March 28, 2011

Winning weekend

I love weekends. Yes I know its Monday and technically the weekend was over yesterday, but Mondays are like my catch up day. You know, for the laundry I didn’t finish on Saturday or the grocery list I didn’t write on Sunday. No? Maybe its just me, but Mondays aren’t that bad.

This weekend was another good one. I am trying so hard to be grateful for weekends like these. But its like the black cloud that is Liver Disease just keeps finding me. My umbrella from the storm is always my boys. Even though they have been know to cause hurricanes for me too. When push comes to shove, they are everything I live for. No matter how hard the week is, our weekends make up for it easily.

The big fun this weekend. Riding a bike. Not me, I was asked to stay off a bike for now. But that doesn’t mean I cant teach Anthony how to ride one. Yes I know many kids his age are already riding with out training wheels. We had 2 things holding us back. My lack of energy and his unwillingness to get a helmet. He refused to even try them on. And the only time I did manage to get one on his big ole noggin, it was for an 8 year old. It fit, but I wasn’t sold on the idea. Neither was he. So we waited. Then finally Saturday he mentioned it. Within minuets we were in the car and on the way to the store. I wasn’t going to give him time to change his mind. We found one, for 5 year olds that fit and was pretty cool. It even came with a free hot wheel car. Double win!

Sunday morning we spent out by the school.. No traffic out there so it was nice. But boring. David wanted to shoot some hoops so we headed to the park, but that place was packed.. So next stop, another park with room to run and ride. I needed to raise Anthony’s seat but some how ended up just taking the training wheels off and convincing him it was OK. I explained to him that he was going to fall a few times and that it was going to be a little hard. But we both promised him that he could do it. And sure enough, after a little bit of bickering between David and him, he got it. I heard his little voice screaming. “Im doing it” And I turned around to see my baby riding his bike. Of course then he tumbled over the handle bars. But he got right back on and this time went for even longer.

And of course its all he has talked about today. I even had to print a photo for him to take to school and show everyone. He looks so small on the bike. We have had it for 2 years, but hes just now riding it. Guess someone is getting a new bike for his birthday!

I am so proud of him. He was so afraid and yet so determined to get it. I like to thing that I can be as brave as him. I am so afraid of getting sicker. Even knowing that only then will I get better. I hope everyone had a wonderful weekend. Here’s to the next one!!

Ant Bike

March 21, 2011

Just for a day

Today was the first normal day in a very long time. Today my mind was clear, and for a few hours I forgot that my body was failing me. The thought of my one day liver transplant didn't cross my mind. All the little voices that tell me to slow down were quieted by giggles and laughter. Yes, today was a wonderful day.

We spent our last day of spring break getting hair cuts and park hopping. We started out at the duck pond. But they were all stuffed so we headed over to another park nearby. The boys had a blast on the slides. And running in the fields. They were mesmerized by the kites in the sky. We even took a walk down the the lake to skip rocks. We spotted cactus and birds. Anthony and I talked about tadpoles and planned our next trip. Next time we will bring a picnic:-)

I was just a normal mom. Laughing, running and exploring with my family. I wish I had more days like today. Now I'm settled into bed and the pain is slowly returning. The throbbing in my side and the tingling in my swelling ankles. But it was worth it. For a few hours life was worry free...pain free. And I was the old me!

March 20, 2011

Stress and Struggles

Ok so a while back I was all pumped up and ready to shed some pounds. I had a plan and was going to stick to it. Yeah, that plan flew out the window. I have never been a stress eater. The Lord knows I have had lots of stress in my life too. But guess what people, I have gone to the dark side. And it shows.

If I was going to make excuses, here's what I'd say. First things first, I am no longer exclusively breastfeeding. That's when I noticed a change. Then I found out my Dad was sick and I kid you not, I buried my head in girl scout cookies. I'm so glad they are a once a year deal. Then came buying our first home. This was the icing on my cake. Well actually if there were icing, I would have eaten it by now. My stress levels went through the roof. And the weight piled on.

But to be honest, if you know me, you know I already have a ton of diet restrictions. I don't eat a lot of red meat, my sodium intake is minimum. Most everything I make is all fresh not processed and I drink mostly water. Now its only water. Gave up sodas for lent and think I'll keep it this way! I track my food and water intake. On an average day I'm only eating 900-1200 calories. Never go over on my fat or carbs unless we eat out. But then when you eat out you pretty much go over on everything. And still the weight piles on.

I've also been walking. Not much but 2 or 3 times a week. My usual route is 3.4 miles. And of course its not like I'm sitting around all day. These boys keep me going from the time they wake up, to the time they go to bed. But all my efforts have failed. I have gained 8 lbs in the last 6 months.12 in the whole year. And when I say I'm almost back at my pre-pregnancy weight, I'm not bragging. I'm pretty sure its the stress. As that's the only thing that has changed recently. Besides the size of my behind.

I'm dreading going to the transplant clinic next week because I know exactly what my Dr will say. I know I need to lose weight, obviously. I thought having a liver disease was going to suck the life out of me, but instead it has me all pudgy. My primary Dr told me to go low fat. The only problem is everything low fat is crazy high in sodium. Which my transplant Dr told me to stay away from. My transplant dietitian told me to eat more veggies and fruits but they all contain a lot of Vitamin K. And my hematologist told me I have to avoid that. What the hell. I don't know what I'm going to do, I just k.ow I need to do something. Obviously blogging at 3 am isn't going to help, so I'll stop now! Much love to you all!

March 17, 2011

The little things

Happy St. Patricks Day everyone. I hope you ha e your green on:)

We aren't Irish. Well not that I know of anyways. But its one of those extra holidays that is just way to fun to pass by. I spent the past couple of weeks talking about leprechauns and their pots of gold. Anthony thought I was just being sill but today, he is a from believer. See, he decided he was going to catch one if they really did come to the house. So last night before bed, he placed his trap. Quite clever if you ask me. He turned a laundry basket upside down, propped it up with a book and placed a plate of (toy) spaghetti as bait.

As we were getting ready for bed, we hear a crash. The trap worked...on our chihuahua! So we let him out and reset it. Hugs and kisses, lights out and everyone was sleeping. Little did we know that, while we were dreaming those sneaky little leprechauns snuck in. We must have caught one, because the book had fallen and the basket was all the way down. So I woke the boys up to go and check. Don't you know, those sneaky little guys stole our spaghetti, but the left a big old pile of gold coins! Anthony face was priceless. As he peeked through the holes trying to figure out what was in there.

I didn't get to do all that I had planned for the day. I have a headache that has me down for the count. But the boys are out back with their grandparents and I can still hear Anthony talking about the "lefercan" that he almost caught. It's the little things like that make life so amazing.
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March 16, 2011

For the Better

So I'm getting ready for bed tight and I'm thinking, am I doing the right thing? See. We are going closing on our first, very own home next month. But I'm so worried its the wrong choice. Of course then I run through the pros and cons, and I believe we are doing what's best for our family. Why do I always doubt myself?

Yes living here with the in-laws has been a blessing. Not having to pay rent or utilities. Well, we pay the cable and my MIL's cell. We do try to help out when ever we can. And having someone around just incase I needed anything has been a safety net. But really is all this worth it?

I think most of the problem is I feel as though certain people do not believe I can handle it. You know, because I'm sick and all. I wish you could see my eyes rolling. Even here, I do the majority of what I need to be done. Yes sometimes the boys stay downstairs while I do what I need to do upstairs. And somedays I love having someone else take them out back when I don't feel up to it. But again, is it worth it?

We chose to move so that we could get the chance at being a real family. Mostly for the boys. They need a place where they can just be kids. Surrounded by things that are theirs. I can't wait to let them run and scream without having to demand that they sit and be quiet. Kids are meant to be free. Yes, to a point. No, I will not be letting the hang from the fans and walk all over me. But to see their smiles when the can turn the music up and dance around and just be, is what I'm most excited for.

I will admit that I'm looking forward to being married again. Not that I was unmarried. But trying to find time for your marriage is hard enough with kids. When your parents are watching too its just...awkward. I miss the random hugs and kisses. The movie time cuddling. And so much more.

I know being on the transplant list and expecting to only get sicker doesn't make it any easier. But I want to spend the next however healthy months or years living in my own house. I want to spend that time with the boys making pillow forts in the living room and playing hide and go seek. I can't lie. Knowing that my boys and David have something to call their own, if God forbid something happen to me, is one less burden on my chest. It's a small empty house. And we are going to make it our home and fill it with memories!

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March 12, 2011

Dreaming of a vacation

The past few weeks have been such a mess. A good mess. But so tiring. It looks like we have a few weeks of calm before closing. Yes, on a house. I'm so beyond excited. A little nervous, but I know this is the right choice for us right now. I'm just looking forward to unpacking my life that's been boxed up for the last 3 years and having a "home" again.

But its so stressful. It doesn't help that meetings and appointments all week means I can't take a certain medication, so my head is so foggy. I'm looking forward to a whole week of no school. I'll take my meds first thing in the morning and won't have to worry about it getting out of my system in time to pick Ant up from school. What is really love is a nice stay in a calm and relaxing hotel. Been trying to convince David to take me back the the Westin at La Cantera. If your ever in SA, and have the money, its worth every penny! We won a free night last year and it was wonderful and so refreshing! I long to go back.

Anyways. I know its been a while. I promise I have a ton of things to share just need more time! Bring on Spring Break :-)
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March 2, 2011

My goals for 2011

Wait…Its March already? Damn. That happened fast. I was just thinking I really need to get a move on this years to do list. A few of them are a work in progress and some I just need to stop procrastinating. And some of them, you can help me with. Yes…you:)  Anyone care to help?!?


Ok so heres my list

1. Make a blanket for The Linus Project
2. Raise $500+ for Donate Life again
3. Get my drivers licence
4. Take the boys fishing
5. Fire a gun
6. Read 10 books
7. Spend the night in a 5 start hotel
8. Write more letters to my loved ones
9. Be a vegetarian for a week
10. Find our own place
11. Donate to Locks of Love
12. Lose 20 lbs
13. Go camping
14. Get 5 people to be registered donors
15. Volunteer

My blanket is planned, Since I don’t have a sewing machine, yet, I am going to make a no sew fleece blanket. They look really easy to make, but I have heard they are time consuming. And I still have to find fleece that I like. But like I said, its planned!

We are in the process of bidding on a house. We found out on Monday that another offer was put on the house, so today is the big day. Our highest offer is in, so we are waiting and praying that it goes through. If not, I'm sure there is another one out there. But we really want this one!

Spring is coming! And Anthony is looking forward to fishing. We already found a fishing spot. He has 2 poles. Thanks Grandpa Jim! I wonder if he will share nicely with Alex? When I told David camping was on my list, he was less than thrilled. So we compromised. There are places near the river where you can rent cabins. So we will either do that, or just pop a tent by the lake and spend the whole day there and come home to sleep in our comfy beds. But now I'm hoping that we will have our own backyard soon and we can just camp out there!! Or David can get us a room at a 5 star hotel and knock out 3 of my goals in one day!

Being a vegetarian for a week will also have to wait for our own place. There is far to much bacon and tacos around here to do that now! And with that comes the losing weight thing too! I know, its an excuse, but that’s my story and I'm sticking to it!

I did find a gun range, but I'm chicken to look into it any further. And Ive decided to just get my permit over with soon, so that after my transplant when I am allowed to drive again, I will actually be legally allowed to! Oh and my hair is slowly growing. I'm dreading having long hair in the hot Texas summer, but it will be so worth it! I have to check and see how much Locks of Loves needs.

So that leaves my 5K fundraiser, reading 10 books, encouraging 5 people to register as organ donors and volunteering. So that’s what I need help with. I’m pretty sure I know where I want to volunteer, but it might have to wait till summer time so I can bring my little sister along! And if you aren’t already an organ donor, please sign up here at Donate Life America  and let me know you did. It only takes a few minuets and will save lives!  After you sign up, some back here, let me know and Ill send you something!!  Ill start raising money for teh Donate life 5K as soon as I can and all that’s left is to find some good books to read! Easy Peasy. Its going to be a great year!

Much Love!

March 1, 2011

Im 1 in 100,000

Yesterday was Rare Disease Day. Typical me to be a whole day behind. But for the record, I was so exhausted yesterday I was in bed by 9:30!!

In 2008 I was diagnosed with Budd-Chiari Syndrome. I know what your thinking. Budd Chi…what? That’s the usual reaction I get. Followed by a "what the heck is that?" and a really curious look on peoples faces.

Budd-Chiari Syndrome is a liver disease that affects 1 in 100,000 people. BCS is an obstruction of the blood flow that leads out of the liver to the heart. In my case and in most cases that is a blood clot. The blood accumulates in the liver causing it to become congested and damages the liver cells. Blood has also back up in to my spleen causing it to be enlarged too!

Symptoms of BCS are usually pain in the upper right abdomen, Enlarged liver and spleen and fluid build up in the abdomen (ascites). For me most days the pain isn’t to bad. More like a dull ache. There are days where I feel like I am being stabbed repeatedly though. Mostly when I am not mindful of what I eat. My liver is very enlarged. Last I heard, I spanned from one side all the way to the other side. My GI calls it “impressive” and not in a good way either. And my spleen is enlarged as well. As far as ascites goes, I have it mostly under control. In other words as long as I eat what I am allowed and stay away from the super salty foods, I am ok. I have been warned that eventually I might have to take water pills or if it gets really bad have the fluid drained from my stomach. Doesn’t sound like fun, so I am trying to avoid it all together.

One of the complications of liver disease that has hit the hardest is called Hepatic Encephalopathy. When the liver is damaged it doesn’t filter properly. All the toxins that are usually flushed out are instead able to continue to my brain. This causes me to be confused, easily distracted, exhausted and sometimes I slur. On really bad days I have lost time, forgotten where I was(in the middle of the store) and have had really bad episodes where I felt like I had one to many drinks. Because of this I am unable to drive or work. 

The only treatment for me is to have a liver transplant. And in my situation, I am waiting for a cadaver liver. There is no living transplant for me. I was listed with UNOS on May 25th 2010.