. The feeling of calm when they fell asleep in my arms. The hugs in the middle of tantrums. The first time they said Momma and I love you! The bumps and bruises from learning how to crawl, walk, run and ride a bike. The tears over broken toys and the smiles at the sight of new ones. I still remember the excitement I felt when I learned they were coming and the falling in love with them the second they were placed in my arms for the first time. The butterflies on the first day of school and the consoling after his first bad day. I still remember the pride I felt watching him get on the school bus for the first time and the fear when he got off on the wrong stop. I still remember all the ultrasounds and stress tests. The way they rolled like crazy when certain songs were on the radio and the way they always calmed down when I talked to them. I still remember the first time David felt him move and the way he looked when he held his boys for the first time! I still remember promising them that no matter what I would love them forever. That I will always do whats best for them and that I would move mountains to keep them safe.

Yes, I still remember the days when my boys were just babies. They grow so fast. And as much as I want to stop it and just keep them little, I will sit back and enjoy the boys they are now and the men they will become.

This post was written as part of NHBPM - 30 health posts 30 days: http://bit.ly/vU0g9J

Its ok to laugh!

2011-11-22T10:48:00.001-06:00

Today we are writing about things that make us laugh. Laughter after all is the BEST medicine right? And for many of us that are sick we know just how far a little laughter can go!

There is never a shortage of humor in this house. Especially when you add the boys in the mix. Each in their own way, can make me laugh until I cry. They keep me laughing though all the bad. But its their faces that crack me up the most. Funny faces keep us out of trouble. Sometimes with the boys are arguing I let make faces at each other. By the time they are done laughing they forget they were even arguing. Or when I am frustrated, I will make a funny face at them and everyone wins. No yelling just laughing! Just the way we like it around here.

This post was written as part of NHBPM - 30 health posts 30 days: http://bit.ly/vU0g9J

Repost: Do I look like I need a liver?

2011-11-19T00:29:00.001-06:00

Day 19: Grab a post from your archives and re post it! Add a few sentences at the beginning to frame it. Why you chose it. Why you liked it. And why it should be shared again.

In doing this challenge, there is one thing that stands out even more than ever. There is not a lot of talk about liver disease or organ donation. As I've said before, I don't mean it to belittle any other sickness, but Liver Disease is very serious and there are 112,624 as of today 10:22pm waiting for a life saving organ transplant. I think sometimes we get brushed of, because well, many of us just don't look "sick". Yes we all have our bad days, but its not until we are deathly ill that it shows. That's when we turn yellow from jaundice and swell up with fluids from ascites. We start to lose weight...see, I'm not that sick yet! I haven't been confined to a wheel chair and I have not had any hospital stays. But its coming. And for now, while I look and feel OK, I am going to live life to the fullest. Cherish every moment with my family and share with the world my story.

Do I look like I need a liver?

Yes, today is April 1st. Or as many call it April Fools Day. But for me and around 110,000 others today is something else. Something bigger than jokes and pranks. Something very close to our hearts. Or in my case Liver. Yes, today is April 1st. The first day of Donate Life Month!

If you were only a stranger, passing me on the street or in the store. Or if you were a telemarketer or hell, a bill collector, they call me all the time. You would never guess that I am on the Liver Transplant list. Most people when I tell them have the same come back. “But you look fine” And yes its true, I am still able to function on my own. I am not lying in a hospital bed with tubes everywhere. I am not in a wheelchair. I still smile. I take care of my kids. I laugh and love just like anyone else. For the most part.

But on the inside I am not fine. My liver is swollen with blood. It hurts. It doesn't filter out the toxins in my blood so they travel to my brain leaving me confused and unable to concentrate. Slowly I am getting sicker and sicker. I live each day as its the last. Praying that my family knows just how much they mean to me. And and that my children don't forget me or how much I loved them. Each night I give hugs and kisses. I always say I love you when hanging up the phone. I remember the good times and I forget the bad...

There is nothing else I can do. But there is something you can do. Please take a few minuets to stop by the Donate Life website and register to be an organ donor. Ask your friends and family to do the same.

So what is someone on the transplant list supposed to look like? Like me :-)

This post was written as part of NHBPM - 30 health posts 30 days: http://bit.ly/vU0g9J

Inspired by Ricki

2011-11-18T23:40:00.001-06:00

A comment as a blog post. Pick someone else’s post (from the past or from today) and write a comment to them. Write that comment as your blog post for today. Link back to them to let them know you were inspired.

My Comment is on Ricki's latest post over at Ricki's Journey.

Buddy, I haven't heard from you in forever and I cant tell you how excited I was to see a new post here. I remember all your pep talks from before you received your first liver. You are such an inspiration to me. So easy to relate to and you have made my journey less lonely. Sure there are others out there that mean the world to me, but there aren't many moms out there on the liver transplant list that are so willing to share their experience with the rest of the world like you have. I am so glad to hear that you are out of lock up. It makes me smile to know that you got to trick or treat and do all the other "normal" mom stuff. But you are so much more amazing than normal. Seeing you fight, even if its a struggle gives me hope that one day I will have the same strength as you. Then I read the sad bits. The stuff that you and I have joked about because we don't want to cry about it. Thank You for having a sense of humor, I'm glad I'm not the only one :-) I miss our chats dearly, but It makes me so happy to hear all the good things. Please know that you are in my prayer and here is a ((HUG)). You are truly an inspiration to me.
-Kim

This post was written as part of NHBPM - 30 health posts 30 days: http://bit.ly/vU0g9J

Letting go of the Fear

2011-11-17T13:51:00.003-06:00

I don't want to be sick. No one wants to be sick, I know, but I'm so afraid of getting sicker. And its not a matter of if I get sicker, its just when. Waiting for my body to give out on me. Constantly being aware of every little twinge and pain for fear that its beginning. Every nose bleed, every bruise brings fear. Every stabbing pain makes my heart stop for a minuet.

I often guess what is going to come next. Will it be the varices in my esophagus that will make me vomit blood? Or will it be ascites that will make me swell with fluid to the point of looking 9 months pregnant again. Or maybe I will just slip in to a coma from my encephalopathy. Yes these are all thoughts that cross my mind each and every day. Or maybe my kidneys will give out first. Then I will have to wait for a liver and a kidney.

And whats worse is that I'm not going though this alone. You would think not being alone would make it easier, but for me sometimes it makes it worse. I'm scared enough going though this myself, I don't want my husband and especially my boys to see me go though any of this. I don't want to miss school plays and activities because I am in the hospital. I don't want my boys to see me hooked up to machines and tubes. I don't want them to be any more afraid of me leaving them as they already are. Or as I am of leaving them.

They have already been though and see enough and its only just begun. My 6 year old can tell you stories about my liver and how I need a new one and my 2 year old has seen me throw up so many times that when he is sick he knows to run to the toilet and brace himself for it. They know when the alarm on my phone goes of that its time for me to take my medicine and ask me multiple times a day if I am feeling OK. They know just when I need a hug and are always ready with open arms. I am constantly quizzing David to make sure he is up to date on my doses and medications. And I tell the poor man any little thing that could be a "sign" just so he knows whats going on. I know it worries him, but when I do get sick, he needs to know whats been going on so he can answer questions for me. I hate putting them though all this. And on most days the guilt just about eats me alive.

But there is nothing I can do but embrace what is laid down before me and be as prepared as we can be. I know our family is going though a lot with my illness, but I believe we will all be stronger for it. At times it seems like its to much for the boys. Like maybe I have been to forward with them, they always find a way to calm my thoughts. They are both happy and very adjusted boys. They are loved beyond the moon. It shows in the corners of their mouths when they smile, in the sweet breaths in between laughing fits and in you can see it in their eyes. When they hug they squeeze me tight and when they say I love you you can feel it in your heart. Yes my family is on this road together. Its going to be a rough ride, but we will be holding on tight to each other and together we will get though this!

Putting away the fear for a while. Until it creeps back up on me. There is so much I have to enjoy and live for right this moment. I'm gonna give the boys bigger hugs and kisses tonight. And spend as much time with David as I can when he gets home tonight. I love that I can tell him my fears and he can always calm them. Its a little less scary with you remember you aren't alone!

This post was written as part of NHBPM - 30 health posts 30 days: http://bit.ly/vU0g9J

Can I?

2011-11-16T11:35:00.001-06:00

I think I can get through the holidays with out crying

I think I can be a better listener and friend

I think I can complain a lot less

I think I can take a few mins each day for myself

I think I can go to bed a little earlier

I think I can sneak in more hugs and kisses in the day

I think I can talk to all of my brothers and sisters in the same week

I think I can send out Christmas cards this year...on time ;-)

I think I can make more healthier home cooked meals for the family

I think I can accept the help that is being offered to me

I think I can get though the rest of this challenge

I know I can take better care of myself and not feel guilty

I know I can be a more patient wife and mom

I know I can stop trying to help people who will only hold it against me

I know I can put my families needs before all others

I know I can be a little more social...In real life.

This post was written as part of NHBPM - 30 health posts 30 days: http://bit.ly/vU0g9J

Lonely no more

2011-11-11T08:47:00.001-06:00

The road though life with Liver Disease is a lonely one. Or it was when I first found out that is what I was dealing with and started writing here. I couldn't find any other people out there with Budd Chiari Syndrome. Nothing more than medical reports and a few headlines. I kept writing to get the thoughts out of my head, to keep my family updated and just in case one day someone might stumble upon my blog and actually find it helpful or interesting. Most of my comments were from family and friends, and the occasional spam bot.

Then one day out of the blue a woman writes to me. All the way from the Netherlands to tell me that she came across my blog and she too has Budd Chiari Syndrome. I could not believe it. Someone all the way across the world found my blog. We talked back and forth about my being pregnant when diagnosed. She told me there, many didn't believe you could have children if you had BCS. She offered comfort and friendship.

Why didn't I think of it before? A Facebook search for Budd Chiari led me to a whole group of folks who also had BCS. Some were doing better than others, but when I introduced myself, I was overcome with welcomes and hugs! That is when I found out there were even more places I should have discovered already. Places like Living with Liver Disease, The Waiting List and Transplant cafe and eventually here to WEGO.

It has been a blessing to me to have met the people I have met though these communities. Its so nice to find support in people who don't even know you but know exactly what you are going though. Who don't judge you. Who will answer even the silliest of questions. Who can tell you what to expect with out sugar coating it. Truth. And suddenly I wasn't so alone anymore.

I love hearing from you all. In comments or emails. On Facebook or Twitter! I love talking about my journey, parenting, anything. I am pretty much home bound so its nice to get a hello every now and then. So don't be a stranger!

This post was written as part of NHBPM - 30 health posts 30 days: http://bit.ly/vU0g9J

Green ribbons for all

2011-11-10T09:40:00.001-06:00

I dream of the day when I see green ribbons everywhere I turn. I don't mean to sound out of place, because I understand how important awareness is for other causes. Cancer, lupus, diabetes to name a few. But I cant say I have every seen anyone wearing an organ donation awareness shirt or hat. I've never been asked at the store to donate a dollar to help the cause. Our donate life walk had hundreds of people attend, but I want to
see thousands.

Right now I am a member of a few online Transplant communities. Its amazing to see how many people there are that have had or know someone who has had a transplant. Its amazing to hear their stories of how hard they fought to live and amazing how their gift of life has changed their lives. But outside those groups I have never seen anything promoting awareness for us. That needs to change. I want to see banners on Facebook and for #Donate Life to be trending on Twitter. I want to see our stories on the front page of MSN and yahoo. And I want to help spread that awareness. Through this blog and anywhere else I can. Educating people on the importance of being organ donors is critical to us. We could have all the money in the world for the best research and studies, but its the people, its the donors who save us. When I say that we could not live with out them, its the straight truth. Its people saving people. With out more organ donors, more of us will die. Waiting.

Please visit Donate Live America and register to be an organ donor. Be a hero!

This post was written as part of NHBPM - 30 health posts 30 days: http://bit.ly/vU0g9J

I am Hope

2011-11-09T23:49:00.000-06:00

My personal brand. As a Health Activist, you are a front-facing leader. What do you imagine you look like to your readers? What qualities do you possess. It’s ok to toot your own horn today – you have full permission to indulge. And don’t hold back.

What do I look like to my readers? Good question. But I'm not really sure how to answer that. Id like to think I look like me. Id like to think that I'm am the kind of person that when someone reads my blog they can hear me saying them. Or the person that when people meet, that meet me and say I am just like they would have imagined. In a good way of course! Because what I write is me. My life, my experience, my words. Its all me.

I honestly was going to uses a skip for this prompt. I was sick as a dog yesterday and just didn't have the energy to sit down and write this out. Better late than never right?

I sat here staring at the prompt and wondering my personal brand was. Do I have one? I just couldn't come up with anything. One thing I have been struggling with is reading and comprehending what I'm reading. Id like to thank my liver and HE for that. But when I read things, even Anthonys first grade homework, I have to read and re read and then try to remember and understand what to do. And of course not get off track like I just did. OK

A front facing leader. Me? Nah. I'm more of the sharing type. Being front and center, not my thing. Unless its for a good cause. Wait. Liver Disease and Organ Donation awareness is a good cause. And I would do anything I could to help spread that awareness. So, I guess that makes me a leader? Well I'm getting there anyways.

What do I look like to my readers? Good question. But I'm not really sure how to answer that. Id like to think I look like me. Id like to think that I'm am the kind of person that when someone reads my blog they can hear me saying them. Or the person that when people meet, that meet me and say I am just like they would have imagined. In a good way of course! Because what I write is me. My life, my experience, my words. Its all me.

But a brand? My brand? I'm lost. Or I thought I was. I made a comment on twitter that I might skip this prompt because I had no idea what my brand is. And got this from my ever so sweet and supportive friend Stacy.

@KMunoz28 your "brand" my dear is Hope! With a huge scoop of perseverance & the sweetest taste of motherhood that ever was!! #justsayin

Hope. When I started this blog, the first word that came to mind was Hope. It was what I needed. What I knew would get me though this journey that I'm on. When I started to research Budd Chiari Syndrome, I felt hopeless. There aren't very many people out there with it. Well actually there are quite a few, but no one talking about it. I wanted to know what to expect and what I was facing. And came up with nothing more than mortality rates and one blog in which the lady abruptly stopped posting after writing that things were bad. Yes, I felt hopeless. I dug deep and found the strength to fight. I could not just give up. My boys needed me. At the time my oldest was 3 and I was pregnant with my second. I found hope. And I'm here today sharing that hope with all of you.

**Special thanks to Stacy for always knowing how to help me. If you are a parent, or not, you have to check out her website Kids Stuff World. This is one amazing mom, woman and friend! She is a blessing**

This post was written as part of NHBPM - 30 health posts 30 days: http://bit.ly/vU0g9J

My lovely lovenox legs

2011-11-08T15:55:00.000-06:00

*for some reason Black Eye Peas My Humps is stuck in my head now*

I started my Lovenox again on Saturday. I have to continue them until next Saturday. I get to take Sunday off from all my meds and them Monday I can will be getting my wisdom teeth out! Praise the Lord! These things are killing me! I'm thinking I might have to move to my stomach because when I wear shorts I look like a druggie. Seriously. I went in to the gas station and I am pretty sure everyone was checking out my legs. And that is in no way a good thing! The good news is they aren't as bad as they were last time and I am only doing them for a week! Woo hoo! So with out further interruption, let me present to you my Lovenox legs

And yes, I know I have the legs on the opposite sides but when I did them the other way around it looked like one big mangled leg and kinda freaked me out. I really sucked at lining them up though. That is driving me nuts! OCD much?!?

3 Truths and 1 lie

2011-11-07T21:46:00.000-06:00

Here are 3 truths and a lie. Can you guess which is the lie?

The only way to cure my Budd Chiari Syndrome is though a Liver Transplant.
I have a third kidney but I need a new liver.
I was told by one of my Drs that I should deliver my baby at 28 weeks so I could focus on me.
There is a 50% chance I could give the boys the same blood disorder that caused my BCS

This post was written as part of NHBPM - 30 health posts 30 days: http://bit.ly/vU0g9J

Case of the Mondays

2011-11-07T07:11:00.000-06:00

I'm tired. Of everything. Last night, the little one wasn't feeling well and went to bed at 7. I was in bed by 9:30. Next thing you know its almost 11 and I hear him out in the living room talking to David. Who of course is ready to go to bed. So I have to get up and hang out with him. He was wired! It didn't help that I have a nasty head cold. The one where I just want to stab by head to let some of the pressure out. Instead I sat there with my sweats and robe and finished up yesterdays blog post. Yawning and nodding off the whole time.

I'm tired of being sick. I'm tired of taking medicine. I'm tired of my Lovenox injections. I'm tired of thinking about the pile of medical bills I have to pay. I'm tired of trying so hard to act like everything is OK. I'm tired of the watching the same episode of Mickey Mouse over and over. And tired of having to fight the boys about baths and bedtimes. Tired of all the bickering and drama around here. I'm just tired of being tired.

I just want to sleep and not have to get out of bed until I want to. I want to be able to eat what ever the heck I feel like and not hurt after. I want to be able to pay off my bills or better yet not get billed so damn much. I want to catch up on all the shows just sitting on the DVR. I don't want to have to be the mean mom! I want to not be so tired of everything. Its not me at all. Its sad when I am thinking a few nights in the hospital would be like a mini vacation at this point. I want this day to be over.

I'm taking today off. And I will check back in to life on Tuesdays. Get all the things I need to get done, over with. Tomorrow I will be productive and energetic. OK maybe not energetic, but enough to get what needs to be done, done!

This post was written as part of NHBPM - 30 health posts 30 days: http://bit.ly/vU0g9J

If I could change the world...

2011-11-07T00:08:00.001-06:00

This one is an easy one for me. If there was one thing I could change, it would be the lack of registered organ donors. Every day an average of 18 people die waiting for a transplant. And every 10 minuets another name is added to the list. Its sad. I know what I would change, but I don't know how. I set a goal to get 5 people to register this year and made it to 6. That is nothing when you consider there are over 112, 813+ people waiting for their call.

I don't see why people have to choose. How can you not want to donate? What could you possibly need your organs for after you are gone? You could save 8 people and enhance the lives of so many more. All you have to do is register. Give a father the chance watching his son play ball and walk his daughter down the isle. Give a mother more time to hold her children tighter and tuck them in at night. Give a child the chance to experience all the joys of just being a kid and to live a full and happy life. Everyone wants to be a hero. Here is your chance!

I'm hoping to get more involved next year in raising awareness for organ donating. This year I raised $222 for the Donate life walk. I didn't make my $500 goal, but it felt so good just helping. And I will try again next year! I'm also thinking about making somethings to help spread awareness. Shirts, bracelets and that kind of things. I'm open to ideas though, so if you have any, please let me know!

This post was written as part of NHBPM - 30 health posts 30 days: http://bit.ly/vU0g9J

5 things that changed my life.

2011-11-05T00:35:00.000-05:00

Day 5 of 30. List 5 things that changed your life as a patient, caregiver, or Health Activist and how.

1.My Third Kidney
One thing you dont want to hear during your prenatal ultrasound "Oh, you have a 3rd kidney?!?" A what? Yes you read that right! In the middle of the excitement of seeing our first healthy baby, the tech drops that kind of bomb on us. Turns out there is such thing as a pelvic kidney. Who knew. I went the next 3 years thinking one day I could donate it to someone. Turns out I'm the one needing and transplant. No extra liver in there.

2. My Second Fetal Scan.
Another thing you don't wan to hear during another prenatal ultrasound (3 years later) "Ummm The doctor is going to come in and explain my findings to you" Yes you read that right again. Another baby another crazy ultrasound. This time it was noted that my liver and spleen were severely enlarged. Remember that 3rd kidney? It was actually my spleen that had been pushed into my pelvis because my liver and growing baby had pushed it out of place. So, I traded a spare spare kidney for a bum liver.

3. Finally a diagnosis.
My first visit with the GI doctor, I was a nervous wreck. He sent me straight down to get scans after my appointment and from there I went home to wait for a call. As with most calls I was thinking he would call me back first thing in the morning the next day. I remember answering the phone with a smile. Trying to hang on to some hope. I mean really, how bad could it be? He described my liver as impressive. And then told me that was not a good thing. He told me that I had what is called Budd Chiari Syndrome or blood clots in the veins that carry blood out of my liver. I know he said something about finding a doctor in Houston that was willing to do scans on me. No one local would because I was already high risk pregnancy and they didn't want to risk it. The rest of the conversation in fuzzy at the moment. I know I have a photo of the page I wrote my notes on that day. I went down stairs and tried to explain what I had just been told to David and his Mom but my lips were chattering so bad and the lump in my throat just kept growing. I about passed out from fear. I was sick, I was going to need a liver transplant, and the was told I would need to deliver my baby as early as possible to save my life. Pretty life changing stuff If I do say so my self.

4. Unexpected Letter
May 2010. We started the month off so great. We spent Anthonys 6th birthday at the beach. All he wanted was to go to the beach and spend the night in a hotel. It was our first family vacation/get away that it was just the 4 of us. And it was wonderful. The last few days of the month we spent with family in the Valley. Davids Grandfather had passed away. It was a sad time. And I was glad to see the month go. It was a 5 hour drive home and we stopped to check the mail. I saw a letter from the transplant clinic. I sat in the car and read. "Dear Mrs. Munoz. The transplant team here at Methodist Specialty and Transplant just wanted to let you know that as of May 25th you have been listed with UNOS on the Liver List." It was real. I was really going to need a transplant. That was one of the days I was reminded that it was all real.

5. Needles
Anyone who has any kind of illness knows that you can not be afraid of needles. I have always been. I once passed out in front of the whole school getting a TB test. The little 4 prong pokes. And after that I got all shots and tests done in the hospital with nurses around. Shortly after I was diagnosed with BCS, I was told it was caused by a blood disorder. And that I was going to have to take blood thinners for the rest of my life. Easy Peasy right? Until I found out that while I was pregnant, those life saving blood thinners came in the form of twice daily self injections. I went from being the girl who go queasy just thinking about shots to being the girl who sat in the bathroom and had to face that fear. Sticking the needle in my leg took a while, but the pain was nothing compared to the burn that the Lovenox gives. I'm telling you, its burns like hell. I over came my fear of needles quickly. And now tomorrow actually I have to start them again for a week. Once again I'm freaking out. David offered to do them for me. And promised he would be nice. I told him I'm more afraid of the Lovenox itself than the needle. Id take 100 needles over 1 burning bruising shot of lovenox. I'm a wuss about it, but only that. Blood draws, vaccines, anesthesia and even my epidural are nothing anymore! I am no longer afraid of needles.

This post was written as part of NHBPM - 30 health posts 30 days: http://bit.ly/vU0g9J

The orange box

2011-11-04T08:15:00.000-05:00

Day 4 of 30. What happens after you press “publish.”

I'm going to guess its different for every one but my button is an orange box. With the dreaded words publish written so neatly in it. I guess dreaded isn't the right word. As I don't so much dread sharing my thoughts with you all. But you bet I sit here and stare at my draft for a long while before I click it. And after I do, I go back and double check the spelling. Even though I spell check a hundred times, I always miss something. Some days I don't even bother. I write, hit publish and never look back. Mostly when I am venting. Or when my mind is over run with toxins and I'm all loopy.

I have new posts sent to Twitter and my Facebook page automatically. Because lets face it, there is no way I would remember to anyways. There is a few times where I have re shared my posts on Twitter because they were posted either to early or late when no one is around though.

How many times do you go over your post before hitting publish? Have you ever hit publish and then changed your mind, and had to delete it? Yeah...me either ;-)

This post was written as part of NHBPM - 30 health posts 30 days: http://bit.ly/vU0g9J

A letter to the 18 year old me

2011-11-03T22:02:00.000-05:00

Dear Kim,

Look how far you have come. It was close, but you made it. Now its time to leave behind all that you have ever known and find your way in the big bad world. I promise you its not as scary as it seems. You are going to go though more heart ache and pain than you can have ever imagined, so live now!

Right now I know David is your everything. Make sure he knows that and appreciate him. Make him feel as loved as he makes you. Always be there for him, but give him space too! Word to the wise, when he is sick, just leave him alone. He is going to be the rock that keeps you settled when your whole world gets turned upside down. Hang on tight.

One thing you will have the hardest time with is forgiving mom and dad. They are who they are. They are who they choose to be and that decision has nothing to do with you. It is not your job to fix them. So learn to love them just the way they are. Forgive them when they say things that you know they don't really mean. Talk to them every chance you get but know when to cut the conversation short. They love you and you love them. Forgive them for the mistakes they made when you were younger. The sooner you can do this the sooner you will realize just how much you really enjoy their company and love.

Another thing you are going to want to get over is the guilt you feel for leaving the younger 2 at home. You did not leave them behind. They are not your children and even though you will stay up many of nights worried sick about them, you have to accept that you did all you could do while you were there. You could not stay any longer. And you had no means of bringing them with you. You have done all that you were able to and one day they will thank you for it. Even if they make you feel horrible about it first. That's what little brothers and sisters are good for. Be there for them always.

Speaking of children, never forget the baby you lost. And to be completely honest with you, you will lose another. Your heart will shatter in to a million pieces. You will blame yourself, you will blame David, you will blame anyone you can. Its no ones fault. Be patient. One day you will be surprised by a positive test. You only need one. Maybe 2. Not 15. Enjoy being pregnant. Love your body as it grows your son. Use lots and lots of cocoa butter. And rest. Pack your bags early though. Because this kid is going to surprise you. After he is born you will feel a love you never knew existed. You are a going to be a great mother. You will love everything about your life as a mom that you will be anxious for another. Again be patient. All good things come with time. Before you know it and when you least expect it, you will just know it. Baby # 2 is going to be your saving grace. Give him a strong name that he can live up to. He won't let you down!

From here the road is going to get bumpy. There will be doctors and surgeries. Medication and tests. I cant even get into detail, because something will always change. Things will never be the same, but with time and love, you will make it though. Remember to have fun with life. Even when it feels like you just want to let go. Don't be so serious. Laugh with the boys more than you scold them. Love David like every day with him could be your last. Have emotions. Let them out. Cry, it will always make you feel better. Have hope. Never lose it.

There is so much more I would love to tell you, but there is so much you need to see and learn for yourself. Believe in yourself. You got this!

This post was written as part of NHBPM - 30 health posts 30 days: http://bit.ly/vU0g9J

The reality is...

2011-11-02T13:29:00.001-05:00

"Your blog is being turned into a TV show! Congrats – you’ve earned it. In fact, you get to co-write it. Write about the TV show based on your life or blog."

I cant tell you how many times we have said "Damn, if only we had our own reality TV
show!" Seriously, I don't think people would know what hit them. And I have no idea what it would be named. Of course if it was about my blog then I would just call the show Hope Whispers.

I think something along the line of a reality/documentary would be right. Following me from the ultrasound that threw up the red flag till long after my transplant. It would be nice for others to see, what I go though. To see me struggle the few months after Alex was born, when I was feeling like I was barely hanging on to my life and having to juggle being a new mom on top of parenting a toddler while my husband was busy working. To see me laying in bed all night going over the hundreds of what ifs. To watching me wake up after my surgery and get to finish living the life I set out to!

I think it would be nice to see it from the boys view too. I often wonder how my 6 year old views my liver disease. He has asked so many questions. Thought out questions. And has cried so many nights begging me not to die. He has little bouts of resentment because I am not able to spend time with him like we used to. I go out of my way to try and make him understand and know that I love him so very much.

And what about my marriage. Ever wonder what it is like to go from happily married to feeling like there is no way we could make this work. Watch as we both feel guilt over my illness and watch us find our way back to each other after we almost lose everything. We argued more in the first year of my diagnosis than we have in our whole 11 years together.

And you cant forget all the Dr appointments and scopes and surgeries. Watch me tear up because I hate sitting alone in the exam room. Hear my thoughts as I lay still in the MRI. Better yet, hear the MRI. Ive have been trying to explain to my family what it sounds like! Watch my pill count go from 1 to 4 to 10+.

I think we need more shows, movies and media that shine the spotlight on organ donation. It would be so nice to not only document my life, but others who are at every stage in transplant. From the hundreds of tests it takes just to get listed. To the waiting part of the journey. Just waiting to get sick enough to get better. To the struggle of staying alive and well after transplant. We are have our stories. Some of us are parents waiting, some of us are parents of a child waiting. All with different reasons for needing a transplant. All with different outcomes. People really need to see just how hard life can be on the list and how important it is for more people to sign up to be organ donors. To be heroes!

This post was written as part of NHBPM - 30 health posts 30 days: http://bit.ly/vU0g9J

Titles of my future book

2011-11-01T22:43:00.000-05:00

OK I just now sat down to go though my emails and so I didn't have much time to think these through. But here goes. Day one of NHBPM (National health blog post month)

5 titles of my future books

1. Hope Whispers. Everything was perfect. A loving husband and sweet little boy and one more on the way, life could not possible get any better. It wasn't quite what Kim had imagined her life would be like, but none the less she was living it and loving it. Until the day it was all pulled out from beneath her. On a routine ultrasound of her unborn child, Kim was told there was something wrong with her liver. Finding out later that she was going to need a liver transplant or she could die. How would she explain this to her children. Would her husband stick by her though the journey? All she could do was hang on to what little hope she had left and pray it would all be OK.

2. A liver friendly cook book. When I first found out I had liver disease and was going to need to severely adjust my diet, I did what anyone else would do. I looked high and low for recipes that would not only be liver friendly but husband and kid approved to. I took recipes that we loved, adjusted a few things and still had great tasting, filling and family friendly meals.

3.Intoxicated Youth. No one besides us ever really knew what went on behind closed doors. The late night arguments and fights. The screaming and the bottles breaking. Hiding in the closets with our hands over the ears of the little ones. Crying ourselves to sleep at night and praying that tomorrow things would change. Tomorrow never came.

4.I love you more. This is a story of a little boys who finds out that his mom is sick. He begs her please to get better. He cries "I love you mom" and she always replies " I love you more"

5.My life for yours. Finding peace after organ donation. This would be a collection of stories and letters about people who have received the gift of life though organ donation. What is it like to know that someone had to die in order for you to live? What is it like to meet the family of your donor? How can we get more people to understand organ donation and sign up to be organ donors too?

This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J

Happy Halloween

2011-11-01T09:34:00.000-05:00

Happy Halloween from the 3 of us. David had to work, which was a huge bummer, but I won't even go there. We had a wonderful night. Even if we left home at 7 and didn't get home till 9. And still only went to maybe 10 houses tops. After we stopped at Grandma and Grandpas, the boys decided we should just hang out there.

Was it just me or did October just sneak up and pass me bye? Our costumes were not at all planned and we ended up using ones we already had. And considering we only walked down two blocks I'm sorta glad we didn't go and buy new ones. Next year I have to be more prepared. I'm thinking I might coordinate our costumes next year. We will see.

Our pumpkins were a big hit. Its funny because people were so amazed by them but I don see very many out. Don't people carve pumpkins anymore? Its my favorite part of Halloween There were some amazing costumes. One girl had made a hello kitty head. It was awesome. Lots of pirates and princesses. And lots of girls looking like hoochies. I have to admit, I think we dressed up like that one year. Embarrassing! Two things I did learn this year is 1, I'm glad I don't have girls and 2, I will have to pick something more kid friendly. While my guys didn't mind, I made my friends baby cry and one little girl said I was el coo cooi and refused to come up the drive way till I turned around!

I hope you all had a wonderful Halloween! I know we did. Bring it on November!!

E is for Emotions. And Eddie!

2011-10-26T10:24:00.000-05:00

I absouluty love this song. Although when it is the first song you listen to in the morning it is bound to make you cry and bring on emotions that you didnt know were so close to the surface. Not that I did that, because that would make my whole day seem all sad and emotional. Then Id feel like listening to pearl jam all morning and then other songs will come on that remind of things Id rather like to forget and Ill get even more emotional. Yeah, thats what would happen. If I did that. So I'm just going to stop right here!

Wisdom? More like pain in the...

2011-10-20T22:46:00.000-05:00

***Warning. I may or may not be whining this whole update***

I hate whining, but seriously! Today I called my hematologist because I am going to be having my wisdom teeth taken out. The reason I have to have the procedure cleared though him is because he is the keeper of my blood and things like my gums being cut open need to given the go ahead by him.

When I had the mass taken out of my neck, my liver biopsy and the countless endoscopies I have had all I've had to do was stop taking my blood thinners for a few days and then resume afterwards. Silly me, though it would be that simple this time around. NOT! As soon as I heard the words "your going to have to go back" I knew what he was going to say...Lovenox. Yes, I was right. The dreaded twice daily injection.

Lovenox and I go way back. This is the result of my first injection way back in 2008 when I was just diagnosed. Its crazy to go back and read entries from back then. Looks like I will have to go back on the shots for a full week before I go in to do my wisdom teeth. And then can go back to taking my pills afterwards. That is as long as everything goes according to the plan. I have to call my Transplant nurse tomorrow and make sure my liver doctors are OK with it as well. Thankfully I have been very stable and haven't had any infections. But there's always a risk I could get one afterwards and I've been told that when your liver isn't working properly infections spread like wildfire. So, who knows what the clinic will add to this. I guess we wait and see. But I guess I've added band aids and more alcohol wipes to my grocery list. And I need to figure out how I am going to pay for the Lovenox. Hopefully its not still the couple hundreds dollars it was last time. Either way, the though of doing this again makes my legs hurt. Maybe this time Ill inject in my stomach? (Which is where they wanted me to do it last time while I was insanely pregnant). Doesn't sound any better does it? Maybe not. Anyone want to take a shot at me?

Week in the Life wrap up

2011-10-18T18:47:00.000-05:00

If you have been reading this last week you were probably overwhelmed by all the pictures of random pieces of my life. Halfway though I kept thinking, why in the world am I taking another picture of this or am I really going to share this photo with the whole world? And then I would hit post. This is me and my life. It was an eye opening week, that's for sure. I learned a lot about myself, my boys, my marriage and my lifestyle.

One major thing that stands out to me the most is how envious I can be of others. Don't get me wrong, I love my life and know that I have been blessed beyond words. Being a mom and wife is hard enough. But doing it and living with this liver disease or any illness is more than I can handle some days. I'm usually very good about not comparing my life to others. But during this week as while looking in to everyone lives, I couldn't help but realize all that we are missing out on. The spur of the moment trips to the park, to the ball fields and dance classes. I'm missing out on all these things. My boys are missing out on all these things. After my transplant I am going to have a lot of catching up to do! And that is fine by me.

What else...

Trying to get a photo with David in it is impossible. It must be where Alex gets his dislike of the camera from.

I need more photos of me doing things with the boys. And David. Actually a picture of all 4 of us would be nice!

I am really bad at sticking to my schedules and lists but really good at making them. A lot of it comes from being sick. Some days we eat at 5 and some days 6. Other days I don't make what I planned for dinner because I don't feel well. But the important part is we do eat right? And we can always eat healthier!

I need more one on one time with each of my guys. Not just David and I, but the boys on their own too. They are so different when the other one isn't around!

For a while there the family would tease me that I always had my camera in my hand or make comments that I'm not a real photographer so why have such a big camera. As much as I love the camera on my phone, I always always regret not having MY camera on me. I miss my baby!

Another thing I didn't realize I missed so much was music. But when I sit down to write I always have music. And this week I sat here so long that I actually got to really enjoy it. And it wasn't just the Mickey Mouse Clubhouse song either!

There is so much more. But Ill stop here. So many moments I look back now and think, man, I should have shot that! Next time! Yes there is so going to be a next time! I hope that those that stopped by will come back every now and then. I know I will be stopping by all the wonderful blogs I discovered this week! Thank Melissa for the adventure!!

A week in my life: The weekend

2011-10-17T08:26:00.000-05:00

OK I'm going to be honest and say that by Friday I felt like just saying 5 days was enough. My photos seem pretty boring and I didn't want to bore everyone with the random things we do all day. But then I started thinking about my 30 days photo challenge fail and decided even if the pictures I had were not the most amazing, I was going to finish all 7 days.

The only problem was after the 5K my body just about gave out on me. Just another sign that I need to pay better attention to it. After a week of only a few hours of sleep it all caught up to me. So this post is a little later than usual. And since most of the weekend was spend in bed, these photos are all edited though a program on my phone. I kinda feel like I'm cheating putting the two together but I'm a rebel like that :)

Saturday was the Vital Alliance Donate Life 5K. Its not very often you find the whole house up at 6am. But that day I walked out of my room and my brother had every ones coffee cups filled and ready to go! The Sunrise that morning was amazing. I guess my eyes were still foggy because out of 5 shots, this one was the best.

When we got there we made our way though the crowd and got our bags! Bright green. Did you know that green is the awareness color for Organ Donation? Some might not think its the prettiest color but I love these little bags. And we wear them when we go on bike rides. They are are great bag/reflectors!

I didn't even think to take pictures during the walk. Last year I had a ton. David pushed the stroller and I snapped away. This year I pushed and talked. My sister walked with me this year. As well as a new friend. Well I shouldn't say new because we have been chatting between Twitter, FB and our blogs for I think almost 2 years now. I was a little star struck. If you guys don't know Stacy, you are missing out. I have never met anyone with a heart as big as hers. Stop by Kids Stuff World and you will see what I'm talking about! Stacy and 2 of her little ones walked with us. After the walk we joined Anthony and the rest of the group at the park for a little play time! The best part of the walk was the end when Alex got out of the stroller and ran to the finish line. There was a line of cheerleaders cheering him on! He loved it!

David reminded me that last year I said we were going to run the race. One of these days we will! But I was just thankful to still be healthy enough to finish it! David had to work late the night before so he got to stay and play on the playground, so I reminded him that he has no room to talk ;-) And look I even got a picture of him. I love this man!

On the walk back we stopped to check out the lily pads and take a picture. Anthony wasn't in the best of moods and was in tears by the time we got back to the car, but Id like to think it was a really nice morning. Being on the transplant list and living with liver disease or any for that matter, is a lonely road. But being surrounded by hundreds of others who know what I'm going thought or have gone though it already reminds me that I am not alone! Family time together, supporting me and Donate Life is just what I needed!

5 mins into the ride and everyone was asleep. And since you can really see it in the picture, I got a video:)

When we got home, everyone was starving and exhausted. We all went straight to our beds and stayed there till the middle of the afternoon!

We did manage to go grocery shopping and got our painting pumpkins. Anthony is excited to have his cousin Ace over to paint pumpkins with him! I think it was the first night I was the first one in the house to go to bed! I was that tired.

Sunday morning was brought to me by Peets Coffee and some magazine browsing. Mom mad a huge breakfast. Which after such a tiring Saturday we all very much appreciated!

The rest of the day was spend lying around. Melisa had orientation for her new job! Way to go Bug. I'm so excited for her! Before I knew it we were gathered around the table having dinner. Nothing to fancy. Tuna subs and fries. But I was to tired to make a big dinner. I know it doesn't show here but Alex was thrilled to get to eat at the big table. Guess its time to get a booster seat. Until now the boys have enjoyed eating together at their table. They like it there. And the floor in the kitchen is more kid friendly so I never pushed it.

Thank you all for sticking with me this week. I have learned a lot though this project. I have done days in the life, but never a whole week. I will post later about all the things I found our lives later. But for now I just have to say thank you to Melissa over at Adveturoo for putting this together! It was so much fun!

A week in my life: Friday

2011-10-14T23:53:00.001-05:00

OH Fridays how I love you. So much that I let my battery on my phone die and forget my p&s, so that I have no pictures of today. Well I have 2. Then again everything about today was out of the norm anyways. See!

Dropped Ant off at school. Early for once.
Came home and didn't go back to sleep.
David was awake at 8 even though he was working late.
We were actually out of the house by 10am!
Dropped of a movie at blockbuster and didn't get another one.
Paid the car early.
Went to McDonalds and only got the Happy Meal Anthony wanted for lunch.
David made an appearance at the school. Hes always working!
I was surprised with a "grown up" lunch at my fav Thai place.
David offered to take me to Best Buy to check out the phones. Yes, I am available for upgrade and he isn't.
Came home, took ONLY 10 min nap.
Picked up Anthony.
Got home, tried to take another nap, instead took trip to Academy.
Got home, tried to nap again, but was sucked in to the internet.
Forgot to eat dinner.
Took my meds on time.
Watched TV and got a foot massage!
Started cleaning out the van.
Took a break to clean up vomit
Laundry
Back to finish cleaning
Watched an show online that was cut off earlier thanks to football
Back to laundry
And now I'm here, speeding though a run down of my day. With no photos. Well wait, I said I have 2 so here ya go.

I haven't been in Davids car in forever. Its low to the ground, the music is loud and the leather is cold but he is looking good driving his car. Much more his type than the mini van.

And I did get a shot of some....LADY who was going down the wrong lane and then tried swerve in front of us. She almost smacked right into a school bus.

I did find another photo, but its of my brother, wearing my sisters shorts and tank. I don't think he would appreciate it very much if I shared, so i figured Id let you get a mental pictures instead....nice Jeff!

I'll be walking tomorrow morning and Ill be sure to have some sort of camera on me, so hopefully tomorrow I will have more to share! Have a wonderful weekend!!

**This was my Friday post for A week in my life. Stop by Adventuroo and see what else is going on!**

A week in my life: Thursday

2011-10-14T09:13:00.000-05:00

Its Thursday and day 4 of A week in my life. Be sure to stop by Adventuroo and see what others were up to today! You know you want to!

5:45 BEEP BEEP BEEP. I really hate the sound of my alarm!

6:00 Time to wake the beast and pray hes in a good mood! YAY! He smiles!

6:30 Mmmmm coffee. But before I can even have a sip, Anthony announces he wants to ride the bus. That should go by in 15 mins. And that he wants a quesadilla for breakfast. I fly around like a crazy woman. Pouring coffee, getting him dressed, making his food, getting myself dressed, shoes, teeth and hair brushed, bag packed and we are out the door.

6:49 Made it to the bus stop! Just in time for Ant to tell me he should have just got dropped off to school because its still so dark and creepy out! Um I dont think so son! Youre getting on that bus!

I talked to a mom at the bus stop. She was telling me about a house that was broken in to. The house...is right behind me! I walked home freaked out and paranoid. Looking behind me every other second!

7:15 Coffee and some catching up with the DVR. SVU. * like*

9:00 Drop Alex off with Grandma and its off to the hospital for an appointment with my Hematologist.

9:15 Trying to find parking in the hospital parking lot is a joke.

9:20 Find a spot. Mom said shes going to wait in the car. I finish plucking my eyebrows. I dont know why, but the only time I ever do my eyebrows is in the car...

9:37 I check in and am now $35 less ~~richer~~ poorer than I was a min ago. Next year it goes up to $40.

9:45 They called me back and we go though the routine. Weight? No comment. But I dont have a fever and my BP is 115/58. Not to bad!

9:56 Still waiting on the Dr. *dislike*

10:03 Dr H comes in. My INR is 2.7 and I dont have to change my doses! He goes though my notes from the transplant clinic. Checks my lungs, my stomach, my ankles.

1:11 All done and making my next appointment. Yes $35 for 8 mins of chit chat and a rubdown. Next year our copay goes up to $40. I got a hug from my lab tech who I wont see anymore since the Dr is moving to a new office. I told the recptionist I will be sure to still stop in and say hello when Im there. It was kind of sad. They were there for me when I was pregnant and scared. They prayed with me when things were so unknown. They know my boys and always ask how they are doing. Awesome bunch of ladies.

11:00 we are home and after a quick lunch I plop down infront of the computer to catch up on a few things.

A little Jack to set the mood

12:39 Bills and menu planning all in one.

Checked the time to Saturdays 5K. Live Life than Give Life. Are you an organ donor?

Because there are 112,415 waiting for a second chance

Once pacific islander at Methodist with Budd Chiari and a MELD of 11-18. THATS ME!

2:30 Pick up Alex from Grandmas and walk to the bus stop to get Ant. I love that the InLaws are only 2 blocks away. Of course Alex fell asleep on the way home. Time for homework and snack.

3:42 My body had just about given up on me so I crawled into bed with the laptop and watched mondays Terra Nova that I missed thanks to some baseball game! Im a sucker for dinosaurs.

This is when things get a little cloudy. I had to take some meds for my pain, so I have no idea what time everything happened. We had dinner. I gave the boys thier baths. And got back in bed. Anthony read his story in bed with me. Its funny how fast he can fall asleep after swearing hes not tired! I caught up on "New Girl" and some other shows on Hulu. Then Alex came to bed and was bouncing off the walls thanks to a late nap.

I think it was about 11 when David got home. I warmed up his dinner and was back in bed by 12.

A week in my life: Wednesday

2011-10-12T23:23:00.000-05:00

Today is day 3 in A week in my life over at Adventuroo. And it is brought to you courtesy of my ever so handy camera phone! Yes it was a lazy day today. But its speech day for the little one and so that means, its a day full of cleaning, playtime and thats about it.

But Im determined to stick to it. Tomorrow I will try to be a bit more creative. I didn't keep tabs on the times. BUT, there were smiles this morning.

Slept in again!

Apples and Hot chocolate for breakfast!

Thinking hes so cool with his coffee mug! Its the little things :)

After we got back from dropping Ant off at school everyone one was still sleeping so I messed around with the new Facebook timeline. Cute right!!

Hugs and kisses and hes out the door. Again. Bye Daddy!

Refill!

Looks whos awake. Say hello Bug and Mom! I have a house full of family right now. So be prepared for random faces.

I enjoyed a little Mickey time. I think the dog was pretty into it too!

After dinner we had a mad cowboy running around. And yes, hes wearing his boots too. With a basketball outfit. Hes classy like that!

We had spy training before Speech. Uncle Jeff sorta made it though. Auntie did a front flip and so she wins even if she hit the wall and pulled on the the ~~streamers~~ lasers down.

For Speech we played sink or float! Alex is a water baby so anything that he can splash and get wet is good times. And the dog loves water just as much, clearly.

Time to go get Anthony. He must have had a good day because he even held my hand when we walked home! YAY!

Hey look! My little man was the only one in the class who got a 100% on his math test! Way to go buddy. He was so proud of himself. And he earned a nice shiny quarter for his money jar!

After a walk the boys were actually still getting along. Posing for one last picture with funny hair! Guess its time to hit up the barber!

So that was our day. Nice and calm. Only one fight and a ton of smiles! This mom is gonna crawl in to bed now and pass out!

A week im my life: Tuesday

2011-10-12T10:30:00.000-05:00

Its day 2 at Adventuroo and here is our second day of A week in my life!

I woke up early today thinking it would be nice to make Ant something warm for breakfast. Instead of his usual pick of cereal. Things didnt go as planned...

6:00 Rolling out of bed after hitting snooze for the last 15 mins. Ugh. Every night I swear I will go to bed earlier. And every night its past 12 before I'm crawling into bed.

6:10 Time to wake up the boy. Why is my nose running? PAUSE for bloody nose courtesy of blood thinners. Stuff tissue up nostril and continue!

6:15 Anthony is not excited to see me this morning. As a matter of fact he spent the next 10 mins telling me that I woke him up to early and should have let him sleep

6:25 He finally realized that his plate was right in front of him. Of course he was upset because he wanted cereal not eggs.

6:33 Poor kid is just not in the mood this morning. He was mad because I didn't give him jammies last night and now he is cold. But if you see last nights post, he dressed himself. Long pants and long shirt. He must have gotten hot and stripped down in his sleep! At this point I'm at the end of my morning limit and tell him that he is more than welcome to wake himself up and make his own breakfast from now on. He quietly finished his breakfast!

6:43 I am craving some oats so I cut up some apples to go with it. Apples make everything better!

6:53 Look who finally finished eating and getting dressed...Hes going to hate me one day for sharing this. He is not a morning person by any means. Maybe some cartoons will help?

7:14 Oh my apples! Forgot about them! Got the apples done. Lunch packed and we are out the door at
7:21.

7:27 The sunrise was amazing. One of the best things about not being able to drive is that I get to notice all the little things!

7:30 Anthony was in a much better mood by the time we got to school. He always is! I watched as he walked up to the door. And was reminded of just how tiny he was when the bigger kids held the doors open for him!

7:44 I get home and settle in. Remember my oats that I started an hour ago! Almost forgot about them. Nothing like warm, thick oatmeal and Pinterest!

8:00 Better check on the little one and make sure D is awake! This kid can sleep! There is actually 2 blankets under him and then my lava lava on top. Both boys sleep with my lava lavas. I think some people call them sarongs!? Anyways. They are nice and light, I think that's why the boys covet them! Back to the computer to finish yesterdays post.

9:05 Alex is up and crying for cereal. I know I just said he can sleep, but boy can he eat too!

9:35 Time to say goodbye to Daddy! And that means its time to get to work. Alex wants to watch Mickey Mouse. Whats new.

9:50 I finally finished my post. Hit publish. And as much as I just feel like going back to bed, I know its not gonna happen. I miss morning naps.

10:12 My kitchen is a mess. Why are there cookbooks and papers everywhere? I was going to put them back where they belong but ...

What the heck happened in here? The other day I was talking to David about buying a set of holiday dishes but I had no space for them. He then proceeded to show me that my kitchen cabinets have more junk than dishes in them. There is no time like now to get it done! And maybe with the extra space I can go shopping!

10:23 Finally finished cleaning out the cupboard and clearing off the counter tops. Alex was playing so quietly so I figured I would get some more online things done.

11:24 I sent out emails, posted on Facebook and twitter and took a picture too! I am doing the Donate Life 5K again this year and there are 4 now 3 days left to sponsor me and help me raise money for the cause! Considering I am on the liver transplant list myself, this is one of the few ways I try to give back ever year. Last year I raised 500. At this point I had 40 and by the end of the day I was up to almost 200 I think!

11:31 Does anyone with an Ipad have this game? Its actually my bothers, but Alex loves this game. Its like patty cake with a giraffe. Its so hard and addicting. I laid on the couch for a hour just trying to make this darn thing happy. But I'm not quite fast enough! Sad panda giraffe.

12:24 Gone are the days of walking out the door with no make up on. Dark circles and red patches have turned me into a girl! Nothing wrong with it, but most people who know me know that I'm not a make up type of girl. Or I wasn't anyways. The night before, David came home and said I looked different. Refreshed. As soon as I washed my face for bed, he figured out my trick!

1:01Time to go to the hospital for my labs. Yes this kid is giddy with excitement. He loves the hospital.

1:06 To bad he passed 5 mins into the drive. And slept though the whole thing!

1:28 Hello needle. I am so used to this by now. My sister thinks its funny that everyone in the office knows me and asks about the boys! I think its funny she was able to take this pic and not pass out!

1:31 Stopped by the courtyard. Isnt it beautiful!

2:17 Back home and me being the genius that I am decided Id take a quick nap...

2:40 Time to go get Ant from the bus stop. I always take him a water. This time I switched it up and put it in the mailbox when I check the mail. Then let him "check the mail". He was confused...very confused. But it lightened the mood!

3:38 Homework time. Anthony gets frustrated with me because I keep erasing and asking him to write better. Afterwards its snack time! Alex wakes up just in time for some Nutella toast!

4:27 Time to burn off some of that energy. I spotted a caterpillar in the grass and that turned in to the most awesome part of the day. The boys were so intrigued by this thing. And its so cute to hear them say it. What is it? A caddipitter, tapidipper, callipidder? Alex settles for worm, easier to say! And Anthony make it a home in his old bucket.

4:45 The caterpillar was tired so they left him alone to play so B Ball. That lasted a whole 5 mins before it was back to check on their new pet. Which them tuned ugly and they were sent to time out!

5:10 I love how fast they forgive each other! Back to being best buds in no time.

5:21 My bother Jeff has so graciously decided to cook dinner this week, but us ladies helped him out. Melisa and I were in charge of potatoes! While mom cooked the chicken. Wait who made dinner ;-)

5:58 Cinderella!!! The floor needed a good scrub.

6:37 Alex and Anthony enjoyed dinner. And Chico laid in wait for someone to drop something! Alex is rocking those boots! True cowboy right there!

7:15 Running a few mins behind, but that doesn't mean bath time cant be fun and fast! Bubbles were everywhere.

8:00 Bedtime and I was drained. Anthony read his reading homework and then I read to him. I thew some clothes in the washer and upload to photos for todays post. The fun part was getting them off my camera, the little camera and my phone!

9:13 Oops, I forgot my meds! AGAIN! Better late than never!

10:00 And I forgot to put the clothes in the dryer. Ok done. I had to check my watch because David would be home soon and I hate to have the dryer running when he is ready to go to bed.

10:50 I hear the garage door as soon as I open the dry to take the clothes out. Thew them on the couch real quick. I meant to fold them right away but ended up making David something to eat. And catch up with him.

11:23 Thank you Bug for folding thoes clothes for me! Sisters rock :)

Crawled into bed a little after midnight. Closed my eyes. The last thing I remember is hearing the shower shut off.

*Wow there are a lot more pictures than I planned on*

A week in my life: Monday

2011-10-11T09:57:00.000-05:00

I'm participating in Adventuroo's "A Week in My Life" project. Just in case you ever wondered what I really do all day. And maybe prove to some that I do actually do things ~~while you're at work David~~ during the day. Or not...

Today was a holiday so I slept in. Hubs was getting ready to leave for work at 9 so I got up. Of course Ant was happy to get to see him for once on a Monday morning. Usually he is either gone or still asleep when we leave for school. We both begged David to make his breakfast. What? It was just a bowl of cereal. Nothing to demanding for a man that is already running late because I needed more hugs and forgot to make his lunch. I was not at all prepared for the day and thats never a good sign.

9:44 Breakfast is served. We have morning meds with a side of apples and peanut butter. And water to wash it all down. The pink pill is my Xifaxan, paired with my daily dose of lactulose will help me get rid of the toxins that cause my encephalopathy. And the white pill is my probiotic. Ill spare you the side effects, but lets just say for the next few hours, I was busy.

By 12 I was feeling better. My meds had for the most part run their course. And I had some lunch. The boys were outside with the rest of the family. Riding bikes and playing games. I decided to clean out my junk drawers in attempt to be somewhat productive.

1-3 pm was spent going though all the things I had just pulled out of the drawers. I found the little folder/calendar that I had while I was pregnant with Alex. Going though all the months and remembering each and every appointment was a trip. There was a happy face next to the day we had our big ultrasound. The day the Dr told us I was carrying another boy and that while he was perfect, she suspected I had a problem with my liver. Oh the memories. I found this tucked in the front pocket. A list of names, their meanings and US pics! We didn't use any of the names.

And to set the mood we have a little Wyclec on Pandora. The song. Call 911...

Next thing I know its 3pm and Alex is still going out side. For a second I though about just letting him play and put him to bed early. But then I remembered we did that last night and it was a nightmare! So nap time it is. I think I was more tired that he was.

3:34

3:45

I know I told my sister to wake me up in a hour. I know she came in and got Alex when he woke up. And I know I woke up at least twice because I could feel her staring at me. And I know it was 6 when I finally got out of bed. Days like this I am beyond thankful to have a house full of people. Dinner was already cooking.

After dinner it was in the bath and then time to get ready for bed. Figured I would save the bath time fun for another day. So here is bedtime!

8:17Ant is ready for bed. Dressed himself and everything ;-)

Alex had different plans.

8:35 and we are still reading. We have read this book a thousand times and each time he asks a thousand questions. And every time he laughs at the silly words. And at me when I fumble them.

This is the last pic of the day. The next few hours were spent trying to watch TV but everything was half recorded thanks to some baseball game. No Terra Nova. So we figured we would watch CSI but that was the last half of The Good Wife and only the first 20 mins of CSI. But guess what did record all the way. Hawaii 5-0 so the night wasn't a total bust.

Stay tuned to tomorrow and see what goes on. Hopefully it will be more than a bunch of sleepy pics!

Let me off

2011-10-10T14:35:00.000-05:00

I woke up one day on a roller coaster, I never planned on getting on. But I'm here, trying to hold on. The curves when you least expect it. The amazing highs and the gut wrenching lows. And now, a free fall. Right into reality. You see, the past few weeks I have been so busy and that I forgot I was even sick. Its like I just turned myself off and did what needed to be done. Nothing more, maybe a little less, but enough to get though the days. I ignored the pain and fatigue. Forgot to eat and take my medication on time. It was like I was carefree and healthy. And then the floor dropped our from underneath me. Again.

So what changed? What triggers these ups and downs? Its always somthing small. Like saturday night, watching David enjoy his nice cold beer and thinking, damn that looks good. Im no lush. But sometimes a beer sounds so good. I get online ans hear about people curled up on the couch with a glass of wine and Im just curled up in pain. Jealous? Bitter? Just a little.

There I was laying in bed. Trying to get comfortable. And trying to decide if I should take Ant to bed or not. I miss the days when I felt strong. When I was working I tossed around 50lb bags of supplies like nothing. And now I was dreading carrying all 36lb of him. The fact that I had to take a breather half way though the hall really ticked me off. And it wasn't the fact that his knee was pushing right into my gut, it was the fact that I can no longer just pick up my kid. Yes I know he is 6 years old. But still. If I am this week now, what is it going to be like later on down the road?

In the morning, after a whole night of worriying over what I am going to tekll the boys when I do get the callI just didnt even have it in my to smile when David told me he loved me. Wait, what the hell am I going to tell the boys. And with that, here I am again. Awake in the middle of the night, trying to make sence of the mess that is my life!

To be continued...

Pictures of Pumpkins Past

2011-10-07T14:02:00.001-05:00

Its October again! That means I am on the hunt for this years pumpkin faces. Every year is the same thing. I am undecided until a few mins before I start cutting. This one or that. Happy or sad. Funny or scary? Painting pumpkins is SO much easier. But the boys, ok I, love watching jack o lanters flicker. Speaking of flickering, I was on Flickr and though I would check out all our pumpkins from the past few years.

2007 The snakey face

2008 We had Jack and the Cat

2009 3 Random faces.

2010 Yes there are 7 here and another one out of sight.

This one was my favorite

Anthony's favorite

And so that brings us to 2011. Im willing to bet $20 Alex asks for a Mickey Mouse or Angry Bird pumpkin. Who knows what Anthony will want. All I know is I need to invest in a heavy duty pumpkin carving set. I went though 3 last year! And being our first Halloween in our first house...we are going to have to go all out. Pumpkins for everyone!! What kind of faces are you carving this year? What other Halloween traditions do you have? Id love to do something different this year.

Wordless Wednesday: My monkey

2011-09-28T08:16:00.000-05:00

Refresh and a Birthday wish

2011-09-27T09:55:00.000-05:00

Have you ever sat staring at your screen hitting refresh? I feel like I have been doing that so often lately. To my life. Just hitting refresh every day and praying something would change. This morning things were different. I feel like there is less weight on my shoulders. I feel a calm in my heart. And I feel relaxed. I don't know what changed. But I'm not about to sit around and wait for the other shoe to drop. I'm going to make the most of it while it lasts. And pray it lasts for a good while!

Today is also my little brothers Birthday! Happy Birthday Jeff. My birthday wish for you is that you feel the same calm as I do. I know sometimes you feel like there is a roadblock at every corner you take in life, but I promise to always be here to help you push though them and move forward! Remember that! I love you!

I'm off to enjoy this blessing! I hope you are all having a great start to the week. Thank You for your love and support!

Letting go of normal

2011-09-23T09:48:00.000-05:00

Why am I so afraid of this? Last night was day one of no night time nursing for Alex. And after he was asleep, which took a whole 5 mins, I laid there watching him. So many thoughts ran though my head. I had planned on self weaning, but at 2 and a half he shows no signs on giving it up. And before anyone throws in the whole OMG hes 2, get over it. Our breast were made to nourish and comfort our babies! But now that I say that, is it horrible of me to take away that comfort. That is the only reason he nurses still. He usually cant fall asleep without it. I'm so torn here. One part of me feels really guilty for taking away what he finds comfort it. And I think about our time together, I will really miss that bond. On the other side, Id love to be able to go to bed and not have a kid climb up my shirt in the middle of the night. And part of me feels like hes ready to be independent. And yes a tiny little part of me is tired of hearing all the remarks about how hes to old, or that's why hes so attached and so on.

I go back and I read this post about our journey and I wonder if I should really stop. It was such a struggle just to get started. Gave up halfway though, then rallied and have been nursing champs. When I think of not nursing anymore I feel like I'm taking away the one thing I can give him right now. Comfort. I'm worried that I will get sicker and as he grows he will forget the time we spent together and will only see the sick me. And that is something I will always worry about. I still feel guilty letting my oldest see me sick. But eventually there will come a time with there is no hiding it. Maybe none of this is making sense. Not a lot does these days.

I know as I continue to get sicker, I will no longer be able to nurse. I have tests that need to be done, but because of the amount of radiation, since I am breastfeeding, I am not willing to do. I know that there will only be more medications to clear, and more procedures done and eventually more hospital time. So do I stop now and prepare for that, or enjoy what time we have now? I think what is holding me back the most is that in my crazy life, between the Drs and pills and needles and sickness, breastfeeding has always been the most normal and natural thing about my life for the last 2 years. But I know it cant be forever.

Since writing this, Alex woke up had cereal, watched a little Mickey Mouse and is now playing away. When I changed his diaper I asked him if he wanted to nurse he said no. I asked him if he was a big boy now and said with a smile. "Yesh Mom! Me big boy" So I guess we will see how it goes. Next stop big boy underwear!! I know I have shared it before, but its moments like this that I will always remember.

Today is the first day of fall yall. Have a wonderful Friday and a great weekend!

Liver Clinic Update

2011-09-21T10:01:00.000-05:00

Is it wierd that I am freaking out because I dont have to go back for 5 months? The Dr who I saw was not my ~~favorite~~ regular Dr. So things were a bit different. It seems like more and more the nurses are doing what doctors used to. First I saw a nurse who took my vitals. BP105/50. Temp 99.5. Weight....yeah not going there. Answered a hundred and one questions. And then came a Dr who I had never seen before. Who had me explain my answers to the questions asked by the nurse. Then came the dreaded exam. He looked at my chest for any spider veins. Checked my hands for swelling and flapping. My eyes for any yellowing. And then my belly. Seriously, my liver and spleen are so large and swollen that anywhere you push its going to be tender. Yes here and yes there. I thought I was going to break my toes from curling them so bad. He said he could feel that my spleen was quite big as well. Fun times I tell you. Then it was off for blood work. Only 6 vials this time, thank God!

By the time we got home, I took some med and went to bed. Im truly grateful to have my family here. Uncle Jeff was in charge of homework and reading. Aunty Bug picked the boys up and fed them and gave them a bath. Bubu supervised! And I woke up just in time to say goodnight to Ant. Talk about a quick day. Of course I was up till 3am and up at 6 but I am feel well rested so no complaints here!

So unless anything changes, I think besides monthly blood work and a hematologist appointment, I'm done with Drs till the end of the year. Oh and a trip to my primary for a flu shot as soon as I schedule that. But all easy stuff. And with family here and next months Donate Life walk, then the holidays, the rest of the year is going to fly bye. Which reminds me! I have so many fun holiday activities planned, thanks to Pinterest, my new love. I should share them with you all. Wishing you all a fabulous rest of the week!

Drained

2011-09-13T18:00:00.000-05:00

Today has been yet another one of those days. I got up, did our usual morning routine. And one the walk home I kept telling myself that I needed to do something productive today. But when I got home I think David was thinking one step ahead of me. He told me to go back to bed. So I did. Well, first I played on the phone until he insisted a second time :) Didn't wake up till 11.

I did manage to do one thing today and that was a little laundry. One load. And the rest of the day was spent sitting on my butt in front of the computer. My pain is different today. Hopefully that's not to bad of a thing. But I've been hiding away in my room so that a big deal wouldn't be made about it. I think its just a combination of stress and sickness and frustration. I just want to curl up in a ball and be left alone for a day. I am also feeling a little worried that I have not had one donation yet to my Vital Alliance Walk. I know money is tight for everyone, so I am just not going to sweat it!

Since that's not going to happen, I am off to get the boys fed, in the bath and off to bed. I hope everyone had a great weekend. Much love!

Good old Kwaj days

2011-09-12T10:01:00.002-05:00

If you were a kid on kwaj in the 90's, you know what I'm talking about. The door was always open, Dad was always cooking something and on the weekends, you had to be there. We were know as "Schilling Kids" But after 39 years, 6 kids and moving though 5 houses, Dad is finally leaving Kwaj. And I still cant wrap my head around it.

I'm trying to convince myself that the memories are enough. Playing manhunt in new housing. Us island kids scaling the palm trees so the new kids would never find us. The parties at the Rodrigues house were always full of fun and the best music and food. Lunchtime at the Yuk Club. I remember riding though the alleys as fast as we could so we could be the firs in line. All for a greasy cheeseburger and fries. Almost as good as the chicken sandwiches and cheese fries Betty would make for us at the Beach Snack Bar. Christmas time growing up was one of a kind. I remember waiting for Santa to get off the plane and walking behind the firetruck as he threw us candy. The tree lighting ceremony was beyond magical. Summer fun was FUN! Days spent at Aunt Vi and Uncle Hals. Tubing with the Whites and having Tim take my bottoms with him when he fell off and not realize it until after I waved all proudly to the 20 some people waving at me from the pier. The school dances back in the day were fun to crash. The Teen Center was cool, but the Gazebo was cooler. And almost as cool as the Cheese! Oh and the superswim. Am I the only one that remembers this? I think we were raising money for Somalia. But spending the night at the pool and swimming for 2 days and nights was so much fun. Then there were sports. Mr Sherril was the most awesome coach ever. Bigej trips. I'm talking about school ones. Dad making us the 5 foot subs that became a must have. Musubi too. Then there were the other boat trips. Like the one where I got pushed off the boat in Bigej pass. Thought I was going to die for sure. The girls will remember our Superbowl party. Best one ever. Or dancing to dads 50's music. The summer we caddied at the Golf course was way to much fun. Having chili dogs afterwards in the country club. Smoking under the tree behind the gear locker. Storm Zelda and setting up class rooms in the CRC. Boogie boarding in the ditches by bunker hill. Field days. Shaving cream socials and the haunted house. Fishing with Dad and watching him reel in the biggest marlin I have ever seen to this day. Making lures at the boathouse at Uncle Tonys Shack. The laser disk club in the old teen center by the family pool. Collecting gecko eggs and hatching them in jars at home. The countless Sunday BBQ's at the beach. Snorkeling on Saturdays in Marine Bio. The fort in the tree by the last street in new housing. Secret Beach. The hideout in the Jungle by DCCB. And the bushes by glass beach. The turtle pond and the lifeguard shack. The Emu and fish frys at the Pacific club. Going to the bakery to see our moms and get donuts. And then they brought baskin robbins out and that blue ice cream.

I could go on and on. As much as I complained growing up, I could give anything just to lay on the beach one more time. Or to go on one more boat trip. I miss the crystal clear water the most. So peaceful. Sometimes I used to go out to the end of the jetty in the middle of the night and just sit. Once I swam out the the ski dock and was to freaked out by the phosphorescence that were glowing in my trail behind me to swim back till sunrise when I could see again. Like I said, so many memories. Who knew such a small place could make such a big impression. I would love to take the boys back one day. I guess I should have found a way to do it before now.

OK enough of this. Back to the present. Dad and Sandy will be going to San Diego. And Im looking forward to having him on the same timezone as me. And hopefully being able to see him more than once a year for a few days. Now we will be able to Skype since it didn't work on Kwaj. And they can stream videos of the boys with out having to buffer for a whole day. See Kwaj has its cons too! It will always be home. How am I more sad about Dad leaving than I was when I left?

On a positive note...

2011-09-04T13:22:00.001-05:00

It would be a bit of an exaggeration if I said I have never been so tired of going to the hospital. But that is how I feel right now. My blood has been such a pain lately but I'm hoping Ill be set for another month now. First it was to high and so we lowered my blood thinners. Only to have it bottom out and have to change my doses each week. But Dr. H called and looks like I'm back to therapeutic for now. After a month and a half of weekly checks, I'm free, for a few weeks anyways.

I was talking to day yesterday and he asked if I could feel when my blood is off. For me, a low INR (thick blood) is usually accompanied with lots of sleeping and just all around stiffness. My body just feels like its filled with concrete. When my INR is high (thin blood) I tend to get lots of headaches and dizzy spells so horrible I get nauseous. I'm not sure which one is better. If my blood is thick, I run the risk of throwing another clot. A blood clot in my liver is what landed me in this position. I could develop a clot in my lungs or even worse my brain and have a stroke. But with thin blood I run the risk of bleeding out. So everyday task become extremely dangerous. I could slice my hand cooking for washing dishes. And If I hit my head, I could develop a brain bleed. If I were to get into an accident, I could easily have internal bleeding. So either way, I'm pretty much screwed. That is why it is so important for me to make sure I am at a safe level.

It is so easy to over look the blood disorder that started this whole thing. I have what is called Prothrombin Gene Mutation G20210A. It causes my blood to clot easily. I have had it my whole life. It is most likely the cause of my 2 miscarriages and the reason Anthony was premature. Luckily I am not a smoker, since smoking increases the risk of clotting. But I did take birth control pills, which could have played a part in it all. I hate that there is not telling how long I have had the clot in my liver. When I was pregnant with Anthony i was told I had a third kidney, but when I got pregnant with Alex my spleen was pushed all the way down in my pelvis so that explains that. So maybe I had it then, who knows.

In a way I am very thankful that the clot developed in my liver and not in my brain or lungs. Yes the thought of having a liver transplant sounds scary, but at least I have a chance. And I am well enough to enjoy what time I have now. when I think of all the things I could not have today if I hadn't made it this far, its easy to see this as a blessing. That sounds weird but the truth is, as bad as this is going to be is nothing compared to what it could have been.

Smile with me?!

2011-08-24T16:14:00.001-05:00

I haven't been around much. Truth is, I've been feeling so negative, so I have been trying to lay low. I'm sure its just stress, but I don't have the time or energy to write it all out. With summer ending, school starting, a husband working 13-15 hours a day, trying to keep in touch with family and friends and my sanity for that matter. Its not working for me. But all I can do is keep trying. Most days I just feel like a zombie. Or a puppet. Like I just do what I need to do or am asked to do. Emotions are barely there. Most are just regret and feeling like I am a burden. I'm trying so hard to keep my head up and keep the smile on my face, but it just gets harder and harder.

Growing up, I smiled though all that was going on. And now that I finally have everything I have ever wanted and needed, life throws this stupid liver disease in to the mix. And now I'm back to square one. So frustrating. Just waiting for the other shoe to drop. See now this is exactly why I've been away. Such a downer. I remember telling myself when I was little how bad I just wanted to tell someone the who truth. How sad and scared I was. But at the same time I was so afraid to show people just how bad I hurt. I guess somethings never change.

I'm so glad I have so many photos to remember the moments that made me smile. I think my memory is part of it all. Days get cloudier and disappear. I take my Xifaxan religiously. My Lactulose, not so much. But then again, if you have ever taken it, I'm sure you understand! There used to be a time where I could block the bad and only remember the good. But that seems to have changed. I need reminders of all that I have to be thankful and happy for. And I hate that I cant remember these. But like I said, thank GOD for pictures!

Here are some random few that always make me smile :-)

Crashing in to 1st Grade

2011-08-23T12:42:00.003-05:00

Yesterday it was official. Summer is over and we are beginning a new chapter. Anthony's first day of First Grade. David and I dropped him off and he went straight in. Of course we were the last to get there, so there was no picture time. I can always get that later. I told the teacher he wanted to ride the bus home. And we left. All I could think about all day was how fast he is growing up.

When we got home, things went just like always. Alex played, David left for work and I tried to stay awake! Lunch then naps for both of us. We woke up just in time to get dressed and head down to the bus stop. Alex was peeking around the corner waiting for the big yellow bus. Here it comes! Kids get off, but no Anthony. I asked where he was and the bus driver tells me " The little guy got off at the last stop with his friends" To which I replied, He doesn't have any friends. Ok I may have said it in a rude and snotty way. But my baby was on the other end of the street with who knows who. I went running. Alex in one arm, camera swinging on the other. Phone to my ear calling Melisa to go look for him. Then David to freak him out too! He was walking down the street with some kids and saw me. No sweat of his back he was just walking along. Go figure.

The rest of the day went almost as planned. Snack, no homework, and play time. Then came dinner, which went fairly smooth. Everything was calming down until he decided to fly out of the bathtub. Crack his head on the toilet and chest on the side of the tub. Then falling down in a ball before I could scoop him up. Rushed over to grandmas and then off to the ER! We got there at 8 and didn't go back till midnight. Ant slept through his exam and woke up in the middle of his xrays. And yes that went about as awful as you can imagine. I think we got home around 2. I think.

Today hes fine, sore, but nothing is broken. Praise the Lord! He is still upset about missing school. But hes going back tomorrow. I had planned out a whole post about how awesome his day was. But I think we will have a redo! So for now. Here we are before all the drama. Looking somewhat awake and excited.

I hope you all had smooth and wonderful first days back. Here is to a better tomorrow!

Donate Life 5K

2011-08-18T22:46:00.002-05:00

It is that time again. Well not yet. But on October 15th we will be walking in this years Vital Alliance Donate Life 5K. I'm so excited. Maybe even more so than last year. It was our first time ever doing anything like that so we were so clueless. This year will be much better. Last year I thought it was all about how fast you could get though the walk, only to find out it was so much more fun to chit chat along the way. And Alex was loving all the dogs that were right at stroller level!

There were so many people out there. Some were in huge groups. Some were walking alone. There were hats, shirts and whole cheering sections for people. Some in memory of donors, some for loved ones who died waiting for an organ. Some had had transplants themselves and others like me were still on the waiting list. So many people there to support one cause. Donate Life. I cant wait to be a part of it again this year. Its nice to know I am not alone in this!

This year will be very different. A few of my twitter friends will be joining me. Of course Melisa will be right there with me. And hopefully the boys too. I will have to register Anthony if he wants to go. No biggie. I'm so excited to get out and show my support for something that is literally going to save my life. And give me the chance to do many more years of this!

So here it is. My fundraising page. I set a goal this year to make more than I did last year. Everyone that donated last year was so generous and I'm hoping that this year I will be able to raise as much if not more. So what do you think? Will I cross one more goal of this years bucket list? Please feel free to share this page with everyone and anyone. And thank you all for the amazing support. I couldn't have come this far without you all! Much love!

http://www.firstgiving.com/fundraiser/kimbelry-munoz/2011vitalalliancedonateliferunwalk

And if you will be in town, there is no where else you should be! So stop by Vital Alliance and register for the 14th Annual Vital Alliance Donate Life 5K Run/Walk.

Stop for Baby Elephants

2011-08-15T11:42:00.001-05:00

I have a hundred and one things I need to be doing, but all I want to do is sit here and go though the rest of the photos from our trip last weekend. We all had a blast. Didn't do much, but that's fine by me! Just wanted to share a quick picture and then Ill be back with some more again...whenever I get to sit down again! I hope you all had a wonderful weekend.

How cute is this? Look at the little fuzz on its back. Almost the cutest thing I saw all day. OK the whole trip was full of cuteness. But Ill be back to share that later!!

Making memories

2011-08-12T00:12:00.000-05:00

When I first got excited about taking another family trip, I started thinking. It hasn't been that long since our trip to Austin. Why not stay home and just enjoy David's time off at home?o But when things started falling into place it seemed like it was meant to be. So here we go. The truth is, we might as well get away as much as we can now, while I am still able to. Who knows if this will be the last trip as a family we can take for a while. Or ever for that matter. You never know. And its something I'm very afraid of. Leaving this earth and leaving my boys without a ton of amazing memories.

I want them to look back and remember jumping on hotel beds. Playing I spy on our road trips. Slugbug. Trips to new and exciting places. And I want them to remember me right there with them. Happy, laughing and healthy. Like me, they love animals. So the first stop will be the zoo. We love the San Antonio Zoo, but any chance to see more animals is always fun! I love their faces when we make Texas shaped waffles at the hotel. Or the way Anthony always says Thank you for taking him to a hotel again. That boy loves to travel. I wish we could go to far off places. I wish I could take them home and show them where I grew up. Hopefully someday. But for now, we never go farther than 4 hours away. That way if I were to get my call, I could get back in time. Organs don't wait. And neither to moments like the ones we are about to make. So here is to making the most of the time I have now.

Much love!

Another year. Another wish.

2011-08-04T12:25:00.000-05:00

If someone would have told me years ago that I would be this thankful to be turning 29 tomorrow, I would have laughed and made some smart ass remark about how that's almost 30! But the truth is, I'm blessed to have made it this far. I'm married to a wonderful man, and our boys are healthy and full of life. We just bought our first home. My friends and family are the best.

But then three years ago, just two months after my 26th birthday I was diagnosed with Budd Chiari Syndrome. A very rare liver disease and also with a blood disorder that make me more likely to get blood clots. I was put on blood thinners and was told that I would need to have a liver transplant. I was 18 weeks pregnant at the time.

My whole world was turned upside down. I had so many questions. Scared doesn't even come close to how I felt. I was beyond terrified. The big life that I had dreamt about, the life I had all planned out was being pulled right out from underneath me. I slowly lost the energy to play with Anthony. I hated that part and he hated it more. And then there was medication. Every morning and every night I sat in my bathroom. Trying to convince myself to get get over it and give myself those dreadful lovenox shots. But at least now I'm not afraid of needles anymore. But I put on my smile and stood strong.

My pregnancy was very carefully monitored. There were months where I had Drs. appointments all 30 days. I got to see Alex every Friday when I had my ultrasounds and stress tests. Aside from all the worry, everything went fairly smooth. On January 12th, we celebrated the birth of our second son. He was perfect. As we all celebrated, deep down I remember being so afraid. I had just been given a miracle. And I was going to need another.

On May 25th 2010 one more name was added to the UNOS transplant list. Mine. It became real to me then. This was really happening. I need a liver transplant. So I waited. And more than a year later, I'm still waiting. The option of a living donor is not an option for me. The damage is not only to my liver, but the vein that carries blood to my heart. And obviously they cant take that from someone who is still alive. So why am I still waiting? Because sadly there are not enough registered organ donors in the United States.

Every day an average of 18 people die while awaiting organ transplants because of a critical shortage of donors. Today there are 111,737 men, women and children now awaiting heart, kidney, liver, lung and pancreas transplants. When you register to be an organ, eye and tissue donor you sign up to be a hero. Through the miracle of transplant you could save up to 8 people. And enhance the lives of up to 50 more. What reason is there not to!?

We don't get to choose when our time is up. But we can choose to give life when ours are lost. Are you an organ donor? If not, please click on the Become a donor tab up top and register. It only takes a few minuets and could give someone a life time.

**I set a goal to get 5 people to sign up this year and I am at #4 right now. Could you be #5?**

And so I ran

2011-08-04T01:05:00.000-05:00

There is nothing like an anxiety attack in the middle of making dinner. Which you are already behind in doing because you cant seem to get though a day with out an afternoon nap. Even though you haven't done anything because your body has decided to betray you and go out and get some extremely rare liver disease. Yes that was me today.

I meant to get up at 5 and start dinner, but for the life of me couldn't keep my eyes open. Had to peel myself out of bed at 6 and even then I was thinking about making a quick dinner just so I could go back to sleep. But my chicken was all defrosted and ready to go. And I remembered Anthony telling me he wanted real chicken sandwiches for lunch and not the flat (sandwich meat) chicken. Everything was fine. And then it wasn't. Somewhere in between cutting the potatoes and basting the chicken, my mind went spinning and my heart went right along with it.

Now I have had anxiety attacks before. Always at night, when I'm lying in bed thinking about all the horrible things I am going to have to endure. Or thinking up all the what ifs! But never once have I felt like this during the middle of the day. Today was different. I was like a dark anxiety. It shook me to the core and I was getting scared. I couldn't breath and just wanted to curl in a ball and cry. It came out of nowhere. And I just wanted to run away. So I basted the chicken, reset the timer, put on my sneakers and went for a run. I have never ran like it did tonight. I've never been a runner. My body isn't built for running. Seriously, in high school when we would run for PE I would roller blade instead. Add bad knees into the equation and I'm dammed. I did it though, I just got on and ran. And yes, I took a few walking breaks, but that's allowed right? The best part of it all was that I didn't hurt. Not my abdomen anyways.

Tomorrow I will probably pay for it, but I'm just so excited to have ran. And ran more than I walked. So yay me. I've been walking/jogging for a while, but I've always gone with a program. Like the C25K on my phone or one of the presets on the treadmill. Not today. I didn't care about time or speed or how many calories I was burning. I knew I had 20 mins till the chicken needed to be basted again so I ran. And after I cooled off, I felt amazing. My mind was calm. My heartbeat settled. No anxiety. No fear. Amazing. I know its nothing super but a little over a mile in 18 mins is a record for me. Silly, maybe to some. I know some ladies that can run like the wind. Maybe someday....

I'm not the same. But I am HERE!

2011-07-30T11:46:00.000-05:00

When you're sick things change. I'm changing everyday. Last night we were talking about how I'm "slacking". I'm just not the same as I used to be, 5 years ago, 2 years ago or just yesterday. I have learned to adapt day by day. Each day brings new challenges and I need to be able to rise to it or decide to let it go. I can see why someone would say its slacking.

Discipline in this house has always been one of my greatest challenges. I used to be the ruler of the house. But the truth is, I'm tired of always being the mean one. Its bad enough these boys are going to have to deal with me being sick. I have enough guilt over that, I don't need the guilt of being a meanie too. I've tried though. Time outs. But these boys are stubborn as all heck and the crying and having to constantly take them back to time out, wears me down. Plus 5 mins after they are out they are back to it again anyways. Spanking is rare around here. Yelling needs to stop, I'm working on it. Sometimes its seems like the only way to get their attention is to raise my voice. I cant count the number of toys that went in the trash or how many times I have said "since you want to throw cars, go throw them in the trash" The other day it was their little plastic golf clubs. They sat there in the can all day. The boys would occasionally go look at them and shake their heads. But I took them out that night, cleaned them off and hid them for a while. After all, I don't have the money to be buying toys and tossing them. Is this so wrong? My kids are not bad kids. As dad says, they are boys! Yes at home they are a little wild and sometimes forget their manners. But I've come to accept this instead of constantly correcting and scolding them. They are 6 and 2. Children. My children.

Oh and guess what, I give in to them too. I do. When Anthony was little he had a horrible dairy allergy so his diet was very restricted. I never gave him candy. Watered down his juice and so on. With Alex things changed a little. Its funny to hear people gasp that I gave them cookies. Or another popsicle. But I guarantee you that if you were in my shoes, about to cry from all the pain, emotional from all the stress and just beyond tired, one more cookie is a very worthy trade for 5 more mins of silence. And yes I let them have soda, only when we go out to eat. I admit I have given in a little to much on the junk. But even still its not that much. That has to change for sure. I am the queen of 5 more mins. Because sometimes I'm really the one who needs a little extra time. Sometimes I even let them skip bath time and just play. Shoot me. Honestly, my liver biopsy hurt less that bathing these boys. The bending over kills me, so occasionally we skip it. Oh yeah, I'm quick to hand over my phone so they stay quite for a little longer and some days they watch way to much TV. Yup no mother of the year award here!

Everything is getting harder. And I'm having to make the choice of doing whats most important and letting the little things slide. Some days I don't have the energy to clean. Sometimes I just don't have the strength to take the trash out. Some nights I hurt to much to make a nice filling dinner and I make something packaged. But every morning I wake up and just want to lay in bed and be sick, but I get up. And try my best to be the person I need to be. I may be struggling, or slacking or just plain sucking at it. I know I'm not the same, but I am here dammit! I'm trying and some days I just wish that was enough.

For the record, I find it all a bit funny. Its hard sometimes to tell my emotions through the writing. I wrote this all with a smile, rolling my eyes the whole way. I know who I am and why I choose to do the things I do. I know my boys have a roof over their head, food in their bellies, clothes on their back and all the hugs and kisses they could ever ask for! I guess sometimes it gets frustrating and I have to get it out. So no hard feelings yeah!

Do I make you nervous

2011-07-27T02:04:00.000-05:00

We had our follow up with the pediatrician Monday. Anthony's ears are clear. Thank God. But it wasn't all good news. I guess it could be worse, but it wasn't the best either. See Anthony does these things...constantly clearing his throat and scrunching his nose. I figured they were from his sinus issues, but they were all clear too. When we talked about his attitudes and "energy" the Dr said she thinks it might just be a nervous tick. Most likely brought on by him worrying about me. We agreed that he is a very high energy and high strung kid. But really, could I be making my kid sick.

This is my baby! He's seen me at my best and sadly he's seen me at my worst. He remembers all the fun things we used to do. Before I became the sick mom. We both struggle with finding peace with my illness. It's brought out the worst in both of us. My sweet boy has turned into an angry little man and his mom turned into a no patience having meanie! It its only when we are home. And he only does his "ticks" when I'm around. After his Drs appointment the boys went to grandmas house, no ticks. As son as he got in the car to come home, he's clearing his throat. Words cannot describe the pain I feel over this. What have I done? How do I fix it? I have no clue, but I will fix it, I promised him that.

I will be sure to update as we hopefully make progress and is love any ideas you guys have. One thing I have started is Time In. When we are both frustrated we call time in and just sit together. Now when he's feeling overwhelmed or anxious I can actually help him calm down. David, being the manly man type was skeptical, but I've even heard him call it. Don't anyone tell him I said that either. All I care about is that it helps.

It's hard being a sick mom. It's hard being the sick wife. But what is it like being the sick moms son? Poor kids, I will not let this get the best of them. I would give my life for these boys. I'm going to live my life for them too!

Day 10: Childhood Memory

2011-07-25T22:02:00.001-05:00

You cant live on Kwaj with out riding a bike. Many memories all involve bikes. Many of them crashing...but hey, memories are memories.

Day 9: Someone I love

2011-07-24T21:44:00.001-05:00

Published with Blogger-droid v1.7.4

Day 8: A bad habit

2011-07-22T21:44:00.000-05:00

So many bad habits rolled up in one tiny little piece of metal. I live off this thing. It has my appointment schedules. My medication alarms. A hundred random reminders. It is also my connection to the outside world. So there is Twitter, Facebook, Emails and texting. I'm totally obsessed with the thing. But I do have to admit that I am able to put it down for periods of times and not shake and sweat. Anyways, sadly, I have passed this love down to the younger generation. But when you are in bed cringing in pain and the boys just want to play games, its easy to toss it over and keep them occupied for a little bit. Its my biggest regret. Its a bad habit shared by the whole family!

Me and my bad luck

2011-07-20T17:00:00.000-05:00

Today has been one of those days where everything that can go wrong will go wrong. And nothing makes sense either. My mind is running at a hundred miles and hour and its making me sick to my stomach. I feel like Alex. Trying so hard to talk but no one understands me. That may be a little over dramatic. Its more like people all of a sudden forgot that I am a smart ass and cant take a joke. Whatever. Deep Breath!

Someone was supposed to come out and install our patio fan this morning. Never showed up. Turns out he was having "family problems" and didn't call any of his clients back today. David called and was told they would send someone else out. And its now 4:30 and still no sign of him. Today was also day 2 of our shower remodel. The guys were here bright at early. A little after 8 and went straight to work. They had to run back to the office for something and came back to tell me that the walls for the shower are to short. So he is looking to find some in town and get back to work Friday. But they ordered new walls when they were in the office just in case. That would be a weeks wait. Granted, on our contract it was said the project would be started no later than 4 weeks after signing. And completed by 6 weeks. Yesterday was the start of week 7. Yeah!

My mind is running though so many thoughts right now. Its like bi polar ups and downs every minuet. It doesn't help that my body feels so run down. After almost 8 hours of sleep last night I still took a 2 hour nap this afternoon. I feel like my head is going to explode and my abdomen is so tender I have to sit up straight and proper. Thankfully the boys have been pretty good today. There was some fighting over electronics, but I don't even want to start on that.

Tomorrow I have a follow up with my hematologist. Nothing like paying a $35 copay just to be told I look great and to come back in a few weeks. My labs have all been good. I was supposed to get them redone again Monday, but forgot. I feel like I cant keep track of my appointments or anything for that matter anymore. They are written down in my phone and in my book with reminder emails, but it all goes in and right out. I'm trying so hard to stay focused and in charge of my mind but its seems to be doing its own thing. At least I have been able to see these changes happening. I'm watching myself get sicker and sicker and there is no stopping it. No matter how hard I try I will never be prepared for the road that lies ahead of me.

Woosah

2011-07-08T13:55:00.002-05:00

It wasn't until all was quiet in the house that I realized why yesterday was so rough. I sat down next to David in bed and realized just how bad I was hurting. Physically. It was like my liver was throbbing. And the light bulb went off. Pain = Temper. I guess its pretty easy to figure that out right. And I know I've probably said it before. It used to be that I would feel the pain and then my whole day would be horrible. But yesterday was backwards. I kept telling myself to breath. I didn't know why I was in such a rotten mood. Then when the dust settled the pain set in.

Have I really gotten to the point where I don't even recognize my pain anymore? Like its just part of life. Every morning I wake up and think to myself...yup, still hurts. But then I put it behind me and go about my day only to realize again at the end of the day just how bad the pain is. Most days I am just tender. But tender just doesn't fit into my life. With kids climbing on you. Picking them up. Putting them down. Rocking them. Hugging them. It all hurts. Only if I think about it. And I try not to because the though of not doing these things is insane. What is a life without hugs from your children. But being angry cant be an option for me anymore. I hate being that mom. My pain, is just that. My pain. Not theirs. I need to find a better way blow off some steam.

This morning, I got up and enjoyed a whole hour of silence. Started a movie, had 4 to many cups of coffee and just took it all in. Of course things went crazy as soon as the boys got up, but that's life for you. I keep telling myself to just suck it up already. I'm going to stop right here because believe it or not, I really do hate complaining. I have been so blessed and here I am wasting my time being bitter and angry.

Here is to hoping the rest of the day goes well. Lord help me. I am taking Alex to the Dr today. Anthony had to go yesterday. He has a major ear infection and Croup. Alex's cough is better today. But after crying for 4 hours last night that his knees hurt and feeling warm again this morning, I'm praying there is an explanation. We will see. TGIF!! Have a wonderful weekend.

Photo Challenge. Week 1

2011-07-07T15:22:00.024-05:00

My friend Jamee over at A New Kind of Normal was looking for some others to join her in a 30 day photo challenge. But then life got in the way and I got sidetracked. So in typical Kim fashion, Im a week behind. I promise to do better though. Not all these were taking on the right day, but now that Im caught up, I hope I can keep up!

So here is week 1.

1. Self Portrait. Or more like cheezy cell photo. I'm horrible at taking self photos. Promise the last one will be more creative.

2. What you wore today. There was no way I was taking a photo of me in a marshallese dress, so here is my ring. David got this for me after graduation when we were in Hawaii. Half of the black filling on the letters has fallen out but its still my most favorite ring. Kuuipo means Sweetheart in Hawaiian.

3. Clouds. Not gonna lie. I deleted the one photo I took of the clouds, so I thought Id just share an old one instead. This is from the Wildlife Ranch.

4. Something Green. Enough said!

5. From a high angle. Chico watching the birds out back.

6. From a low angle.

7. Fruit. The last piece in the house.

Help me pick my bling!!

2011-06-29T15:05:00.000-05:00

Ok I know I have been saying it forever, but I really need to get my new medical bracelet. But the hard part is picking which one I want. I do know I want something cute and not very bulky. But I also want to make sure it is easy enough to notice that it is a medical bracelet and not just a cute piece of jewelry. I found 2 that I like so far. One more girly that the other. Not sure if cute is very grown up of me. But that's how I would describe these two. There are a few that are more feminine with beads and stuff, but they are also pricier and look more like regular jewelry. So what do you think?

Is the heart chain to "cute"? I of course would change the heart charm to the one that says HOPE. And I think I prefer the medial emblem to be red!

Then there is this one, which is a little more chunky. I would pick Love, Hope and Dream as my messages. And maybe add the awareness ribbon charm just because I think its cute! It think this one is a little more grown up-ish....

I also have to figure out what goes on it. I'm guessing my name on the front. The Drs said to put Budd Chiari Syndrome on there. As well as that I am on blood thinners. But that leaves one line so I figured I should put the # of the liver clinic on there. Now that I see them side by side it think I like the second better. Might have just answered my own question. Unless anyone has any other styles I should look at!! Let me know!

And then there is my liver

2011-06-24T02:07:00.000-05:00

I had my 3 month follow up with the liver clinic Wednesday. And things are pretty much the same. Except this time David got to come with me and go in to work late. We even got to sit down and have lunch together afterwards. It been a while since I got to see him so much during the day. But I love him for working so hard for us.

So like I said things are pretty much the same. My liver is not completely failing but isn't working 100%. My kidneys are working great, so thats great news. In the words of my Dr. "You are a perfectly healthy 28 year old woman, except for your liver." My body is fighting to stay strong. My heart is doing the same. But how long can you put it off. Eventually my liver will get worse and stop working. I will turn yellow. Or maybe my kidneys will "scream" as the Dr calls it. Then what? Then I just keep waiting. To get sicker, and sicker. It will hurt more, Ill be more tired and more out of breath. Gee I cant wait.

I asked about the 3 nodules on my liver and he said that they are still there, but not something the MRI Dr felt was an issue right now. Thank You Jesus! I asked about my tenderness, as he was pushing on my stomach....yeah not fun. But to be expected when your liver is congested with blood. I asked him my liver was like a water balloon just waiting to explode. Its not. But any trauma to my abdomen could very well rupture either my liver or spleen, which is congested with blood too. We also got to talking about my Encephalopathy. No Driving, be alert of your body and its surroundings. The usual. He also took the time to reassure David and I that it was ok to get angry and frustrated. But to get it out and then apologize! He said he would consent to my putting my hand through the drywall, but since I'm on blood thinners we had better come up with something else!

All in all I have been feeling ok and that's enough for me right now. I have noticed a few changes which are all expected. Loss of appetite, shortness of breath, fatigue. Im fighting it all, but its getting harder. I've set some small exercise and diet goals to see if they will help. I'm hoping I can just keep pushing though it all. But knowing that in time, I just wont be able to do it, is killing me. I've noticed the Encephalopathy sneaking its way in my head. I cant remember songs that I have sang my whole life. And sometimes even with the music I cant sing along. Anthony will tell anyone that I am always forgetting things. As long as I don't forget him I think he will understand. That will never happen though!!

Its late and I'm loopy, so hopefully this makes sense. Much love!

Wordless Wednesday: Bloodsuckers

2011-06-22T17:43:00.000-05:00

Party of Five

2011-06-20T17:03:00.000-05:00

Things are always crazy around here. But they are about to get crazier. On Friday we become a family of five! No I'm not having a baby, but my first baby is moving in with us. And by first baby I mean my little sister. I'm excited, worried and happy all in one.

Actually right about now she should be at the airport leaving. Leaving behind the only home she has ever known. She is the baby of the family. A few days in Hawaii and then she will be all mine. Its like getting another kid, except one that I don't have to nurse or change diapers! I will however have to make sure she does all that she can to be a successful adult. So I guess I used her to practice my mommy skills when she was little and now I'm using her as a test run for when the boys are about to leave home! But most of all I'm just glad I will have someone to talk to! Like face to face. Don't get me wrong, I love you all, but to actually have someone here to see physically. I'm thrilled. Id I will have real conversations. I don't know if I can handle being asked to talk to the boys imaginary friend much longer.

She is also going to be my back up blogger. I asked her to take over and update the blog when I finally do go in for transplant or get sick and what not. And she will be my photographer too :) I want to see all the things I don't remember about it all. Anyways, I still have to clear out her room. Which is now being used as a Storage/ Junk room. 4 more days!!!

And just for fun, Here is us 11 years ago. This is the Bug I still see when I look at her. Even though just a few weeks ago she stood with out me, in her own cap and gown!

Happy Fathers Day

2011-06-20T01:51:00.001-05:00

I love days like today. That celebrate something so incredible. I mean really what is more amazing than being someone's daddy. Well besides being a momma;-)

This morning I told him happy fathers day and he said it back to me. I laid there for a second confused, trying to figure out if he was being sarcastic or making fun of me. (When my brother wished me Happy Mothers Day, I wished him the same!) But he said that I was the one who should get to celebrate because he is always working and not home very often. Ofcourse I told him he was crazy. That is one of the things I think make him an awesome dad. Everyday he gets up and goes to work. He's works himself sick, day in and day out. 8, 10 and sometimes 15 hours a day. What says Good Father better than a man who works hard provides for his family?! So yes, at times it feels like I'm a single mother at times, but my boys have never been without a Father. Anthony's card to David read: Dear Dad, Thank you for wurkin very hard so we can have muney. Happy Fathers day. Love Ant and Lex. On the other side was a drawing of the 3 of them holding hands! He knows his daddy loves him even if he's away at work a lot. The other thing about David that I absolutely love is that he shows his affection. He takes all the hugs and kisses with a smile. He never turns them down. And he never discourages them from doing what makes them happy. Our boys love to cook and cuddle. Hearing him tell our boys that he loves them makes me love him even more.

And let's not forget my Daddy! If you would have told me 12 years ago that he would be one of my greatest friends, I would have laughed till I cried. Little did I know it would be his calls that make the day all better! They do! We could talk for hours about weather, food, health, everything. The truth is, I love the man. I see now that there was a reason he was chosen to be my Father. It was a hard ride getting to that realization, but its been nice being here! I feel like we have only gotten closer this last year. We are bound by blood. Bad blood. Literally. I inherited my blood disorder from him. The one that led to the clot in my liver, that led to my needing a liver transplant. Am I angry at him for it...not a chance. I see now that it all happened for a reason. He just recently made it through his first cancer treatments. Last month he was given the all clear. Tumor free! It was heart wrenching to not be there with him. But now we have yet another thing to talk about. And when I tell him that I have that ball of fear in my gut, he understands. When I tell him I can't remember things, he doesn't judge me. And when I tell him I feel like just giving in, he can say he knows how I feel and I know its the truth. I believe all the trouble we had when I was growing up has led to this experience. No he's not perfect. Yes Id like for him to be, but I love him for who he is. I love you Dad! You were right. Now that I'm older and have a family of my own, I understand. Thank You for for everything!

So yeah. Now that I got that out, time for bed! Thank You God for giving me my father and my husband. Thank You for all the other good Daddys out there that love and provide for their children. Please help the lost fathers realize just how much they are needed and loved. And help them be better for their children! Amen

Published with Blogger-droid v1.7.1

Silver and Gold

2011-06-14T00:49:00.000-05:00

If you were to ask someone who has known me my whole life, they will probably tell you that I'm a good friend. I think so anyways. I have the best friends too! The kind I haven't talked to in months but can pick up right where we left off when we do talk. The kind that still remember the moments that made us laugh and don't dare to bring up the most embarrassing ones. Or maybe they do, but its all in good spirit. Old friends that are spread all over the world. So far away. But so easy to hold on to. That's the best thing about growing up on a tiny little island in the middle of the pacific ocean. Everyone knows everyone. You are friends with everyone. And that Kwaj Kid bond is one like no other! You don't make friends, you just are friends with everyone!

Making new friends here in Texas has been a struggle. I have met a few moms though school and then there is my old neighbor who I adore, but never get to see. But between living in someone elses house and being sick, I am afraid to let myself have friends. Because really who wants to hang out with a person who cant do a lot of the fun things and who needs to get a ride everywhere. Today I was talking to a friend whos son and Anthony are best buds. Well she lives about an hour out of town. Its pointless for her to drive all the way out here for a short play date. I know that. And even if we wanted to meet half way during the week, still impossible because I cant drive. But what can I do? I cant expect everyone to come to me... Hi want to be my friend and only hang out at my house? Unless you want to drive me and my kids around. Doesn't sound like a well balanced friendship. There are a few wonderful ladies who have offered to come take me out. But I feel like such a burden! I can feel myself avoiding people when what I really want is to meet people. I hate it!

Its just been one of those days. So much to do, but nothing can get done because not only am I not allowed to drive, but I don't know how to either. But I plan on learning this year so that its one less thing I have to do when I'm better! And I'm actually excited now. There are so many places I'm going to go. That's what I tell myself now. I'm sure once I can drive, staying home wont be so bad. You know how that goes, when someone says don't do something, all you want to do is that. Yeah, that's me right now! So frustrating.

Unhappy Fish

2011-06-06T17:41:00.000-05:00

I told you there would be tears. You would think after 4 hours in the pool, a yummy lunch (that he wanted to eat in the pool) and even a little sprite, the kid would be happy. No such luck. He lives for the water. And my neighbors probably wonder why every night around the same time there is all kinds of crying coming from the house. Dont worry people, its just my unhappy fish out of water.

He actually fell asleep crying for the pool. But as you can see, his cheeks were red enough. And there is always tomorrow. Swimming is our most favorite part of summer. Whats yours?

Summer time and the living is easy

2011-06-06T11:11:00.000-05:00

Its our first week of summer. Alex just got up. Yes its almost 11 in the morning. The boys are having a late breakfast while I finish up a few things here and then its time to rock. I had to check first with our water company to make sure were were allowed to have the pool and slip and slide running. We are on water restrictions around here. Its dry and hot! Seriously...its really really hot!

I knew summer would be challenging for me as I doing have half the energy I used to have. And if I over do it, I will be paying all week. So, I'm trying to plan a few things each day to do with the boys. I have a list that I'm working on, thanks to my new found lover, Pinterest! The only hard part is so many of the things I want to do but I cant, because of the whole no driving thing. Not that big of a deal because we will just save them for the weekend when Davids home! We are going to start the morning off with some swimming and beyblades. Yall know what beyblades are right? They are all the rage with the boys these days. In the end its all about getting some good quality time in with the littlest loves of my life:-)

I'm thinking lunch will be sandwiches and fruit kabobs served outside of course because no one ever wants to come in after there is water in the pool. These boys are like fish. Pool or tub, it doesn't matter. There is always tears when its time to get out. I might just have to join them in the water. Theres nothing better than sunshine and swimming. Its no Emon Beach, but it will do.

OK just felt like sharing our day while I had a few quiet moments. Now to finish up a few more things and get the day going! I hope everyone has a wonderful Monday! Much love!

Kindergarten: Then and now

2011-06-02T16:45:00.000-05:00

I cant believe my baby is going to first grade already. It seems like just yesterday we were watching The Backyardigans and playing with cars. We still play with cars though :)

Look how excited he was on the first day of school. I on the other hand was a nervous wreck. I know now that I don't give him enough credit. I have learned to let go....a little and just let him be. My once shy little man has become the social butterfly. And he won the brightest smile award too. I am so glad he was able to come out of his shell. Although when he told me he needed me to write my # on 20 cards so he could hand them out to his friends I was a little taken back! I need to make sure I make my mom cards this summer.

He hasnt changed much on the outside this year, but on the inside he is a whole new kid! He loves school, reading and most of all PE! We are going to be doing the book challenge this summer. I cant wait! Onward and forward to bigger and better things! YAY! I'm such a proud momma!

First Day of Kindergarten!

Last Day of Kindergarten!

Wordless Wednesday: Texas State Capital

2011-06-01T01:20:00.000-05:00

Weekend Trip

2011-05-31T18:46:00.004-05:00

One of the things I am most grateful for is the energy and healthy I have right now. Its not the best, but it could be so much worse. I always wonder when it will be gone. How bad it will be before it gets better. But all I can do is make the most of each day.

So last week when I was in the middle of my fundraising freak out, David suggested a weekend trip to Austin. Hes been there for work only and the boys and I have never been, so we pack up Saturday morning and took off. Thanks to rewards points we got a decent hotel room, check in an set out to explore. And I think I fell in love. What is it about Austin that is so chill. We parked at on of the many parks. And walked down a few blocks to the Capital Building which was beautiful. As was the lawn, which I think was the boys favorite part. After scolding the boys about walking on the grass, David pointed out that everyone was doing it. People had blankets down and were just hanging out. And there were squirrels everywhere. Alex must have chased everyone of them. Anthony stuck to rolling down the hills. And of course after an hour of exploring both boys were beyond worn out and grumpy so we called it a night. The next day we pretty much spent at the park. The first one was packed so we found another one and boy was it perfect. The boys had the whole playground to themselves. And they had a splash pad. A little water sprinkler park that was a huge hit with my two water lovers.

It was just what I needed. Even though the boys were not on their best behavior. The fighting over who got to push the elevator buttons was far outweighed by their giggles as the rolled and flipped down the grass. Or Anthony frozen because he got charged by a little squirrel. Good times. Good memories. All though, I think its about time for a mom and dad getaway next :-)

Tears

2011-05-27T19:42:00.001-05:00

"Tears are words the heart can't express”

Its not news that I need a new liver. I have know for 3 years now. And this week marked my first whole year of being listed on the liver transplant list. When people find out they always tell me that its amazing that I'm still smiling or ask how I can say that with out bursting in to tears. If I don't laugh, I will cry. And I hate crying. I can count the number of times I have cried over being sick on one hand. Never a major breakdown. Until today.

I have had three years to soak it all in. To accept the changes and come to terms with being "sick". I though I had done it all. But this morning, I was filling out an application for the National Transplant Assistance Fund. Its an organization that helps people like me who are waiting for or have had transplants raise money. Wait, who is having a liver transplant? Oh crap, its me...how could I forget. I didn't. But all of a sudden it hit me. My life is nothing like I had planned. I am a 28 year old wife and mother who needs a liver transplant. How did this happen. I know how it happened, but it was like I was just finding out all over again. Except this time with tears...lots and lots of tears.

Such a roller coaster of emotions. And all I can do is breathe through the tears. Dry my eyes and keep moving forward. There is no avoiding it. So I am going to hit send on the application and pray that my "community" will be willing to help me. And I also need to commit to helping my community as a way to say thank you back. Brainstorming. Beats thinking about having my insides ripped out and replaced. Seriously, have you seen the scar from a liver transplant. I will have to get someone to share a picture of their scar on here for me. Ooh I should do an interview :)

I seem to be back to my silly self, so I'm off to enjoy the rest of the day with the boys. Thinking about going on an adventure tomorrow. I could use a little vacation. Especially after a day like this! Thank You all for your prayers and encouragement. It means the world to me. And if you got this far, God bless you for putting up with my rambling. Promise to be back with something positive and happy! Promise!!

Wordless Wednesday: Little feet

2011-05-25T09:02:00.002-05:00

One Year

2011-05-24T23:24:00.000-05:00

One year has passed. One year I have waited. One year. I have been on the UNOS transplant list for a whole year. Really? I cant believe it. Emotions are over flowing. My mind is running a hundred "what ifs" and "whens". Its hard to explain really.

The hardest part about this journey is the not knowing. I have been stable the whole time. Never any major setbacks. Like clockwork. I get my MRI and ultrasounds. I have my yearly endoscopies. And while Portal Hypertension and ascites have been brought up, they have not had to be addressed just yet. I mix and drink my morning meds and every night my alarm goes of and I take the rest of them. All pretty stable. But. I never know what tomorrow will bring. If there will be a tomorrow.

Every few months, Anthony brings a bug home from school. Starts with a cough, then fever joins. Then Alex gets it...then David. I must have a very good guardian angle, because every time, it passes on me. I may get a sore throat, but never anything more. Knock on wood. But something as simple as a cold, could bring me down. I was told to report any fever over 100. See with my liver failing to do its job and filtering out all the toxins and other bad stuff, something so simple could turn in to something much bigger. Every time I get a stronger pain, I wonder if time is running out. When I look in the mirror at my bloodshot tired eyes, I pray for no yellow. I dream about getting sick. I can feel my body getting sick. But still they say I'm stable.

I feel grateful to have made it this far so well. I feel sad for all the people who have waited longer. I am relieved to hear stories about friends who are doing great after their transplants and my heart aches for the few that are still sick after theirs. I feel guilty for being listed when there are others who so desperately need help. Somedays I feel like I could conquer the world and other days I wonder why me. I'm frustrated that there is such a shortage of donors and I'm embarrassed that I never though much of it until I needed one.

What have I learned from waiting? I have learned that I need to put myself first. If taking my medication makes me sick to my stomach, the I will have to schedule my appointments for later in the day when the effects have passed. I am learning to say no. I am trying to not be so hard on myself for not being able to do things I used to be able to do. Ive learned to trust my instincts and to know my body better. Its not easy, but there is no other choice. This is my life. And its not going to get any easier. Ive learned to accept that, even if it took a whole year.

Who knows how much longer the wait will be. But Ill be here, waiting. However long it takes. Fighting. Living.

There are 111,344 people waiting for a life saving transplant as of today 12:14am tonight. Are you a donor? 90% of Americans say they support donation, but only 30% know the essential steps to take to be a donor. Stop by Donate Life America and register in your state! And if you do, let me know. One of my year goals is to get 5 people to register and I need 4 more :)

Focus

2011-05-23T13:55:00.000-05:00

My mind has been stressed to the max and when I came across this picture I remembered what I really needed to be focused on. These are the little loves of my life. They give me a reason to wake up every morning and everything I do is for them. I think God gave me them to keep me on my toes. At least when they are acting up that's what I tell myself. They sure know how to push my buttons, but they also know when Momma needs a hug or a flash of their beautiful smiles. I love my boys! They are what really matters :)

Stress Sucks

2011-05-23T00:28:00.000-05:00

So much going on, so little time to let it all out. My mind has been a blur this past week. Im ready to get back to the normal craziness, but worried as well. It just seems like sometimes I could very possibly die...of stress. I mean, its bad enough that Im on the liver transplant list. Whats worse is that its all silly things. Well most of it is. Things that I shouldn't be and have never been so stressed about. But now all of a sudden, they are bringing me down. Not a good feeling.

I am trying to find a positive for every negative. Seems to help. For example, I am going to miss my baby sisters graduation. Its insane how upset I am over this. You would think she was my child. Well, she pretty much is. There is a bond there, that is unbreakable. Stronger that just being my little sister. She is one of my very best friends and I am so proud of her for making it this far. I love you bug! I made her promise that she will never again walk down an isle without me! And the positive of it all, is that once shes graduated, shes going to be living here with me. That is a positive right? I'm joking! We are all looking forward to having here here! Cant wait!

Then there is my husband. Who worked more overtime than regular time last week. And did it all while he was sick! God I love him. He was pretty much gone all the time. And then one night, Anthony asked me if Daddy still lived at home. Talk about heartbreaking. I think it hit hard with David. The positive...a whole week of vacation. He got to take Ant to and from school. He was home when the boys got up and when they went to bed. We ate as a family. We were a family. No, we are a family!

There is so much more. Mom is off who knows where. But she said she will be here next. Leon is still in Iraq but will be home soon. And the best news of the month! Dad is done with his radiation. Thank GOD! That was the biggest relief. So good to hear good news. Still have a friend who just had surgery. One who just got his new liver and a ton of friends still waiting for their transplants. But all this transplant talk could get me sidetracked. Ill save it for my next entry.

So much more to get out, but going to stop here. Lunches are made, dishes are cleaned, boys are sleeping soundly. Time to cuddle up with the Mr and enjoy having him home when I fall asleep! Sweet Dreams!

Love, Mom

2011-05-08T15:47:00.001-05:00

Dear Anthony and Alexander,

Today is Mothers Day. It's supposed to be a day to celebrate me, but I'd more rather celebrate you. Because being your mom is what makes me special. It's what I live for, its what keeps me strong and it is the most awesome job in the whole entire world.

Anthony, five years ago I remember waking up with a smile. You were still in my belly. I could not wait to meet you. I made you a promise that I would love you forever. That I was going to be the best mom I could be and that I would always be there for you if you needed anything. I know I haven't always kept my promise. Being your mom is most definitely a challenge, but it's one I will always keep fighting. You get your indecisiveness from me. We never know what we want. You also get your stubbornness from me too. Yeah, sorry about that. Just like in our favorite book, I will always love you. Always. I promise. I like to look back at pictures and videos of you when you were little and I am blown away at the boy you are today. You are kind and loving. And you kinda love to push it, but that fire inside of you is what makes you, you. Never give up on anything you want. I am always telling you to keep trying. You can do anything you put your mind to. The other day you asked me what I wanted you to be when you grow up and I told you it was up to you. Whatever you choose to do, you will be great! I love you more than words could ever explain. I hope someday you understand that.

Alexander, if there could only be one word to explain you, if would be hope. When I found out you were growing inside of me I was so happy I cried. I had given up hope of having another baby or a sibling for your big brother. The day we found out you were a healthy baby boy, we also found out that Momma was very sick. I remember being so afraid. I didn't want anything to happen to either one of us. I wanted to have many more years with you but nothing is promised in life. I remember feeling so alone and sad. One night I was praying to God for more time. I prayed that he kept you safe. And kept me safe. I prayed that if it was my time to go, he could give me just a little more time with you, your brother and Daddy. All that day you were so active in my belly, but when I was done praying you calmed down. And I knew everything was going to be ok. You gave me my hope back. I don't know how I can ever make that up to you. But I will never stop trying! You are such a sweet little boy. You know what you want. And you also know that a flash of your perfect smile can get you almost anything you want. Your eyes do most of the talking for you. You have such expressive eyes. I'm looking forward to watching you become your own person. While I hope you learn a few things from me in life, I have already learn so much from you. Thank you Alex for giving me hope! I will love you always!

Boys, I want you both to know that you guys are the most important things to me. Everything I do, is for you. Every breath I breath is for you. Family is the most important thing we have. Always remember that. You two won't always agree, and there are bound to be some differences, but that's ok. At the end of the day you guys are brothers. Cherish that. Always be there for eachother. Protect one another. Never let pride get between the love. Always see the good in eachother. Live life to the fullest, and each day as its the last. Believe in miracles. I did, and now I have you! I am so blessed to be you your mom. Thank you for giving me a reason to celebrate, not only today, but everyday! And remember, I'll always love you!

Love,
Mom

Published with Blogger-droid v1.6.8

A week in

2011-05-03T00:25:00.000-05:00

OK I promise this is the last "oh I love my new house" post. We have survived a whole week here now and everyone is accounted for and the house is still standing. There is still a lot of stuff over at the other place, but we haven't missed anything. I'm so close to just donating whatever is left! The boys have 2 toy boxes full of toys they haven't even noticed aren't here. Or ones that there is just no spot for here. David has a ton of old clothes to get rid of and I have bins of maternity clothes that I will not be needing anymore. Then There are the 2 extra strollers, and the tons of outdoor things they have. Ugh. I get tired just thinking about it all!

The bad luck did strike pretty bad this month. We bought brand new appliances even though we were advised by everyone not to. But the reason we did. Everything breaks on us. The washer has already broken twice and we just got a replacement for our damaged TV console today. The MRI machine shut down half way though my last round of scans. And add no computer for me and that should tell you, my luck...sucks! Plus my blood is all out of whack again this month. But I keep telling myself that it could be so much worse. To bad I didn't come with a lifetime warranty. My overall health is still stable, so at least I got that going for me!

I still feel pretty bummed about missing out on Donate Life Month, but I know I can make up for it. My computer died on me, so now I'm stuck with Davids laptop. But, it works. So I'm going to get a few things off my shoulders this week. Mostly liver things. Maybe a little house related ;-) Maybe. But for now I need to take my butt to bed. Tomorrow is Speech. And Alex will be up early just waiting for his Mrs. Debbie to show up and play.

Back to the bottom

2011-04-28T18:13:00.000-05:00

I'm coming up on my 1 year mark on the transplant list. From the outside it seems like it was a breeze. But on the inside I can feel the storm brewing. I know this is just the calm before the storm. Like back in FL when we knew there was a hurricane coming and everyone was at the store getting all their supplies. Every one was smiling and playing nice, but if you looked closer you could see the fear in their eyes. I put on my happy face. I do what I have to do. I live my life. All while one little thing could turn it all upside down.

I had my hematologist appointment last week. My INR is at a record low of 1.2. And that's after a few days of being back on 10mg. So now I am back up to my highest dose of 12 mg alternating with 10mg. Hopefully this will help bring it up. The low INR makes my low MELD score make sense. Right according to OPTN its <10, so I'm back to the bottom of the totem pole. Not the greatest news, but I know it could be worse.

I kind of like it down here. After all, I should be happy to not be so sick...right? I am still "stable" and all my other organs are doing good too. I am so blessed to have this time with my family. I'm alive and living at home as comfortably as I can. Sure beats being in the hospital. Each day praying the Drs find my perfect liver. But I also know that someday that will be me. And I am so afraid of that day. So for now I am just going to smile and be thankful for the health I have today. Today I am alive and that is worth celebrating.

Here is to living life. Tonight hug your family and freinds. Tell them that you love them and how much they mean to you. Because tomorrow isnt promised. Life is a gift. Live it then give it!