Three things! #HAWMC

Day 29 (April 29) – Congratulations

We all know Health Activists are awesome. Share three things you love about yourself, things you’re great at, or just want to share. Don’t undercut or signpost!

1.  I have hope.  Sometimes I lose sight of it, but never for long.  I grew up in a family fueled by alcohol and abuse.  I've been heartbroken.  I had 2 miscarriages and made it though two high risk pregnancies.  I've traveled the bumpy road called marriage and am better for it!  I lost my father to cancer.  I was diagnosed with 2 rare diseases that will haunt me for the rest of my life.  But through it all, I am still smiling.  I still have faith in myself.  I got this!

2.  I try.  I used to always get so frustrated when I was younger.  When I couldn't do things or didn't think I could, I would give up or avoid them.  My dad always told me that I at least had to try.  It may have taken a lot longer than I had hoped but I am finally learning how to put myself out there.  Try new things and not give up at the first sign of defeat.  This writing challenge has been so much fun, but I get behind. This weekend none of my posts posted.  One I accidentally deleted.  But I am determined to follow though.  Unlike the last two years.  Even if I am missing a day somewhere!  Life is hard, but we owe it to ourselves to try and do our best and live it to the fullest.

3.  April is Donate Life Month.  And it was sorta taken over by this challenge.  I'm a little bummed that I didn't share more about it, but I have a few posts already scheduled for the upcoming weeks.  Every month should be donate life month anyways.  There is also a little video in the works.  I'm just trying to get it all together and then I will have to find the guts to share it. 

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Giving in to the pain #HAWMC

Day 26 (April 26) – Pain-Free Pass

What’s a day that you wish you could have used a pain-free pass (either in the future or the past)? How would being pain or worry-free impact that day?

Even before I was sick I was always worried that I was would let my son down. And then when we found out we were expecting another I worried even more. Then I was diagnosed and was told that I was only going to get more sick. And I remember saying to myself that I would never let my sickness come between me and my boys.  I had no idea what I was in for. 

I can't even remember now, what he wanted to do. But I remember that I was lying in bed. Exhausted and in pain. Nursing a newborn.  I was hoping that he would just lie in bed with me and watch a movie. Anthony was 100% sure that he wanted to go outside and that insisted I go too.  After explaining more than once, the anger on his face turned to hurt. I saw it wash over him like a wave.  I had let him down and he didn't understand why. 

"You never play with me anymore, all you do is lay down in bed with the baby"

Ouch!  These words stung like a thousand bees. Broke my heart in to a million pieces and left me feeling like the worst mom in the world.  Slowly but surely my illness had taken bits of me away from my boy. I didn't see it, but he sure did. Just thinking about his face that day brings the tears right back up.  I let the pain win. 

It was a long time before I was able to forgive myself for letting myself be sick sometimes. Every time I tell my boys that I am to sick or to tired, I remember those big brown eyes filling with tears.  I question if its worth breaking their little hearts to lay in bed or if there is anyway I can work around it.  But the fact is, I am sick.  I am going to have days where I just cant and they are not going to understand it.  Not yet anyways.

I would give anything to go back to that day and have the energy to say yes to him.  To take him for a walk or play out back.  I wish I would have just sucked it up and played with him.  Given him one more day of getting just what he wanted.  One more day to be the center of attention. One less day with a sick mom.

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Tweet that! #HAWMC

Day 28. Create a must follow list for your community on a single social network. Share your top 5-10 tweeters, blogs, or Facebook pages.

Are you on Twitter?  I am!  @Kmunoz28.  I love Twitter.  Although I admit, I have been slacking in being social there lately.  But in an attempt to get back into the swing of things I want to share with you a few amazing tweeters!  There are probably some familiar faces in here because I have shared them before.  They are just that awesome!  Here is my list of Organ Donation must follows!!

@RachieB15 This chick right here!  She used to be RachieB but thats Mrs.W now.  Amazing is what she is.  Rachel got her liver transplant in 2009.  She is a pediatric nurse.  And is also a big deal on YouTube with her amazing make up skills and clothes!

@agoodwin2010  Amanda had a life saving liver transplant in 2010 after the disease she had been living with for 18 years had finally progressed enough for her to get her new liver.  She is like the peek of sunshine on a cloudy day.  Always looking on the bright side.  

@forever_trust  Paula is one tough mom!  On top of being a spoonie herself.  Her daughter Anna was born with Maple Syrup Urine Disease and just received her new liver last September. Someday we are going to be neighbors!  If she ever moves out of Michigan.  To cold up there for this island girl :)

@liver4scott  Scott is a father who was save by his son.  Through a living donor liver transplant.  May 2012.  His love of his family and of Jesus is so easy to see.  And I can't help but smile when I see his updates as they are always uplifting and so positive.  Just 138 days after his transplant he rode 10.14 miles in the "Not dead yet"  ride to battle cancer!  And now he is talking about a 25 miler.  Such an inspiring man!

@rickisjourney  Ricki is a 2x transplant recipient.  She is also a wife and a mother who knows how to fight like hell to live.  She was one of the first people to give me a good heads up on liver disease and then life after transplant.  She didn't sugar coat it and told me straight up what she was dealing with.  Love her for it too.  

And for a few charities and organizations that are a must follow.

@DonnasDream  Campaigning for Transplant and Organ Donor Education in Schools in Memory Of Donna Mansell who died waiting for a Heart Transplant.

@DonateLife_  Tweeting on behalf of Donate Life America. Educating the public about the importance of registering as organ, eye and tissue donors. www.donatelife.net

@couragehopelife  Restoring Hope Transplant House is a non-profit home for transplant patients and caregivers while in the Madison area for life-saving care at nearby UW Hospital

@Save8Texas  A signature pledging your desire to be an organ donor can save the lives of eight people. Register today and be someones hero.

@TXLiving  No matter where you are in the transplant experience, Transplant Living can help you be prepared.

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Wordless Wednesday: 3 Pins #HAWMC

Day 24 (April 24) – Wordless Wednesday

Create a Pinterest board for your health focus. Pin 3 things. Share the image.

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No Social Media?? #HAWMC

Day 23 (April 23) – Technology

Write about how your life would change if there was no social media. 

Today’s post was recommended by Christina of www.stickwithitsugar.com

No Social Media??  Oh boy, that would be a tough one for me.  For me, someone who is almost home bound, some days social media is my only link to the outside world.  When I started this blog I had no idea how many friends and how much support would come from places like twitter and Facebook   And now if you take away things like Instagram and Pinterest  Id be left to my own imagination.  And while that is perfectly fine, I really would miss it.

I have tried very hard to stay in touch with all my old friends and new ones too.  But in this world, we no longer send letters and talk on the phone.  We post on walls and comment on their photos.  We don't sent pictures or even email the way we used to.  Its almost all done on one or more social media sites.

Last week, I questioned the sites of my Lovenox injections.  My Dr was OK with where I planned to do them, but I was curious about what others who have done them thought.  So I turned to a Facebook page for other patients taking blood thinners and they all assured me that my stomach was the way to go.  They were right.  It was hard the first time, but its my new place!  I often wonder things like am I the only one who gets headaches when my INR is high or the only one experiencing hair loss even thought the Drs say it is not a side effect of my meds.   I know have an outlet to bounce these questions off of and talk to others who are dealing with the same issues.  No, social media is not better than asking your Dr.  But as much as they can be an expert on a condition, if they have not lived in your shoes, they don't understand it 100%.

And without this blog I would have still been all alone in my fight against liver disease and Budd Chiari Syndrome.  I started out feeling like I was the only one in the world with it.  Now I can say that thanks to social media, I am no longer alone.  None of us are.  

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A fight worth fighting #HAWMC

Day 22 (April 22) – Day to Day

Write about something ordinary that’s inspiring to you, something simple, perhaps overlooked, that fuels your activism. Today’s post was recommended by Abigail of http://hiddencourage.wordpress.com/

This past week I have been constantly reminded of how blessed I am.  I have had so many people step up or reach out to me and it really means so much to me.  You know that feeling when someone does something  for you and no matter how simple it is, it still leaves you smiling all day?   Its been one of those weeks.

Thursday I started my Lovenox injections again.  I am having some dental work done and so to minimize the bleeding I switch over to the shots.  Sounds like fun right.  Twice a day self injections.  I've done them so many times that I have outgrown my fear of needles.  However my thighs are filled with scar tissue now and the thought of poking my stomach just scared the daylight out of me.  So one day on the way home I asked my friend if she would do them.  With out hesitation she agreed.  And David took the weekend shift!  I managed to do a few in my belly and now am more comfortable with it.  I let the fear stop me but they were there for me when I couldn't be there for myself!  

A few days earlier, I received a phone call from a friend who went on to tell me about how she woke up and thought of me.  She said she wanted to bring me over something and later that day she gave me a paper with a list of healing scriptures.  The very same ones she said with her mother who was hospitalized and is now doing so much better.

¹⁴ Is anyone among you sick? Let them call the elders of the church to pray over them and anoint them with oil in the name of the Lord. ¹⁵ And the prayer offered in faith will make the sick person well; the Lord will raise them up. If they have sinned, they will be forgiven. - James 5:14-15

I have also received a handful of emails from the blog from others who have been diagnosed or have had a love one diagnosed recently with Budd-Chiari Syndrome.  I remember in the beginning feeling so alone.  There was no other blog out there who talked about live with BCS.  No one to compare and talk to. No one who could inspired me and help me.  I was alone.  So when I get emails that say things like "Thank You from the bottom of my heart for writing this blog" and "I have so many questions about how you manage day to day life and what you eat and drink."  This is exactly why I do this.  I don't write for comments or pity.  I write because somewhere out there is someone who is new to the club and all alone.  Because that person can only read so many trial papers before they are scared out of their minds and believe that there is no way they are going to come out of this fight alive.  I talk about it because no one else is but everyone needs to know.

These are the little things that keep me going.  Knowing I have a family and friends to fight for.  That I have people who honestly care and want to help me though this part of my life.  Because if I can help even just a handful of people know that they are not alone and that this is a fight worth fighting, it will all be worth it.  

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Adversity #HAWMC

Day 21 – Adversity

“The flower that blooms in adversity is the rarest and most beautiful of all.” – Mulan True or false? When do you bloom best? Today’s post was recommended by Christina of www.stickwithitsugar.com

True!  Its amazing how far I've come in a life that I thought was going to be to hard to live.  Around every corner of my life has been some sort of conflict.  And after each one I have only come out stronger.

I made it though a childhood that was hell fueled by alcohol and abuse.  I am 13 years into a relationship that I wasn't even sure I deserved.  After years of infertility and loss, I am the mother of two beautiful boys.  And now I am living with a liver disease that very well could take my life. But I have 100% faith in my fight.  I know this too will be another mark on my path.  Because of it, I will only be stronger.

Through all the hardships I have come though, I know I am only stronger because of them.  If I had come from a privileged childhood, I don't think I would be able to handle the struggles I faced when I left home.  My two miscarriages were heartbreaking but have taught me to cherish my babies here with me today.  My  marriage has taught me to fight for what I believe in and that with love, all things are possible. Hows that for blooming!

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Burnout

 Day 20 (April 20) – Burnout

Write about burnout. What does it feel like? What are your burnout triggers?

The worst feeling in the world is being defeated.  Well clearly not the worst, but at the time, it feels like it.  Ask anyone with a chronic illness and they will have a few stories to tell you, I'm sure of it! Its amazing how much we push ourselves.  Just for the chance at feeling normal or healthy again.  But when push comes to shove there comes a time when we just cant!

For me, weeks like this one are the worst.  A change in my meds had me all nervous and scared. Money is tight.  Alex was sick.  I have two appointments coming up.  Or I did until the liver clinic bumped me.  And I have been pushing myself to stay on top of my diet and exercise.  Then I question my fatigue and push even harder.  Only to be knocked on my butt.  Tonight I am burnt.

Today, patience was gone, my voice was louder, I have cried watching the news, and I have put myself down.  I'm tired.  Beyond that, I am exhausted.  So much that I am going to cut it short and get ready for another insane day.  One that I really want to enjoy.  That I will enjoy.  But one that will leave me even more tired than today!  And I'm sure I will do it all again next week!

Anyone else over do it?  What burns you out?

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Who I am and who I want o be

Have you ever watched a video of yourself and though, who the hell is that?  The other night I was doing a little workout while Alex laid in bed.  He was busy taking video of himself and laughing away.  I was busy sweating up a storm, but I couldn't help but smile at him being so silly.  Until he said he was going to take video of me.  Lord help me, the last thing I needed to watch was me doing jumping jacks.  Shudder!

When he turned the camera towards me I jokingly reached toward him and hit the bed.  I grabbed the phone out of his hands and turned the camera on him.  Of course being the silly boy he is, he was laughing and playing along.  But when I watched the video, I was terrified by what I saw.  I looked so mad and angry. I literally scared myself.  Then I just felt embarrassed and guilty.

I have been trying really hard to be nice and calm with the boys.  But between a 7 year old who has a mad case of the "smart mouth"  And a 4 year old that just now hit the terrible twos...yeah.  Some days I feel like I yell more than anything.  And that just breaks my heart.  I don't want to be that mom.

Its pretty clear to see that I love my boys more than life itself.  But seeing myself look like a mad woman, even though we were just playing, was like a slap in the face.  I need to get my stuff together.  Before I know it they will both be in school and I will be here all alone.

Tonight Alex is spending the night at grandmas house.  And I am sitting here in bed realizing just how much I miss that crazy boy.  After Anthony went to bed, the house was silent.  I'm laying here alone.  No little feet tickling me.  No begging for my phone.  Just silence.  And I hate it.

I'm going to look at it as something to reflect on.  A reminder to take a deep breath and enjoy the bad with the good.  I know I am blessed beyond stars.  Without my boys I'd be lost.  Sometimes we just need a little reminder to step back from the every day routine and shake it up a bit.  Have some fun.  Relax and enjoy each other.  Tomorrow is a new day!

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Wordle-ss Wednesday #HAWMC

Day 17 (April 17) – Wordless Wednesday

Go to http://www.wordle.net/ to create a word cloud or tree from a list of words associated with your condition, blog, or interests. Post it!

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Organ Donation: 3 Truths and a Lie #HAWMC

Day 16 (April 16) – Misinformation

Tell us 3 things that are true about you, your condition, or your Health Activism. Tell us 1 lie. Will we be able to tell the difference?

Bonus points – share your 3 + 1 as a poll on FB. Share the results!

Its amazing how misinformed so many people are.  Most people are shocked by what the myths and truths are when it comes to organ donation.  I love being able to correct them and help them see the truth.  So I was really excited when I saw this prompt.

I put up a poll on FB, doe's that make up for my missing post yesterday?  Oh you didn't notice...never mind then!  Moving on.  So the poll.  Here is what I asked.

3 truths and a lie. Can you spot the myth?

	Organ donation is consistent with the beliefs of most religions.	+2
	The organ donor’s family is never charged for donating	+2
	You may not be healthy enough to be an organ donor	+3
	There’s no defined cutoff age for donating organs.	+1

So which one is the myth?  #3.  Lets recap

Most religions believe that organ donation is a gift and a very great thing to do.  I did read that the Shinto think that "injuring" a dead body is a crime and it is very hard to get consent for donation.  And was also told that there are other African religions who believe that the body must stay whole to make it to the afterlife.  But most are all for it and say it is an individuals decision.

There is NEVER a cost to the donors family for donating.  The donors family and insurance is only accountable for charges before death.  There is no charge for donating!

There are very few conditions that will disqualify you from being an organ donor.  But that call is to be left to the doctors.  I know my liver is in no condition to be donated, but what about the rest of my organs.  And then there is all so your eyes and tissue that might be OK to donate.  Don't take yourself out of the game yet?

Its not a question of being to old or young.  Its a question of how healthy the organ is.  I have read stories of Organ donors in their 80's.  To their children who are in their 50's.  There is not a cut off date any where that says you must be under this age to donate.

So, keep those organs healthy.  And be sure to register with your state as an organ donor.   Much love and thank you to those that took the time to vote!!

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Taking some time to say Thank You! #HAWMC

Day 14 (April 14) – Spread the Love

Thank a few of your fellow Health Activists for what they have done. Call them out by name or twitter handle. Share your love.

Today is a good day to say thank you to a few friends who have come into my life just when I needed them. These ladies have always been full of inspiration and support whenever I needed it.  Like virtual shoulders to lean on.  I had no clue that this blog would bring me a whole new kind of family.

This mom is amazing.  I can always count on her to reply to my crazy twitter rants.  She gets my sarcasm and her daughter Anna is my hero.  She was one of the first people to reach out to me when I started sharing my life on the transplant list.  Paula is the blogger behind Our Transplant Journey.  Following their road to Annas liver transplant.  And now the road after transplant   Anna got her new liver in September last year and I am beyond happy for her.

Jamee from A New Kind of Normal is one strong and amazing lady.  She has been though just about everything imaginable and always comes out fighting.  Through her blog I have found so much hope and inspiration.  If you have read any of the "Sharing our Spoons" posts, that is all Jamees doing.  I have so enjoyed doing them too.  They give me a sense of direction and goals to reach for.  Thank You Jamee for being such an inspiration to not only me but so many others out there dealing with Chronic Illness.


Rhiann over at My brain lesion and me is a great example of what a Health Activist is.  She shares her life with a long standing brain stem lesion and spastic paraparesis.  She starting blogging in hopes of finding someone else out there dealing with the same diagnosis.  Sound familiar?  To me yes.  Rihann is amazing at making me not feel alone out in the crazy world of Chronic illness.  I usually stay in touch with her on twitter but I stopped by her blog recently and saw that she has started a spoonie book club.  This has my name all over it!!

Ricki was one of my very first liver buddies.  And there are not even great enough words to tell you all how amazing this woman is.   She is a wife and mom and a TWO time transplant recipient.  She answered all my questions and was always there for support when I needed it most.  Her blog Rickis Journey is full of information and advice for those of us dealing with liver disease.  These days shes not on twitter as often as she used to be, but guess what, that makes me happy!  Because she is out there living her life to the fullest.  I still keep in touch with her mostly though FB now.  Seeing pictures of her and her family now give me the hope and faith in life after transplant.  She is such an inspiration and I am blessed to have found her!    

My sister from another mother!  When Marissa first reached out to me about being featured on her 12-12-12 project, I cant lie, I was thinking, is this lady for real?  A year later, and I can tell you with out doubt, this chick is legit.  Last year, she decided to focus a whole year to learning about others conditions instead of her own.  Last February, I was featured on her blog Abledis.  And all year long I was blown away by the time and effort she put in to learn and share each new diagnosis with us.  When I say I love this girl, I mean it.  She sends me random messages to let me know that she is thinking of me.  And she rocks my Hope for Kim bracelet like its a Rolex!  She does so much all while dealing with her own hidden disability.  Amazing!

I just want to say thank you ladies for always being here.  Your never ending support means the world to me!  You are all so wonderful and I am so blessed to have found you. You are doing so much for our health community!  I can't say it enough, THANK YOU!!  

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Acrostic Fun

Day 13 (April 13) 

Write a health acrostic for your condition, hashtag, or username! 

B. bilirubin
U. upper right quadrant
D. damage
D. doctors

C. cirrhosis
H. hepatic encephalopathy
A. ascites
I. inferior vena cava
R. rejection
I. inr

S. spleen
Y. yellow
N. nurses
D.diuretic
R. rare
O. organ donors
M. mri
E. esophageal varices

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One thing I have learned as a patient. #HAWMC

Day 12 (April 12) – Hindsight

What have you learned about being a patient/caregiver that has surprised you most?

I have learned so much since being diagnosed almost 5 years ago.  But one thing I have learned and I think is most important is that even though our doctors are here to help us get better, we have a say in my care.  Growing up, it was Drs. orders and no questions.  Sadly, we had a doctor that would recommend eating yogurt as his medical advice.  From depression to broken bones.  I kid you not.

Five years ago, suddenly I was being diagnosed with this and that.  They were not just small issues.  These were illnesses that were going to change everything about the rest of my life.  Names, tests and numbers were being thrown around from Dr to Dr.   Until one day I had to just stop them all and ask them what the hell they were talking about.  That was the day I learned I was part of the team too.  My concerns and opinions were just as valid as theirs.  I had a voice and that was allowed.

I have been very blessed with doctors that are willing to listen to all my questions and concerns.  For the most part they are very thorough but there have been times when I have had to question them.  I made a decision not to do a test that one doctor told me I needed based on my other doctor explaining why I didn't need to do it.  Yes it caused a bit of an issue with the doctor but I have not ever regretted my decision.  And have been told more than once that it was the right choice.  What I am getting at is that your health is in your hands as much as it is in your doctors.

Make sure you do all that you need to do to understand what is happening.  Research. Familiarize yourself with your medications and their side effects.  Before you take tests, ask that your doctor explain why exactly to need them.  Let your spouse in on it all and get their opinion.  Reach out to others who are going thought the same thing as you.  Living with a chronic illness is not a one person thing.  Its a team thing.  Your doctors, you and your family.   Its not only up to your doctors to help you, you have to help yourself too!

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There's an app for that! Part 2 #HAWMC

Day 10. Favorites

Write about your favorite health iPhone app? Today’s post was recommended by Lori of http://misdiagnosedme.wordpress.com/

Team Android here. Just saying.  There are a few apps that I use daily. Or try to.  The past few weeks were rough but I'm hoping that by the weekend I will be back to myself again.  And that means back to my apps.

This is what my home screen looks like.  The top four apps are my "healthy" apps.   Pay no attention to the second row.  That's the fun stuff!

First up is Daily Miler.  I use this app as a bridge to update my Daily Mile page.  I usually set a goal for the month and this is just a way to track them.  You can also log in online and enter in route you ran or rode. Plus you can add friends and find a ton of inspiration to keep you moving forward.  

C25K.  I'm sure many have heard of this before.  Its also called couch to 5k.  I stopped at week 5 but now that I shared that with yall, I am going to go for a run after I post this!

My Fitness Pal.  I love this app.  I keep track of everything I eat and drink.  Its very often that I enter something that isn't in there already.  And you can just scan the bar codes to enter things too.  At the end of the day you can see how you did. How many calories, fat, carbs and what not you ate.  I recommend this app all the time.  And you can log in online too.  

Fooducate.  I didn't think I was going to keep this one at first but the more I used it the more I fell in love.  Even my boys ask me when we shop to scan their snacks and see its grade.  Its so easy!  Scan the bar code and find out the information.  Its graded A-F.  It tells you why something is good or not good and even gives you an alternative.  Love it.

What are you favorite health apps.  Or any app for that matter.  I am an app-addict!  First step is to admit it...

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Am I doing this right?? #HAWMC

Day 9 (April 9) – Caregiving

As a parent with health conditions, what do you hope you’re doing right?

"Am I doing this right?"  I ask myself this at least once a day.  I second guess everything I do. From what I am feeding them to how I discipline them.  And I can only hope I am doing half of it right.

Parenting is hard enough as it is.  Parenting while living with a chronic illness is just exhausting. They say the best thing you can do for your family is to take care of yourself, but when is there ever time for a mom to take care of herself in the first place.  I don't know if there is one specific part of parenting I hope I am doing right.  Some days I feel like I am super mom and other days, I swear I am doing it all wrong.

There once was a time when I was the strict mom.  The mom who refused to let her kids have candy or even a drop of soda.  Who fed her kids perfect meals on time and who said her kids would not have electronic devices until they were at least 10.  Then I got sick.  I didn't have the energy to say no.  Meals don't always get on the table right on time.  And I will admit that my kids love their electronics far more than I would like them too.   But it all gives me a few extra minuets to rest or get things done.  Compromise right?

What about when it comes to explaining to the boys just how sick I am?  Yesterday at soccer practice, I started to feel a little faint.  And my very first thought was, How I was going to get to the restrooms in case they called an ambulance.  I don't want Anthony to see me get loaded up and taken away.  And especially not in public.  I had it all planned out.  I was going to ask on the the other parents to walk me over to the street and away from his view.  Could I really hide this from him?  I just didn't want to put him on the spot like that. These are the kinds of things that run though my head all day now.

I am suddenly feeling really guilty about so much. Should I have been as honest as I have been? It is hurting Anthony to know that I am sick, should I have shielded him from it all?  This is my the part that gets me the most.  The part that keeps me up at night.  I have answered almost all his questions with complete honesty.  He asked me to promise once that I wouldn't die and I changed the subject.  I would have for him to be angry at me if God forbid something went wrong and I didn't make it.  I want him to be aware of what is happening but I don't want him to worry any more than he already does.  I don't know if there is a right or wrong way to deal with this, but I know if there was, with my luck, I've got it all wrong.

Alexander is 4 now.  I have explained to him that he can not climb on me or that I cant carry him because I hurt, but he hasn't really questioned it.  He pretty much just expects me to suck it up and pick him up.  Hes quite the kid that boy.  But I know the day will come when he starts to ask questions and I don't know what I am going to do.  If I have messed one kid up I don't want to do it again.  But how do I keep him in the dark when everyone else already knows.  What am I going to do?  I have no idea, I just hope I do it right.

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The animal in me...

Day 8

If your health condition (or the health condition of a loved one!) was an animal, what would it be? Is it a real animal or make believe? Today’s post was recommended by Christina of www.stickwithitsugar.com

There are so many animals that came to mind.  I really wanted to think of something good but I couldn't settle on one so I went though a bunch of my zoo photos and I think I got a good one.

If liver disease was an animal, it would be....

A snake.  Liver Disease is a snake!

I think that a snake fits, especially for my Budd Chiari Syndrome.  There I was just going along and BAM, there it was.  Snakes are scary.  Their bites pack a punch are are painful.  And they just lie there and wait for their prey to come along and then hit them out of no where.  This pretty much sums up my journey so far.

One day I was happy and pregnant and the next day, I was not sure if I was going to make it.  Turns out I had actually been sick for a while, but I just didn't even know it was there.  Like the snake that is hiding just waiting to strike.

Liver disease is unpredictable.  It can be treated (only by transplant) but if left untreated it is deadly.  In my case, it is chronic, it has been sitting there unnoticed for years. And even now I'm living each day just waiting for it to jump up and bite me.  When it hits, I've been told its going to hit hard.  Its going to hurt and slowly its going to affect my other organs.  My body will start to fail.  The venom with flow though my bloodstream eating away at me from the inside out.  Liver Disease is a snake.

*Snakes are one of my greatest fears yet I am so mesmerized by them.  Whats with that?*

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Menu Plan Monday April 8-13

Its the start of another week. Joy!  Can you just feel my sarcasm excitement.  Seriously though, last week was a rough week for me.  I haven't felt that bad or had that much pain in months. You know its bad when I start popping open the meds.  First it was fatigue.  That turned in to nausea and then came the pain.  By Saturday night, I was ready to throw in the towel.  But stuff has to get done.  And I think I am coming around a corner.  At least I hope I am because this week is going to kill me.  Now to get to the whole point of this post...Menu time!

I'm keeping it really easy this week.  I asked the boys to pick out something for me to make. David threw in his two cents and I filled in the rest with things that I know my mom or sister can take over just in case I'm not able to cook.

Monday -  Leftovers (aka I still have to go grocery shopping but have speech and practice today)
Tuesday - Paprika chicken over egg noodles and salad.
Wednesday - Turkey clubs with fries.  (Practice night)
Thursday - Spaghetti, french bread and salad.
Friday - Mushroom pork chops, rice and green beans
Saturday - Spanish Rice, Chicken and beans.  And oranges at Alexanders request

Like I said, keeping it simple.  I have been told that I like to take on more than I can handle and then run myself in to the ground trying to do everything.  And that I am stubborn and always make things harder than they need to be.  Not this week.

Whats on your menu?  Looking for more dinner ideas?  Stop by Menu Plan Mondays and see what others are cooking up this week.

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Don't blame the booze!

Day 7 (April 7) – Sensationalize!

Say WHAT!? What’s the most ridiculous thing you've heard about health or your condition? Where did you hear it and what did you think?

For the most part I am pretty thick skinned.  I learned real quick not to let what others thought or said about me hurt me. Growing up in an alcohol fueled family, I am was no stranger to the bottle myself.  There were many nights that I can't even recall.  Places I have no memory of.  And a lot of guilt and regret about it all.  But guess what people...

My liver Disease is not the result of drinking alcohol!!

My liver disease was brought on my a blood disorder that causes my blood to clot. My love of Jack and Coke...not at fault!  I once had a friend joke when I told her that my liver was failing about how she didn't know I was still hitting the bottle and I better put it down.  She laughed and I laughed but truth is, its no joke.  As much as I try not to, I do get upset at all the memes floating around joking about how someone is going to need a transplant because they are going to party hard.  I see my friends update their status on Facebook about how they feel sorry for their livers.  And while I am not one to judge them or expect them to see the new look on it that I have, it still makes me sad.  So no, drinking did not cause my liver disease, but it could harm one of them.  

I am not saying that having a drink is going to kill you.  Every now and then even I miss having a few drinks with my friends.  There is another thing that drives me nuts.  Even though I don't drink, I can still have fun.  I can go to a bar and to a party.  I've even played beer pong, with a partner who was brave enough to drink for me.  Poor guy!  Moderation is key people!  

For some, memes like these may be funny.  But for the 15,735 people who are on the liver transplant waiting list, its not so funny.   Liver Disease and transplant is no joke.  

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Dear 50 year old me #HAWMC

Day 6 

Write a letter to an older you (tell us what age you’re writing to!). What do you want to ask yourself? What lesson do you want to make sure you remember?

Dear Kim,

Happy 50th Birthday.  You are officially over the hill.  Well lets call it a mountain.  You have come this far and done so many things that you weren't sure you ever would.  Twenty years ago, you had no idea where life would take you.  You didn't want to think to far ahead or dream to big. But you pushed yourself to believe that even the biggest of your dreams would come true.

What have you accomplished this far.  You cheered and cried as you watched your boys graduate. You hugged them tight as they left home.  And and again as you watched them fall in love and get married.  There was a time when you were worried you wouldn't be around to see them grow up and now you are preparing to be a grandma.

All these thing would not be possible with out the gift that you were given.  We thought the call would never come, but one day it did.  What was going through your mind as they were wheeling you in for surgery?  What was your first thought when you opened your eyes again?  I suppose that your way of thanking your liver donor was to live life to the fullest.  You have done that!

You dreamed of taking the boys are vacations to see all the things you saw as a kid.  And more. What trip was your favorite?  Was it Mount Rushmore?  Niagara Falls?  I bet it was taking the boys back home and watching them swim in the beautiful blue waters that you grew up in.  How could it be anything else?!  I bet it was amazing!

And now that you know that you can do anything what else is there you still want to do?  Have you swam with sharks yet?  Or visited all the continents? If there is anything we can learn from you its that the sky is the limit and the only thing holding us back is ourselves.  Thank you for inspiring me to dream bigger and go further.

With love,

You, 20 years ago

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I want to make a difference #HAWMC

Day 5 (April 5) – Aspiration

If there was one thing I could do, no limits on money or time, I would love to help more people register as organ donors.  I can't even count how many times I have asked someone if they were a donor and only gotten confused looks or excuses that made no sense at all.  Have you ever been watching TV and seen a commercial about organ donation.  I mean really, other than Greys Anatomy, how often do you see stories, real stories about people who are waiting for a transplant or others who's lives were touched by donation?  Next to never.  Around here anyways.  I just wish I could shout it from the roof tops.  Organ donation saves lives.  You could save lives.  I can't think of any excuse to put it off.

I know as one person I can not convince millions of people to register as organ donors, but I can try.  I set out each year to help convince a few friends each year to register.  One year it was 10 and maybe this year it will be more.   I love to think that I am helping someone make the choice to save someone elses life.  Somewhere out there is the perfect liver for me.  But what if no one ever tells that person just how important it is to be an organ donor.  What if he or she wants to be a donor but never talks to their family about it.  Then when the time comes, the family says no to donating!  I want everyone to know just how important this is not just to me but to the other 117, 808 people on the transplant list with me.

I hope that though this blog and the rest of the places I hang out here on the internet, I will someday be able to say that I helped someone register and that they saved a life.  And before anyone gets negative, Im not wishing anything bad to happen to anyone. But if anything were to happen to them, I would like to know that I had helped in them making a decision that was going to save the life of 8 other people.  I really hope this sounds the way it does in my head...

I just want to do my part.  Help someone see the value and importance of organ donation.  And if they can continue to spread the word maybe, just maybe we could help out a few of the people just waiting for a hero.

So you are already a registered donor, but think you can't help now?  You may need all your organs now but here are a few ways you can help out today!

Donating Blood.  Did you know that there is someone needing blood every 2 seconds?  During the Summer and Winter holidays the supply is always at its lowest.  And one pint of blood can save 3 people.  If there is not enough of the matching blood for a patient who is going to be getting an organ tranplant, they may have to pass.  So check out your local Blood donation centers and see if you can help save a life today.

Bone Marrow.  This is another think near and dear to our hearts in this family.  Most people that know David know he was also a bone marrow donor for his brother who was fighting leukemia.  Many people ask "Where do I even start?"  Its a big leap from donating blood.  It is a procedure done in the hospital and from what David remembers, its pretty painful.  But the chance to save a life, is so worth it.  If you would like to, please go to Be The Match and see what you need to do to be a marrow donor.

And if you havent already, Please go to Donate Life America and see what you need to do to become a registered Organ Donor.  You could be someones hero you know!

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Limited Resources #HAWMC

Day 4:

Sharing Resources

I wish I could say that there is somewhere to turn for someone who was recently diagnosed with Budd Chiari Syndrome.  When I was diagnosed all I wanted to do was find a blog or person who was also living with BCS.  Yes there are other sites that are very helpful.  But I wanted to know more than the causes and symptoms.  I was tired of ready studies and statistics.  I wanted to know what day to day life was with this disease.  And that is one of the reasons I started this blog and that I keep sharing it all here too.

In the beginning I was alone.  Thanks to this blog, I have met a few other ladies who like me are living with Budd Chiari Syndrome.  Some were doing better than others, but it was nice to be able to talk to someone who has been though what I was going though.  Who have been living with Budd Chiari for many years.  One of my friends, got her transplant and her BCS came back a second time. Another girl was very very ill when she was diagnosed but after a having a shunt placed she is doing so much better!  And while I have not found another blogger who blogs about live with Budd Chiari, I have found many other people to talk with who are walking this walk with me.

Thanks to Facebook I have come across a Budd Chiari Group.  Its slow at times, but if you have a question, just ask.  The support you will get back will be a little overwhelming at times.  It is the only BCS Specific group I have found.  However there are a whole handful of Liver Disease Resources that will be a great help with the general things.

• The American Liver Foundation
• Living with Liver Disease
• Ricki's Journey
• Transplant Cafe
• Transplant Living

I really wish I could share a whole list of blogs and websites to help you understand the craziness that is Budd Chiari Syndrome.  There is so much information about Liver Disease as a whole.  If you have questions you need to bring them to your doctor.  There is no such thing as a silly question.  If I told you all the questions I have asked, you would probably think I was crazy.  But if you have a solid doc, he should answer them and explain them in a way you can understand.

I am always open to questions, so if there is anything I can help you with, please feel free to ask me as well.

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Because I AM happy! #HAWMC

Today’s Prompt:
(No so) Wordless Wednesday.  Post a picture that symbolizes your condition and your experiences.

I know I have shared this photo on Facebook but I feel that it works perfect for the prompt of the day: Find a picture today that you think tells the story of YOU.   Why does it speak to you?

A friend shot this for me when we went to take some pictures in a bluebonnet patch last weekend. As I was going though the pictures my first thought was "man, I look so puffy".  But then when I showed it to David he said he liked it mostly because I look really happy.  And that made me take a closer look.

Five years ago, I couldn't even picture being where I am today.  I wasn't sure if I would make it through the week.  I was pregnant and even the Drs were worried that one of us wouldn't make it to delivery.  Anthony, my oldest, was asking questions that I didn't know how to answer and I was pushing everyone away and shutting them out because I thought it would be easier on them if anything happened to me.  I wanted to live, but I didn't know if I would.  

But I found my way out of the dark.  I decided I was going to fight.  For me, for my boys and for my marriage.  I stopped feeling sorry for myself.  I started taking life more seriously and not so serious at the same time.  I learned to roll with the punches even though they knocked me down a few times.  And I started to live again.  

I know that things will never be the same as they used to be.  Plans change and new issues will come up along the way.   Things will not always go the way I want or plan them to.  But I am here.  I am alive.  And I am happy.  That's what this picture says to me.

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Intro to Budd Chiari Syndrome #HAWMC

I was diagnosed with Budd Chiari Syndrome and Prothrombin Gene Mutation (Factor II) in 2008.  BCS is a liver disease where blood clots form in the hepatic veins blocking the flow of blood from the liver to the heart.  1 in 100,000.  When the Budd Chiari was found so was my blood disorder that most likely caused the clots.

As the blood flow backs up into my liver and spleen it has become enlarged and causes damage.  I have been very lucky to be able to have come this far and still be stable.  No shunts as of yet.  I have equal good and bad days.  I have managed to avoid most of the symptoms and for that I am very blessed.  My greatest struggle is the fatigue.  With two young boys, there isn't a lot of time to be tired, so I have been doing my best to push myself when I need to and allow myself to rest as well.

I have MRIs done on a regular basis to check the progression of my liver as well as a yearly endoscopy.  I visit my hematologist every two months and have labs drawn depending on my results.  If all is good, I only have to go in once a month.  If my numbers are off, it becomes a weekly thing.  I am happy to report that I only see the Transplant team every 6 months now. And I have labs drawn to update my MELD score done every so often.  That too depends on my results.  The higher my score the more often I get my labs checked.

5 Things to know about Budd Chiari...

1. It is not something brought on my consuming alcohol.
2. There are more than 117,679 people waiting for organs.
3. The only "cure" for my Budd Chiari Syndrome is a complete liver transplant.
4. I will be on blood thinning medication for the rest of my life.
5. My boys have a 50% chance of inheriting my blood disorder.

Another thing I wanted to share was that April is Donate Life month!  A month to share information and create awareness of something that saves so many lives.  Maybe it has changed your life or the life of someone you love.  Many of my friends are registered organ donors, but there are a few who are not. Are you an organ donor?  How did you make the decision to be a donor?  And how has donation affected your life?  I love hearing others stories, so please feel free to share them with me!

Much love and happy Tuesday!

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Why write? #HAWMC

This is a popular question.  I started writing to keep my family updated on what was going on after I was diagnosed.  It was also my place to vent and write out my thoughts.  I don't know if I ever thought it would end up being such a big part of my life.  Its more than a journal now.  I have people that email and share their stories with me.  I have been welcomed in to an amazing circle of local bloggers who are always so full of support and help.  By sharing my life I am able to keep myself from holding it all in and letting it eat at me.  I truly believe that this is one of the main reasons I am still stable.  Mentally, living with a chronic illness is just beyond draining and frustrating at times.  Here I have a safe haven to let it all out to and not feel guilty or pressured. Somewhere to share all that is me and my life and not feel judged.

I write because just a few years ago, I was diagnosed with Budd Chiari Syndrome and I was alone.  I wanted nothing more than to find someone who was living. Fighting the very same fight and who was winning.  I write because when I found no one, I wanted to be here for the next person who has no idea where to start.  So that I can share my stories with others like me or others who just want to know what life is like on the liver transplant list and so that they can see that while it is a scary journey, there are others out there going though the exact same thing.

This is going to be my second year doing the Health Activist Writer's Month Challenge.  Last year I managed to do 25 out of 30 days and I was really upset with myself for not getting all the days in.  But it happens.  This year I am trying to be more prepared and even write a few of the challenges out ahead of time.  I guess we will see if it works.

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