The Cubs’ World Series Win Beyond the Game

Cubs Win! Cubs Win! Cubs Win the World Series! Unless you have been living under a rock that shouldn’t be news to you. And in case you are wondering, no, I haven’t lost my mind. Before anyone accuses me of jumping on the bandwagon, let me make one thing perfectly clear – I still bleed Cardinal Red! That has not and will not change.

This Cub team, however, is undeniably great! Are they the best of all time? I’m sure that will be debated and argued about, but the truth is we will never know. The reality is that argument doesn’t matter. They were the best this year and right now that’s all that matters.

Cubs Champs

It has truly been a pleasure watching the pure and raw emotion of some of my Cub friends this season and their resulting joy. Others, well, they will never quite get it. No matter how successful their team was this year they still couldn’t help themselves from being negative; whether it was when their team hit a rough patch or their inability to resist the temptation to needle other fans rather than enjoy in their own teams tremendous success. You know who you are… um, wait, no, you probably don’t because ignorant jack wagons are just that. The inability to change their attitudes and their resulting actions shouldn’t prevent any of us from learning the important lessons this joyful event provided.

The Cub’s victory delivered to their fans, as well as to our country, more than just a victory, more than just a world championship. This talented group of players provided us with a glimpse of what we can achieve when we come together and never quit. The team and their fans showed us what we can achieve if we fight together for one common goal. In what is a very contentious, troubling time in our country with the elections, police shootings, racial tensions and more, their victory comes at a moment when we need something positive to bring people together for a common goal. The resulting unity from their victory provides us with many lessons.

Optimism

For years, Cub fans have remained true and dedicated to their band of “lovable losers.” I know, doesn’t seem to fit anymore does it? This team, just like Jon Lester and Anthony Rizzo had done battling cancer not too many years ago, never quit. The Cubs fought and refused to give up even when, at moments, many of their fans may have assumed the goat was trying to get a ticket or that Bartman did and was lying in wait down the left field line. They proved that anything is achievable.

Faith

This team always believed. Without faith, we are nothing. You only need to look at World Series MVP, Ben Zobrist, to realize that. He is an example of what believing in God and having your priorities straight can do for you. He knows success is nothing if those priorities are out of whack. If your heart is in the wrong place, if your priorities are out of line, then any successes, any victories, just become hollow and void of any real meaning. We all have a God granted purpose and when we believe that and dedicate our daily actions to fulfill it anything is possible. It doesn’t matter what the naysayers believe or spew.

My friends Tom and Amanda who are huge fans!

My friends Tom and Amanda who are huge fans!

Respect

I was impressed by the Cub players and their manager. One of the first things many of them did after their victory was to congratulate the Indians and what fierce competitors they were. They knew that with one or two different moves the results could have been radically different. It takes a tremendous amount of self-knowledge and respect of your competition to acknowledge that.

Courage

The Cubs played their hearts out and their fans were feverishly supportive. Win or lose they would be champions at the end of the day. They, players and fans alike, had the courage to believe, to put it all on the line while respecting their competition. They were willing to accept the outcome win or lose. It takes tremendous courage to give your best when battling against a competitor that does the same. That type of fortitude is what makes champions.

So, why is all of this important? It’s important because it sheds light on what is possible in our society if, regardless of our beliefs, we set aside our differences and work together to solve the problems our country faces today. During the Cub’s run countless adversaries have come together and delighted in the joy of others. Barriers fell and the victory was shared and enjoyed. Can you imagine if we did that in other areas of our life as well? Can you imagine if, instead of always wanting, or needing, to win an argument we listened to one other with optimism and respect? Can you imagine, if at the end of the day, we had meaningful and open discussions about issues and problems? Can you imagine what would be possible? If that happened we would certainly see more joy and peace in our everyday lives.

My childhood friend John. One of the biggest Cub fans I know.

My childhood friend John. One of the biggest Cub fans I know.

At the end of the day we must acknowledge that this is just a game and that there are certainly far more important things in life. However, this game, this sport, which is woven into the fabric of our country, has taught us much. This year the Cubs’ World Championship leaves us with countless lessons that, if carried over into our daily lives, could help change the direction in which our nation seems to be headed. In a few short days our nation will elect a new president. Regardless of the outcome, hopefully the Cubs’ victory and the lessons from it can serve as a catalyst that brings us together to work with one another. I hope that it provides us with the beginnings of healing that we as a country so desperately need right now.

So, congratulations to the Cubs and their fans on what can only be described as a spectacular season. Spectacular because of what was accomplished on the field but even more spectacular because of what it has taught us in regards to coming together at a time when that is so badly needed. Enjoy the celebration and let that joy carry us to great things far beyond the ivy covered walls of Wrigley.

Be Great! Be Strong! Be Determined!

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Living with MS – Find Your Joy – Justine’s Story

In life we sometimes find joy in the most unlikely places.  For Justine Bemis, it certainly didn’t seem like the physical issues that began in the early 80’s would eventually lead her to a profound change in her entire outlook on life.  In 1984 Justine had surgery to correct a very severe case of scoliosis.  It wasn’t long after her surgery to correct the curvature of her spine that she just wasn’t feeling well.  As the doctors tried to determine what was going on Justine had a spinal tap performed.  She remembers it being a horrible experience and not being able to get out of bed for three days.  Justine hoped she would never have to endure anything like that again.

During that time the symptoms Justine was experiencing were consistent with MS but tests did not come back conclusively.  MRI technology at the time was not what it is today and the Harrington rods from her scoliosis surgery caused issues getting accurate readings.  Eventually her symptoms went away.  They would eventually come back and when they did they came back with a vengeance!

It began again simply enough in 1998.  Justine was tired all the time and most days she felt constantly lethargic.  She had dizzy spells as well.  “I felt like I had the flu all the time.  I also had terrible headaches.  They weren’t migraines.  They were very odd,” Justine recalls.

Justine went to the doctor to get some answers.  Initial thoughts were that maybe she had lupus or some other autoimmune disease.  Justine had one doctor appointment after another and several tests.  It became frustrating because all those tests and doctor visits resulted in no answers.  However, Dr. Stererret, Justine’s doctor, was undaunted.  He was determined not to give up, was very thorough, and kept searching for answers to Justine’s symptoms.

The lack of answers became increasingly frustrating.  Justine soon developed issues with her eyesight and her legs were always numb from her feet all the way up to her thighs.  “There was just nothing there,” Justine says.  Soon Justine began losing the feeling in her face and she had no sense of taste.  She could sense heat and cold but not much of anything else.

Justine was also experiencing weakness that progressed quickly.  It was so fast that there was a noticeable difference every day.  It continued to get worse as each day passed!  It wasn’t long and Justine started having difficulty walking.  Within months of developing the symptoms, she began using a cane.  “It would take me minutes to just walk from my desk to the other side of the office.  I would have to hang onto things to get there,” Justine says.

Justine was referred to a neurologist at the University of Iowa Hospitals to help figure out what was happening.  This was more than ten years after her previous MRI and technology was much better.  This time the MRI was more definitive even with the rods in her spine.  “They discovered that I had a brain,” Justine jokes.  “I found out that I had three lesions on the back of my brain and one in the front.”  The MRI results did point to a MS diagnosis but to be definitive the doctor wanted to do a spinal tap.  Remembering her terrible experience a decade earlier, Justine resisted but the doctor assured her it would not be as bad as it was previously.  Justine agreed to the spinal tap and, based on the results, she was finally diagnosed with MS.

Justine's Family

It was a very scary time for Justine and her entire family.  “It progressed so fast and so quickly that within three weeks Justine went from having some weakness to not being able to walk,” Justine’s husband Terry says.  When Justine went to the doctor she was sent straight to the hospital for steroid treatments.  Justine was there for a week and then spent another week at home not being able to get out of bed.

Justine had to begin weekly shots of Avonex to help combat her symptoms.  Terry had to give her the injections.  It was difficult for him to do that knowing that the drugs would make her feel like she had the flu.  “I also would get horrible headaches after receiving the shot.  They were just horrendous,” says Justine.  Justine continued to receive the injections for a year.  It cost them $1000 a month for four doses.  They could barely afford them but felt like they didn’t have a choice.  The drug was new and experimental but because of how fast she was deteriorating, Justine’s doctor wanted her on the medication to help maintain her current health.  Justine’s doctor couldn’t tell her how long she would remain at her current level of health before deteriorating further. However, he did say that her current condition couldn’t be reversed.  The doctor also told Justine and Terry that within a year she would be in a wheelchair and that they should begin to prepare for that possibility.

“We are people of great faith!  At the time, our older girls were in their senior and sophomore years in high school and our youngest was in eighth grade.  They were taking it very hard.  Every day they were seeing their very strong, vibrant mother fading,” Justine recalls sadly.  Justine was resting in her room one day and was very angry with God.  “I wasn’t a nice person to be around at that time.”  Shortly before Justine’s diagnosis she and Terry left very good jobs and moved to Dubuque to do what they believed God was calling them to do.  They were answering God’s call and this terrible, life altering event shook their seemingly perfect world.

Justine was angry and so was her entire family.  “As I lay there in my bed I remember I was reading my bible.  ‘Why did you do this to me God?’ I asked.  His answer, in that moment, was that you need to have joy in your life,” she recalls.  Justine decided to change her attitude that day.  Prompted by that conversation with God she began to try to find joy in everything.  “God revealed to me that I wasn’t doing that.  I was missing the joy in my life.  One of the fruits of the Spirit is joy.  Joy is not happiness.  Even when things are not good or happy you can still find joy in any circumstance,” Justine shares with a bright smile.

Justine and Terry

That day Justine and Terry began praying differently to God.  “My prayer was not that God would take away this horrible disease that I now had to live with but rather that we would trust God in whatever this would bring,” Justine says.  “It changed my whole outlook on everything.  God reminded me in everything that He is there for me.  We prayed to God for healing because He heals!”

Justine quit taking the medication shortly after that because the effects were horrible and she and Terry just couldn’t do it anymore.  “I didn’t want to give the injections to her anymore because who wants to give their wife something they know will make her sick,” Terry says.  The injections were also expensive, and although they seemed to help, Justine and Terry made the decision to discontinue their use and prayed to God.  When Justine informed her doctor that she wasn’t going to take the medication anymore it didn’t sit well with him.  He was upset with her and said that her Relapsing/Remitting MS would certainly get worse and not to expect any improvement.  Justine’s doctor said she could do as much as she could but it wouldn’t make her any better.  It wouldn’t change the outcome.  “Basically, he made me feel like there was no hope,” Justine recalls.

Justine refused to accept that answer and began to do extensive research to prove that prognosis wrong.  Everything she read pointed to diet and exercise.  All her research also said to keep moving!  “I felt as though I was being directed to be active.  I was never active and I certainly didn’t exercise,” explains Justine.  She joined a women’s gym and went every day over her lunch hour.  She began with simple exercises using small weights.  Before long Justine began to feel better.  Soon she didn’t need the cane to help her walk anymore even though she still had a pretty good limp.

After a few months of continued improvement, Justine decided instead of walking the three blocks to the gym she would run there every day.  “It was a real chore to walk the distance so the thought of running was a little absurd.  It really wasn’t running but it felt like it,” Justine says with a smile.  At the time when Justine decided to take up running, the notion seemed a little crazy because she still didn’t have any feeling or sensation in her feet and legs.  “To this day I still have those issues when I run and my feet often fall asleep,” she says.

As is common with being on steroids, Justine had gained weight and the new exercise program helped with losing what she had gained.  She also started drinking more water knowing that would help.  “I started eating for life and not just for the pleasure of food,” Justine says.

Justine Fun

In spite of all the improvements Justine has been blessed with as a result of her faith, exercise and nutrition she is still reminded that her MS is still there.  It hasn’t gone away.  Justine has issues with her eyes and suffers from optical migraines.  It is pretty scary for her when that happens but she typically has indications when she’s about to get one.  Justine has never gone blind in both eyes and for that she feels fortunate.  Like all people that suffer from MS, she also struggles with the heat.  During the warmer months she finds she gets worn down easier.  Terry gets upset with her when she insists on sitting in the hot tub but, “It feels so good!” Justine says.

Justine has become an avid runner and recently was sidelined for a month because of an ankle injury.  That was very difficult for her.  Justine believes running is one of the key things that have made a tremendous difference in her fight against the disease.  For that, Justine is very thankful and hopes she has many healthy years of running ahead of her.  “I’m probably as healthy as anyone in our family even though I’m older.  I can outrun and out walk all of them.  So it’s not something we talk about often,” Justine remarks in regard to how their family looks at her life with MS.

Both Justine and Terry agree that her diagnosis has made their faith deeper and stronger.  It has afforded them the opportunity to share their testimony.  It has given Justine a better understanding of how people have to deal with trials in life.  Justine strongly believes this has helped her become more compassionate and caring to others in need.

Justine has a hard time saying that she has MS because she certainly doesn’t appear to have any issues.  “Don’t ever give up hope.  It’s not a death sentence. There is life with MS.  Your journey will be different than mine.  Don’t compare yourself to someone else that you see because if they are worse that doesn’t necessarily mean that you will end up that way.”  Terry echoes those sentiments, “You can’t give up.  Your life is not over.  Listen to your heart more than your body.  Your body will say don’t do anything because you can’t.  Your heart will say, ‘No, get up and move!’  You need to!  Your heart can do more than your body thinks.”

Justine gives God all the glory for her remarkable improvement from what the experts said would surely be a future lived in a wheelchair.  “God said, get up and quit whining and find your joy!  Live every day for what it is and live your life!  No matter what life throws at you don’t let it steal your joy!”

Be Great!  Be Strong! Be Determined!

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Living with MS – Through a Child’s Eyes – My Story

It was in our living room on Northwood Court where my brothers, sister and I were told that our Mom had MS.  I remember the wallpaper on the main wall in the room.  It had a vertical flower pattern that kind of resembled corsages.  On both sides of the flower pattern were two lines with a smaller version of the flower between them.  The primary colors of the print were green and gold on a white or cream colored background.  Mom was sitting in a brown, wooden chair that had wicker sides.  There was a gold cushion on the seat and back of the chair.  Dad sat next to Mom and on that wallpapered wall above them hung two brown, wooden birds.

My brother Tim and sister were sitting on the couch that was along the wall to the left of our parents.  Mom was holding our baby brother.  The wall behind us had two dark wooden panels as accents.  One was wide and the other was narrow.  On that wall hung a huge painting, an oil painting that my Dad had painted.  It depicted an old man standing in a door watching a child ride a little tractor.  A woman looked out from an upstairs window.  For as long as I can remember that painting was there and now it is in my Dad’s studio in my parent’s home.  It’s funny how sometimes I can’t remember what someone told me five minutes ago, but I certainly always recall that room.

I knew mom had been sick, but I thought it was just the flu and would eventually go away. Truth be told, I didn’t think much about it. My eight-year-old self was busy going about the task of playing with the neighbor kids.  There was much to be done playing baseball, building tree forts, and catching crawfish in the crick we weren’t supposed to be anywhere near.  Eight-year-olds and children in general, even in their 40s for that matter, are selfish that way.

As a family, we were unsure, afraid, and overwhelmed honestly, about what was ahead for us.  What I remember from those first few years after Mom was diagnosed was that she was very sick and didn’t feel well at all.  Although we were all young, my parents did an exceptional job of helping my siblings and I understand what was going on.  Being the oldest, I felt an added responsibility to be the perfect child.  I was very quiet and didn’t dare do anything that would add to the stress I perceived my Mom and Dad were under.  I wasn’t perfect by any means, but I don’t believe I caused them too much grief.

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What I didn’t realize at the time was what a significant influence my mother’s illness would have on my life and the man I would become.  Many days I watched my Mom struggle to get out of bed to take care of four young children.  MS stole many things from her.  The disease affected her motor skills.  Her balance wasn’t good at all and she fell; a lot.  She developed a noticeable drop foot when she walked.  In addition, she had double vision and was dizzy almost all the time.  It made her very ill and I likened it to having the stomach flu all day, every day.  I’m sure there were many other symptoms I didn’t even know about back then, but Mom wasn’t one to let anyone know about them.

I learned some very valuable things from her during that period in my life.  Most importantly were the qualities of perseverance and strength.  I then thought, and believe to this day, that if she could manage to get up and be a mother, and an exceptional one at that, while she felt so horrible, then there probably aren’t too many things in life that I couldn’t overcome.  In fact, those lessons have been put to the test more often than I would have cared for them to be, and every time I survived one of those tests it made me a better person for having gone through it.

“If my Mom, who has MS, can walk approximately 41,500 miles over the last 38 years, I can surely run a measly 176 miles in seven days for my segment of the relay!”

I always questioned, “why her?”  “Why my mom?”  Even to this day, I still question what I perceive as injustices in the world.  That’s just my nature and something I really struggle with.  However, her illness provided me with an invaluable gift—how to remain strong in difficult times and do what it takes to overcome and persevere.  That gift, in truth, was not just given to me but to my siblings as well.

Mom’s illness with MS also provided some very valuable life lessons from my Dad as well.  I never heard him complain.

Never about the factory job he went off to everyday, at an hour before anyone else even thought about being awake.

Never about coming home after a long day and having to help prepare dinner for the family, especially if Mom was having a bad day.

Never about having to help kids with homework or give baths and tuck little ones into bed.

My parents were truly partners in life; for better or for worse.  My father taught myself and my two brothers what it meant to be a man and take care of your responsibilities.  He was an example of how to be honorable and respectful not only to those you love in life, but to those you didn’t as well.  He taught my sister how she should expect to be treated by any man that showed her attention.  He taught us how to love.  He never had to tell us, we just knew by his actions and what he did for all of us and in the way he treated and cherished our Mom.

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We all were also able to witness firsthand the generosity and selflessness of others.  It was truly a priceless life lesson.  When Mom was horribly sick neighbors and friends would stop by with meals.  They would help make sure my brothers, sister and I would get to all our activities.  Our neighbor, Bev, God bless her, would come over almost every day to make sure myself and Tim were ready for school and had our lunches packed.  She would then make sure the house was in order the way Mom liked it.  She did all of this and never once asked for anything in return.  Even when it meant putting aside things she needed done in her own home, she just did it.  Yet another lesson for all of us as a result of this horrible disease.

During those years and leading into my early teens, I developed characteristics I believe helped form me into the man I am today.  Those characteristics are a direct result of that time in my life and witnessing how my parents met the challenges in front of all of us, as a family.

When Mom was diagnosed it was a scary time, because not much was known about the disease then.  I remember going to a support group meeting as a family and many, if not all of the people there, were in wheel chairs.  I remembered thinking to myself, “Is this what is going to happen to our Mom?”  My Mom was and still is a very active woman.  That’s why it was so difficult to watch her be bedridden, sometimes for months at a time, when she would have an attack from MS.  I cannot begin to imagine what her and millions of others suffering from MS go through on a daily basis, especially when they are having a flare up as a result of MS.

“I am running for those that can’t because I CAN!”

I have distinct memories of Mom playing kickball in the cul-de-sac where we lived growing up. She would be out there with all the kids and would run to first base and jump up and down and scream with excitement. What I knew of the disease at the time was the ability to do that would quite possibly be taken from her, from us, and it might never happen again. I wondered if I’d ever see that excitement in the future. Little did I know that I most certainly would see that excitement again; because my mom’s a fighter! She refuses to give up and years later, after I took up endurance running I would again see that excitement. Every time she comes to watch me race I get to see it. I’ve never told her this, but I look forward to that each and every time. It has an incredibly special meaning to me. It’s like being that little boy in the cul-de-sac again.  I am thankful to God that I still get to witness it.  When I go by she actually looks like she’s going to jump out of her skin and I’m pretty sure the strain on her vocal cords is more than should be comfortable!

Mom Cheering

My Mom has been my inspiration to continue to push when it feels like I don’t have anything left to give.  She is determined to define her life, rather than letting MS define it.  It is her un-daunting example of determination that has led me to do many of my endurance events in the past several years.  It is also why when I heard about the MS Run the US Relay across America that I knew I needed to join the team.  Mom still walks three miles a day.  If my Mom, who has MS, can walk approximately 41,500 miles over the last 38 years, I can surely run a measly 176 miles in seven days for my segment of the relay! It is because of her example that I have the determination to join the fight against MS!  I am running for those that can’t because I CAN!

I’m looking forward to helping Mom realize a long time desire when I cross the finish line of my segment for MS Run the US. She will be there with me and it won’t matter that it’s not 50 miles but rather 50 feet.  I will be alongside her to make sure she doesn’t fall and she will cross the finish line; running!  I’m sure the excitement and joy I’ve come to love seeing while I’m racing will be there tenfold.  Only this time, it will all be for her.

While I do wish Mom never had to endure a life with MS, at the same time I would have to admit, in some ways, I’m thankful for it.  MS has absolutely taken much from our Mom, but it has also given our family so much.  Not having endured the challenges MS presented our family, I’m not sure that we would have learned all the lessons we learned.  Would we have become such determined and perseverant individuals?  Would the gentle, kind, selfless and bold love from our Dad have been as obvious?  Maybe, but maybe not.  We may never know, but one can’t ignore the results.  So, for that I am thankful.  Most importantly, I am thankful for the gift of my Mom and Dad, because their faith, love, and choice to deal positively with this life altering disease taught all of us so much.

So yes, I remember when my brothers, sister and I were told that our Mom had MS.  It was in our living room on Northwood Court.  I will never forget the beginning of one of the greatest lessons of my life.

Be Great!  Be Strong! Be Determined!

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Living with MS – Second Chances – Coni’s Story

In life you don’t often get a second chance to make up for previous missed opportunities.  Coni Stephenson is getting that chance thanks, in large part, to a decision she made three years ago regarding the treatment of her MS.  Coni was officially diagnosed with MS in June 2011, and it was a long road to arrive at that diagnosis.  Coni remembers not feeling well as far back as 2002.  During that time she couldn’t even enjoy simple things like playing with her grandchildren.  At times the entire left side of Coni’s body was numb.  She realizes now that she was probably having flares associated with MS.

Beginning in 2002 Coni became very ill and was very weak and dizzy.  Coni’s legs also felt very heavy making it difficult to walk.  Coni’s white blood count was elevated and her doctor put her on antibiotics believing it was some kind of infection.  At first, things got better but then worse again.  This went on for four months and eventually her doctor sent her to a neurologist who found spots on her MRI but no other tests indicated MS so he said Coni was depressed.  “Of course I was depressed.  I hadn’t felt very well in months,” Coni explains.

Coni never really did recover and struggled on and off for years.  In March of 2009 Coni’s mother was diagnosed with lung cancer and passed away the following month.  It was a very stressful time for Coni.  The remainder of that year Coni experienced numbness and tingling on the left side of her body frequently.  In the spring of 2010 she developed vertigo.  That fall Coni had an MRI and the results showed multiple lesions suggesting MS.  Coni was referred immediately to a neurologist and continued to see him every three months.  Her doctor at the time never did give her a MS diagnosis but, because her lumbar puncture was negative, called her condition MS suspect.  In June of 2011 it was no longer suspect.  Coni developed optic neuritis and by the time she saw the neurologist she could barely see out of her right eye.  Coni was treated with IV steroids and then Copaxone.  After the initial IV steroid treatment, Coni still didn’t feel well but she could at least function.

Coni Daughters and Granddaughters

A little over a year later, in the fall of 2012, Coni had another flare from her MS.  This time she was off balance and dizzy.  “I had issues throughout the years and I’m now sure it was caused by MS flares but I was never officially diagnosed,” she says.  Coni’s next flare came quickly after and she distinctly remembers the day.  It was March 17, 2013.  Coni again had terrible dizziness and had trouble walking on her own.  She had to go through IV steroid treatments for the third time.  “I just thought, ‘I can’t do this again,'” Coni recalls.  “Taking 1,000 milligrams of steroids a day is horrible.  I couldn’t sleep.  I developed anxiety that required me to take medication in order to function.  For the three days I am on the IV treatment I can’t work.  It is that bad.  I would have to take a full week off before I could return to work.  The steroids would help improve the symptoms almost immediately, but the side effects were horrible and I didn’t like what they did to my body.  When the steroids were stopped, I would fall into a deep depression and I just wanted to die,” Coni says.

Fortunately, Coni had some great family friends that suggested she try acupuncture to see if it could help.  Her friends believed so strongly that it would help her that they offered to pay for the treatments.  After three major flares so close together and struggling miserably with steroid treatments, Coni felt it was worth trying.  The course of Coni’s disease and treatment changed in April of 2013 when she was introduced to Katie Blair.  Katie is a licensed acupuncturist and Coni credits her with turning her life around.

Something amazing happened during Coni’s first acupuncture treatment. For years, Coni was always hot. She could never do much to cool herself down.  After the treatment was finished Coni asked Katie if she had turned the air conditioner on because for the first time in a long time she felt cool.  No adjustment had been made to the thermostat!  Coni noticed immediate improvement after only a couple of treatments.  Coni hoped the acupuncture treatments would reduce the intensity of her flare ups.  It would be a dream to not worry about having flares and wondering when the next one would occur.  Coni knew the acupuncture was making a difference in answering her prayers as she continued to feel better.

Even though the weekly acupuncture was improving her condition, Coni’s doctor continued her on Copaxone.  In July of 2013 she had a severe reaction to the drug.  “It felt like I was having a seizure only I was awake. I couldn’t get warm, was shaking and I was afraid I was going to bite my tongue,” Coni recalls.  Coni stopped taking the medication but the doctor on call felt it wasn’t a reaction.  She advised Coni to continue taking it to minimize the effects of another flare. Coni began taking it again and experienced the same symptoms.  Coni had previously talked to another MS patient that stopped taking the medication after experiencing similar issues.  Coni called the drug company’s nurse and was told her symptoms were definitely a reaction to the drug.   Coni stopped taking the drug and hasn’t taken it since.

Coni’s neurologist was not deterred and began treating her with a new oral medication.  In under a month Coni was feeling terrible from the side effects.  “I felt like my stomach was going to blow up,” she recalls.  This entire time Coni continued to receive weekly acupuncture treatments.  Coni spoke with her neurologist and they agreed to try and manage the disease with no medication.  They also scheduled a MRI in six months to make sure the disease was not progressing.  Coni was thrilled because the steroids and MS medications did a lot of bad things to her and the side effects she experienced were horrible.  After six months of only weekly acupuncture treatments, Coni had the follow up MRI and she couldn’t have been happier with the results.  The scans showed no changes to her prior MS lesions.

Coni and Grandkids

Coni was in her late forties when she first began to notice problems related to MS.  “I just pray now that if I have another flare it will be milder,” she says. “I am fortunate.  Because of the acupuncture and other changes I’ve made I can now do everything I used to do except mow my lawn.  I don’t do that because my neurologist warned me not to get too warm.  Most of my flares occurred in the summer so staying cool is important.”

Along with the acupuncture, Coni also changed much of her lifestyle and now uses all natural body products.  Coni is also making changes to her diet and the way she eats.  She is noticing a difference in how she feels as well as losing weight.  “I have been a nurse for more than 36 years and I have always believed in medicine.  I never thought much about a holistic approach but now I have a whole new outlook on it,” Coni says.

When Coni first began experiencing symptoms related to MS she was quite sick.  Coni had always been very active but had to alter all the extra things she had going on in her life.  Gone were the community meetings she had outside of work and committees she was on for her church.  She just couldn’t do them anymore.  “When I would go to work after a flare I would still be off balance at times and have to hold onto the wall to walk.  I realized quickly that I had to learn to take care of myself.  I used to take care of everyone else first.  I figured out that I wasn’t any good to anyone, including myself, if I didn’t attend to my own needs first,” Coni recalls.

MS affects each person differently.  Even though you can’t see it there are a lot of difficulties that you can’t explain unless you experience it.  “As a nurse I thought I knew what fatigue was.  Now, having to live with MS, I really know what it means.  I have been to a point where I couldn’t even walk up my steps to go to bed at night.  I don’t want other people to feel sorry for me or treat me any different.  I also realize I can’t be too serious about it either.  I make jokes about it.  If I can’t remember something I just say that thought probably landed on an MS lesion,” Coni says with a little laugh.

Coni’s family and friends did feel bad for her and the many difficulties she has gone through.  The loss of her mother was devastating, but they were there for her.  “I have been blessed with wonderful substitute mothers who have watched over and prayed for me.  I also have great family and friends.  My family and children didn’t understand the effects of MS until they saw me in a flare.  That was scary for them!  Their mom, who was always able to do everything on her own, now needed help.  I think I, like others, had some denial of the illness and hoped it would just go away.  After the second flare I realized I couldn’t deny anymore that I really had MS.  I had to figure out how to manage it.”

Coni and Son

Coni’s last MRI was a year ago.  She had no progression in the disease and her doctor thought that the lesions might be improving.  That is significant because typically treatment of MS is limited to keeping the disease from progressing rather than improving it.  “Honest to God, when Katie puts the needles in for a treatment it really works.  I’ve gone in before with numbness in my leg and when she puts the needles in my leg it will start twitching and it’s like the numbness is leaving my body,” Coni explains.  One thing Coni can’t stress enough is that if you are going to try acupuncture make sure you go to someone that is licensed.  She has also found that, in some cases, insurance covers treatments.  Coni has become an advocate in helping others seek treatment as well as helping them figure out if the treatments may be covered by insurance.  It is a way for her to give back.

Coni lives life differently now.  She listens to her body as well as her emotions.  After her second flare she decided to go on an antidepressant because the disease and the medication can bring anyone down.  “It’s OK to do that.  Sometimes it’s necessary in order to help move you in the right direction,” Coni explains.

Coni also doesn’t let anything hold her back from living a full life.  If an opportunity presents itself for trying something new she does it.  “If I feel well, I just go because I never know what may happen.  Tomorrow I may not be able to do it so I’m not going to miss an opportunity,” she says.  “I now pretty much go from the minute I get up in the morning until I go to bed at night.  Prior to seeing results with the acupuncture and feeling better I could never do that.  I just didn’t have the energy.  I am babysitting my granddaughter right now and it is great because I feel like I’m getting a second chance.  I wasn’t able to do a lot and enjoy my older grandkids as much as I wanted to because I just didn’t feel well.  Now I can do what everyone else does.  MS isn’t a death sentence.  It isn’t!  It is, however, a chronic illness and it has to be managed.”

Coni has a new appreciation for this second chance she has been given.  It has helped to lessen the debilitating affects MS has caused not only on her body but her emotional state as well.  Coni has made a lot of changes in how she treats her MS.  She takes care of herself so she can be around for all of her children, grandchildren, family and friends.  As she plays with her newest granddaughter she has renewed hope that her granddaughter will know and remember her as an active and involved grandma that loves her!

 

Be Great!  Be Strong! Be Determined!

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Lessons In Boston and Beyond

I ran today for the first time since tearing my calf muscle in the Boston Marathon almost three and a half weeks ago.  I felt an incredible sense of joy and freedom in my run this morning.  This morning’s run was in stark contrast to the last time I ran.  It was just me, the outdoors, my iPod and God.

Boston was filled with fanfare, cheering crowds, high expectations and what was supposed to be a great run with friends as we made the 26.2 mile journey from Hopkinton to Boston.  That wasn’t to be for me on that day.  Almost right away I knew something was not right with my calf.  Truth be told, I knew it in the week leading up to the race but denied it.  I wanted to believe I could do marginal things to take care of myself and make it work.  Within the first quarter mile I knew it was going to be a long day.  My calf was tight and after I had gone the first mile it just wouldn’t loosen up.  Gone already, I knew, was the plan of running and enjoying the day with friends.

Then it happened.  At right around the third mile it felt like someone ran up behind me and stabbed me with a knife in the back of the leg.  I pulled up immediately and initially couldn’t put much weight on it.  There were countless spectators encouraging me to walk it off.  “You can do it buddy!” they yelled.  My immediate thought was, “Are you kidding me?  I have 23 miles to go!”  I was angry and frustrated!  Soon, my trepidatious hobble became a walk and then I got impatient – It didn’t take long.  I began to run again.  By mile five my average pace was over 12 minutes per mile.  I didn’t have my iPod so there was no music to help distract the crazy thoughts that flowed through my head.  My friends were far ahead by now and I was left with the thousands upon thousands of cheering spectators and those thoughts that seemed to number in the thousands as well.

I settled in to, as some say, “Embrace the suck!”  It was going to be a much longer day than I had planned on but this was Boston!  Each and every step that day hurt.  If I didn’t focus and stepped wrong it hurt more.  After a while though, something happened.  I’m not sure how to explain it or how it was happening but by the halfway point I was turning out sub nine minute miles.  It certainly wasn’t graceful but I was moving.

Grinding through Boston

Grinding through Boston

To convey all the thoughts that went through my head that day would be next to impossible.  I was wearing one of my MS Run the US Relay shirts that day.  Much of my motivation to keep going was knowing that the pain I was experiencing that day; the disappointment I felt that day; the thwarted plans for the day, paled in comparison to the millions of people suffering from MS on a daily basis.  I knew at the end of the race or soon after that I would find relief.  People suffering from MS, as well as many other chronic diseases, never find relief.  They never get a break!  It’s not temporary!  It doesn’t go away!  Unlike me, they don’t have a choice.  I could have stopped at any one of the medical tents along the way and ended the temporary pain.  That is not the case for them.  They get up every day and face their day courageously, not because that is what they want to do, but because they have to.

I heard hundreds, actually probably thousands, of people cheering for MS.  All along the way people were yelling to stop MS!  I often wondered, with my altered running form that day, if people thought I had MS?  It didn’t matter.  I was proud to be out there and helping to raise awareness.  Awareness is the key to helping us beat the disease!  Those cheers and thinking about all the people I know with the disease kept me going.  In my own suffering, knowledge of their everyday fight was amplified.  It pisses me off that they don’t get a day off from the disease!  I knew I had to keep going!  I had to finish!  I just had to!

Through my stubborn determination to finish and try to help others by raising awareness I was also blessed with some incredible reminders in the form of lessons that day.  Some I realized immediately that day and some have begun to reveal themselves in the weeks since.  The injury forced me to slow down and realize I needed to take a “life inventory” and perhaps make some adjustments.  I quite possibly would have missed that had the day in Boston played out differently.  Because of the lessons I’ve learned I’m thankful it didn’t.  Here are some of the loudest reminders – so far.

You Can’t Outrun Denial

I knew I had issues with my calf going into the race that day.  I attempted to convince myself that everything was OK and I’d be just fine.  The problem was, I knew everything wasn’t fine but chose to ignore it.  That certainly is a reflection of life at times.  We believe we can choose to ignore issues or problems in our life and that they will go away.  If we pretend they aren’t real then they don’t exist, right?

My experience in Boston that day certainly reminded me of how wrong that thought process is.  Denying what is directly in front of you may often seem easier than addressing the issue.  Taking no action at all can appear to be the easier path to travel.  Frequently though, if not always, it leads to more difficulty.  Why? It’s because we are too afraid and cowardly to address the issue directly in front of us.  We’d rather avoid something that may be difficult so we can placate our temporary comfort in the moment.  Unfortunately, that approach doesn’t often serve us well and quite often causes more pain and frustration in the long run.  We end up even more uncomfortable.

Finishing at Boston!

Finishing at Boston!

Joy Needs to Be Recognized

Another incredible outcome from that day was a greater appreciation for joy!  If I’m being honest about it, this is something I struggle with.  I believe it has a lot to do with not living as I should in the moment.  As I look back on that day, I realize this is something I need to really put some focus on.  I have had several reminders since race day and for that I am thankful.  I need those reminders often and am trying to become more intentional in my actions; to live more in the moment and enjoy it for what it is.  Life is too short to live with regret.  This became incredibly clear to me as I looked at countless pictures from that day and the pure joy and smiles that were on many of the faces.  To my friends who blessed me with your joy – Thank you!  You have no idea how much those images have meant to me in recent weeks.  I’m sure you know who you are but if you are wondering just look at the pictures – it’s obvious!

There’s a Fine Line Between Selfishness and Selflessness

It’s been a long few weeks since Boston.  At times I’ve worried if I had been too focused on my own selfish desire to finish for the benefit of self-induced glory.  Did that selfishness screw up the bigger picture for this year which is to successfully complete my segment in the MS Run the US Relay?  I was so focused that day on my own desires that I temporary forgot about the bigger picture.  That selfishness also had me concerned that I was letting the people in my life down by not going fast enough and possibly not even finishing.  I am beginning to realize how wrong that was.  It doesn’t matter how fast I go or, in the case of races, if I even finish.  I found out later that many, as they tracked my progress, couldn’t figure out what was going on and were worried.  I could have alleviated all of that if I would have just stopped and let them know I was hurting, but was fine.

I’m realizing now that sometimes there is more honor in stepping back, re-evaluating and then moving forward in a prudent and thoughtful manner.  That doesn’t mean we shouldn’t have spontaneity in our life but there is a time and place for it.  It’s a balance and each person just needs to figure that balance out.

I honestly was nervous as I set out this morning on my first run since Boston.  I wasn’t sure what was going to happen.  I didn’t know if my leg was ready for the stress of running.  I almost made the choice not to go.  If I didn’t attempt to run I was sure my calf would continue to feel fine.  That would have been sad and disappointing.  All the lessons and reminders I was presented with over recent weeks would have meant nothing.  I would have ignored all the great things this experience had revealed.  I needed to trust everything would be alright – yet another lesson in this process.

And so, this morning, I ran.  It was just me, the outdoors, my iPod and God.  And for that, I am thankful.

Be Great!  Be Strong! Be Determined!

 

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Living with MS – A Walk of Love – Penny’s Story

Penny Ehlinger was a young mother of four small children and couldn’t understand why she was always exhausted.  While pregnant with her third child, Penny was continually dizzy and had trouble with her balance.  Her doctor told her it was due to the pregnancy.  However, after Penny’s daughter was born, the symptoms didn’t go away.

Penny’s husband, Jim, remembers one night, while they were walking across a parking lot, Penny’s leg just gave out.  Fortunately, Jim was there to catch her.  Penny also recalls a time when she walked across the street and the neighbor asked her why she was limping on her right leg.  Penny just assumed it was weaker than her left leg and didn’t think any more about it.  Denial is a powerful thing!

Life continued on for this busy mother and, three years later, Penny was pregnant with her fourth child.  After she gave birth, while in the hospital, she had a major exacerbation from MS but no one realized it.  Penny continued to be really sick for the next 3 ½ months.  Then, one morning, Penny woke up and looked at the alarm clock.  Everything was double; severely double!  Penny couldn’t see well at all.  She went to an ophthalmologist and he confirmed that she was having double vision but couldn’t find anything physically wrong.  Penny was sent home with instructions that if it continued for more than a few days she should see a neurologist.  Penny went home and the double vision didn’t get better; in fact, it got worse!  Within a week Penny couldn’t use her right leg.  “I couldn’t even manage to get out of bed and make it to the bathroom on my own,” she says.

Penny explains that the overwhelming anxiety she experienced at the time was off the charts.  “I felt like I was going to come out of my own skin!  I knew something was seriously wrong.”  This was in 1978 so there was no Internet to explore.  “We had a set of encyclopedias so I tried doing what I could to find an answer – any answer,” Penny explains.  That was no easy feat for someone who was having vision problems.  It took a lot of time and patience.  Penny diagnosed herself and feared she had Multiple Sclerosis.

At the time, Penny had a wonderful Christian man as her obstetrician.  “I remember one night after Jim spent the entire night awake and holding me that he called Dr. Straub,” she says.  Dr. Straub immediately admitted Penny to the hospital and made arrangements for her newborn baby to stay with her in the room.  Penny was breastfeeding and she refused to go without him.  A neurologist examined Penny and discovered that the entire right side of Penny’s body was neurologically affected.  The neurologist asked if she ever had to lift her leg up with her hands to get in the car.  Penny said that indeed she did.  He asked her if she thought that was odd.  “I never really gave it a thought,” Penny recalls.  “When you have four little kids you just keep keeping on.”

For months, things didn’t get any better.  Penny would spend most days in bed, only to get up and use the bathroom.  Penny’s mom would come in the morning to get the older kids off to school and take care of the younger two for the day.  Grandma Millie would stay until Jim got home from his factory job in the evening to take over.  Jim would make supper, help kids with homework, give baths and put the kids to bed.  Penny and Jim also had countless neighbors and friends who supported the family as well with regular meals and carpooling.  Penny’s neighbor Bev would check on her every morning and make sure beds were made, dishes were done and anything else Penny or the kids needed.  Penny recalls those days:  “I became very anxious and cried a lot!  There was lots of crying.  I needed someone to tell me what was wrong.  I had four little kids.  It was very scary to think that I could have this dreaded disease and I might not be able to take care of my own kids.”

Penny's Family

During the course of those months lying in bed, the anxiety became unbearable.  Penny couldn’t shake the extreme feeling of despair she was experiencing.  As a once very active mother, all Penny could manage to do was have her baby lie next to her and nurse him when needed.  On a good day, she might be able to help her oldest two sons with their spelling words.  There weren’t many of those days though and she was scared.  Very scared.  “There were a lot of tears and prayers.  I had so many questions that couldn’t be answered.  I just wanted to raise my kids by myself and I didn’t know if I would be able to do that,” Penny explains.  “My daily prayer was, please God – please let me raise my children!’”

At the time, almost 40 years ago, when someone was diagnosed with MS it was through a process of elimination.  There were no MRIs.  There was no definitive way for doctors to say, “You have MS.”  It was a very lonely, lengthy and frightening process with a lot of ups and downs.  Many years later Penny had MRIs so that she and her doctors would have a baseline to refer to for future attacks.  “I remember when the doctor called with the results of my first MRI.  I quipped, ‘Good news?!  I don’t have MS!?’” As hopeful as she may have been that wasn’t the case.  The scan showed lesions on her brain and confirmed the diagnosis from years earlier.  Penny didn’t look at that scan or subsequent scans.  “I don’t want to see them.  It would just make me think that IT was going to get worse.  It is what it is and seeing the scans won’t change that.”

MS affects each person differently.  Each patient can have different symptoms and the severity of the same symptoms can vary greatly.  One person could have few lesions and be very debilitated while the next person could have numerous lesions and not be affected much at all.  It all depends on where the lesions are located and how much damage they have caused.  When Penny was diagnosed, patients were advised not to do anything to add strain to their body.  As a result, patients affected by MS were told not to exercise, not to get overheated and that the best course of action was to sit and rest.

Although the months after her diagnosis were difficult for Penny, the diagnosis was also taking a toll on her family.  Jim recalls:  “I would get up and get ready to go to work in the morning.  Before I left I’d bring the baby to Penny so she could feed him.  I’d go to work and come home and do whatever had to be done – laundry, make supper, do the dishes.  I’d have the older two boys help with the dishes.   I’d do homework with them and then give everyone baths and tuck them into bed.  This went on for months.  One day on the way home from work I thought, ‘We can’t keep doing this.  I can’t keep doing this.’ ”

That night, when Jim got home, he did the unimaginable.  In addition to the love and care he had shown for his wife and family over this entire time he went a step further.  Jim dared to embark on something that was incredibly tough and something that he hoped would help the woman he loved so dearly.  He made her move!  Jim went into their bedroom and told Penny that she was getting out of bed.  They were going for a walk.  Penny told him that she couldn’t do it.  Jim wasn’t quitting on her that easy.  “That first day we got as far as the front step outside our front door.  We repeated that for several days.  Then one day we made it to the sidewalk and then the end of the driveway,” Jim recalls.  Eventually, they made it to the mailbox at the end of their property and then one day to the end of their street.  Jim took Penny on their daily stroll at least once a day and sometimes twice.  Many months later, Penny began to take walks on her own with neighbors going with her.

Penny and Jim at the Beach

“I remember one day I was walking with my neighbor, Bev, and it was about ten degrees out,” says Penny.  “We were about a mile from home and I told her I couldn’t walk anymore.  Bev grabbed me by the jacket and said, ‘What do you mean you can’t go?  You have to go!’”  All this activity was contrary to medical advice at the time, but Penny believes it is what saved her.  For the next 8-10 years the illness continued in a constant up and down cycle.  Penny went through a lot of physical therapy and steroid treatments.  She had many exacerbations and, for some reason, the Fall of the year always seemed to be worse.

Penny’s continued to experience vision problems and terrible dizziness.  Sometimes these symptoms would be so bad that she couldn’t even stand up.  Penny also experienced weakness in her arms and legs.  One time Penny had terrible burning around her waist and down her legs.  Eventually the burning changed to numbness and she couldn’t feel anything when she touched her legs.  Another time her doctor warned her that she could be experiencing irreversible damage to her optic nerve.  It was at times like these that Penny would reluctantly agree to take medication.  The MS drugs that exist today weren’t available yet and so typically that meant being treated with steroids.  All the while, Penny kept walking.

Not only is MS hard on the patient but it can be difficult and devastating for the family as well.  At one point Penny needed to wear a brace and use a cane on her walks.  She recalls her brother telling her he saw her walking one day with her brace and it really made him angry.  He pulled over down the road as he couldn’t control his tears. When Joshua (Penny’s youngest child.) was in a summer program for soccer Penny says she will never forget a heartbreaking incident.  At the end of the program Josh started running towards the car where she was waiting and then suddenly stopped, turned around and went back to the coaches.  Later, Penny asked him what he was doing and he said, “They told us to go get our parents so they could play with us.  I’m sorry Mom, but I knew you couldn’t do that.”  Penny recalls that moment with tears running down her cheeks.  “We had many times like that.  But that little boy understood it.  For all of us that was our normal.  I just wanted my children to have all the opportunities that other kids had and there were times when I felt like I couldn’t provide that for them.”

Once the kids were all in school, Penny decided to try and go back to work part time.  She believes this helped her psychologically.  “It made me feel like I was worth something again,” she explains.  Eventually, Penny went back to work full time at a local college.  “I didn’t know if I could work full time.  There were some days when I literally had to crawl up the stairs to my office.  But I saw this as an opportunity to help provide a college education for my children.  It was actually pretty amazing how it worked out.  My motivation was to get my children a college education but my husband was able to complete his degree as well.  I suddenly realized that this was something I wanted too!”  Penny’s motivation to get her children a college education eventually led her to fulfill her own dream of completing her degree as well.

Penny started an MS support group in her hometown of Dubuque.  She found that many patients needed some motivation and a reminder that MS wasn’t a life sentence of doom and gloom.  Many of the people that came to those first meetings were in wheelchairs and could hardly get across the room.  Penny told them if all they could do was get up and walk across the room then they should do it.  “Don’t do it just once a day, do it five times a day!  Don’t ever stop moving.  Do something – anything!” she told them.  It wasn’t always easy going to those meetings because, seeing others more disabled, was a constant reminder of what the future might hold for her.  Penny also found herself feeling guilty that she was fortunate enough to take those walks every day.  But the support group was something she was committed to in order to help others.

Penny still has struggles today.  Her balance is impaired but in spite of that she remains very active.  Penny trips and falls.  A lot!  There have been many bruises and broken bones over the years including a broken hip.  But, Penny always gets back up.  She refuses to let MS keep her down.  “Psychologically, you need to set goals for yourself.  To have motivation, determination and being driven can make a difference.  I think you just need to keep moving despite how you feel.  You can’t give up!”

Walk at Sunrise

Jim agrees.  “It can be hard on a marriage and a relationship.  I knew people who divorced after a diagnosis of MS but that wasn’t an option for me.  I couldn’t leave Penny sitting there and not help; not continue to love her.”  Penny adds, “We had four kids and we had to figure it out.  We had to figure out what worked for us.  I hope it made our kids better people, more understanding and compassionate for those that have problems.”

Penny says the motivating factor for her each day is, “When I get up, especially on days when I feel really, really bad.  I get up and I strap those braces on; those ugly braces.  And I hit the road because I don’t want ‘IT’ to have control.  I don’t want to have to say I can’t do it!  That time every day is my time.  It’s not IT’S time!  It’s all mine to talk, walk and gawk with God!”  Penny’s advice for others that find themselves living with MS is not to compare yourself to other patients.  Even though there are similarities, every case is unique.  “You can’t give up!  Keep on moving on!  My friend Charlotte, who has MS, gave me a bronze snail years ago.  I cherish it dearly.  She told me that, ‘the snail is slow, but it usually gets where it needs to go.’”

Jim can’t echo Penny’s sentiments enough.  “It affects more than the person suffering from the disease.  You need to step up to the plate and do what needs to be done.  Do whatever your partner is capable of and keep the interest and activity going.  For example, we never ever imagined we would be enjoying ballroom dancing at this point in our life but we wanted to learn how to do it for our daughter’s wedding.  I know Penny’s limitations and we adapt as we need to.”

In the end sometimes it is love and motivation that can help you overcome the struggles in life.  “Something Jim said to me many years after my diagnosis was, ‘If I had walked out in the beginning look at all that we would have missed.  All the amazing, incredible, irreplaceable things with you and our kids’,” Penny shares lovingly as she looks at Jim.  Yes, MS may have taken much from Penny but for her and her family much more was gained.

 

Be Great!  Be Strong! Be Determined!

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Living with MS – Courageous Risks – Jenn’s Story

Sometimes in life we just need to take risks.  Jenn Schmitt knew when she was diagnosed with Multiple Sclerosis at the age of 26 that there would be some risks she would have to take.  She would be glad to do so.  That was a tough time for Jenn.  While the rest of her family lived several hours away, Jenn was single and living in Des Moines, IA.  Jenn’s doctor, a well-known neurologist specializing in the treatment of MS, was extremely positive when delivering the diagnosis but cautioned her not to have children.  This was a difficult reality for Jenn to accept and it would play a large part in her choices when considering specific treatments.

Jenn’s symptoms began simple enough.  She noticed numbness in her hand but didn’t initially seek treatment.  When she finally did have it checked, it was believed to be nothing more than a pinched nerve.  After some time with no improvement, her sister, who is a doctor, suggested Jenn see a neurologist.  About the same time Jenn’s symptoms grew worse.  She couldn’t type and do her job anymore.  After a spinal tap and MRI test that showed she had lesions on her brain, Jenn was diagnosed with MS.

Prior to her diagnosis, Jenn’s only exposure to the disease was a high school classmate whose Dad had MS.  He was in a wheelchair.  That’s all she really knew about the illness and hoped that wouldn’t be her future.  She was scared.  Jenn’s doctor began treating her with the drug Solu Medrol.  It was administered through an IV so Jenn had a nurse come to her house daily for a week to give her the medication.  Complications from the spinal tap had left her with a severe headache that kept her in bed for several days.  “We discussed a spinal block to reduce the headache but I was afraid to have them do anything with my spine again.  Instead, I drank lots of caffeine,” she explains.  The headache began to taper off after about five days but fortunately Jenn noticed a difference in the MS symptoms after just three days of treatment.  It was like night and day.  When her symptoms had cleared she had discussions with her doctor about further treatment options.  Jenn was apprehensive about all of them.  She didn’t like shots and decided against those.  Jenn researched everything she could and decided the best option for her was to make some changes in her diet and remain active.

One of the reasons Jenn decided against drug treatments was because she knew she wanted children.  That was not advised if she was taking the recommended medication.  It was a risk she was willing to take in order to begin a family.  Three years after being diagnosed with MS that dream was realized when Jenn had her first daughter.  During the pregnancy Jenn felt fine.  “I felt like I didn’t even have MS,” she says.  That all changed after her daughter was born.  “In the fall after my daughter was born, I began to lose feeling in my legs,” Jenn said.  “When I went out of town for a meeting and had trouble walking three blocks to get back to my car, I knew I had to seek treatment.”

Jenn and Daughters

Jenn had another MRI performed and while there were no real changes, there were certainly physical symptoms.  Hesitant to go with Solu Medrol again, Jenn’s doctor agreed to start her on oral steroids.  That didn’t help and she was forced to try a small dose of Solu Medrol.  That seemed to help.

At one point Jenn did, in fact, try injections for treatment.  However, she really struggled with this. “I would sit in the bathroom filled with anxiety for an hour hesitating, not wanting to give myself the shot, before I could finally do it,” she explains.  Although Jenn did give herself injections for a short period of time, she decided to discontinue them.  Between the side effects and the terrible anxiety she struggled with daily, it wasn’t worth it to her so Jenn stopped.

The decision was well worth it when, two years later, Jenn was fortunate enough to have a second daughter.  During this time, she worked from home so it was easy for her to manage her symptoms and combat the disease.   For the most part, if Jenn had any issues it was easy for her to rest and get better.  For the next 11 years Jenn experienced no major flare ups.  She did experience increased numbness in different parts of her body but those were controlled with steroids when necessary.

Many MS patients have issues with extreme temperatures.  Jenn is no different.  She notices the symptoms more when she goes from being warm to cold during the winter.  She seems to struggle more when her body temperature changes very quickly.  In addition, Jenn almost always has some numbness in her hands and she notices that she gets worn down fairly easy.

For many years, Jenn lived in silence about her MS.  She wouldn’t tell anyone she had it.  That has changed and Jenn wishes more people understood what MS was and how it affects those that have it.   She believes increased awareness makes a huge difference.  “Once I decided that MS was a part of who I am and I wasn’t going to keep it to myself anymore it was amazing to realize how many people I encounter every day that are in some way affected by it.”  Years after she had her second daughter, Jenn shared with a coworker that she had MS.  Her coworker was shocked to learn this because she had a sister that had it and used a wheel chair.  Her coworker just couldn’t believe how well Jenn was doing in spite of the disease.  Experiences like these have left Jenn feeling uncomfortable about how well she is doing.  “I hear other people’s stories and I feel bad.  People can look at me and not know I have MS.  I feel guilty about that sometimes.  Why am I so fortunate?”  There were days when Jenn questioned her diagnosis because she felt so good.  At one point she even got a second opinion.

Jenn Sisters and Dad

It is understandable why Jenn had those questions.  She has done so well that until this past fall, when Jenn had her first major attack in 11 years, her own daughters really didn’t understand how MS affected her.  While Jenn could tell she always had an issue with her balance, her daughters could not.  It was their first real exposure to witnessing their Mom struggling and having to undergo treatments for MS.  This most recent attack began with a cold sensation in her left leg and within a few weeks her leg felt numb.  If she sat too long it would become painful and she noticed a lot of back pain.  This time she also realized it was affecting her vision.  Again, a MRI showed no major changes or progression, but Jenn’s doctor wanted to start her on a medication specifically for MS.   Jenn resisted because, again, she didn’t care for the side effects.  Fortunately, she was able to manage the flare up through a small dose of steroids and rest.  Thankfully, once she began the treatment, her vision became brighter and crisper and the numbness in her leg improved.

Jenn believes it is very important to lean on your friends and family.  “At one point, in the beginning, I didn’t think I needed any help and could do it all on my own,” she says.  “I lost my Mom when I was five and so all I had at the time were my Dad, sisters and a very caring man that I was dating who would later become my husband.  I think they took my diagnosis harder than I did.  My sisters lived in the Twin Cities and one of my sisters came down for all my appointments.”  Jenn’s future husband also made coping with the diagnosis easier because it did not scare him.  “He was very supportive then and even though we are now divorced he is still supportive and has been there when I needed him,” she says.

Jenn’s attitude regarding her diagnosis was that she would figure out what her new normal was and make the best of it.  She tries to maintain that positive attitude every day.  However, it’s not always easy.  “This past fall when I had my flare up, I had just bought a house.  I try not to do “what ifs,” but this last time I really struggled,” she admits.  Jenn had stress in her life before including two pregnancies, building a house, loss of family members, and a divorce from a very supportive husband.  Through all of this she never had any major flare ups so she feels fortunate.  “I have had worse things than MS happen to me in my life, but I have a very supportive family.  I take it day by day.  You don’t often run into people that have MS that are as fortunate as me so I count my blessings.”

Jenn Family

Jenn’s faith in God has played a big role in maintaining her positive attitude.  “Since my ex-husband and I did not grow up in Dubuque we struggled finding a place to worship God and grow in our faith.  Fortunately, I found Hope Church in Dubuque.  I strongly believe my faith is what helps keep me strong and positive,” she says.  Jenn believes daily prayer and following God makes a huge difference when facing any adversity in life.

One thing Jenn can’t stress enough is how important it is to become knowledgeable about and understand your body.  “It’s important to understand when you need your rest or that you have to change what you are doing,” she explains.  “Don’t be afraid or too prideful to ask for help.”  Even when her ex-husband asked what he could do during her recent flare up, Jenn accepted his help.

There are certainly many challenges with MS, but Jenn has the mentality that she isn’t going to let it beat her.  After the births of her daughters, she had gained weight and in 2010 lost about 45 pounds.  “I knew I needed to strengthen my muscles and keep fit.  I wanted to be able to successfully minimize the effects of MS without the treatment of medications,” she explains.  Jenn started hiking and finds she really enjoys it.  She also began doing hot yoga, something that most MS patients would have difficulty with given their sensitivity to heat.  “I’ll try anything and if I find it’s affecting me I just back off.  I’m not afraid to walk out of a yoga class if I’m having difficulty handling the heat.”  Jenn hasn’t done hot yoga for a few months but has been working out with her friend, Jamie Kemp, at Planet Fitness regularly.  Through the help of Jamie she is building muscle that is making a difference.

Jenn believes her positive attitude helps tremendously in preventing MS from holding her back in all that she wants in life.  That doesn’t mean it’s always easy or she doesn’t have fears.  Does she have a fear that someday she could wake up and not be able to get out of bed?  Absolutely.  Jenn’s biggest fear is that of losing her vision. “That above anything else would be difficult,” she says.  However, Jenn also realizes that she is fortunate.  If there is one thing she wants others who are living with MS or are newly diagnosed to know it is that, “You can live a full and meaningful life in spite of MS.”  Jenn’s attitude, her approach to life, and fearless courage to try new things is certainly an example for others to follow.

 

Be Great!  Be Strong! Be Determined!

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Living with MS – You Are In Charge – Kate’s Story

When she began losing the vision in her right eye one night at work, Kate Knepper just figured she needed to change her contacts.  It seemed to be an easy enough solution.  Kate knew she had been sleeping without taking the contacts out and hadn’t changed them as often as she should.  A simple change of the lenses when she got home would make everything better.  Kate’s vision, however, didn’t get better so she assumed she needed a stronger prescription and went to see her doctor.

That is when the uncertainty set in and the world for this 21 year old college student suddenly changed.  Once Kate was at the doctor’s office she knew immediately something was wrong because they were putting her through many different tests that she had never been through before.  When they gave her a color vision dot test, she couldn’t read the numbers.  Kate didn’t even know there were numbers there.  Most of us would see flashing lights during a visual field test but Kate saw none of that.  Her doctor told her that she was having a medical emergency and sent her to the hospital to see a neurologist.  Kate was terrified about what could be wrong.

Over the next two weeks Kate endured numerous tests and they did not go well.  Getting to a diagnosis of what was going on was rough.  After a spinal tap the puncture in her spinal cord failed to close and spinal fluid continued to leak out.  The pain was indescribable.  Kate suffered from terrible headaches and couldn’t even stand up for days.  To stop the leak they needed to perform a procedure called a blood patch.  Doctors punctured her spine again in order to remove some blood and use it to plug the original hole.  The first attempt failed and they had to do the procedure again.

In addition to the tests on her spinal fluid, Kate also had electrode frequency testing on her brain and a MRI.  The electrode testing returned poor results and the MRI confirmed that she did in fact have lesions on her brain.  At only 21 years of age Kate was diagnosed with MS.

Kate found herself having to temporarily move out of her apartment and back home with her parents.  Once there, she spent two months on their couch unable to stand or walk.  Kate’s fears were very real and there were many.  She didn’t know what was going to happen and thought her life, as she knew it, was over.  Would she be able to graduate on time?  Would her boyfriend at the time and now husband, Josh, stay with her or decide that this was something he didn’t want to sign up for?  How would this affect the career Kate was so looking forward to beginning in just a few short months?  Would she be able to walk and regain her clear sight?  At the time, all Kate really knew of the disease was that the father of a boy she dated in high school had it.  He was in a wheelchair.  Kate couldn’t help but wonder if that was in her future as well.

Kate's Family

“It hits you like a Mack truck,” says Kate of her diagnosis.  “When the doctor met with me she certainly didn’t help calm my fears.  She went through all of the bad statistics associated with MS.  Higher divorce rates, workplace discrimination and many other things.”  It is because of that meeting with her doctor that Kate kept her diagnosis a secret and didn’t let anyone know about it for a long time.  As long as she wasn’t having a flare it was easy to hide.  Even those close to Kate did not know she had a chronic disease that caused her daily struggles with things most of us take for granted.

After the initial attack and diagnosis, Kate went three years with no flares or relapses.  She was able to keep her secret very well and no one had to know.  That all changed when her symptoms returned.  Kate was in the beginning years of a budding and promising career and she had to talk about it.  It was important for her employer to know what was going on.  Also, in the time since her initial diagnosis Kate realized that there were laws that would protect her from workplace discrimination.  Not only was it important for those around her to know what was going on, it gave Kate an opportunity to help educate and increase understanding of the disease.  Even more important for Kate was that she be the best she could be for her son.  By actively being involved with raising awareness she was an example to him that sharing your struggles is not something to be ashamed of and certainly doesn’t define who you are.

That decision to share and educate those around her hasn’t held Kate back.  She currently is the Director of Business Initiatives for Prudential and is also the site lead for her office in Dubuque.  Recently, in 2015, Kate was also named one of Dubuque’s young Rising Stars in 2015!  The Rising Stars award is given annually to area residents 40 years old and younger who demonstrate leadership in business, serve as a role model for others, and volunteer in the community.  

Kate

Kate has Relapsing Remitting MS.   She has had recurring issues with her eyesight and at times it has left her unable to walk.  Like most MS patients, Kate is also affected by heat.  When heat and fatigue are in play, her balance is off and she suffers from vertigo.  What people need to understand about the fatigue is that when she stays up too late or exercises more than she should, it affects Kate more than it would someone without MS.  At one point Kate couldn’t seem to shake the symptoms and get better by resting.  It got so bad that cognitively she couldn’t even form a sentence.  She went in for scans and found that it truly was more than your run of the mill fatigue; doctors found two new large and active lesions.  “If you don’t laugh sometimes you’ll just sit there and cry.  I’ve cried.  There’s been lots of crying,” Kate says.

Kate finds that each flare up affecting the same part of her body can be different.  One time her legs may feel like she has a rug burn all the way up and down her leg; the next time she can’t feel her leg at all.  Fortunately, Kate’s treatments are working and being affective.  At her most recent appointment there were no new or active lesions.  “I can’t remember the last time I had a scan and there wasn’t a new or at least active lesion,” she says.  The good news is she now only has to have scans once every six months instead of three and soon she’s hopeful it will only be yearly.

Kate feels very fortunate to work for Prudential.  They have very good benefits and are extremely understanding.  If she is having a bad day, she can work from home and not have to worry about trying to make it through the day at the office.  Kate also stresses that having a support system at home is important.  “My husband Josh is truly amazing.  He is a wonderful partner.  He is always there to pick up the slack and is probably better than I am at making sure I’m taking care of myself and my health.  He is a true partner.  I am damn lucky!”

As Kate has matured in her career and along with the disease, she understands what has to come first when.  She’s found that it’s more of a trade off than trying to find the right balance.  When Kate is experiencing a flare up she now realizes there needs to be a shift.  It took her awhile to get beyond being concerned about what others think about taking care of herself and her family first.  That’s important to Kate.  More important than her successful career. 

Kate and Son

“I had MS before my son was born and so he has never know anything different.  For him, Mom has always done shots.  His job when he was younger was to go to the store and pick out crazy band aids for me to use,” she says with a huge smile.  “When I was pregnant it was the best I’ve ever felt MS wise.“  After Kate’s son was born, every time she tried to go off her treatment to get pregnant again she’d have a major flare.  That began a whole new set of fears and concerns.  What if she had a bad relapse and couldn’t get back to her normal baseline?  What if she was pregnant and had a flare up and couldn’t get treatment?  For all of those reasons, Kate and her husband decided the best way to expand their family was to become a foster family. 

Kate does have advice for those finding themselves suddenly living with MS.  First, she would encourage them to find someone else close to their own age that has MS.  Kate stresses that it helps to have someone that has the perspective of living and dealing with MS on a daily basis.  It is very hard for those that haven’t experienced the seemingly random and changing symptoms of MS to completely understand what it’s like.  Having someone that has had the same experience as you makes a difference.  “You can get in your own head and drive yourself mad wondering if this is an MS symptom or not,” she adds.  

Secondly, Kate can’t emphasis enough how important it is that you realize you are in charge.  Her initial experience with her physician and the dark picture she painted is not one Kate believes anyone should have to hear or believe is their future.  “You are the one that is in charge of your health and healthcare.  Don’t be afraid to take charge in how your treatment and disease is managed.  No matter what health issues you are having it is important to have a good relationship with your care team,” she says. 

Finally, Kate believes there is a lot of benefit in advocating for the disease and raising awareness and helping to find a cure.  “That’s what makes you feel like you are contributing and making a difference.  I was delayed in doing that.  Don’t be hesitant to talk about it and answer questions.  The questions always come from a good place even if sometimes they are silly.”

Kate has always been intrigued by the invisible pieces of MS.  “I go between this place of wishing people could see more of the disease and what’s happening inside my body.  But then I’m also glad that I can assimilate with everyone and no one knows the difference.  I just find that to be interesting,” she says.  One thing is for sure, and whether you can see the awful affects MS has on her or not, Kate is making a difference.   She certainly isn’t that scared 21 year old anymore.  She is a strong and successful businesswoman, and more importantly, a determined wife and mother that shows anyone willing to look and listen that living with MS is not a life sentence.  It is not living a life in fear but rather one that, when managed, can be even fuller and more complete!  Kate acknowledges that MS may be difficult and that it causes terrible things to her body but it will not stop her determination to have the career, family and life she wants and deserves.

Be Great!  Be Strong! Be Determined!

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Living with MS – Answered Prayers – Amy’s Story

Often we pray for things in life and wonder if they are answered or not.  Many times those prayers are truly answered and we just don’t realize it at the time.  Amy McGovern is a mother of three young children and a wife to her adoring husband, Dan.  She feels as though she always prays but little did she know, over five years ago, how those prayers would be answered.  She and Dan were living in Rockford, IL and Amy wanted to move back home to Iowa.  So she prayed.  Not only did Amy pray that they would be able to move back home but, also that Dan would find a new job with regular hours and that they could expand their family by having a third child.

While pregnant with their second child, Griffin, Amy noticed she had some numbness in her feet but quickly dismissed it as issues related to the pregnancy.  She, along with her doctor, thought that it was most likely sciatica and once the pregnancy was over it would go away.  Seven months after his birth she started getting extremely bad headaches.  Amy was suffering from some post-partum as well and was convinced that she had a brain tumor.  She went to the doctor and they performed an MRI.  The good news was that there was no tumor but she did have some white lesions that were consistent with Multiple Sclerosis (MS) or migraines.

Soon after she noticed numbness in her right hand and tried going to a chiropractor for about three weeks.  Then the numbness returned in her right leg and she was referred to a neurologist.  Another MRI was performed which again showed lesions.  The MRI was followed up by a spinal tap.  That was on a Friday.  After a long weekend of anxious waiting, Amy received news on her 29th birthday that she did in fact have MS.

That day was very surreal.  Like anyone, Amy had many questions in the months that followed.  During this time they were still living in Rockford, separated from their extended family.  That entire winter she was in a funk and slipped into a depressed state not knowing what her life would be like going forward.  One of the biggest questions she and Dan had was would they still be able to have another child that they wanted so badly?

McGovern Family

Amy remembers very vividly a conversation she had with her Mom on the phone sometime after her diagnosis.  Her Mom told her, “Your aunt Debbie is so impressed with how strong you are.”  Strong?  Amy had never seen herself that way in the face of this life changing disease that had suddenly rocked her world.  Soon, Amy realized that her aunt, mom and many others were right!  In spite of having MS she was still working and raising two small children.

“I’m kind of glad I have MS.  I think I have it for a reason, and I’m glad I have it and Dan or the kids don’t have it.  I think it’s made me a stronger person and has deepened my faith and brought me closer to God.  So for that I’m glad.”  Wow!  What an amazing outlook on what could very easily bring most to their knees in sorrow and despair.  Amy certainly still has days that she struggles, as we all do, but has realized that in spite of MS, she has a purpose and has every intention of fulfilling it!

Amy first began treatment with a once a week shot called Avonex.  It was effective in keeping the symptoms and flair ups at bay but it would wipe her out the entire next day.  “I kind of felt like I had the flu,” she says.  “I would also be extremely achy and get hot and then cold with the chills, but the shots were definitely worth it.”

Since her initial diagnosis the only time Amy has had issues with flare ups from MS is when she has been off the treatments.  She and Dan both wondered what that would be like if she became pregnant with their third child.  By this time they had moved back home to Iowa.  Her doctor in Dubuque didn’t want Amy taking treatments while they were trying to conceive, so she went off the shots and had a flare up.  This forced her to begin receiving treatments again.  The new treatment was with a different drug requiring daily shots.  Amy wasn’t excited about having to inject herself daily but it allowed the couple to still try to conceive.

Amy eventually did become pregnant and was told that the MS would most likely go into remission during the pregnancy.  “The third pregnancy was horrible,” Dan says.  Amy had an episode at about 14 weeks that required her to take a week off of work.  A short time after that she had a second flare up and this time it introduced a new symptom.  Up to this point her symptoms were always related to numbness on the right side of her body.  This time things were different.  She began having issues with vision in her left eye.  Her eyesight in that eye became what Amy describes as dim and it kept getting progressively worse.  She was scared and frightened.  Not only was Amy pregnant and concerned about the baby but she now had the added worry of wondering whether she could continue to work.  Amy absolutely loves being a hair stylist so her sight and being able to be on her feet all day is very important.  Would MS take that away from her?

Amy with Kids

Despite all of this Dan says Amy deals with it well.  It is easy for her to get wore down and she tires easily.  Amy has Relapsing Remitting MS and she has lesions only on her spinal cord at this time.  Her toes and feet are always numb and if she gets overheated her hands will sometimes go numb as well as her cheek.  Once Amy rests or cools down this typically goes away.

Dan is often concerned about what the next episode may bring and when it will happen.  He and Amy are now both grateful she is on a treatment plan that only requires her to take two pills a day.  It’s much better than the shots and, even though there are some side effects, the tradeoffs are worth it.  Recently, they had an issue with insurance and Amy was off the medication for two weeks.  Dan says it is frustrating when issues related to insurance could cause his wife to be sick unnecessarily and he can’t do anything to change that.

For most people that suffer from MS, the summer poses bigger issues.  The heat is difficult and the humidity is worse.  When the humidity and mugginess rises, it can really wipe Amy out and zap her energy.  Dan is very aware of this and reminds her that it’s OK to take a break.  That is much easier said than done when you have three little ones running around.  Amy says keeping up with them makes it sometimes easy to forget she even has MS.  The kids are pretty young but they know their Mom has MS and that she takes medicine every day to help her.  They got a book from the National MS Society called “Keep S’myelin” to help explain to the kids what it is and to reassure and alleviate any apprehension they had.

Even though she is very open about her diagnosis most people wouldn’t even know Amy has MS.  “It makes you realize that everyone may have something even if you don’t see it,” she says.  Having MS has caused Amy to look at things differently and enjoy life and be grateful for it.  It has reminded her to have patience and treat others kindly because you don’t know what is going on in their life or what struggles they may be trying to overcome.  “It certainly makes you look at things differently and opens your eyes to the generosity of others.  During one of my flare ups while I was pregnant, a neighbor up the street we didn’t even know that well brought us a meal.  There are a lot of good people in the world!”

Growing up Amy says that although she felt faith filled she didn’t necessarily have a strong connection to God.  That has changed now.  Anxiety has always been something Amy has dealt with but now, “I put it all into God’s hands.”  Dan agrees and would have rather the disease had affected him but believes Amy handles it with grace and strength.   “This has made our marriage stronger.  I was at my lowest and he stepped up.  You see someone’s true colors in times like that,” Amy says as they both look at each other, their faces erupting into magnificent smiles.  It was more than just smiles though; it was the two of them sharing with each other the joy and love they have for one another.  One couldn’t help but notice the peace behind those smiles that no matter what the future with MS will throw their way that they will be alright.  One strong woman determined to live her life and her adoring husband who is right there next to her for whatever she and his family needs.

 

Be Great!  Be Strong! Be Determined!

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MS Run the US – What Are Your Blessings?

I have been given a tremendous opportunity to do something this year that literally could be life changing.  Is it scary?  Do I have doubts?  Of course I do.  I have them because this opportunity will require me to stretch and, in many ways, step out of my comfort zone.  Sometimes our greatest moments of clarity and growth happen when we take a risk; when we choose to act!  That growth is even better when the choices we make and the actions we take are to benefit others.

Early last summer I read a post about a running relay across America for Multiple Sclerosis (MS).  My mother has lived with MS for the past 37 years so this was something that naturally intrigued me.  The relay team consists of 18 runners.  Each runner spends six or seven consecutive days running, on average, 180 miles over those days.  The purpose of the relay is to raise awareness and money for MS research and to help those living with the disease.  In addition to completing their segment each runner is responsible for raising $10,000.

I contemplated doing the relay for a few weeks and discussed it on runs with some of my closest friends.  We have the same mindset when it comes to running so I wasn’t surprised when they were supportive.  My mother, on the other hand, didn’t share the same type of enthusiasm.  Like most moms, even though I am a middle aged adult, she still worries – A lot!  When I finished my interview for becoming a member of the team and told her I thought it went well her exact words were, “Oh, crap!”  Despite her initial concerns she is now very excited about it and I plan to cross the finish line with her – running!!

Team Jill

For me, the fundraising seemed to be the most daunting aspect of being part of the relay team.  Sure, training for and eventually running 180 miles in seven days is no joke.  However, to raise that kind of money would really cause me to do things that not only have I never done before but that I was also uncomfortable doing.  I don’t like to ask for things and especially money.  In fact, when I was growing up and in scouts I hated when it was popcorn selling time.  Knowing I’d have to ring someone’s doorbell and ask them to purchase a bucket of popcorn from me would cause me to have a full blown panic attack.  I would do anything to get out of it.  This was going to be much bigger than asking someone to purchase a $3 bucket of popcorn.  Yes, I’m old and that’s probably what it cost back then🙂

So far it’s early in the process and I’m happy to say that we are actually doing quite well.  I say we because it’s not me that’s raising this money but rather a pretty amazing community of people.  I have been beyond moved by the amazing generosity of people in my community.  I have seen that generosity not only in dear friends but also from complete strangers.  The process thus far has been enlightening to say the least.  As expected, it has caused me to have to do things I’m not entirely comfortable doing but with that has also come some unexpected growth.  That is a good thing.  However, all of that isn’t the objective of this post.  One of the things that I firmly believe is that, as with any worthy cause, educating and creating awareness is probably the single most important thing you can do.  If you can bring awareness to something it will eventually lead to unprecedented discoveries.  Through education and awareness it will touch people and cause them to act by sharing their time, talents and resources.

I have been fortunate enough to find MS Runs the US and become part of this year’s team to help raise funds and awareness.  I have met the people behind the organization and they are some of the truest and most genuine people I have the good fortune of knowing.  Ashley Schnieder founded MS Runs the US and actually ran across the country by herself in 2010!  Since then she has created the relay team and in 2016 it will be traversing the country for the 4th time.  Ashley and her husband Aaron are the real deal.  They have a deep passion for this mission and it shows in their actions.  They truly are people driven by their faith and are using their talents and gifts to help rid the world of MS.

Jill and Me

I also was fortunate enough to meet Ashley’s Mom, Jill, when I ran as part of Team Jill at the Brewers Mini marathon this past September.  Jill is Ashley’s inspiration for the relay.  MS has affected Jill in many ways and has stolen much from her but she is undaunted by that.  While we were running she told me that, “God has blessed me with MS.”  Stop reading and let that statement sink in a little bit; “God has blessed me with MS.”  How many of us would be thankful and feel blessed if we had a life altering, disabling disease?  I know there are days when something as minor as a blister on my toe from running will irritate me; and I’m the one that chose to run which caused it!  If only we could all be as convicted and at peace with our own circumstances in life.  The world would surely be a better place.

I was very moved by Jill’s comments that day and to be honest, still am.  Those words have replayed in my mind countless times since that day.  What a testimony of faith.  God has blessed me…  Shouldn’t we all – wouldn’t it be great – if we all could have that attitude and outlook on many of the not only big but even trivial things that we are presented with in our daily lives?  Jill went on to share that if it weren’t for her having MS the relay wouldn’t have been created.  She is glad the relay exists and and hopes it makes a difference in ending MS.

Recently, for one night, actually for just a few hours, I experienced just one of the symptoms that my Mom and so many others with MS experience on a regular, if not daily, basis.  Out of the blue I became very dizzy and couldn’t maintain my balance.  I felt like I was in a fog and no matter what I did I couldn’t make my body do what I wanted it to.  Needless to say, it prevented me from carrying out my plans that evening.  I literally couldn’t function.  It really gave me a new perspective on just one of the many things MS takes away from those it affects; something that I just take for granted.

I am now even more determined to bring awareness and do what I can to help those living with MS and find a cure.  I am in awe and have the utmost respect for my Mom, Jill and anyone suffering from MS.  As part of this journey I plan to share, through this blog, the stories of those living with and affected by MS.  By sharing their challenges as well as their triumphs I hope it helps raise awareness in the fight to help us eradicate this disease.  I will also share how training is going as well as my experience during the week of the relay.  The more I can write and bring awareness to people living with and being affected by MS then maybe, just maybe it will touch someone and help make a difference.  If you or someone you know that has MS wants to share their story please let me know.  I’d like to help you or them do that.  To see how things are going with the relay follow my blog and visit my relay page at www.tinyurl.com/curtfightsms.

Be Great!  Be Strong! Be Determined!

 

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