Wednesday, December 11, 2013

Next chapter...

Surgery #8 is scheduled for Jan 29th.  Sounds far away but its actually only about 6 weeks and I'm already scared.  Scared and excited.

Finally gonna get these scars fixed.  As Dr. G says "Ames, we gotta put humpty dumpty back together again."

We were thrilled to learn that insurance was gonna cover the bulk of this surgery.  We'll have to pay a little out of pocket b/c insurance doesn't cover anything, but it's doable and won't require a house-sized loan to pay for it.  Also, even though my work requires that my medical care be done at Alexian Brothers in order for them to pay the max, we found out it won't be that much more to have it done at Loyola...which is amazing news, because that's where I lived for two months last year...that's where my doctors are...and the reconstructive surgeon there is amazing and familiar with nec fasc scarring and how to proceed with the complicated mess of a body I have.  Plus, Dr. G and Dr. Mosier will be able to come and see me, and it's even likely they'll scrub in and help, since they know exactly what's going on in there.

All in all, it's scary, but necessary, and I'm excited to get it over with.  I wasn't sure if it would be years before we'd be able to afford to pay for this complex surgery.... I'm so glad that we're doing it now so we can move on from this disaster.  The recovery is gonna be absolute hell and I'm sure I'll have a few BIG chapters to cover it all.

In the meantime, I'm still in PT...working really hard, getting stronger.  I run way more than I should, but come on.  They tell me I can run 2 miles, I'm gonna run 10.  I can't help it.  The pain is motivating.  I've been through that before.  Honestly, if you can get through an 8 hour skin graft surgery and recovery of 7 surgeries, you can run 10 miles.  My right leg doesn't help me much, but my left leg has trained itself to take the bulk of the work.

Leaving for the Nec Fasc celebration Cruise in 3 days... I cannot wait!!!

Friday, December 6, 2013

BIG #22- Caught Up.

It took me an entire year, but I finally did it....

I got caught up with my BIG.  It took a year to write it all down the way it needed to be written.  A year to learn what happened.... to remember it....to process it.... to capture it the way it needed to be captured.  And now that I've caught you up to where I am now, in the present, it's almost time for the story to continue.

After the holidays, I'll be having my next round of surgeries.  The doctors haven't decided whether or not it will be one or two or three.... I'm hoping for one, but the recovery for one might be too much for me to handle, pain-wise and systems-wise.  I'm meeting with the reconstructive surgeon one more time to talk about what exactly these surgeries are going to entail and decide how we want to proceed with it.  With my anemia and extremely low platelets, they want to minimize the number of times I'll have to go under anesthesia, but they also don't want to do more than my body can handle.  Pray that we make the right decision about this.  I'm scared for the pain.... I remember exactly how the skin grafts and closing of the wounds felt during surgery #6.  It was pure hell on earth, and I know this one is going to be similar.  However, I lived through that and  I know I'll get through this too.  And at least with this surgery, I'm excited for the outcome--- reconstructing and fixing the scarring so that it doesn't look like a shark attacked me and ate half my body.  I will always wear scars-- lots of scars.... but this will improve things big-time.

It's what I need to be able to finally say I'M BETTER.  It will help me be able to move on and live again... to not scowl every time I look in the mirror.

There are other health issues related to nec fasc that are in the back of our minds and that may or may not be a problem in the future.  We're hoping and praying that necrotizing fasciitis won't rear it's ugly head in those areas of my health.  For right now, we're living in the moment, day by day, and fixing the wounds in the next step.

My leg is getting better daily.  I'm walking better, limp-running faster, and my endurance is improving.  I still have bad days-- today, for example, my knee was stiff and sore for no reason and didn't want to bend at all.... I ran on it and it made it even worse.  That's frustrating as hell.

I also need your prayers because of another issue I'm having with my bad leg.... I don't want to go into details until I know more and get an MRI, but please pray that it is nothing.

The next chapter of BIG will involve this next surgery.  Glad to have you prayer warriors on my side to  help pray for success with the scars and control of the pain.

I'm hoping that chapter of BIG will be the last.  I hope that necrotizing fasciitis stops there and a new chapter of life as a healthy wife, working, marathon running, starting a family takes over this blog.  Thanks for tagging along and helping me get through this BIG.

Until the next chapter....

Happy Christmas!  My Uncle Rick and Uncle Nick are taking me on a cruise to celebrate my survival.  When I was on my deathbed last year, they told me that I was gonna survive, and when i did, they were gonna take me on a cruise to celebrate me living through an illness that should have killed me.  We're leaving in a week on the Celebrity Silouhette and sailing to Jamaica, Haiti, Grand Cayman, and Cozumel for 7 days and I CANNOT WAIT!!!  I am blown away by their love and generosity.  I have the best family in the entire world...seriously...the BEST!

Tuesday, November 26, 2013

BIG 21-- thanksgiving then & now

Thanksgiving.

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.

Comeback.

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.

Wednesday, October 23, 2013

BIG. #18

I may or may not have had a major panic attack when the medics extracted me from my wrecked car and strapped me into the ambulance.  I had been rear-ended while I was sitting at a red light by a car going full speed.  He hit me with such force that I hit my head and had a concussion, had whiplash, and worst, my bad leg was crushed between the dashboard and seat, causing excruciating pain in my right leg and knee.  The pain was just as bad as my skin graft surgeries in December.  Being in the ambulance alone was giving me a big old case of PTSD.  I shook and cried all the way to the hospital.

Freaked by all of my scars and history, the staff immediately x-rayed my entire body and CT scanned my head and neck.  No bones were broken, but after an MRI, they found several issues in my knee, including several meniscal tears that would require surgery.  The pain was intense, and the hospital kept me overnight to help manage it.  It was my first hospitalization since being sent home from Loyola in January, and I was scared and shaky the entire time.

Later in the afternoon, the PT came in to see if we could get me up walking on my crushed (operated on) leg.  I tried to stand up, and immediately collapsed.  Angrily, I tried again.  Mind over matter, Amy, Mind over matter.  Tried to stand up again.......nope.  Knee gave out immediately and I fell.  At that point, I completely lost it.  I started sobbing.  I felt like everything I've worked so hard for in the last 9 months was completely ruined.  I couldn't fathom being at the point of using the walker everywhere, using a wheelchair, and constant, grueling pain.  Jon grabbed me, put me in his lap and just held me and let me cry.  It was what I needed at that moment, and my wonderful hubby knows how to calm me down.  (After all, he was able to keep me sane after I lost my hair....let's not forget THAT horror).

The hospital kept me over night for pain control and to regain some of my ADLs, and I was discharged in the morning.  The next surgery-- surgery #7 was scheduled for the next week.

The moral of the story today?  Don't freakin text and drive.  You might hit a girl with nec fasc and total her car and smash her bad leg and cause her to have a 7th surgery on her tiny right leg.  Boom.

Thursday, October 3, 2013

BIG. #17

God never gives you more than you can handle.

That's something I have to keep telling myself every single day.

Last post, I was telling you how I lost my hair, and then how I handled it.  At that time, that was the highest and most painful hurtle I had to jump over.  Looking back, it still is.

But it isn't over.

Since that time, I've continued physical therapy (3x a week) plus I spent the other four days a week in the gym, doing my own exercises, walking on the treadmill, and doing everything I can to get back.  My heart hurts not being able to run.  I've gotten stronger, but I still feel pain daily, some days worse than others.  I still have a lot of weakness in the leg, as most of the muscle in my right quad has been removed along with all of the fascia.  I haven't regained full range of motion in my knee.  It only bends partially, which is a big reason I'm not able to walk normally or be on my feet for long periods of time.

Right after my wedding, a new problem arose in my recovery.  I started falling.

It started on our honeymoon.  We were in the Kauai Airport in Hawaii and I was walking across the street where the buses and taxis pass for arrivals and departures.  In front of probably 1000 people, all of a sudden, I completely licked it and fell HARD in the middle of the street.  My purse and carry-on went flying, I scraped up my arm and leg, and I was in PAIN.  Tears poured down my face in pain, humiliation, and fear.  I was afraid I had broken something.  Jon, who was dragging all of our other suitcases, came running over and picked me up off the ground.  I hobbled over to the sidewalk, dusted myself off, and fought back tears.  I was scraped up pretty bad, but nothing was broken.  It was a strange fall.  I couldn't tell if my leg had given out, or if I slipped, or just took a bad step.  It was painful, but not the worst thing in the world.

Over the next month or so, the falls became more frequent and more severe.  They happened so fast that I couldn't tell what exactly was happening and why I was falling.  Each fall was a setback...I'd be in severe pain for a day or two and then be unable to go to PT and have to increase my pain medication.  Then, I'd get better, do fine for a few days, have a fall, and the process would revert back to the beginning.  My doctors were starting to get really concerned.  I have such a tiny amount of muscle left in my right quad and virtually no fascia to support and protect it, so any of these falls could easily result in a broken femur, which would be almost impossible to ever heal without muscle.  We tried a brace, we tried decreasing my physical therapy, we tried just having me walk slower and more aware.  Nothing helped.  Slowly, the walker was introduced back into my life, which sucked, as I thought I had rid myself of it forever before the wedding.  But my doctors insisted that I needed some mechanical support to grab onto when I started going down.

About a month and a half ago, Dr. G was maneuvering my knee in the office and having me do some exercises and realized just how little progress my knee has made in terms of range of motion.  "Well Ames," he said, "I'm convinced now there is something going on with this knee.  I think this is why you're falling, why you're not walking right, why you're still in pain, and why we've plateaued."  He referred me to a Sports Orthopedic doctor to look at my knee, the muscle in my quad, and what the heck was going on in there.

A week later, I was at the appointment, and they xray'ed my hip, quad, and knee.  Besides there being almost no muscle in my right quad, there was nothing broken at the time.  There was quite a bit of scar tissue and arthritic changes in the knee and the little muscle left in the quad had adhered itself to the bones in the knee.  He ordered an MRI.

After the appointment, I headed over to physical therapy.  They started using an electroshock machine to stimulate the muscle in the leg which hurt like hell.  Other than that, it was a normal day in PT.  On my drive home, I was sitting at a red light when all of a sudden, a car going full speed slammed into the back of my car, smushing the back end of my car into the front like an accordion and crushing my bad leg into the dashboard.  I also hit my head and had whiplash.  Before I knew it, I was in the back of an ambulance on the way to the ER.  Another hospitalization.  I was terrified.

Saturday, August 24, 2013

BIG. Part 16.

After I had a wig on my head, it was time to fast track to the wedding.  There was only a few months until the Big Day, and I had a ton of stuff left to do, after being sick and hospitalized and then handicapped at home for 4 months.  Although I had a ton of doctors appointments and physical therapy all the time, the time away from work allowed me to get a lot of the little details done.  I don't know how I would've ever planned that wedding without that time off of work.  Before I got sick, between working full-time, extra shifts, and being on night shift, I was constantly either working, sleeping, or trying to sleep.  That was one blessing of being on medical leave.

 During those few months before the wedding, things were rough financially.  Jon was doing amazing at work, THANK GOD, and was able to help me a lot, as well as pay for a lot of things we needed for the wedding.  Jon got a HUGE promotion at work during the first few months of my recovery, which was, I believe, a gift from God.  He giveth and he taketh away.  Although I felt like so many things had been taken away, God was also giving me everything I needed to get through this tragedy.  Although I had several million dollars in medical bills and a wedding to plan, I tried not to worry about money and how we would pay for things.  I prayed that God would provide....and He did.  He provided me with a fiancé who was now making good money and had been frugal for his whole life....so he had money saved to pay for wedding things, the honeymoon, and a lot of my bills.  He paid for everything in cash, so that we wouldn't add any more financial stress to ourselves after we got married.  God also provided me with parents that were able to support me financially with basically anything I needed, including my bills, rent, and paying for most of the wedding.  He provided me with a dad, who as an attorney, was able to find us the one of the best worker's compensation lawyers in Chicago.  He provided me with a mom who through the help of her sister, my Aunt Sue, was able to get my disability  set-up, new insurance, and financial assistance from the hospital.  Things I would've never been able to do on my own.  God set it up so perfectly.  Because if He brings you to it.....HE WILL BRING YOU THROUGH IT.  He really will.  Like I've said before, you have to do your part.  You have to work hard, do what is right and what you need to do (for me, it was working hard in physical therapy, keeping on top of all paperwork and phone calls for doctors and disability, and planning the wedding).  But in hard times, in tragedies, if you do your part, and then pray for God to provide you with the means to get through it, He will GET YOU THROUGH IT.

I have found that the only way to get through a BIG, is to place your life in the hands of our BIG God.

I was working my butt off in physical therapy so that I could ditch the walker for the wedding.  If you read my post about walking down the aisle in my wedding, you'll remember that for two weeks before the wedding, I refused to use the walker.  I was falling all over the place and in a lot of pain, but my goal from the beginning was to be able to walk down the aisle on my wedding day.  You'll read about my wedding next....

Saturday, August 10, 2013

BIG. Part 15.

It took me two weeks to finally get off the bathroom floor and start living again.  I wouldn't talk to anyone, except Jon and my parents, and those phone calls were a mix of sobbing and praying together.  My parents cried out to Jesus to help their little girl who hurt so bad she'd lost herself.  My parents were extremely worried about me.  My mom would send me pictures of different wigs and nothing looked right.  I started getting angry and frustrated.  I didn't freakin deserve this!!  Why would God let ANOTHER bad thing happen to me?  What did I do to deserve this?? Knowing that my wedding was four months away was sending me into a tailspin.  I considered postponing it many times.

Each time I took a shower and lost more hair, I lost my mind.  It was a tragic time in my life that I'll never forget.  But if God leads you to it, He'll lead you through it.

There came a time when I couldn't leave the house, because I was too bald to go anywhere.  That was the day I decided it was time to accept this defeat and do something about it.

My dad is the most amazing person I know.  He takes my pain and makes it his....Just like Jesus does with all of us.  My dad wouldn't rest until we had a solution that would make me feel better.  He was willing to do whatever it took to help remedy this situation and heal my broken heart.  After extensive research, he found a place in Chicago that does hair restoration.  It was expensive, but it sounded like the best solution for what I had going on.  I would be able to get a wig made from real hair, and they'd be able to match it exactly to what my hair color normally was.  He told them, spare no expense, make her feel beautiful again.

The next day, I put my bravest face on and went to the appointment.  They immediately found that the best solution would be a wig that could clip into the little amount of hair I still had left.  They were wonderful with me.

When I finally got the wig, I could breathe again.  I literally felt a hundred times stronger.  I had a SOLUTION.  It wasn't my own hair.... and I still shuttered knowing that I'd be wearing a wig on my wedding day....but I felt like myself again.


me with my new 'do!


Looking back on it now, it still hurts.  My hair is growing back, but I still have to wear the wig, and probably will for awhile.  But now I can see the blessings that surrounded that dark time.  God gave me parents who love me so much that they would do anything to help me.  He blessed them so that they would be able to financially help me by paying for the wigs, which I would've never been able to afford on my own.  He gave me a dad who would do anything to help me, and who did.  Who loved me enough to spend his time researching hair restoration places until he found the perfect one.  I am so unbelievably blessed.

Sometimes we have to go through these trials in life so that we are able to open our eyes BIGGER.  To stop focusing on trivial things and to stop feeling sorry for ourselves.  God wants us to see our blessings.  And through this trial, I was able to see my blessings in a much BIGGER way.  Hair or not, I lived.  I have a family and husband who'd do anything for me and who'd love me anyway.  And that, is a BIG deal.

Wednesday, July 31, 2013

Prayer works.

J had a huge deal go through at work today.  HUGE.  The deal of the year for him that would essentially make or break the year for him.

The client he was working with were tough to work with and looking like they wanted to change companies...before J had started working with them since his promotion.  They were one foot out the door and he basically had to talk them into staying.

He was worried.  And when he's worried, I'm worried.  Because my husband doesn't ever worry too much about anything.  Very even-keeled.  The exact opposite of me, who worries about everything.

I told him we needed to pray about it.  He asked me why God would have the time for something like  a business deal when there are so many more important things He needs to be caring about, like starving children, and shootings, and necrotizing fasciitis.

It was a great question, and I'm sure one that a lot of us ask ourselves.  How could we possibly ask such a BIG God for things that seem so little in relation to the rest of the world.  I mean, how is me finding my keys when I lose them an important thing to pray about?  Will God be offended if I ask him to help me fall asleep sooner...and stay asleep tonight?  I left my iPod at the gym...should I pray to God that it's still there or just cross my fingers and hope for the best?

What I can tell you is this.  God WANTS us to talk to him.  He wants a constant dialogue between ourselves and Him all day long, every day.  It doesn't matter if it's something stupid, like asking that there not be traffic on the way to the airport.  Nothing is stupid in His eyes.  And sure, there will be times when we pray for the BIG things.  Like praying that a girl with necrotizing fasciitis who isn't supposed to live is miraculously saved.  And healed.  And God wants to hear those things too.

A lot of us only pray when we really want or need something.  But the Bible tells us to "Pray without ceasing." 1 Thessalonians 5:17.  To me, that means, pray about nothing.  Pray about everything.  Talk to God.  And then TRUST HIM.  That's the most important part of the praying.  We have to trust that what we are asking God for will be answered by Him in the right time and in the right way according to what He feels is best for us.  "If you believe, you will receive whatever you ask for in prayer." Matt. 21:22.  My favorite verse.  That verse was what got me to start talking to God on a regular basis about everything.  He wants us to ask him for things.  He wants us to trust him.  Because if we pray about it, and trust him, and he answers us....then how strong does our faith in Him grow??

I told J, we're gonna pray about this business deal because God cares about what's important to us.  We have to pray about it and then trust him to answer it.  And if he answers it the way you want, it's not just because He wanted to see you happy.  Look at the bigger picture.  He wants to teach you that if you ask Him for things in trust, and really trust, He is going to answer you.  And that is gonna grow your faith in Him.

And don't forget that you have to put in your part too.  Jon just couldn't pray about it and then sit there all day and do nothing.  He had to faithfully work his tail off, doing everything he could to make the deal go through.  And then he had God's help as well.  And the prayer was answered!!!

With nec fasc, I can't just sit at home on the couch everyday and not move and wallow in my pain and just pray that I'll someday be strong enough to run and work again and that my body will be whole.  I have to faithfully do my part.  God and I are a team.  I go to PT and the gym and work my butt off...and He gives me the strength, endurance, mental toughness, pain relief, and healing of my body.  And that, people, is how prayer works.

Monday, July 29, 2013

BIG. #14

The night my mom left to head back to Virginia after 3 months by my side was both scary and sad.  My mom and I have always been close.... but it was like starting back over with a newborn when I came out of the coma.  She was there to coax me out of my anesthesia-induced craziness.  She was there to pray over me day after day, at my bedside in the hospital, and at my bedside once I was home.  She was there to wash my hair in the hospital bed, paint my fingernails and toenails.  Help me scrub off all the layers of skin that I lost in the hospital. (I lost several layers of skin on my hands, feet, and legs due to that part of my body being "shut off" when I was septic).  She was the one who cried with me on the floor of the hospital hallway, when I first attempted PT and realized just how handicapped I really was. She was the one to help me shower when I was finally able to shower and help brush my teeth, and blow-dry my hair, and braid my hair.  She was the one who held me like a baby when I was sobbing and shaking in that concentration camp-like bath.  She was the one who spoon-fed me when I refused to eat for weeks and weeks in the hospital because nothing tasted good.  And she was the one who brought in food from every fast food restaurant in the Chicago-land area, to see if what she brought that day would end up being the ONE THING I'd finally eat.  She was the one (along with my dad) that made sure all my bills were paid while I was in the hospital and after I got home.  She was the one who made sure I had short-term disability set up.  She was the one who spent hours upon hours upon hours on the phone trying to get Medicaid to cover my un-insured medical bills.  She was the one who took me to my doctors appointments, cheered me on in physical therapy, took me on outings to the grocery store in a wheelchair, just to get me feeling somewhat normal again.

We got so close in those 3 months, that as the day for her to finally leave approached, I started to get bad anxiety and panic attacks.  I was afraid of what life was going to start looking like once she was gone.  I had Jon, who was doing a great job supporting me too, but he was at work all day, and still living at his parents in Joliet, because we weren't yet married.  I didn't know how to wake up and live with necrotizing fasciitis without my mom at my side.

The night she left, we held each other and sobbed for a good hour.  We alternated between I love yous and thank yous and I'm so proud of yous and how am I gonna do this without yous.  And prayers to God to keep me safe and healthy and brave.  And hugs and sobs.  It was such a precious moment.  I'll never, ever forget it, as long as I live.

This 3 months with my mom will always bond us in a way that we wouldn't have had if I hadn't gotten sick.  And for that, I thank God.  I thank God that He gave me the most incredible, faithful, generous, caring, compassionate, Godly parents...who would drop anything for their daughter...and did.

After my mom left that night, I went inside where Jon was waiting for me.  He knew I was gonna be a mess, and was there to hold me and let me cry for hours and hours.  It felt like I was saying goodbye forever, even though I'd see her again in a month or so, and even though my Dad promised to fly her right back out immediately if I needed her for anything.

It was a sick and scary twist of fate that the worst part of my entire illness happened just a few days after she left.  It happened slowly at first.

Jon always jokes with me about how much hair I lose....in the shower....on my brush....its everywhere. And it is so long and thick, that no matter how much I lose, you'd never notice.

The night after my mom left, I had taken a shower and washed my hair.  I was sitting on the floor blowdrying my hair when I realized that a TON of it was coming out in the brush.  I kept having to pull a chunk of hair out of the brush and keep blowdrying.  By the end of the drying, I had a huge fistful of hair in my hands.  I brought it to Jon, laughing, and said, "Oh my gosh, look at this!  It's crazy how much hair I lose!  haha!"  I remember him telling me, "That's not normal."  I laughed it off.

Over the next two days, I started noticing that my ponytail started feeling a little thinner.  Not too noticeable though.  I figured it was the conditioner I had used.  That night when I took out my ponytail, a handful of my hair came out with it.  What the heck? I thought.  I started brushing my fingers through my hair and with my fingers came handfuls upon handfuls of hair.  I started screaming.  It was literally like a nightmare that you're just praying is a nightmare, because there is no way it could ever be real.  We were 3 months away from my wedding, and my hair was coming out in huge chunks, completely out of nowhere.  I had no clue it was coming, and I had no clue why.  I remember just shaking and screaming.  Eventually I got into the shower and started washing it....and that's when the nightmare took a turn for the worse.  All of my hair was falling out.  And it was so long that the hair that was falling out got tangled in the little hair that was left, resulting in one big knot.  I got out of the shower and called my parents, screaming.  At first, they didn't realize how bad it was, and just thought I was overreacting.  My mom said, just put some detangler in it and try to comb it out gently.  "You don't understand!!" I screamed.  "It's all falling out.  Oh my god, I'm losing all my hair!!"  I sobbed like I've never cried before in my life.  I was shocked and terrified.  The only thing worse than losing all of your hair, is not knowing it's going to happen.  No one had warned me about this.  I hadn't been able to come to terms with it, like a chemo patient does.  At least they know it's coming.  I tried for about 4 hours to untangle the huge knot of fallen hair and hair that was still in place, but it wouldn't budge.  Eventually, I took a scissors and cut off my hair to above my shoulders (about 18 inches total).  I combed out the rest....which was very little.  I fell asleep on the bathroom floor, crying my eyes out.

When I woke up the next morning, I went through the whole tragedy all over again, as I realized it wasn't just a nightmare.  More hair was falling out, and by this time, about 75% of it was gone.  I ran to the beauty supply store to buy hair vitamins, rogaine, and this $100 shampoo that was supposed to help with hair loss.  Over the next few days, I took tons and tons of vitamins, ate protein at every meal, and used all the products.  I didn't notice a ton of hair loss, so I started to have a little hope.  I refused to wash my hair, because I was afraid that it would add stress to the hair.

When I finally had to wash it, the nightmare began again.  It came out in handfuls with the shampoo and I just sobbed and screamed in the shower as I watched it all go down the drain.  With most of my hair now gone, I laid on the bathroom floor and cried for hours.  Uncontrollable sobs.  It felt like a death.  Part of me was gone.  Necrotizing fasciitis had taken something else away from me.  Now, not only would I have scars all over my body on my wedding day, but I'd be bald.  Just when I had thought that things couldn't possibly get any worse, they had.  The hair loss sunk me.  "Why??" I cried to Jon.  "Why this...why now?? Haven't I gone through enough?  I just can't handle this.  I can't get over this."  He held me on that bathroom floor for a long time.  One thing I remember him saying, and it's something I'll never, ever forget.... "You've never looked more beautiful to me."  I knew then, that I had a partner in this battle.  I knew he still loved me, even though I was at the lowest of lows.  Even with scars covering my body, an almost bald head, and red, swollen cry eyes, he loved me.  Damn I am lucky.

If you've never had cancer and lost your hair, it's hard to understand why this was the hardest part for me.  Why it seems so dramatic.  all I can say is that a woman's hair is what makes her, her.  It's what makes a woman feel like a woman.  When I lost my hair, I felt like I had lost all my beauty, I had lost my sense of femininity. I had lost myself.  If it hadn't been 3 months before my wedding, I may have handled it a little better.  But this was just a blow that was too hard for me to take.

I locked myself in the house for two weeks before I decided to do something about it.  I hid in my misery and didn't talk to anyone except Jon, my parents, and some angry prayers to God.  This, I didn't understand.  I had taken everything that had been thrown at me and handled it with bravery and full faith in Him, but this I didn't understand.

We don't always understand why God allows horrible things to happen to us or our loved ones.  Sometimes it just doesn't make any damn sense.  And it freakin hurts.  And we scream and cry and pound our fists and lock ourselves in the bathroom for a week.  And I don't have all the answers.... I'm not supposed to.  We aren't going to have those answers until He allows us to, in Heaven.  But I know that everything that comes our way happens for a purpose.  Whether it's to test our faith, or grow our trust in God, or prepare us for a larger storm later.  Maybe for me, I lost my hair so that I could learn that outer beauty isn't the most important thing in life.  The most important thing in life is our love for God and for each other.  My husband loved me, hair or not.  My God loves me, hair or not.  And knowing that I have that kind of love in my life taught me that I can get through anything.

It took a long time to come to the point where I could write about this pain and the wounds that are still quite fresh in my heart.  I cried as I typed every word of this.

My hair has now (5 months later) started to grow back.  I still have to wear a hair piece, but hopefully it will be back completely in a year.

I survived.  I am stronger now.  I am God's chosen miracle.

In the next chapter of this story, I'll recount how God set it up so that I'd end up in the exact right place with a solution for my hair loss.  Because while He sometimes "taketh away", He aways "Giveth."  Exactly what we need.

Friday, July 26, 2013

Candles! Part 2.

I'm working on my BIG #14 post and it will be up this week....promise.  In the meantime, I felt compelled to write another candle post.  I found a few recently that I'm beyond obsessed with and I had to share them with you guys.  If you've been reading this blog for awhile, you may remember my candle post from last year.  You can find that here.

I'm constantly on the hunt for new and better candles with new and better smells.  While I still love all the candles I talked about on the last post, I have some new ones that are so utterly amazing, they have to be shared.

I'm not really a Yankee or Bath and Body Works candle kinda girl.  While there are a few scents from Yankee and BBW that I like, I'd much rather burn a unique candle that makes my house smell AMAZING and UNIQUE.

If you know me well, you know that I'm obsessed with the store, Anthropologie.  I love their clothes, jewelry, bath products, home decor, and most of all, their candles.  When you walk into that store, the first thing you notice, is that is smells AMAZING.  You can't really pinpoint what the smell is, but it's addictive.  All I can think when I go in there is.... I have to have my house smell like this!  Their most common candle sold there is their Capri Blue line.  I've tried all of the scents and they are all amazing.  Buy this line of candle, and your house will smell exactly like Anthro.  I like the volcano (that's the one that is always burning in Anthro) and the Aloha Orchid.  It is like Hawaii, but a million times better.

The Capri Blue line comes in lots of different jars and tins too, so you can find really great pieces in all of your favorite scents.  A candle is a piece of art, especially if it is in a beautiful glass jar like this one:
Capri Blue in "Aloha Orchid"

I have pieces like this all over my house.  And my house always smells amazing.  I'm a little obsessive when it comes to smell.  I cannot stand bad smells and I just think a great-smelling house is just about the most perfect thing on earth.

Another great line Anthro carries is the Voluspa line.  Their Santiago Huckleberry is another signature scent in the store.  So if you buy this candle, again, your house will smell like Anthro.  They usually have a lot of different candles burning in Anthro at once, but the two main ones are the Volcano and the Santiago Huckleberry.

I've been burning these Capri Blue and Voluspa candles for a few years.  AND THEN.  THIS WEEK......I FOUND THEM.

What? you ask
THE BEST SMELLING CANDLES EVERRRRRR.

Anthro never disappoints.  I had an Aloha Orchid in my hands ready to buy it, when I decided to peruse the "cooking" section of Anthro and found these candles.  Not only are they gorgeous to look at, but they smell so unbelievable, I almost don't want to burn them because I don't want them to run down.  I want to keep them forever!!!  Anthro better never do away with them, or I'll just die.  haha.  Actually, I think I'll head back over there next week and stock up.  Just in case.

Here is the first one:


The Fresh Gardenia & Grapefruit scent is clean, fresh, and yummy.  And how awesome is this hand painted ceramic jar??  I couldn't resist this candle when I saw the sailboats (you know how I feel about sailing) and that is Santorini, Greece on the back (one of the most beautiful places in the world that I'm dying to see).  And did I mention the AMAZING scent???  I can't say enough good things about this candle.

And then I picked up this beauty.  Which is now my favorite candle of all time.  It is the most delicious, intoxicating smell ever.  I loved it when I smelled it in the store, but it smells 10x better when you burn it.  The burning smell adds to its yumminess.  Whipped cream & pear.  SOO GOOD.  


And how cute is that jar?  The only thing I wish is that the candle were a little bigger.  Only because I want to burn it 24/7 and I feel like I'm going to be buying hundreds of these a week.  I just can't get over how good it smells.  And don't get me wrong.....I'm not a "food smell" candle girl in the Spring or Summer.  I don't bust out the "apple cider" and "salted caramel pumpkin pie" scents until I have officially deemed it Fall.  Fall and winter I'm all about the food smells and the "fireside" candle, but come Spring, I only burn clean scents, tea scents, gardenia/orchid, clean mixed with citrus fruit scents.  But this whipped cream/pear scent is burning right now, right smack in the middle of summer.  (In my kitchen of course).  The rest of the house is white tea, aloha orchid and gardenia grapefruit.  

Now, you might wonder.... do I work for Anthropologie?  Am I getting paid to write these candle reviews?  Absolutely not.  I wish.  No, I just am in LOVE with these new candles and had to share them with you because they will change your life.  (not really.  but kinda.)  :)

If you get them, let me know what you think!  Also, are there any scents you are CRAZY about?  Let me know.  I'm candle obsessed....share your favorites. 

Oh yes, one more thing.  No, these aren't the cheapest candles on the planet.  They aren't the most expensive either.  One thing I've learned over the years of candle obsession is, you get what you pay for.  Quality, great smelling, long lasting, lower soot (that black stuff that gets released when you burn a candle), candles are gonna be more expensive than the ones you buy in the candle section at Walmart.  But those Walmart ones aren't gonna smell nearly as good, the smell won't "last" as long, and you'll have more of that black stuff on your walls and ceilings.  Invest in some quality candles that are a little pricier....it will be worth it, trust me.  (Now I wouldn't run out and buy those Luxe candles the Hollywood stars have that are like $100 for a small jar)...but I don't mind buying a $15-25 candle at Anthro.  ps.  If you're in need of a good candle but can't afford one, let me know.  I'd be happy to buy a candle for a girl in need.  We all deserve a yummy scent in our lives to make our house a homel              













Saturday, July 20, 2013

The last 25 happies.

  J and I are going on a road trip to today to Wisconsin for a graduation party for our cousin, and look at me, up already at 3.  Insomnia is no joke.  I've been off of working nights for 8 months now, and I still can't sleep normally.  It really messed up my body.  It's funny, it's Saturday morning and some people haven't even gone to bed yet...ahhh college.  I've already gotten my 5 hours of sleep and am up for the day.  That is what happens when you're in your late twenties, I guess.

Alright, onto the happies.  the last 25 of them.  I hope you've enjoyed this mini-series, it sure was fun to think of 25 new ones everyday.  And I got so many emails, with so many lists....I LOVE YOURS TOO.  Maybe I'll have to do another series of 1000 at some point.

Anyways, here you go.  Have a great weekend, friends.

Travis Wall, faith, a good sale, delivering babies, naps, papyrus cards, Sonya Tayeh, Bloomingdales, decorating our home, my sorority (thetas at U of I), the handwritten letter I get from my grandpa every year on my birthday, the Bible, a good mountain/ocean combo, macadamia-nut crusted mahi-mahi, my cousin Bryan, puppies....all puppies, christmas, freedom, candles burning, hipsters (though i'm not one), Dr. G and Dr. M, dipped cones from McDonalds, HGTV & BRAVO, seeing the Pray For Amy pictures/cards/letters/bracelets, AND #100..surviving necrotizing fasciitis.

Friday, July 19, 2013

Today's happies! (50-75)


Working on BIG #14 but its taking some time.  It's not as dramatic as those first few posts when it was life or death, surgery after surgery, but what happened during 14 was the worst time for me, bar none.  It's been hard to decide if I want to share those horrible times.  It hurts to think about again and I'm struggling a little.  But if you want to know the story, you deserve to know all of it.

Today's 25 happies.  Breathe them in.

flowers, cotton candy, chalkboard, forgiveness, Restoration Hardware, vintage and rustic things, hugs from my nephew, family vacations, sunlight, boots (tall, ankle, combat, love them all), worship, trees- especially in the fall (there I go with fall again), falling asleep on my husband's chest, endorphins, the smell of fresh wood (like Home Depot....weird I know), pretty lingerie, live music, Mary Oliver poetry, surfing, saying our wedding vows (it.was.magic), art, Michael Jordan, being a nurse, Wustof knives & Boos block, fresh laundry.

By the way, thank you for the emails.  Reading your happies makes me happy. Love.



Thursday, July 18, 2013

BIG. Part 13.

I was home.

I have to say my favorite part of getting home was seeing Mady again for the first time in two months.  That poor dog.  When I first went into the hospital (which I don't even remember), Jon didn't really know what was going on or happening or going to happen.  We didn't make any plans for Madison.  He just threw me in the car and sped to the ER.  It wasn't until sometime Sunday afternoon when someone (I think my sister) went to my apartment and picked her up to take her to my Aunt Mary's where she'd eventually stay for the next few months until I got out of the hospital.

While my parents drove me home from the hospital, Jon went over to pick up Mady and bring her home.  I got set up on the couch with a hundred pillows covering my legs and abdomen to prevent her from jumping on me and hurting all my wounds.  They opened the door and she ran to me.  She jumped up ever so gently and kissed my face about a zillion times.  Mama and baby.  I missed her sooo much while I was in the hospital and will be forever grateful to my Aunt Mary, Uncle Bob, cousins Alexa, Megan, Rob, and Sam for taking her in and treating her as if she were their own, without question or even being asked.  What a blessing.



The next few weeks went by as best they could.  I was in constant debilitating pain, but I was on some pretty strong meds.  A nurse came to the house twice a week to check my wounds and get me what I needed in terms of supplies.  My favorite physical therapist ever (Kim) came 3 times a week for therapy.  Mom was there all day, taking me to appointment after appointment, helping me secure short term disability (I had been off work unpaid for 60 days then), trying to get me to eat, running errands to keep me comfortable.  She was an absolute angel.  Getting short term disability was no easy feat.  In fact, it was hell.  I can't tell you the number of hours she sat on the phone and the number of people she called to make sure I had that set up.  They sure don't make that process easy.  At some point, I got fed up and wanted to take a picture of my cut up body to show them what exactly they were going to be paying for.  Geez.

When Jon got off work, he'd come over and my mom would be off duty.  Jon would handle feeding me dinner (I never, ever wanted to eat ANYTHING) and I lost a ton of weight.  I completely lost my appetite and it wasn't until a few months later that I felt like eating again.  He'd help me at night until I fell asleep and then go back to his parents in Joliet.  My poor husband (fiancé at the time) literally worked 12 hour days, spent a few hours with me, then had an hour drive home only to do it all over again the next day.  I'm a lucky girl.

A few weeks after I got home, the nightmares started.  Remember this post?  Sleeping became next to impossible.  I constantly had this dream that I was right about to die....and I knew I was in a dream, so I'd try to wake up...but I couldn't.  And then I'd think I was awake only to realize I was still in the dream and closer to death and couldn't wake up.  Dr. M asked me about my dreams a few weeks after I was discharged and I told him about this nightmare.  He says it's common for people who almost die or go into cardiac arrest and are revived to have that dream.  He believes it's a flashback and not necessarily a nightmare.  Pretty crazy.

My knee was a major problem then (and still is one of my biggest obstacles to recovery now).  When I first went into surgery, the ortho surgeon had scoped my knee several times to see if the infection had spread to it.  At one point, she told us it hadn't, but at another time, she told us it had.  I read my medical records and it looks like they did aspirate infected fluid from the knee, so apparently it HAD spread to my knee.  Anyways, shortly before I left the hospital, when I really started hardcore physical therapy, my knee and leg swelled up pretty bad.  At first they were concerned I had a DVT (deep vein thrombosis or blood clot) so I had a doppler scan of the leg, and it was found that I didn't have a clot...thank God.  They couldn't figure out why it was so swollen.  They decided it was likely that the lymphatic system had been damaged with all the surgeries to the leg, and that I'd probably always have a problem with swelling in the leg.  GREAT.  Just want I wanted to freakin hear.

I could only bend my knee about 30 degrees (with assistance) when I first started therapy at home.  God blessed us with an amazing therapist.  Just another example of God being in charge of this whole BIG.  My therapist also happened to be a licensed lymphedema massage therapist.  When she saw my leg and knee, she was smart enough to realize right away that it was lymphedema and begin a massage regimen for the leg that helped HUGE.  To this day, I still have swelling, especially when I work my leg too hard or have a rough day of PT, but it is so much better than it was initially.  She really saved that leg.

It was about that time that I went to see the ortho surgeon that had initially operated on the leg/knee was the doctor I told you about here.  Dr. G and Dr. M wanted me to see an ortho about the knee just to make sure everything was okay.  They were concerned that she had damaged the knee when she was scoping for the infection.  My PT thought the same thing.  The ortho doctor was the doctor who told me I should forget ever running again, because it aint gonna happen.  Oh really?  I guess she didn't know I ran (okay, limp/ran) a 5K two weeks ago.  I have now mastered my limp into a sort of run that I call limp/run.  When I walk for short distances and if I'm holding onto something like a walker or the treadmill, I don't have a limp...usually.  But if I walk fast, for a longer distance that about 10-15 minutes, or try to run, I limp.  I'm hoping that eventually the limp/run will turn into a real run.  But that's  far ahead in the story....we'll get to that eventually.

Soon, too soon, it became time for my mom to go back to Virginia.  I was at the point then that I drive very short distances and I had my grandma and grandpa five minutes away who were begging to help more and would've driven me anywhere I needed to go.  My mom had been away from work at the point for 3 months.  Praise God for her work for letting her do that.  To Reston Montessori School, if you're reading this, thank you from the bottom of my heart.  It was so necessary for my mom to be there with me during that time, and because of you, that was able to happen.

The day my mom left was the scariest day of recovery yet.  And there were even scarier days to come.  the next post is going to be extremely hard for me to write.  And it took me a long time to decide if I should write it or not.  But I'm going to.  I owe it to you to tell you just how bad it got.  This Mary Oliver quote inspired me to tell these most raw & painful parts of my story.  Because it's my truth.  And if we aren't truth-tellers, what are we?


25 more happies.

25 more happies! And by the way, whoa. I slept in today. 6 a.m. baby.

These all make me smile.  What are yours?

white tea scented candles, puppy snuggles, family, maui/kauai sunsets, Asics running shoes, God, bird decor, chevron, coffee, paying it forward, girls nights, bold lipstick, marathons, Nordstrom, driving with the windows down in the fall, everything about the fall (did I already mention that? sorry :)  new socks, mani/pedis...always with Essie, DANCE (So You Think You Can Dance changed my life), a clean house, Cuisinart, beach running, chic hotels, high school sweethearts, my puppy's eyelashes. 

When I first started today's list, I listed like 7 stores in a row and then I was was like....uh..wait a minute.  Haha.  Clearly I love to shop.  As you go about your day today... when frustration hits, when you feel angry, or sad, or nothing.... remember your happies.  They are what will help carry you through.  Mine certainly have carried me through.  Focus on those.  Remember what Mary Oliver said:



Wednesday, July 17, 2013

25 Happies.

Good morning, Friends.

Welcome to 4:30 a.m.  Grab a cup of coffee and hang out awhile.  Yesterday's post about Jill warmed my heart.  It meant so much to me to share with you the fruits of your labor.  YOUR prayers produced direct results.  Just like YOUR prayers produced direct results with me.  Are you seeing a pattern here? I sure am.  And like I've said in the past, if my heartaches can lead one person to Jesus, it is all worth it...ten times over.  I'll go through nec fasc again if that's what Jesus wants.  If that's what He calls me to do.  In life, we need to stop trying to constantly stop bad things from happening to us and just embrace where God leads our lives.  And it freaking sucks sometimes, not gonna lie.  But living in fear isn't really living.


 My life is so much more fulfilling now that I feel like my little blog is somehow in someway affecting someone.  And it all started with necrotizing fasciitis.

Thinking that way can be pretty scary.  And being awake at 4:30 a.m. is scary enough.  So, in the spirit of being HAPPY.  I'm gonna give you 100 things to be happy about, 25 a day for the next four days.   These, of course, are my happy things.  Maybe we share some of them, but you probably have a list of your own.  What are yours? Share some happies.  If you're having a hard time thinking of some, feel free to try out mine.  What's mine is yours and happiness is meant to be shared.  Comment below or email them to me aallbb2231@gmail.com.

By the way, these are in no particular order.  The first 25:

running, skinny jeans, hawaii, music that moves you, jcrew chino shorts, warm blankets, fireplace fires, mimosas, mason jars, prayer, ran ban aviators, being called Aunt Amy, diet coke, Husband, the show Roseanne, football, anything and everything in the Fall, sailing the sea, the sea itself, rain runs, laughing, E.T. the extraterrestrial, my dog Mady, reality TV, Anthropologie. 



See you tomorrow for some more happies, and BIG part 13.


Tuesday, July 16, 2013

Love Story. Update on Jill from McDonalds!

Sweet friends.

My cup runneth over.

Remember when I told you about my friend Jill from McDonalds?  If you haven't already, you can read  about my encounter with this warrior mama  here.

And then I gave you an update on her.  Go ahead and read this.

Well thanks to YOU and your beautiful and faithful prayers, our Jill is doing amazing.  I got a call from her this morning that broke me down...in the best way.

She had gone up to live with her parents a few months ago and taken her sweet kiddos with her.  Her parents were able to help her and heal her and love on her and her kids.  She listened to me when I told her my biggest piece of advice to her was to pray everyday.

"What should I do?" She asked me the day before she left.
"Pray," I told her.  "Everyday.  No matter what.  He will listen."

And she did.  And He did.

Jill hadn't worked ever, because her husband had kept her pregnant and/or at home raising the kids. It was one of the many ways he controlled her.  A few weeks after moving in with her parents, she started thinking about a job.  She knew that she somehow needed to support herself and the kids.  Eventually, her ex-husband is going to have to pay or go to jail, we all know that.  But in the meantime, he's giving her nothing.  Little does he know, his leaving gave her everything.

She now has a job at a daycare.  A Christian daycare where they're letting her bring her own kids with her.  Boom.  She paid the first month's rent on a new apartment for her & the kids.  The first time she's ever paid rent.  The pride in her voice when she told me how good it felt to write that check.  How good it felt to be FREE.  She has self-confidence and self-worth.  She has JESUS.

She was baptized on Sunday.  I scolded her for not inviting me.  When I heard her describe the feeling she felt when the pastor dipped in down into the water, I lost it.  She is whole again.  She is saved...in so many ways.

Even though she will soon be a divorced, single mom....even though she planned on leaving this earth and leaving those babies without a mother....even though she let a man hurt her and her kids for too long....even though she is as much a sinner as you and I... Jesus loves her more than anything.

And that is the greatest love story I've ever heard.

A conversation.

Old man: "Young lady, are you okay?"
Me: "Yes, Sir. I always cry when I run*".
   *limp/run

Conversations at the gym. I always cry on the treadmill. Every damn time. Gratitude. Pain. Fear. Freedom.

Comeback.

Monday, July 15, 2013

Q & A

Alright people, I owe you this one.  I've been getting reader emails for months asking me questions, and  I've decided to post and answer some of them.  Mostly the ones that seem to repeat.  If you have a question you want submitted, email me at aallbb2231@yahoo.com and I'll answer your email and possibly feature it on a Q & A part 2.  But, here goes:


Who took care of you at home?  Does your fiancé live with you? (J. Swezler, Vancouver)
A: My mom stayed with me for the first month I was home.  She actually slept at my grandparents who live about five minutes away.  Her work let her stay as long as she needed to.  They were wonderful!  No, Jon and I didn't live together until we got married in May.  But he'd come most nights after work and take the "night shift" so my mom could go home and sleep.  

What is your typical day like?  Are you still in a lot of pain? (T. Ziller, Arlington Heights, IL)
A:  Unfortunately, yes, I'm still in a lot of pain.  It isn't as debilitating as it was when I first came home and I've learned lots of ways to help manage it, but it is still an almost constant part of my day.  Some days, for no rhyme or reason, I can't move it hurts so bad.  My typical day, I wake up REALLY early...usually around 4:30 or 5...in pain.  That's usually when I write, read my bible, pray, check my email, and then watch an episode of Roseanne. LOVE that show.  Most days, I go back to bed from about 8-10.  Then I get back up and go to PT which is in Elk Grove.  PT is an hour of hell, so when I come home from that, I usually have to ice my leg for an hour.  Then I have lunch if I'm hungry, but most times I'm nauseous from the pain so I don't eat much, and then when the pain calms down a little, I head to the gym.  I usually go in the morning if I don't have PT that day, but if I do have PT, I go in the afternoon.  I spend about an hour or sometimes two hours at the gym and then I head home and make dinner for my husband.  We watch an episode of Roseanne while we eat (we eat in our TV room because we don't have a kitchen table yet in our new home.  It's the only show we both like, haha.  I go to bed around 10 with J.  So basically right now, my job is rehabbing.  It's painful as hell, but it's the only way I'm going to get better.  My doctors constantly tell me I'm doing too much, but  I am stubborn and I want to be better.  I can't wait to be back at work and running marathons again.  

How often do you have to see your doctors? (A. Carmene, Salt Lake City, UT)
I see my Burn Unit surgeons (nec fasc doctors) Dr. G and Dr. M every 2-3 weeks now.  Initially it was once a week for awhile.  When I first got home, a nurse came twice a week too.  So it's kinda a lot of traveling back and forth to Loyola, but they know my illness, they know what was done to my body, and understand my recovery.  I go to PT 2-3 days a week, depending on the week.

How bad is the scarring?  (R. Simony, Schaumburg, IL)
Honestly, it's pretty damn bad.  My right leg has a huge divet in it that takes up most of my thigh and my outer right leg has a scar that goes from my knee to my hip.  My left leg has a skin graft scar that takes up my whole quad.  My abdomen might be the worst.  I have a huge divet that goes from my hip up to my rib (about the size of a subway sandwich), a scar that looks like a c-section scar above my pelvis, and a long thick scar that goes from my hip to my rib on the opposite side as the divet.  I also have lots of little scars from random incisions during the various surgeries.  I will have to have extensive reconstructive surgery to fix the scarring, for both comfort, physical, and cosmetic reasons.  It's not really a choice, it has to be done.  My doctors want me to wait until about a year out from my initial surgeries, so probably in December-January, it will get done.  

Did I read that you lost your hair?  What happened?? (J. Macaby, Waco, TX)
Yes, I did.  Worst part of my illness.  I'll get to that on the blog....Keep reading :)

How was the wedding? Are you gonna post about it? (T. Bailey, Joliet, IL)
It was incredible.  Best day of my life.  Perfect in every way.  Yes, I'm gonna dedicate probably a few posts to it.  I'm going to finish the BIG first...or at least, catch the story up to where I am now, and then write about the wedding and honeymoon.  As you can guess, it was a very emotional day for J & me....and our families.  After everything we'd been through with my illness (as well as 12 years of dating), it was a day full of emotion.  We ALL cried.  ALOT.  :)  It was breathtaking and beautiful.  

You should have J do a guest post. You talk about him, but not a lot about how it was for him.  Do you think he'd do it? (T. Mack, Ashburn, VA)
First off, you're from Ashburn?  Do you know my parents?  They live in Ashburn.  I wonder if you're one of their church friends who prayed for me :)  Anyways, I doubt I'd be able to get Husband to write a guest post.  What I went through was horribly painful for him, and as he's told me, the worst time in his life.  He doesn't like to talk about it, much less write about it.  I'll ask him though :)  

Ok, that's all for now, guys.  Thanks for the questions, and again, feel free to email me at aallbb2231@gmail.com if there's anything else you want to know.  If you don't want your email posted in a Q&A, specify that in your email too.  Thank you SO MUCH for your constant support and prayers.  


Something BIG. Part 12.

Before I knew it, it was time to leave my little nest at Loyola and head home.  While we were all thrilled, we were equally scared to death.  Although I hadn't shown signs of infection in a month, my pain was still strong as ever, my wounds were huge and required a great deal of care, and I could barely get around.  I was able to move around for very short bouts of time with the walker, but still needed a lot of help.  My mom was still helping me shower, I couldn't get in and out of a chair by myself, had a very, very hard time dressing myself, and couldn't put socks or shoes on.  In fact, I couldn't lift my right leg at all.  When I would get into bed, I'd have to pull myself on with my arms and then use my arms to pick up my right leg and put it onto the bed.

Then there was the issue of Madison, my dog.  She'd been staying with my Aunt Mary & Uncle Bob for the last 2 months and while I couldn't WAIT to see her, we were all afraid that her affection would hurt me...literally.  Mady loves to jump up and sit on my lap, cuddle, sleep ON me, etc.  If anyone were to TOUCH my legs, it would literally feel like a knife stabbing me open...now imagine a dog jumping right on your lap and their fingernails....... ouch. It hurts just thinking about it.  To this day, she's not allowed to sit on my lap or walk across me or jump on me when I get home.  8 months later, it's still very, very painful.

My mom had taken a leave of absence from her work and (PRAISE GOD) they let her stay with me as long as I needed....and I needed it.  She moved in to my apartment for the next month, and took care of absolutely everything.  I have the best, most generous, caring, amazing, Godly parents in the world.  I couldn't even begin to tell you how they saved me time and time again during my illness.  How they put their lives on hold in Virginia and came to my rescue.  How their prayers healed me.  How their faith strengthened me.

The day I left the hospital was a bittersweet day.  The nurses and I were all in tears as my parents packed up my room.  Nurses from the Burn Unit (where I had spent a majority of my time) came down in groups throughout the day for hugs and stories and cries over the battle won.  Those nurses at Loyola were angels.  They were family.  And they knew everyone in our family.  When Dr. G and Dr. M came down to say goodbye (my physicians/surgeons for nec fasc who saved my life), we all lost it.  They knew as well as I did that I wasn't supposed to live.  That I wasn't supposed to have a right leg.  That I was a damn miracle.  Dr. G once told me that if I hadn't been a marathoner, I would've died on that first night.  My heart and runner's lungs were strong and were able to sustain the hyperventilating and heavy breathing that ensued for hours upon hours because of the sepsis, shock, and pain.  That morning before I left the hospital, Dr. G promised me he'd be at my first marathon.  In Hawaii.  Like I've told you before, Dr. G is pretty damn fabulous.

Once everything was packed in the car and ready to go, the doctor gave me a stack of prescriptions to fill (literally like 30 different meds) and my dad wheeled me out to the car.  I was OUT OF THE HOSPITAL for the first time in 2 months!!

The ride home was horrific.  I was sitting in the back, basically laying down with my legs up, because I couldn't bend my knees at all, so I couldn't handle a "sitting" position unless my legs were flat out in front of me.  Every bump or jerk, and I'd wince and stop breathing.  Towards the end of the trip, I was in tears.  I feared that the pain would never go away.  I feared that I'd never be the same again.  Now, 8 months later, I know that I won't.  Those 2 months in the hospital and the hell that I endured changed me forever.  Not only did it change my outlook on death, but it changed my outlook on life.  God showed me that I had strength beyond my imagination.  I learned that if I could get through that, I could get through anything.  And I was stronger because of it.

I learned that prayer produces miracles.  I learned that miracles aren't just Old Testament stories.  God's performing them all the time, all over, on all of us.  There are no coincidences, people.  I didn't live through necrotizing fasciitis because I'm a healthy marathoner and worked really hard to stay alive.  (Those things helped me, but I was those things because God made me those things).  12 years ago, when I started running marathons, God knew that one day I'd have to fight for my life against a deadly infection.  HE IS IN CONTROL.  And when you realize that, no matter how hard, painful, horrible things can be, there is a sense of peace that transcends the pain and horror of it all.  


Although I had made it out of the hospital, I still had a long road ahead of me.  My BIG was far from over.  In some ways, it was about to get even BIGGER.  There were some horrible things that were about to happen as I recovered that are still so painful and raw, I'm afraid to tell you about them.  Necrotizing Fasciitis is no joke.  Please pray for strength and courage as I tell you how my recovery at home unfolded....what happened....and how I lived through it.  One last picture to show you.  This is the night I came home from the hospital.  Jon posted it on his Facebook with this caption:  


"Everyday you are alive and healthy on this planet is a gift from God.  Don't ever take it for granted."
Smart guy, that husband of mine.