Cardiology Update: February 2020

One of the hardest things. If not the hardest thing about living with an invisible illness is that no one else REALLY sees it. You say you're tired but you still show up for things. You say you don't feel good with a smile on your face. You don't look sick so people don't know how sick you really are. I struggle with this a lot. Even on the worst of days, I smile, laugh and joke around.

For the past few months though, I have been struggling to keep my head above water. I have been short tempered, permanently exhausted, I cant catch my breath, everything hurts and I was feeling bluer than blue. I put up a front and dealt with myself behind closed doors. During the day when I was home alone or at night after everyone had fallen asleep. I sat crying in a closet and sobbing in bed because how the hell is anyone supposed to live like this?

And then came today. My cardiologist follow up where I was expecting to get my results from all my tests and heart monitor. I wanted to cancel it because going to the doctor in a foul mood never ends well. But I needed to know so I sucked it up, slapped on a smile and showed up. Early even!
When the Dr comes in she said "Well everything looks pretty good. I know we didn't get a full 48 hours on the heart monitor but we will talk about that later!"
So good news first I guessed.

Read More

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.

Read More

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.

Read More

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.

Read More

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.

Read More

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!

Read More

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.

Read More

This week...

I know it's been a little quiet around here lately.  I've kinda just popped in and dropped a post here and there.  But it has been a challenging few weeks.  Hell, a hard Summer actually.  But as we come to the end of Summer break,  I am trying my best not to have any regrets, especially over the things that I can not change. Which seems to be almost everything.

This summer I have had zero energy.  I have been sick more than not.  And I kinda just lost my fight. When people ask how I keep it together, I tell them that I have to push myself.  When they ask me why I push myself, I say because if I don't Ill fall apart.  Told you so.  I have pretty much hit rock bottom when it comes to the will to stay healthy.   And by healthy I mean as far as my illnesses go.

So here is the problem.  Energy...still at a zero.  To do list...a mile long.  What is a sick girl to do.  Well first I am going to buy some big girl underwear.  Then I'm going to get to work.  That was the plan on Monday anyways.

Monday, Chico went back to the Dr.  Just for vaccines, for now.  He was recently diagnosed with a perineal hernia.  Because of his age and his anesthesia complications, we are not able to do the surgery to repair it.  So we are loving him extra hard for as long as we can.  And we will have to say goodbye when it gets to be to much for him.  Our hearts are broken, but his life has been full of adventure.  When we got him we were still just teens, right out of high school.  He has been there to watch over both boys as they were babies and he and Poncho are the best of friends.  Life will never be the same when he is gone.

Tuesday, I woke up in a serious panic.  The right side of my face was numb.  my arms and legs were tingling. First I called the transplant clinic, because they always say to call them if there is every anything I need.  By 1pm it was a little better and I had errands to run, so I did.  When I got home and still hadn't heard from the clinic, I called my hematologist and got a call back shortly.  She said if it got worse to go to the ER but if not to come in the morning and get my labs done.

Wednesday morning she sent me to admitting to get my labs done right away.  After wards I went up to do labs for the transplant clinic.  Even if they hadn't called me back yet.  Rude.  But I need to keep them updated so they can calculate my MELD score and keep me on the transplant list.  Went back down to my Drs office, both arms wrapped up.  She took one look at me and sent me on my merry way...to the emergency room. Where I spent the next 7 hours getting every test in the book and never getting into a room.  It was nuts.

Thursday was spent relaxing and babysitting. Pretty much I took it easy and they played all day.  Another friend came over to keep me company and make sure I was OK.  I always wanted 6 kids.  Yesterday was a glimpse of that old dream.  We watched the Olympics and a movie.  It was actually a pretty good day.

Today, I got my morning dog sitting duties done and got dinner in the crock pot.  I need to clean up the kitchen, call in an appointment to neurologist and then I'm gonna take a nap.  I'm tired.  Just mentally and physically drained.  My liver is angry because I thought I could have a few bites of pork.  Silly me.  Meat is for everyone else but me!  Lame.

The good news in this all is that after Xrays, CT scans, and ultrasounds there are no new clots.  Blood work shows everything is as good as can be.  Even my liver function tests were better than usual.  So even though the week kinda just sucked all around, It was a win in my book.

My mom would probably get mad at me for joking but this is what I told myself.  It's not about having a sick sense of humor. Well I have that too, but this is life with a chronic illness.  One day you are good, the next day you are grumbling your way through the hospital to the ER.  Said things under your breath like "doctors aren't the boss of me!" and "ER!  Ain't nobody got time for that!"  I walked there like a kid who had just got grounded.  

So that got longer than expected.  Hopefully it makes sense, because I all out of thinking juice and I'm getting a little loopy here.  My bed is calling me!

Wishing you all a wonderful weekend.  Do something amazing and then come back and tell me all about it so I can live vicariously through you for a minute!  Next week will be better!

Read More

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.

Read More

Rare Disease Day 2016

Today is always a day that hits me hard. It's eye opening and a punch in the gut. Inspiring and disheartening all in one. It's a day that finds me thankful and sad. 

Today is Rare Disease Day.

When I was diagnosed with Budd Chiari Syndrome, my doctor told me it was a rare liver disease. I had no idea what he was actually telling me. What he should have said was something like,

You will lie awake at night and wonder what life is like with this disease. And for years you will not know anyone else with it. 

Some days you will hold you babies and plead with God to let you have a lifetime with them, knowing that time is something you might not have.

One night you will finally find a blog, by a person who has Budd Chiari Like you, but you will notice there has been no posts for years and you will assume the worse.

Doctors will tell you what it's supposed to feel like, but you will also be the only patient they have ever treated with this disease.

You will feel alone, even when your friends and family surround you in support. Because not one of them knows what it's like. 

Some days you will be so full of hope that you feel like you could take on the world, and the next day, you will feel defeated and drained of the hope you had the day before.

And eventually when life goes on, the devastation of "being sick" wears off on them and slowly but surely you really will be alone. 

Yeah, that's what he should have said.

But he would also have to tell me that someday I would decide to share my life with Budd Chiari Syndrome. That slowly but surely people would find my blog and other social media and they too would have this rare disease. And that over the years I would befriend some amazing people who knew exactly what I was talking about.

They understand that stabbing pain. They understand the frustrations of taking a medication that only made you feel worse. The monthly and sometimes weekly blood draws. We are a rare bunch. In all different stages of the disease. Some were instantly sick. Some had transplants immediately and others only shunts. One had a transplant only for the clots to form again! Many of us are mothers and wives. Some are more active than others. We are all different yet the same. Because we all belong to a rare club. And suddenly I wasn't alone anymore.

So how rare is it? Honestly, as much as I have looked I cant find a solid answer. I do know that as far as patients who are listed for transplant due to Budd Chiari is 111 plus me. In the whole US. I'm sure there are at least that many people who like me have no idea they even have it. And in our FB group there are a whopping 320 of us from all over the world.

I should add that my Budd Chiari Syndrome was caused by a blood disorder that only 0.01% of Americans have. I am homozygous for the Prothrombin G20210A mutant form of Factor 2. Sounds fancy right?

If you or a loved one have been diagnosed with a rare disease a be sure to check out Global Genes and NORD. Ask your doctors, if there are any support groups or other resources they recommend. Remember that there are going to be good days and bad.  There is a whole community of other rare diseases here to listen and share stories with.  Do that.  Share your story.  Because you never know if there is someone else just like you, worried that there is no one else out there like them.  You are rare, yes, but never alone!

Read More

Menu Plan Monday: November 9th

I have been non stop today. But so much got done that I wont even complain about swollen feet, broken nails and a sore back. Seriously i feel great! 

It has been so long since I've gone to lay down and felt happy because I know Im waking up to a empty sink and a decluttered house. I also got a lot off my mind and heart today too. Today was cleansing in so many ways today.

But its Monday and so lets get down to the good stuff. FOOD. That's about the only thing I didn't do today. I had a grilled cheese right before I picked up the boys and I may or may not have a Zebra Cake on my nightstand.  Don't judge me. 

This weeks menu!

Monday:  Leftover chicken and rice what ever veggies we wanted out of the fridge. 

Tuesday:  Grilled steak tacos. I love to grill but sometimes I just love my grill pan even more!

Wednesday:  Meatloaf with roasted potatoes and honey glazed carrots (thanksgiving test recipe)

Thursday:  Panko crusted pork chops, Trisha Yearwoods mac and cheese (thanksgiving test recipe) and broccoli

Friday:  Leftovers. The boys asked for fish sticks if there is any leftover macaroni.

So there's that. With 25 minutes to spare!  I will be back tomorrow to put in links. I think I'm finally coming off this caffeine high. Time to read a little and then call it a night.  

Are you adding any new dishes to your Thanksgiving menu this year??

Read More

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. 

Read More

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.

Read More

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!

Read More

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.

Read More

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.

Read More

Dear What doesn't kill me.

Seriously!

Everyone has heard it or said it. What doesn't kill you makes you stronger. But is sure does wear you down. And sometimes I am so busy taking care of everyone else I forget to get it all off my chest. I'm not complaining.  Being able to be there for friends and family when they need it is something I will always do. I've always been that person. But like I told David, I wish I had a clone of myself, so I could confide in myself.  Then I remembered that's what this blog is for.  So...

I'm good at putting on my smile and swallowing my anger and fears. But sometimes I just want to explode.  A want to throw a fit and cry. These are the days I run so hard I can't walk the next day.  Where I worry so much I forget to eat.  Where I keep my nose in a book just begging to escape it all.  When I color and draw page after page with the boys.  I know it could be worse but I want to pout anyways. 

The other week I went in to the dentist only to find out that I'm losing bone in my jaw and will have to have bone grafts to save some of my teeth.  The next day I found another lump in my breast that I am sure is just another fibroadenoma like the last one. I also got a letter saying my lady doctor was no longer in network so I would have to find a new one. Crap.

Then my hematologist calls to remind me I need to do my labs.   I let her know that I have been feeling sick so I will do them next week.  The next day the transplant clinic calls to remind me they need labs too. Then they call me back and remind me to schedule a Endoscopy.   I call the scheduler and she tells me I am also due for a ultrasound and doppler. Good grief.  At that point I was reminding myself to take deep breaths.

The next day I got a letter stating that my Dr is back in network so I call to set up an appointment to have my Mirena removed and replaced and was reminded that my other doctors suggested I just have my tubes tied. And there is one more decision I have just sitting on my shoulders. Then I realize...

That is 3 procedures I will have to go off my coumadin for.  And will have to bridge with the lovenox injections a week before each one.   There is no way I could have all 3 done at once so what the heck. I was just so excited to be done with those dreadful needles.  And suddenly I feel like crying all over again.

Poor David has been such a champ through all this.  My rock as always. This morning I said I just wish i had someone who understood what I was going through so I could talk to them.  I think I hurt his feelings. Even if he pretends not to have any! I hate unloading my problems onto him because I know the last thing he needs is another thing to worry about.  It's easy to feel alone in such a big world.  

In the end, I come full circle and am able to remind myself that even though it sucks, like really sucks, it could be worse.  Actually, eventually it will be worse.  I try not to ever ask "why me" because I would rather it be me than on of the boys or other family, but ever now and then I do.  Why.  Because I am strong enough to take it.  Even if I have to whine like a child every now and again.  

Tomorrow is a new day!

Read More

Happiness is ______ {2014-W7} #happinessis

If I was being 100% honest, I would say that at first I thought I was going to struggle with this post.  I have been beyond stressed, overwhelmed, bitter and flat out uh happy.  Its been a rough couple of days and I was thinking I would skip this week because I couldn't thing of happy stuff.  Then I scrolled though my photos and this is what I found. Happiness. 

Sometimes I get so annoyed when I have to have labs drawn.  Monthly, sometimes weekly.  I have to bother someone to take me there and then wait.  I'm so over it.  Like four years ago.  But Happiness is when the doc calls and says my numbers are perfect.

Happiness is knowing that even though there are days I would rock the heck out of a wheelchair, I am well enough to walk. Even if its only for short distances.  My energy has been hard to find these days, but so far its been pretty manageable.  

Happiness is fresh air and the smell of soccer :)  And also seeing this little guy boot the ball like a champ!

Happiness is a beautiful start to a day that was less than.  I don't know how many times I tell myself "at least the day started out beautiful!" 

Happiness is hospital cafeteria food. So often I worry that I scar the boys with so many trips to the hospital.  But they love it there.  It makes me sad that its such a normal thing for them.  But I am glad they are understanding and that they don't mind going.  Especially if Grandmas taking them to get some food.  

Happiness is trying a new place.  Even if it was awful.  I will just stick to my sausage and bean tacos.  But we actually tried something different for a change!

Happiness is having boys that love food I ate growing up.  So many kids turn up their noses to things like Musubi (rice and spam wrapped in seaweed), smoked oysters and octopus.  Its not very often we make them, but when we do, there are smiles all around!

Happiness is the love these two have for each other.  Chico is 13 years old. Hes feisty, yappy, grumpy yet full of love.  He hasn't been feeling so great lately and Poncho knows just what he needs.  Some good old cuddling!

Sometimes I just have to remind myself that there is so much more to be happy about than for me to fuss about. Yes sometimes I want to thrown my hands up and quit. I scream and cry and feel sorry for myself.  But even on the worst days, there is something to smile about.  Something that makes me happy, even if just for a minute.  Stop by Crazy Adventures in Parenting and share in the happiness!  

Read More

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!

Read More

Friday Five: 5 questions I get asked about my liver disease.

When people find out that I have a liver disease and I am on the liver transplant list the questions start rolling in.  Here are a few of the more common ones that people ask.

How did you get it?  

My Budd Chiari Syndrome was most likely caused by a hereditary blood disorder that I did not know I had. It causes my blood to clot easily.  It just so happened that the clots formed in my liver. There is a chance that I have had Budd Chiari since before I was pregnant with Anthony.  My father was tested and he too had the blood disorder (Prothrombin Gene Mutation G20210A). My siblings have a 50% chance of having it.  As do my boys.

Can't your liver just heal itself?

Yes the liver is the one organ that can regenerate itself.  When someone donates a part of their liver to another person, it will regenerate given time to heal itself.  For me, there is no break from the damage being done.  Scar tissue is building up and my liver is not able to reverse that damage.  

Are you scared? 

Hell yeah!  Plain and simple.  Being told that I could go from feeling great to a coma in a matter of hours has put a fog of fear over me. Honestly, not a day goes by that I don't think about it.  Every sharp pain or cold has me worried.  But I do my best to push aside the fear and I choose to live each day the best I can.  In the beginning, I was more afraid.  Add a high risk pregnancy and 5 doctors, yeah, I was a hot mess.  When he was born healthy, I was less afraid.  Now, I am able to deal with the fear so much better.  I know more and am more in tune with my body.  I'm not as afraid now, but its always gonna be there.

What is the cure?  

The only "cure" for Budd Chiari Syndrome is a liver transplant.  For me a living donor is not an option.  So I will have to wait for a cadaver donor.

How long until you can have a transplant?  

I have been on the Transplant list for over three years now.  And I have been pretty stable so unless something happens my guess is that its going to be a while.  My doctors have told me that as my liver weakens my other organs will be stressed.  And that eventually one of them will start to fail as well.  There is no way to tell if it will be my heart or kidneys, but that is their guess.  My MELD score has been in the 16- 19 range for the last year. With the highest score being a 40 and  the huge shortage of registered organ donors, who knows how long it will be.

Read More