February 28, 2014

Friday 5: Questions about my liver disease

I've kinda gotten away from why I started this blog in the first place.  Why?  Because I let someone make me feel guilty for putting my story out there.  I didn't start this for pity.  I wanted to share my story and show that I was going to live with this liver disease.  And I was going to live a good life.  To share my struggles, my happiness and my hope.

Right now I am stable.  There isn't much going on for the liver transplant patient part of me.  So I have been sharing the rest of whats going on or sometimes nothing at all.  I miss writing out my feelings and not expecting to be judged or criticized.  For the longest time I felt guilty for over sharing but this is MY blog after all right?  So if right now my dogs are the center of my worries, or the boys, or whatever, I am going to share it here.  Because I can :)

So in the spirit of getting back to not feeling guitly about my liver disease, here are 5 common questions that I get when people do get over the shock that I am 31 years old, on the transplant list and its not alcohol related!

How long have you been on the list?

I was listed with UNOS on May 25th 2010.  So this year I will be coming up on my 4th year on the liver transplant list.  According to my clinic the average wait time for a liver 6-12 months.  Now before you get upset or feel bad for me, know that I am ok with this.  Most days anyways. I have had 4 healthy years with my boys.  I have watched them grow, start school and become little men of their own.  I am thankful for the time I have had with them so far.  When time comes for my transplant, I know I will be in pretty bad shape and will most likely miss out on a lot of things.  So I will take all the good days I can get.  Even if I have to wait another 4 years.

When will you get a transplant?

My usual reply to this is "when I am sick enough to need one".  The list is based on numbers.  Not the way you would think though.  It is based on our MELD scores.  The higher your MELD, the sicker you are.  My doctors are very up front with me and have told me that for me, I most likely won't move up until one of my other organs starts to "scream".  Read Shut down. If it is my kidneys or my heart, who knows but going by how my disease is progressing, it will most likely be one or the other.  The blood flow to my heart is restricted and often as the liver fails the kidneys try to pick up the slack and in turn over work themselves. Isn't it amazing the way our organs all work together.  Liver disease is also very unpredictable.  I was told I could wake up one day, yellow and jaundice and my MELD could jump way up.  I could get the flu and my body just shut down because it can't fight it.  Or I can be stable for the next 10 years.  So when will I get my transplant?  I have no idea.

How do I find out if I'm a match for you?

As much as I would love to get this over with and get on the road to a healthier life, I would struggle...a lot with a donor liver.  Well I say that now that I am stable.  I know if my life truly depended on it and it was my only choice I would accept it.  But for now, not only would I pass, it just isn't an option for my type of liver disease.  My doctors have said that a donor would be a last resort in my case.  But just because you can't help me, please still register to be an organ donor.  And consider saving a life of a stranger or someone else you know. There are so many men, women and children who could have a live donor.

How did you know you were sick?

David and I went in for my big ultrasound and as soon as the technician put the wand on my belly it was written all over her face.  She made up an excuse about forgetting papers and returned with the Doctor.  I remember thinking, You have GOT to be kidding me.  After 2 losses and a preemie, I knew immediately that there was something wrong.  I am so glad that the problem turned out to be mine and not Alexanders. And I mean that from the bottom of my hear.  I would gladly take on any illness or problems if it meant my boys could be happy and healthy.  The doctor explained that my liver was enlarged and that it was most likely nothing to worry about but she referred me to a GI doctor just to be sure.  Dr H called me after my appointment and scans and said "I am very impressed by your liver" And I smiled.  Until he told me that it was because he has never seen one so large.  Damn.  He diagnosed me with Budd Chiari Syndrome and explained it the best he could.  Most of it was just a blur.  Huge liver. Clotted veins.  Chronic liver disease. What the heck people.  All I wanted to know was if I was having a boy or girl and within the week I was scheduled for every scan and test in the book.  Life hasn't been the same since.

Have you ever felt like giving up?

Are you kidding?  I have gone to some pretty dark places while I have tried to wrap my head around this whole thing.  One minute I was a happy expecting mom and the next I was a confused and ill mom who not only was at risk of losing my baby but of dying myself.  Now if you have ever been pregnant you know the emotions that run crazy though you anyways.  Add on all the stress and worries and yeah, there were quite a few days I just wanted to disappear.  But then I would realize that if I gave up, I was giving up on my husband and my son.  Not to mention the life that was growing inside of me. My boys have been my anchor though this whole storm.  Whenever I feel like I just want to run away, I look at them and they wash away all my doubts and fears.  My husband, I can't imagine not having him by my side.  Even though the first few years were insanely hard on our marriage, we are stronger now than ever.  I will never give up and I know my guys wouldn't let me anyways.  There are still dark days, but there is always a light at the end of the tunnel.

February 27, 2014

Happiness is ______ {2014-W8} #happinessis

Week 8 already?  Yup its almost March people.  MARCH!  There are still little reminders of New Years around the house.  Time flies!  You will have to excuse my day late post because I spent most of yesterday knee deep in paint.  Solar system projects are due tomorrow.  And our plan to get the kit and paint them didn't work out so well, because the paint was water based and would not stick to the styrofoam.  Oops. So we had to go back and paper mache them all.  But  now all we have to do is stick them all together now. I actually love doing them, but I am such a procrastinator and with soccer the whole first half of the week and adoption events on the weekends, time was just no where to be found. So anyways here we go.  

Happiness is a nice afternoon.  The Mr washing his car, the boys riding scooters in the street and me breaking open a brand new book.  


Happiness is a special gift for the dogs from an old friend.  Bark Boxes rock and the dogs loved it all.


Happiness is two boys getting along and having the funnies conversation.  All over a can of sardines. They asked me what kind of snacks I had as a kid and wanted to try it.  Go figure they loved it.


Happiness is this boy and his way with dogs.  Rambo is super gentle on the leash and we all had a good laugh when a lady ran to Anthony to help him because she was worried Rambo would drag him around. Anthony has such a calming effect on all the dogs.  He actually seeks out the stressed guys and gives them love.  He has a caring little soul and a heart of gold.


Happiness is lunch at the park and then running off some of their energy!


 Happiness is having to decide which book to start first!


Happiness is my nightly cuppa tea with my little one.  I have never seen a kid love tea as much as this one. He is always wanting to try a new flavor.  And he likes it straight, no sweetener!


Happiness is a kid who was nominated by a school staff member for a reward because he is caring.


Happiness is being one step closer to done.  Cant wait to clear my table off again!

After the day I had yesterday I needed this bad.  The water was steaming.  I closed my eyes and imagined I was back home on the beach.  Which is funny because I have bottles of the sand from there. I put my head underwater and was taken back to my days spent in the water. I never even opened the book.  But I was so refreshed and relaxed when I fell asleep last night!



What has brought you happiness this week?  Was it a phone call from a friend?  Something someone told you?  What ever it is, share it.  In a world with so much sadness, a little happiness goes a long way.  Hop over to Crazy Adventures in Parenting and see what others are happy about this week!  And hang in there. Its almost Friday!!

February 25, 2014

Now Reading: A little bit of everything!

Somehow I went from a one book at a time kinda girl to a read everything at once girl.  And as crazy as its making me, I love it.  Although I will admit when I picked up one of the books on Sunday, I read the whole thing.  Good thing I got the next book in the series.


Absolutely, positively by Heather Webber.  This is my new in between Stephanie Plum series.  I want to say I found this series under the Chic Lit section of Good Reads.  But I may have literally looked up series similar to the Plum Series to get my next fix.  And it worked.  I blew through the first two book and am trying to slow it down, because the library only has up to the third book. 

The Proper Care and Feeding of Marriage by Dr. Laura Schlessinger.  I'm still working on this one.  I got a little behind on my library books  last week so I had to finish them up first.  I actually did read though this one but am going back to a few things and re reading them.  I have gotten a handful of comments on how our marriage works and when I tell people, they usually go in to the whole "this is the 2000's and women need to step up for themselves" speech.  And I don't think that is wrong by any means. But I do believe that every marriage is different and no one book can tell us what will or will not work for all of us.

In Your Own Hands by Larry Berkelhammer, PhD.  This book was sent to me to read and review. There will be a giveaway as soon as I get though it too.  Last year Larry was a guest here and shared this great post Hope Heals.  I get a lot of people who ask how I do it.  How I take all the stress and worries and just keep on going.  His post hit the jackpot.  Because I choose to. I cant wait get though the book.  My highlighter is ready.  One of the plus sides of owning a book over checking one out.

Last but not least by any means, Prescription for Nutritional Health.  I saw this book on the shelf when I went to pick up some other books I had on hold at the library.  And as you can see from all the papers sticking out of it, I've already gone though and saved a few chapters I need to read.  Insomnia, Cirrhosis, Fatigue are just a few.  After a short summary of each condition there is a list of nutrients and supplements that will help.  And then recommendations as well as how to treat and help each one.  So much information. I love it.

So there you have it.  What have you read lately?  I wasn't always a reader but I am so glad that I am now!


February 24, 2014

Menu Plan Monday: February 24th

Its officially soccer season and with practice three days a week, things are going to get interesting with dinners.  Anthony can't handle anything to filling before practice and by the time we get home its 8pm and he is ready for bed.  I think next week I am going to pack him food to eat on the way home so he can just hit the shower and then bed.  But for this week, as usual, its nice and easy dinners.


TBD?  I still have no idea what I'm making for dinner tonight.  We are supposed to have practice, my fridge is just about empty.  So who knows. If we make it to practice we will stop by the store and pick something up on the way home.  Otherwise we will just have to skip practice and go shopping.  Fingers crossed for rain!!

I have been wanting to try the Steak Carnita Tacos forever but I swear there is never any flank steak when I need it. That is why I usually grab an extra pack when I do see it.  And that's also what I get for going to Walmart instead of HEB.  Because HEB has just about everything. 

Anthony will be learning how to make the sausage, rice and corn this week.  Its super easy.  Just something my MIL makes that my family cant ever seem to get enough of.  This week he will get to use a "bigger" knife to cut the sausage.  He will also learn how to make rice.  I love having them in my kitchen with me.

David has been bugging me for blueberry pancakes and since we are on our best behavior and trying to avoid fast food, this means a trip to Ihop is out.  I think I will make him help me. That would be fun. I think...



February 19, 2014

Happiness is ______ {2014-W7} #happinessis

If I was being 100% honest, I would say that at first I thought I was going to struggle with this post.  I have been beyond stressed, overwhelmed, bitter and flat out uh happy.  Its been a rough couple of days and I was thinking I would skip this week because I couldn't thing of happy stuff.  Then I scrolled though my photos and this is what I found. Happiness. 



Sometimes I get so annoyed when I have to have labs drawn.  Monthly, sometimes weekly.  I have to bother someone to take me there and then wait.  I'm so over it.  Like four years ago.  But Happiness is when the doc calls and says my numbers are perfect.


Happiness is knowing that even though there are days I would rock the heck out of a wheelchair, I am well enough to walk. Even if its only for short distances.  My energy has been hard to find these days, but so far its been pretty manageable.  


Happiness is fresh air and the smell of soccer :)  And also seeing this little guy boot the ball like a champ!


Happiness is a beautiful start to a day that was less than.  I don't know how many times I tell myself "at least the day started out beautiful!" 


Happiness is hospital cafeteria food. So often I worry that I scar the boys with so many trips to the hospital.  But they love it there.  It makes me sad that its such a normal thing for them.  But I am glad they are understanding and that they don't mind going.  Especially if Grandmas taking them to get some food.  


Happiness is trying a new place.  Even if it was awful.  I will just stick to my sausage and bean tacos.  But we actually tried something different for a change!


Happiness is having boys that love food I ate growing up.  So many kids turn up their noses to things like Musubi (rice and spam wrapped in seaweed), smoked oysters and octopus.  Its not very often we make them, but when we do, there are smiles all around!


Happiness is the love these two have for each other.  Chico is 13 years old. Hes feisty, yappy, grumpy yet full of love.  He hasn't been feeling so great lately and Poncho knows just what he needs.  Some good old cuddling!

Sometimes I just have to remind myself that there is so much more to be happy about than for me to fuss about. Yes sometimes I want to thrown my hands up and quit. I scream and cry and feel sorry for myself.  But even on the worst days, there is something to smile about.  Something that makes me happy, even if just for a minute.  Stop by Crazy Adventures in Parenting and share in the happiness!  

February 12, 2014

My #SA2020 Resolutions

I know I said no resolutions, but then Colleen from San Antonio Mom Blogs shared her Resolution to visit 20 parks this year, I thought it sounded like a lot of fun.  At first I was nervous to join because I had wanted to stay away from "resolutions".  But this was something that I could totally do.  So I signed up.  And joined Colleen.  Then I joined a few others just because.  Go big or go home?!  I have 10 and a half months to do it.  I got this...yes, I GOT THIS!


First up.  Resolve to visit 20 parks.  Because who doesn't love going to the park?  We do.  Mostly because its free fun.  And there is no shortage of parks in this city. We already have a few parks in mind but they are all on the other side of town.  That just makes it more of an adventure right!

Next.  Resolve to walk more.  Lord knows I need to do this.  My fit bit has logged more sleep what steps and that's saying ALOT!  I am not proud of that at all.  Plus poor Poncho is putting on weight too.  I guess its time to face his leash issues and work them out.  I miss taking him for walks.  We also just sold our playground from the back yard.  So now I will have to take Alex to the community park down the road a few times a week.  That should help too!

Third is resolve to volunteer.  I used to think that being a foster was enough for me.  But I need to step it up this year.  Today I put my big girl pants on and sent in my application to volunteer at the local shelter.  If you haven't noticed yet, I love animals.  My dogs are my family.  San Antonio shelters and rescues are over flowing and I want to help anyway I can.  I may be having a panic attack now though.  Did I really just do it? Yikes.  Excited but nervous.

It doesn't seem like to much right.  All things I had planned on working on anyways so it should be easy to just push myself a little more to make sure I don't slack off half way though the year.

If you are wondering what is SA2020 check it out here.  I will be honest.  We moved here in 2007 and I am just now falling in love with our city.  I used to think there was never anything to do here.  Big thanks to the amazing group of local bloggers who have opened my eyes to all that the city has to offer. There is always something going on.  I've always wanted to live in a close knit town.  Where people are friendly and always out and about.  Where my kids always have something to do, places to play and family adventures are never ending.  There is still so much Id like to see in our city and SA2020 just goes to show that I am not the only one who wants these things.  "A community vision for the future of San Antonio"  A future that my family will be a part of.

Happiness is ______ {2014-W6} #happinessis

Happiness is walking under this hoop every morning and feeling the need to jump and try to touch the net.  I dont know why.  Maybe its a short girl thing.  And the best part is when its lowered I can actually reach it!  I always smile when I go under it though.


Happiness is watching this boy and his imagination at work. Pure happiness. 


Happiness is knowing that the boys can live without their electronics and that I did not crumble under all the begging and bribery they tried on me.  


Happiness is snuggling up with these two and watching old school Disney.  Guess that movie!!


Happiness is Soccer.  We were freezing on the sidelines, but Anthony was so happy to be back in action!


Happiness is these three piled up even though everyone has their own bed.  When we left, they killed the bed.  It litterally exploded in my kitchen.  Happiness is also knowing to walk away and cound to ten. And sharing on FB and seeing everyone else get a kick out of it too! If you missed it, check out the after picture HERE!


Happiness is a hubby who knows when I'm having a horrible day and brings me home a soda and chocolate.  After a day like yesterday, I deserved a little caffeine!  Don't judge me :)


Happiness is found in all things big and small.  I like to believe that there is a bright side to everything. What made you smile this week?  Stop by Crazy Adventures in Parenting and see what is making others happy!  Much love.  Smile! The week is halfway over!

February 11, 2014

Menu Plan Monday: February 10th

I just realized I didn't share my menu last week.  Doh!  Don't worry, you didn't miss much.  We ate chili. For 3 days.  Why do I always make so much chili.  And worst of all, I forgot the crackers.  Yeah, it just wasn't my week I guess.

And now here it is, 15 minutes into Tuesday and I'm finally sharing.  I've been struggling to say the least. Having a hard time finding the balance between being sick and being a mom.  Rough.  But the show must go on and so here we go.  I figured Id keep it pretty familiar (AKA easy) this week.  There is only one new recipe in there because these Crock Pot Steak Carnitas look so good I just have to make them.



February 6, 2014

Happiness is ______ {2014-W5} #happinessis

In typical me fashion, I'm a day late.  But to my defense, yesterday was our anniversary and I was a little preoccupied :)  Looks like happiness once again goes to the dogs.  Its crazy how much happiness these guys bring into our lives.



Happiness is these treats being re pinned over 700 times.  I love that people are pinning and enjoying them.  


Happiness is watching the boys and David play football...in the house.  This is me letting go and not freaking out when they chuck a ball around the living room and occasionally knock things off the shelf.  Gotta love life with boys.  I'm finding happiness in their craziness.  Something I have struggled with before.  


Happiness is Great Dane feet warmers!  You should get yourself some of these.  They are great :)


Happiness is getting to hang out with another Dane, even if it was just for a while.  We have fallen in love with this Big Guy but he is a handful we just can't take on right now.  I hope he finds his forever home soon!


Happiness is this handsome fellow.  My good friend makes these adorable bows for the dogs at the shelter and brought me over a few to take to the Dane rescue!  Even though he couldn't sit still, he looks super cute!
 

Happiness is watching Anthony take the leash and be confident in walking Rambo.  Pack master in training.  Happiness is a family that loves dogs as much as I do.


Happiness is eating cookie dough.  I used to love sitting with my dad while he made cookies and licking the the bowl clean.  My boys will have the same memories!


Happiness is Winter.  OK so I'm more of a Summer girl, but I am enjoying this cold weather and all that has come with it.  I keep saying that if its going to be this cold it should just snow.  This is close enough!

Do you have a pet that brings you happiness?  Dog? Cat?  Hermit Crab?  If you are looking for more happiness, stop by Crazy Adventures in Parenting and see the happiness others are sharing!  

February 5, 2014

Dear David.

Today we celebrate our 10th anniversary.  I have spent the last few weeks trying to thing of something that I could give you that would help you see just how much I love you.  But there is no gift that I could buy or make that could ever be that perfect. And the only words I can come up with are Thank You.

Fifteen years ago you kept talking to me even though you knew I was mad at you.  To this day, you do this. Even when I am completely unreasonable, you always find a way to break down the walls I put up. Thank you for never giving up on me.

We were just children ourselves when we lost our first baby.  You never left my side.  You loved me through a second loss and promised me that someday we would have a beautiful family. You helped me though two more crazy pregnancies.  You trusted my choices.  Thank you for our amazing boys.

You push me to keep going when you see me giving up.  Thank you for also understanding when I just can't push myself any farther.

Thank You for always listening to me.  I love that even though I question you, you always hear everything I say.  Even when I mumble under my breath.

There are so many days that you come home to a house and wife that are a complete train wreck.  Thank you for coming in and giving me a kiss instead of running away.

I am always making you try things.  Thank you for doing things simply because I ask you.  I will never ask to to get on another roller coaster!

I love that you let me listen to my music in the car.  Even if you make fun of it, you know it makes me happy. Thank You for always finding new songs for me to fall in love with.

You always say its to hot to cuddle.  But still you hold me till I fall asleep.  And even though it drives you crazy the way my feet always find you when I sleep, you never move away.  Thank You for keeping me warm at night.

Remember the first time I told you I wanted a Great Dane.  I'm pretty sure you thought I had lost my mind. Again. And then I had the crazy idea to foster!  Thank you for letting me bring all these dogs into the house and falling in love with each one.  You know its important to me so you make it important to you.

After Anthony was born you saw how much I loved taking pictures of him.  You bought me my first camera and you have never stopped encouraging me to keep snapping away.  Thank you for supporting me and being my biggest fan.

Every morning you get up and go to work.  You bust your butt to provide for our family.  And you never give up.  Thank You for setting a great example for our boys on what it means to work and do what you have to do to take care of your family.

But most of all I want to Thank You for loving me.  I know I don't make it easy.  I come up with these crazy ideas.  I have big dreams.  I am stubborn as all hell.  I keep you up all night to talk about all the random thoughts in my head.  I hate cleaning.  I make you do your own laundry and drive me all around town.  I can be just a tad needy and grumpy.  There are days when I am just to sick to do anything and days when I cant stop. I am always asking you for massages.  I take things out on you even when they have nothing to do with you.  Sometimes I shut down and sometimes I cry.  And even on the worst of days, you love me still.  You find a way in.  You make me laugh.  You make everything better.  You make me better.

Happy 10th anniversary Babe.  These past years have been crazy and there is no way I could get though any of it without you.  I'm not promising that the next 10 will be any easier but I do promise that whatever life throws our way, we will face it together.  I love you always.