What does sick look like?

Ask anyone who is living with a hidden illness what bothers them the most about being sick and I will bet you not looking sick will be one of their answers.  For the most part I can look past this.  I get it all the time.  From my Drs, my friends and even my own mother.  I understand it but that doesn't make hearing it any less frustrating.

Looking in the mirror, I see what you see.  A smile. A little make up.  I hear what you hear.  My laughing and joking.  But I don't feel what you see and hear.  On the inside, I have sharp pains that make me want to fall to the floor.  Instead I crack a joke and a smile. When I want to cry I force myself to laugh instead.  David and I joke about how back in the day I could get up and go after only a hour of sleep and now even 8 isn't enough.  I nap more than my kids do.  Even though you cant see it, this illness has taken its toll on me.  Body and mind.

Who wants to look sick.  Every morning I wake up, afraid to look in that mirror.  Afraid of the day I see a stranger staring back at me, again.  I remember what if felt like to look as bad as I felt. When I was diagnosed, I was pregnant and thought that it was just the pregnancy.  I joked that the baby was sucking the life out of me.  I had been feeling sick for a while.  But I did what most moms do and pushed though.  Moms aren't allowed to get sick right?  Wrong.  Once I got pregnant, things got worse.

Sick does't always mean looking sick!  Thankfully with some make up, most days I look presentable.  I don't want to look sick so I do my best not to.  But that seems to be backfiring on me.  What does sick even look like?  How about this?

Do I need sunken saggy eyes?

Do I need to be in the hospital?

Do I need to lose 40lbs?  (don't really answer that! lol)

Or maybe lose more hair?

Your cant judge someones health by how they look or sound.  You wouldn't think that I felt better in the first photo than I did in the last.  But I did.  People used to sigh and gasp when they saw me in the store.  I could never figure out why.  Now that I look back on it.  I looked like the pregnant corpse bride!  Maybe I did look sicker then.  Maybe I was?  But I never got "better"  I body is still slowly shutting down on me.  I still need a new liver to live.  I still get butt hurt when people tell me I don't look sick.  After all, I'm only human.

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Date night

Oh how I needed a night like last night.  David was given tickets to the Spurs/Hawks game and he took me along.  We have been before but these seats were SO much better.  I have to admit basketball is my least favorite sport to watch on TV.  But I love going to the games.  I love the clapping and the cheering and actually seeing the players.  They are freaking tall!  Or maybe I'm just short.  Whatever, its fun.  And if only I had gotten a photo of the look David game me when I got all giddy because Manu was there and I thought he wasn't.  Hurt hand and all, you know.  And Timmy, I love him!  What I'm trying to say here is that I had a great time.

We are hoping to take the boys back for game too.  Who knows when, but things just aren't the same when we don't get to take them.  And if we had 4 seats, we wouldn't have to worry about the guy next to me rub his hairy leg on me or the guy in front of us put his arm back and touch our drinks! Gross.  It was really cool however to see people who have season tickets talking to the others who have tickets.  Its like extended family.  People take their teams very serious.  Ladies with dyed hair.  Dress from head to toe in Silver and Black.  I love it.

I didn't get a photo of the two of us to share.  We do have one that one of the photographers took, but just can't dish out the $52 for a digital copy.  Or $18 for a print.  I really wish they would let us take our big cameras in. I'm not looking to make money of my photos, just want to have better than my point and shoot.  That's all.

I wonder if any of the players would be willing to wear a Donate Life bracelet for me during a game?  That could be a fun challenge.  Something to thing about.  Now that I have had some quality time with David doing something other than grocery shopping.  I feel refreshed and better. Especially after 2 days of Drs and needles. It was a great night for sure.  I wish we could do it more often, but Ill take what I can get :)

Happy Thursday!

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Whats up with me?

I was coming home from the lab this morning after having my blood work done and had the perfect idea for todays "Medical" post.  Got home, started chores and now I haven no idea what so ever what it was.  So I will just tell you all about some things going on around here.

Today I had blood work.  My Dr called me a few hours ago to let me know that my INR was a 2.6.  So no change in doses and I don't have to go back for a whole month!  Heck yeah!  I hate when my blood goes crazy and I'm back on weekly draws.  My veins don't even have time to heal!  They are getting ready for a vacation!

Tomorrow I have blood work for the transplant team.  Plus an MRI.  So that means, one arm is going to get stuck twice.  And Ill probably bruise but not biggie.  I get scans done before every liver clinic appointment.  And sometimes from multiple doctors.  So I'm looking at over 15 scans in the last 3 years.  Don't even get me counting ultrasounds because I had over 30 just while I was pregnant.  At one point I was keeping track but lost count!

I don't have clinic until next month, but by doing my scans and labs early, we can go over the results when I get there.  God I hope MY doctor is there.  I have a few questions that I know he will take the time to answer unlike the other Drs who seem to just rush though the appointment.  I hate that.

I'm still working on my goals for the month.  Gotta step in up (literally) seeing as its the 23 and Ive only done 14 out of 30 miles.  And I'm working on the new food part.  My book will be here tomorrow.  I love Janet Evanovich. I know I will have no problem reading the whole book in a day or 2!  So if I go missing, there will be a 80% chance I will be hiding somewhere with my face buried in a book!

What are some of your goals this month/year?  Have you stuck to them so far?  Wishing you all a wonderful week!

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Love

alexBW, originally uploaded by kmunoz28.

I can still see him this little. I think in my eyes he will always be this tiny little baby. With an old man hair do and such a serious face!

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A letter to the Birthday Boy

Dear Alexander,

My sweet baby boy.  So serious yet silly.  Wild yet caring.  You are everything good in this world.  My world.  Even at the young age of 3 you have figured out how to make your self known.  You can frustrate me to tears then turn around and make me laugh so hard that I cry again.  The words aren't all there, but you make sure we hear you!  You are so smart and amaze me every single day.  There is always something new with you.  So unpredictable.  I'm supposed to be the one that comforts you but most days its the other way around.  Your smiles make me smile.  Your laugh is infectious and your kindness melts my heart.  

The very first time I saw you I knew you were destined to do great things.  I gave you a strong name to fit what I knew would be a strong personality.  We chose well.  My Alexander the great!  The day you were born is a day I will never forget.  Hearing you cry and having the nurses tell me you were OK was such a relief.  I would have never forgiven myself if my body hurt you!  But you are perfect. And I am better because of you.  

I hope that you know that I love you.  I would have given my life for you and I still would.  Daddy and I love you so much.  And Anthony does to.  I know sometimes you wouldn't think he does, but he loves being your big brother and is very proud of you!  As are we.  You are going to do great things when you grow up.  You have amazed me in the last 3 years I can wait to see what you will do with the rest of your life.  

Just now, you laid your head on my lap and told me you love me.  Snuggled up real close.  You are off in Mario Land but every few minuets you look up at me and smile.  As if you think I am going somewhere.  I'm not baby.  I will be here for you any time you need me.  Always by your side and forever in your heart.  Remember that!  I love you to the moon.

Love Mom

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Let there be blood

I was thinking this year I would start something a little different.  Most of my posts here are about how all of medical problems affect my life, but never so much about the actual problem.  And so I figured to help you guys as well as myself understand the hows and whys, I would designate a day of the week to talk about it!  Sounds like so much fun I know!  So it will be a Medic Monday!  And if anyone has any questions, please ask because if I cant answer them, I know a few doctors that can.

I figured today I would start by going way back.  Back before I even knew I was sick.  Way back 29 years ago when I was born, because that is when it all started.  See I didn't just magically get a blood clot in my liver. It wasn't from drinking or doing drugs.  My problem started as soon as the blood started pumping though my tiny little body.  Thanks to the Prothrombin Gene Mutation G20210A.  Its a mouthful, but that is what started it all.

I have heard of someone who bled easily(hemophilia) but never of someone who clots easily (thrombophilia). This gene mutation causes my blood to create more Prothrombin protein, making it more likely for me to get a blood clot. Its a hereditary gene passed down to me from my father.  Something he wasn't aware he had till he was tested for it.  Its a quick blood test that has to be asked for by a doctor.  Its not something that is checked for in any regular blood work.

The normal range for someone who isn't on medication is 1 an can differ a few points up or down.  For me personally, I am being kept at a 2-3.  The higher the number the thinner the blood and an increased chance of a bleed.  A lower number will mean thicker blood and an increased chance of a clot.  So you can see why my meds are always being adjusted.

Last week I had labs and my INR was 3.6.  I had to recheck again today and now I'm at 3.0.  I take 8 mg of coumadin on Tuesdays, Thursdays and Saturdays.  And 7.5 on the other days.  I used to take 8mg on Sundays too but since my INR didn't drop quite enough, we adjusted and I have to go back again in a week.  The ONLY reason I didn't mind taking the Lovenox injections was because there was no adjustments.  But the bruises and shots twice a day were dreadful.

Wishing you all a great week.  And yay for a 3 day weekend coming up!!

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One Fear

If you have been following, you have read that I am going to be starting a fundraising effort to help offset my transplant expenses.  Asking for help has been one of the hardest things I have ever had to do.  All my life I have been to stubborn to ask.  Most of my life growing up was kept secret.  Not many people knew what was really going on and most that did, only knew the half of it.  When I struggled in school, I didn't dare as for help. To afraid someone would ask me a question and I, being me, would tell the truth.  Even more so that when I did ask either I wouldn't be take seriously or be let down, again. That's how I was.  If you asked, I would tell.  But only if you asked.  Now that I have grown up and see how damaging that was to me, I managed to let go, forgive the past and now, I cant keep my mouth shut most of the time.  But I still am so afraid to ask for help.

Mom said to me the other day when we were in the car, that it seemed like I didn't need any help at home.  That it seemed like there was nothing wrong with me.  That is what scares me most.  People can be so judgmental.  Moms right though.  I don't look like someone who needs a liver transplant.  I am not jaundice and I am by no means fragile looking.  I still manage to get up everyday and make sure things get done around the house.  I play with my kids the best I can and I even venture out of the house on the weekends with the family. Doesn't sound very sick to me.  

But on the inside, I feel like I am carrying around a pillow stuffed inside me.  The pain is the same but now I'm just plain uncomfortable.  I sleep a few solid hours every night.  Tossing and turning the rest.  I need reminders to take my medication and back up reminders, because I usually forget what I am doing while I am on my way to the medicine cabinet.  My medication makes me sick to my stomach and most days I have a hard time staying hydrated.  I'm online a a lot.  Trying to keep the only social connection I have alive.  But sometimes it takes all the focus I have to just write out my thoughts or reply to calls and emails.  I nap for hours during the day, not because I am lazy, but because its the only time I can sleep.  However, having 2 young boys makes that kinda hard.  Things just have to get done and I seem to have the need to do it all.  Stubborn me!  

All of a sudden I worry what people will think.  Here I am asking for help, but to them, I look like I am the last person who needs it.  When I asked, people I never imagined reached out.  I am blown away and scared out of my mind now.  I was so ready to be let down.  Figured, I would ask once and drop it.   I cant show you my illness, I can tell you all about it, and that's what I try to do here. I should have known that the people that offered to help would.  They have all been nothing but pillars of hope for me all this time.  I am looking forward to getting to know them all better and someday thanking them for everything they have done for me.  

I hope this makes sense.  I'm a little foggy today. My energy is at an all time low, but I'm trying so hard to stay ahead of it.  Had planned to have mom drive us to the duck pond after school, but I think I will be needing a nap so maybe when I get up, a walk around the block will be enough for them.  Gotta save some energy for the weekend.  Have a good one too!!

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A kidney or a liver?!

Last night I was getting dinner ready and trying out a new Chili recipe. I had written in down quickly and set it aside. It wasn't long before Anthony came in to see what I was doing.

Anthony: Mom, what is a kidney?
Me: Its an organ. You have 2 of them!

Anthony: Why do you need it
Me: Because it helps filter bad guys out of our blood

Anthony: I thought you needed a liver?
Me: I do baby!

Anthony: This paper right here says you need kidneys Mom!!
Me:(turning around to see what he was talking about) Anthony! That is the recipe for dinner silly!

Anthony: THERE ARE KIDNEYS IN OUR DINNER?!!!!

God I love this kid!!

Its an old photo, but this was the exact look on his face :)

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Update for today

Well both boys are finally sleeping, meds are down and have stayed down, and I'm about ready to crash out myself.  As soon as the eggs are done boiling for tomorrows lunch.  What an exciting night eh?

I had my appointment with my Hematologist today.  It was my first visit in his new office.  I LOVE this Dr.  He is amazing.  And even more amazing is he is hoping to have a coumadin clinic open soon.  For those who are reading with a funny face, the blood thinner I am on is called Coumadin.  Well technically I am on the generic, Warfarin, but same thing.  Anyways this has to be monitored very closely, so that means monthly blood draws, which when my numbers are bouncing around can lead to weekly blood draws and you get the picture.   My poor veins are tired.  But with a Coumadin Clinic, I could walk in, get a quick and almost painless finger stick and even better have my results right there!  So much better than waiting on the labs.  So thats good news!  Bad news would be that my INR is 3.6 and thats a little high. We are going to recheck in a week and adjust my meds from there.  I want to be between 2 and 3.  We will see what a week does.

My blood pressure was 98/62.  Low but nothing that concerned him.  So I'm going to just go with it for now.  The nurse said I must be really relaxed!  I laughed and told her that I felt half dead.  I was so tired, I fell asleep in the exam room.  Good think the Dr was running a little late, because I got a quick 10 min power nap.  Didn't help much.  I still came home and was in bed till almost 7 I think.

This fatigue is killing me. I'm trying so hard to push though it but its so hard these days.  I wonder if something else is off somewhere.  I will find out in a month when I go back for more blood work at the Liver Clinic.  And I have my MRI that same day.  I think I'm going on my 14th MRI in the last 4 years.  Its to the point where I fall asleep in there!  And I actually love getting my IV flushed.  Its refreshing.

 I'm so glad its almost the weekend.  Looking forward to some park time with the family if the weather agrees.  And hopefully my body agrees too.  Here's to hope!  Have a wonderful weekend!

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3 Days

It took 3 days into the new year to remind me that I am sick.  Words can't describe how I feel right now.  Disappointed mostly.  I knew it was coming yesterday when I started getting tired mid afternoon.  I have been doing so well in not falling asleep in the middle of the day.  I fell asleep at the computer. THE COMPUTER YALL!  I never do that!

Last night Melisa reminded me that we had Kohls cash that needed to be spent before midnight and so at 7pm we dropped everything and went to do some shopping.  After only a few minutes of being in the store, I thought I was going to be sick.  So I went to the bathroom.  As I sat there I realized what was going on.  I had tunnel vision and it sounded like I was underwater.  I had to focus and remember where I was and why.  It was like I just woke up...in a bathroom!  Why?  Why do I always run to the bathroom when this happens?  I start to feel disoriented, drunk like and I always find myself in the bathroom.  Every time.  Hello H.E.  Or as my Drs would call it, Hepatic Encephalopathy. 

I fell asleep before Alex did last night.  I woke up, and he was just laying next to me starting at me.  He asked me to scratch his back.  David said he woke up around 12 and he was just laying between us talking to me.  I was sound asleep though.  Another thing that never happens.  I woke up this morning feeling like I had just fell   asleep but after what happened in the store I knew I was going to have to suck it up and get out of bed.  After we dropped my oldest off at school, we went to get groceries and came home.  Alex slept though it all, which was nice and surprising.  David went in to work late today so he offered to take me to lunch.  Ill have to write  about our conversation later.  Because I'm in bed again and falling asleep.  Whataburger isn't on my OK to eat list, but I'm not feeling guilty because I don't think I even have enough energy to eat anything else today.  I could barely push the seat belt release by the time we got home.

And here I am in bed.  With my water.  Propped up on pillows because its the only position that doesn't hurt to much.  So tired.  So weak.  Angry that this is happening but thankful for another day.

Happy Tuesday!

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Running Away

A new year comes with new promise.  This year one thing I would like to do is run. Maybe every day, probably not.  Not because I don't want to but because running hurts me.  I've been feeling lately like I am stuffed.  And I kinda am with my liver and spleen so enlarged.  Add that to being top heavy and running isn't the most coordinated or comfortable thing for me.  I'm sure I look like a spaz doing it too but oh well.

Yesterday mom said that if I wanted to continue to do things all year that I needed to do them all today on the first day of the new year.  I joked that I was going to get up early, make breakfast, smile as I served it, pull weeds, clean house, and run.  Its almost 10 and the only thing I didn't do was pulling weeds.  No to bad.  I was going to run this morning, but I put it off.  But when it hit 7 and still no run, I knew I had to just do it and get it over with.  So we got home from the store and I went straight to it.

I never really push myself to hard.  Some days I stop before the pain starts.  Or I just tell myself one mile is enough or 20 mins.  So afraid to push just a little bit farther. Until tonight.  Tonight, I told myself I was going to run with out a break for a few mins and I didn't stop until I did.  My treadmill has a little track that lights up with dots and I told myself I was going to run half way walk a minuet and run the rest, and I did.  Half way thought the pain in my liver kicked in but then then I got a cramp in my foot and forgot about it.  I walked for a bit but then picked it back up.  It seemed like the more I ran the less I hurt.  And then I realized I had past that point.  The one where I usually gave up.  I did it.  I know I didn't run far or fast, but that doesn't matter to me.  What matters is that I ran and I remembered just how good it feels.  I used to run to ease my anxiety and stress.  But this was something different.  I'm excited to run again.  I'm looking forward to my heart pumping, focusing in on my breathing, no music, just the sound of my feet.  30 minuets uninterrupted.  Aside from feeling better mentally, I hope to lose some weight.  Walking last year didn't seem to do much for me and so I hopefully pushing myself farther will do the trick.  I plan on buying myself some new shoes after the first 10lbs are gone!  And I really want some new shoes!

But right now I'm gonna work on my sleep goals and head to bed.  After I make lunches for tomorrow.  Oh how I am looking forward to our usual routine.  Vacation is nice, but I'm ready for reality!  Bring in 2012!

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