MS & I

Tuesday, September 9, 2014

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.

Saturday, April 26, 2014

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.


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.