Changing it up

OK well I was bored and decided to change the look of the blog up a bit.  Not quite what I had pictured in my head but it will do for now.  This is all I could do during the little mans 15 min nap and while my oldest was distracted by cartoons. 

Today wasn't the worst of days.  I got to play a bit on the actual computer, usually I'm online though my phone.  But a fussy 1 year old and a sassy 5 year old, don't leave much room for me time.  As I'm typing, the older one is pulling the baby around in the laundry basket.  They sure know how to have fun!  A little creativity and imagination go a LONG way with these two!  I really need to make more of the days.  I know what I want to do, but it seems like the whole universe is fighting me.  When I finally have the energy, the boys are in no mood.  And when everyone is ready to go, I can barely pull myself together.  I'm just so ready to get us all on the same page.

One more week till vacation.  My parents and little sister will be here for two whole weeks.  And I cant wait! I'm looking forward to seeing my mom.  I really hope that being here with us will help her.  Is been way to long since I have seen her last.  She will be seeing Alex for the first time.  And my Dad will be here too.  God am I looking forward to cooking with him.  When I was younger I remember rolling my eyes when he made me cut the vegetables and would talk about cooking.  Now I wish he was closer so I could soak it all in.  I'm cant wait to whip up some liver friendly meals with him.  And last but not least is Bug.  My baby sister. Words cannot express how much I love this kid.  Well shes not really a kid anymore.  Shes a beautiful young woman and I see so much of myself in her.  Don't know if that is a good or bad thing.  Growing up, my little brother and sister were what kept me going.  And now even though I have 2 little boys of my own, I still worry about those two like they are my own.  I just wish I could be there for them more.  Jeff and Bug if you read this, you better not be crying or worrying.  Everything will be fine.  I know this to be true.  I am a better person because of the two of you. 

I have no idea where this post was going, so I'm just gonna call it.  Here's to hoping that the week goes by fast and vacation goes as smooth as I can only hope it can.  I hope you are all having a good week so far.  Much love.

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Feeling Blue

The weekend got off to a really rough start. I'm just hoping that this funk I'm in goes away, because I hate myself like this.

I had my disability hearing Friday morning. It wasn't AS bad as I thought it would be. Honestly, I don't remember much that was said. The judge was upset with the results of my Psych exam. He kept saying it was ridiculous and so far off. But to be honest it probably is spot on. The Judge like everyone else looked at me and said I did not look like a person with the score the Psych gave me. Don't judge Judge! Not a book by its cover or a person by their smiles.

After court we took the boys to the park. We had the place to ourselves. Probably because we were the only dummies out in the heat! David played a little Basketball. Ant rode his bike and Alex chased birds. And I chased them all...with my camera;). Ill share the pics once I get them up loaded!

Later that dad I got a call from my moms boyfriend telling me my Jimma (grandpa) was not doing to well. By the time I had called the rest of the family, I got another call that he had passed away. It happened so fast. I didn't even get to say good bye. I hadn't seen him in almost 3 years. And even if we spoke different languages, the love was always there. Love is the same in every language. I was in bed crying last night when all of a sudden Bubu face came so cleary to my mind. She passed away many years ago and I had almost forgotten what she looked like. But last night I saw her and my heart was at ease. I could hear her laughing. I could see her smiling. They are together again...forever. And forever in our hearts.

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Week 4

Am I crazy to be counting the weeks?  I count the days too, but figured week 4 sounded better than day 30.  I'm not sure why I'm obsessing over how many days and weeks its been.  Waiting for a liver or any organ is hard.  I'm both anxious and nervous.  Excited and yet scared. 
One of my transplant Buddies, Anna, over at Our Transplant Journey, has been on the liver list for 5 months now.  She is only 12 years old and her MELD is 32. Much higher than mine.  I pray she gets her liver soon.

So what does that mean for me?  It mean that this might be a long wait.  Unless of course God forbid I get sicker.  For now I am just trying to do all I can to stay healthy.  Last night I gave in and ate something I really shouldn't have.  And I'm paying for it hard today.  Talk about pain.  I'm starting to figure out what makes my liver tick.  What triggers my H.E. Now if only I could get a grip on these crazy mood swings.  Seriously, its taking everything left in me not to break down and just let the depression and negativity take over.  Horrible.  But good things are coming, I'm counting on it.  I have my disability hearing on Friday.  And if that works out, life is going to get a lot easier for us.  It cant be any worse than getting approved for 26$ in food stamps.  Fingers crossed.

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Thank You!

Just wanted to write a bit today to let you all know how much your support means to me! Its been a crazy emotional week, well 2 years really, and I could not have come this far without my friends and family. Some of you I have known my whole life, some of you I have just met and some of you are my blood. Either way I am a better person for knowing each and everyone of you and am so glad you are a part of my life.

When I was first diagnosed back in 08 I don't think I realized how big of a deal or how hard of a struggle it was going to be. My doctors have told me from the beginning that it was going to get bad. They have drilled me on what to look out for and what to do in case of an emergency. I think what's really helps is their honesty with me about what I am facing. I will save all the details for another time though. This was supposed to be a quick post while I wait for David to finish working.

So back to what I was saying! Thank You. Thank you for keeping me and my family in your thoughts and prayers. Thank you for taking the time to read my story. Thank you for your donations. Thank You for the gifts and sweet letter and emails. Thank You! I could not have come this far with out the love and support I have been given. And I know that you will all carry me through the worst of it. I will be stronger and better in the end! All because of you all! And for that I'm am blessed and so very grateful!

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Dreaming Easy, Living Hard

I wonder what it would be like if life were easier. If I never had to feel the sadness of a broken family or the heart aches of losing babies. The struggle to keep my own family together or the stress of trying to keep the bond between my own brothers and sisters. And when that wasn't enough,I also get the anger, fear, loneliness and pain of living with rare blood and liver diseases.

I used to dream of picket white fences and the sound of my kids laughing echoing through the house. Fresh cooked meals every night. And having a little time with my husband at night after the boys go to sleep. Instead things are the complete opposite. My life is nothing like I dreamed it would be. I try each day to be grateful for what I have, but I can't help but want more for us.

I'm not expecting life to just magically be easier either. I know we have to make things happen for ourselves. Just wishing it was easier for us to get there. There is always something standing in our way. For us, when it rains, it doesn't just pour, its a freaking hurricane.

There are so many people who have life handed to them on a silver platter. They don't need to worry about anything. And yet they take it all for granted. I don't want to be filthy rich, I don't need a huge house or a collection of cars. I want a house that is in our name, I want David to get paid for what he's worth, I want cars that don't break down on us and I want my kids to grow up feeling safe and loved. And as much as I enjoy staying at home with my boys, I wish I had the ability to work and help make these dreams come true.

I'm tired of having to depend on people for help. Or for people offering their help only to rub it in our faces and try to make us feel worse than we already do. I'm tired of staring at the stack of bills that are holding us back. I'm tired not being able to relax when, where and how ever I want. I'm tired of having to hush my kids or scold them for things that I personally don't have a problem with. I'm tired of being tired and I'm tired of being sick! I'm just so tired.

But come tomorrow, after a few hours of sleep, I will put on my happy face, get up and try my best to make it through the day the best I can. Because that's all I can do right now! Here's to hoping tomorrow this funk that I'm in is lifted and I can see the light at the end of the tunnel. I don't mean to sound ungrateful or rude. Its just how I feel right now! And for the record, things have been getting a little loopy in my head, so I might not make much sense. I blame the toxins;)

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Its a new day

I have 3 unpublished posts all about yesterday and they all seem like nothing but whining and complaining.  Yesterday was a good day, last night sucked.  I'm over it.  Heres to today!

I got of the phone with my Hematologist a few minuets ago.  My INR is therapeutic.  2.2!  So that's good news.  And because he is awesome and is willing to try and make my life easier, I'm on monthly blood checks and I don't have to go back and see him for another two months.  We have come a long way from my weekly visits.  Thank God!  And I don't need to see my GI unless I need to.  That means my next appointment isn't for another 4 weeks when I go in to the Liver Clinic.  Now I can focus on my next big hurdle.  My disability hearing is on the 25th.  And I don't know what I'm going to do if I am denied.  Ill save the details for another post though. 

My brain is a little foggy today, so bear with me.  If this is nothing but a jumbled mess, feel free to tell me!  I have so much more I need to get off my chest, but I'm not in the right mind to write it out now.  I'm hoping that a nap and some time with the boys will help. 

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Late night numbers

So its going on 2am I'm up still. Looking at The Organ Procurement and Transplantation Network (OPTN) again.  Heres the numbers tonight.

In Region 4 (Texas and Oklahoma) there are 

• 1922 people waiting for a liver
• 855 are females
• 10 have Budd Chiari Syndrome
• 92 are between the age of 18 and 34
• 1,003 are type O blood
• 3 are Pacific Islanders
• 682 have a Liver MELD / PELD 11-18
• 95 have been waiting less than 30 days

At my clinic (Methodist Specialty and Transplant) there are

• 171 people waiting for a liver
• 65 are female
• 2 have Budd Chiari Syndrome
• 9 are between the age of 18 and 34
• 87 are type O blood
• 1 is Pacific Islander
• 41 have a Liver MELD / PELD 11-18
• 5 have been waiting less than 30 days

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A Good Day

Today was one of the most normal days I've had in a long time. And by long I'm talking like the last year and a half.

The boys have been getting up earlier and I have been more tired, so we have been adjusting. This morning when I woke up both boys were in bed with me. Full of smiles and giggles. There is no better sound than that of you children laughing. I love it.

We spent most of the day in the kitchen. Its been a long time since I've really been in there. Yesterday I made homemade spaghetti sauce and today I was making chicken broth for fridays tetrazinni. I'm doing my best to avoid sodium and so I've cut out most canned and processed foods. Takes more work, but its so much better.

While I was busy doing that, the boys had set up their own kitchen. Their imagination blows me away. They use drawers as ovens and cabinets as fridges. My oldest declared me Chef mom. And asked that I call him Chef Anthony. But Chef Alexander was the head chef! The best 1 year old chef in the world:). We made pretend pies, cakes and soup. We served our customers, who were all very happy with their food. And according to Ant, he made enough money to buy me our own house for my birthday. I wish!

Its been a while since I've been able to disconnect from the pain and stress of being sick. I needed a day like today. I got to be a normal mom. Having fun, playing and laughing more than I have in a long time. As I'm getting in bed I can already feel that tomorrow is going to be less fun. But I'm glad I had today!

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H.E. scares me

I had my first H.E. scare today. And that's H.E. as is Hepatic Encephalopathy not HE as in David;)

It was like a movie that's starts in the middle of the time line. All of a sudden there I was pushing a grocery cart full of food through the crowded isle. There was a man walking beside me. I was trying hard to check him out through the corner of my eyes. I just remember thinking, God! Please let it be David! I didn't know what store I was in, wasn't sure if the cart was even mine. As soon as I realized it was David things fell back into place. I laughed and explained why I was walking fast and staring at him that way.

I laughed about it because I really didn't feel like busting into tears in the middle of HEB, but there was a lump in my throat the size of Texas. And now here I am at 2am feeling more afraid than ever. What if it had happened yesterday while we were at Walmart? The boys were on the other side of the store looking at sports stuff while I shopped. What if I don't remember David next time. What do I do if I can't snap back to reality and figure out where I am? Or if I wander off? I am feeling the lowest of lows right now. I feel like a child who needs on of those backpack leashes. I feel broken...

The good news is there was lots of good food in my cart:). Lots of low/no sodium goodies. Fruits, veggies and meats. The worst thing in the cart was the garlic bread. But I won't be eating any of that anyways. And I have all I need to cook up a batch of low sodium spaghetti sauce tomorrow! Score!

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I'm listed

I went through the mail looking for my name. I've been waiting for something. Asking myself each day, if today is the day. I'm not sure why I was so anxious to get a letter that would only lead me to more waiting, but I was. As soon as I saw my name with the name of the Intake RN I knew what it was! I was like a kid at Christmas, ripping open the envelope.

"Congratulations! You have been added to the UNOS liver waitlist. Your official list date is 05/25/2010. "

It was finally here. I guess I was expecting to feel some relief, knowing that I was listed. But panic would be a better word. I feel rushed to make sure I've got my plans laid out. So many decisions to make, questions to ask and preparations to be made. And all the while not knowing when the call will come.

Here's to more waiting!

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