MS, Do you mind?

When talking about MS symptoms, many know how different and varied these can be with the disease – from the different types that can occur to their various degrees of severity, what affects one person can be very different to another. The symptoms that MS causes can not only have impact on the person experiencing them, but on those around them as well. Certain symptoms can impact relationships and unfortunately, once again, MS acts as if it has complete control over all facets of one’s life, but this is not the case. Not when individuals can do things and make choices to manage these symptoms and work hard to combat them as much as possible. It’s not easy or always a possibility, but MS has to know that it’s getting a fight from the other side and the disease is not always going to be victorious.

One of the MS symptoms that can have direct impact on relationships is issues with sexual dysfunction. This is usually a less talked about symptom and one that many shy away from discussing or disclosing. But it is one that deserves attention and awareness, because many can experience it and it’s important to know they’re not alone in this. It’s bad enough that MS causes symptoms that can impact daily routines, schedule, work habits and other factors, but really—does it also have to come between individuals sexually, in their most private moments and encounters? Come on MS, do you mind?

For those who have experienced these symptoms, one key element to battling MS in this scenario is communication. Again, we know this can be uncomfortable to disclose and openly talk about, but if these symptom issues go unaddressed, the persons involved in the relationship may not know or understand what’s going on, and if not given a chance to learn or be aware of it, it’s hard to move forward and manage with it together. Talking about it with a doctor or counselor can help to create a safe atmosphere to openly discuss what’s going on and brainstorm strategies and ways to help manage it. There can be other ways to help improve intimacy and interaction between each other, but it starts with recognizing the issues that are at play and what’s influencing them, because different factors in MS can attribute to these sexual dysfunction symptoms.

Again, MS may think it dictates everything that occurs in one’s everyday life, but there are some things that it really has no business being a part of…

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Love Your Pet Day

Many people who have pets will admit that they do not need an excuse to give their pet extra attention and a little pampering, but did you know that there is a National Love Your Pet Day coming up on February 20th?

Having a pet or any kind of animal companion can offer a variety of benefits to anyone.  Whether you are cuddling with a furry family member, or confiding your fears and frustrations to an attentive animal, our pets can reduce our stress levels, providing both physical and mental relief.  Who hasn’t come home after a long day with a desire to just say hello to your pet, give them a pat on the head, or a belly rub?  We can vent our frustrations and acknowledge the things that make us nervous and anxious to our pets, without fear of being judged for our thoughts. They support us without ever needing to actually speak back to us.

As some of our My MSAA Community members have said about their pets:

“Gidget is waiting for me every time I come home.  No matter where I’m at she finds me.  She is wagging from head to tail. I swear she knows when I’m sick because she follows me around like my little shadow.”

“My dog Razor has seen me through 5 ops in 5 years, never left my side.”

“My little kitty girl, Tux, is my daytime companion.  She follows me around and sometimes even rides on the back of my chair.  We like to sit in the sun and watch the birds in the trees in the backyard.”

Our pets are often considered an extension of our family and can easily be considered a care partner for many of us when we aren’t feeling our best.  How has your pet been there for you?

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

MSAA is very proud to present our 2016-17 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.

Patricia Heller – Sturgeon Bay, WI
Poppies Reaching for the Sun
Patricia Heller - Poppies Reaching for the Sun

About the Artist:
“Diagnosed ten years ago, my life dramatically changed.

As the years have gone on, I have become better at both watercoloring and handling MS. With painting, I have learned to watch the movement of the water and the paint and capture it to create the images I intend. With MS symptoms, I have learned to listen to what my body is telling me and then use everything I have learned (meditation, relaxation, exercise, stretching, drugs, and best of all, WATERCOLOR PAINTING) to manage MS.””
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Has Your MS Caused You to Embrace the Hermit-Life?

“I make plans, I cancel plans, all in the name of MS.”

“Friends just don’t understand, I’d rather just stay home.”  

MS can be overwhelming in so many ways that most others can’t understand or relate to.  Many individuals with MS find it can be exhausting and tiring to get out and socialize.  The constant forgoing of plans, canceling on activities that you may have looked forward to for weeks because of a flare-up, or the feelings of exhaustion and frustration that come along with your daily MS battles may push you more and more towards a hermit-like life. We recently shared an article with our community from our advocate, Laura, called Has MS Made You a Hermit? The response from our community members was amazing. Here are some highlights from what they said.

“I tend to push people away that want to help, forgetting this is new territory for them too.”

“Regarding help and independence, it’s annoying because OFTEN people want to help me when I DON’T want help, and don’t want to help me when I DO want/need help”

It’s challenging going places and dealing with people who insist on “helping”.  Sometimes, when you go out, others feel the need to constantly try and “help”, when, in actuality, you are capable of doing things on your own.  It just may take a bit longer than others, which is totally okay!  However, it can get taxing to continually try to explain this to others.

“I feel this way a lot, but sites like this keep me going and help me realize I’m not alone.”

“Thank you for speaking out with this piece. Once again, so relieved I’m not the only one.”

Social Media can also be emotionally exhausting on anyone, yet even more draining for those with a chronic condition.  It’s tiring for those that are researching facts and cures and deciphering between lies, truths and half truths.  Social Media can trigger many emotions when reading others comments and situations, and can cause a lot of confusion and frustration.  Conversely though, social media sites and communities like ours can often provide a safe social haven where you can get the social exchange you might occasionally want, without having to leave your home or expend a lot of energy!

“For me, it’s been easier to not go out and talk to people. Fatigue, cognitive problems and the fact that I really don’t enjoy social events that I would have had fun at before…”

“Been easier to hang out with my dog since she doesn’t ask questions.”

“I love my friends and family, but fatigue says I love my bed a tad more. And with Netflix, popcorn, and wine, I can’t say it’s not time well spent…”

At times, going out socially can cause apprehension and overwhelming feelings, as some attempt to go out for a fun social evening, yet try so hard to avoid negative conversations and situations.  It really can set you back and take a toll.  Sometimes you may just want a rest from all the exhaustion that these situations bring.  Especially if you feel like just getting through each day is a chore!

It is completely understandable if you just want or need to to stay in and stay to yourself to avoid the grueling challenges out there.  You know the balance you need, and what your body can and can’t handle.  It’s completely okay to say that a hermit’s life is the life for you when you need to!

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Resolutions…What Resolutions??

Resolutions! We’re winding down the end of month one of 2017…have you stuck to your new years resolutions?? Or have you like most of us slowly fallen off that bandwagon? Every year individuals around the world make promises to themselves or set goals for the new year. Big, small and things in between, we make our lists. I’ve often done this myself and like many come the start of February when someone asks me “Hey how are your New Year’s Resolutions looking?” I look at them and with complete focus reply “Resolutions…what Resolutions?? Oh those silly things”

I’m sure I’m not alone in this idea of looking around at midnight on December 31st and getting caught up in the excitement and coming up with a few dozen things I will definitely do differently in 2017. This year as I watched the clock tick down and 2016 was on it’s way out the time door I decided that instead of vowing to eat better, read more or even save money that instead this year I wouldn’t make a resolution so much as start a conversation…with myself. As the party started to count down, 10…I thought over the past year. 9…The experiences and the problems. 8… I thought about the things that I’d loved about 2016. 7… and those that I didn’t. 6… And then I had a thought. 5… What if in 2017 instead of promising to do things I may or may not actually do. 4… I decided to promise myself something. 3… That this year, in 2017. 2… I would find, explore and do the things that make me happy. 1… My one and only promise/resolution/goal for 2017 was to the take time to really ask myself and listen intently to the answers to what makes me, me. The happy, more positive version of me…0.

So that’s what I’ve been doing this year. Yes I had my “I really should cook instead of running thru the drive thru” moment and gotten up early to do some yoga, or in some cases just have a cup of coffee and watched the sun rise. But not necessarily because I’m trying to be super healthy or save money or anything specific to that. But because cooking and watching a new day start and coffee make me happy. So it may be the end of the first month of 2017 but there is definitely still time to decide not on a resolution per say. But on more of a journey or an exploration…What if you spent some time this year, finding what makes you happy and doing that from time to time not by accident but intentionally. It might be easier to keep than some of the other resolutions we’ve all made.

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2017 Has Arrived

By Lauren Kovacs

It is tough to welcome a new year. Seems like I recently adjusted to it being 2016.  Alas, we must shed the old and embrace the new.  Shake it off.

Like anything with MS, don’t rush. Rushing does nothing good. Slow down.  Ease into 2017.  Take a deep breath and take a baby step into the New Year.

Setting wee goals makes the weight of the New Year manageable.  Don’t make a long list of goals.  Maybe do an extra few reps when exercising.  Doing 13 instead of 10 might be something you can do.  You can maybe add an extra pound to your weights. A few small goals are more realistic.

I know I soaked myself in gluten over Christmas and I never said “no” to Christmas cookies.  I was being polite.  Generally, it was a baked good free-for-all.  If it was within reach, I ate it.  I love candy too.  My daily PT suffered.  This month I am weeding out some gluten and doing part of my PT.

I started my New Year’s goals the day after Christmas.  A tiny bit each day does wonders.  I restarted my laps around the house.  I am trying to do at least one.  I am supposed to do three.  Wade in slowly.  No head first diving into 2017.  The water is cold so, most towel off and never go back in.  Don’t let too many goals shock your system.

I am trying to get off the couch more.  The butt marks on my couch don’t look good.  One of my sons got a real bow and arrow set from Santa.  (target tips) I go out and watch him practice.  I can’t get out there without help, but I am trying.  I am off the couch.

Take your time and slow down.  So what if it takes you longer to tie your shoes or hook you bra?  Rushing leads to frustration.  Slow and steady, as they say.  If you just can’t, after trying, ask for help.  Frustration leads to stress and stress is bad for MS.

In general, MS makes you slow down.  Take your time.  We run a very different race.  If I can shower without losing balance, when standing up to get out, it is a goal I reached. If I can comb my wet hair without smacking myself in the face, I met another goal. Take your time.  2017 is not going any place any time soon.

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Resolutions, Goal Setting and Multiple Sclerosis

By Susan Russo

Every year on January 1st, the first thought to pop into my head is “OK, it’s a new beginning, what do I want to do going forward?”

And every January 1st, I say “Well, absolutely nothing comes to mind.” Except coffee. I need coffee. And eggs and some bacon. So I climb out of bed and meander my way into the kitchen, all the while telling my son “Happy New Year Chris! We made it through another Holiday Season, still intact and none worse for wear.” Still not married, still alone, and still no grand babies for me to raise. Chris just grunts in unison, rolls back over in his bed and drifts back into his safe place. What that is, I don’t dare ask. All I hear is a muffled, low grade growl of “just stop it mom, pleeeeeeaaase!”

As I take my cozy seat at the breakfast table with my favorite blanket, (and, yes, it does get cold enough in winter to use a blanket in Houston) I begin to reminisce on the past few years. “How is my MS doing?” I ask. It answers back with a flush of burning, tingling, a bit of numbness, and a side order of vertigo, reminding me, “Hey girl, I’m still here. Did you forget about me?” And I’m like, “geez, sorry I asked.”

No. I have not forgotten. It’s just in the midst of all my goal setting, you simply slipped my mind.

And that’s just it. The thing about setting goals for the new year…it really is so important. Resolutions allow me to forget about multiple sclerosis, even for just a moment. Thinking of my dreams and aspirations brings me to a happy place. And by the time I finished my toast with jelly, I have a list of a thousand things I want to accomplish. We all know that feeling of elation. Yes, I can learn to swim so my MS will stop burning me, as I splash around in the pool like a halibut. Yes, I will become a world famous artist, move to the Fiji Islands, employ a cabana boy, drink ice tea, and paint until my heart’s content. And eat tons of potato chips. I love potato chips. And maybe have a glass of champagne. Just because I can.

Then, Boom! Reality comes knocking on the door. “You can’t ignore me forever! Let me in or else!” I sigh and take a gulp of my coffee, politely expressing to my reality to “go away, I still have bacon to eat.”

The thing about reality…it’s real and it’s relentless, and it never goes away. So, begrudgingly, I focus. One step at a time. One day at a time. One goal at a time.

  • I will take my Avonex on time each week. (I was tired of my MS injections, so I skipped a few. Don’t tell my doctor.)
  • I will swim 2 to 3 times a week.
  • I will eat healthy foods. (Yeah, like that’s gonna happen.)
  • I won’t pester my son about marriage and babies and wanting a corgi puppy.
  • I will create more art because I am totally talented and people like my work.
  • I will volunteer at the local police department because I have respect for officers of the law. (Actually, I adore a man in uniform, just sayin…)
  • And, I will find a cure for MS! It’s gonna happen people!

My point is this. It’s imperative to set goals, especially when we are in a battle with MS or other dreadful diseases. Unfortunately, they are a part of our lives. We cannot ignore them. So, include them in your dreams and aspirations. Keep it simple. Don’t set goals you know in your heart you won’t keep. Be kind to yourself. Reward yourself. Go see that movie that you’ve been wanting to see.

Remember this. No matter how crazy the world gets, if you have just one goal that gives you a sense of accomplishment, set it and follow through. When you succeed, pat yourself on the back. Smile. You did it. Then set another. And another. Pretty soon, you will find that resolutions can be made and effortlessly (well, you may have to exert some effort) accomplished, not just on the very first day of a new year, but anytime you wish.

The choice is yours. And know this, if you falter with your attempts to better yourself and the world around you, do not dismay. Time keeps coming. Days keep flying by. And January 1st will still be the 1st day of the new year. Always.

Time for resolutions and dreams, with an entree of bacon, eggs, coffee, and more bacon. And perhaps a little grand baby to cuddle.

Heck, I’d settle for the corgi puppy! I’ll name her Isabella.

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Crock Pot Taco Soup

This recipe is one of the easiest soup recipes you’ll ever make in a crock pot.  It is a crowd-pleaser and is wonderful left over too.  On a cold winters day this will surely warm you right up.

Ingredients

  • 1 (15 oz.) can black beans, drained and rinsed
  • 1 (15 oz.) can pinto beans, drained and rinsed
  • 1 (14.5 oz.) can petite diced tomatoes, drained
  • 1 (15.25 oz.) can of corn, drained
  • 2 (14 oz.) cans chicken broth
  • 1 (1 oz.) packet taco seasoning
  • 1 Tablespoon cornstarch + 2 Tablespoons water
  • 1/2 pound lean ground beef (if you prefer to go meatless you do not have to add ground beef)

Instructions

  1. Add all beans, tomatoes, corn, chicken broth and taco seasoning to a large crock pot. Stir to combine. Cook on low heat for 4 hours.
  2. Mix together the cornstarch and water to create a slurry. Add to the soup in crock pot and stir. This will help thicken the soup.
  3. Brown the ground beef in a large skillet until thoroughly cooked. Drain grease. Add beef to crock pot and stir together.
  4. Serve soup warm with shredded cheese, tortilla strips and sour cream.

“We hope you enjoy our Recipe of the Month selections on MS Conversations. Just remember: these entries may not necessarily be a part of an MS-specific diet; these are simply recipes compiled from MSAA staff either from their own family recipe collection or based on recipes we think our audience would enjoy. As always, make sure to consult your doctor about any food or nutrition questions as they relate to your MS.”

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The Benefits of Creating Artwork… It’s More than Just a Pretty Picture!

Each month, we honor an artist from our Art Showcase in our Artist of the Month series.  But have you taken a moment to look through the Art Showcase to see what you’ll find? In addition to a wide variety of beautiful pieces of art, you’ll find personal stories written by the artists. These stories add a whole new dimension to the artwork, allowing you to read about the artist and learn what inspires him or her to create.

In looking through these stories, you’ll find one common theme: In addition to creating a piece of art, the act of doing the art is extremely therapeutic – and this is true whether drawing or painting, as well as crafting, knitting, or throwing a clay pot on a pottery wheel. It often changes one’s outlook and gives individuals a new purpose in life.

These positive effects are exciting to hear and are certainly not limited to MSAA’s Art Showcase! The entire field of art therapy is based on the benefits derived from the creative process and the resulting artwork, and these advantages may be experienced by children, adults of any age, healthy individuals, and individuals with physical, emotional, or psychological challenges.

Numerous studies have been conducted with healthy individuals as well as those with various conditions to examine the positive effects of creating artwork. One small study found that the women with MS who participated in a creative art program experienced significant increases in self-esteem, social support, and self-efficacy to function with MS (self-efficacy is the ability we believe we have to meet challenges and achieve goals). The study also saw a strong effect on hope. The authors concluded that creative art has the potential to enhance the lives of those living with MS.

Another small study conducted in Ireland found that the group of adults with MS who participated in creative classes experienced deep immersion in their artwork, offering respite from worry about their illness. The art-making processes and artwork created increased emotional wellbeing and promoted self-worth, while attending the classes provided an opportunity for social camaraderie and learning. Artwork even helped to support their identity and to accommodate functional losses associated with MS. Participants expressed the feeling that art was “opening new doors” for them.

The American Art Therapy Association at arttherapy.org explains that art therapy is a mental health profession in which art therapists use art media, the creative process, and the resulting artwork to help their clients to explore their feelings and reconcile emotional conflicts. Among other benefits, they note that art therapy can help people to foster self-awareness, manage behavior and addictions, develop social skills, improve reality orientation, reduce anxiety, and increase self-esteem. Anyone interested in learning about art therapy or locating an art therapist in his or her area may visit this website for more information.

It’s important to note that you do not need to work with an art therapist to enjoy the rewards of creating artwork, nor do you need to be an artist or believe you have any “talent” as an artist. While an art therapist may be very helpful to someone who is experiencing emotional or psychological issues, including depression or anxiety… or to someone recovering from an illness or coping with a medical condition… anyone is free to explore his or her creative side… and discover the positive changes associated with creating his or her own works of art!

Another informative resource on the value of art is the Be Brain Fit website. This site was created by two health professionals and cites many published works relating to the benefits derived through art and the creative process. In this section of their website, they explain that creating art is a very effective way to stimulate the brain and that anyone can do it. To follow are a few points from Be Brain Fit, all supporting the positive effects of artwork.

Art relieves stress by enabling you to become totally immersed and providing a distraction for your mind. As you concentrate on details and pay more attention to your environment, it acts like a form of meditation. Many of the new coloring books being marketed to adults were designed with the idea of reducing stress, and have even helped veterans suffering from post-traumatic stress disorder (PTSD).

Art uses both sides of your brain, encourages creative thinking, and enhances problem-solving skills. Art is thought to serve as a type of brain exercise and stimulates communication between various parts of the brain, creating new connections between brain cells. It also boosts self-esteem, provides a sense of accomplishment, and can help children to become better students. Art has even been shown to enhance cognitive abilities and memory for people with serious brain disorders, and has been shown to improve memory in individuals with Alzheimer’s disease or dementia.

Now that you know some of the exciting benefits that art has to offer, this might be a great time to give art a try! You can start with a pencil and paper, a coloring book and pens, a craft kit from the store, paints and brushes, or a scrapbook and glue… whatever you might find to be interesting and fun. You can even enroll in a local art class. The results will surprise you! And who knows? Maybe the next MSAA Art Showcase will feature one of your works!

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Show Your Support on this National Day of Service

Monday, January 16th is observed as a national holiday in honor of a great leader and activist, Dr. Martin Luther King Jr. In addition to being a federal holiday, Martin Luther King Jr. Day is recognized as a national day of service, empowering citizens to give back to their communities and help bring change in a nation so profoundly influenced by the courageous acts of Dr. King.

This day of service encourages our nation to have a “day on, not a day off” and support causes they feel a connection to. This is why MSAA encourages everyone to take part and offer a helping hand to those within the MS community.

There are many ways to give back and help improve lives in the MS community. Here are a few suggestions to help you get started:

  1. Donate your time by creating a fundraising event to benefit MSAA. This could be anything from a bake sale to a bowling tournament!
  2. Participate in Swim for MS – get creative and make your own unique swim challenge!
  3. Make a purchase from a company that supports charitable causes.
  4. Make a monetary contribution.
  5. Love using social media? Become a member of our Street Squad and help spread the word about MSAA!
  6. Perform a random act of kindness for someone in your community.

The hectic holiday season can certainly bring on a lot of stress. Allow this day of service to help you reflect on what you’re grateful for, and how you’d like to assist your community more in the New Year. We thank you for your continued dedication to our mission and hope you enjoy your volunteer work, whatever it may be!

We would love to hear how you are spending your Monday. Let us know what activities and service you are participating in either on our blog or on our Facebook page.

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