A new challenge...

One of my biggest frustrations so far has been the numbness I have in my left hand.  You know when you sleep on your arm wrong and you wake up and your hand is kind of numb?  Usually you can just shake it and the feeling comes back, but imagine that it stays like that all the time.  That’s how my left hand and half way up my arm feels all day, every day.  It's most certainly not a fun sensation, believe me. However, the bigger frustration comes not from the sensation itself, but from the strain it puts on my piano playing.  I can tell a definite difference when trying to play with my left hand… one that is probably not noticeable if I’m playing something simple like hymns, but one that I can unquestionably feel when I’m trying to do runs in the more difficult pieces I like to try and learn.  I guess I can’t feel the keys as well and my fingers feel like they are stumbling over themselves.

When it first happened earlier last year, I was completely devastated to the point where I didn’t play the piano for several weeks.  If you know me you know I usually play pretty much every day for at least an hour, so this had a significant impact on my mood and my emotional well-being.  However, after a few weeks I realized that I wasn’t doing myself any good by just giving up.  I remember sitting down that first time after my little “break” and fumbling through one of my favorite pieces and thinking, “this is bull crap. I have practiced way too much to have to deal with this now.”  But the more I played I found I was able to make a couple of adjustments that helped and in the end I just resigned myself to having to practice more.  One of the things that I found that helps is watching my left hand a little more.  I’m not used to looking down at my hands, especially not the left hand… but I found that when I looked at the keys my fingers would find them a little easier and not stumble quite as much.

At the end of the day I am thankful that it’s my left hand and not my right so far.  The left always has the easier parts to play, so it certainly could be worse.  At this point I’m at peace with the fact that it may take me longer to learn pieces than it might have two years ago.  I’m still a little self-conscious about it even to the point where I tend to practice more while no-one is home when I’m learning a new piece.

This past Christmas I was tickled that I got music as gifts from three different people.  (I have a hunch they all think I needed the encouragement to practice.)  My hubby picked me up one of the Piano Guys books, Dee got me the “Pirates of The Caribbean At Worlds End” piano book and my mom bought me a Marshall McDonald hymn arrangement book as well as HER favorite version of my favorite piece to play on the piano, the Pirates Of The Caribbean theme song.  However, her favorite version is MUUUUUUUCHHHHHHH harder than the version I currently play.  

I have to say that when I first saw this piece of music and sat down for the first run through I felt like I was a 5-year-old playing the piano for the very first time.  I literally thought… "I am never, ever going to be able to play this.  What was this woman thinking???".  However, 15+ hours of practice later I am beginning to think it may be a possibility… maybe for next Christmas... at half speed... if I practice every day till then, ha ha. :)

Honestly, it may never sound amazing, but I am having a LOT of fun trying to learn it and it's giving me a good challenge to focus on.  I feel like my life is pretty much all about that right now... meeting different challenges... and either I can meet them head on or I can give up.  For right now, while I still can, I choose to meet them.  I'll keep you updated on how this one goes!

This is me...

I have been seriously obsessed with "The Greatest Showman" since it came out.  I've seen it three times already in the theater and it's literally the only music I currently listen to.  I subscribe to Amazon music so that I can listen to it in the car, at work, on my echo or any of our five dots around the house. :)  (Yep, I'm listening to it right now!)  The music and the messages in the movie are so inspiring to me.

My favorite song, (although it is SOOOOOO hard to even say that because I love them all), is "This Is Me."  I was telling Dee last night that it pounds at my heart in a way that makes me feel like it's my own personal anthem!!  She laughed at me and told me I was not an ugly outcast that people make constant fun of.  OK, I'm definitely not inferring that I have it like those sweet circus performers, but I do have my own "broken parts" and "scars".  Don't we all in one way or another?

MS can make me doubt my worth sometimes.  It fires bullets at me, tries to break me down to dust, can make me want to hide away and sometimes even makes me feel ashamed or unlovable.  I have my days that I feel bruised, but I can also be brave!  The song literally inspires me to believe that I can drown this out, keep marching on, burst through barricades and reach for the sun... When I hear "we are warriors", I think of every person out there fighting this stupid disease.  I AM a warrior and I don't need to make apologies or be afraid to be seen for who I am.  I am still glorious.  I am who I'm meant to be.  This.Is.Me.

See?  Totally my own personal anthem.  Now I just need to learn that killer dance routine. ;)

Finding balance...

MS LifeLines has been one of the most wonderful blessings for me.  It is an educational support service for people living with MS and their families.  The group is sponsored by EMD Serono who are the manufacturers of the medication I am on, Rebif, and the amount of resources and support they have provided for me have been incredibly invaluable.

Not only do they send the most lovely nurse out to my home monthly to help educate me and check on how I'm doing, but pretty much every month they do a “C.H.A.T,” ( that stands for Connecting, Helping, Aspiring, Teaching about MS), which is an educational program they hold at a very nice restaurant where Mike and I can go to have an amazing lunch, listen to a program that teaches us how to deal with different aspects of MS, participate in a discussion with an MS Lifelines Nurse and get to know other people in the area with MS.

This month the C.H.A.T. was at the Harvest Restaurant in Thanksgiving Point and it was called “Finding your balance with MS – Tips for finding your balance and creating your new normal when living with relapsing MS.”  Brandee, the sweet, amazing nurse that visits me each month, was the one presenting.  She always does a fantastic job.    

The first thing she did was to have us all introduce ourselves with our partners and share when we were diagnosed.  So far at all of these chats, I have been the one most recently diagnosed and I can’t tell you what a support and inspiration it has been to hear other people’s stories and hear how they cope and what things they are doing to help themselves.  The first one I went to was soooooo hard for me, but I absolutely love going to them now and hope one day I can provide the kind of support I have received from all the beautiful people there for other people who are newly diagnosed.

For the presentation this month Brandee covered four areas:  How to manage change, a symptom focus of walking difficulties, the importance of positive thinking and healthy habits. 

For the discussion on managing change, she talked about keeping an open mind and being flexible.  She asked us to share some of the changes we had made since our diagnosis.  I learned very quickly after my diagnosis that making small adjustments as needed is the best way to cope.  I have changed my eating habits so that during the week I eat super healthy… lots of chicken, beans, fruit & veggies, yogurt and protein shakes.  Then on the weekend I let myself have a couple of treats.  I have also incorporated riding the bike for a minimum of 30 minutes a day.  I have felt AMAZING since making those changes (and dropped 17 pounds.)  I also spend some time reading each day to clear my head.  I work 6:30am to around 3pm every day and then come home and lay down for about 30 minutes because if I do that I know I’ll be better for the evening for my family.  These are just little examples of changes that you make to cope better.

I have not had many walking difficulties other than some slight balance issues, (like if I look up and over too quickly), and heavy legs on very few occasions.  However, I still listened closely in case it is an issue I have later in life.  She talked about avoiding high heels and watching out for rugs and clutter in the home as well as letting our doctor know if we start having any new walking difficulties. I actually hold Mike’s hand everywhere we go not only because I love him so much but because it also helps keep me in balance and stops me from tripping over things, ha ha.  

I have always been very aware of the importance of positive thinking.  I liked that Brandee reminded us that MS is a part of us, but does not DEFINE us.  She also talked about trying to find the humor in situations, and this is something Mike and I do a LOT.  I always make jokes about it for my family so they can know it’s ok to talk lightly about it.  She also talked about depression and making sure we talked to someone… that counselling was an important part of dealing with MS.  Overall I think I do a pretty good job with trying to be positive.  Every day I literally tell myself I have a choice, roll over and give up, or get up and fight to have a good day.  I always choose to get up and do all I can to have a wonderful life and I make that choice for my family. 

Lastly, we discussed healthy habits.  I feel like Mike and I have really made some positive changes in this area this year and we are feeling so much better for it.  It was funny that they specifically mentioned Tai Chi in the presentation because Mike is working on getting certified to teach Tai Chi.  He practices every day and he is signed up for a seminar in June where he will receive his certification to teach it to the elderly people he works with in the nursing facilities.  However, he has said for the past few months that the main reason he wants to learn it is to do it with me to improve my balance, so it made me giggle when we read that and he looked at me with a “see, I told you” face.

It was such a wonderful couple of hours.  I truly love these events and I love that they open them to ANYONE with MS whether they are on Rebif or not and they are completely FREE.  You can find more details at https://www.mslifelines.com/ms-lifelines-live-events.  They apparently have events all over the country!  That kind of support system has made SUCH a difference to me.

A good month...

I'm not a big "New Years Resolution" person, but this year I wanted to make some changes in my life to help make me physically AND spiritually stronger so I started by setting two challenges for myself in January.  One was to ride 7 miles a day on the recumbent bike I treated myself to in December, and the other was to join my hubby and the young men in our ward in reading the entire Book of Mormon in 30 days.  Both of these were significant time commitments, but I felt like they were worthwhile "goals" and that both would help me feel "better" in different ways.

I only missed riding the bike two days total during the entire month, (other than Sundays which I gave myself weekly as my "day of rest"), and those were two days that I was sincerely NOT feeling well at all.  January 1st I was only riding the bike on level 1 and I will admit freely that it pained me to finish the 7 miles, but by the end of the month I was easily able to complete my miles on level 3 in less than 30 minutes!  I also started lifting 5lb weights for about 15 minutes three times a week and doing a plank on those days too.  My first plank day I made it about 15 seconds before collapsing, haha.  It was terrible!  But by the end of the month I had graduated to 8lb weights and could hold my plank for over a minute.  I can honestly say that after just one month, I feel physically stronger than I have in forever and it feels wonderful.

Reading the Book of Mormon took much more time daily than I thought it would initially.  I'm usually a pretty fast reader, but it took me about 45 minutes a day to get through the reading.  I have never read the Book of Mormon this quickly, (and I don't know that I will do it again any time soon), but reading it like a novel was a brilliant experience that I would recommend doing at least once in your life.  Reading it this way brought the characters to life in a whole new way for me and helped me understand and love the relationships in the book better.  

This week I actually finished reading the Book of Mormon and I just had to share and document what a tremendous blessing both of these things have been in my life this month.  I honestly have not felt this "well" physically, spiritually AND mentally in well over two years.  

Just because the month is now over, I'm not giving up on these goals.  The chart is already up on the refrigerator for February.  I'm doing the Book of Mormon in 90 days next which will seem like a piece of cake after the 30 days, but will give me more time to ponder.  It will also be fun to see where I am physically at the end of February.  One thing I learned from my two days of missing the bike is that it's absolutely OK if you have a bad day or two.  Just don't give up!  Get up and get going again as soon as you can.  I'll take two bad days over thirty any time.   I may never be able to "master the rest of my life."  MS is unpredictable and it's hard to know what will happen to my body over the next 30 years, but I can master each day and be ok with that.  

Again, I'm grateful for my hubby who exercises and reads along side me every day.  Having someone to share accomplishing these goals with helps motivate me big time.  Here's hoping for a good February!