Frustrating Day

There is seriously been nothing more frustrating, than having to deal with nurses that don't understand pain; or the pain that I am in.  I am in an excruciating amount of pain, and I mean like more than I ever have been in before, and they don't listen to me.  All day I have been dealing with a nurse that has been late by up to three hours in giving me medications.  And I mean I am not even 24 hours post op.  And the thing about all of this, was before the surgery when I thought it couldn't get any worse, the doctor told me that the pain would be far worse than where I was yesterday.  So here I am today, and yes it is so much worse than where it has been the past couple days.  Plus with my surgery only two weeks ago, I haven't even begun to recover from that.  I want to so badly be better.  I want to be comfortable at bed at night.  I want to sleep again without pain.  And so right now, yeah, I am frustrated that I don't have nurses that don't understand.  And none of them have had surgery, let alone 10!!!  Sorry if this post is so negative, but I cannot hold it in anymore.  I am so done with all of this.  They have decreased all my medications tonight, and what I don't understand is when you have had the kind of day that I have had, why would you decrease at night, when in order for me to recover the least they could do would be to wait until tomorrow.  So tonight I will go to bed in pain.  I will go to bed frustrated and not sure how I keep putting one foot in front of one another.  I will be frustrated by my nurses that I had all day, and the nurses that are not interested in helping me tonight.  Not even a 24 hours out yet.  Nice.  Hard to make it proud of things that I did accomplish.  Things that made me ball into my pillowcase wishing the day away.

Just pure frustration!

Worried

Okay, yes I know, it is not good to worry.  But I cannot help but be worried.  My right leg pain is so bad that it has now radiated into my foot.  This morning I was trying to stand while taking my medications, and I literally fell backwards (and luckily there was a chair I could grab), because I could not support my weight and stand on it.  It is getting worse everyday, and it should be getting better.  At 1 am on Sunday morning I went to the ER to rule out blood clots, and they said to contact my surgeon right away.  I called the on call doctor yesterday, because the offices were closed.  He and I went round and round.  It was ridiculous.  He kept saying that if I could not support my weight and stand, than I would need emergent surgery.  Well, I would tell him that I cannot stand and hold my weight.  My leg just shakes and shakes.  He said this was okay, it could wait until I talked to Dr. Gerdes.  Really?  Didn't he just say that it would call for emergent surgery?  Oh, I could scream.  I am in so much pain, that I cannot even describe, although the leg pain is so bothersome and painful, that for the most part I am not noticing the pain in my back.  And there is pain in my back.  I am frustrated and tired.  And even more so I am getting pissed off.  I want some answers, and before it is too late.  In the last couple years I have heard so many stories of patients going home, with no problems, and then bam, they have something go wrong and lose their leg.  Or other problems.

So excuse me if I am worried, I am normally a little more laid back, and really try and put all my trust in the Lord to answer my questions.  I am praying, but I can tell that my heart is not totally into it.  It is hard, I am worried.

Have you ever?

Have you ever had so many words to say, but at the same time, nothing at all?  Have you ever cried so much, that you have run out of tears, so you cry silently inside your soul?  Have you ever had something totally consume you, and you try to escape it, but you can't?  

Then I pray, and I release all of it to God.  He is the Only One who can help me right now.  He is the only one who can hear all that I have to say without saying it.  He is the only one who dries my tears on the inside.  He is the only one who can take it all away.  Thank you Lord for knowing me.  Thank you Lord for loving me so much that you know what I need and you take care of me.  

Am I the only one, or have you ever been the same way?

Tears

I can't help but cry this morning, as I lay here, alone and in pain.  The pain has been excruciating and I cannot seem to get in front of it.  My doctors this weekend didn't care.  Literally, he said he didn't care, he wasn't going to change anything to help me out.  My nurses have been better this time, but the pain is worse and I have been far more emotional.  The construction behind my room drowns out the sound of my crying, and it makes me want out of here even more.  I miss my family.  I miss Paul.  I actually just miss receiving a hug from someone.  A personal touch of love and compassion.  I am nervous to go home, and am not sure when this will happen.  There are days, that I just wish that I could turn back time and go to the moments that were way happier for me.  But then I realize that by doing that I wouldn't have Dylan and Lily in my life.  I am mostly crying this morning because I miss them, and wonder if they are missing me too.  I cry because the pain is taking over.  I someday hope to look back at this moment and not even remember what this felt like.

Pain

I cannot just go on pretending that my pain is not terrible.  Truth be told, because of the other night, my pain is so much worse.  My fever was so high, and I was having hallucinations.  I was talking to the nurses about dogs, grandchildren, and then talking with one of them as is she was my Aunt Kim.  I could see worry in their faces.  When I woke up in the morning I was totally fatigued, and I couldn't remember most of the evening.  The nurses filled me in.  I know that adult fevers are quite severe and need to be monitored.  I am so physically exhausted.  Walking to the bathroom, probably seems easy to most people but it is so difficult.  And my legs are really weak.  I haven't said it out loud, but they almost feel limp.  I really want to come home, but know that when I get home things will change.  I will change.  I am stubborn when it comes to my recovery, so I will try and push myself to get more accomplished.  I am just so tired of dealing with this pain.  How am I supposed to feel?  I cannot express to the nurses enough how completely tired I am, yet none of them get it.  I believe they will push me out of here tomorrow.  So many things that I need to get done first: shower, walk the bedroom, walk the hallway, practice in and out of bath chair, and then doing flights of stairs.  That means they are cramming so much into such a little period of time.  Oh Lord, I cry out to you for help.  I cry to You for strength, because in my weakness you are my strength.  Please Lord, take my pain.

End of Life Decision Making

Today has been a busy day of getting things done in preparation for surgery on Wednesday.  The thing is I wasn't thinking about my surgery, but more so, just doing things and playing with the kids.  That is until I got the mail.  Oh man, my health care directive form.  For the past 8 procedures, they have asked me for my health care directive, and I have always told them I don't have one.  They have told me that I should look over the application and think about it.  Well the truth is, I have thought about it.  Before every procedure, Paul and I hold each other while we cry, and discuss all the scenarios.  All of my wishes.  And the hard part but the arrangements if I were to die.  These are hard things for a person to think about.  I am not in fear of dying, for I know that Heaven is a far better place than here.  I am, however, worried about the kids and Paul.  I hate the idea of them not having me.  It makes me sad.  Paul and I have discussed what I want at the hospital, but now the time comes for me to decide whether or not I fill out the app and make it real.  Paul has expressed it would be difficult for him to follow through if the time would come, but I know he would do it.  So my thought is that I would love to relieve him from the burden of the decisions, but it is hard to fill it out.  By filling it out, it almost feels like that will be what happens.  So do I, or don't I?  That is my question?

Let the Countdown Begin...

And so it begins.  My countdown until next Wednesday.  One week away.  Okay brain, turn off.  Stop working in overdrive.  So much to get done, and not enough hours.  I am worn out from my emotional roller coaster and my physical pain.

And so my countdown begins...

Last night...

So last night is one of those nights that my pain totally consumes me.  It had been a long day, and no matter what I do to focus on other things or do, I can feel the pain deep down.  I usually get pretty quiet, I don't try to talk about it.  Truth be told, I know that some think they are "tired" from all of this, and they probably are, but lucky for them they don't have to live in this body.  So I get home, and my body is just a mess.  I keep a smile on for the kids, get them in bed, and collapse on the couch.  My legs are tingling, my left foot was totally numb, I had burning coming from both sides of my SI joint, my pacemaker was racing which causes a feeling I can only describe as touching an electric fence, but the back pain was the worst.  I am not sure how to describe it, but it felt like there was a tool digging into my skin, twisting itself around and making it almost impossible to walk.  I could hardly move and the pain started to radiate up my back and into my neck.  I was done.  Time for bed, because I wasn't sure how much longer I could go on sitting in the living room.  I went to lay down.  The pain increased and I could not move my body.  My back was so bad that I could not lift it up to shift positions, not that it would have helped.  It is so hard for me to escape the pain sometimes.  To pretend as if it doesn't exist and do the daily stuff that needs to get done.  As I was laying there, I realized that my pillow was soaked.  I hadn't even noticed that I was crying.  Sobbing actually.  It was just so painful to lay there, but I knew I had to wait it out.  I laid there last night pleading to God to take the pain away, or just let me fall asleep so I didn't have to feel anymore (well at least until I have to rotate during the night).  I cried myself to sleep as the pain became too much, and just kept praying.  Last night was one of those times that the pain consumes me.  (This isn't the first time it has happened)

From the beginning (oh boy!)...

Forgive me if this entry gets to be long, but I want to give the background of all that has happened to me.  I have had many problems within this body for a very long time.  When I was an elementary school, my foot had a bone that was not growing with the rest of my body and I needed a cast for several months.  During high school, I fainted very often (very scary), and it was discovered that I have hypoglycemia.  I also had severe stomach cramps and issues and would get very sick, as well as finding out I had asthma.  After graduating, there were many other problems.  I had kidney stones, ulcers, and while at college had a "minor" heart attack and was diagnosed with pleurisy.  All of these things that had happened I was told, because I had a high level of stress and worry.  I believe it.  There were many things going on in my life, but ultimately I believe that I have been living in a broken body for a long time and it was all preparing me for a more difficult time that was about to come.  Now I don't want you to think there were not good things, I had plenty of happy times, and the happiest came when I met Paul.  He made me happier than I had ever been.  I knew that he was the man I wanted to marry.  I continued to struggle with most of these issues, but just continued to go about life with Paul and eventually started planning our wedding.  We got married on June 18, 2005 and it was beautiful.  God is good.  It was just two months later that I got pregnant.  We weren't planning on having kids right away, but we both weren't upset that it happened.  It was the strangest thing, because literally within two weeks of getting pregnant I knew that I was.  I was so sick and my body would not let me eat or keep anything down.  So I took the test, positive.  GREAT news.  It was great, except that I was so sick.  I was told to give it time it was just the typical "nausea".  Try this and try that, but people were not understanding that I couldn't even get ice chips down.  It was within a month and a half, and I was weak, I was brought into the hospital and needed IVs right away.  I was severely dehydrated.  It was bad.  I was totally miserable.  I would go in every day for IVs since I could not keep fluid in me.  The diagnosis, Hyperemesis.  Less than 2% of women get it.  It is basically a severe vomiting that prevents adequate intake of fluids and food.  This is not a first trimester thing, it is an entire pregnancy thing.  After 2 1/2 months, they put in a PICC line, which is a way to get fluids, without getting a new IV every 3 days.  I was poked alot!  The PICC line was inserted in my vein in my arm and continues to right above the heart.  Well that was my first pregnancy, fluids everyday in the hospital for nine months.  The delivery was complicated, but in the end I had a perfectly wonderful baby boy, Dylan!  Things were actually good for the next couple years, and we decided to have another baby.  I was definitely nervous about the whole thing, but felt like I was eating right and was "healthy".  I had Hyperemesis again, but this time it only lasted for about 7 months.  On October 24, 2008, I was vomiting so violently, that I broke my tailbone.  This was so hard.  In January, I was still struggling with my pregnancy, broken tailbone and then I severed my tendon in my finger and I felt total despair.  Just a couple weeks later, I had a baby girl, Lillian.  I thank the Lord that these struggles actually happened, because had they not, I would not have discovered the birth defect that was a hole in my spine.  My spine had been slipping so much, and had it not been discovered, they are almost certain I would have ended up paralyzed.  My first back surgery was November 5, 2009.  A L5 S1 fusion with a disc replacement.  This was a very difficult time for me, Paul and the kids.  Dylan was 2 1/2 and Lillian was only 9 months.  I started to realize in March that at every visit my heart rate was around 145-160 bpm.  I started asking questions, and soon was referred to a cardiologist from the Minneapolis Heart Institute.  My heart was beautiful.  Everything looked great, although the beats were getting faster, and I was going like 5 days at a time with no sleep.  I was wired but tired.  So this was when I was referred to an electrophysiologist down at Abbott in the Cities.  Through testing the doctor was certain that I had extra nodes that took over my natural pacemaker in my heart.  On August 7, 2010 I had my first heart ablation.  They had burnt off several nodes, and it was good, for a little bit.  By December I needed to go in again because my heartbeat was just too fast.  After several more ablations, on February 21, 2011, I received my pacemaker.  I am 27 years old and now live with a pacemaker.  Through all of this, my back surgeon and I were still monitoring my fusion, which had still not taken place.  In fact, one of my screws was moving and compressing on nerves, causing severe pain.  Pain that was in fact worse than childbirth in my opinion.  So skip a few months, and as it was getting worse, my son accidentally kicked my pacemaker and it shifted.  Yikes!  It burned.  I can honestly say that I cannot describe the feeling of the burning from my pacemaker.  It comes and goes, but mostly just stays.  I have talked to the doctor and he said that he has had several patients try to describe it, but that others have said the same thing.  And although he doesn't know what it feels like, he understands.  It is different, he says, for me because I am so much younger, and many people when they are older don't notice it, because they are just old.  So on June 7th, I had a pacemaker revision, in which they used extra suchers to hold the pacemaker tight and in place.  They also shifted it more to the left and it became "less" noticeable than in my chest.  Just one short week later (most of it spent in the hospital), I would be having my second back surgery; June 15th.  It was taking out the right side hardware and some other work to make the bone work hard.  Well, that leads us to now.  After viewing my latest CT just a few weeks ago, it was discovered that my spacer is coming out and my right side slipping.  I need to have another back surgery on December 14th.  They will replace the spacer with a newer design and put in new hardware on my right side.  This is so discouraging.  Almost as if I am starting all over.

The one thing that has gotten me through all of this has been my relationship with the Lord.  I have grown ever deeper in my faith as I have dug deep in the Bible for answers, prayers pleading for answers, and having my Lord understand my sorrow.  He doesn't want me to suffer, just like I don't like watching my kids suffer.  He understands when I am angry with Him, and He knows that I will always turn back to Him at the end of the day.  God is greater than anything else, and because of this I am allowed to have any feelings that I want to.  This is how I am able to live within this broken body.