June 19, 2012

Sharing our Spoons Week #7

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“Sharing Our Spoons” will be a weekly link-up where you are able to find support and encouragement to focus on your entire health. Not just physical but all of you. For this link-up you will be able to choose holistic goals to help you achieve optimal health. The five goals include: Physical, Mental/Emotional, Spiritual, Something Fun and a Bonus.



Ok, I  took a few weeks off because I was sick and dealing with some things, but I'm back and ready to set myself some goals.  I was horrible at keeping up with the last ones because I was pretty much in bed for the last 2 weeks.  But I'm feeling better about everything so here we go.
  1. Physical: Exercise at least 3 times this week.  I'm still feeling very tired, but I am trying to work my way through it and not wear myself out.  So I figured I would keep this goal open so that I could walk or ride or work out at home.  Who knows maybe I will get in the pool.  I think 3 days is manageable for now. 
  2. Mental/Emotional:  Read.  I love to read but hardly ever do.  And when I do, I can feel the stress leave my body.  I've read 5 books in the last 2 weeks and I really think that it has helped me get back to myself.  The only problem is apparently I read to fast and run out of books.  I have 7 more on hold at the library and I hope they come in soon.  If a book is available at another library, they will send it to the one closer to me.  That way instead of walking around the library, when I go in, they have them all together on the hold shelf for me.  One way to save some spoons :)
  3. Spiritual:  I am going  to take a highlighter to my prayer book.  Last night I felt like there was something I needed to read and it took me forever to find it.  I read though so many prayers and I kept telling myself to remember them, but with my mind, its impossible.  So I think I will highlight them.  Its not bad is it, to mark in my book?  Hope not.
  4. Something fun:  I think we are going to attack the "Summer List" over the next few days. A few of the things I am most looking forward to are the picnic, Sno Cones, swimming at night and a scavenger hunt.  Hopefully we will cross of at least 5 things this week.  Whats on your summer to do lists?
  5. BONUS: This week I have to make some phone calls.  I'm not sure what it is about talking on the phone, but I've become so used to text and emails that when I have to actually call someone, my palms get sweaty.  And this drives me nuts because I love the people I talk to and hate that we don't talk more.  So this weeks goal is to get back in touch with a few people I have been thinking about and actually call them.  Or Skype.  That makes it even more scary when they can actually see you! Ha! I clearly have some issues to deal with.
Don't forget to stop by A New Kind of Normal.  Join the fun and see what the others are up to this week!!

June 15, 2012

Accepting me for me

Its amazing what a few days of just thinking can do for you.  I have cut myself off a bit this week.  Mostly because I've been sick and this cold just kicked my butt, but also because I was bursting at the seams with emotions.

I kept going over in my head trying to figure out what it was that has been eating away at me.  I've gone though every emotion known to man and probably a few I just made up.  Highs and lows and every in between.  I thought way back when I though I was to broken to let anyone in.  I was an empty shell for years.  Everything I am going though now is nothing compared to the hell of those years.  

I thought of the highlights.  David.  My boys.  Being surrounded by a happiness I never felt worthy of.  Sitting in the church as we baptized the boys and promising to always do right by them. At the time I was in denial of even being sick. My life was falling apart around me, but there in the church, my heart was at peace.  A first for me.  I keep saying I want to go back, but honestly part of me still feels...unworthy? I don't know.  I need to change that.  Id like to feel that peace again.

I took a good long look at how far I've come.   I have accepted my past.  Whats done is done.  I've accepted that I am sick.  That doesn't make it any easier, but I have no real control over it now.  I am married to a wonderful man.  Who even though he is a man of very little words, his voice still gives me butterflies.  I am a mother to two very trying, headstrong and absolutely perfect in their own way boys. They are my everything.  I have friends and family who have been supportive and loving of me always.  Some old some new and some I've never even met in person.

For a second there I though I was having some sort of breakdown.  I've been depressed before, it wasn't that.  Then I realized, I was just sad.  Sad that things aren't quite what we imagined them to be. I feel like there is so much that could be changed to make things better.  But that's life.  I don't want my life handed to me on a silver platter.  I don't want people to feel sorry for me.  I don't want to be stuck at home.  I don't wan to be sick anymore.  When I am better, I will be able to get a job and contribute.  Take some of the responsibility off Davids shoulders.  I will be able to go to all the wonderful events and parties that I've had to miss out on.  I will be able to get up and get out so much more.  Yes, I am just sad.  And I'm allowed to be.

But this is my life, for now. And I just have to accept that.  There will be good days and there will be bad.  But I am here and that in itself if a blessing.


June 12, 2012

Is this it?

I stood up feeling rather different.  As I do every morning, I walked in to the bathroom and weighed myself.  And before you say anything, its not about losing weight for diet purposes.  My Dr has asked that I keep tabs on my weight regarding my liver disease.  He said if I gain weight to fast, the cause is most likely going to be ascites, fluid in the belly.  So every morning and night, I weigh myself.  Its not the funnest thing in the world.  And it would be nice to see a lower number, even after months of exercise and watching what I eat, I kept gaining and gaining.  

Saturday morning, I weighed myself, no change.  Sunday I walked past the scale a million times with out stepping on.  Then Monday morning it was back the the routine.  Except this time it was 4 lbs lighter.  Confused, I double triple checked each time coming back the same.  I didn't track my food intake last week, but I know I should have probably gained 4 lbs not lost.  Shoot me, I had take out!  

Yesterday as well as much of last week I was in bed.  I'm so tired.  So weak.  I kid you not I almost wet myself trying to get into the bathroom because my hands just could not open the door.  There are days when I can barely open my bottled water.  All week, no exercise and lots of eating, what is going on here.  This afternoon when I woke up, I am another pound down.  And even more confused.  

I'm tired.  I'm weak.  And I have lost 5 lbs in 3 days.  And I cant help but wonder, is this it?  Am I getting sicker or is it just this cold I have?  Can a cold make you lose weight?  I'm still eating, not as healthy as I usually try to.  I'm just confused.  I have a appointment with my hematologist next week. But if the weight keeps dropping off like this I will have to call the my Transplant Dr and I can only imagine how that is going to turn out.

Last night I served my family ramen for dinner.  Ramen.  I feel so horrible about this.  David of course didn't say anything.  But I always try to feed my boys well.  They work and play hard they need to eat.  I will have to be more prepared making sure I always have a fall back meal for days I just cant cook.  Until last night I would just suck it up and make dinner.  I'm horrible at asking for help.  But last night, when I just couldn't do it, I realize its just something I will have to deal with for a little bit.  I have seen lots of freezer meals on Pinterest.  Looks like that and the crock pot are my new bests friends!  

Taking a few minuets to let myself think and accept this as the way my life has to be now.  Mixed emotions on that one.  But mostly I am thankful to have just been able to wake up in my own bed.  By none other than sloppy kisses from a certain Great Dane.  While two boys sit back and laughed their little butts. Stinkers.  Even though all this mess, I can see that I am blessed.  There is always someone out there who has it worse than you.  Don't ever forget that! 

I should probably get caught up with my Sharing our Spoons.  Two posts in one day...hopefully!


June 11, 2012

What is a MELD score?

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Bloodwork for the Liver Clinic
If you have been following for a while you have heard me talk a bit about my MELD score.  And a lot of people ask " what is a MELD score?"  So I figured I will explain what it is, how its found and how if plays in to my life of the transplant list.

MELD scores from 6 - 40 and are used to measure the urgency of a transplant.  So the higher the number the closer you are to transplant.  The score is calculated by taking a look at three test results.  Bilirubin, Creatinine and INR.

Bilirubin is yellow pigment found in bile that is made by our livers and stored in our gall bladders.  As you liver fails the bilirubin is not properly disposed of and that is when jaundice sets in.  Causing the yellowing of the skin and eyes. A normal bilirubin level is usually less that 1mg/dL.  Last time I had it checked mine was a 1.4

Creatinine is chemical that is the kidney usually filters out of our blood.  If the kidney is not working properly, creatinine will build up in your blood. By testing the amount the doctors are able to measure how well, or not, our kidneys are functioning. Just like the bilirubin, creatinine is usually less that 1mg/dL.  My last labs show me at 0.72. No complaints there.

INR is the third.  This measures our livers ability to make blood clotting factors.  A higher number means that the liver is taking more time to coagulate or form blood clots.  In my case, because of my blood disorder, I am on blood thinners.  My INR is monitored not only by my transplant team but a hematologist as well.  It is also kept a little higher because I am prone to clot. The average range is 0.8 -1.2.  I am kept at 2-3.

All together, these 3 tests decide what my score is and define my place on the transplant list.  I have varied from 9-22.  Mostly because of my blood thinners.  Either way, I am not high enough on the list to be expecting a call any time soon.  Nor do I have any other complications that would  bump me up any.  So we wait.  Hopefully this helps some of you better understand what I'm talking about.  Hopefully I have explained it all properly.  I should take note from my liver buddy Ricki and give a general disclaimer to my hepatic encephalopathy! It makes my brain mushy!!





June 4, 2012

There are bound to be bad days!

What better way to start out the first full week of summer by laying in bed all morning.  Of course it would be better if I wasn't curled up in the fetal position crying in pain, but hey, I'm trying to be positive here!  This is it.  This is my life.

Over the past  month I have been counting my blessings.  Everyday I got up and felt OK, I said a prayer and gave thanks because I knew days like today laid ahead.  I forgave mistakes.  I over looked the little things that usually drive me nuts and I tried not to raise my voice.  I said tried.  Because even though I tried, stress has been killing me and my nerves are shot.  And if you know us, things get pretty hectic around here.  I'm not perfect.  I will be the first to admit it too.

This morning was the first time in a while that I let it all get to me.  After only minuets of sleep in between tossing and turning and trips to the bathroom, my alarm went off.  Woke up mom and sent her to pick up Melisa from work.  Fed the dogs and boiled eggs for lunch.  While the eggs boiled I laid on the couch.  The cold leather felt like heaven.  But before I could even close my eyes, the alarm was going off again.  Eggs were done and it was time for my morning meds.

I didn't take my meds.  After pulling an all nighter and puking though most of it, I didn't really want to spend anymore time in the bathroom.  So I quickly made the egg salad, packed Davids lunch, let mom know when to take the dog out and crawled back in bed.  I'm not really sure what upset me more.  The pain or watching David get ready to leave for work.  I wanted the pain to go and him to stay.  Before I knew it I was crying.  I hate when I cry in front of him. I know he had to go, but I wanted so badly to beg him to stay.  And at that point he probably would have but I know he had to go.  So he kissed me goodbye and headed off.  That was the last thing I remembered.

I must have finally fallen asleep and was woken up by a tongue to the face.  Again.  I've accepted it as part of being a Great Dane Mom.  Just another part of life.  Fell asleep to a kiss and woke up to one too.  I've said it before, I'm a lucky girl.

I managed to roll out of bed around 11.  Get the roast in the crock pot and the coleslaw mixed up.  Fed the boys.  Took something for the pain and plopped down on the couch to watch some TV.  Now its 4:30, I need to finish putting dinner together.  There is no way I'm going to the store today. But I did manage to finish my list so hopefully I will be up for in the morning.

Before David left he asked me if I needed to go to the hospital.  I didn't think it was necessary, after all, this really is just part of being sick.  My pain meds lasted about an hour and I can feel it creeping back up.  The only thing is he just told me that he will have to pull a double.  So even if I wanted to go, I couldn't.  I could, but I'd be there alone and that's not happening!  The good news is overtime..

Off to feed the pack now.  Then this momma is going to bed.  I am so thankful to have my mom and sister here to help me.  And even more thankful for kids who are caring and forgiving enough to love me even though I didn't get to play today. For a husband who busts his butt to provide for us. And for all of you who help carry me though days like this!  The week can only get better from here!