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It’s okay to not be okay

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When multiple sclerosis becomes part of a person’s life, it comes with one purpose…to steal and destroy. It ransacks the nerves in the Central Nervous System with a ravenous appetite for myelin (the coating around each nerve).

If you didn’t know already, nerves happen to be extremely important to the body. They are what gives us the ability to see, hear, talk, walk, feel, breathe and even blink…basically they control everything a body does.

It seems that no matter how much MS chews and gnaws at the nerves, it is never satisfied. Once it gets a taste of fresh myelin it can’t stop. It just wants more, and more, and more like cookie monster. Om nom nom.

It acts as if it’s at an all-you-can-eat mini bar gobbling up everything in sight while leaving behind a table piled high of dirty plates, silverware and cups. I even tried to trick it by covering everything with hot sauce made with ghost peppers, but it just mockingly licked its lips and kept on munching.

It’s sneaky too, working in the shadows with no remorse or regrets. I’m almost sure I saw it on the top chronic illness most wanted list.

But even though it causes such terrible destruction and chaos wherever it is found, there is one thing it can’t steal from you. It can’t take away the person that you are. Never forget that. You are so much more than MS ever could be. So much more!

I know you have days when MS defines your day and determines your capabilities, but don’t ever let it define who you are. You get to do the defining in that area. And from what I can tell across the miles, wires, online posts and cell phones, you are strong, courageous, brave, and amazing…even when you think quite the opposite to be true.

Hold your head up today, take a deep breath and step out into the world knowing that you are better than MS or any other kind of illness or problem you happen to be facing. Don’t ever underestimate the value of who you are and never, ever, EVER let MS steal your identity. Don’t forget that it’s okay to not be okay.

I face the impossible every day with MS

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I understand how it feels to be drowning in medical bills, strained relationships, physical and mental exhaustion, stressful obligations and a demanding job. Add to that the fact that you’re living every second of your day with multiple sclerosis and you might as well just close the door telling everyone your body’s out of service and you need a break.

You face the impossible every moment of every day and yet somehow as the sun goes down, you always make it. You find yourself climbing into bed feeling beat up, worn out, battered and bruised, but as you lay your head on your pillow and take a moment to look back over the day, you realize that the ninja living inside of you kicked some MS butt.

You pushed through rush hour traffic with your legs and hands cramping up while your head was spinning everything in sight. It felt more like you rode in on a roller coaster than a highway. Then you managed to make it to the bathroom…well, almost. But thankfully you had a change of clothes in your car and no one even noticed that earlier you were wearing a pair of black slacks instead of the blue ones you now have on.

As the day went on you kept making mistake after mistake. You’ve become pretty good at covering those kinds of things up. It takes great skill to stumble over words then turn them into something that makes sense. You’ve mastered the art of word replacement, finger pointing, hand gestures, and usage of the words thingamajig and doohickey.

You even managed to keep from burning down the house after forgetting about the casserole you put in the oven for dinner. Sure, it was a little charred, but you are now an expert as scraping off the burnt parts and still producing something that’s edible.

Today may be an awful day, but it’s not the day you give up even though you have every reason to do so. Instead, it’s the day you push through and remind yourself that if you can make it through the terrible, horrible day you had a few days ago…then you can surely get through today. Let your inner ninja loose.

Hiyah! (jumps in the air and kicks MS in the teeth)

I didn’t choose a life flipped upside down

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Once diagnosed with multiple sclerosis I wanted to do something to help others like me who live day in and day out with an unpredictable life of chaos. I didn’t actually know if the things I had to share would make a difference or even matter, but I knew I needed to try. If not for others, at least for my own sanity and peace of mind.

So, I started writing away even though I was unsure who would actually read what I had to say. I know that sometimes I get serious and real about what things are like for me and others living with MS. Other times I can be a bit goofy. But my hope has always been to help others feel less alone and less scared about living with MS.

I have been amazed at the growth of Positive Living with MS over the years, not just among other MSers but also with caregivers and people dealing with other chronic illnesses. We all have something in common… an unexpected disruption to our lives that has brought about a whirlwind of change, confusion and pain.

I didn’t choose to have my life flipped upside down. I didn’t choose a life of constant struggle because of MS, but it didn’t give me a choice. I didn’t cause it, I can’t control it and I can’t cure it.

Somehow it found me and here I am living in a world that is constantly changing. I don’t want to feel like a failure because of something beyond my control. I refuse to believe it will be because I didn’t fight hard enough.

Like so many others around the world, we research, we dig for answers, we hope, we cry, we even get discouraged. But you know what? No matter how low our emotions get or how bad life becomes, somehow we find the strength to keep going. Somehow we get through one more day. Somehow hope fills our hearts when the weariness grows deep. Somehow. Somehow.

I don’t know how MS really works or why some people have more challenges and difficulties in life than others, but I do know that no matter what you are facing or how hard things get, you are not alone. I am here along with thousands of others around the world to bring encouragement, hope and peace to a broken and chaotic life.

Together we love, help, dream, and live for a better tomorrow. Together we stand arm in arm holding each other up as we swing our swords in battle. What a sightly bunch of warriors we are. Bruised, wobbly, weary, tired… but somehow less afraid of tomorrow.

If you feel sad today, know that you aren’t alone. If you feel you are losing hope, hang on a few more days because the sun will come out and the birds will begin to sing once again.

You are amazingly strong, resilient and a fighter even on your weakest days…especially on your weakest days. Keep standing. Keep hoping for a better day. Keep sharing. Keep fighting.

____________________

Fundraiser for Penelope’s New Powerchair

Give at GoFundMe
Give at Positive Living w/MS

Dealing with negative people

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Everything in the world is filled with so much negativity it’s getting harder and harder to keep a positive focus. Is that even possible any more? I happen to believe it is possible and being positive is doable.

Dealing with negative people can be tricky, but I’ve got a few strategies that might help. First, I try to stay calm and not let their vibe drag me down—easier said than done, I know. Sometimes, I’ll listen to what they’re saying, not to argue, but just to get where they’re coming from. A little empathy can go a long way, even if it’s just a nod or a “yeah, that sounds rough.”

Sometimes, negativity stems from personal struggles or a deeply ingrained habit. Understanding this doesn’t excuse their behavior but can provide context. They might be going through personal issues like stress, health problems, depression, or anxiety; have a pessimistic outlook due to past experiences or upbringing; or even lack self-awareness about how their behavior affects others.

Then there’s the media and social platforms—they thrive on drama. Fear, outrage, and bad news hook us faster than feel-good stories. Algorithms know it, too, so they keep feeding us the heavy stuff. Add in the past few years of pandemics, economic wobbles, political chaos—and it’s like everyone’s got a reason to vent. People also bond over shared complaints; it’s a weird social glue.

Don’t engage in their negativity and do your best to avoid getting pulled into their negative vortex. When it’s too much, I just keep my distance where I can. If their negativity seems to stem from deeper issues like depression or anxiety, gently suggesting professional help could be beneficial. No point in soaking up someone else’s storm if it’s not my weather to handle.

Ensure you take care of your own mental health in the process. Negativity can be contagious, so counteract it with activities that boost your mood, like exercise, reading an encouraging message, singing, or engaging with positive people.

By combining understanding with strategic interaction, you can better manage your exposure to negativity while possibly helping the person see a different perspective over time. Remember, your mental health should always come first, so these strategies are also about protecting your own peace of mind.

What’s your go-to move when you’re stuck with a negativity magnet?

__________

There is a magnificent, beautiful, wonderful painting in front of you! It is intricate, detailed, a painstaking labor of devotion and love! The colors are like no other, they swim and leap, they trickle and embellish! And yet you choose to fixate your eyes on the small fly which has landed on it! Why do you do such a thing? ― C. JoyBell C.

You’ve got this… facing difficult times with MS

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I basically lived outdoors in the summer when I was growing up. My favorite places to go were the park and the local swimming pool. Each day I would walk miles and miles and think nothing of it, after all I was an adventurer and I’m am explorer.

I would visit my friend sometimes while I was out but would dread the walk to her house. To get there, I had to cross through Mr. Rupenthal’s field. Nothing wrong with that other than the fact that he had a horse who didn’t like people much.

I don’t know how, but every time I climbed the fence to start my trip through the field, if that horse was wandering in the field, he would hear me and come charging. I always tried to be really quiet…well, as quiet as a nine-year-old can be when attempting to be sneaky. The horse would chase me to the other side of the field nipping at me as I climbed over the fence to freedom.

I was always glad once I made it through to the other side. There was a sense of accomplishment I felt. Oh, the stories I had to tell once I made it home from my adventures through Mr. Rupenthal’s field. I would tell of the fear I felt and the things I saw, but mostly of the fact that I made it through to the other side.

We go through a lot of things in life, more than just fields of mean horses. If you look back, you have stories to tell of your own adventures in life. Some of those adventures are comical, some sad, some heartbreaking…but all tell of you making it through.

It’s the same with multiple sclerosis. You may be going through a difficult time right now, but the good thing is you are going through. Think back over your life at every difficult time you have faced. You have made it through each one. I’m sure there were moments you weren’t quite sure how or even if you would make it, but here you are as someone who has made it through.

Each person’s story is unique. Each one is filled with adventures and explorations of going through something. Oh, the fear you’ve faced, the uncertainty of whether you would see tomorrow, the scrapes and bruises you’ve experienced along the way, and the tears. The pain that follows is indescribable, misunderstood, and unpredictable.

Last week I went to bed early and woke up a few hours later confused, disoriented, weak and my whole body was trembling. I didn’t even have enough energy to sit up and transfer to my power chair so I could get a drink of water from the kitchen. It was a scary moment for me. I have had tremors that are bad but none that bad. I swallowed a few pills that help me with tremors but did it without a drink. They all went down okay, I tried to rest in hopes that I would wake up stronger. Thankfully I did fall back asleep and woke up with just minimal tremors! That’s a win for me. I make it.

You will get to the other side of the difficult times that you are in right now, and when you do, just think of the stories you will have to tell.  You’re an MS warrior going through…I like the sound of that. You are someone in motion, doing something even if it’s just waiting for the chaos to subside (which is doing something), but regardless you are going through…and tomorrow will be a new day filled with new possibilities. Pause and take a deep breath. You got this.

Multiple sclerosis tried to break me

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Have you ever gone to the beach and taken time to truly examine the seashells that wash onto the beach? Some people are avid shell hunters and spend countless hours searching for the perfect ones. They are looking for beautiful coloration and formation. They don’t even contemplate collecting the broken ones, after all who wants a broken shell sitting on their coffee table?

But then you have people like me who enjoy going to the beach and stumbling across incredible little treasures along the shore. I pick up each shell that stands out to me as the waters ebb and flow over the sand. Some of the shells at first glance look like a perfect creation, yet once I bend down to pick them up, I find them to be a broken treasure instead. Those are my favorite kind and the ones I place in my pocket to take home.

I have a bowl full of broken shells that I have proudly displayed for anyone who comes over to see. Some of those shells are beautiful pieces that could be made into an exquisite piece of jewelry, but most of them are fragile and broken from years of life in rough waters. Some have lost their vibrant color, others have lost their outward beauty, and still others have allowed deposits from the ocean environment to leave a lasting mark on their surface. Each one is broken and yet each one is amazingly beautiful.

Just like those shells, some say that I’m broken. They look at me – at my past mistakes, burdens, heartaches, and even at the fact that I’m living with multiple sclerosis – and all they see are my cracks, scars and the shattered fragments of my life. But the most amazing thing happens when you hold me up to the light. Not only will you see my imperfections, but you will also see what makes me beautiful.

I admit that sometimes it takes everything I’ve got to simply get out of bed in the morning. Many times I don’t want to get up. I wake up before dawn and all the “stuff” I have to do, along with what I haven’t done and the problems that await me, comes crashing down and all I want to do is stay in bed and hide under the covers.

I take a deep breath and gather the strength I need and roll out of bed, sometimes even crawl, to start my day. It’s because of being broken that I am who I am…a battle weary warrior who has overcome much with unimaginable strength, determination and a refusal to give up.

You have cracks, scars and broken areas of your life too. The ups and downs you have experienced are real. Just because you are imperfect and living with a chronic disease doesn’t mean you are worthless. Each one of those things makes you uniquely you. You are not broken…you are a beautiful example of how someone can push through all the junk life throws their way and rise above it shinning brightly. You are not broken…you are beautifully YOU… scars, imperfections, wounds, bruises, cracks, and all.

Life in Scleropolis

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In the heart of the bustling city of Scleropolis, where the sky often mirrored the spectrum of human emotions, lived a community of unique individuals, each bound by a common thread—multiple sclerosis. Here, the disease wasn’t a shadow lurking in the corners of life but a character in its narrative, shaping the city’s culture, architecture, and daily interactions.

Scleropolis was known for its adaptive architecture. Buildings featured ramps with gentle inclines, wide doorways, and floors covered in soft, durable materials to ease the journey of those with mobility challenges. The city center was a mosaic of vibrant colors, with public art installations that celebrated resilience and adaptability.

Our story follows three residents, each with their own tale intertwined with MS:

Mira, the artist, had her hands dance less freely with time, but her vision remained sharp. She pioneered a technique in painting, using eye-tracking technology to create breathtaking murals that adorned the city’s walls. Her latest piece, “The Dance of Nerves,” depicted the erratic yet beautiful patterns of nerve impulses, turning her personal battle into a public celebration of life’s unpredictability.

Leo, once a marathon runner, now navigated life with a cane but had found new purpose as the city’s chief urban planner. His firsthand experience with MS led him to design pathways and parks that not only catered to those with mobility aids but also encouraged community interaction. His project, “The Path of Unity,” was a trail that meandered through Scleropolis, where every bench was a communication hub, and every lamp post bore a plaque with stories of local heroes—many of whom had MS.

Elijah, the tech-guru, had turned his fatigue and cognitive challenges into motivation. He developed an app called “Sclero-Mate,” which not only helped manage medication schedules and symptoms but also connected users to support groups, local events, and even job opportunities tailored for those with fluctuating health conditions. His app became the lifeline for many, fostering a network of support where isolation once thrived.

In Scleropolis, every day was an unspoken festival of human spirit. The city held annual events like the “Walk and Roll,” where everyone, regardless of their mobility, participated in a parade through the city, showcasing inventions, art, and stories. Music filled the air, not just from the bands but from the city’s heartbeat, the collective resilience of its people.

One chilly morning, as the sun pierced through the fog, Mira, Leo, and Elijah met at the “Square of Beginnings,” where a new community center was to be unveiled. This center, a project they all contributed to, was designed to be a hub for creativity, health, and technology, embodying the ethos of Scleropolis.

As they stood there, watching the community gather, a sense of profound connection washed over them. Here, in Scleropolis, MS was not just about the struggles; it was about the stories, the adaptations, and the unyielding human spirit. The city was a testament to living not in spite of MS but with it, turning what many see as a limitation into a canvas of possibilities.

The narrative of Scleropolis was one of inspiration, reminding everyone that life, like the neurons in a human body, can find new pathways, new dances, and new songs to sing, even when the old ones fade.

Comparing yourself to others is a losing battle

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Either way you look at it, comparisons tend to be bad for us. They are bothersome at the very least. From birth our parents start comparing us with other children. Simultaneously, our teachers and coaches compare us with other children. We compare everything and anything these days. We compare our incomes, our houses, cars, children, and yes even our illnesses. In doing so, even if we feel we win in comparison, WE LOSE!

Just as we are all unique and cannot be compared, it is the same with illnesses. There is NO illness worse than another. ALL illness is terrible. When a person compares someone who has multiple sclerosis with someone that has another illness, they are speaking from a lack of understanding and through filtered lenses. No one can know what someone is experiencing unless they crawled into that person’s body to feel what they feel, and experience what they experience.

One of the most awful experiences is when you share your illness with someone and they proceed to tell you how their approach to MS or some other ailment is the only way you should be living? That you need to adjust your diet and get rid of meat, diet soda, and gluten. That because you aren’t living like they say, you are doing it all wrong? That if you only _____ (fill in the blank) you would feel better?

It can get extremely frustrating when someone assumes they know your body and your journey better than you do. Comparing illnesses or even progressions of the same illness between two different people never works out. When someone does the comparing like that, they have fallen victim to comparisons.

The problem with focusing on other people’s achievements is that you will never measure up. It can make you dissatisfied with your own daily activities and even gives you less strength to keep working towards greater things. Comparison is a thief of joy.

Instead of seeing how you measure up to another person, analyze yourself and ask yourself how well you are doing with the things you need to be doing for yourself. The only one we should ever compare ourselves to is ourselves…

Stay focused on your goals and what you want for life. There is only one of YOU in this world, don’t waste time comparing yourself to others. Instead, make your life count. Striving to live a life that is authentic to your own personal goals.

In the process, don’t get caught up in the envy of another person’s successes or goals attained. Envy is the emotion that you experience when someone else has or does something that you wish you could have or do. If another person gets positive results from a medication or a treatment that you wanted, it is natural to feel a jealous twinge. Instead, consider sending a note of congratulations and enjoying their success.

Focusing on gratitude helps, because much of what you’re grateful for involves the people around you… individuals who have looked out for you, mentored you, and cared for you when you were are your worst. That makes gratitude a wonderful antidote to negative comparisons. It reminds you that there are a lot of people around you who are contributing to your success and who love you.

You are loved for who you are. Don’t you ever forget that.

I’m not broken, a burden or an inconvenience

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In today’s world, we are constantly being made to believe that something is wrong with us because we have multiple sclerosis. Those of us using walking aids, wheelchairs and braces for some reason are seen as broken and a burden. We move much too slow, drop things way too easily and need help way too often with even the simplest of tasks for most people to bear. And those with MS who don’t need visible help…the bathroom issues, pain, emotional moments, and memory difficulties are viewed in the same way: as an inconvenience for others.

I can remember when I first started using a cane. I tried to hide it from people. I really did. I would wait until the last moment possible to get my cane in hand in order to walk across the parking lot of the grocery store. I would try to keep it as close to my right leg as possible thinking it would make it less noticeable. It didn’t, but I tried anyway.

The walker was much harder to hide. I felt like I was pushing around a truck with caution signs and flashing lights. “Look at me, here I come! Beep, beep, beep.”

The responses it invoked in people was not always comfortable to handle either. As soon as someone saw me with a walker, the questions began…too many questions, and ones that required exhausting explanations. I wasn’t ashamed of MS, I was simply tired of the constant “What’s wrong with you?” questions met with “I know what you need to do to make MS go away” responses.

Sometimes for me, the easiest response was lying and saying “It’s a football injury.” That was always met with a smile and a nod…even though I’m a girl. What? Sports injuries are more readily acceptable than a chronic illness?

Now that I use a wheelchair, it’s a bit harder to hide my walking difficulties but I’ve also gotten better at handling people’s stares, questions and comments. It still gets to me at times, but I’m okay with most people’s responses. I’ve come to understand that the negative and insensitive comments made by people simply show who they are as a person and has nothing to do with me.

One of the most important things I have learned is that multiple sclerosis has not left me broken. Cracked? Maybe…but I think I was cracked way before MS came along. If anything, it has opened my eyes to seeing the real me and to seeing how broken this world really is.

Yes, it takes me longer to do just about everything from checking the mail, to sweeping the floor, to getting out of bed. But even though I may not be fast at doing things, I can still get to where I’m going. It may take some creativity and some extra help, but I make it every time.

Ultimately, it would be wonderful to live in a world where disabilities took a back seat to who we are as a person. That day will probably never come, but regardless of what the world thinks, I want you to know that you are not broken or a burden.

You are a beautifully patched together work of art covered in scars yet filled with amazing resilience and strength. Your scars display an amazing roadmap of courage. You are not MS, a cane, a wheelchair, or even an emotional mess. You are incredibly you! You are important, needed, and wonderful just the way that you are…and don’t you ever forget it.


“Why Not You?

  • Today, many will awaken with a fresh sense of inspiration. Why not you?
  • Today, many will open their eyes to the beauty that surrounds them. Why not you?
  • Today, many will choose to leave the ghost of yesterday behind and seize the immeasurable power of today. Why not you?
  • Today, many will break through the barriers of the past by looking at the blessings of the present. Why not you?
  • Today, for many the burden of self doubt and insecurity will be lifted by the security and confidence of empowerment. Why not you?
  • Today, many will rise above their believed limitations and make contact with their powerful innate strength. Why not you?
  • Today, many will choose to live in such a manner that they will be a positive role model for their children. Why not you?
  • Today, many will choose to free themselves from the personal imprisonment of their bad habits. Why not you?
  • Today, many will choose to live free of conditions and rules governing their own happiness. Why not you?
  • Today, many will find abundance in simplicity. Why not you?
  • Today, many will be confronted by difficult moral choices and they will choose to do what is right instead of what is beneficial. Why not you?
  • Today, many will decide to no longer sit back with a victim mentality, but to take charge of their lives and make positive changes. Why not you?
  • Today, many will take the action necessary to make a difference. Why not you?
  • Today, many will make the commitment to be a better mother, father, son, daughter, student, teacher, worker, boss, brother, sister, & so much more. Why not you?

Today is a new day!

Many will seize this day.
Many will live it to the fullest.
Why not you?”

― Steve Maraboli

Real life with multiple sclerosis

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As a kid people would ask me, “what do you want to be when you grow up?” My answer would change often, but I would mostly respond with Teacher, Scientist, Minister or Musician. Never once did I even think of saying I want to be a disabled person living with a chronic illness. That was never even a thought.

But now, after multiple sclerosis has come around, life is different. I’m no longer the invincible, untouchable kid I once was. I grew up and life became real.

You may see pictures of me smiling, but the truth is my nights are also spent crying. That’s right, MS isn’t the smiling face you see in those brochures or the victorious athlete crossing the finish line in those advertisements. It’s everyday people like you and me facing weakness, cognitive difficulties, bladder problems, tremors and numb body parts.

  • I want the truth about MS to be seen by the world.
  • I want to hear about people with MS that are facing hell, yet making it.
  • I want to see the daily struggle MSers experience.
  • I want to know about the problems, the large and the small.
  • I want to meet the courageous, the brave, the unstoppable, the true warriors.
  • I want to hear how lives are being lived in spite of a horrible disease.
  • I want the world to know about the sleepless nights MSers face.
  • I want to hear about the embarrassing moments that are endured.
  • I want to know of the emotional chaos MSers go through every single day.

That’s real life with MS.

The world doesn’t need any more brochures covered in rainbows and smiles. Sure, we smile and enjoy life in spite of our disease, but there is a lot hidden behind our smiles that the world needs to know about.

To the advertisers, the drug companies, and the TV producers: Don’t cover up our struggle. We’ve been through too much, come through hell too many times, to have our battle scars hidden away just to make a few people more comfortable with the effects of MS. We aren’t comfortable so they shouldn’t be either.

To the doctors and nurses: remember that MS isn’t easy. That the things you say, the way you help, the care you give really does matter. That just a simple “I’m here to help you any way I can” matters. That listening to our tear filled emotional breakdown really does help. That even though you may feel helpless in coming up with a solution to ease our pain in the short time you see us, we face those same fears and feelings every moment of every day. Please be patient with us, your patients. Sometimes you are the only ones we talk to about what we are going through.

In a perfect world, MS wouldn’t exist. There would be no pain, fears, difficulties or struggles. But we live in a world filled with brokenness. It’s okay to cry, fall apart and actually feel afraid. That’s part of being human. That’s a part of living.

You are a warrior that may be weary in the fight, but even on your worst days you are still fighting. Never doubt, even for a minute, that you are special. You are amazingly special and incredibly important. Hold your head high today. You got this!

Dare to Be
When a new day begins, dare to smile gratefully.
When there is darkness, dare to be the first to shine a light.
When there is injustice, dare to be the first to condemn it.
When something seems difficult, dare to do it anyway.
When life seems to beat you down, dare to fight back.
When there seems to be no hope, dare to find some.
When you’re feeling tired, dare to keep going.
When times are tough, dare to be tougher.
When love hurts you, dare to love again.
When someone is hurting, dare to help them heal.
When another is lost, dare to help them find the way.
When a friend falls, dare to be the first to extend a hand.
When you cross paths with another, dare to make them smile.
When you feel great, dare to help someone else feel great too.
When the day has ended, dare to feel as you’ve done your best.
Dare to be the best you can –
At all times, Dare to be!
― Steve Maraboli