Friday 5: Confessions

This week seemed to just fly bye!  Or maybe it was just me being on a purging/cleaning roll that I didn't notice. Davids new schedule has him home earlier and so I spend more of the day cleaning while the boys are still awake.  As opposed to cleaning after they are sleeping.  And I know all you parents know that struggle. So if I'm on such a roll, why does it seem like nothings done?  I guess a moms job is never really done right?!

Confession time.

1.  I haven't written all week.  Why?  Periscope!  I haven't done a broadcast either, but I have been watching so many awesome people.  It almost feels like I went to all the places.  I was chilling with a girl on a beach in beautiful Hawaii just yesterday.  Then was on some big rock in Georgia with a couple of rock climbers.  Are you one Periscope?  If you are let me know so I can follow!

2.  I've only turned the TV on twice this week.  Once to play the PlayStation and once to watch a show.  What show did I watch?  Teen Wolf.  Don't judge me! I have the whole seasons of Deadliest Catch, The Astronauts Wife and Bones that I haven't even started.  Why do we still have cable?

3.  My Birthday is coming up and my wish list is so long that I feel guilty for wanting so much. Even more so knowing David will try to get me everything on it.  That's why I refuse to write it down!  He does know that I'm almost out of Scentsy and I want a table for the entryway.  But the rest is in my head.

4.  Davids schedule change has our routines a little out of whack.  It really is a good thing and I love being able to have him home before I get into bed.  But its an adjustment.  And I am struggling. I am crossing my fingers that he will be back to normal hours by the time school starts.  Bed time runs so much smoother when he is here.

5.  Remember how I prepped lunches for the week.  There are still two containers in the fridge. But, Not because I didn't eat lunch.  Alex has been making me lunch too.  And when your 6 year old tells you hes making you a plate...you take the plate.

Look how serious he gets!  And then he pats the turkey down all gentle like.  Ahh, this kid cracks me up.  And I love that he loves being in the kitchen with me. He even dances when he eats like I do. Last night it was just me and him in there making dinner and we had a blast.

When I was little Dad always had one of us kids in the kitchen helping him out.  And its one of the things I enjoy doing, now with my own kids.  

Do your kids help out in the kitchen?

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Friday 5: Five +1 reasons to adopt an older dog

Walter the foster dog may have found a home.  And the other night David and I were talking about our next foster.  He has got his eyes set on a certain dog.  He favors the 18 month range.  We have had all ages of foster dogs. We had an 14 week old and Walter is our oldest at 5-ish.  As for our own dogs, Chico is going on 15 this year and Poncho will be 5 this year too.

Poncho says " You show me who called you old" 

A few weeks ago while Walter was out at an Adoption Event, a kid walked up to him and asked about him. My heart about broke when the mom said Walter was to old and only had a few years left.  I really had to bit my lip to keep from saying something.  He is 5.  Yes for a Dane that is older, but not OLD!  I've heard of Danes living to be 12 and 13 years old.  And whats wrong with an older dog anyways?  He has by far, been the easiest of all our fosters!  Why?

1. The most common question I get is "Are they potty trained?"  Yes!  Most older dogs are already house trained.  No puppy pads and puddles on the floor.  So little presents scattered around the house.  I find that to be the hardest part about puppies.  They are messy little things.  Bigger dog, bigger messes.  And if they are not trained yet, say because they spent their life chained to a tree outside (just saying), older dogs are quicker to catch on.  


2. Chewing.  Enough said?  No one likes finding their favorite pair of sneakers shredded and in a pile of slobber.  Ever had to wrestle a 70lb puppy for a shoe the dog decided its a better chew toy for him than a shoe for the kid that has outgrown ever other pair of shoes you bought him?  Ever been woken from a deep nights sleep wondering why it sounds like someone is cutting a tree down only to find your kenneled puppy chewing on your window sills from between warped kennel bars?  Older dogs are done with that puppy teething stage.  They know bones are for chewing not dining chairs. 


3. Are you a napper?  Or maybe you have younger children?  Trying to put the baby down for a nap when the puppy is whining for your attention too.  Wait!  The puppy!  Where is that little thing? You put him in the kennel he cries.  You let him out to potty and when you let him back in he is peeing before you can shut the door.  Puppies are a full time job.  Yes the idea of your baby and the puppy growing up together is a fun idea.  But its like having 2 babies.  Are you ready for that?  We have all seen puppy energy right?  Older dogs are much more low key.  Much less energy needed.  And you will have a little more time to breathe and enjoy the new dog too!


4. Can you teach an old dog new tricks?  You better believe you can.  I find it has always been easier to teach the older boys things than any puppy I've ever had.  They have a more patience and know that when the treats come out its time to learn not time to play.  Which also helps get things done faster. Poncho learned "speak" in just an hour.  He also learned shake by watching the little one do it. Granted some dogs are more stubborn than others.  Just saying...CHICO!


5. You know what you are getting.  I can not tell you how many big dogs I have seen surrendered because they got this sweet little puppy that grew and grew. I kid you not!  I read once a lady was given the sweetest little hound dog.  Turned out to be a Great Dane and she needed to rehome him because he was to big for her.  With a full grown dog, what you see is what you get.    

And just because I love them so much, one more reason to adopt an older dog.  They need love too.  There are so many older dogs sitting in the shelter or getting over looked at rescue adoption events.  For what?  Do they not deserve to have homes too?  Or to be hugged and loved.  Imagine if we gave up on out human elders as people do to dogs.  Loving them for their last few years might be hard on you, but its worth it when you think of how much it must mean to them.  So when you are out looking for a new member of the family, don't pass up the older dogs.  Give them some love and let them show you some in return.  You wont regret it.

Have you adopted or fostered an older dog?  I know I'm not the only one who isn't crazy about puppies!

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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.

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Friday Five: 5 things I am Thankful for this year.

Black Friday just isn't for me.  Its far to crazy out there, so here I am.  Its almost 9am and everyone is still fast asleep.  Except for Chico the Chihuahua who is old and always up at the crack of dawn to go outside.  Anyways I wanted to take a few minutes and share some things I am thankful for this year!

I'm so thankful to have fallen in love with an amazing man.  He lets me listen to my music in the car.  He double checks to make sure they put cheese on my burgers when we go out to eat.  And he does his own laundry! He is one of the hardest workers I know and will always do what he needs to do to provide for his family. And he loves me unconditionally!  There is so much more but I know y'all don't want to hear it!

I'm thankful for the good health of my family.  My boys are growing like weeds.  They are strong and happy.  My mom quit smoking!  My sister in law just had major surgery for her Crohns and she is home recovering. Even though chemo is tiring, my Aunts tumors are shrinking!  And I am feeling pretty good!  God is good.  

I'm thankful for all that we have.  It may not be a huge house, but its our house.  It may not have much in it, but it is filled with love and memories.  And sometimes it feels like its not big enough for all of us, but we are together and that is what matters most.  We have two cars, even though I don't drive. I'm also thankful for the friends and family who drive me everywhere I need to go.  The boys have books and toys.  I'm thankful for the dogs as they are a big part of our family too.  

I am thankful that no one in our family is alone.  We are all with family this week.  My oldest brother came down to be with us and my little sister got to be home for dinner.  Mom is with my brother and his family.  Little brother has his sweet family with him.  And that my oldest nephew was home with my sister and their family.  And since my in laws only live two blocks away they were able to be here with us too. Such a blessing.  One of these holidays we are going to have to all get together!  Its on my bucket list!

And last but not least I am thankful for this blog.  I don't put much into it, but have gotten so much in return.  The friendships that have come from this are solid gold.  And the best part is that I have gotten to meet so many other bloggers, in real life and virtually that I cant imagine my life without.  For someone who is mostly home bound, that is such a blessing.  

OK that is way more than just 5 things but you get the point.  What are you thankful for this holiday season?  Are you able to be with family and friends?  

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Friday Five: 5 questions I get asked about my liver disease.

When people find out that I have a liver disease and I am on the liver transplant list the questions start rolling in.  Here are a few of the more common ones that people ask.

How did you get it?  

My Budd Chiari Syndrome was most likely caused by a hereditary blood disorder that I did not know I had. It causes my blood to clot easily.  It just so happened that the clots formed in my liver. There is a chance that I have had Budd Chiari since before I was pregnant with Anthony.  My father was tested and he too had the blood disorder (Prothrombin Gene Mutation G20210A). My siblings have a 50% chance of having it.  As do my boys.

Can't your liver just heal itself?

Yes the liver is the one organ that can regenerate itself.  When someone donates a part of their liver to another person, it will regenerate given time to heal itself.  For me, there is no break from the damage being done.  Scar tissue is building up and my liver is not able to reverse that damage.  

Are you scared? 

Hell yeah!  Plain and simple.  Being told that I could go from feeling great to a coma in a matter of hours has put a fog of fear over me. Honestly, not a day goes by that I don't think about it.  Every sharp pain or cold has me worried.  But I do my best to push aside the fear and I choose to live each day the best I can.  In the beginning, I was more afraid.  Add a high risk pregnancy and 5 doctors, yeah, I was a hot mess.  When he was born healthy, I was less afraid.  Now, I am able to deal with the fear so much better.  I know more and am more in tune with my body.  I'm not as afraid now, but its always gonna be there.

What is the cure?  

The only "cure" for Budd Chiari Syndrome is a liver transplant.  For me a living donor is not an option.  So I will have to wait for a cadaver donor.

How long until you can have a transplant?  

I have been on the Transplant list for over three years now.  And I have been pretty stable so unless something happens my guess is that its going to be a while.  My doctors have told me that as my liver weakens my other organs will be stressed.  And that eventually one of them will start to fail as well.  There is no way to tell if it will be my heart or kidneys, but that is their guess.  My MELD score has been in the 16- 19 range for the last year. With the highest score being a 40 and  the huge shortage of registered organ donors, who knows how long it will be.

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Friday 5: Me and Liver Disease

Liver Disease is a taboo subject to most people.  When I tell someone that I have a liver disease they usually think it is from drinking.  They they ask  if its from hepatitis.  No and nope.  When I tell them that I have Budd Chiari Syndrome they look at me like I am speaking Marshallese.  What is it?  How did I get it?  How to I cure it? Is there medication?  Here are 5 facts about me and Budd Chiari Syndrome!

1. Budd Chiari Syndrome is a very rare liver disease caused by a blockage in the hepatic veins that carry blood out of the liver into the heart.  For me it was chronic.  Over time as my veins were being obstructed my body created a web of veins around the clots. 


2. The most common cause of Budd Chiari Syndrome in the US is blood disorders.  This was the cause for me.  Shortly after diagnosis I also found out I had the Prothrombin Gene Mutation which makes my blood clot much easier than normal.  This was passed down to me from my father who tested positive after I was diagnosed.  My brothers and sisters as well as my boys have a 50% chance of carrying the gene as well.  But no one else has been tested yet.  


3. I had no idea I was even sick.  My severely enlarged liver was discovered when I went in for an pregnancy ultrasound.  As my belly grew, the pain got worse and I was retaining a lot of water.  Now days, the pain comes and goes.  When its bad, its pretty bad.  The encephalopathy is what gets me.  The most common symptoms are ascites or fluid build up.  Pain in the upper right abdomen.  Nausea, weight loss (none of that here), vomiting blood, enlarged spleen and edema (swelling).  I've been able to hold off a lot of swelling with a low sodium diet thankfully because I don't need any help in the puffy department.


4. There isn't an easy fix for this one.  The only way to "cure" it is with a liver transplant.  Until then, my body will work as hard as it can until it just cant anymore.  But eventually my other organs will fail.  This will bump me up on the transplant list and get me closer to my new life.  But for now, its a low sodium diet, exercise, blood thinners and other meds that keep me going.  


5. What if.  What if I never knew.  It was by luck that I found out.  I had given up all hope of getting pregnant again.  So what if I never was diagnosed?  Well when I was diagnosed and all my problems with past pregnancies were discussed, my doctors all agree that I probably had the clots back when I was pregnant with Anthony 3 years prior.  What is the life expectancy of someone who is not treated? Three Years! I was hanging on my a thread and I had no clue. Long term survival following a successful complete liver transplant is between 69 and 87%.  I can handle that!

Every day I open my eyes I thank God for giving me the chance to enjoy one more day.  Life is a gift.  Don't take that for granted.  Love the people that love you.  Forget the ones that don't.  And if you haven't yet, register to be an organ donor at Donate Life America!  

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Friday 5: Five things I miss most about my Dad

In a few days my heart will break all over again. Its hard to think that he has been gone for a year already. Maybe it feels like shorter because I still hear him correcting me over my shoulder when I cook or because my boys ask about him so often that it almost feels as if he is still here on earth.  One year.  Ten years.  The pain will always be the same.   I miss my daddy more than anything.  Not a day goes by I don't think about him.

1. I miss calling him at work.  Hearing "Communications.  This is Jim"  As we would talk I would picture his office. The money jar we would take change out of to buy something from the vending machines when we visited. The walrus "bone" that he was so proud of.   The emergency cigarette in a glass case.   Photos of us kids pinned up.  The smell of the office.  It was one of my most favorite places.  And for so many reasons.  He loved his job.  Losing it ate him up inside and I know it played a big part in his health failing after he left.  
2. I miss the Summer Vacations.  There was nothing more that this man wanted than to spend time with his kids and grand kids.  He had all these plans of places we could visit.  A few days before he passed we were talking about it all.  He said he would be better before next summer and then we would plan something big. Only its Summer and he is not here anymore.  It has been so hard to accept that.  
3. Dad sent the BEST care packages.  So much of what we have around the house, came wrapped in pages of the Kwaj Hourglass.  The boys bust out their Kimonos just about every day.  Alex prefers his snacks to the rice bowl Grandpa Jim gave him.  My little jewelry box.  The Marshallese Handicrafts around the house. Quite a few of the spices in my pantry.  I still have unopened sauces and things he sent that I have yet to use.  Not sure if I ever will be able to.
4. As much as it may have drove me crazy.  I miss hearing him say "Of course they did that!  They are boys" That was his answer to everything.  That and "well look at who their grandpa is"  I would roll my eyes and then laugh because its was true. I would always feel better after hearing him say that. Now it is what I tell myself.  When there are underwear hanging from the fan or they are acting up.  I take a deep breath and remind myself that they are just boys.  And when they comment on the weather or critique my cooking, yup...they hare his grand kids!
5. When it came to hugs, nothing could compare to his.  Not to soft and not to tight.  Just enough for you to know that no matter how complicated our lives were he loved us.  He would squeeze tight at the end and when he turned his head his beard would tickle my face.  Always followed by a kiss on the cheek.  I think this is what I will always miss most about him.  What I wouldn't do for just one more hug!

This week has been unbearable.  I have not been myself. Today the puppy chewed Alexs sneakers up.  The ones Dad bought Anthony and now Alex was wearing.  I have never cried over a pair of shoes before but these ones were special.  Then I imagined him telling me that they are only shoes. I will buy him another pair.  

Some days I am so angry that he is gone.  That he is missing out on our lives.  I wont get to tell him about Alexanders first day of school.  I won't open anymore packages in the mail.  No more hugs. I wont ever hear him laugh.  But I like to think that now, he can see it all.  That he sees all of us and all we are doing.  I think that he is happy when we are happy and sad when we struggle. I think he is still proud of us when we do the right things.  I know he would have a lot to say about how broken we have been without him.  I am hoping that this next year will be easier. I've been told it takes time.  That it gets easier.  I will try to remember that!

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