You are what you eat

So I'm on my way to getting healthy. I cant believe it took getting sick to realize just how important even the littlest things like reading labels is to our health. After my consult with the dietitian at the Liver Clinic, I came home and read the labels of everything. I am so beyond shocked at what I found.

Ive decided to give myself some time to adjust into things. Its quite hard for me because we are living with my In Laws and I don't do the majority of the cooking. And what is served isn't always the best choice for me. And I cant ask that my mother in law cater to my new diet, even if we could all benefit from it. So its going to take some planning ahead for me. But its what I have to do, so its going to get done. The hard part for me is that I love food. Ill try just about anything. Although there isn't much I haven't eaten already. Growing up, my father was the one cooking. He refused to buy us sodas and junk food. We didn't have table salt, only Hawaiian rock salt. And we hardly ever ate fried foods. Of course once I was out of the house that changed. Working long hours made take out and prepared foods a favorite. Processed food is the devil. It's time for a change.

The main goals for me are...

Sticking to a low sodium diet. To much sodium causes the body to retain excess fluid that can collect in your legs, belly and even in your lungs. That means less than 2000mg. One tea spoon of salt contains 2000-2400mg of sodium. The typical American diet averages 6000-8000. So if I were to have 2 Hot pockets and a soda for lunch, I'm pretty much done for the day.

The second goal is to watch the amount of protein I eat. To much protein means my liver will have to work overtime to process it. My dietitian said that I should not be eating more that 6 ounces of cooked red meat a week.  That's 1 or 2 meals depending on what it is exactly.  Have I mentioned that I'm a steak and potatoes kinda girl?  When I asked what to do when we have steaks for dinner and Ive already had my red meat for the week...she suggested I have a boiled egg or 2.  I about fell out of my chair.  But hey, what do I know? 

And of course the other thing, that is to be expected is exercise.  Which is maybe harder than a diet.  Because of my liver, its hard to do most just about anything that strains my core.  All my doctors suggested walking or swimming.  Walking is a tough one, because as much as I would love to do it, the pain that hits me afterwards is killer.  And I'm not a big fan of the swollen ankles that come along with it.  So swimming it is.  But I need to find a suit first.  No better excuse to shop than for good health right :)

How much sodium do you eat a day?  Do you have a salt shaker on the table?  Anyone have any tips to lowering your sodium?  Id love to hear them.  Until then, here's to a healthier me.  And you :)

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Paperwork, Deadlines & Meetings OH MY

It seems I hardly ever turn on the computer anymore. I guess I could blog from my phone, considering I do everything else from it anyways. What ever did we do before before smart phones? Anyways things have been the usual crazy around here.

Friday we had our pre-hearing meeting with our lawyer. Pretty much we went over who would be in the room, what to wear. We also went though my medical reports from all my Doctors and went over my medications, symptoms and reasons for not being able to work. Dr O, my transplant Doctor clearly stated that he feels I am 100% disabled because of the Hepatic Encephalopathy. I had heard him say it. And I know it is true, but to hear someone say I am not to be relied upon, kinda hurt my feelings. I mean its good because it will help my case, I hope, but no one wants to be called unreliable. I know it doesn't mean that I'm completely useless, but as far as working, I just cant right now. I hate that I'm put in the position to need help, and I hate asking for help, but the truth is, without it, I don't know what I am going to do. My hearing isn't until the 25th of June and I'm praying it doesn't take that long to come back with a decision. My social worker suggested I write out my medications and the way they affect me on a daily basis. And they point out how that would prevent me from working. I'm going to be doing that this week too.

I also got word back from Food stamps. Another thing I thought I would never have to ask for. We have gotten so far off of the road we planned to travel. Anyways, seeing as all our money goes towards bill and more bills, we decided to see if we would be approved for food stamps. At first I couldn't believe I was even thinking about it. I wanted to make sure that I wasn't taking away from anyone else who needs it more than I do. But now I just tell myself that we need this just as much as others. I am over the gasps of people who cant believe we applied. Unless you want to buy my groceries, feel free to keep your comments to yourself. Thank You! So we faxed in the paperwork today, I called and double checked that they got it. And now we wait, yes more waiting, and hopefully we get approved. For how much? No clue. But at this point any money I don't have to spend on food is money I can spend on medication. I had to get over my pride and ask for the help. If you need it, ask for it! That's what its there for right?!

I have also been going though my medical bills and taking a real close look at them. I suggest you do this when you get the bill. I found 2 bills in which the insurance didn't pay their part. I had to call and ask why. Thankfully they were great about it and are going to be paying it. That really helps. I also noticed the price difference between scopes done at the hospital and at the endoscopy center. The last one I had done, I chose to do it at the hospital because it was closer and my inlaws could drive me. My first one was done at the Endo Center. The hospital bills are so much higher. More than what we would have lost it David had taken the day off. Shoot the bills were more than he makes in a week, and that was just the hospital portion. Still waiting on a bill from the Anesthesiologist and Dr H. The thought of not being able to pay my hospital bills eats at me. I hate it, but what can I do. Maybe they have a buy 2 get one free special next time I go in?!? Ill be sure to ask!

The other thing I have been doing is checking the price difference between ordering my medication at CVS and online though my insurance. We have a Caremark plan though our insurance to pay for medication. And the amount I save if I go through them is amazing. I don't know why I didn't do it before. Plus I get 90 day supply instead of only a 30! So there is just another thing you might want to check!

I hope you are all had a great weekend. Sending spoons to my spoonies and hugs to you all!

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Cankles, Bruises and Smiles

This past Friday my baby turned 5 and all he wanted for his birthday was to go to the beach and stay in a hotel. The weather was awful, so we weren't going to go. But then last min, we changed our minds. Typical us! How could we not. It was all he wanted. And while it cost more than any present we could have gotten him, the memories we made, were worth every last penny we spent. Living for today and making everyday count!

We stayed right on the beach. The Radisson on Corpus is beyond fantastic. I don't think we could stay anywhere else now. The back steps take you right down to the beach. The restaurant is great. We had a shrimp, pasta and salad buffet for lunch before leaving! Yum! And their burgers are good too! They have a cute little souvenir shop and the pool has a wet bar. We will save that for our adult only trip! They also have a bar on the 3rd floor. Not really beneficial for me, but I know David would enjoy it there.

We could see the USS Lexington from our balcony. Both boys though that was awesome. I wasnt sure what to expect when we went in, but it was really cool. And so many references to Kwajalein were there. Made me realize how cool it is to be born and raised in the middle of nowhere! When I was younger I could care less about history, but now that I am older I love that I can tell my sons, see that up there, that's where I am from. And the Aquarium was a blast! We got to touch hermit crabs and stingrays. We saw turtles, otters, jellyfish and all other kinds of things. We especially loved the playgound they have. It was separated by age group so there was something for everyone. So much learning this weekend. About animals, WWII and about each other.

This was our first vacation as a family. We have always had other family members with us before. And now that I am pretty much tied to the hospital, we weren't really sure we should go. But I am so glad we did. I had a whole weekend of watching my boys laugh and run and smile like I have never seen before. David and I got to just be us. And we got to just do whatever we felt like on our own time. I am paying for all the walking we did. My ankles are swollen. Dont know how I managed to bruise hips and back. I was worth it all though. Next time I'm getting a wheelchair. Or an electric scooter. That would be perfect!

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The moment I became a mom

It was 5:14 am.  For the last two days I had been trying to avoid that very minute.  Secretly I was afraid that I was going to fail.  That I wouldn't know what to do once he was really here.  A moment I had been waiting for, for many years.  I had dreamed about the perfect pregnancy, labor and delivery.  This was not it at all.  Then the Dr shouted something about the cord.  "The cord is to tight!"  "Sorry Dad the cord is just to tight"  And within seconds I caught a glimpse of the backside of a baby as he got passed thought into the NICU window.  His body was limp, lifeless.  He had a full head of jet black hair.  That was my baby, I was a mom. I knew in my heart he was meant for me. 
It wasn't able to go in and see him right away.  Apparently I had hit my epidural button one to many times:)  We asked the nurse if she could take a picture of him since we couldn't make it in there.  She was skeptical, but she did.  When she came back she told us that things weren't as bad as they looked.  This was the first good look I got of my baby.






A few hours later we walked down the long hallway to the NICU.  Scrubbed our hands and walked through the doors.  Before I knew it I was sitting in a chair and the nurse was handing me my baby.  In that moment I knew everything would be OK.  That was the moment I became a mom. He was so tiny and there were cords and wires everywhere.  But he fit perfectly in m arms.  He calmed down in my arms.  He was, I was, right were we belonged. 

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Homemade playdough

Just thought I would share our newest find with you all.  I'm not able to be as active with my boys anymore so I went on a search of things that I could do with them.  This is perfect!  Very low energy, yet challenging for the kids and its practically free because you most likely have the ingredients in your pantry.  Can it get any better than that?  And it keeps my 4 year old quiet for more than 30 minuets!  Extra points for scoring me some quiet time.   I have some pictures of our creations, I will have to find them and post them.  But here's the recipe for now.

1c      all-purpose flour
1c      water
1/2c   salt
1T      cooking oil
3t       cream of tartar
food coloring

1.  Mix all ingredients in a pan
2. Cook on low heat, stirring frequently
3. When dough pulls away from the sides of the pan and begins to form a ball, its done.  Do not overcook.

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Liver, its whats for dinner.

**Warning, you'll never look at chicken the same**

How does one explain a rare liver disease or any disease for that matter to a 4 year old?

We have always been very open about what I have been going though with my oldest son. When I got pregnant, we explained that there was a baby growing in mommas tummy and that one day we would go to the hospital and get the baby out. Nothing detailed, but just so that he knew what was going on.

Then when I found out I was sick, I thought maybe it would be to much for his little head(and heart) to deal with. So when I had to start giving myself injections, I would make sure he was occupied and looked after while I ran upstairs locked the bedroom and the bathroom doors, take my meds and hurry back down before he realized I was even gone. And it worked. Until the day I forgot to lock the doors and just as I got the needle in, the door flung open and there stood my horrified child. And there I was, sitting on the edge of the tub, with a needle in my leg and a horrified look on my face too! If you have ever taken Lovenox, you know that it burns. And I'm not talking only when you actually inject it, you can feel the burn the second the needle pierces skin and for mins after you inject. At that point I went ahead and pushed in my meds, withdrew the needle and dumped it in my sharps container. I was in such a rush I forgot to hold the gauze and now had blood dripping down my leg. It felt like time had frozen.

Before I knew it, the little guy was standing at my leg with a tissue, cleaning the blood and telling me that everything was going to be alright. Here I was expecting him to be scared and instead he was nothing but concerned. I should have known, that's just the type of kid he is. But I guess I just wasn't ready for him to know there was something bigger going on. When I apologized for not locking the door, he replied with but I want to help you get better. And that was the start of it. Since that day, there have been many questions asked. Many answers to all the why, what, who and whens. But from that day I told myself that I was going to be as open as possible with my son. I told him if he ever has a question to just ask.

Today as I was chopping chicken breast for dinner he asked me what I'm cutting. My head was pretty foggy, so I was trying to concentrate on cutting. Instead of telling him. I showed him a piece, and right as I was about to cut, he declares "I'm not eating that liver". At first I wasn't sure what he was talking about. But then I remembered that I had joked to my husband about how the drawing of a liver in one of my books looked like a chicken breast. And that started the snow ball of questions.







Q: Why isn't your liver smooth like the chicken?
A: Because my liver is sick.

Q: Well when will it get better?
A: When the Doctors give me a new one.

Q: Is the Doctor going to cook it?
A: No baby. Someone will give me their liver and the Doctors will put it in for me.

Q: Like its your Happy Birthday present?
A: Exactly. Then I can have many more happy birthdays.

Q: Did you take your medicine to keep the X's out. (In one of my book, infection is shown as X's trying to attack the liver.)
A: I don't take them yet, but I will when I get my new liver.

Q: Can we go get it now?
A: Not yet, the Doctors will call me when its my turn.

Q: Will a hug make you feel better?
A: Always :)

There were the easy questions. He once asked me out of the blue If I was going to die. Then cried until I promised I wouldn't. Yes I lied, shoot me. But I didn't know what else to do. We have read all the handbooks I was given at the Transplant Hospital together. He "studies" the pictures and has anatomy down pretty well. He knows that my liver isn't working well and that the bad guys (toxins) get to my brain and make me silly. He might not understand it all, but at least he isn't in the dark either. He knows that most days, I am not feeling good enough to play outside, and he usually doesn't get to upset about it. And when we do get to play, he is always sure to be careful and is always asking me if I feel OK. I think I made the right choice. What would you have done?

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Moving forward

The mail has been good to me lately. More good news than bills this week! Knock on wood. No seriously, knock on wood.

Today I got my notice for my Disability hearing. We are coming up on a year since I first applied. I remember at first feeling really bad for applying. I knew that who ever got my case would take one look at my age and deny me. Who knows if that is why I was denied twice already, but I'm just saying. So anyways in a months time, I should have a final answer.

I'm really nervous about it though. Because I know most people take one look at me and cant believe that I am sick. I mean my own Doctors tell me that I am looking very healthy and they know more about whats wrong with me than I do. I just hope the judge hears me out. Because if he denies me and my Dr has already deemed me disabled and unfit for work, I don't know what the heck I am going to do.  I am bringing in bills one on top of another.  I have medication that I can't, literally live without.  Unless I feel like playing roulette with my life and seeing if I throw a blood clot or not that day.   And God forbid I do get as sick as Ive been warned about, there will only be more bills. 

Now I have to figure out what to wear.  I read that while there isn't really a dress code, there are many do and dont's of the courtroom.  I was also give many tips from the transplant team as far as being prepared with notes of my conditions and reasons why I am unable to work.   So that just gives me more things to add to my To do lists, but its up at the top.  I'm getting butterflies just thinking about it.  I hope I don't cry.  Id be a mess.  I'd be approved on insanity!

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