Tuesday, November 26, 2013

BIG 21-- thanksgiving then & now


So much to be thankful for this year, it's not even possible to really put it into words.  I've felt it for a week, and its torn at my heart every day in every way.  Everytime I think about where I was last year, where my husband was, where my family was....it brings tears to my eyes.

Thanksgiving last year was horrible.  I was in septic shock, had already had four surgeries in less than a week, and was getting worse, not better.   On thanksgiving day, I went in for my fifth surgery on my leg and abdomen.  Jon and my parents, brother, sisters, and cousin Bryan didn't leave my side during the entire week of thanksgiving.  Although I was on the vent by the time thanksgiving rolled around, I was still so incredibly unstable, that all my family could be thankful for was that I lived another day.  My lungs and heart were working on overtime-- I was literally panting for air and my heart beat was racing- it was as if I was running a marathon 24/7.  And thank God I'm a marathon runner, or I wouldn't have survived one day of that.  At one point, they tried to reduce the sedation, and I just about coded before they re-vented me.  I had a constant fever- usually around 101.5-102 during the day, but at night, it would always creep up....103, 104, 105.  Just thinking about it makes me shutter.  My family was told that I was so unstable that it was quite possibly that I'd be alive one day and dead the next.  There was very little hope.  Almost nothing to hold onto.  Except each other.

There was talk that it was time to do a tracheostomy.  Somehow they were able to avoid that, THANK GOD.  I have enough scars, thank you.

Needless to say, a year later, we have so much to be thankful for.

I'm alive.  I'm improving and recovering.  I'm God's chosen miracle.

Coincidentally, I've had some huge breakthroughs in PT this week.  It's like my minuscule quad muscle is finally deciding that it wants to work again.  I leave PT and the gym in tears most days.  But tears or not, I don't give a damn.  I will not stop.  I'm thankful for my natural competitive nature and inherited strength. With an illness like necrotizing fasciitis or cancer for example, you have to fight for each day, each step. The fight never stops and most times it gets harder, not easier. We have no choice but to become stronger fighters if we want to live and get better... And this makes us so, so strong.

Sometimes you have to be pounded down to really grow.  And it sucks, to be honest.  It's not fun.  No one looks back and says, I had necrotizing fasciitis, almost died, had 7++ surgeries, lost my hair, lost most of my leg which is necessary for me to run, which happens to be the love of my life, and am covered in scars..... dang I'm so glad I went through that.

No. We get mad.  We get sad.  We grieve.  We accept.  We learn.  We grow.  We become strong.  And in the end, although we hate what happened, we learn that we are forever changed, in a good way.  We are so very strong.  We work hard for every damn step we take, every accomplishment in physical therapy, every new obstacle.  We cry in pain, but we keep freaking working hard because WE HAVE TO.  Because WE'RE STRONG NOW.  A new kind of strong.  And we're newly brave, too.  Did you ever stop to think just how freaking strong and brave and fearless that cancer patients are?  Yes.  We fought and we keep fighting, and it gets harder, not easier, but we're damn blessed because we're new stronger braver souls.

We see the world differently, since we lived through these battles.  Each day is a blessing, in our eyes.  We love our family in a bigger, more beautiful way.  Because we see the pain in their eyes as they tell us how sick we were.  How bad things were.  How they don't want to talk about it, because its too painful to think about.  But they never stopped hoping, praying, and they never left our side.

All these things, all these changes, makes me thankful this year.  I'm thankful that I get to spend this week with my family, celebrating life, instead of fearing my death.  We're gently walking through this week together.  We have to be gentle with each other, because the pain of what happened is still so present and fierce.

And I'm thankful that God allowed me to live and marry the man who sat by my side for 2 months in the hospital.  The man who never stopped loving me, never gave up on me.  Who cheers me on when I have a good day in PT.  Who holds me when I cry in pain or frustration.  And who told me yesterday that every time he sees my scars, it makes him love me even more.  Because it reminds him that I am a brave, strong, badass, fighter.  It reminds him of how far I've come.  Of how blessed we are that God saved me and gave us to each other.

Thank you God, for this Thanksgiving.

Sunday, November 17, 2013

My First Birthday. BIG part 20.

Happy Birthday to Me!

It is sort of a birthday, in a way.  A year since I was admitted to the hospital, septic, in shock, with necrotizing fasciitis already running ramped in my body and killing everything it touched.  A year ago would begin a 2 month hospital stint, 7 surgeries, countless IVs, PICC lines, arterial lines, a ventilator.

I don't remember much from the week before I was admitted to the hospital, as I described in the last post.  I can't tell you exactly what finally made me go in... my work friends had been calling and texting throughout the week to check on me, and when they talked to me Friday night, they said I didn't sound right.  I was adamant about not going into the ER....I wanted to wait until my parents were in from Virginia on Sunday.  Vanessa called again on Saturday and said she knew something was seriously wrong, and she was gonna go pick me up at home if she had to.  She talked to me first, and I said I was waiting until the morning to go in....and then she told me to put Jon on the phone....and told him "Get her ass into the ER NOW."  He listened.  And I finally listened.

Jon said in the days leading up to that night, I told him that I was fine, and this was normal, and I was on oral antibiotics, and I would be fine.  Since I'm a nurse, he believed me.  He said I refused to give in, and no one, including the doctor I saw in the office mid-week, knew how bad things were.  My systems were shutting down....liver, kidneys, heart, brain.  I was delirious.  I don't remember a thing.  Scary.

When I finally came into the ER, some of my nurse friends who were working that night came over to the ER to see me.  Vanessa told me... "Amy, you looked dead.  It was horrible."  The doctors and nurses told Jon that they didn't know if I'd make it through the night.  It didn't look good.

Antibiotics were started, pain medicines given, and a surgeon was called in.  Unfortunately the on-call surgeon that night was an ortho and didn't have a clue what we were dealing with.  The woman who performed my first three surgeries had never worked with necrotizing fasciitis.  After the first surgery they did to cut out a large chunk of my quad that was infected, I started hyperventilating... I was in pain and my lungs weren't working anymore.  Watching my breathing get faster and faster and the doctors basically telling my family that they couldn't do anything more was the worst 24 hours for my family.  When they told me how those first two days went, I get chills every time.  What a freaking nightmare.  Thank God Jon is a pillar of strength and thank God my family was there with him.  My husband, my dad, and my brother formed a team and had meetings with the doctors constantly.  They didn't take no for an answer.  They made sure everything that could be done was being done.  They asked the right questions, and didn't stop until they had answers.  They (along with God) may be the very reason I lived through it.

If you want to read the rest of my story, you can start here and keep reading through the posts.

A year later, it seems I've come SO FAR, but still have SO FAR to go.  I'm still not back to 100%.  I'm still scarred everywhere.  I still wear a wig or a ball cap everyday.  I still go to physical therapy 3 times a week.  I still have pain.

But I AM HERE.  I have to keep telling myself that, every time I scowl at those scars in the mirror, or every time my leg hurts so much after a run that I cry the whole way home.  And I have come so far.  I can walk without a limp....most of the time.  I'm not falling all the time anymore.  I can run- although it's a limp/run....and my speed is just about down to what it was post-illness.  My heart is bigger than my head, and I will never give up on this.  I'll won't stop until I run my 18th marathon.  And 19th.  And  20th.  I'm still working on my endurance.... without a muscle in my quad, it's difficult to be on my feet for extended periods of time, and I'm killing myself at the gym everyday to build up that endurance so I'll be able to return to work.

Thank you for supporting me this last year.  Thank you for your prayers that started a year ago, and continue today.  Those prayers have been my lifeline.  Thank you for letting me vent about my BIG in this blog, my anger, my grief and sadness, my happy moments, my accomplishments.  It's been a BIG part of my recovery, to be able to tell you what happened as I re-live it myself.  As my prayer warriors, you deserved to know what happened and how God worked.

Today is a day of celebration.  I'm going out with two of my closest girlfriends to celebrate our birthdays....her 30th and my 1st.  Because it's been a year since life as I knew it died, and the life I have now was born.  And it's a BIG life.  

Tuesday, November 12, 2013

A Year Ago Today.

A year ago today, my life changed forever.

A year ago today was the day I woke up feeling pain in my right leg.  Thinking back to it now, it's crazy to me that what I thought was a muscle pull or soreness from running that morning was actually the start of necrotizing fasciitis.

Sunday will be the 1 year anniversary of my first surgery and two month hospitalization, and I have an emotional and reflective post I've been working on for that.  But a year ago today marks the day that I realized I was sick, and something was terribly and irreversibly wrong.

That morning, I felt sore, but didn't think much of it.  When I went to work that night, it had started to get worse, but I still thought I had just pulled something.  I was limping when I started my shift.  After day shift left, Laura Grabowski, Nancy Evett, and I were sitting at the nurses' station talking about how our weekends had gone and what our plans were for Thanksgiving, which was just a few weeks away. My leg had started swelling a little, so I pulled up my scrub pants leg and showed the girls.... "Look at my leg," I told them.  "I think I pulled something running.  It's really bothering me and now its starting to get swollen."  At that point, we weren't very busy, so Laura (who was in charge) asked me if I wanted to go home.  I refused, telling her that I thought it would be okay and as long as it stayed pretty slow and I didn't have to be running all over the place, I should be okay.  I did feel a little strange, so I checked my temp.  It was normal.

As the night went on, it became increasingly painful and increasingly swollen.  I kept pulling up my pants leg to look at it.  What the heck is going on? I wondered.  "You need to go get it checked out tomorrow, Ames," said Nancy.  I knew I did too, but there was the whole insurance thing.  I just had to make it a month and a half and I'd have my insurance started back up again.

By around 3 or 4, I was sick..... really sick.  And coincidentally, the board had filled up and there were patients coming in left and right.  Around 5, Nancy's patient had a crash c-section and Laura had to run back with her to help her get going.  I was manning the rest of the floor, and ducking into the bathroom to throw up every 10 minutes.  The pain was awful.  I felt like I had the flu.  At 5:30, I rechecked my temp and it was now 101.  In between Laura and I running in between all of the rooms and trying to get through the last hour and a half of work in one piece, I told her that I was really sick now and needed to get out of there asap.  "I'll call someone in," she said.  I looked at the clock--- 6 a.m.  "No, just forget it, I think I can make it through this last hour, but as soon as someone gets here, I have to get out of here," I told her.  "Like I can't wait for them to grab coffee and wait until 7... I need to get the heck out of here."  Thank God for Laura-- as soon as the day shift started arriving- around 6:45 a.m... she grabbed the first nurse and told her to take my patients because I needed to leave NOW.  I was REALLY sick.

I don't remember giving report or what I said, I just remember feeling the urgency to get the hell out of there and get home to my bathtub and bed.  When I got home, my fever was up to 103.  I took tylenol, took a hot bath, and then went to bed-- and didn't get up until 18 hours later.  You can read how the rest of my week went here, what happened next, and how BIG my Big got.  In 5 days, it will be my 1 year anniversary of the day I was hospitalized and had my first of 7 surgeries.

On that anniversary, I'll go into how much things have changed in the last year, what I've learned, and how I've grown.

Exactly one year ago today, necrotizing fasciitis decided to invade my body and change me forever.  It has been the hardest, scariest, and worst year of my life.  Little did I know what was ahead of me, and it's a blessing that I didn't know.  More importantly, it's a blessing that I'm alive today.  Thank you, God, for saving my life one year ago today.  Thank you, friends and family, for your prayers and endless support and love.  Thank you.  Thank you.  Thank YOU.

I'll meet you here on Sunday, friends.  It will be an emotional day for me, re-living this last year and realizing how far I've come.  Bring some kleenex, prayers, and lots of hugs.

Sunday, November 3, 2013

BIG. #19

Surgery #7.

I still couldn't believe I was going back to the hospital, back to the IV, back to the labs and the anesthesia, and the stitches, and pain and recovery.

The tears in my knee needed to be fixed, regardless of whether they were 100% from the car accident, from the falls, from the past surgeries, or from the massive toll my knee had taken over the last decade as a marathoner.  There was a large amount of arthritis in the knee, torn and fraying meniscus and cartilage, loose bodies of tissue, and stiff scar tissue.  Also, I still was unable to bend my knee to a normal range, which would be 130-140 degrees.  The farthest I could bend was around 108, and that was with painful force from the PT.

The morning of surgery was pretty darn emotional for Jon and me.  It didn't feel good going back to that hospital, signing consents, meeting with anesthesia, talking about risks of surgery.  I just couldn't get it out of my head that something could go wrong.

I had gotten through septic shock, multi-system organ failure, breathing by a respirator for a month, six surgeries, months and months of painful recovery, losing my hair, losing my body to horrible scarring.....
But what if it was all for nothing?  What if I had some sort of freak reaction to the anesthesia and I coded on the table?

It helped to pray with my parents that morning.  Eventually I started to realize that God's plan was etched out long before that day.  It was etched out long before I had necrotizing fasciitis.  All I could do at that point was pray for comfort and trust that He has the best laid plans.

Surgery went well.  I did have an issue with pain in the recovery room-  the first anesthesiologist hadn't wanted to do a nerve block on my leg, and instead just put me under general.  She was afraid to put the epidural needle through the scar that covers my right hip.  So basically, my pain was about a million times worse post-op than a normal knee surgery patient whose leg is blocked for the first 24 hours, blocking the pain completely.  I felt everything.  It was an absolute nightmare.  It took me back to the skin graft surgery (The Closer), and I laid there still, tears running down my face and wishing my mom was there to put her hands over me and pray again, like she'd done during the Closer surgery.

Finally, another anesthesiologist came on shift and it happened to be one of the ones I work closely with in L&D.  He's an awesome doctor, and was so happy to see me, after being worried about me for almost a year since I'd gotten sick.  "We're doing the damn nerve block," he said.  "And give her whatever else she needs for pain.  This is one of our own here."  He did the nerve block right there in recovery, right through the scar, and it worked perfectly.  It was like having an epidural or spinal block in your leg....my leg was numb and I couldn't feel anything, namely, pain.  It was the first time in 10 months that I didn't feel pain.... 10 whole months of being in pain ALL THE TIME--- and it was finally relieved.  Thank you, God, I prayed.

Shortly after we got me more comfortable and my vitals stabilized, I got to go home.  That night, I felt great-- because of the block, I couldn't feel pain at all.  I was exhausted from all the drugs and anesthesia, and fell asleep immediately at home.

However, as nerve blocks do, the block started to wear off after about 18 hours--- and the pain was back....with a vengeance.

So there I was....in bed, leg sutured and wrapped, elevated.  Pain medication and gatorade at my bedside.  Wheelchair back in full use.  it felt too familiar and like we had taken 10 steps back.  I was depressed and hurting.  I laid there feeling bad for myself for a few days until I'd had enough.  I didn't make it this far to stop now.  I work harder than anyone I know.... it was time to continue my comeback.

And that's where I'm at today.


It's been 4 weeks since the last surgery.  I'm killing myself in physical therapy and killing myself at the gym.  My leg is doing better than ever.  My ortho and PT are monitoring my workouts and every move I make is planned out strategically by them, to recover this knee, to maximize what little muscle is left in my leg, and to strengthen my body, back to normal....or as normal as we're gonna get it.  I'm limp/running faster and longer each day.  I'm still feeling a lot of pain and have a lot of swelling in my knee, but I'm pushing.  And it's hard.  It's really freaking hard.  The pain I feel when I run and when I'm in therapy is strangely freeing.  Every run that I get through, as my runs get longer and my speed becomes quicker and quicker, is healing to my heart.  It makes my soul strong.  I can do BIG things.  BIG freaking things.

Next up, besides my continued healing and recovery-- reconstructive surgeries.  Time to fix what's broken... my scarring and my heart.  Looking at these scars everyday breaks my heart a little, to be totally honest.  Pray that we'll know when the time is right.... pray that we'll figure out the best way to finance it.  Pray that my doctors are able to fix enough scarring so that I feel beautiful again, and free from the hurt.