Sunday, March 23, 2014

My name is Karli and here is the beginning of my story.  This blog is designed to help document my journey of discovering strength mentally and physically.  

To completely understand why this is so important to me I need to go back, way back to 20 years ago when my life changed dramatically and my journey began.

20 years ago this past October 21st marked the anniversary of when I became paralyzed.  Yes, paralyzed it sounds pretty crazy and to be honest it was.  The morning of October 21st, I woke up and started getting ready for school.  I took a shower and came back into my room to get dressed.  While I was getting dressed I started to feel dizzy and my head felt foggy.  I decided to lay down for a second, as I laid down the dizziness seemed to go away and I decided to get back up and continue getting ready.  As I tried to sit up I realized something was wrong.  I couldn't feel my legs.  I remember very vividly the emotions I felt at that moment.  I wasn't scared, I was confused.  Thinking to myself I must have pinched a nerve or laid down wrong.  I attempted to stand up but, fell straight down to the ground.  Because of my stubborn nature I tried to stand up again.  I grabbed onto my bed post and tried to pull my body to a standing position.  My legs were flopping around and I had no control over them.  The strength in my arms got me up for a moment but, as soon as I let go I hit the ground again.  There I found myself laying on the ground not being able to move.  The reality of what was happening still not completely sinking in.  I remember thinking if I just gave myself I few minutes I would be able to get back up and walk again.  I laid there for what seemed like forever (in reality it was probably only seconds) and I attempted again to get up.  Grabbing onto the bed post again hand over hand trying to lift my body to a standing position.  I remember for the first time realizing what "dead weight" felt like.  I thought to myself over and over why are my legs so heavy?  This attempt I was a little more stubborn and I managed to scoot my body back onto my bed.  At this point I realized I needed some help.  I called for my sister and I asked her to go tell our Mom that I couldn't walk.  

So this is a part of a story I didn't realize was going on.......  As I laid down stairs waiting for my legs to start working.  Upstairs my Mom was attempting to bath her youngest daughter who had the chicken pox and my brothers (ages 6 and 4) were in the kitchen attempting to make their own breakfasts, which included Rice Crispies and sugar, lots and lots of sugar. Later I found out that the sugar was all over the floor. At this time my Mom was expecting her 7th baby and I'm positive was feeling overwhelmed to say the least.  When my sister came up and said I couldn't walk.  I'm positive disbelief set in.  How could this all be happening right now?  While her husband is gone at work!  She was alone trying to get all these kids out the door for school and now her oldest says she can't walk.

My Mom told my sister to tell me to come upstairs and tell her what is going on.  My sister came down to relay the message to me.  I remember wondering how I was going to get up the 2 flights of stairs?  But, I rolled off the bed and started army crawling down the hall.  This was the weirdest sensation ever!  My legs literally dragging behind me.  I felt like I was dragging a 100 pounds of potatoes.  Slowly I made it out of my bedroom and into the hallway.  While in the hallway my Mom came down to see what I was doing?  There she watched me struggle a little as I attempted to army crawl toward her.  She said to me jokingly "If you wanted to get out of school there are better ways of doing it."  We sat in the hall talking for a few moments.  She was asking questions about how it happened.  If I had fallen, did I hit something?  Looking for anything that would make sense out of this situation.   

With my Mom being Pregnant she wasn't able to carry her 12 yr old daughter out to the car.  My Mom quickly called her Mom and Dad my Grandparents and they came over to help out.  My Grandpa carried me out to the car while my Grandma took care of my siblings as we left for the hospital.

When we arrived at the Hospital my Dad met us in the ER with hospital staff.  There the questions started again.  Over and over again the same questions.  Did you fall?, have you been depressed?, have you felt weakness over the past few days?, can you feel your legs?, can you feel your arms? Questions and more questions.  The gravity of what was going on still hadn't hit me.  I just sat there waiting for my legs to start working again.  It wasn't until Hospital staff came in and told me they needed to run some tests that I knew this was serious.  First drawing some blood, simple enough.  Then checking reflexes and simple neurological tests.  My heart dropped as I watched my legs lay there un-responsive.  After running these simple tests they sent in someone to ask me more questions.  Then after that they came in and told me they needed to perform a spinal tap.  They explained the basics of it and my heart dropped.  I HATE needles and I literally couldn't run away from the situation.  I laid there trapped.  After performing the spinal tap the Doctor showed me the needle to prove how brave I was.  He would never have guessed doing that would make the next following weeks so much more difficult not knowing I would under go so many more spinal taps.  

After the spinal tap, to the MRI machine.  They performed a full body MRI.  This is insane!  An MRI on just one location of the body can take over an hour.  I was in and out of the MRI machine for hours!!  I remember feeling so scared inside that tube, so confused why is this happening?  Why can't I move??  After they completed the MRI, I was admitted and brought up to my room.  They brought me a late dinner it was a turkey sandwich and a bag of Doritos.  My Mom was talking to a nurse while I was attempting to open the plastic baggie with the silverware and napkin in it..  I remember focusing so hard but, my hands just wouldn't work.  They wouldn't open the bag.  My Mom and the nurse turned and that was the first time I saw fear in my Mom's eyes.  She asked me if I was having a hard time with my hands.  I said yes.  She helped me open my silverware and we both realized whatever was going on in my body wasn't stopping at my legs.  

The next few days were filled with test after test and No answers!  The hospital and Dr felt like they had run out of options.  Not having a clue what was going on they decided to send me home.  I remember for the first time really crying when they told me this.  I wasn't crying because I wanted to stay in the hospital I was crying because in my mind I thought they would fix me.  I thought I would walk out of the hospital not be sent home in a wheelchair unable to do anything on my own.  That is when my new reality hit me.  I was now a 12 yr old quadriplegic.  

At home things were different.  My parents moved me upstairs and I shared a room with my baby sister.  So was convenient because I was on the top floor near my parents, bathroom, and Kitchen.  I also could use the baby monitor if I needed any help.  My family literally had to help me do everything.  I was unable to do the simplest of tasks on my own.  I will forever be in their debt for all the many hours of service performed on my behalf during this time.

Still without a diagnosis my family sought help from other Doctors.  We would travel to and from Primary Children's Medical Center where more tests were performed.  Doctors and more doctors were visited and still no answers.  The tests would always turn up a-typical but, with no conclusive answers.  I was told I could have had a stroke because there are infarctions in my lower spine.  I was told I could have MS, I was told I could have GBS.  So many different answers but, nothing conclusive.  After a really really long time with so many tests and no answers I asked my parents to stop taking me to the Doctor.  I was done with the pokes and the questions.  My parents and I decided instead of looking for an answer to the questions "What do I have that is causing me to be unable to walk."  We started looking for the answer of how we can overcome this.  That is when intensive physical therapy took a front seat to my treatment.

Physical Therapy was tough physically but, mostly mentally.  I remember feeling so frustrated that I couldn't do the simple things.  Remembering what it felt like to be able to do them made it almost unbearable at times.  During physical therapy I was able to do things I was told I couldn't do.  This was such a powerful lesson to me.  I learned the power of the mind and how when you are determined miracles can happen.  Each day with the support of my family I would work at the physical therapy.  Slowly learning how to crawl, bear crawl, walking holding on to bars, walking in water, walking with a walker, walking on a treadmill, standing on one leg, attempting to jump.

After years of physical therapy I was able to go into a school and walk without the assistance of a walker or the wall (I was way to prideful to ever use a walker at school) I proved to myself and my Doctors I could do something that at times we all thought was impossible.  At that point I decided to stop physical therapy and just be a normal teenager.  I was happy with my progress.  I was proud of where I had come.  I still had residual affects and lack of sensation but, I could deal with that.  I was just happy I could walk.  I didn't care if I couldn't run or jump.  I just was happy to walk.

Flash forward to 2008.  I was a now a divorced single mom with 3 kids.  Wow life happens doesn't it.  I started dating this guy named Jeremy.  His Mom was a distance runner and truly loved sharing her passion with others.  Jeremy and I were getting pretty serious and thinking about maybe getting married.  Jeremy's Mother asked if I would want to run the Disneyland Half Marathon with her in the upcoming Fall of 2008.  Wanting to impress his Mother I agreed to this.  What I was thinking I will never know.  So over that Summer I trained for my first Half Marathon.  It was a lot of fun realizing I could actually run.  I had never tried before scared that I would fail.  I wasn't fast but, I could do it.  Throughout the summer I trained and planned a Wedding.  Jeremy and I had gotten engaged and we were going to get married just 2 weeks after my first Half.  September came and I felt very ready for the race.  I remember how excited I was to do something I never thought possible!  My Parents and Grandparents were so excited for me to conquer this awesome challenge.  Upon completion of the race I knew I was going to do that again!  Who knew in the years to follow I would run over a dozen Half Marathons, 6 Ragnar Relays, and countless 5k and 10ks.  I was feeling healthier than ever.  I was running!  I was doing something I never thought possible.

Well, my story doesn't end there.  That is actually where it begins.......

In April 2012 I had just completed a Ragnar Relay in Southern California.  While running the last leg of this race I realized something was wrong.  My left leg was not working at all.  I was literally dragging it.  I pushed through the finish of this race giving it everything I had.  I literally threw up all over the finish line.  When I came home I knew I needed to see a Doctor.  I knew this would result in a lot of tests, I knew this would result in a lot of questions, I knew there was the possibility of no answers but, I knew I needed to go in.  I first went in and saw my normal General Practice Physician.  He knows my history so its easier going to him first.  He said what I knew he would say and that was I needed to see someone more specialized, a Neurologist.  I kinda have a thing against Neurologists.  They are super smart but, seriously they don't know how to talk to real human beings.  I always feel like a piece of meet or the side show at a circus whenever I go and see a Neurologist.  Despite my dislike for these Doctors I made an appointment.  First we did an EMG, MRI, Spinal Tap, and numerous blood tests.  My blood tests were coming back very abnormal.  My MRI's showed leasions in brain and spine, and the EMG came back with post polio. The Neurologist gave me many options of what this might be.  Lou Gerhigs Disease, Myothemisgravis, MS. Cancer, and many more weird diseases no one has ever heard of.  Throughout all these tests my left leg was becoming weaker.  I could visual see it shrinking.  I continued to run and train the best I could for upcoming races I had.  My running friends rallied around me letting me know they didn't care if I walked the race they just wanted me there with them.  After all the testing we knew we needed to take a biopsy of the muscle tissue from my left leg.  

I met with the Surgeon and set up the date for surgery.  The Surgeon assured me just like the Doctors did that the muscle biopsy will tell us everything!   You have no idea how excited I was for the opportunity to actually have some answers. Now being a Mother of 5 children I wanted answers more than ever.  I have so much more I'm living for.  

After the Surgery the Surgeon came and spoke with me.  He let me know the surgery was more extensive then he had planned.  How he explained it to me is that normally when you go into a leg to get a biopsy it looks like a piece of uncooked steak.  He would normally remove a small portion and be done.  But, apparently when he cut open my leg it looked like a piece of meat that had been in the crockpot for hours, tissue just shredded.  He told me he had to dig for a proper biopsy.  So I will have a bigger scar and a lot more stitches internally.  

I still was hanging onto the hope that even though he had to dig he still got a biopsy and the results would be in soon.  The recovery from the Biopsy was very difficult.  I could barely walk around at all.  For those who know me.  I'm not one to ever, every sit down and that is all I could do.  Those 2 weeks seemed like an Eternity! I called the Doctors office the morning when the results were supposed to be in and they told me that because the biopsy was so delicate they needed to freeze part of it to run tests and that it would be another 2 weeks.  I wanted to scream!  I was literally watching my left leg disappear and I was living with the real fear I was going to be wheelchair bound again.  Well 2 weeks passed and I went back in for a post op with my Surgeon.  While in his office he asked me if I had heard the results?  I told him I hadn't but, hoping any day. He said he thought he had seen them come through earlier.  I asked if he would look and share them with me.  He left the room for a brief moment and returned with the results.  I knew when I saw his face the results were not what anyone wanted.  He started out with telling me he has never seen this (to be honest I'm pretty used to that, Doctors say it to me all the time with my test results) I asked, well what is it?  He said there was no living muscle tissue found in your leg.  This made it impossible to perform diagnostic tests on the biopsy.  I lost it, I feel so bad I just started crying in the office.  I had just gone through all of that and NO ANSWERS again NO ANSWERS. The Surgeon told me he would like to take a biopsy of my thigh and test that.  But, truly at this point it didn't seem worth it to me.  I knew now whatever is going on is eating my muscles and my left leg is first to go.

Later visiting with my Neurologists he seemed equally as boggled by the results.  He asked me to go through a few more diagnostic tests, CT Scan another Spinal Tap (this one resulted in a blood patch a few days later, so fun.)  These tests resulted in more questions and still no answers.  They found a mass in my Thymus (I didn't even know what that was) and the complete MS panel came back negative but, apparently there are a percentage of people who have MS who's results come back negative.  Throughout this time a new symptom appeared.  My muscles started twitching on their own just randomly.  It seemed worse at night but, everything seems worse at night.

After telling my Doctor I was done with testing and that I would continue to come in to get check ups and to analyze what is going on with my legs but, I was tired of all the testing emotionally and physically.  I asked my Doctor who at the beginning of this journey was so sure he would find a diagnosis (he told me quite a few times he would give me answers) What he thought I had.....He said to my I would diagnose you with A-typical ALS.  I asked the doctor what he would suggest me do.  He suggested a heavy treatment of Steroids.  After reading the side-effects I opted out of that treatment option.  My family and I didn't agree with the Dr's "diagnosis" or at this point guess.  We really feel what happened when I was little is connected somehow to what is happening now.  Only time will tell. 

So now there I was again with pretty much nothing.  I knew I needed to do something physically to gain strength back into my left leg.  If this disease eats muscle then I needed to give it a lot to eat.  So I kept running (a lot slower but, running) and began physical therapy.  

When I started physical therapy the therapist told me dead muscle doesn't  regrow.  So we needed to focus on other areas.  To be perfect honest I became really frustrated with physical therapy.  I wasn't getting anything out of it.  They weren't pushing me and I needed to be pushed.

I also was struggling with the idea of what the Doctor said "ALS"  I can't have ALS seriously I have to prove to them whatever is going down in my body is not going to take me down.  ALS always wins and whatever I have I'm going to win.  So I set a goal to prove these Doctors wrong and to show them I can become stronger even though something in my body is destroying my muscles and wanting me to become weaker.

I continued to get weaker and weaker and I was talking to a close friend of mine who had started working out at a local Crossfit Box in my area.  I asked her if she would be my personal trainer.  She laughed and told me I just needed to come in and try Crossfit out.  I laughed at her and said that is only for "Strong People."  Well, after talking for awhile and really realizing I have nothing to lose.  At this point I'm just getting weaker trying something couldn't hurt.

So June 2013 I joined Crossfit Utah Valley and started my Journey to gain strength mentally and physically.  I'm literally on a journey to save my life and to insure I will be able to be an active and healthy Mom for years to come for my 5 kids.  I live each day thankful for what I have and thankful for what I can get out of tomorrow.  I will bethankful always for what I have and for those around me helping me achieve goals never thought possible.  Follow me on my Journey of Motherhood, Health, and Determination.  This is just the beginning of my Journey not the end! 

1 comment:

Ashley said...

WOW!! Karli, I had no idea! I had a very hard time reading your story through all the tears that came to my eyes! I don't even know how to to express the words i want to right now... I want to express a very HEART-FELT love to you. You are an amazing woman! I wish you well in this journey!! Thank you for sharing your story!!
Sincere love and prayers sent in your behalf. Stay strong!