A week in my life: Monday

I'm participating in Adventuroo's "A Week in My Life" project. Just in case you ever wondered what I really do all day.  And maybe prove to some that I do actually do things while you're at work David during the day.  Or not...


Today was a holiday so I slept in. Hubs was getting ready to leave for work at 9 so I got up.  Of course Ant was happy to get to see him for once on a Monday morning.  Usually he is either gone or still asleep when we leave for school.  We both begged David to make his breakfast.  What?  It was just a bowl of cereal.  Nothing to demanding for a man that is already running late because I needed more hugs and forgot to make his lunch.  I was not at all prepared for the day and thats never a good sign.  


9:44  Breakfast is served. We have morning meds with a side of apples and peanut butter.  And water to wash it all down.  The pink pill is my Xifaxan, paired with my daily dose of lactulose will help me get rid of the toxins that cause my encephalopathy.  And the white pill is my probiotic.  Ill spare you the side effects, but lets just say for the next few hours, I was busy.  



By 12 I was feeling better.  My meds had for the most part run their course.  And I had some lunch.  The boys were outside with the rest of the family.  Riding bikes and playing games.  I decided to clean out my junk drawers in attempt to be somewhat productive.

1-3 pm was spent going though all the things I had just pulled out of the drawers.  I found the little folder/calendar that I had while I was pregnant with Alex.  Going though all the months and remembering each and every appointment was a trip.  There was a happy face next to the day we had our big ultrasound. The day the Dr told us I was carrying another boy and that while he was perfect, she suspected I had a problem with my liver.  Oh the memories.  I found this tucked in the front pocket.  A list of names, their meanings and US pics! We didn't use any of the names.



And to set the mood we have a little Wyclec on Pandora.  The song.  Call 911...


Next thing I know its 3pm and Alex is still going out side.  For a second I though about just letting him play and put him to bed early.  But then I remembered we did that last night and it was a nightmare!  So nap time it is. I think I was more tired that he was.

3:34

3:45


I know I told my sister to wake me up in a hour.  I know she came in and got Alex when he woke up.  And I know I woke up at least twice because I could feel her staring at me.  And I know it was 6 when I finally got out of bed. Days like this I am beyond thankful to have a house full of people.  Dinner was already  cooking.

After dinner  it was in the bath and then time to get ready for bed.  Figured I would save the bath time fun for another day.  So here is bedtime!

8:17Ant is ready for bed.  Dressed himself and everything ;-)


Alex had different plans.


8:35 and we are still reading.  We have read this book a thousand times and each time he asks a thousand questions.  And every time he laughs at the silly words.  And at me when I fumble them.


This is the last pic of the day.  The next few hours were spent trying to watch TV but everything was half recorded thanks to some baseball game.  No Terra Nova.  So we figured we would watch CSI but that was the last half of The Good Wife and only the first 20 mins of CSI.  But guess what did record all the way.  Hawaii 5-0 so the night wasn't a total bust.

Stay tuned to tomorrow and see what goes on.  Hopefully it will be more than a bunch of sleepy pics!

Read More

Let me off

I woke up one day on a roller coaster, I never planned on getting on.  But I'm here, trying to hold on.  The curves when you least expect it.  The amazing highs and the gut wrenching lows.  And now, a free fall.  Right into reality.  You see, the past few weeks I have been so busy and that I forgot I was even sick.  Its like I just turned myself off and did what needed to be done.  Nothing more, maybe a little less, but enough to get though the days.  I ignored the pain and fatigue.  Forgot to eat and take my medication on time.  It was like I was carefree and healthy.  And then the floor dropped our from underneath me.  Again.

So what changed?  What triggers these ups and downs? Its always somthing small.  Like saturday night, watching David enjoy his nice cold beer and thinking, damn that looks good.  Im no lush.  But sometimes a beer sounds so good. I get online ans hear about people curled up on the couch with a glass of wine and Im just curled up in pain.  Jealous?  Bitter?  Just a little.  

There I was laying in bed.  Trying to get comfortable.  And trying to decide if I should take Ant to bed or not.  I miss the days when I felt strong.  When I was working I tossed around 50lb bags of supplies like nothing.  And now I was dreading carrying all 36lb of him.  The fact that I had to take a breather half way though the hall  really ticked me off.  And it wasn't the fact that his knee was pushing right into my gut, it was the fact that I can no longer just pick up my kid.  Yes I know he is 6 years old. But still.  If I am this week now, what is it going to be like later on down the road?

In the morning, after a whole night of worriying over what I am going to tekll the boys when I do get the callI just didnt even have it in my to smile when David told me he loved me.  Wait, what the hell am I going to tell the boys.  And with that, here I am again. Awake in the middle of the night, trying to make sence of the mess that is my life!

To be continued...

Read More

Refresh and a Birthday wish

Have you ever sat staring at your screen hitting refresh?  I feel like I have been doing that so often lately.  To my life.  Just hitting refresh every day and praying something would change.  This morning things were different. I feel like there is less weight on my shoulders.  I feel a calm in my heart.  And I feel relaxed.  I don't know what changed.  But I'm not about to sit around and wait for the other shoe to drop.  I'm going to make the most of it while it lasts.  And pray it lasts for a good while!

Today is also my little brothers Birthday!  Happy Birthday Jeff.  My birthday wish for you is that you feel the same calm as I do.  I know sometimes you feel like there is a roadblock at every corner you take in life, but I promise to always be here to help you push though them and move forward!  Remember that!  I love you!

I'm off to enjoy this blessing!  I hope you are all having a great start to the week.  Thank You for your love and support!

Read More

Letting go of normal

Why am I so afraid of this?  Last night was day one of no night time nursing for Alex.  And after he was asleep, which took a whole 5 mins, I laid there watching him.  So many thoughts ran though my head.  I had planned on self weaning, but at 2 and a half he shows no signs on giving it up.  And before anyone throws in the whole OMG hes 2, get over it.  Our breast were made to nourish and comfort our babies!  But now that I say that, is it horrible of me to take away that comfort.  That is the only reason he nurses still.  He usually cant fall asleep without it.  I'm so torn here.  One part of me feels really guilty for taking away what he finds comfort it.  And I think about our time together, I will really miss that bond.  On the other side, Id love to be able to go to bed and not have a kid climb up my shirt in the middle of the night.  And part of me feels like hes ready to be independent.  And yes a tiny little part of me is tired of hearing all the remarks about how hes to old, or that's why hes so attached and so on.

I go back and I read this post about our journey and I wonder if I should really stop.  It was such a struggle just to get started.  Gave up halfway though, then rallied and have been nursing champs.  When I think of not nursing anymore I feel like I'm taking away the one thing I can give him right now. Comfort. I'm worried that I will get sicker and as he grows he will forget the time we spent together and will only see the sick me.  And that is something I will always worry about.  I still feel guilty letting my oldest see me sick.  But eventually there will come a time with there is no hiding it.  Maybe none of this is making sense.  Not a lot does these days. 

I know as I continue to get sicker, I will no longer be able to nurse.  I have tests that need to be done, but because of the amount of radiation, since I am breastfeeding, I am not willing to do.  I know that there will only be more medications to clear, and more procedures done and eventually more hospital time.  So do I stop now and prepare for that, or enjoy what time we have now?  I think what is holding me back the most is that in my crazy life, between the Drs and pills and needles and sickness, breastfeeding has always been the most normal and natural thing about my life for the last 2 years.  But I know it cant be forever. 

Since writing this, Alex woke up had cereal, watched a little Mickey Mouse and is now playing away.  When I changed his diaper I asked him if he wanted to nurse he said no.  I asked him if he was a big boy now and said with a smile.  "Yesh Mom!  Me big boy"  So I guess we will see how it goes.  Next stop big boy underwear!!  I know I have shared it before, but its moments like this that I will always remember.

Today is the first day of fall yall.  Have a wonderful Friday and a great weekend! 

Read More

Liver Clinic Update

Is it wierd that I am freaking out because I dont have to go back for 5 months?  The Dr who I saw was not my favorite regular Dr.  So things were a bit different.  It seems like more and more the nurses are doing what doctors used to.  First I saw a nurse who took my vitals.  BP105/50.  Temp 99.5.  Weight....yeah not going there.  Answered a hundred and one questions.  And then came a Dr who I had never seen before.  Who had me explain my answers to the questions asked by the nurse.  Then came the dreaded exam.  He looked at my chest for any spider veins.  Checked my hands for swelling and flapping. My eyes for any yellowing.  And then my belly.  Seriously, my liver and spleen are so large and swollen that anywhere you push its going to be tender. Yes here and yes there. I thought I was going to break my toes from curling them so bad.  He said he could feel that my spleen was quite big as well.  Fun times I tell you.  Then it was off for blood work.  Only 6 vials this time, thank God!

By the time we got home, I took some med and went to bed.  Im truly grateful to have my family here.  Uncle Jeff was in charge of homework and reading.  Aunty Bug picked the boys up and fed them and gave them a bath.  Bubu supervised!  And I woke up just in time to say goodnight to Ant. Talk about a quick day.  Of course I was up till 3am and up at 6 but I am feel well rested so no complaints here!

So unless anything changes, I think besides monthly blood work and a hematologist appointment, I'm done with Drs till the end of the year.  Oh and a trip to my primary for a flu shot as soon as I schedule that.  But all easy stuff. And with family here and next months Donate Life walk, then the holidays, the rest of the year is going to fly bye.  Which reminds me! I have so many fun holiday activities planned, thanks to Pinterest, my new love.  I should share them with you all.  Wishing you all a fabulous rest of the week!

Read More

Drained

Today has been yet another one of those days.  I got up, did our usual morning routine.  And one the walk home I kept telling myself that I needed to do something productive today.  But when I got home I think David was thinking one step ahead of me.  He told me to go back to bed.  So I did.  Well, first I played on the phone until he insisted a second time :)  Didn't wake up till 11.

I did manage to do one thing today and that was a little laundry.  One load.  And the rest of the day was spent sitting on my butt in front of the computer.  My pain is different today.  Hopefully that's not to bad of a thing.  But I've been hiding away in my room so that a big deal wouldn't be made about it.  I think its just a combination of stress and sickness and frustration.  I just want to curl up in a ball and be left alone for a day. I am also feeling a little worried that I have not had one donation yet to my Vital Alliance Walk.  I know money is tight for everyone, so I am just not going to sweat it!

Since that's not going to happen, I am off to get the boys fed, in the bath and off to bed.  I hope everyone had a great weekend. Much love!

Read More