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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2 Responses to Living with MS – Courageous Risks – Jenn’s Story

  1. Sally Lennard says:

    This is a beautiful story. Jenn is a beautiful young lady who has done so well in spite of the issues she has against her. Keep up the fight and keep encouraging others facing MS.


  2. Marilyn Michels says:

    Awesome Jen I am so proud of you! If you need anything do not hesitate to call me.


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