Menu Plan 8•3•20

And its Monday.  Again.  Yay!

Im trying really hard to stay motivated and moving today.  I slept in a little.  But got up and took my meds, squeezed in some facetime with mom and my sisters and even had coffee and oats for breakfast.  I stayed up late yesterday getting things done so I would have less to do today.  I need to fold laundry and wash towels before the boys take over the laundry room.  And I have some cooking to do.

 

After a really rough week with my H.E, I have had to give up meat for the time being.  I have had a taste here and there while I was cooking or what not, but I have not sat down and had a meat meal since last Monday when I had a half a rib.  Last night I told David that I legit scared myself into an almost vegetarian.  I am still cooking meat for the guys but this week I am prepping a special meal for myself for dinners that I can't modify.

Lets check out this weeks menu!

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Doctor Diaries: January Follow Ups

OK,  It has been one hell of a week.  But it's almost over.  And then we are starting all over again, but I will gladly take a few days of no doctors.  I need to breath.  And plan.  And process everything this week has thrown at me.  I also need to stay off the Googles until I have an actual diagnosis or at least some more answers.

I usually kick the year off with a bang.  I try to get as many of my follow ups over with for the first half of the year.  Most are 4-6 months apart so it works. Lab work is more often.  Usually monthly if everything is good.  Sometimes its weekly or every couple of days when it is really off.  This week it was labs for 2 doctors and 2 doctor visits.  And it went a little something like this.

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Whats up, Weekend? 1•18•19

Oh boy it has been a week.  And I am so glad the weekend is finally here! Who else has been waiting all week for the weekend.  I hate to say that I live for the weekends, because every day is special and all that stuff, but, sigh, I really do love those 2 days.  Well 3 this week!

Today I'm linking up with Lindsay from The Flynnigans, Charlotte from My Pixie Blog and Beth from Coffee until Cocktails.  Every Friday we share all the things that we are happy, grateful and thankful for!  Stop on over and see what everyone else is sharing today! Here is my list for this week.

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A Spoonies Guide to Google Home

When David brought the idea of a "Smart Home" to me, Im 99% sure I laughed at him.  I mean, what even is a smart home?  I'm also pretty sure he told me that it was really for my benefit.  I can't deny it any longer!  I LOVE it!  I catch myself looking at things and saying, I wish this was smart home compatible.  Don't judge me, but how nice would it be to pre heat the oven from your phone on your way home?  Although Im not sure thats what he meant by, I would benefit.

What he actually meant was that adding the little gadgets to our home would make my life easier when it comes to living with chronic illness.  And as usual he was right.  I can't imagine not having all these little gadgets in my life. Last month we added a Google Hub to the line up.  And I am so in love with it.

So I wanted to share a few commands that any spoonie will appreciate!  Honestly, everyone will enjoy them but I think those living with a chronic illness will whole heartedly understand how great they are!  Here are 9 of my favorite things to tell Google.

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Liver Clinic Follow Up

I had my follow up at the Liver Clinic on yesterday and it looks like we are ending this year on a high note!  The doctor was happy with all my recent lab work and scans. We talked a little about everything, I got my flu shot and we were on our way!  But I thought I would share a quick little run down for those who wonder what these appointments are like.

I got checked in and they gave me my hospital bracelet. The hardest part of my appointment is always the waiting to get into a room.  We are supposed to arrive 30 minutes early but it usually takes a good 45 minutes before you are called back.  And there were quite a few people there this morning so I knew it would be a little wait.  As long as I have been doing this, I still get a little antsy while I wait.

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H.E made me do it

The plan was to go back to sleep after the boys left for school, but the house next door is getting a new roof and we are on day two of nail gun heaven.  Lucky me.  I tried to read but that's not working.  I had an omelet. That just made me nauseous.   Everyone is always telling me that the like how I can always put a positive spin on things or how I always see the silver lining.  Some days are more graceful than others.  And some days I lose my shit.  It happens.  Today might just be that day.

I think technically that day was Monday night, when I pretty much broke down mid Kitchen clean up.  I was trying to hard to hold it together.  I'm usually a wait until everyone is sleeping to cry kinda gal.  David figured it out and ended up hugging me until I was done.  Then he helped me finish cleaning up and listened to a few more colorful outbursts, wiped away a few more tears and sent my butt to bed.  I didn't fall asleep until after 2am.  I got a whole 3 hours of sleep that night.

For a few minutes I thought depression was creeping back into me.  Its always been around.  Worse at times, but throughout the most part of my sickness, I have been able to push through that darkness.  I have been able to focus on the good and the light.  Anxiety yes, depression, not so much.  But this felt like something more.  Something stronger.  And then it hit me.

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Whats up Weekend { July 13th }

I'm linking up with Lindsay from The Flynnigans, Charlotte from My Pixie Blog and Beth from Coffee until Cocktails.  Every Friday we share all the things that we are happy, grateful and thankful for!  Stop on over and see what everyone else is sharing today! Here is my list for this week!

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Cardiology Follow Up

I feel like I am always starting these updates with "I know its been a little quiet around here but..."  I really need to work on that.  But the past few weeks have been stuffed with trips to the doctor and I have had a hard time getting words out of my head and written out.  I have had a hard time getting them out of mouth even. But here goes nothing!

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Liver Clinic Appointment

I had my Transplant Clinic follow up on Monday.

It was a little different than usual.  I was alone, had had no routine scans or test done and I had never met this Doctor before.  No worries.  OK, I was a little worried.

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Just smile and nod...

Today, I really struggled to make sence of my words. I slurred, words came out all jumbled and I felt like my hearing was delayed 3 seconds. I had to think about everything someone said to me. 

At dinner the boys were trying to tell me a joke but at the time it just felt like they were laughing at me because it took me a minute to understand why they were laughing. One minute I wanted to cry and the next minute I was laughing so hard that I was crying.

I get so frustrated on days like this. Days where I look back at my snapchats, insta stories and other posts so that I know what went down that day. But now that everyone is sleeping, and Ive had time to look back on the day I can find reasons to be thankful for them too.  

One of the boys would say something and when I couldnt answer, they would just drop it and move on. When we were driving home, I caught David sneaking looks at me over and over. But mostly he just smiled at me. There is nothing more embarassing than feeling like a fool in front of the people I love the most. Expecially when I am usually so good at holding it all together. But I cant believe I would think they were being intentionally hurtful to me when they have been nothing but patient and understanding. They love me on the good days and the bad.

I paniced a few times when I turned around in the stores and they werent there. Alex had a death grip on me pretty much the whole time but when we stopped at Buckees and both boys went to the Mens room with David, I had to take a minute to gather my bearings and remind myself of where I was. I am almost never alone. It makes me feel like a lost child. How embarassing.

I have not been taking my medication as I should be. The doctors want me to exercise so 3 days a week we hit the gym. The other 2 days we are back there for swim lessons.  And between doctors appointments and errands, I just keep putting it off. One dose equals about 4 hours of the stomach flu. And Im supposed to take it 3 times a day. Yeah, I have no time for that. Thats what I keep telling myself anyways. I was taking it twice before school got out. Then once a day.  But Im so tired and it is so hard to take something that only makes me feel even worse.

The double edged sword of life with chronic illness. 

Because I havent take it in a few days, my brain is sluggish and now I am mentally exhausted too. I had to stop reading my book because I cant retain what Ive read and have to keep starting

I hate feeling like this. But there is a very good chance that tomorrow, I will not even remember how Im feeling right now and so Im writing it out. Not for any other reason than that days like this are the reality of my life with chronic illness. And because there was a time I had all these exact feelings but had no idea why. It was scary having peices of your day gone, forgetting things, not being a not being able to make out full and complete senteces and having no clue whats going on.

I finished my cup of tea and I guess its time to call it a night. I am going to sleep off all these emotions. Mornings are lifes clean slates. Even more so when you can't remember what you did the day before. Joking! I might lose my memories but never  my sarcasm. Ok, no more jokes. 

Hopefully this all makes sence in the morning. I apologize if it doesnt and you've actually made it this far.  Heres to an amazing Sunday to end the weekend.

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H.E. is back! Did he ever really leave?

Its been a really frustrating few weeks.  For a while there, I was sure I saw the light at the end of the tunnel. Getting closer and closer.  I felt like I had a pretty good grasp on life and was feeling stronger.  Life with liver disease is so unpredictable.  And that light at the end of the tunnel, was just a train coming to run me down. The H.E. Express!  Hepatic Encephalopathy is the devil.

I have been trying to write this post for weeks.  But I always get angry and end up sitting here in tears wondering why me.  And I don't want to do that.  That's not me.  The real me smiles and says "better me than you." I can't even begin to wish this on anyone, especially someone I know.  I would gladly take this if it means my family is healthier than I am.

So what exactly is going on?  What is life like these days?  Well, its been cloudy.  Slow.  A bit repetitive. And very lonely. If you know me, you know my answer is always " Im fine."  I used to feel like I could share the truth.

Then I let a few comments and reactions, make me feel guilty for sharing so willingly.  I felt like the people I wanted to care, didn't care to hear it anymore.  And people who I didn't even know, wanted to know why I was even sharing such dark things.

The shock on my diagnosis set in and everyone else lives wen't back to their normal.  Except mine.  I didn't get better.  I was still scared.  I was still sick. But I still had a life to live.  Kids to love and take care of.  A marriage that was cracking under the pressure. A family to hold together when I was barely holding myself together.

After a few years of this I have learned triggers for HE episodes.  I hardly ever eat red meat.  Still cook it and drool over it, but only allow myself a few bites.  Big meals and animal protein usually set me off real quick. Lately I have been living off of (plant) protein shakes.  I always have water with me.  Taking my medication regularly has been a struggle but I think we got it all worked out.  One makes me sick and the other cost almost as much as my mortgage. I still try to play it off.  David and the boys however have learned to read me.  And they are quick to tell me I am not being myself.

Remember my first HE scare?  I forgot where I was and who I was with.  It was the single most terrifying moment in my life.  For a few minutes, I didn't even recognize my own husband.  Life with H.E. isn't easy. On a good day, I never even know its there.  Some days, the boys will tell me that Im "smushing" my words together. Sometimes I slur.  I don't think I have even done anything inappropriate.  Sleep problems...check! My hands don't flap, but they are shaky. It takes a lot of lists and alarms, but I am still able to keep up with most things. Its scary though, how bad I can get at times.

Things have changed a bit now that the boys are home for the summer.  I don't like turning the stove on because I am scared I will forget to turn it off.  I wake up out of a dead sleep to check on the boys, the dogs, the doors. That is if I am sleeping at all.  My sleep the past two weeks has been 3 or 4 hours a night if I am lucky.  I got lost in my own house.  I don't trust myself to take them to the pool alone anymore.

I have been carefully holding myself together for the last few weeks with the boys home.  I don't want them to see me stare at a wall and cry because I can't for the life of me remember what I was doing.  Its bad enough they feel like they have to check on me constantly. Disheartening isn't the right word.  It kills me to feel like Im letting them down.

I have slowly been coming out of what feels like a thick fog.  At times, I feel like a child.  Talking myself though everything I do so that I don't forget what comes next. The other, I reached in a frying pan with my hands, more than once.  Today, I feel more like myself.  I was up before my alarm and took my meds on time.  A few months without them had me drowning.

I put my meds on auto refill.  I accept the fact that I need them.  Just knowing how they are going to make me feel makes it a little harder to swallow, but feeling like I have the flu is 100 times better than what happens when I don't take them.  I know that.  I will be better at taking them.  Making them a priority.  Sometimes I just want to say forget it all and just be normal.  But the thought of more blood clots and a coma get me right back on the straight and narrow.

Life goes on.  This morning the boys both told me they were happy I was up and walking around.  We cleaned up together and spent some time out back before they did their chores.  I did take my medicine today and while my body is hurting, its the first day in a long time that my head feels clear.  And its only taken me 2 weeks to get post this written.

I feel like I should have started with a warning that there is a chance this will not make any sense at all. But Im scared that If I scroll up I will get distracted and I won't push publish.  It is what it is.

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Today I won!

A photo posted by Kim (@kmunoz28) on Jul 7, 2015 at 6:33pm PDT

Some days I can get through the whole day feeling like I'm winning. Like my illness isn't in charge.  And some days no matter how had I try to focus, I just can't get things together.  Monday was one of those days.

As soon as David left for work I started cleaning.  I was expecting  company so I knew it had to be done.  I unplugged from one room and plugged in to the living room.  The doorbell rang so I stopped to answer it.

As I was saying goodbye to my friend I noticed a free limb hanging doen to I grabbed the clippers and trimmed it.  Since I was out there I cut a few more branches.  3 hours later my friend was back to pick up her kid and I was STILL cutting branches.   Thats when the bees got me.  One in the neck and one at the back of my head.

I ran inside to get some ice and a drink. After in rinsed my glass out I figured I should wash the few dishes that were in the sink while I was there.  Half way through I remembered that I didn't shut the garage door.

I went out to the garage and realized I had left my phone out there playing music. And the clippers were still in the yard. When I went out to get them I figured I should bag up the branches I had cut down. An hour and 3 bags of branches later, I remembered my phone in the garage. 

My alarm went off, reminding me that it was time for my meds.  Which reminded me that it was dinner time. Go figure the day that I lose track of time is the meal with the longest prep time.  I made the bread bowls  and started the chowder.  I took the last dish towel out of the pantry to dry up dishes with and figured I should wash towels. 

My feet were swelling so I sat down to rest for a minute and read a few chapters of my book.  The time went off on the stove so I went back to the kitchen and finished up dinner.  We ate and got everything put away. I even finished up the dishes. 

After a shower I took some leftovers to the neighbors.  Came home and finished up yesterday's post.  An alarm for the dogs meds went off and I remembered then I hadn't taken mine yet either.  After we were all medicated I was worn out.  I watch a show on TV and then went to lay down. 

I was just nodding off when David text that he was leaving work.  I got up to make sure the house was straightened.  I remembered the boys bikes were still laying in the driveway so I put them away so david could get in the garage. When he got home we took out trash and I went back to bed to read while he had dinner.

Next thing I know it's 4am and I'm still reading.  I got up to brush  my teeth and wash my face. Only to realized that I had put all the towels in the wager earlier and never transferred to to the dryer.  I looked in the mirror and called myself some names. Dried my face on my shirt and went to bed.

Today was such a better day. I found enough energy to go for a scooter ride with the boys.  They both thanked me for riding with them.  Lex told me he loves it when I act like a kid and play with them.  I really do try. I hope they know that.

I pushed myself and I made it through today.  Monday may have been a loss.  But today I won! The towels however, are still in the washer. 

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The Grief Cycle

The past few weeks I have been struggling to keep my head straight.  It was hard to focus and my memory was wrecked.  My brain was a giant mess of random thoughts. Now that my medications are settling in and have worn me down to complete exhaustion, my thoughts are finally coming together. And just when I thought I had accepted my illness.  For the 100th time, I feel the grieving process starting all over again. Denial, Anger, Depression and Fear.

Its been an emotional roller coaster for sure.  I have really put David and the boys through it all lately.  You know that Android commercial with all the different animal friendships, I cant even hear the song with out wanting to cry. I have been short with the boys and refused to let David into my Pity Party.  Sometimes I do the good old fake it till you make it. Denial! Not because he wouldn't be supportive but because I hate bringing him down. When what I should be doing is holding on to them for dear life.  For they have yet to let me down.  At the end of the day, its the 4 of us here together.

Last week I was feeling awful and in my head I was debating on calling in to the clinic.  Ive already been told what would most likely happen.  And being admitted is something I am trying to avoid like the plague right now.  But I remember telling David not to tell anyone.  Making him promise not to call people if I had to stay. Because I honestly felt like it would be a burden to them.

Living with a chronic illness has got to be one of the loneliest things in the world.  There is nothing you can do to cure it.  You never intended to get sick.  Never believed it would happen to you. And then it does.  In the beginning, your family and friends rally behind you.  Not a day passes with out someone showing genuine concern for you.  You find comfort in that.  And maybe feel a little guilty or embarrassed but it gets you thought one of the hardest times in your life.

But then the support slowly dies off.  People get back to their lives and you try to do the same. Except you are still sick.  Life does not stop just because you got a big scary diagnosis.  It doesn't stop when you are in so much pain you don't think you will survive.  Or when you are feeling like the biggest burden to your family. Sure there are some good times scattered in between all the bad, but you know one day it will be the other way around. And  you wonder who would really be there for me if I needed it.

A quick way to find out who your real friends are is to get diagnosed with a chronic illness.  

Some days I don't think I could even text people and check on them.  And sometimes, I do and I don't even know it. I'm not saying that I have been the person.  I am on both sides of this too. Sure I could reach out to a lot of people.  And I try to as often as I can.  Usually a week or two will go by that I don't check in with someone in the family or in my close circle of friends.  Healthy or not. I'm awful at calling people back.  Id much rather text or email. But sometimes even that is hard. So in no way am I trying to say I am better at any of this than the next guy. This is just me. Clearing my head out.  Anger?  I realized its the people who I most wish would ask how I am, are the ones who don't.  But I have been learning to just be ever so thankful for those who do. I have been blessed regardless.

Maybe its just something you have to experience to understand. Maybe I'm just being dramatic? Who knows. So whats next?  Depression.  But I'm hoping to just skip that one.  Fear never leaves. Sometimes I can forget about it for a day or two but it is always there.  Rinse and repeat. Tomorrow will be better. The ups and down wear my out but nothing can stop me from smiling.

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This is my normal. This is my life.

I always try to stay positive.  Most days I don't realize how limited I am.  This is my life,  I'm used to it.  But after writing down things like "I don't ever leave the house alone." and "I don't usually cook unless someone else is home to make sure I turn the stove  off or to help in case I cut myself and can't atop the bleeding." for a disability review has my stomach in knots.  Having to take a good hard look at your life and realizing just how different my life is was like a kick in the gut. David tried to comfort me and remind me that none of this is my fault.  But I think it's something you just don't get until you it happens to you.  And I don't wish this feeling on anyone!

It takes every ounce of energy to focus on what I'm doing and not get distracted.  And without my medication it's almost impossible.  Medication that clears my brain but destroys my body.  Medication that cost more than I spend on groceries.

Last night was all wrong.  I put the boys to bed with any last bit of clarity I had.  I told them I was going to run the vacuum real quick.  I plugged it in the dining room and grabbed the dishes off the table and took them to the sink. I remembered  Walter needed his pain meds so I got mine out too.  Rolled his in cheese and he gobbled them up. Went to the bathroom and remembered I had towels in the dryer so I sat on the couch and watched tv while I folded them. I dozed off.  Woke up.  Put the towels away.  Laid in bed and then realized  I forgot to take my medication.  So I got up to take them.  turned off the lights.  Text David, checked fb and instagram went to bed. Only to jump up a second later to unplug the vacuum that I never ran. I laid down and read for a minute before falling asleep for the night.  Didn't hear David come home or get in bed.  Out like a light!  The three hours I spent chasing my tail had worn me out. Some weeks I can't sleep and others I can't stay awake.

Alex doesn't know the old me. Anthony doesn't remember much. We used to spend afternoons at the park and run around for hours.  I was patient and more present. And I never second guessed myself being home alone with him all day. I baked and cooked without a worry.  I am beyond blessed with boys who can be independent  when they need to be and are learning to help out more. I know it's a lot to ask of them. And I hate that I put that burden on them. But I think at the same time it teaches them responsibility and respect.  They are learning how to pick up after themselves and clean properly.  And even how to cook. All life lessons that seem lost on so many young adults these days.  They are learning that life isn't handed to you on a silver platter. And that if you want something  you really have to work for it. 

Even writing has become hard. I keep getting off track and starting new paragraphs. My spelling gets so mixed up and I don't even know what I was trying to say.  Anthony just came over to let me know that he warmed himself up dinner and that he put away the water I forgot on the counter last night. And that he will feed the dogs.  I'm sitting here hoping to finish this so I can share it before I get side tracked and it stays here like the other half written  posts on my phone. ** I didn't post right away. But I did get two loads of laundry and my bedroom cleaned before coming back now** I've been trying to finish an instagram post for the last 9 hrs too.  Done.  Finally!

Going out during the week with out David or my mother inlaw is rare.  Last week a friend picked me up and we went shopping.  I felt normal.  Thursday we are going to get our hair cut and to lunch on friday.  Moms do these things. It blows me away that some moms can just decide to go shopping and go.  I can't drive.  So I can't go anywhere with out planning ahead and asking someone to drive me.  Having friends who are willing to drag me out and along with them makes me feel so regular.  Its like being able to pretend that everything is ok.  Some people look at the rich and the famous and wish it were them.  I look at the overwhelmed multi tasking soccer moms in movies and that's who I want to be.  I want to drive though a Starbucks on my way to the boys soccer practice. I want to go to the gym.  Or have spur of the moment lunches with my girls.  To be able to go to the store when I forgot an ingredient  for dinner instead of having to ask my neighbors...again.  I want to be able to say I'm going to do something with out myself or someone else doubting me. 

But this is my normal.  This is my life.  The days I spend feeling sorry for myself are thankfully few and far between.  I just hope that someday I will get to do these things.  This is just the present and there is no telling what the future holds for me.  I just hope it includes a driver licence, Starbucks and a trip alone to the library!

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Update of Sorts

Not my typical Wednesday post but I figured I have a few minutes and since my phone is being a pain and not letting me upload my pictures, Id get this out of the way.  

Yesterday was my liver clinic appointment.  Although, I'm not sure I would call it that much.  It was more like a meet and greet.  The Doctor shook my hand and that is the only contact we had.  No abdominal exam. No checking my breathing even.  The nurse checked my stats, so I do know that my blood pressure was a good 106/64.  And now that my appetite is back, I've gained back the 6 lbs that I lost last month.  Not a big deal.  I was so caught off guard and felt so rushed that I didn't even mention the shortness of breath to him. Or the bloating.  Which could have been brought up when he did my exam, except that never happened. After a 2 hour wait for a 6 minute appointment, I was just to out of it to even think straight.  I feel asleep somewhere in there.  Something that happens a lot these days.  Another thing I should have brought up.  I did bring up my mood swings to which he laughed at.  Never got an answer there either.  

But there was good news.  My last scans show no cancer.  My liver and spleen are still greatly enlarged but that's not news.  My labs were good.  My liver is diseased, and while it is not functioning as well as it should be he said it is not failing just yet.  And until it does, I will just keep doing what I'm doing.  Waiting. I've been doing this for the last six years.  But hearing that you are not sick enough yet to be helped burns like a slap in the face.  EVERY. TIME.  

So here I am.  Writing this out.  Waiting for my meds to kick in and knock any energy I have left right out of me.  Praying that I am able to pull it together and pick the boys up from school.  Keeping a mental reminder that I need to get the house cleaned and dinner started.  All while feeling like I am stuck in slow motion and I'm not going to be able to get any of it done.  I spent the morning reading and trying to refocus on the things I need to pay more attention to.  The boys, David, the dogs and the house.  These are the things that matter now. They are the ones I am doing this for. 

I still have to call and schedule another mammogram as there are even more lumps that the doctor is concerned about.  The last one was nothing so I am praying these are the same.  I will call the liver clinic to see what the results of my blood work were and schedule the ultrasound they ordered.  And on Friday I have an appointment with the hematologist.  I swear I can't catch a break.  But I can't sit here and let it eat at me.  I usually do pretty good at keeping on the bright side but every now and then I have to pull my self out of the dark and remind myself that I could be worse.  It is what it is and it really isn't that bad.  

I'm beyond thankful for all the support, words and prayers that everyone sends me.  I was glad to have David there with me even if he is still laughing about me talking in my sleep.  He thinks hes funny, that man! But I love him for keeping me smiling when all I wanted to do was pitch a fit like a 4 year old.  Despite all the craziness, I am beyond blessed..

I am still debating on switching transplant clinics.  But I am loyal to a fault.  I have been seen here for the last 6 almost 7 years.  And have only had problems the last 2 years or so.  There is only one doctor I care to see who actually gives me the time of day and his full attention.  Do I stay or do I go?  Can I?  I have no idea what to do. Time will tell.  No decisions till after the new year.

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Define Disability...

If you have been following the blog for a while you may have heard me talk about receiving Disability Benefits. I don't talk much about it because I have gotten a bit of backlash for it. I didn't apply so I wouldn't have to work. I did it because there is no way I could go back to work and keep myself as "stable" as I am right now. And surviving on Davids income alone seems impossible. I had been planning on going back to work just before I was diagnosed.

Today I got a letter in the mail stating that my case was under review. I stared at the pages on the packet I have to fill out. I remembered how small I felt in that courtroom asking for help. How scared and embarrassed I was. Even though I had a whole team of doctors behind me, supporting me. Even with David beside me reminding me to breath and to stop laughing out of nervousness. What I really wanted to do was curl up in a ball and die. It honestly seemed like it would be easier. Being questioned about things I was just learning and not having enough confidence to fight for myself. It was awful. I was denied. And after my lawyer pushed back, we won. I feel all those emotions coming back to me as I write this. What if I am denied again.

I would love to be able to work a full time job. But I'd have to stop taking my medication and my encephalopathy would only worsen. Yesterday I made banana bread, turned the oven off but never took the bread out of the oven. I've locked my self out of the house and left the stove on. I have cut myself, fallen, gotten lost and forgot who I was. I've become hesitant to leave the house. I dread it. But I try to make the most of my good days. I can volunteer with the Rescue every chance I can. David drives me and is ready to pick me up as soon as I call him. I spend soccer practice in the car because I worry that I look as bad as I feel. I put on a smile as part of my outfit for the day even though on the inside I am an anxious wreck. I deny help because I hate that I need it. Do you know how hard it is to be a good parent when you are so unsure of yourself? When your mood can go from hot to cold before you can even catch your breath. Have you ever been so mentally exhausted because when you kids are home you are constantly keeping track in your head of where they are and telling yourself they are fine. All while trying to double check everything you are doing so you don't screw something up

When I get home after school my thoughts go a little something like this.

Ok it's 3:15. Is the garage door closed? Doors locked? How many kids do I have? One. Two. Three. Where is Grandma? Backpacks!! Folders. Oh wait, whats for snack today? Did I make something? OH crap I hope I turned the oven off. Where is everyone? Backpacks! Folders. Folders. Folders. OK everyone has their folders. What was for snack again? Wait! Did I eat today? I should eat something. Did I put the clothes in the dryers? Dinner, whats for dinner? Oh hey look someone commented on my FB picture. Wait, when did I share that picture? Oh I forgot to text so and so back. Oops David text me 2 hours ago and I never hit send. Sorry Baby! What was I doing? Where are the dogs? Oh right behind me. Where are the kids? Guys?!?! Anthony is in his room reading. Alex and Eva are finishing homework. OK. Crap!!! Guys! Come get your snacks! Sorry. Dinner. I need to start dinner. Practice in 3 hours. Wait where is the soccer bag? ANTHONY!! I should text Grandma and see if she can watch Alex. No energy to play soccer with him at practice. Dinner, right. Wait GUYS! Where are you? Homework now! OK. Dinner. First water. Feeling a little queasy. I never ate did I? Breath. What time is it. 3:30. Focus Kim.

Sometimes I catch myself just pacing back and forth with my hands on my hips trying to figure out what I am supposed to be doing. By the time I start dinner I am done. And that's just in my head. If only I could give you a run down of my medication and the side effects. Maybe someday. But its something that has to be done and I am determined to do it until I physically can't anymore. That sounds a little stubborn, but I know what my future holds. I know I will miss dinners because I am in the hospital. I know that there will be weeks where I can't find the strength to make dinner. I try to remind myself that cuddling them a little longer, read another chapter or at least sit with them while they fall asleep because there will be days that I will miss it all. Even the meltdowns and arguments, I know I will miss them too.

But for right now, I am just going to fill out theses form, have faith in the doctors and my own decisions.

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2013 Highlights

Before we close the door on another year, I just wanted to take a minute to share a few things we did in 2013.

 Soccer!  It was amazing to see Anthony improve in just two seasons.  Watching him practice and then seeing his hard work paying off made me so proud.

 

There was a flow constant flow of Foster dogs this year

Haiku.  She started a love for huskies in Alexanders heart!

Bruce Wayne the Dane

Sweet baby Marie

My niece Jamisen turned one.

Jam Jam.  <3 her!

We had some awesome adventures this year.

Exploring at the park

Despicable Me 2.  Both boys actually watched the whole thing!

I have a crush on Ballapeno.  Clearly he likes me too :)

Road trip with the boys and dogs

Poncho met some cows

Hayrides at the Rio Cibolo Ranch

Anthony started making dinner once a week.  Lots of homemade pizzas and spaghetti this year.

And I realized that my baby isn't a baby anymore. In 2 weeks he will be 5!!

It was a great year.  My family is happy and healthy.  The boys are growing into little men.  With opinion and ideas of their own.  David was finally put on a better work schedule which meant he was home for dinner more than just a few weeks this year.  I made friends.  Last year I made a goal to be more social and not let my illness hold me back and so I did.  It might seem silly to some, but being pretty much house bound gets super lonely at times, so its a big deal to me.  I said I would not let my illness stop my boys from doing things they wanted to do and with the help from my family and friends, we did so much more this year.  Specifically Soccer.  That was pretty much the highlight of the year.  We are blessed.

As for me, health wise, I have been doing great.  Stable is what the doctors call it.  My liver function is still ok.  The nodules on my liver have not grown.  I have not had any major problems with my blood disorder.  I did have a scare, but and early mammogram showed us there was nothing to be worried about.  And I have been able to stay on top of my Encephalopathy so my head has been foggy but nothing too bad.  All this together means, less lab work and more time off in between doctor visits!  WIN!

Now we look ahead to all the new year has in store for us.  This is the year that Alex starts school.  That will be the big thing for us this year I think.  And soccer!   Here is to a year full of good health and lots of laughter.  To new friendships and more adventures.  I'm so ready for this!  Hello 2014!

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Red flags and alarms.

Lots of little red flags going up over the past few days.  My balance is off.  Nosebleeds.  Head and muscle aches.  Fatigue. Loss of appetite. Last week was rough.  Saturday was better, and Sunday I felt amazing.  But come Monday, I was nervous.  I had to literally roll out of bed.  Managed to get lunch pack and Anthony to the bus stop on time.  Luckily David was going in late so I was able to rest until noonish.  But by the time he left at 2 I wanted to beg him to stay.  I have always been so good at sucking it up.  Yesterday I just couldn't.  

Luckily for me my boys are amazing when it comes to mom having a bad day.  Alexander cuddled in bed with me until my alarm went off to go to the bus stop.  So off we went, still in our pajamas.  You couldn't have paid me to get out of my sweats yesterday.  Got home just in time to bleed out of my face and get back it bed.  The boys hung out with me for a while.  I got a foot rub from one and the other made a fan to fan me with.  They really know how to treat a woman!  After a good 30 minuet rest until another alarm reminded me that I had to get up to make dinner.  I made some dessert.  The boys played for a while until another alarm rang out.  "Meds!"  The boys call out to remind me to take them.  This also meant bath time.  Another alarm at 7:45 sends Anthony to bed. Sweet Dreams!  Can you believe they went a whole day with NO fighting.  Thank the Lord for that! Alexander and I crawled back into bed at 10.  He passed out and I stayed up for a few more hours.  Big mistake.

This morning, I heard my alarm go off.  I hit snooze and closed my eyes for a little longer.  Then I got up and went to the bathroom.  I sat on the side of the tub and looked down at my phone.  6:39.  WHAT?  Then the alarm to go to the bus stop went off.  A ran to Anthonys room.  He was snoring away!  Talk about a rude awakening.  We rush but there was no way we were going to make it.  So we just slowed down.  Today he has a big reading test, so I'm hoping that the extra 30 mins of sleep will help.  The walk to school sure woke him up.  He was full of questions this morning though.  We walked and talked about why I didn't feel good.  Poor kid apologized for sleeping in and me having to walk him to school.  I explained that I should have been up earlier so he was not at all to blame.  It actually ended up being a great conversation and hopefully he has a better understanding of my being sick but not looking sick.  Ill save the deets for another post though.  It deserves it!  

Now to finish my grocery list and see who can take me shopping.  Just another reminder that I am unable to do things for myself.  But instead of feeling sorry for myself, I am going remind myself of how blessed I am to have people here who are willing to help.  You have to look on the bright side.  Otherwise life will swallow you up!  Here is to hoping the week only gets better!  Much love!

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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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My first "live" Q&A!

I always tell myself that each month I have to step out of my comfort zone at least once.  Do something different and new.  Something that gets my blood pumping.  That's always a good thing right?  So when my friend Cody asked me to speak to her class, I agreed.  Let me just say, nervous doesn't even cover it.  Cody and I went to school together.  She looks exactly the same too!  Just for fun, here we are.  Class of 2000!!

I sat here for 30 minuets trying to pump myself up and calm my nerves.  It was so much easier having a familiar face there when the video started.  I may or may not have laughed way to much, sorry guys, I'm a nervous laugh-er.  Its laugh or cry for me.  And I wasn't about to cry.  Thankfully there was not as many people as I was thinking there would be and I actually had a lot of fun. I hope it helped them.  I know it helped me.  Someday I want to be able to stand on a stage and tell my whole story with out feeling sick to my stomach.  I can write it all out here but once there are people looking back at me, my palms start sweating.  They had some really good questions though.  And I answered the best I can.  

It also reminded me that I started this blog to share more about my life and what its like living on the transplant list.  I've been horrible at that.  But I'm refocused and ready to roll.  Next month is The Health Activist Writer’s Month Challenge.  So I have already started my 30 posts for the month.  Plus a few other fun things, so I will be hanging out here more often.

I wanted to take some pictures while I was talking, but I also didn't wan to look crazy.  If anyone on the other side got a picture of me I'll trade you for a Hope for Kim Bracelet :)  My sister got a shot of me though.  Thanks Bug.  And a big Thanks to Cody and the class for having me and for all the great questions. If you are reading this and think of any more, feel free to ask!

I hope everyone has had a great week so far, its sprinkling and gloomy outside. But its better than the cold that blew through the past few days.

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