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The day my world tilted

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I once was able to do things others could do without any problems. I would hike through the woods just to clear my head when I needed a break from a busy life. I was able to juggle work plans, family life and weekend adventures without a second thought.

Then came the day my world tilted. It started small: a numbness in my face and hands that wouldn’t wake up, double vision that turned reading into a guessing game, and fatigue so heavy it felt like wearing a lead suit. Doctors confirmed what I feared — multiple sclerosis. The diagnosis hit like a storm, washing away the “normal” life I knew.

The early battles were brutal. Relapses came without warning. One day, I couldn’t walk without a cane; the next day, MS stole my strength to hold a coffee cup steady. Mornings became wars against an uncooperative body — legs that refused to cooperate, a brain fog that turned simple math into rocket science, and exhaustion that made even laughter feel impossible.

There were nights when tears soaked the pillow, when the question “Why me?” echoed unanswered. Friends drifted, work accommodations felt like defeat, and the mirror showed a stranger fighting to recognize my own reflection.

But I refused to let MS write the entire story. Small victories showed up. The first big win came quietly: discovering adaptation was one of the first. When life became too exhausting full-time, I pivoted to online writing about life with MS. The keyboard became a weapon of hope. Posting online honestly about the bad days, the ugly fatigue, and the frustrations helped me to come to terms with what was happening. But it always ended with one truth: “I’m still here, still fighting, still finding joy.”

I was giving people permission to rest without guilt or laugh because my story was a bit comical at times. Physical battles turned into creative ones.

When walking was no longer possible, I found adaptive cycling. With a recumbent bike I could quietly ride in the quiet of my home and it kept my muscles moving.

When my hands trembled too much for detailed art work, I switched to digital work using photoshop which helped against the gray days that showed up. Every finished piece of art was a banner: MS may limit me, but it doesn’t erase creativity.

Emotional victories stacked up too. I learned to say “no” without apology, to ask for help without shame, and to celebrate tiny wins like getting dressed without needing a nap afterward. MS taught me humility, patience, and the fierce value of real friends who stayed through the hard seasons. It revealed inner strength I never knew existed, the kind forged in fire and unbreakable.

Today I can stand with the help of technology using a sit to stand machine and it gives me great hope, not because the disease is gone, it’s still here unpredictable as ever, but because I’m proving life with MS isn’t about waiting for the storm to pass; it’s about learning to dance in the rain, even when the steps are uneven.

Most people don’t realize the battles continue. Some days are still heavy, still unfair. But the victories? They’re real, they’re accumulating, and they’re proof that courage isn’t the absence of fear or struggle. It’s showing up to fight another round, finding light in the cracks, and refusing to let MS define the whole story.

If you’re in the thick of your own MS battles right now, know this: every morning you open your eyes and keep going is a victory. Every time you adapt, rest, advocate, connect, or simply smile through tears… you win. You’re not just surviving, you’re rewriting what strength looks like.

You’ve got this. One day, one step, one breath at a time.

 

I’m needing help for the annual website costs of Positive Living With MS. The journey that led me here was anything but ordinary. Diagnosed with Primary Progressive MS in 2013, I often felt like a lone ship adrift in an ocean without landmarks or guides. But then came you—the readers who reached out through messages and comments. Your voices were the lifeline we clung to when waves of fatigue threatened to pull me under. 🚣‍♀️

And so began my quest: to share not just my personal battles with MS but also the victories, however small they might seem in the grand scheme of things. I write about days that start early and end late, filled with the monotony of pills and doctor’s appointments, punctuated by moments of sheer joy as we find laughter within our limitations. 😄

That’s why today, I stand before you—the generous souls who have made these pages their solace from pain—asking a simple favor: to keep the light on. Whether it’s $5 or $50, every bit counts towards keeping our beacon of positivity shining brightly and helping me answer the calls for support that come in at all hours. 💌

Your donation isn’t just money; it’s an investment—an assurance that those who need a word of encouragement won’t be left searching when darkness threatens to creep back into their rooms. And honestly, knowing you are out there rooting for us makes the fight worthwhile each morning I wake up with MS. 🌞

So let’s keep turning these pages together. Let’s continue laughing through tears and finding reasons in our own stories to believe that hope can be a daily visitor even when life gives more than its fair share of challenges. 🙏

With heartfelt gratitude, I thank you from the depths of my soul for considering this plea for help. Your support is not just financial; it’s a promise kept—a commitment to continue being there in moments of joy as much as we have been during heartaches. 💖

P.S: If what I’ve shared resonates with you, won’t you please share this story? Let’s bring more light into the lives of those navigating through dark times—just one click could make all the difference in our community’s journey to positive living! 🙏💛 #KeepTheLightOn

Show your support by going to this link

 

I will never sugar coat my life with MS

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Have you ever had one of those days when you wished you could just curl up into a ball and hide away under the covers in bed because life was simply too much, too crazy and too overwhelming to bear? That was me yesterday. I woke up in tears… literally. That happens to me from time to time, only yesterday it hit me really hard. Harder than usual.

I hate when that happens. Sometimes no matter how hard I try to remain upbeat, positive and steadfast, I fail. It just goes to show that even people like me who strive to find the good in everything around them actually have times when they wish their out of control life could be put on hold and the pain had a pause button.

I’m human and I’m real. I will never sugar coat the difficulties of living with multiple sclerosis and I never want people to think that MS is a breeze to manage. Too many people out in the public don’t hear of the struggles we go through because too many MSers don’t talk enough about the truth of living with a chronic disease.

I am thankful for those living with minimal symptoms and that can handle the pain with ease at any given moment whether it be physical or emotional. But I know for a fact that’s not me. I talk about the struggles I face because I believe the more the public is made aware of what we experience, the more they will come to understand the reasons we have our unpredictable mood swings, cancel seemingly simple plans and spend so much of our time at home.

It’s not always easy for me to voice my needs. That’s because many times I don’t even know what I need in the first place. So when someone calls or stops by and asks how they can help out, I don’t always have an answer. It’s not because I’m being rude, antisocial or don’t want their help. Most of the time it’s because I simply can’t see past the pain in the moment to know what I truly need. That kind of thing requires too much thought and most of the time my brain just blanks out.

But I can tell you this, what ALWAYS helps is genuine care, concern, support and love. Those things help at any given moment and can be expressed through a simple “thinking of you” text, help around the house, offering to pick up some groceries, or just stopping by for a chat.

My greatest fear is to be forgotten in this fast paced, on-the-go world. It’s easy for that to happen too because many of us get to a place where socializing becomes extremely stressful and is filled with too many uncertainties and obstacles.

Getting out of the house requires great planning and considerations that many people don’t really think about. Will the place I’m going to be accessible for my needs? Will I have quick access to a bathroom when needed? Will I be in a place where I can remain cool? If a meal is involved, will someone be there to help me cut my food? If I get too tired (which is normally a given in my case), can I leave early? Does it cost because I live on a limited budget and even small expenditures are impossible to afford?

Any number of questions have to be considered in order to leave the house. Some days those questions are easy to answer, other times they are simply too much to face.

I woke up yesterday with my laugh-box broken because the questions in life smacked me in the face as soon as I woke up. If that ever happens to you, give yourself a break and allow yourself the needed time to grieve. Grieving is a real part of living with MS, and it’s okay to have those moments. Just try not to stay there.

I had my good cry already yesterday. The world may never see my tears, but they will always hear my pain. I refuse to be silent in the struggle.

Multiple sclerosis is not a death sentence

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I think we all go through a stage at the beginning of being diagnosed with multiple sclerosis where we think life as we know it has ended. I used to tell people that MS is just two letters in the alphabet, it’s not a sentence! Sounds good to say but when you get a closer look at it by living with it, that kind of thinking changes.

As time went on I thought of it as more of a death sentence than simply 2 letters because it seemed to be the death of everything I knew. My mobility, my ability to feel and function in a regular capacity, the decline in my cognitive function, just so many changes to my bodily usage had decreased and caused me tremendous difficulties. So much so that I felt less human than anything else.

And with my bodies ability becoming so much worse it was more of a death sentence to me than anything else… yet when looking at all that I have endured I don’t see it as a death sentence at all. It more of a faster path to death but not a sentence. Life still happens and there are still moments of happiness and joy in the process.

You can be happy, even in a “broken” body. It may not seem like it now, but the truth is that you can build a happy, meaningful life for yourself, even if you’re never able to walk, hear, or even see like you used to.

It goes without saying that your disability has already changed your life in big ways. But with commitment, creativity, and a willingness to do things differently, you can reduce the impact your disability has on your life.

While you can’t go back in time to a healthier you or wish away your limitations, you can change the way you think about and cope with your disability. You are still in control of your life and there are many ways to improve your independence, sense of empowerment, and outlook. No matter your disability, it’s entirely possible to overcome the challenges you face and enjoy a full—and fulfilling—life.

Don’t let MS control you, you be the one in control. You’ve got this!

Never regret… today’s a chance at living

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I woke up this morning, made my way to the closet to get dressed and the first thought that popped into my head was “Ugh, another day with multiple sclerosis.” As soon as that thought showed up I knew it wasn’t a wonderful cheery thing to be thinking. But hey, I’m human and thoughts like that happen.

The day hadn’t even officially begun and I was already thinking about how my powerchair has become my best friend rather than a pair of running shoes even though my new powerchair has yet to arrive. I also thought about the pile of dirty clothes that needs to be washed and yet how I have zero energy to load the washing machine to even get the first load started. About how much pain my body is in every second of every day. About how extra hard everything in life seems to be now from putting on my socks, to brushing my teeth, to filling up the gas tank in my van, to buying toilet paper.

We all have moments when thoughts like that appear. Thoughts that we really don’t want to be thinking but show up anyway. I know I’m not the only one waking up wishing that MS didn’t exist and having a woe-is-me morning.

As I pondered my dreary, self-focused morning thoughts I realized fairly quickly that I needed to adjust my thinking. Today, this very day that I woke up to dreading, is someone else’s chance at living. How can I throw that away? How can I waste 24 hours – time that I can never get back – choosing to fill it with sadness and regrets.

This day called today… the day that I woke up to feeling exhausted and disappointed in because of MS. Yes, this very day is a blessing to someone else. All of those things I woke up dreading are seen as a blessing in someone else’s world.

There are people today thankful for the chance to fix things they messed up yesterday, thankful to spend one more day with their family and friends, thankful for the pain they have to endure because it simply means they are alive, thankful for an opportunity to see a doctor even if that means they have to travel hundreds of miles to get there, thankful to have a wheelchair even if it’s second-hand, worn out and falling apart.

I can choose to be one of those grateful, thankful people or decide to waste away my day on regrets and sorrows. And so can you.

How about I start things over?

Good morning, sunshine…today is a new day. It’s a chance to do something great. It’s an opportunity to truly live and make a difference. There is only one today and each second of it is precious.

Don’t waste the day pondering regrets and sorrows from your woulda, coulda, shoulda thoughts. Invest your time into the lives of those around you and into yourself as well. It’s worth it. You’re worth it.

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 can’t get any air

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I almost choked on my own saliva Monday. It was a scary experience. I was sitting on the couch listening to some music and just swallowed. Nothing unusual. Just a simple swallow, but it turned out to be a truly terrible moment.

When I swallowed it seemed to go down the wrong way then I couldn’t get my throat muscles to cooperate. I was unable to catch my breath in the process. A few minutes went by as I struggled to breathe. I leaned forward, raise my arms hoping it would help, tried to massage my throat even turned my small fan on sitting beside my seat but my throat was spasming and nothing seemed to work in resolving the issue. I felt like I was chocking.

By the time I was able to catch my breath I had tears streaming down my face and I was weakly coughing in an attempt to clear my throat. My throat was still spasming. I felt hopeless. I was unable to speak for at least 30 minutes. All I could do was pray, cry and hope for a clear airway to stay.

Those are the times I truly dread and most people don’t even talk about them. I have yet to find a solution aside from making sure I’m sitting up, not reclining. Reclining seems to make it worse. I’m thankful those times don’t happen often but they do happen enough to warrant concern.

I want you to know that you aren’t alone in the struggle. Of course there are countless other struggles we face on a daily basis but all can be overcome with a little bit of patience and hard work. Don’t lose heart when they happen.

Today I’m breathing better and believing for a good day ahead. Believing the same for you too. It’s going to be a good day!

I wake up each morning ready for a nap

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I can remember a time in my life when I would stay awake for days just because I could. I pulled all-nighters at least twice a week for no real reason using the time to spend with friends, hang out at Steak ‘n Shake (the only restaurant in town open all night), and watch reruns of Doctor Who. Life was simple then.

I think sleep is paying me back now for all those hours we missed together. I find myself waking up in the morning ready to take a nap, and then when I do nap, I’m ready for another nap as soon as I get up from that one. It’s a weird and crazy cycle…sleeping to sleep.

As a kid I was always told we needed at least 8 hours of productive sleep. Lately, I’m lucky to get 8 hours productive awake time. I have been known to fall asleep in some of the oddest places too: at the dinner table as my head slowly drops into my plate of food (I haven’t done that in a while though), at the bookstore as I’m chillin’ in my chair skimming through a book, and even on the toilet just doing…well, you know.

My eyes will get heavy and I find myself thinking, “I just need to shut my eyes for a second.” But as soon as they shut I am instantly transported to another world. It’s a wonderful world, a place where multiple sclerosis doesn’t exist and anything can happen. I have been known to fly and have even tiptoed throughout the tulips and danced with leprechauns. One day I actually discovered I could dance better than Michael Jackson. Crazy, huh? Especially since I can’t even walk.

The only strange thing is that I can’t stay in that place for long. That’s why my life has become a continual daily life of nap, nap, nap with no sleep, sleep, sleep. I’ve been visiting there quite a bit lately; this land of nap. Maybe you have too.

And don’t feel bad if you are experiencing the opposite and can’t fall asleep no matter how hard you try. That can be just as miserable, but in a different way. Wow, a life with MS is as unpredictable as the weather. Sleep, no sleep…Ugh!

Just remember to be good to yourself through it all. Yes, you are that important.

I think my bed is calling to me. I can actually hear it humming my favorite song…Zzzzzzz. Me and sleep, sleep and me, we have become the best of friends.

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

My recent journey with multiple sclerosis

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Last week I had the scary experience of my legs choosing to quit holding me up. I don’t know if they were tired or just wanted to take a break, but in the middle of a standing transfer from my power recliner to my power chair, my legs decided to give way which meant my body met the floor rather quickly. I wasn’t planning on a visit with the floor any time soon, but there we were, face-to-face.

It took me quite a while to be able to gather enough strength to get back up. Thankfully I was able to MacGyver my way to a living room chair. The hardest thing for me is that I have lost most trunk control so I topple over without both of my arms holding me up when trying to prop my body up in a sitting position. If one arm moves away to do something else I will topple over. Like a 3 legged chair on tilt.

My family came over to help get me to bed mid-afternoon. I just wanted to go to bed because I was hurting. My fall bruised my entire right foot. It’s still purple today but the swelling has gone down. Not yet sure if anything is broken until I meet with the Orthopedic doctor. I have no feeling in my toes which doesn’t mean much because numbness in my legs and feet had been creeping deeper for months anyways. So it was a terrible day from the very start.

Many times when our bodies quit working as they should, we become discouraged. Those helpless times open the door for our thoughts to run wild with fears, and sometimes we find ourselves growing tired in the struggle.

This journey that we’re on — this journey called life — I know it’s not perfect. It has many hurdles and obstacles that keep jumping in the way. We can allow those difficulties to make us angry because our path has become hard and seemingly impassable, or we can choose to be thankful for the lessons we learn along the way.

I know it sounds crazy to be thankful while facing a monster like multiple sclerosis every day, but it’s possible, and you can be too.

What lessons? For me…

MS has taught me to hold it together when I would much rather fall apart.
MS has taught me to keep going when it would be so much easier to just throw my hands up and quit.
MS has taught me to rise up in strength when every part of me is weak and weary.
MS has taught me to always be grateful in the good times and to find the good in the bad.
MS has taught me to allow the tears because they provide water in the desert.
MS has taught me to sing even when I have no song left to sing.
MS has taught me to laugh in the face of sorrow.
MS has taught me to join hands with others just like me so no one has to face this beast alone.

What great life lessons. Lessons I have never regretted. You see, I have discovered that I am weak. My emotions, my thoughts, and especially my body…all weak. Friends may not understand the battles that I fight or realize the fragility of my life, but even when I’m alone in the journey I will hold my head high.

MS has made me strong in ways I never thought possible. I stand strong even while lying flat on the floor.

My strength is not something that can be taken away, it is something that grows with each passing day. Instead of allowing the struggle to defeat me, it is only making me stronger. I am strong because of my journey with multiple sclerosis, and that, I would never trade.

Stand strong in your weakness. Hold your head high and proudly wear those battle scars…those bruises and scrapes you have collected over time. With your sword in hand, charge forward in the fight. You are not defeated. You are just getting started.

MS mystery of the day: What Happened?

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This morning I woke up to a few mystery bruises. You know, those dark marks on your skin that appear overnight for no apparent reason. I have no idea who I was fighting in my sleep. Maybe an anvil fell on top of me in my dreams. Hey, it could happen. Anything’s possible, right?!

I am always fascinated when things like that happen. I began playing the past few days back in my mind trying to piece together the story of what happened. Most of the time I’m unable to determine exactly what I did. All I know is I went to bed last night and my arm was fine. I woke up this morning and BAM…I’ve been sucker punched and am now the proud owner of a black and blue softball sized bruise on my upper arm and a few small ones on my shin.

Multiple sclerosis comes with a full array of mysteries. I think I wake up to a new one every day. I have to say that I know for a fact the answer to them is not Colonel Mustard in the Library with a Candle Stick. Maybe it was Professor Plum? Or Miss Scarlet?

For now though, today, if anyone asks me what happened I’m going to tell them that some idiot tried to rob me in the middle of the night but due to my quick thinking and amazing skills, I karate chopped him to the ground and sent him to the hospital. Might as well have a little fun with it. It will be interesting to see who actually believes me.

I try to always put a fun spin on the things that happen in my life. If nothing else, it’s entertaining. Besides, I’d much rather laugh than cry.

I’ve been kidnapped before, run over by a tractor, fallen in a pool dressed as a clown and ridden a horse backwards while wearing a flaming hat. If you believe any of that, I have a piece of the moon I can sell you for $100. It even comes signed by ET himself.

Try making today into something fun. Find a laugh in the ordinary, mundane or chaos. Get creative. Enjoy your day regardless of the mess around you. Anything is possible with just a little bit of imagination. This life is so interesting. I always wonder what’s going to happen next.

I gotta go. Cookie Monster is cooking me breakfast and it sounds like he might have mistaken the plates for cookies again. Good morning, good afternoon and good night everyone.