Crazy much?

Well the rest of the week is doctors for me. Tomorrow I see my hematologist.  Hopefully my blood is good.  It was nice having a week off of labs.  Friday is therapist day!  Whoohoo!  Next week the little one has his 2 year check up and then I have the dreaded Liver Clinic. I shouldn’t say dreaded, because I really love my Dr and the staff at the Clinic are freaking awesome. Do you feel a “but” coming on?!?

But…This whole waiting game is messing with my head. If I’m going to be sick, I want to be sick now. I want to be fighting to get better, I want to know that getting better is an option. Instead I am waiting to get sicker. Waiting for my body to quit fighting for me, and hoping when I do get sick its not so bad that I cant come back from this all. I completely suck at waiting. Or does waiting just suck this much? I try to keep busy, but nothing helps. Sometimes I feel so alone and other times I feel like everyone is judging me. I'm pretty sure I’m going crazy.

The weather has been horrible, the boys are sick and cabin fever is setting in again. I cant drive. I mean literally, I don’t know how. And even if I did know how, thanks to my good friend H.E. driving is on my big fat do no do list. I’m feeling more claustrophobic than ever. I want my own space. OCD is kicking in and I want things done my way. Not easy to do when you are living in someone else’s home. Speaking of OCD, I have become obsessed with hand sanitizer. Did you know they make lotion with sanitizer in it? Why am I just now finding this out? Oh yeah because I have sanitized my hands to the bone. OK maybe not the bone, but they look dead. Dry, white and flaky. Gross
It’s a good think I see my therapist this week eh? I have so many things going on. I’m trying so hard to keep my head above water. But sometimes, it feels like there’s just no hope. I really need to get my camera out more. I have the sudden urge to go run. I’m jumping out of my skin here. Ok now I sound really crazy. Just going to stop here!
Here’s to hoping they don’t send me to the Looney bin on Friday! Hope everyone is having a great week.

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Im back

I haven’t written in a while. Things have been more than the usual crazy. So many things going on. So many prayers sent. None answered. But I keep telling myself to have faith. That’s all I can do now. I don’t know all the details, but I know my family needs prayers.

As hard as this week will be, I’m ready for it. I used up all my excuses and pity last week. This week I’m putting my happy face back on. You know, the one that hides the pain and sadness so well. Should be interesting to see what the therapist has to say this week. Speaking of doctors, this week I see my hematologist too. Next week I have my Liver Clinic appt. And I really home my regular Dr. is there.

I also fell off the exercise train. Fell off and run over by is more like it. But it’s a new week and I’m jumping back on. I did stick to my cooking at home goal. Yay me. It felt good to know what I was making each day. I watched my serving sized and didn’t have any second servings. I did get a little chocolate happy which is quite odd because Im not a big chocolate person. We did grocery shopping today and I am set for the week. Lots of veggies and only a few processed things. I’m juts not ready to make my own hamburger buns yet.
I don’t know what I am making each day, because Ill be cooking around my Drs appointments. But here's what we are having.


Chicken strips and fries. By making these from scratch I will be cutting out about 300mg of sodium. The calorie count does go down but only by a little.

Sloppy Joes. This is another thing I started making at home. The boys love this stuff but there is no more Manwich here. Again the calories don’t go down a whole bunch, but the sodium about 300mg again! The recipe I have calls for ketchup and tomato paste, so I will use the no sodium kinds.

Chicken Roll ups are a fajita of sorts. Boneless Skinless thighs with bell peppers, seasoned and wrapped in a tortilla. Good stuff. I skip the tortilla because if I don’t then I want cheese on it and that plus the tortilla is a little to much sodium and calories for me.

Pork Tenderloin. Yes I know it was on my menu last week, but we ended up with leftovers one night, so I have carried this over to this week. Not sure if I will stick with the same recipe or not, but yeah.


I love short weeks. Especially when both my boys are sick. Stupid weather. Anthony got soaked when they were leaving Monster Jam last weekend and my this morning, both boys are coughing and congested. Should make for a fun week. I guess I better get to cooking. I started this post last night, fell asleep, wrote a little more this morning, went to get Ant from school, and now I’m tired of writing. 

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Celebrating Life

It's almost 1130 and I'm just now settling into bed. Two years ago, I was in another bed. About to welcome my second son into the world. I had no idea of the adventure I was in for.

I was diagnosed with Budd Chiari Syndrome at one of my prenatal ultrasounds. My pregnancy was smooth...when you take out the stress of having doctor visits daily. My GI Dr told me if it had been discovered earlier in my pregnancy he would have recommended I terminate. He then suggested I be induced as early as possible. No one had any idea of how my body would react. Would the stress of childbirth put my organs into shock? Would the pressure of pushing cause my liver or spleen to burst? What if I pushed to hard? Could my hert handle being in labor? These things were the last things on MY mind. I just wanted to see my baby boy. I wanted to hold him and thank him for saving my life. I wanted to promise him that I would love him till the day I die. Even if it was that very same day. At 11:44pm, I heard him cry. Happy Birthday Alexander Cruz Munoz. My Guardian Angel.

Two years later, we are celebrating life. I might not be here today if it weren't for him. And obviously he couldn't be here with out me. I will be the first to admit that he is the most stubborn little boy I've ever seen. I'd like to think that with 5 brothers and 5 nephews I'm perfectly skilled in that observation. He is hard headed, a tough guy, he knows what he wants and he knows just how to get it. He has the puppiest of puppy eyes and pout that is straight up irresistible! And at the sweet age of two, he can throw a tantrums like a teenager.

But his hugs and kisses warm my soul. The way his little lips pucker up when he's playing always makes me smile. The fact that he can almost count to ten and loves books makes me so proud. The way he rubs my check when he nurses is something I want to remember forever. He's my little man and I love him more than life itself. The life he has given me.

Happy Birthday baby! Mommy loves you so much. I only hope that I can repay you for what you have given me. I promise to love you and believe in you always. God has blessed me with you. And I will always remember that!

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Disappointment

That word pretty much sums up my week. I hate weeks like this. I'm actually looking forward to next week because it can only be better...right?
Monday was supposed to be fabulous. David had a day off for once. The plan was drop Ant off at school, go get an oil change, go back to the school and surprise Ant at lunch. Then take the little one out for some alone time with us. All while waiting for my bloodwork results to come back normal.

Anthony did make it to school. The car did get the oil change, but turns out it needed new wipers, and an alignment and something else that shot the bill up to $300. We spent lunch in the dealership waiting room. Got back barely in time to pick up Anthony from school. So no time with the little one. And only to round the night out with a call from the Dr saying my INR is at 3.2. Still high :(

Tuesday was my worst day yet. I got up to make Anthony breakfast. Then went back up and crawled in bed. I didn't get out until it was time to pick Anthony up. I have never let myself "be sick" but I could not fake it anymore. I was hurting and exhausted and I couldn't do anything about it. I feel like I let myself give in and I'm disappointed in that. I can't give up. I can't let myself be sick. I am worried that once I give in, there will be no coming back. I don't know if that even makes sence.

The rest of the week was spent trying to figure out why my medication cost went from $80 to $800. For only ONE prescription. Turns out I now have a $1000 deductible on my meds. Then I will pay 25%. Good news is, if I fill all my scripts I could max out on my first order. Bad news is, its a freaking grand! Even if its a 3 month supply, its redonkulous! And thanks to my wonderful friends, I've been looking up medication savings programs. I actually got a $100 discount.t card that I can use for monthly refills. Still going to cost an arm and 2 legs!

Then I got the call back from my transplant nurse. She was telling me how my high INR is a sign of liver failure. Good news. Sadly. And it also news that my dose of bloodthinners will go down. So that's pretty good news too. She said my liver and spleen are still enlarged, AND now I have gallstones. And the prefer not to do anything about them unless they have to. So that explains all the pain I've been in.

Today was the first Saturday in a while that we stayed home all day. It feels good, I feel like its the beginning of my being really sick. I feel like I'm losing control over my body and no matter what I do, there's no stopping it. The sad part is, I knew this would happen. Everytime something comes up, I freak out all over again. Again I'm disappointed.

Here's to next week being fabulous. I have labs again on Monday, so we will go from there...

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My bucket list

I have a few things that I have written down and hid away as things I want to do before I die.  But I was thinking, maybe I should set my sights a little lower.  Who knows if I will ever be able to snorkel in the Great Barrier Reef or get to Australia at all.  This year I really want to live. The truth is tomorrow isn't promised to us, so we have to make today count.  And with my health issues, this rings even more true.  So I'm going to make a bucket list for 2011.  Here's my list of 15 things I want to do this year.  Yes I know, some are simple things.  And some are silly.  But its my list and this is what I came up with. 

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

So there is my random list.  What do you think?  To easy?  I'm excited!  What are some things you would like to accomplish this year?

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Absence make the heart grow...

I know they say fonder, but it just makes mine lonely.

The boys went with their grandparents for a two night visit to family. 6 hours away! I was so exited for them! And a little nervous too. My oldest is 5 and still has some separation anxiety. And the baby still nurses at night. He's almost 2 and its only for comfort. I knew they would be fine.

I used this as a test to see how well they did with out me. I'm always worried that without me their lives will be put on hold. Not because I think I'm so fabulous, but because I'm their mom and I'm supposed to be here for them always. But in my case, its just not possible. So in the anticipation of the many hospital stays in my future, I sent them on their way.

David had to work the first two days, so here I was...alone. I took a shower with out anyone banging on the door. I also sung like a dying chicken in said shower. Why not, there was no one to hear me right?! I ate with out having to give bites to boys who said they weren't hungry but were starving as soon as I sat down to eat. And I talked to both of my sisters. Without distractions. For 6 hours straight! Both days:)

Tuesday night I wasn't feeling well so David bought me the new Twilight movie and I camped out in bed with my feet propped up They were swollen.  Wednesday night we rented 3 movies. I only managed to stay awake for 1!  But I slept so good that night! Come Thursday, I was missing them so bad my stomach was in knots. I missed the way the baby yells for me and the random hugs Anthony gives me. And strangely enough I missed the craziness of my life with them. It was boring and lonely.  A little time apart was just what I needed to refocus on the good, accept the not so good and spend some much needed alone time with my husband!

Today is Christmas Eve. I'm beyond excited to spend some time with all of my guys today! I've been up since 6 am and they are all sleeping...

**I wish you all the Merriest Christmas!  I hope you are all surrounded by family and friends!  Please say a prayer for those who aren't able to be with theirs.  My brother and his family who is spending yet another holiday apart. We miss you Leon and are so very proud of you!**

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