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

  1. Colleen Higgins says:

    God Bless you and positive thoughts forever.
    Diagnosed in 1998 and fighting on…

    Liked by 1 person

  2. Linzi pelan says:

    I was diagnosed with relapsing remitting ms last year. I am a paramedic with the NHS. Work had been supportive but not sure what will happen when I relapse. It is a constant worry for me.

    Liked by 1 person

  3. Steffani Fondrk says:

    Thank you for sharing! My daughter was diagnosed last year at 17 with the exact same symptoms!

    Liked by 1 person

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