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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

 

Live one day at a time… it’s okay to not be okay

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Living with multiple sclerosis can be crazy and unpredictable. I have yet to have two days the same. I have good days, bad days, terrible days, and what the $#*^ just happened days.

One day I was normal and the next it was like I had just gotten off one of the most exhausting, nauseating roller coaster rides of my life. My head was spinning, I couldn’t get my balance or catch my breath, and my vision was blurred. Try doing anything when your body is sending you those kinds of signals. It was like I was living on a perpetual roller coaster ride without a stop button or an ejection lever to help me escape.

At those times I get tired quickly and find it hard to move any part of my body. Even just lifting my arm seems impossible to do because I feel so weak. I have to coax my muscles to cooperate with me in order to do anything. At worse, I can’t get out of bed or even sit up without falling over. It’s at those times that I feel useless, tears flow, and depression sets in, after all I just want to have my life back but MS keeps taking things away.

I have to stop and remind myself that I’m needed and important. That I’m stronger than I think I am. It’s okay to fall apart and need help. I don’t have to do everything but there is always something I can do. Today I’m going to exercise as much as I can. That may seem impossible but my definition of exercise is much different now. I just need to move as much as I can. There are a few hand and finger exercises I have already been doing just to get my upper muscles going.

This morning as I’m bundled up on the couch due to it being cold in my house because I’m trying to save on using too much heat due to the costs, I see two beautiful deer munching on the grass along the tree line. Their playfulness makes me smile. I need that kind of carefree living. To just take things a day at a time and a moment at a time.

My plan today is to just enjoy my day regardless of what crops up… how about you?

There’s nothing I hate more than MS

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There’s nothing I hate more than multiple sclerosis. I could say liars, fake people, politics, bad punctuation, and people honking at me because I don’t drive fast enough… but those things just don’t come close to MS.

MS keeps me up at night. I toss and turn and even yawn all throughout the night but I don’t seem to sleep more than 2 hours at a time. It’s no wonder that I wake up exhausted. That’s not a productive sleep at all.

Because of MS my emotions seem to have a mind of their own and tend to go haywire without any provocation or reason. I have been known to cry without cause, laugh at seemingly sad moments, and forget what I’m doing while I’m doing it. That just adds to my crazy mixed up emotions.

I feel like a prisoner trapped in a dysfunctional broken body. Like I’m jailed up inside of myself without control over how my body will behave from one moment to the next. MS has taken over my life completely. So what am I to do?

Marilyn Monroe says it best. I never thought I would be quoting her.

This life is what you make it. No matter what, you’re going to mess up sometimes, it’s a universal truth. But the good part is you get to decide how you’re going to mess it up. Girls will be your friends – they’ll act like it anyway. But just remember, some come, some go. The ones that stay with you through everything – they’re your true best friends. Don’t let go of them. Also remember, sisters make the best friends in the world. As for lovers, well, they’ll come and go too. And baby, I hate to say it, most of them – actually pretty much all of them are going to break your heart, but you can’t give up because if you give up, you’ll never find your soulmate. You’ll never find that half who makes you whole and that goes for everything. Just because you fail once, doesn’t mean you’re gonna fail at everything. Keep trying, hold on, and always, always, always believe in yourself, because if you don’t, then who will, sweetie? So keep your head high, keep your chin up, and most importantly, keep smiling, because life’s a beautiful thing and there’s so much to smile about.
— Marilyn Monroe

Don’t worry about tomorrow. Live for today and be happy. It’s possible to do. Listen to  Bobby McFerrin and let the song brighten your day. It always does for me. It makes me smile no matter what is happening.

Multiple Sclerosis: How it began in my life

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I woke up one morning about 14 years ago and knew something was wrong… really wrong. The day started out just like it always did. My alarm clock buzzed me awake declaring a new day had begun. I sat up, stretched really big and yawned, only as I rubbed my eyes I could tell something was different.

I sat in bed and realized I couldn’t feel the upper right-side of my face. It was such a strange feeling. It wasn’t like I could have slept wrong pinching a nerve in my face. Was that even possible? And I knew an elephant didn’t sit on my head during the night because elephants don’t live in my neighborhood. What was it?

I spent a few days contemplating its cause. I think I was more hoping it would simply go away than anything else, but each day I woke up to more of the same as the numbness kept growing on the right side of my body: my head, torso, arm, leg and even my vision. That’s when I became concerned.

My diagnosis was a quick one due to the increasing symptoms that began appearing all throughout my body. The MRI’s were indisputable. They showed the damage taking place inside my body. My immune system was having a picnic creating lesions in my brain and spine. They seemed to be starving and my Central Nervous System was their food of choice.

Ever since that day, multiple sclerosis has been tagging along with me trying its best to define me. I’ve tried to shake it loose, hide it away, deny its existence, and even ignore it in hopes it would find somewhere else to live, but no matter what I’ve tried, it seems to simply dig its heels in deeper refusing to move.

For whatever reason, MS has made its home in my body but even though it is a part of my life, it’s still not who I am. I am not my diagnosis. I am not my symptoms. I am not MS.

My identity isn’t tied up in this disease. But do you know what else I learned? My identity isn’t my career, my talents or my style either. Because of MS my career ended, my talents became a struggle and my style became simple. Life changed and in the change I discovered I wasn’t any of those things.

But if those things are not me, then who am I?

I’ll tell you who I am. I’m a fighter who refuses to give up. I’m a warrior in the making. I’m brave, I’m courageous and I will never surrender. That’s who I am. Sure, days get hard and I cry much more than I ever thought possible as the world comes crashing in on me, but somehow I rise above the despair, the pain, and the heartbreak. Somehow I get through my day. Somehow I make it through the struggle. My faith in God, my tenacity and my never quit sprit keeps me strong.

I’ve learned to be thankful in all circumstances. To look this disease of MS squarely in the eyes and say, “I am not defeated because of you and I will never give up.” Sometimes I have to do that while shaking my fist in the air as I remind myself that even though I feel weak and broken, I am still a winner.

I’m thankful for my weaknesses. I’m thankful because they show me just how strong I really am. You see, my strength isn’t measured by the amount of things I can or can’t do. If that were the case, I’d be in a whole lot of trouble. No, my strength is determined by the attitude I bring with me while going through the chaos I face daily.

Don’t let MS define you. Don’t let the bad days determine who you are. With each passing day, you are an amazing warrior standing strong even though your body is weak. Some days the battle will overwhelm you but you will also have days when you will overwhelm it. Stay in the fight. You are not your MS. You are amazing. You are fabulous. You are incredible. You are… well, you are YOU!

How do you live with MS? You just do it!

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You have been through so much lately. You’ve crossed hurdle after hurdle going from one doctor’s appointment to the next. You’ve made your way through danger more than once in the past year alone. You’ve climbed mountains that no one even thought were scalable and yet you overcame the odds. Every day seems to present itself with challenges, but somehow you find a way to get through them.

Admittedly, you don’t always win. You don’t always cross the finish line at the end of the day, but the most important thing is that you never quit. Sometimes you find yourself questioning everything happening in your life. Sometimes the dreaded questions “why me?” and “why now?” run through your thoughts but they never seem to come with definable answers, only more questions.

What do you do when faced with a life of multiple sclerosis? Where do you go from here once diagnosed? How are you supposed to function in an able-bodied world that doesn’t seem to understand the complexities of living with MS?

The answer…you just do it!

You drag yourself out of bed each morning exhausted, weary, overwhelmed, and at times feeling completely defeated, but you make your way through the struggle in your day anyway. Some days are better than others. Some days you can walk, other days you can’t. Some days you find yourself laughing, other days even a giggle seems impossible. But you do it anyway.

Today may be one of those impossible, unimaginably difficult days. I won’t lie to you, regardless of what complications MS has given you, a life with MS is hard. There are surprises around every corner; some good, some bad.

Sadly, a majority of the awareness campaigns for MS don’t actually tell the world how ugly MS can be. They show the smiles and the brave souls walking their way through a 5k trek with their arms raised in victory, but what about those who can’t walk? Or the ones that have trouble speaking, breathing, eating, seeing or functioning in a so called “normal” world? Why are those people never seen or shown as the face of MS?

Yes, there have been great strides made in helping people manage their MS symptoms and new treatments are being discovered that help slow its progression down. For that I’m enormously thankful. But when is the public going to see that MS isn’t just an “Oh, well it could be worse” kind of disease? When are they going to be shown the reality of what it actually does to a person’s life and body?

My hope is that some day soon people will see the reason we fight so hard every day, but also the pain we endure. That they will understand just how much we overcome on a daily basis. That we may put on a brave face, but deep inside we carry around an uncertainty of how long we will be able to wear our brave.

Every person fighting MS is brave, every one is amazingly strong, and every one is on a journey of uncertainty. We hope for a better tomorrow but we also hope for a world that will truly see MS for what it really is…a chronic progressive disabling neurological disease that has no known cure.

It’s time we let the public see the ugly side of MS and why we so desperately need a cure.

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.

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.

Living with a urostomy and MS

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I’ve been having trouble functioning due to the kidney stones I am dealing with. The one I passed last month was over 19mm in size. That’s a monster. As you know I had my bladder surgically removed due to the bladder issues I was having with my suprapubic catheter (SPC). With multiple sclerosis most people do well using a SPC but I now have a stoma that helps me to empty my urine. It’s called a urostomy.

It gives me control of my makeshift bladder which is a urine pouch that I attach to my stoma at my stomach area. I empty it myself when it gets full just as you empty your bladder throughout the day when you go to the bathroom. And at night I can attach a larger night bag so I don’t disrupt my sleep needing to empty it.

Thankfully the pouch fits inside my jeans or whatever clothing I may be wearing so people don’t even know it’s there. My kidney’s are still functioning just routing my urine to an external pouch that I change about every 3-4 days.

I didn’t know my kidney’s could pass stones via my stoma like the monster I did pass. But at the moment my recent CT scam shows that I have a stone that is blocking urine from passing in my right kidney. Because of it my kidney is inflamed which isn’t good. I see my urologist on the 10th. I was hoping he could see me sooner.

But in the meantime I’m taking pain pills to help curb the pain. I’m exhausted just writing this. I also have a temperature that I recently got under control. It’s now 102° but manageable with antibiotics and Tylenol.

I’m thankful that I had my bladder removed, it has been a great help to me in dealing with wetting myself as I did before. The only problem I have now is when my pouch has a leak from where it attaches to me, which doesn’t happen often.

I don’t have to time my bladder to my life like I did daily before. I have an empty water bottle in my van if I need to unexpectedly empty my bladder which really helps. Just if you ride with me and see that it’s full, know that it’s not a Mountain Dew. (grin)

I also have a birthday coming up and hope anyone that can help me to cover the cost of my new powerchair will help. If everyone gave $20 that would help out tremendously. Thank you so much for your help.

____________________

Fundraiser for Penelope’s New Powerchair

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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.

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MS takes the simple out of life

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Most people don’t have to think about the things they are doing in life like answering the door when an unexpected visitor arrives until something like multiple sclerosis comes along and messes with our ability to do those things. Sure, we have to juggle things around in order to fit the sudden changes into our day and most of the time those shifts are not so simple to make. It’s that way with just about everything I do.

I’ve never been a big fan of running errands. Who would have thought the mundane chores of grocery shopping, going to the bank or the post office, and even picking up lunch could be so daunting. For me, in order to run errands, the timing has to be planned perfectly to ensure I have the energy for the remainder of my day. Not planning can end in disaster…meaning, can end in me vegging on the couch for hours just to regain enough strength to help me cope with the rest of my day. Some errands can set me back days…not just hours.

I have to think about doing things more than people should. For example, take the act of walking. That may seem like a strange thing to have to think about, but when I stand up to try and walk, I have to make sure I have the proper supports around me to keep from falling down. Then I have to concentrate on each step, movement, leg shift and foot lift. It takes GREAT effort and tremendous thought to do something as simple as walking and sometimes I don’t have the strength to do it. My muscles turn to jello and won’t allow it.

If I need something in the kitchen, I can’t just jump up and get it. If I drop something on the floor, many times that item will remain where it landed until I have the strength to reach down and pick it up. By the way, that can mean it will remain on the floor for days. If someone comes to the front door, it takes so much energy to transfer to my wheelchair and make my way to the door only to find out it’s a solicitor wanting me to try their restaurant take-out service, that’s why most of the time I just don’t answer it.

When MS comes into our lives, the things most people take for granted become something we are grateful to still be able to do. We know that one day everything will change, the unexpected will happen, life will shift and what’s simple will no longer be simple. No amount of planning prepares someone mentally for those kinds of changes.

If you find yourself frustrated because you need to fill up your gas tank on your way to work today or because you need to pick up some cheese for tomorrow’s spaghetti dinner, stop and remind yourself that you are still able to do those things…and be grateful for the little things no matter the inconvenience.

Don’t take anything you are still able to do for granted. Those things may take extra time to work through or you may have to get creative in the way you do them, but you will have accomplished something greater than great when you do complete it. You will have done something some people are no longer able to do.

Don’t give up, don’t give in and keep going while you can. That’s what makes you an MS Warrior. Plan B, C, D, and sometimes even Z, ZZ, and ZZZ have become a part of my everyday life and I’m okay with that. I will keep trying, keep going, and shift with the changes until I no longer can.