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Goodnight, Moon: A See-You-Later from Positive Living with MS

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Decluttering started in my kitchen, and now it’s reaching my website. After a lot of reflection, I’ve made the difficult decision to stop writing my weekly blog posts. I wasn’t able to raise the funds needed to keep the site running, and I see that as a clear sign it’s time to let this chapter close.

I want to thank every single one of you from the bottom of my heart — for your support, your comments, your shares, and the way you’ve walked this journey with me. This little corner of the internet has been a safe place to laugh, cry, vent, and find hope together, and I’ll always be grateful for the connections we’ve built here.

This isn’t a forever goodbye; it’s more of a “see you later.” You can still find me on X (@PositiveWithMS) and Facebook, where I’ll pop in to share thoughts, encouragement, and maybe a silly meme or two when I can. Let’s keep the conversation going in those spaces and even beyond the screen when life allows.

For now, I’m stepping back to focus more on the present moment, on resting, on caring for my health, and on whatever comes next. I’ll miss this space and so many of you, but I’m also looking forward to what’s ahead.

So for now, I say goodnight to this beautiful chapter. Goodnight, moon. Goodnight, stars. Goodnight, Positive Living with MS.

If you ever need a reminder: You are strong, brilliant, and incredible — mighty MS warriors every one of you. Never forget that. Keep shining, keep fighting, and know I’m cheering you on from wherever this path takes me.

With love and gratitude,
Penelope

Is it possible to be thankful living with a chronic illness?

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We live in a world that is prone to complaining and arguing. Think about it… everywhere you turn people are discontent with their jobs, their home, their entertainment choices, their car, their families, their life, even their health. For some people it is hard to find anything that they are content with.

They complain about their work schedule, about forgetting an appointment, about the wait time at the doctor’s office, about prices at the store, about their boss’ attitude, and even about other people always complaining. People seem to be discontent in just about everything around them.

When we meet others with multiple sclerosis we discover we have a common animosity. I went to a meeting with other MSers after I was diagnosis with MS and I felt like I was at an AA meeting…

Hi, I’m Penelope and I have MS…  then everyone spent the time complaining about their struggles. Complaining just seemed to be a part of the culture. We all complained and in our complaining we bonded together.  I noticed that bitterness and complaining was contagious. When I left I felt worse than when I arrived. This world is so twisted.

Feeling sad about this time in my life or where multiple sclerosis is taking me is just not who I am. I decided I was going to change that kind of thinking. I was going to choose to be thankful instead.

I may be worse off than I was last year at this time but I still have a lot to be thankful for… I just have to look for it in the oddest of places. Do you know what happened when I changed my way of thinking? Did my life get better? Did MS go away? Did my pain cease to exist?

NO.

I admit that sometimes it’s hard to be thankful. Sometime it becomes difficult to see anything good around you but even in the middle of difficult times, goodness is there.

I made a casserole last week and forgot to add any spices to it. It looked delicious but sure didn’t taste like it. I’m thankful that I was able to whip up a batch of seasoning to add to the dish and I didn’t have to trash it. It was actually quite tasty.

The weather here is finally cold. Freezing cold. I don’t like the cold because my muscles freeze up with it. I woke up today to a cold, cold house and a body that wouldn’t move. I’m thankful for my heated blanket, my fuzzy slippers… and hot coffee. It’s a veg out kind of day. I’m thankful for those kinds of days.

Other things I’m thankful for… good friends, a fireplace even it’s fake flames, pumpkin pie, pizza delivery, family, my own home where I can feel safe and warm, laughter, love, pain because I wouldn’t feel the joy in this world without it, a full pantry, and hope for a better tomorrow.

Here in the USA it’s thanksgiving season… don’t spend it complaining. Allow yourself time to vent and to talk about the problems you are facing but once you let it all out… let it go. Complain less, live more. Your life is what you make of it. Fill it with gratitude.

I think you will find that you are more fortunate than you realize. What are you thankful for?

Thrive at Home This Holiday Season with MS

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Have you ever had this happen… a friend calls you up to invite you over for a get together. You would love to go but the challenge of a long drive, late hours, and lack of accessibility makes the decision for you. You politely decline but inside feel miserable because you realize how limiting your life has become.

There are times when having a disability is a great thing because you have an excuse to decline an invitation to a party you have no interest in going to or a reason to not help a friend move the furniture in their house. But it’s sad when you can’t join in on something you really want to be a part of.

Life changes with multiple sclerosis… which sucks. You find yourself making decisions based on how difficult it is to climb the stairs rather than on whether you have to pick up a gift and a platter of food on the way. The depression that weights on you can be hard to deal with and even overwhelming at times. It’s not an easy thing to come to terms with.

At this time of year it can become extra hard because you see people going out enjoying the holidays, spending time together shopping… doing all the able-bodied things people do that you are no longer capable of doing. It seems the winter months have this way of ushering in a sadness along with the cold and the snow. I’ve felt it myself at times. It can become overwhelming if you allow your thoughts to rule the day and slip into the “why me” places.

I know it’s hard, but try and find something good in the chaos. When you have to stay home, choose to have your own party in your PJ’s. Even if it’s a party all by yourself, have it anyway. Don’t let the fact that you can’t go somewhere get you down.

I have a party box filled with puzzles, colored pencils, coloring books, games, legos…all those creative things I played with as a kid. I pull it out and have fun. Strangely, it’s quite therapeutic and helps me to pass the time without turning the evening into a pity party. I like my PJ parties so much better.

So the next time you have to decline a friends invite, put on some festive PJ’s, make some hot cocoa and pull out your party box. I’ve grown to love these solo PJ parties. My box saved me from many a pity-party spirals, and now I’m off to mold a Play-Doh alien with googly eyes and spiky hair. Try it — Add scented candles, a favorite playlist, or a journal to doodle in. What’s in your party box? Share below or tag me on X — I can’t wait to hear!

Multiple Sclerosis flipped my life upside down

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Over the years, there have been things that have tried to steal my smile. I have dealt with things that no one should have to face and still be standing to tell about it, but here I am… smiling. I tell you that because I want you to understand that we all have a dysfunctional, messed up, broken past. No one has the perfect life. We all have a past, we all have hurts, we all have dirty laundry, add to that a diagnosis of multiple sclerosis and I’d say my life has been pretty messed up.

Many times we are so focused on the big things happening that we often miss the little ones that really make a difference, yet it’s those little ones that make up our days and truly make our lives go around. I think sometimes we get so busy looking for the perfect place to live, the perfect job, the perfect spouse, the perfect kids, the perfect health, that we often forget what really makes our lives enjoyable. It isn’t the big perfect anything. What brings smiles to our faces are the little things that get us through our days and most importantly, through the hard times.

Sometimes it’s just a phone call from a friend or a person holding the door open for you at a restaurant. Sometimes it’s having a child hand you a fist full of weeds or being able to put freshly washed sheets on the bed. Sometimes it’s quiet times in the morning or noisy times at dinner. Sometimes it’s things you can’t even explain because it’s just a feeling you get deep inside.

It seems the big things are what flip our world upside down and it’s the little things that turn it right side up again. Without the little things, I think the world will end as we know it. It’s the little things that hold everything together.

Take time today to enjoy the small moments that bring you joy, and just so you don’t forget about them, take time to write them down. This way you will have a forever memory of those special moments. Fill the pages of a blank book, a notebook, a memory book, a computer text document or what I like to call a gratitude journal, with your happy thoughts; those things that made your day extra special or brought a smile to your face.

This way, when you are having a terrible upside-down day, you can read through those memories and find a smile to set things right again. Trust me… it helps. When I pull mine out and begin to read, without fail, I find myself smiling and sometimes even laughing. Those smiles and laughs, those memories… they happen because of the little things.

Make the most of your day today, live in the moment, and never forget the little things that get you through the darkest of times.

When taking a shower hurts

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It seems easier to think and cry in the shower. I have washed many tears down the drain in my lifetime. Lately though, showers haven’t been so freeing. This may sound weird to some of you, but much of the skin on my face, arms and legs have become so hypersensitive that even water hitting me from the shower head hurts. And when I say hurts…I mean HURTS! It feels like I’m being pelted with pin and needles.

I’ve been pointing the shower head to the side wall and filling a large cup with water to rinse the shampoo out of my hair. It makes bathing a bit more complicated, but if I don’t want to smell like a skunk after a long day, I have to change and adapt.

One thing I have noticed is that after a shower I am much more exhausted than I was before I even started. By the time it takes me to bathe, dry myself off, put on some deodorant, and get dressed, I have a hard time holding my eyes open.

If it’s morning I have to take a nap for about an hour or more. If it’s night time I need to be sure to dry my hair and finish putting on some lotion and skin moisturizer. By that time I crash in the bed for the night. I’ve been known to fall asleep curled up in my towel then I wake up with my hair dry and I look more like a drowned cat because sleep overwhelmed me. But regardless of how much sleep I may get, I still wake up exhausted.

I never really realized how much I was truly taking for granted in the past. But today, many things have become a challenge for me to complete that never did before. It’s as if each day, as I pull back the covers to get out of bed, I start my ascend to the top of Mount Everest. I don’t always make it to the top as the day comes to a close, but I press on anyway.

Multiple sclerosis is the disease that keeps on giving and taking away. But regardless, I refuse to let it limit or define me.

REMEMBER: You have this terrible, pesky disease called multiple mclerosis and it’s trying to take over your body, but you are not MS. You are an amazingly courageous person that can still love, dream, laugh, and hope for a better tomorrow.

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!

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)

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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