My life is like a song...sometimes a happy one, sometimes a sad one; but always with so many stories to tell. I am simply Stephanie, but someone who has a story....my ballad.

Tuesday, January 31, 2012

Oh Relapse.....I have NOT missed you.  Why did you decide to show up now?  You have been a constant pain in the patooty and I really am beginning to despise you.  MS has a way of making me crazy from time to time.  This is one of them.  I woke up a few months ago experiencing a "zing" sensation in my head.  Similar to hitting your funny bone, but instead I get a sudden jolt of vibration and an electrical shock sensation followed by overwhelming immediate dizziness and all the while a constant headache accompanies me as my new companion. 

Funny enough, I seem to think I am invincible.  I ignore the head issues, the fatigue and the leg cramps that signify I am doing too much. After all...I  had company for a few weeks in December, I started a new job; in addition to teaching water aerobics.  I had to say good-bye to my son who was deployed and now lives in Japan.....half way around the world.   Now I am helping another son as his friend fights the last few weeks battling cancer.

 Life is crazy, way too busy and I am honestly just too busy to be dealing with you too Mr. Relapse!!

With that said, Relapse didn't care.  He showed up anyhow.  One day I wake up dizzy, it gets worse.  I finally see the Neurologist.  The doctor tells me that he is worried....that the lesions in my spine are a huge concern. Not only did I find out that my lesion on C2 is in a very compromising position; but that the one located at C4-5 is also a endangering my ability to continue to be mobile.  Hmmmm....reality check!!   So, the doctor immediately puts me on steroids.  An IV double dose which take up the remainder of the evening.  The plan was to rush me to have an MRI, some blood work and hopefully get me started on the drug Tysabri.  WOW....I only wanted to get my annual check up!

OK, so now I am full of steroids.  Nothing has improved.  My head is giving me those lovely vibrating sensations almost constantly.  If they were labor pains, they'd be so close I'd be giving birth.  So, now I wait....wait for the results of the MRI.  The big fated answer of whether or not I am going to be labeled as Progressive with my MS and not just relapsing-remitting.

 So, for now I decide I will keep fighting no matter what the outcome is.  If I have to fight, I fight harder.  Life is not just about what happens to you, it is about how you chose to handle the things you are given. The outcome of those choices becomes your "life".  Hopefully the life and legacy that one day you will be proud to look back on. 

In the meantime, I hope you will join me in my boycott of MS and of all the many diseases and afflictions that affect us all.  I am sick and tired of trying to stay positive.  HA HA.  :) 
(That is why chocolate was invented I think..)

Tuesday, October 25, 2011

September was full of birthday celebrations, my daughters, followed by my own birthday and then 3 of my grandchildren; before I knew it the month just flew by.

Then it was October.  The month that brings mixed emotions.  I had 2 sons born in the month of October.  My oldest son would have been 32 this month. His birthday was on October 8th.  While it wasn't as hard emotionally as his death date, it still makes for a day full of emotion as I reflected on the life he had, and should still be having.

I decided on the first birthday following his death; that a tradition of decorating his grave on his birthday (for fall and the upcoming Halloween holiday) would become my way of keeping him and his memory alive on the day that I gave him birth.  He loved Halloween; and so I wanted it to be a day of good memories; not of the ones missing him.

While nothing can ease the pain of losing a child; the memories of what time I had with my son has been a priceless gift in the end.  And, now as we continue to move forward in the month, we are celebrating a daughter in law's special day and another son's birthday at the end of the month.  With this I realize that life in perspective, is time building memories.  One at a time.  Whether you are building  your own memories; or an intricate part of building someone else's, we are all a gift to each other.  The little "pieces" of you; that you share with those that you meet, those you love, or even those that you are unaware of when crossing paths. It is those memories and actions that will weave the web of who we are.  And the legacy that we become; and ultimately leave behind.

Stay true to yourself as Shakespere once said, and enjoy the simplicity of the moment. You never know how important that moment will be to yourself, or someone else one day.  Live, Love and Cherish Life.

Wednesday, August 17, 2011

WOW, what a great weekend it was.  We had the opportunity to participate in the MS MUD Run.  It was really something cool, not only because it raised money for Multiple Sclerosis, but it was fun and made people aware of what Multiple Sclerosis actually is.  This event was held at the Miller Motor Sports Park.  Joe, my husband and our new neighbors ran the mud race; a 10K with several obstacles along the 6mile course.  They definitely got MUDDY! There were log walks, (over mud) and rope swings, mine fields that they had to crawl under fences, tunnels, cargo nets, over and under's and some surprise mud pits. 


I volunteered to help with the racers, and had a great time watching, helping as well as getting to know some people who had MS as well; and some new faces including Bob Harmon who helped sponsor the event.  He is one of the owner's of Harmon's Grocery Stores in Utah. 

What was so interesting to me was that the mud run was actually introduced as a way to familiarize MS to those people participating; and what it actually feels like to those of us who live with it.  The obstacle course was set up to represent the many challenges and obstacles those of us who have MS face daily.   The mud, was to represent the struggle it is for us to walk just like we often feel; something like walking in mud or wet cement. Our legs get heavy, weak and feel like they are weighed down, making it very difficult to move.  The race to the finish was to represent the push we have to move forward, to constantly overcome our challenges and to make it through another day, another week, another year etc.  I was very impressed with the analogy of the event. 

The next day my husband, son and myself went hiking again.  We hiked to a beautiful lake called Lake Mary.  It is located above the ski resorts; a hidden lake that was well worth the climb.  The elevation is about 9600 ft.  And other than the pesky mosquito's that were up there, the serene lake reflection of the surrounding scenery was spectacular.  I've included pictures of both to show how great the mud run turned out as well as the reward I got from trudging up the mountain side as difficult as it is.  MS is something I have....but MS definitely does NOT have me!  :)

Just getting there. I volunteered, my hubby ran it.

Getting ready for the shotgun start

On your mark, get set....GO!

And they were off.  The first wave of runners; which Joe ran in.

Coming in for the finish...a little dirty...

We did it...He ran, I helped; and it was all for MS. 

Thursday, August 11, 2011

As time goes by and we find we are always busy and life doesn't slow down  I realized that I  better take my own advice that I blogged about last time.  Enjoying the time and life we have.  So, with that I took a challenge that my husband presented to me; to try to hike to the peak of a mountain top.  "Yeah Right, Uh I have MS" I'm thinking...then I actually thought...."why not"?  

So the next weekend, we got up early and invited our son the avid hiker to join us as we attempted to climb to the top of Grandeur Peak.  I know it isn't MT. EVEREST or anything, but to me it was.  I was nervous to try it, but then I thought if I do this I can put that on my list of things that I thought I would never do and did! 

Six thirty in the morning we are rolling down the street to pick up our son.  We drive out to the Canyon and park a half mile away from the trail head parking because it isn't open yet to park.  With that little bit more added to my 'hike' I was even more concerned because by the time we made it to the actual trail head I was ready to call it a day.  Never less, we kept going.  I was like a little kid... "How much longer til we get there"?  And, my husband and son were very patient with me as I had to stop along the way to catch my breath.  Rest my legs and just take in some Kodak moments. 

I asked my son how long it  usually took him to scale this peak.  And, then the depressing answer came.  "Well, I usually do it in 1 1/2 to 2 hrs up and 1 hr down".  WHAT?  We weren't even half way and it had been almost 2 hrs.  I was really slowing him down obviously.  But, we kept going.  Eventually, we were at the base of the last climb.  One that you had to do on your hands and feet, mind you because of the rocky terrain.  We kept climbing and it was then I was determined to make it if I had to crawl the rest of the way. 

When we reached the peak, I must say the view was breathtaking.  We could see the whole SLC valley and farther.  We could see a close up of MT. OLYMPUS and a panoramic view of Park City Summit, the SLC Valley and the up close mountain ranges on the other side.  WOW.  We stayed there for about 40 minutes just enjoying the view and serenity, and I was thinking the descend would be a piece of cake compared.  HA.  Was I wrong.  I think it was about the same in effort actually.  I was hot, tired and very thirsty since we had just depleted our water as we didn't plan enough to bring and realized that too late.  So, we kept it up one step at a time.  Our son had to get to work, so he headed on ahead of us and had a ride come get him. We thought we'd be down before too long too, but NOPE.... it took over 2 1/2 hrs to go down.  We had spent almost 6 1/2 hrs hiking round trip to the top of this mountain.  The last 1 mile down  I lost use of my legs.  MS strikes again.  I luckily had some trekking poles that our son lent me or I would not have made it off that mountain.  The last mile I was walking on legs that I could not feel.  The feet were numb, the legs extremely heavy and uncooperative.  I was mad now.  I wanted to say I did this, and now my legs poop out?! 

But, I kept going, slowly; but going.  I used those poles to bear my weight like crutches and kept thinking that I am almost done....then another long trail around the bend...sigh.  We kept going and eventually Joe my husband left me close to the trail head to run down and get the car since now he could drive up to the parking lot.  I got down and when I saw the parking lot I literally slumped down and just sat on the asphalt and waited for my ride home.  I felt defeated, tired and weak.  But, guess what?   I DID IT!!  I actually climbed a mountain.  I have MS and I climbed a mountain and I didn't give up!  It was then I realized that even though it was extremely hard, and seemed impossible I did not give up and I tried it even though I deep down didn't think I'd make it.  And by trying I can now check off, "Climb a Mountain" off my bucket list. :)
The sunrise as we are driving to the canyon to begin the hike

Just getting started. My husband Joe, and our goofy son Cory (he can't take a pic w/o making a face!)

Up we go,  and I am finding out steep it really is getting

But, OH MY GOSH...the views!

Green, and serene

Getting further up and now you can see the tops of the adjacent MT

This is taken from the last break before the big climb to the top

Cory and Joe waiting on me....sigh

YES, almost there they told me~

WE MADE IT!  Can you believe how small the valley is?

Me (Stephanie) elated to make it all the way up and still be able to stand.

Oh yeah baby......I rock, I did it! I have MS and I did it!

Another view before we decide to go back down the way we came up...
YIKES

Hot, and tired.  Shed my over shirt even, but I was sure happy I had trek poles

Getting close to the trail head but moving OH SO SLOW.  MY legs were toast by now

Using the poles to move me literally. Thanks Cory for letting me borrow these.
I coudn't of done it without them.

Monday, July 18, 2011

I can't believe six weeks have passed since I dropped a few lines.  I wonder sometimes how time can pass so quickly when I have so much going on and it seems I don't have time enough to barely come up for air before the next event in my life. Yet, there are days that time seems like forever and you wish and long for the next hour, next day and sometimes the next minute.

Time however is something we don't seem to enjoy enough.  The time we spend doing the things we love, the things we sometimes hate and the things that we will never get the chance to do again.  Time is precious.  Time is a gift that we take for granted.

I have a 'bucket list' on the blog; a list of things and places that I hope to have time to accomplish and visit before I am either dead or can't do those things on that list anymore because of mobility etc.  AND...I think everyone needs a 'bucket list'.  Not so much to concentrate on impeding death one day, but to concentrate on LIFE and what opportunities are out there so YOU can truly experience life before it is too late.

My son passing away has certainly brought this lesson to the fore front and has taught me that life is too precious to waste, to delay and to compromise the things we want because of time, circumstances and or just being too tired.  GOI   Get Over It.  Life will continue on, whether we choose our destiny or not. The time we waste thinking about those things will go by regardless of if we actually do them or only wish we did.  So, the moral of my post today is.....Don't let time get away from you and dedicate some of your time to do something that you've always wanted to do.  It doesn't have to be exotic, expensive or even that cool.  It can be as simple as a picnic in the middle of a field enjoying the sunshine and all the dragonflies; something that I just did this weekend. 

I plan to elaborate some of my bucket list items on the next post.  The whats, whys and whens.

For now I challenge you to take a moment to enjoy life.  There are plenty of moments that can make lasting memories.  Make yours happen.   :)

Thursday, June 2, 2011

Two years ago today, my son Josh took his life.
  He was 29; soon to be 30. Josh was a good looking, happy, outgoing and a very charismatic person.  We really had no idea we would lose him to such a tragic ending.

Somehow circumstances got the best of him, and his emotions must have spiralled to a point that he felt the only way out was death.  While we often wonder just exactly what  drove him to this desperate act; we fear we may never know the truth of
that fateful day.  There are many unanswered questions, facts that don't seem right and circumstances that were completely out of the normal.  But, since only he has the answers; we chose to remember him for who he was and not dwell on the "whys".

Today I write about this, not to be graphic; but to share the reality of what suicide does to a family.  To friends.  To co-workers.  To those that were somehow a part of some one's life and now are only left with memories.

Josh chose to leave this world sitting in a ravine located in a lonely lava rock bed
in West Idaho Falls area.  It was raining that day, and he must have been in a very somber mood as he took his 12gage shot gun (not the typical weapon used in a suicide) and  drove his truck out to the chosen spot.  A spot that was both serene and beautiful yet at the same time so desolate and lonely; knowing he was about to end his life and forever change the lives of those close to him.   Please reach out to those that may be contemplating suicide or that have threatened it.  It may not be too late.  Our son never expressed his thoughts to us of self harm; but silently he was crying for help.  Stop to listen carefully to those around you who may also be doing the same.  If one life can be saved from suicide awareness then sharing our story of losing Josh isn't in vain.
  God Bless.


Those we love don't go away,
They walk beside us every day,
Unseen, unheard, but always near,
Still loved, still missed and very dear
.
- Anonymous



Wednesday, May 18, 2011

Last weekend, I received a very nice compliment.  It came from my mother. Yeah, I know...Mom's do that.  But this compliment meant a lot to me for a reason.

The compliment was that she wanted to submit me to be a  "Poster Child" for Multiple Sclerosis.   I just laughed, because I had only called her to let her know our plans so somebody would be aware of where we were in case something were to happen to us.  We were out riding our motorcycle and had planned a 6-7 hour ride that day and had stopped to grab a bite to eat.

But, she explained that she couldn't believe that I do all I do with MS; that I am always on the go and that I could help someone that was just told they have the disease by proving that MS doesn't have to debilitate you once you receive the diagnosis.   AHHHHH....wasn't that was so sweet?!

But the truth is, when I was diagnosed with MS in 2003 I thought life as I knew it was over.  I worried that I would be in a wheelchair within a year or so, and that I was going to be a burden to those around me for the rest of my life.  I cried and went through a terrible depression and struggled to come to grips with the pain that MS brings; not only physically but emotionally.  

Since that day (the day before my birthday that year) that I was told ...."You have MS".  I have tried to live my life as if I might be in a wheelchair in the near future, or that I might not be able to do the things I can do today.  In a nutshell, I decided that life is too short to sit around and wait for the day I am doomed, so I decided to take control of my MS; so it doesn't control me.

I have since been skydiving, white water rafting, zip-lining in a jungle and have handled snakes (that was to prove to myself I could).  I teach water aerobics (yes...even with MS).  I am always on the 'go'.  I am busy conquering my fears, overcoming my weaknesses and living my dreams that constitute the so-called "bucket list".  

Life has a way of keeping us on our toes.  If it isn't from the constant drama, (which is always in abundance in my life it seems) then it is from the constant change and need to stay on top of all the many things we obligate ourselves to do.  LIFE is just busy.  And, if we have a few spare minutes, we need to play, we need to relax or just stop to enjoy the moment.

The last few weeks have been crammed with projects we are doing in our home; some remodeling, moving rooms around and just trying to get re-organized, not to mention a whole bunch of emotional upsets we were given this past few weeks aka more drama!  In between that , we flew to California to help our son move and watch their 2 young boys while they put things away and set up house.  When we returned, we were welcomed back by more projects, yard work and a list of honey-do's.

BUT....guess what?  We chose to set aside some time and we rode our motorcycle.  WHY?   Because we can.  Because we may not be here tomorrow, but the projects will be and they can wait a day. 

There is nothing more exhilarating than taking time to enjoy what we have, what the world has to offer, and what God has created for us to explore.  Take time to enjoy, if only for a moment.  My moment was wonderful, and now as I sit here with a pile of papers to file, boxes of sewing equipment to put away, photos to frame so I can finish hanging the decor in my craft room; not to mention another batch of laundry that just finished drying I need to go fold, I choose to take another moment to write.  

The moment may be different from that of wind in my face while I watch the clouds as I sit on the back of the motorcycle touring the back roads.  But, it is my moment.  A moment just for me. 

Make a moment for yourself everyday.  There are too many times we don't and wish we did.  If it were not for my "moment's"  I would not be the person who my mother thinks should be the poster child.  I seize life now, more so because I have a son that lost it, and with MS I now have to fight for it.    LIFE IS GOOD.   Don't forget that when you are consumed by all the 'stuff'.  It is only stuff, and that is the moment when you need to stop....and take your moment. :)