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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