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A new year has begun

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It’s hard to believe that another year is over and a new year has begun. As they say “out with the old, in with the new,” right? It’s a new year, a new day, I have a fresh cup of coffee… same ole body. Hmm, that didn’t go as planned. I guess you can’t have everything you wish for. I tried wishing for a million dollars too but that didn’t work out for me either. I still have the same bills, house payments, piles of dirty laundry and dishes to clean.

I think the new and the old ran into each other and crashed into a pile on my bedroom floor. It even tried pulling me down there the other day. That accounts for the bruises I now have.

As I reflect over the year gone by, I realize I have experienced some truly wonderful, beautiful moments. Times that made me sing even though I can no longer carry a tune. Times that gave me great joy and created memories that I will hold on to for the rest of my life.

It has also been a year filled with pain, weariness and sorrow. Those are the times I wish I could forget but know I won’t because those moments are still a part of who I am. If nothing else, they have made me stronger. And trust me, I need all the strength I can get right about now.

Last year at this time with multiple sclerosis I was struggling with the use of my legs more than I ever thought possible. I couldn’t hold myself up in a standing position without support or use the recumbent bike in my exercise room without using stretchy bands to hold my legs into position by tying them around my calves in order to peddle without my legs flopping off their position. Rehab was my goal to gain further use of my legs.

Although rehab was well worth it and the exercises I learned I still do to this day, my legs never returned to their full function. Does that make me sad? Angry? Fearful? Sure. But I’m not going to let my disability stop me from living even if I do it from my chair shaking my trembling fist in the air at MS.

I know it’s not easy to find the good around you when the tears come so easy, but there is good out there. Being diagnosed with MS isn’t the end of the world so don’t let it ruin your year before it even gets started. There is a light shining through the darkness. And no, it’s not the light of a train barreling down the tracks heading in your direction. It’s hope.

Regardless of everything happening in your world and the weakness you feel in your body, choose to go into today filled with hope. Hope is the very thing that will get you through the struggle and keep you going when everything else around you appears to be falling apart. Hope that in spite of MS you will accomplish great things this year.

I hope for strength.
I hope for less pain.
I hope for laughter.
I hope for understanding.
I hope for pancakes, lots of coffee, and chocolate…definitely chocolate.

Out of everything I could hope for, most of all… I hope for hope.

Think back over last year. I’m sure you’ve had both beautiful and terrible moments. Times that make you still smile to this day and others that bring tears to your eyes. That’s called life… and you lived it. You experienced it. And although your experiences have changed how you do certain things, why you do them and when you do them, they haven’t changed the person that you are. You are still you.

You may live life differently than you have in times past. You may need additional tools to help you get through your day. You may get tired and weaker faster than before. You may even do everything slower. But you… YOU are not your MS.

You are an amazing, beautiful, lovely, awesome, precious, one-of-a-kind, delightfully unique individual. There is no one else in the entire universe like you. You have so much to offer the world, even with a disability. Don’t allow MS the satisfaction of stopping you from enjoying life or even from enjoying today.

As this year begins, choose to be thankful for all the beautiful moments you have waiting for you and choose to use the terrible times of yesterday as bricks to fill in the potholes along the way. I can’t promise you that the new year will be wonderful and void of any pain, but I can promise you that each brick you place along your MS journey, you are building a path that may ease the burdens of those that will come along behind you.

MS may only leave destruction in its path, but you are leaving a legacy of strength, resilience and beauty. You didn’t know you were doing all that, did you? Don’t ever underestimate your value and worth. You are priceless and those bricks… well, they just might be rubies, emeralds and diamonds which only get formed by pressure! You’ve had loads of pressure to build from. I’m proud of you for not giving up.

See you next year…

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The Holidays are upon us and I want to let you know that I will be taking a break for the remainder of the year. Expect my blog posts to restart again early 2026. I will still be sparingly on Facebook and Twitter during this time. You can’t get rid of me entirely. (Grin)

I deserve this break and remember you deserve it too. I will be spending my time…

RELAXING

Regardless of how stressful my day is, I need to take time to de-stress and distance myself from blogging. You’d be amazed at how exhausting putting my thoughts into an understandable written form can be.

CONNECTING WITH OTHERS

I need a little bit of time set aside to spend with family and friends with no pressure to do anything other than just to be. Small talk, times of laughter, no agendas, and no time limits.

ENJOYING UNLIMITED COFFEE BREAKS

Oddly enough caffeine breaks for me are super effective and will be guilt free during this time.

Merry Christmas, Happy Hanukkah and Happy New Year to all.
I’ll see you soon.

Fall down seven times, stand up eight

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Fall down seven times, stand up eight is a famous Proverb that tells how attitude towards failure matters and makes a difference in your life. Don’t get bogged down by your failures but welcome them and keep trying over and over again.

From the moment I get out of bed I make a decision and take action. I figure I’m already standing so if I fall I know that standing is possible. My first stumble, falter or wobble is not considered a failure, but rather the start of my journey.

I tell myself, “You were able to stand once so don’t stop now.” At some point, I lose balance or my legs give out and I fall. I may shed a few tears and get mad at my legs for not cooperating but I muster up the strength to rise up and re-try.

At some point, I lose balance again and fall. It happens over and over again… but each time I keep re-trying. It can be exhausting but I refuse to quit. I may sit down for much of the day but at some point I gather the strength I need to try again. I put my brave face on, take a deep breath and try. I have become a pro at rigging up easy ways to fall without injury.

It’s ok to get angry. It’s ok to be frustrated. MS has this way of making you feel useless and unimportant. Don’t believe the lies it tells you and never quit. Don’t think for a minute that MS has won because it hasn’t.

What will the history books say about you? She was challenged daily with limitations caused by MS but she never gave up or she quit the first chance she had.

You are essential and needed. You have a voice and your voice matters. In every problem or conflict that you find yourself in try to solve it. Ask questions and use your voice.

We are all going to have some stumbles or all-out faceplants along the way in this journey called life. We have a choice; they can make us or break us. The fact is, in this so-called life or journey we are a part of, none of us are getting out of here alive, so we might as well make the best of it while we are here. We can just survive or we can use every opportunity we have to rise up.

Regardless of MS and the troubles it causes keep standing together and rise up each time you fall. You deserve love and are worthy of respect. You got this.

Find your happy

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I was awakened this morning by a bird singing outside my window. Did I say singing? I meant loudly squawking at 4:00 AM without any pauses for air. What in the world is a bird doing up so early in the morning? Are worms even up yet? I think the worms are still asleep, which means this early bird isn’t going to get a worm for a few more hours. It would be nice if he would just go back to bed and let me sleep a little while longer.

What is he so cheerful about anyway? It’s not like he won the lottery or something and needed to let the world know about it. Whatever the reason, he woke up with a song in his heart and he is making sure everyone knows about it.

I had a friend like that. When she woke up in the mornings, she didn’t pause to collect her thoughts or to plan out her day, she was just immediately awake and cheery. It was super annoying too. I don’t wake up well to someone singing,

“Wake up, wake up you sleepy head
Get up, get out of your bed
Cheer up, cheer up the sun is red
Live, love, laugh and be happy”

I would think, “Yeah, you’re going to live, love, laugh and be happy when I whack you upside the head with this toaster.” But you know, I never did hit her with the toaster. I always made it through the morning, and so did the toaster.

I did notice that the song she would be singing, I would eventually be singing too. It wouldn’t happen right away, but eventually I would be eating my cereal and catch myself tapping my foot and humming along. Then, as I would be getting ready for my day, a song would come out. Before you knew it, I would be belting out a song from a movie or singing along with the radio. It’s kind of like when you hear a song in a commercial and you find yourself singing that tune everywhere you go because it somehow got stuck in your head.

Cheerful people can be super annoying in the wee hours of the morning, but you know, no matter how annoying they are, we could learn a lot from someone who wakes up with an instant song in their heart. The world could be crashing in all around us, storms could be blowing, tsunamis could be washing everything away, flood waters could be rising, yet there’s still a song to sing. No one or nothing can take your song away, not even multiple sclerosis. That’s something you own. You and you alone.

So this morning, find your song and sing it. If you need to collect your thoughts first like I do, that’s okay. Take the time you need to wake up fully, but once you are up and at em’, sing…sing your song with all your heart. Cut loose and let out the song that’s hiding deep inside you. And if you can’t find your song today, that’s okay too. Get around someone with a song to share. Before you know it, you will be singing it too. You might even find yourself dancing a step or two. Find your happy!

Are you a real person reading this or just a bot?

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AI is taking over the internet. It’s sad because websites are now built for bots, not humans. Everything I write is inundated with bots that consume the content for who knows what reason. The content is then stripped and regurgitated into other none human writings.

Interaction with people should take place either one on one or with people you know are real because 9 times out of 10 on the internet you are interacting with a bot. A machine that is sent to strip, skim and spit you back out info that has no feeling or charm. The heartfelt post is just pushed aside so the bot can force users elsewhere for their own AI gain.

They consume everything available. The internet is no longer a place for humans. It’s a buffet for bots. The goal is nothing less than total control over not only access to information but also over the selection, creation, and invention of information. While AI scrapes the content, indexes it, and leaves you with crumbs.

This is sad! I think I will leave all social media and restart by living a life with physical, local friends! I’m happier that way. I love feeling needed and being able to actually help real people from the heart. There’s no heart in AI. Just so you know, all the real people online I will still post my funny nonsense posts to give you a smile. That will always be there… bots or not.

Even my fundraiser has stagnated which is really unusual for a fundraiser like mine. To help me raise the money for a new powerchair you can help by giving $10 or $20 today. If everyone did that we could break the internet. Hey, anything is possible. Thanks for giving.

Give at GoFundMe

I lost my brain

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Today I was jolted awake with the thought, “Oh, no…what day is it?” It was a sudden thought. One that I didn’t have time to fully process. My brain just couldn’t seem to work things out on its own. It was as if someone had poured sticky, gooey, hot molasses all over it. At least molasses would have been a valid excuse for the sluggishness I’m experiencing. Having an MS brain isn’t as easily explained.

On days like today when my brain just doesn’t seem to be able to process one single thought properly, I find myself working extra hard to make up for it. I pause while I’m talking to help as I’m searching for the right words to say, I take notes to help keep me on track, I even defer to others so they can finish what I’m trying to say. It’s amazing how extremely exhausting all that is. Thinking to think is hard work.

This morning, I can’t even do that much. This morning is an “I lost my brain” kind of morning.

I can only imagine the person who accidentally stumbles across this weird looking blob called my brain lying somewhere between the mailbox and the bathroom. It’s this strange looking creature full of scars and holes. None of which helps me out. They actually hinder everything I do.

Will they even know what they have found? I hope my brain returns soon because as of right now…all I can do is simply roll over and go back to bed.

I think my brain ran away because it was having to work too many hours and decided it needed a vacation. I wish it would have let me in on its plan though because I would have loved a vacation right about now. Anyone up for a trip to the caribbean?

Understanding my journey with Multiple Sclerosis

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I wear shoes most days. Although I still prefer my barefoot moments, but protecting my feet is way more important these days especially since I don’t have much feeling in them anymore.

Today, my everyday shoes are nice and clean, but that’s only because I don’t actually walk in them anymore. I just wear them as I wheel myself about in my powerchair. They keep me from stubbing my toes or banging my feet into the walls which happens quite often. I actually broke my big toe running into my work station in the garage where I keep all my tools. My hand was tired steering my chair and it seemed to have a mind of its own. Then… B A M.

When I was walking, my everyday shoes were a bit worn and scuffed. I had been many places with them on my feet. If they could talk they would tell of traveling around the world, going to the theatre, spending time with friends, out shopping and visiting beautiful landmarks. I felt unstoppable and on top of the world.

They would also tell of the day I went to the doctors office for tests because I was having a hard time walking, seeing and feeling parts of my face and body. That day was a day of tears, but not the good kind of tears. It was a day I wish I didn’t have to go through, but my shoes were with me and walked me down those sterile hallways at the hospital. They saw my pain and felt my discomfort as a diagnosis of multiple sclerosis was made. If only they could talk.

No one has ever walked in my shoes. I doubt they could fit in them even if they tried. I think my shoes are a little like Cinderella’s… you know, how out of everybody in the kingdom, no one had a foot her size or could fit into her lost shoe. It’s amazing how not even one person could wear her shoe. It was unique to her.

I’ve heard it said that you can’t know someone until you’ve walked a mile in their shoes. People like to throw out opinions of how I should live my life, but in actuality, they don’t know my journey. They haven’t lived my story. When you’ve lived my life only then can you judge me.

Don’t let someone judge your pain or your response to the difficulties in life while standing in their own shoes, not once putting them aside to walk in yours first. They can’t know your pain, sorrow, happiness, joy, depression, heartache, doubts, fears, and laughter. They can’ know your life if they aren’t walking in your shoes. Some people can’t handle the truth let alone tell it. Don’t judge me until you take a hard look in a mirror at yourself. Hopefully it doesn’t break. (Grin)

And besides I gave most of my shoes away when I discovered I could no longer wear them. My high heels… gone. Flip-flops… gone. Even my favorite tennis shoes… gone. All because I needed an AFO brace to help me walk on my own. That journey alone was heartbreaking.

We each have our own journey and our own shoes to wear. When you put your shoes on today, remember how far you’ve come and the miles you’ve been. Each scuff mark is a story of trying. Each smudge is a part of not giving up. Your journey isn’t over… it’s only just begun. So, let’s go forward Warriors.

“No” is not a bad word

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I woke up in tears yesterday. No reason. Nothing bad happened to me in the middle of the night. I didn’t wake up from a nightmare, my goldfish didn’t die and I wasn’t in a lot of unbearable pain. My emotions just went haywire all on their own. I hate when that happens. I take meds to help keep my emotions stabilized, but yesterday’s dose must have been a dud.

Multiple Sclerosis has this way of messing with a person’s emotions. Sometimes there’s a valid reason for the crazy mood swings we experience. Things like the fact that we are dealing with daily challenges and changes in life that sometimes become overwhelming and difficult to handle.

But there are actual times when our emotions get all out of whack for no reason other than the fact that the wiring in our brain is short circuiting and playing around with our emotions. That really happens. MS messes with my ability to walk, think, talk, see, and sometimes it seems to get bored doing all of that and decides to get its awful little hands on how I feel too. It seems nothing is off limits to this monster.

When a friend got to my house for her planned visit, I was sobbing into a sock. (Don’t judge. I didn’t have any tissue nearby so I used what I had. Besides, surprisingly enough socks actually work pretty good as tissues.) Just having her with me helped to calm my tears.

Sometimes someone assuring you that things are going to be okay really does help. Sometimes all we need is a hug, a kind word, a gentle touch, or a hand to hold. Although those things don’t change what’s happening in our life or restructure our brains, they comfort the heart.

I won’t lie to you, life with MS can be tough at times. I go through periods when I simply want to get away from it all…no distractions, no phone calls, no text messages, no people, no MS (now, that one I can’t seem to get away from), no anything. It’s at those times when I will curl up in my comfy overstuffed chair, turn my phone off and do absolutely nothing.

I know it seems impossible to be able to do nothing because even doing nothing is doing something, but somehow I manage to do it. Wait a minute, maybe I really am doing something when I think I’m doing nothing but since my brain scatters my thoughts I forget the something I was supposed to be doing which turns it into nothing. Now there’s a thought to ponder.

When I take the time to get away from the mess that is overtaking my life into a place of solitude, I come back better focused and my emotions calm down. Sometimes it’s takes just 5 minutes of being away to regroup my thoughts. Other times it’s more like 30 minutes, an hour or even a day. But that pause does something magical and helps me to tackle even the hardest of tasks.

I can remember the times when my workload would become intense at my job. The pressure, the stress…it would become overwhelming. When that happened, I would walk away from my desk and lock myself in a bathroom stall down the hall to just pause and breathe. That was the only place I knew I could truly be alone and get away from everyone and everything. Somehow time stood still for me in the bathroom.

I know that sounds weird to some people, but short breaks like that really help. We all need a place where we can get away from the craziness in life and be able to focus on things other than MS, medical bills and the to-do list that never seems to get done.

I sometimes went to my car at lunch time to be alone and would even take a nap to clear my mind. Don’t feel guilty stepping away to take a pause. Take the time you need even if that means telling someone “no.”

If I could reach through the screen to you, I’d hold your hand and remind you of how truly amazing you are. I’d listen to you talk about your struggles, your challenges, your fears, and remind you that no matter what you’re facing, you are strong enough… much stronger than you give yourself credit for. I’d cry with you, make you giggle and let you have my last cookie. (You know you’re special if I share my cookies with you.)

If today is a “cry in your oatmeal” kind of day… go ahead and cry. It’s okay to do that. Let it all out. Then dry your tears and remind yourself that you are a champion, a winner, a warrior. You may not feel like one, but you are and all warriors need a break. Sometimes just a little pause makes a world of difference.

Don’t stop trying to be the best that you can be regardless of MS or whatever else you may be facing. You are stronger than you think. I believe in you. Love yourself enough to set boundaries.

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.

My body has limitations that aren’t negotiable

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Stating my reality is not an excuse. When I tell you I can’t do something or I’m in pain, it’s not an excuse. It’s not a matter of not being positive enough or not trying hard enough. It’s my reality. It’s the truth.

It’s important to understand that being realistic does NOT mean giving up on your dreams. If there is something you really passionately want to do, but it would be challenging, you still may be able to do it if you plan and prepare appropriately.

Consider each activity more by how much you want to do it, or what you are willing to lose or miss out on if you do it, rather than trying to do everything you used to do. You know your body’s limits, and what is or isn’t worth the fight.

Be conservative in your planning at first so you can learn what your limitations and capabilities really are. Be aware that they can change often but you do have every right to push your limits and try to do the things that are important to you. The key part is to figure out what that looks like for you. Sometimes what you think will be super easy can actually be some of the most difficult things you do.

I have gone from being the person who organizes events to someone who is unlikely to have the cognitive space to complete the plans and worse, may pull out at the last minute or even won’t be able to join in on the celebration. Sometimes I am not even strong enough to take a shower in order to make myself presentable. I typically manage a quick text, before sinking back into exhaustion. Holiday times are the worst experiences for me.

An observation I have made is that some of my friends and family have taken this personally and assume that my change in behavior is a reflection of my feelings for them, rather than a symptom of MS which can change from day to day.

I can be so quiet about my struggle that people around me can forget they I’m hurting. This doesn’t mean I’m not having difficulties, it simply means I don’t want to bother them and keep saying the same thing over and over again like a broken record. I just wish my struggle could be better understood by those around me and that my worth wasn’t defined by what I can or can’t do.

This kind of disconnect can cause loneliness to set in which is tough to get through. The magic of human connection, just being seen and heard through the MS struggle, can be a great relief to the loneliness. A real conversation with someone who has taken time to ask and then genuinely listen can be worth more than all the plans and parties combined.

Stay strong for who you are — a person deserving of love. You have so much to offer the world just by being your authentic self. Don’t let self-doubt hold you back from living a meaningful life and embracing moments of joy and connection with others.

I want you to know that you are not a burden. Don’t let those negative thoughts define you. Your challenges or limitations do not make you any less worthy or valuable. There are people who see your strength and resilience in the face of difficulties and are encouraged by it. Focus on surrounding yourself with people who appreciate you for who you are, imperfections and all. Be the reason they feel less like a burden and more like a blessing.

I want you to know there is light ahead, even in your darkest moments. You can get through this. Stay strong and keep your head held high. Happier days are coming!