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…
Merry Christmas, Happy Hanukkah and Happy New Year to all.
I’ll see you soon.
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.
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?
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!
The phrase “down the rabbit hole” comes from Alice’s Adventures in Wonderland, where a curious girl named Alice tumbles into a strange, topsy-turvy world after following a rabbit. One moment she’s on solid ground; the next, she’s falling into Wonderland, where logic bends and the unexpected becomes routine.
I, too, have fallen — unexpectedly — into a place I call MS-Land, a realm shaped by multiple sclerosis. Like Alice, I’ve learned to navigate its quirks, though my fall came with a stumble down the stairs, courtesy of MS’s unsteady grip.
In MS-Land, the rules grow “curiouser and curiouser,” as Alice might say. Take the riddle of what to eat and drink — it shifts daily. One day, rice feels like a safe haven; the next, it betrays me with fatigue. Coffee might lift me up, only to let me crash. Dietitians seem as lost as the Mad Hatter, each peddling a different tea party menu. I’ve decided to trust my own palate, forging a path through the chaos without a marketing firm’s glossy promises.
Deeper down the rabbit hole, I meet a cast of peculiar characters, not unlike Alice’s Cheshire Cat or Queen of Hearts. There’s the BusyBody, buzzing with unsolicited tips; the KnowItAll, lecturing me on cures; and the NoseyNeighbor, peering into my struggles. Their intentions may be kind, but their advice spins my head with confusion and dizziness — symptoms MS already amplifies. I’ve found their chatter less helpful than the silence of my own research.
That research has become my guide, revealing tools to navigate this strange land. Leg and foot braces steady my wobbly steps, walkers support my journey, and trapeze bars hoist me in bed. Wheelchairs and scooters ease my fatigue, while adjustable beds adapt to my needs. There are eating utensils I strap to my hands to prevent dropped forks or spoons, exercise bikes with seatbelts to keep me secure, and cooling vests to fend off summer’s heat. These are my Wonderland gadgets, practical magic in a world that defies normalcy.
Yet, the truest companions in MS-Land aren’t tools but people — those who know its terrain and challenge me with care. Like Alice’s wiser guides, they ask gentle questions: Is this choice serving you? Friends, family, mentors, or a counselor — they’re the ones willing to descend the rabbit hole with me, walking beside me as I map this unpredictable place. It’s okay to fear what lies below; the journey is less daunting when shared.
As I venture deeper, exhaustion creeps in, my thoughts tumbling like Alice’s after her fall. I muse — do brown cows give chocolate milk? It’s a silly distraction, and soon I doze off, dreaming of cows leaping over the moon, one landing softly on my toes. I wake, unharmed, still able to move. In MS-Land, even dreams offer a reprieve, a reminder of resilience.
We don’t need to dwell in the rabbit hole forever. Each trip down fosters a deeper connection — to myself, to others — unlocking an inner strength that flows from those bonds. I hope you, too, have companions ready to explore this strange land with you, no matter how odd the path. In MS-Land, as in Wonderland, the adventure shapes us, one curious step at a time.
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.
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.
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.
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.
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!
1. Simplify your life.