September 27, 2012

A little FUN

What do you do with your kids when you are just to sick to get out of bed?  This is probably something I have asked before.  Judging by my double Wordless Wednesdays that I posted yesterday, its clear to see that my mind is repeating itself a lot these days.  So forgive me.

One thing we love to do on bad days is have some fun on...The YouTube!  It is amazing the things you can find on there (with the supervision of adult).  We watch laughing babies, funny animals and what the boys love the most is the amazing music we find.  Music rules this house.  Its something we all love. The only weird thing is both of my boys really don't care for kid songs.  They like what David and I listen to.  So que the edited versions!  

But songs get played out so fast on the radio.  I think that is why we turn to you tube.  There are covers upon covers of our favorite songs.  Sung by all ages and backgrounds.  Its never boring.  I'm always looking for something fun and interesting to show them.  

Today I stumbled across this guy.  Super fun stuff, and a cover of a FUN song.  I cant wait to show them.  And its their favorites so double score for me!  I think I actually have video or two of their version of this song :-)


September 26, 2012

Wordless Wednesday: Orangutan


September 21, 2012

Take a step. Change a life.



I just finished registering and setting up the fundraising page for the Vital Alliance/Donate Life 5 K that will be happening October 13th.  If you are local, we would love for you to join us! You can register HERE  Just fill in your info and choose as "team member"  Our team name is Team Hope.

It looks like there is going to be a lot of fun.  Free food, fun entertainment and kids games. If you register online before October 9th it is only $10 to join the team.  $15 to join as an individual.  There is a $5 late fee if you sign up the day of the walk.  Registration starts at 8:30am.  Opening Ceremony at 9:15.  There will be a free kids fun run at 9:30 and we walk at 10:00.  There will be a Healthy Fun Festival that kicks off at 10:15. So join us in Brackenridge Park at the Joske  Pavilion (the one with the big playground)!

If you are unable to walk with us and still want to help, you can donate HERE.  Each donation big or small will make an amazing difference.  Any little bit helps.


September 20, 2012

Could it really be?

As I came around the corner of the hospital, I almost bumped into him.  He was an older, thinner man.  "Pardon me" he said as I moved aside with a smile and thought about a man who used to say that.  I apologized for our near crash and turned to walk away.  Then he said something.  I didn't hear him clearly because my mind was already spinning.  And I wasn't sure if I just wanted to hear the words so badly that my mind was playing tricks on me.  I spun around, still smiling and said "I'm sorry, what was that?"

"I just wanted to see how you were doing and to wish you luck today"  

I stood there for a minuet, I could feel the tears starting to well up in my eyes.  It was almost like I was staring at my Dad, just in a different body.  His voice was the same. And those beautiful blue eyes.  There was something so comforting about this man.  I wanted so badly to throw my arms around him and give him a great big hug.  Although he probably thought I was crazy because I stood there with a huge smile on my face yet I'm sure he could see I was about to cry.

I thanked him and asked him how he was doing.  "Just fine"  he replied.  I told him I was so glad to hear it and wished him a good day.  He turned and I watched him disappeared around the corner.  I tried to keep myself busy as I waited for the doctor to come in.  Twitter, Facebook, Instagram and Foursquare.  The whole time my mind was thinking about one thing.  Just the night before I wished for nothing more than to hear my Dad reassure me that everything would be fine.  I've been worrying about getting sicker and he was always the one who calmed my fears.  Once again, he did just that.

September 19, 2012

Tears, Tissues and Taylor Swift...

You know that feeling you get when you are trying so hard not to cry and you get that lump in your throat?  You can't swallow.  You can't breath.  You just sit there.  Im willing to bet that if you watched Stand up to Cancer, the second that Taylor Swift starting singing, you know exactly what I am talking about.  If you like her or not, her song Ronan, is amazing.  

This year Cancer took my dad away from me.  Away from my brothers and sisters, my nieces and nephews.   Away from his sisters, who just a month earlier, buried their other brother.  It didn't care that we still had so much unfinished things to talk about.  It didn't give him time to fully understand that he was forgiven.  Or time for some of us to apologize to him.  It didn't care that in taking him, our lives would forever change and we would be full of pain.  My dad had lived his life. He made it home from his first fight just in time to see his youngest daughter and his first grandson graduate high school together.  He managed to raise us kids, mostly on his own.  He could braid hair like you would not believe.  And the kitchen was where he was the best.  There was always something to eat at out house.  Something unique and delicious.  He got to hold his grand kids when they were little. Except for his newest granddaughter, who was born premature a month after he passed.  I do believe he kept her safe though.  He got to see some of his kids become parents and he was so proud of us.  He truly loved being a grandfather. 

They say parents should never have to bury their children.  And its true.  Losing my father was hard, but knowing there was so much he had experienced and loved, made it just a little easier.  That night after the show, when everyone was sleeping, I sat on my boys bed and cried.  Not because I missed my dad but because the thought of ever losing one of them, or hell, even one getting sick, just about kills me.  And even though they were sleeping and probably didn't hear me, I apologized for everything I have done wrong in raising them.  And for everything I will do wrong.  I'm not perfect.  I prayed to God and promised him that I would fight for my life if he would just help me keep them safe. 

The hard part is that one day they will feel the pain that I feel today.  They will cry the tears that I am crying now.  One day they will say goodbye to me.  The hard truth is that there is a possibility that it will be sooner than later.  There is no telling how sick I will get before my transplant and no promise that I will live happily ever after.  All I have is today.  All I have is right now.  With my two little boys, my husband and the rest of my family.  

My heart breaks for the mothers who have to watch their children fight this battle.  And to those who had to say goodbye to their babies to soon.  Losing a child is the greatest loss there is.  My heart goes out to you all.  In case you missed the show, here is the song.  But grab a box of tissue, you will need it!  Then make sure your loved ones know just how much they mean to you. 

September 13, 2012

Finding {HOPE}



The theme this year over at Invisible Illness Awareness Week is:  Invisible Illness?  Share your visible hope.  And seeing as finding hope is what started this blog, I wanted to share a few moments in my journey where I found hope.

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This first Halloween was the hardest. Just days after I was diagnosed.  I was feeling so horrible but this little soldier was so excited to go trick or treating.  At the end of the night, after days of carving pumpkis, painting them and a night of trick or treating, he said "I love this Halloween and I love you"

"Some day I'm gonna fly a plane.  Will you watch me mom?"

He has been planning his future since he was 3.  And I am always a part of it.  He gives me hope!


"Let me take your picture so I don't forget you while you are gone"
The moment it really hit me that Anthony really understood. I hoped he would never forget me!


Another year had passed and I found hope in making it that far.  In just a short year, I went from not knowing if my baby or I would make it.  To watching my first born grown in to his own little person and feeling so in love with my family.  There was hope to be found it everything...


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In first steps
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In nursing


In green ribbons
In green bracelets

 silly faces
In my family

Hope is everywhere!  In the beauty of an amazing sunrise. The sweet smell before a good rainstorm.  You will find it in the smiles and hugs from your family and friends.  And some days you will feel like its not there, but I promise, it is.   What gives you hope?

Once you choose hope, anything's possible.  ~Christopher Reeve

September 12, 2012

30 Things About My Invisible Illness

  1. The illness I live with is:  Budd Chiari Syndrome(liver disease) and Prothrombin G20210A(blood disorder).
  2. I was diagnosed with it in the year:  I was diagnosed in 2008.  I was pregnant and the ultrasound showed that my liver and spleen were enlarged.. 
  3. But I had symptoms since: 2004.  I was pregnant(sensing a routine here!) and had gone in for the same big ultrasound.  The tech told me I had a fallen kidney.  He said that I had 3 kidneys and one was way down in my pelvis.  I didn't have any pain though.  However when I was diagnosed in 08 it was found that it was actually my spleen in my pelvis that had been pushed out by my growing liver and uterus.  
  4. The biggest adjustment I've had to make is:  Asking for help.  And accepting it too!  And I still struggle with it.  I want to be able to do things for myself and my family.  Then on some days I just can't.  Letting people see me so incapable and having things done for me that I could normally do on my own is hard.  It hurts.  But I"m learning to look though the help and see it for the blessing that it is.
  5. Most people assume:  I'm not sure what people think of me.  I could try but I think it would all be negative and that's not good.  I guess most people would assume that I was perfectly fine.  The probably assume that I am not being honest about being sick because I don't look sick.  
  6. The hardest part about mornings are:  The insomnia from the night before.  This week I have been averaging 4-5 hrs a night.  Tossing and turning and trying to get comfortable.  It doesn't help that I am so fatigued that I am in bed for 5-6 hours during the day.  
  7. My favorite medical TV show is:  I don't watch a lot of medical shows.  Unless Greys Anatomy and the old school ER count. Oh and Dr. Quinn Medicine woman reruns!  I have a weird taste in TV, I know!
  8. A gadget I couldn't live without is:  With out a doubt, my phone.  I live off of it.  It is my connection to the outside world since I am stuck here at home.  It is my diet tracker, my mile counter. My camera, my alarm, my flashlight.  And I am also a text addict.  
  9. The hardest part about nights are:  Trying to fall asleep.  I have horrible night anxiety.  I have medication for it. But at the moment I am out.  And I have to go back to the therapist to get my refill.  I really need to do that.  But after such a sad summer, I don't think I am ready to face it all.
  10. Each day I take __ pills & vitamins: Between 4-6.  My doses change quite often.  Sometimes we add vitamins that I am lacking.  Or I get infections and the # goes up.  Nothing stays the same for long where my medication is concerned.
  11. Regarding alternative treatments I:  Wish there was one. I'm just here waiting to get sick enough to receive my transplant. 
  12. If I had to choose between an invisible illness or visible I would choose:  Invisible.  I only have to choose what and with who I want to share it with.   While I seem to share like the wind here on my blog, there are many people in my life that don't know the whole story.  And that works for me.
  13. Regarding working and career:  I can't wait to get back to work.  To be well enough to work.  And to not have to take the medications that are preventing me from working.  Mostly I just want to contribute to my family.  The hardest part about not working is feeling like we are struggling because of my illness and there is not much I can do to help that.
  14. People would be surprised to know:  that I am just waiting for the other shoe to drop.  Some people with liver disease get sick quickly and get their transplant fast.  My body is taking its time.  The shock on peoples faces when I tell them I am not sick enough for a transplant is hard to swallow.  Mostly because I am shocked myself.  Mostly I am scared.  Just waiting for my body to fail me. 
  15. The hardest thing to accept about my new reality has been:  That my family will watch me get sicker.  It was easier when my boys were younger and didn't understand much. I was hoping that by the time they really understood I would be better.  My boys are loving boys and I can already see their compassion and caring.  I know if they see me sick, they are going to hurt for me and that is the last thing I want.
  16. Something I never thought I could do with my illness that I did was:  Make real friends.  Not the ones who just feel bad, but the kind that love you back completely!  I am blessed.
  17. The commercials about my illness:  There are none.  The day I turn on the TV and hear "Do you suffer from Budd Chiari Syndrome?"  I might pass out!
  18. Something I really miss doing since I was diagnosed is: not second guessing myself.  Or not having to keep tabs on myself in my head so that I don't forget anything.  It has made me a tad paranoid.  Its mentally exhausting trying to keep up with myself some days.
  19. It was really hard to have to give up: Honestly....Spinach.  Silly I know.  I can eat some greens with out throwing my blood into a frenzy, but high Vitamin K foods work against the blood thinners that are keeping me from clotting again.  Spinach was my favorite and its been 4 years since I've had some. Maybe this is a silly answer...
  20. A new hobby I have taken up since my diagnosis is:  I've become a more active blogger.  Its how I have connected with so many who are also living with a chronic illness.  Things are growing around here!
  21. If I could have one day of feeling normal again I would:  Spend hours playing with my boys.  To do that and not get so tired, would be the best day ever!  We could run for hours, stay out in the sun, eat what ever we want.  And Id have an ice cold beer at the end of the day.  
  22. My illness has taught me:  That no matter what you do, how good you are, how healthy you are, how religious you are, it can happen to you too! Never in my life did I ever imagine I could end up on the liver transplant list.  
  23. Want to know a secret? One thing people say that gets under my skin is:  "to much drinking?!"  Not all liver diseases are caused by drinking.  And drinking actually thins the blood, so who knows, maybe if I was a big drinker my blood never would have clotted?  And yes I know my I said on a normal day I would end with a beer.  Just one!  I was never a hard core drinker.  But I think because alcoholism is part of my family, people just assume that is the cause.  Its not.
  24. But I love it when people:  Tell me how well I am doing despite being sick. They acknowledge that it isn't an easy thing to do and that is nice to hear every now and again.  Or when I get random emails, texts and letters in the mail.  Being sick can get so lonely, so when people reach out, it's the best!
  25. My favorite motto, scripture, quote that gets me through tough times is:  "When the world says give up, Hope Whispers, Try one more time."  That is how I named my blog!  There is always a little hope.
  26. When someone is diagnosed I’d like to tell them:  That they are not alone.  I had such a hard time finding anyone to talk to about my condition with because there aren't a lot of people with it or talking about it.
  27. Something that has surprised me about living with an illness is:  The impact you can make on people.  If I were to ask friends to be organ donors before I was sick, they probably wouldn't.  But seeing me sick and knowing more about it has convinced many of them to register as donors!   
  28. The nicest thing someone did for me when I wasn't feeling well was:  Watch my boys so I can rest.  Its the little things.  My MIL has been taking my 3 yo to her house while my older one is at school.  Its amazing how good a little bit of silence and rest helps me.  I get a lot of foot rubs too.  When my husband or sister make/buy dinner so I don't have to...love it!
  29. I’m involved with Invisible Illness Week because:  There are so many people out there suffering with out anyone acknowledging  them.  Far to many people have the mindset that if they can't see how sick you are, you must not be that sick at all.  To many of us suffer alone because of it. 
  30. The fact that you read this list makes me feel:  Loved!  Its nice to know that you take a few minutes to see what the heck I'm talking about now.  

September 10, 2012

Invisible Chronic Illness Awareness Week

September 10th - 16th is National Invisible Chronic Illness Awareness Week.  And I am so excited because just thinking about it has brought up so many things I have wanted to share and haven't yet.  Hopefully I can fit it all in this week.  

What is an Invisible Chronic Illness?  Pretty self explanatory.  Invisible is unseen.  Chronic is an illness that will have a long term effect though not always permanent.  Like in my case.  I have Budd Chiari Syndrome.  I have blood clots in my liver, blocking the blood flow from my liver back to my heart.  If you saw me at the store or walking home from the bus stop with my son, you would never know I was sick.  Now if you sat down and talked to me, stuck around for a few hours to watch my meds take their toll on me in the mornings, or go with me to one of my many Drs appointments, you would get a little bit of a better view.  But seeing as you can't that's why I started this blog in the first place to share with my family and friends what was going on.  And not for attention, which I've been accused of before, but Ill write about that later!  

For now I just want to kick off the week.  Today is the first day of the Virtual Conference.  And let me tell you how much I LOVE this.  I have a lot of blogger buddies who are always off to some conference or what not and I get a little...jealous maybe.  I would love to fly to another state, spend the night in a nice hotel, attend these amazing workshops and seminars.  But instead, here I am, in pajamas, trying to stay awake long enough to finish this.  Debating if I can squeeze in a nap before my son gets home from school and my In Laws pick me up to take me grocery shopping.  Oh and I'm in my pajamas instead of some super hot outfit I fell in love with on Pinterest and bought just for the occasion.  So you can see why I love it so.  Any why I know it will be just what others who are sick will love it too!

I just watched the first seminar titled What to Say, What Not to Say and How to Help.  I was watching and kept saying "exactly" "yes"  "oh I hate that"  "oh I like that!"   You would not believe the words that have come out of peoples mouths when they talk about my being sick.  The ever so popular "But you don't look sick"  Or the "Damn, you do look sick"  There is just now winning sometimes.  I would trade looking good for feeling good any day.  I'd deal with piling on the make up over dealing with getting deathly sick and facing a liver transplant easily!  But its just not an option for me.

I'm sharing the video from this morning.  Its long, but if you ever wonder what are some things to say or not say, you really should check it out.  Wayne is so supportive.  And I love how he mentions how he was met her after she was diagnosed and was "smitten".  Because keeping a relationship working through an illness is hard, I cant imagine starting one.  Just another thing Ill touch on later ;-)



The next seminar is with Laurie Edwards about Pregnancy, Parenting and Chronic Illness.  Im really looking forward to this.  I was actaully pregnant when I was diagnosed.  I cant wait to see what she has to say.  And the best part is, that because its a virtual conference, I can replay it when I get back from running my errands.  And probably from the comfort of my own bed!