Tuesday

Guest Blog - Dreams: My Journey with Multiple Sclerosis


Dreams: My Journey with Multiple Sclerosis
By Kristie Salerno Kent
Kristie Salerno Kent, a multiple sclerosis patient advocate, singer and songwriter, award-winning filmmaker and mother of two has just released her first book, “Dreams: My Journey with Multiple Sclerosis.” A free download is available at www.DreamsTheEbook.com. Kristie is a paid spokesperson for Acorda Therapeutics®, Inc.
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At seven years old I absolutely knew what I wanted to do with my life: become a performer and maybe head for Broadway! A basement renovation in our home provided enough open space for my first stage, and I loved performing for my family. I’d sing at the top of my lungs and dance my heart out.

When I was 18 I entered Syracuse University’s musical theatre program with my dream of Broadway still in sight. But when I took classes in ballet and modern dance my coordination was not as strong and precise as it needed to be, and I could not figure out why. At times my head felt clouded, almost like it was filled with cotton. Even though agencies in New York were giving me a chance to audition, I was physically unable to perform.

I eventually put my Broadway dreams on hold and moved to Atlanta with my high school sweetheart, Michael. Soon after he proposed, and we started to plan for our wedding and our life together as a married couple. That’s when I noticed that my legs were becoming numb and I was experiencing a pins-and-needles sensation in my feet. I had heard people talk about getting cold feet before marriage, but they didn’t mean literally, did they? I went to see the doctor and an MRI test confirmed I was living with multiple sclerosis (MS). I was overwhelmed with feelings of fear, panic and denial. How was I going to get through this?

In spite of my diagnosis, I kept trying to pretend everything was “normal.” I was such a good actress that even Michael, the person closest to me, rarely noticed my efforts to hide problems with my walking and coordination. I didn’t talk to anyone about my symptoms because they were too difficult to explain. But with this news I thought my dreams of performing were over forever. A few years later, I had an unexpected opportunity to perform with a local producer/songwriter. The lyrics talked about doing what makes you happy, and following your dreams no matter how many challenges you face. I fought my fears and sang like I had nothing to lose, and the feeling was amazing. It was the push I needed to re-ignite my passion for music. I went on to record my first album, “Believe.” I also wrote and directed a short film, “The Show Must Go On,” to help others understand what it is like to live with MS.

I found that when my heart was opened once again by my love for music, it freed my mind as well. I was less afraid – and more focused on what I could do. I realized that denial was holding me back and decided to educate myself about MS. I saw how much I could still accomplish.Instead of avoiding my doctor, I started to listen to him about treatment options that could help me protect my health. I also got more involved with MS organizations. Most importantly, I found the confidence to conquer my biggest dream of all: becoming a mom. Michael and I now have a son, Kingston, and a daughter, Giabella.

I wrote “Dreams: My Journey with Multiple Sclerosis” to encourage people living with this disease to use their passion to overcome denial and help others understand the impact of MS. I hope that this story will help others on their journey with MS. Download a free copy today for you or someone you know who needs help getting started on their dreams at www.DreamsTheEbook.com.





Monday

Orange is the new Black

Ever feel like a prisoner to your MS?

Then you can probably relate to the Netflix's sensational hit, Orange is the New Black. A smart woman made a bad choice and she's paying the price in prison. While MS is not caused my one bad choice, its easy to feel prisoner to ones symptoms when bad choices are made.

Just the other day a dear friend was over. We were having dinner and decided on nachos. Then we expanded to queso. Wow. Tasty as the dickens.

Well. I couldn't stop. I kept eating these flaxseed type chips with this amazing concoction of ground beef, pinto beans, herbs, salsa and cheese. The operative word here is the cheese.

And before long the entire bowl of fat, salt, dairy and calories were down my throat and into my belly. While it all tasted great at the moment, the next day was filled with paying the price. The sodium and fat sent my MS symptoms skyrocketing. I felt like a ton of sludge hit my lower gut and was taking everything down with it. Or in fact not letting anything down with it.

Time for help! Time for some homemade Alkalyzing juice of dandelion greens, kale, apples, cucumbers and ginger.

So, Take That MS! And here's to a day of cleansing, sporting some orange and getting things done!

Click here fore more orange options.

 

Sunday

Wildlife, MS, and the little things in life.

This week has been blessed with several wildlife sightings in my own 'hood. There's something about seeing a deer, free and wild, relaxed and grazing. Unaware.

This little doe popped out as we strolled in Descanso Gardens, a local favorite.

After being still for quite some time I needed to move and knew she'd spook a bit. What a beauty. These deer are protected in the gardens otherwise they would be no where around. It's deer season in many areas.

And then, imagine sitting in your office and looking out your window and seeing a couple of bobcat cubs curious upon the deck. Not sure where mom was...

After a bit they strolled to another part of the yard and started hunting...we have many a rodent, rabbit, and bird in the yard.

While this family has lived in the area for awhile it's not often they're visible at 11am on our deck. What a treat.

Being close to the mountains has its benefits for sure. There's a local bear but I have yet to see him. And it's that time of year...Pop go the spiders!

Check out Charlotte starting to make her web.

Unfortunately, Charlotte doesn't know much about real estate and location, location, location! This web attempt was ended in hopes she would fine a more suitable place to weave.

Well, Charlotte is quite the weaver she is a slow learner. This beautiful web is directly in front of our back door. Another relocation will be needed.

But intrigued to see it at night, we protected the web until the moon came out and Charlotte returned. And honestly I felt bad that I would have to destroy this work of art.

Well, Charlotte came out in all her beauty...with the moon. Enjoy the night Charlotte! For tomorrow change will come.

Being aware. Aware of your surroundings and your self. That is what is needed to manage multiple sclerosis. Awareness. Sensitivity. Attention to detail.

What are the little things in your life that you are aware of?

 

Friday

New neurologist, cooler temps, Ann Romney....let's do this!

Just met with me new neurologist. Wow! He's awesome. Totally thorough. A doctor's doctor. So glad I found him. Going back in a month after complete blood work and one more MRI.

These cooler temperatures are great for MS. I met Ann Romney last night at a book signing for her new cookbook. I gave her a card for GirlwithMs. We shall see if she checks us out.

A morning chat...

And a morning free flow wiggle session. Time to get moving!

Psyched to attack the day today.

Cooler temps mean more walks. Love my neighborhood!

And the wildlife is out and about in The backyard. With MS it's so important to appreciate all the little things in life.

Legs on fire a bit but I'm ready to say "Take That MS"!

 

MS, boundaries and ability to "take a nap"

Well, I am home safe and sound from my first MSontheRoad adventure. And, the regeneration I feel is electrifying. Not only did I have a grand adventure in Oregon involving horses, fly fishing and great friends, but I was also able to attend a session at Oregon State University's Multiple Sclerosis Exercise Program. Met some great folks. More on that click here.

But I am home and reality hit. Things to do, people to see. Today was the monthly meeting of our local chapter of the Daughters of the American Revolution (DAR). Tonight is our local high school's 50 year all-class reunion and many old friends will be there. But I am wiped out. My legs feel like rubber ducks.

In addition the temperatures are predicted to rise to 90F tomorrow and Sunday. So not MS friendly. And we have our annual food and wine festival on Sunday to raise money for our local educational foundation. As both a board member and ambassador with our local Chamber, I will be both volunteering and attending. Always a fun event but 90F?

With all of this in mind I have decided not to attend our local reunion and homecoming festivities. It's just too much energy involved. And I don't feel like I have any reserves. Or not much. I will be attending dinner with some good friends who just returned from safari in South Africa. We're having dinner at one of my favorite places, Casa Cordoba in Montrose. Salivating as I write. In fact. Well. Never mind. I can wait. I'm feeling a little peckish.

Boundaries. For me these can be very hard to define. I'm a social bug by nature. I don't like to say no. I don't want to miss out. But it's that ability to turn off. To take a nap. To quiet oneself and recharge that is so essential for managing this disease.

Often I wonder If I had the ability to "take a nap" to begin with, would I have acquired MS?

Off to nap and ponder...

 

Thursday

Oregon State University MS exercise program

Some towns just have great MS programs! Yesterday I visited the OSU MS exercise program in Corvallis, Oregon. It's held at the university and has been going since 1995. Twice a week, folks with MS can come and get free physical therapy advice and help.

Most of those attending with MS were in the 50 years older group. Maybe because of the schedule.

About 15 volunteers with MS come to exercise while about 15 students volunteer to help them. Most of the students are physical therapy students. This happens twice a week so about 30 folks total each session.

I met several folks with Ms who have been attending since the beginning of the program. Here is a pic of me and John. Beating his MS since 1995.

This is a great example of a community saying #takethatMS!

 

Wednesday

Horses, Sunshine and MS

What a day! First a ride through the forest on my old friend, Pepper the horse. Been a couple of years since I've seen her. Rode up to the clear cut and beyond.

The rain was coming down hard. Hadn't really stopped in several days. But as soon as we saddled up and headed out the sun was al ours.

Kay riding Patrone for his first time out on the trails. Second time on him. Several of these horses got delayed in some training and are just picking it back up. Patrone leaves for his new home next month. Kay rides and competes quite successfully in barrel racing.

Heading out...

Heading through the forest to get up to the clear cut. This is a working timber ranch and harvests are managed along with salmon and fish restoration. These guys are excellent land stewards.

Love it at top. So peaceful.

Wearing the gopro, got some nice footage.

Sun came out and we rode to where we could see Yaquina river...off in the distance. We could ride this road all the way to Toledo but we turned around after awhile.

 

We headed back, keeping an eye out for wildlife. Bears, elk, cougars, all of whom roam this countryside.

We went and checked on the bulls.

What a ride! The cattle have all come down now that the sun is out. Calves by their sides. Everything at peace.

Well, not much like a god ride to send your MS into remission for the day! The weather stayed a beautiful 60ish degrees and I decided it was time to throw a fly in the water. Now or never since I leave in the morning.

 

Tuesday

Bathes, chanterelles and glorious life

I love a good bath. Can make many of my MS symptoms disappear. But tonight is all about the chanterelle.

Life is good. Throw in some grass fed beef, homemade salad. All good. Surrounded by love.

Xo. Cc