the challenge...

Ok so I honestly don't know one person that has not done the ALS ice bucket challenge. I can’t believe what social media has done to bring awareness to millions across the world! But it also makes me wonder if people even know what ALS is. I'm sure most people know that it is fatal dieses, you end up in a wheel chair or that you end up not being able to talk. 

In my ice bucket challenge video I mention that I was tested for ASL. I was absolutely terrified when they told me it was a possibility that ALS could be the reason why I was struggling with the simple task of walking. 

So... as all of you know I was diagnosed with multiple sclerosis (MS) and not Amyotrophic lateral sclerosis (ALS AKA Lou Gehrig’s disease) so my point of this post is to not only inform people of what ALS is but how it is related to my disease MS.

The official type of MS that I was diagnosed with is called progressive relapsing MS (PRMS) the least common of the four disease courses, it is characterized by steadily progressing disease from the beginning and occasional exacerbations along the way. People with this form of MS may or may not experience some recovery following these attacks; the disease continues to progress without remissions. Unfortunately ALS does not have "remissions" at all. I am lucky enough to be able to enjoy life to a certain extent. ALS is very progressive and fatal. My MS is progressive, but not fatal.

Both diseases attack and destroy the body, affecting muscle and nerve function. For that reason, they share many of the same symptoms, especially in early stages. Initial symptoms include:

•       Muscle weakness and stiffness

•       Loss of coordination and muscle control

•       Difficulty moving limbs

Though both diseases appear to have much in common during the earliest stages, the progression, treatments, and prognoses for ALS and MS are very different. However, in both cases treatment paves the path toward a healthier, more fulfilling life as long as possible.

As of today because of the “ice bucket challenge” $110.5 million has been raised! What does this money do for the

ALS association? The money raised not only go towards research of the disease to find a cure, but also allows financial support to those suffering with the disease and provides vital benefits.

I am so thankful for associations like this. For example my current monthly medication is about $5100 a month, but because of money that is raised through foundations I pay just $10. So I know the ice bucket was all sorts of fun, but what it really comes down to is raising money for those who have to suffer everyday and want nothing but to live a “normal” life. You never realize just how lucky you are until the simple things in your life are taken away.

If you have done the ice bucket challenge I now challenge you to DONATE! I don’t care if it’s a $1, it still makes a difference.

SNAP: done or taken on the spur of the moment, unexpectedly, or without notice.

I was inspired to share this story because of  my sweet friend Kalie. Who wrote her last blog post saying "I like to think that I am a pretty real person. So I'm about to get real with my blog. I don't want to write about the hard things in life to get sympathy from anyone. I want to write about the hard things in life so that maybe one person can relate to something I've dealt with and know they aren't alone." 

I cannot  agree more with the above statement the only reason I feel inclined to share this is in hopes that I may help just one person.

The following story was written the week I got out of the hospital.

I recently took an unexpected journey. The phrase “I just snapped” has taken on new meaning in my life. What is often times considered a taboo topic, or a hush-hush situation has indelibly been impressed on my mind in another personal way. My first experience with a drug-overdose and a loved one occurred in 2007 when I was just 18 years old. One of my older brothers (the one closest to me in age), became addicted to pain killers. At the age of 25, in an attempt to thwart some of the uncomfortable, if not painful, withdrawal symptoms of addiction, took a combination of methadone, with anti-anxiety medication with alcohol which subsequently caused him to pass away in his sleep. We’ve always believed that while it wasn’t his intention to end his life, we do believe that such was his emotional and mental pain at the time, that he inadvertently succumbed to self-medicating in the only way he knew how to stop the suffering.

While dealing with his death, it quickly became our family’s philosophy to be forthcoming with the truth of the cause of his demise. In his obituary, we strongly felt the importance of being honest and outlining the events that led to his passing. In doing so, we found strength in our loss and even hope in our future, by dealing with the reality of the situation instead of denying the details of his death.

Four years ago, I was diagnosed with Multiple Sclerosis (MS) at the tender age of 21-years old. My husband and I had been married for just over 1-year. It has been a struggle to say the least, but I felt that I have managed the disease well. My husband and I were able to graduate college, buy a house and this past August, welcomed our first child.

During my pregnancy, I was the happiest and healthiest that I’ve been in a long time. I was able to do things physically that I hadn’t been able to do since my MS diagnosis; among which was being able to walk normally and without the aid of a walker! For a short-time after delivering our sweet, healthy baby, my good health continued for almost 3-months. It was then, that my MS returned like a woman scorned with a serious score to settle! When our baby girl was about a month-and-a-half old, we made a move down South so my husband Jeff could pursue a new job opportunity. We ended up living with his grandma for 2-weeks before finding a place of our own. My health was stable at this point. But as we moved out into our apartment, I noticed a slight decline in my health. Preparing for the worst, I contacted my doctor and was in for a steroid treatment that same week. 

1st treatment of 3 at the Sevier County hospital

We continued to make the drive to and from Salt Lake for medical treatments. My ability to take care of my daughter was quickly diminishing. I couldn’t walk with her, carry her or get up in the middle of the night to get her out of bed to feed or change her.  Just as my health was taking a turn for the worse, so was Jeff’s new job; both of which caused me a great deal of stress which only aggravated my MS. Jeff and I quickly made the troubling decision to move back to Salt Lake to be closer to both family assistance and medical help. My health continued to go downhill so I obtained more medical treatments which failed to help. I was falling constantly and was often the target of rude comments made by ignorant people. I generally tried to laugh these occurrences off and maintain my good sense of humor by posting such stories on Facebook while presenting them in a playful inflection. Soon thereafter I reached my limit when I fell, not only once, but twice in the same trek to my car and had to be assisted in order to reach my vehicle. Honestly, I cried the whole way home. Once I returned home and in my depressed state, I took a bath and before getting out (which I can’t even do by myself) in a complete fog of desperation, and in a moment that I fail to recall exactly what thoughts were going through my head, I took a bottle of muscle relaxers. I cannot remember the three days following that night-time bath.

I woke-up in a respiratory ICU room with a tube down my throat, a feeding line up my nose, a central line stitched in my neck multiple IV’s inserted in my arms and my arms tied to the bed (so when and if I woke up I wouldn’t pull everything out). 

respiratory ICU

When I awoke, I begged my nurse by mouthing the words, to let me go home. My nurse stifled a laugh and said “Oh honey, you’re not going home for a long time.”  Even that day, I remember very vaguely. I recall nurses, doctors coming in and out of my room. I remember loved ones coming to visit but the memory of it all is very hazy. One of my favorite memories is my husband Jeff holding the cell phone up to my ear while it played the Avril Lavine song “Keep Holding On”.

By the fourth night, I was awake and talking with Jeff in below whisper tones because the intubation tube (which had been inserted and removed 3 times at this point and had been removed for the final time only minutes before) had left me without a voice. He was continually asking me if I knew how long I had been there and if I remembered how I got there. I do remember my older sister walking into my room earlier that day before and being surprised because she lives in Portland, Oregon and I wasn’t expecting her.  I remember Jeff was asking me to squeeze his hands and show him movement in different areas of my body. Everybody was trying to make sure I could follow the simplest of commands. Jeff then informed me that I had been there for 4-days and that he had carried me into the ER with serious concerns. He had found me sitting by the stairs after I had removed myself from the bath and dressed myself – none of which I remember doing. I had asked him for help in getting down the stairs and was complaining that my stomach hurt and that I wanted to go to bed. He helped me downstairs but I wasn’t using my legs at all. My paramedic, emergency trained husband, quickly asked me if I had taken some pills. I wouldn’t answer him, but instead continually complained about stomach pains and fatigue. He laid me down on the bed and looked in my eyes only to find them glossy and glazed. He immediately scooped me up and carried me to the car while informing my parents that he was taking me to the emergency room. 10 minutes after arriving at the hospital I stopped breathing. That night my husband truly saved my life.

IMC ER

I want to make it very clear that I have never before seriously contemplated suicide, nor do I remember even thinking earlier that evening in my distraught state that I was going to go home and just end it all.

Let me tell you however, some of the thoughts that have been going through my head the past several months. I’ve been thinking that it would be better if my husband found a new wife – one that could actually do the things that I used to be able to do. One that could play tennis with him, go running with him and take care of his daughter better than I could and have more children with him.

I have constantly fought this battle with MS, but after having a child, my disease has taken on a whole new meaning. I have battled with the frustration of not being able to fully take care of myself and my husband, but now I had a child that depended on me in ways that I couldn’t deliver. 

Like I said I believe in being forthcoming with the truth and this is why I wanted to share my story. I am not going to lie what I did was stupid to say the least. As I look back I see how many people I hurt and regret causing that pain to my loved ones. 

This experience has made me realize although MS SUCKS! and I don't have the quality of life I imagined for my self that this is a test for me. This is just something that I have to go through to grow. 

Dude life is hard no matter the circumstance. I know people will judge me and think I was trying to "take to easy way out", that I was selfish or that I am a coward. And I would agree with them, but you will never understand until you are put in that blur of emotion and you just can't see the light at the end of the tunnel.

I know this subject is a little touchy and that I might look crazy, but I wanted to share to let people know that have even thought of this that they are not alone. It is estimated that there are at least 4.5 million survivors in this country. (AAS) and that over 750,000 in the US alone have admitted to thinking/attempting. 

bad news...yet good

As most of you know Jeff and I moved to Richfield (tiny town in the middle of nowhere) for a job transfer for Jeff. Believe it or not Gunnison (an even smaller city about 30min away from Richfield) has a SWAT team. Jeff is an officer on that team (you gotta get your start somewhere right?) Well as we tried to get settled in to this new life something disrupted us. Can you guess what it is? Yup, good MS decided to show it ugly face once again. 

While being pregnant I felt AMAZING, I mean MS did not even exist to me. My doctor did warn me that I could relapse 2-3 months after giving birth. I felt so good at the time I thought that it would never happen to me. Boy was I wrong!

 I spent 3 days in the hospital receiving treatment. Soon I was back on my monthly treatment Tysabri. but it turns out its going to be a long road before I feel "normal" again.

Due to my health conditions Jeff spoke to his Sergeant and he is now being relocated to the Draper SWAT team. So that I can be closer to medical treatment and to family members for help.

So the bad news... MS has returned with vengeance. Yet the good news... we are moving back to SLC!

Myths and Misconceptions

I wanted to share this post by the MultipleSclerosis.net. I thought this was great information to share for those who don't understand this complex disease.

1. "THERE ARE NO EFFECTIVE TREATMENTS FOR MS.
      although there is no cure for MS. there are effective treatments to battle the disease. I am currently  on A TON of oral medication that I take morning and night and then my main medication is Tysabri. Once a month I go to LDS hospital for a 2 hour infusion of the drug.

my daily dose of oral meds

2"YOU SHOULDN'T HAVE CHILDREN IF YOU HAVE MS."

     Research has shown that people with MS have healthy children and function well as parents and that children of parent with MS are happy and well adjusted. Pregnancy and childbirth do not make MS worse. 

while being pregnant I have never felt so dang good! No I never got sick, and never had to take any of my medication and felt that I walked better than ever.

the best day of my life. My great feeling of pregnancy health left when Sawyer was about 3 months old

3. "EVERYONE WITH MS ENDS UP IN A WHEELCHAIR"

      Although 7 out of 10 people with MS only have a mild-to-moderate disability and remain ambulatory. At some point they may require a walking aid. Such as a cane to help with balance, but the idea that everyone with MS is destined to be wheelchair-bound is false. I on the other hand seem to work backwards in a way. When I was released from the hospital after being diagnosed I was in a wheelchair and then graduated to a walker and then to a cane and now to nothing at all.

4."HAVING AN EXACERBATION MEANS THAT YOUR MEDICATION IS NO LONGER WORKING"

     None of today's disease-modifying treatment are 100% effective. Most will experience fewer exacerbations which may not be as severe, but relapses will still happen.

I did have a huge relapse when Sawyer was about 3 months old. I am now back on all of my medication and will get my first infusion of Tysabri this month. Because this relapsed was pretty bad my doctor sent me to the hospital for 3 days of steroid treatments.

5."MS IS A TERMINAL DISEASE"

     The fact is that the lifetime of a person with MS is just about as long as the lifespan of a person without the disease. Most people with MS die from the same health conditions that are the most common causes of death in people without MS.

I haven't been "posting" anything about our little lady's condition because honestly I was a bit embarrassed. I was afraid that people would think that because of my MS I may have dropped her or something. That is not the case!

On the Day Sawyer was born, right away Jeff noticed there was something different about her left foot. After having a few different doctors look at it we took her to an orthopedic specialist at Primary Children's Hospital. At just a few days old we got the news that our little lady had a clubbed foot. 

before seeing the specialist the doctors were unsure if she would even need treatment and were hopeful that baby girl would grow out of it

Right when the orthopedic specialist saw her foot she began to put Sawyers first cast on. This was such a hard thing to go through even though it was something as silly as a cast, but in that moment I realized just how much I loved her and that if I could I would switch places with her in a heart beat.

#1

We would find out that she would be needing 5 different cast over the next 5 weeks

#2

#3

We got to see her foot for the first time since getting her first cast. We were so pleased to see just how much process she had made!

#4

#5

Before getting her fifth cast on they had to cut her achilles tendon to fully "straighten" her foot out. We were not allowed in the room while they did the procedure. From what I heared she handled it very well...that night was a different story as the numbness wore off she started to feel the pain.

Today she got her final cast off! We were so excited for her to be "free" from the cast but we were soon to find out that her foot is so tender that the specialty shoes can cause a lot of pain for her.

it's been a long day for all of us and can only hope and pray that Sawyer will be able to adjust. 

She is so lucky to have her daddy to calm her down and that she is able to fall asleep while dealing with this change that she can't understand.

Sawyer will be wearing the brace for the next 3 months for 23 hours a day. After the 3 months she will then wear the brace every night until she is 3 years old.

We are so happy (yet sad) that we are able to get this taken care of at such a young age. The good news is that this will not stop her from crawling and walking when the time comes. And she will not even remember this ordeal when she gets older!

We are so proud of her and she has been an example of strength to us in so many ways.

Baby Girl...

and baby girl is here!! Yes it is true what people say about having a baby, this is the most profound perfect love that I have ever felt.

16 hours of labor is just so fun

Jeff was so excited to meet his little girl

Jeff got to deliver this baby girl!

baby girl came out a purple and blue due to the cord being around her neck

Jeff got her to "pink up" and she was then ready to meet her momma

we are so in love with our Sawyer LaRue she has brought so much joy into our lives and we are excited to see what the future holds for us! 

something to live by...

I love this story so much, I just had to share it. I find so much truth in it. 

There were once two prisoners who shared a cell.

They were both serving long sentences and were unlikely to ever be released.

Every morning, the warden would check on their cell and he was always amazed by what he saw.

One of the prisoners, Bob, was perpetually miserable and dragged himself to his feet.

The other, Ricky, always had a smile on his face in the morning and he jumped out of bed with enthusiasm.

This puzzled the staff and many of the other prisoners for many months as they could understand why Bob was so unhappy, but not why Ricky was so positive about life.

One day, the local priest was visiting the prison and he too noticed the difference in attitude between the two men.

He asked Bob about his demeanour and he promptly responded, “How would you feel if you were trapped in this place with no chance of release?”

The priest thought that this was a reasonable response, so he went to Ricky to ask him about how he maintained his positive attitude.

Ricky responded, “You’re a priest, right?”

“Yes, I am.”

“And that means you have some sort of confidentiality thing that means you can’t tell anyone anything that I tell you.”

“Yes, that’s right.”

“Well,” began Ricky, pulling his chair closer to the clergyman, “I’ve been planning an escape ever since I got here.  I haven’t got it all worked out yet and it may take me a long time to accomplish, but every time I start to feel sorry for myself and my situation, I remember that I can choose to accept my fate or do something about it.  Everyone here seems to just accept their fate, but I refuse to.  I understand that I may seem crazy and I may never be able to achieve my goal of getting out, but while I have breath, I have hope and while I have hope, there’s always something that I can do to help make my situation better.”

The priest smiled and looked at the inmate with new respect.

And he went home with the understanding that many of the people he met on the outside were more trapped than Ricky.

I wrote this story as a reminder that no matter what your situation is, you have a choice.

If you don’t like how you’re living, you can feel miserable or you can do something about it.

You have a choice.

You have hope.

You can do it.