Stepping Outside My Comfort Zone – A Daughter’s Story

By Rachael Scharett

A father is a very important role in a young girl’s life. I remember growing up thinking that no one was as strong or capable as my dad, Dan Scharett. He worked hard to support our family. He built the house I grew up in and he even came home from work and chopped wood for the wood stove we used for heating. I knew there was nothing my dad couldn’t do. Then, when I was still quite small, the most shocking thing happened; my dad broke his leg while playing softball at a family function. He had been running to a base and when he turned, his one leg didn’t, and it snapped. While everyone else simply thought nothing of it, I cried nonstop. He was a superhero and to see him get injured was something I couldn’t comprehend. What we later learned was that he had been experiencing numbness in his feet and legs which ultimately caused his fall; numbness caused by multiple sclerosis.

As a family, we’ve spent 25 years watching his gradual decline. The man who could do it all slowly lost his ability to chop wood for the wood stove, he couldn’t climb the stairs in the house he built, and now he can’t even stand. Despite this, he still laughs every day. He jokes around with our family, friends and neighbors. He still pushes himself to do things around the house and yard that even the healthiest individuals would hire someone to do. It was his motivation and drive that inspired me to run the Dopey Challenge at the 2018 Walt Disney World Marathon. Seeing him fight to live a fulfilled life despite his MS motivates me to do things I would normally consider too hard. I wanted to run with Team MSAA during this event to help raise money in my dad’s honor, so when I saw the Dopey Challenge, which consists of a 5K, 10K, Half Marathon and Full Marathon, totaling 48.6 miles, I knew I had to choose that event. I am by no means an athletic individual, but if he can push himself every day, then the greatest thing I could do to show my appreciation for all he has done for our family, is to run the furthest and push myself outside of my comfort zone.

I truly hope that one day a cure will be found for MS but until then, organizations like the MSAA are a great resource for families like my own. I am proud to be able to fundraise and contribute to such a wonderful organization…. My dad will be there when I cross the finish line, supporting me, just like he has always done; after all, he is still my superhero.

*Rachael is participating in the Dopey Challenge as a member of Team MSAA during the Walt Disney World® Marathon Weekend presented by Cigna®.  To learn more about Rachael’s run or support Team MSAA, please check out her personal page.

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Creating Relationships with MS

By Laura Kolaczkowski 

When we talk about relationships it’s easy to immediately think of partners, children, and other family members and how our time with them is impacted by our multiple sclerosis.  The twitter hashtag #WeHaveMS rings true because having MS affects everyone in our close family circle.

Then there are other relationships that develop because of our disease – that would include the ongoing contact we have with our care team. Our neurologists, nurses, medical assistances, billing clerks, and everyone else in the MS clinic are people we become familiar with and dependent upon in more than a passing basis, and we develop a long-term relationship with them as well.

As important as our family and our providers are in establishing and maintaining healthy relationships, there is one group that holds more importance than these others – that would be the people who make up the MS community.  People living with MS understand what it’s like to live with this disease, the struggle to make peace with this disease, and how to celebrate and live a full life in spite of this disease.

The relationships I have within the MS community are some of the strongest and most important in helping me to live in a positive way, despite having MS.  I’m fortunate to have made friends, thanks to my MS, who are usually available at any time to stop what they are doing to take my phone call or answer an email.

Many of these friends I have never met in person, but we have that common bond of living with MS that cement our relationships.  More than once my family has looked at me as if I’ve forgotten all the warnings of “stranger danger” and the internet safety while I’ve forged new friendships and comfortable relationships with total strangers.

Being alone with a chronic disease, and particularly with MS, can be bad for us psychologically and often even our physical health can suffer. Creating relationships with others who also happen to live with MS gives us strength in many ways that can’t be measured but is felt deeply. If you don’t already have a special relationship with another person who has MS, I strongly encourage you to join a local support group, an online forum, or even one of the many Facebook groups that focus on multiple sclerosis. Lasting relationships might not develop quickly because those have to be tested over time, but stick with it and I have no doubt you will connect with people of kindred spirit.

*Laura Kolaczkowski was diagnosed with MS in 2008.  She is the co-principal investigator for iConquerMS and the lead patient representative. Her interests have taken her into the world of patient centered research, which is meant to deliver answers that are meaningful to the MS community. She is medically retired from the University of Dayton thanks to her MS, and lives with her husband in Ohio.  She invites you all to join iConquerMS and help solve the mystery of MS.

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Tri-Color Pasta Salad

As summer is coming to an end, I thought I would share a family recipe for Tri-Color Pasta Salad.  You can eat this dish as a meal or a side dish.  It only takes about 15 minutes to prepare and is always a hit. You can add extra vegetables, cheese, or even pepperoni to make it your own.

This could be the perfect pasta salad for your Labor Day!

Ingredients

  • 12 oz box tricolor pasta
  • ½ cup black olives, sliced
  • ¼ cup red onion, chopped
  • ½ cup red pepper, diced
  • ¾ cup cherry tomatoes, sliced
  • ¾ cup cucumber, diced
  • 1 cup reduced-fat Italian dressing
  • ½ tsp salt
  • ½ tsp pepper

Instructions

  1. Bring a large pot of water to a boil and cook pasta according to package.
  2. Drain pasta and let cool.
  3. In a large bowl mix pasta, red pepper, red onion, cucumber, cherry tomatoes and black olives.
  4. Add 1 cup of Italian dressing to pasta and gently mix all ingredients together.
  5. Chill pasta before serving.

Enjoy!

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Keep it Romantic

By Lauren Kovacs

I am, by no means, an expert on romance or dating. MS is more fact. It does not have bubble shaped hearts floating around. More of a mean Cupid thing.

I married a guy from my church. We met at 17 years old. I was not officially diagnosed until I was 21, but had symptoms at 16. I was the little blonde cheerleader and he was the big high school jock (different schools).

High school sweethearts. Let me barf, I know.

I did well early on. MS did not stop me. MS behaved for the most part the first 15 years.  MS lived with US and not the other way around.

My husband knew the heat and fatigue were issues. I was active with our three sons and did Irish dance, clogging, and figure skating. I only stopped because of pregnancy. MS was locked up back then.

Fast forward. My youngest was in preschool and things began to change. I opened up to him and it was just too much. His active wife was starting her descent. The MS pit is dark for everyone.

Work and family life were a lot for him. Dumping my MS garbage on him was not working.  I clamped up and bottled it. Not smart. There was only so much room in the bottle. It held evil MS air and not some wonderful magic genie.

Fast forward again. The youngest is 7 and the pressure in the bottle starts to leak. I can’t handle it. I knew I could not unleash on my husband. I really needed help. The talk therapist helped a lot.

Now, I can hardly walk. He knows I can no longer write, sew or paint. He and my sons know I need to be near a potty at all times. He sees me struggle. We don’t really play “what if.” We are mostly one day at a time.

I read books and took the marriage personality test. I had taken a similar test when we did our marriage classes. I knew I needed to dump on someone other than him.

He came to his acceptance of MS on his own terms, in his own time. Like most MSers, acceptance comes in time. I am so very blessed. Lots of MSer’s spouses bail. Pressure comes from all directions with MS. Many relationships require slow tweaking when MS is the 3rd wheel in a relationship.

Step into the other person’s shoes. What if you watched your spouse’s slow decline.  It does take a very special person. MSers are special and they deserve a special person.

A disinterested third party is key to keeping the flame lit and keeping the wheels running smoothly.

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The Not So Good Relationship

Keeping with the theme of relationships on this month’s blog inspired me to do a little Googling into different relationship topics and recent news to see what’s been trending lately. I actually found several pieces on toxic relationships and help in how to recognize these. Usually when people think about relationships the mind doesn’t tend to go towards the dark side necessarily, but the truth is there can be a lot of toxic parts to a relationship that some people don’t even notice sometimes. Often, people believe their relationships look like other’s relationships; everyone has their ups and downs and not-so-fluffy cloudlike days and this is normal. This is true, but when the relationship is in that darker side of the clouds more often than not, it’s something to address.

Psychology Today recently posted about how to recognize toxic people and relationships, and it’s not always easy. In a relationship, sometimes the people involved have blinders on in order to see what they want or need to see in the other person; it’s only natural. Everyone has flaws and no one is perfect, but there are some toxic traits that can’t and shouldn’t be overlooked. Things like selfishness, disrespect, and arrogance are all signs that point towards a potentially harmful toxic relationship. The post also mentions these other red flags as potential signs of a toxic bond:

  • Lying
  • Being unapologetic
  • Manipulative
  • Abusive
  • Narcissistic
  • Spiteful

Examining one’s relationship and trying to recognize red flags is not easy. It can be overwhelming and sometimes shocking to realize that the relationship is causing more harm than good and if it’s contributing to stress and negativity. Sometimes these bonds are ones that can’t be severed so easily either, especially if they’re with family and loved ones. This is why it’s so important to surround yourself with positive energy and loving relationships whenever possible, and taking a step back from the ones that aren’t is sometimes necessary. Reaching out to others for support, seeking therapy, taking time for self-care and self-love are actions that can help combat toxicity. Everyone deserves to be respected and to be in relationships that nurture love and support; anything else is unnecessary distress.

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My MSAA Community – One Year Later

It has officially been one year since MSAA launched its online peer-to-peer forum, My MSAA Community!  This virtual community (powered by HealthUnlocked) has allowed individuals living with MS and their care partners and families the opportunity to share their experiences, discuss a variety of topics, and support others in a friendly and safe environment.  Community members are able to connect with other people affected by MS, contribute to ongoing conversations, or start their own conversation asking for advice or sharing their journey.

Here are just a few of the ongoing conversations being discussed on My MSAA Community:

Commemorate this milestone with us by contributing to these conversations or start your own by joining My MSAA Community!

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Someone Has to be Excited…

In talking about relationships this month on the blog it’s impossible not to think of the bonds I have with the people in my life and how impactful they are in shaping who I am, and in turn, what I am to others.  Sometimes we don’t realize how much we’re touched and influenced by other people. But all it can take is just one conversation, one tiny fraction of an entire day to make an impression on someone else. I had an occasion recently that I wasn’t really feeling up to celebrating much. My husband on the other hand, was very happy and wanted to share his elation; he has a special knack for being positive and optimistic. His exact words were “someone has to be excited for you.”  The sentiment didn’t resonate in that precise moment but afterwards it was all I could think about. That this man knew that I wasn’t able to feel joy in that particular moment but still wanted to mark the occasion and celebrate for me. That is a remarkable relationship trait.

There are going to be times when a day is gloomy, a mood is sour, or chaos arises. It’s a roll of the dice sometimes in how a day will play out — but what matters is who is there with you at the end of that day, being your cheerleader and light in the darkness. It’s difficult trying to be happy and positive 24/7, we’re only human; it’s part of our wiring to experience other moods and emotions. But if you have or can find that other person who can champion for you when you can’t for yourself, find gratitude in that because it’s a truly special trait. Being your own champion is of course ideal, but in those moments where this isn’t possible, having that piece in your relationship with someone else is truly significant.

Unfortunately many people experience toxic relationships that are one-sided and selfish where the other person wouldn’t think to imitate this selfless behavior. That is why self-love and self-respect are necessary in your pursuit of finding relationships that will help foster encouraging aspects and positively influence you. You deserve to be loved and supported and knowing this makes all the difference in what you want or are looking for in others. Being that hopeful light for someone else and having them be the same for you when needed signifies a healthy bond; and a relationship where one person can be excited for the other if and when they can’t be for themselves.

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Relationship Questions I’ll Ask Now That I Live With A Chronic Illness

By Stacie Prada

Here’s the hard thing about relationships when you have a chronic illness.  At any given time we’re at a certain place in how we feel about our lives and health, and we hope that those close to us can understand and be there with us.  And it doesn’t always happen for our spouses, family members and friends when we need them. They aren’t always able to trust us and be dependable for us when we need them. They aren’t always able to promise or have the ability to be there for us for what we think may be in store for us.

These are good people that have been through tragedies and life hardships before. But sometimes something that isn’t temporary, isn’t going to get any better, and is most likely to get worse is beyond what they can handle.

We don’t sign up for being sick. They don’t either.  The difference is they have a choice. And I’m grateful that it became clear before I desperately needed anyone that the relationship I was in wasn’t one that would support me in my probable decline.

I want to be wanted, not an obligation or sacrifice.  I see other relationships where people get together after one of them has been diagnosed with MS. I’ve seen how they treat each other, and it’s shown me that it’s possible to have a relationship where hardship exists and it’s not perceived as a burden. The hard things that need to be done are treated as things people do because they love and respect each other.

I don’t want a caretaker. I want a partner. I want someone who will do things for me because they want to, not because they feel obligated. If someone isn’t up for it, the biggest gift they can give is to admit it and bow out.

I cringe when I see articles and comments describing friends, marriages and bodies as not “real.”  My marriage was real. And it was good, really good for a while. We were strong and there for each other for a lot of excruciatingly hard times beyond our control. But dealing with what happens and staying around for what might likely come are different things.

For me I realized it wasn’t about whether someone would have me with my chronic illness, the question was whether I wanted them around for my future and helping me with my chronic illness. As I embark on a new relationship someday, I think the questions I’ll want to know the answer to are different and more specific than the first time I married. They extend beyond whether we want children and envision our futures and beliefs align. These are the questions I’ve compiled so far that for me capture relationship traits important for living well with MS:

  1. Can you be gentle and respectful to me when my health inconveniences you?
  2. Can you respect and appreciate me if it gets messy?
  3. Do I like how you treat me when I’m sick or not doing well?
  4. Do you continue to treat me as a partner when taking care of me?
  5. Are you there for me when I need you? Are you accessible? Do you respond to my texts or calls in a timely manner?
  6. Are you there for me because you don’t want to be the bad person or because you want to be with me?
  7. Will you go to doctor appointments with me and share my experience?
  8. Will you do things for me even if they don’t seem like a big deal to you but you know they’re important to me?
  9. How resilient are you? How do you handle stress?
  10. Will how I treat you be enough for you? Will you think being with me is worth the effort it takes?

These questions are reciprocal. Just because I know I have an incurable chronic illness, it doesn’t mean that my partner won’t need the same from me at some point. Nothing is certain, but hopefully building relationships that support unknown futures may be possible.

*Stacie Prada was diagnosed with RRMS in 2008 at the age of 38.  Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/

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Relationships are…

Dear No One,

Relationships are tough. I mean, I know I’m stating the absolute obvious to you when I say that, but just hear me out. We too often think of relationships in terms of just those we date or are romantically attached to. But relationships are more than that. We have relationships with our family members, our friends – hey even total strangers we strike up a conversation with on a train platform. And they all can be taxing and draining, hard to navigate and at times annoying. They can be stressful and expensive and not just in terms of money but in emotional investment and mental space. If I’m being honest, people can be the worst. I mean really, look around and you’ll find plenty of examples of reasons why we should not like people. Just look at what they do to each other and you aren’t immune if you know someone. People can hurt the people we know just as much if not more than the people we don’t. You see what I mean, relationships… they’re totally insane!

But then things happen like the other day when it was raining and I stopped at a light and I was annoyed by the day and by the rain and by just everything and I caught out of the passenger window a woman walk up to someone on a bus stop and offer for them to share their umbrella. Just out of the blue walked and stood near them and the person, startled by the sudden end to rain pouring onto their head looked up and then over and with a look of bewilderment cracked a nervous smile and tilted their head. And the woman smiled and the light turned green.  Or when I went for a hike not far from my house yesterday evening and saw a dad picking his teary kid up off the unsteady hiking path. Just lift them up into his arms and as sure as the grass is green and the river moving told them that everything was going to be alright, they just took a little stumble. Things sometimes happen like the police officer who is called to a house to investigate a possible concern and ends up comforting a little boy who’s all alone or a teacher who has struggled to get a new student to be respectful and listen, gets an email from a foster mom saying thank you and that she’s seen a big difference at home even if there hasn’t been a big difference in class.

Relationships are tough. They’re messy and difficult. They’re taxing and at times confusing. They take a lot of energy and effort and thought. You spend time worrying if what you said was too much or too little, if you are being too intrusive or too standoffish. You rack your brain with what if they don’t understand or don’t laugh or don’t come back. And all of those are possibilities that we face and can leave little pieces of us chipped off. But being in relationships also make us richer, fuller and more colorful. They make us smile and laugh and become more caring. They make us understand and see things differently and open up. They’re tough, don’t get me wrong, but they’re also worth it. They’re worth saying Hi to the person you meet at the airport and worth smiling and asking how they are doing of the cashier at the grocery store. They’re worth reaching out to people we’ve been thinking about and worth letting those in who we’d otherwise keep at arms length. They’re worth replying to the community post someone started about feeling alone and worth getting into even if it doesn’t end the way you’d hoped. Relationships are worth it and I guess since they are…maybe people aren’t so bad after all.

Affectionately,

Me

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August 2017 Artist of the Month: Celebrating the Work of Artists Affected by Multiple Sclerosis

MSAA is very proud to present our 2017-18 Art Showcase – celebrating the work of artists affected by multiple sclerosis (MS).

We have received many wonderful submissions from across the country and are delighted to share their work and their stories with you. Please visit our online gallery to view all of the new submissions.

Rhena Hall – Little Rock, AR
Summer Sunshine Rose
Rhena Hall - Summer Sunshine Rose

About the Artist:
“I was diagnosed with multiple sclerosis in December 1981.

I have been struggling with dizziness and complete exhaustion for an hour, then I recover for maybe 30 minutes then tiredness starts in again. This is a lifelong struggle and I will not accept defeat. Medicine is now making my goal possible. Had to retire at 37 years and have been in a wheelchair briefly, crutches, now cane. Exercise daily…classic stretch. Too busy to give in to MS.”
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