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What being brave feels like

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I know how hard it is to push through the murkiness and brain fog that surrounds you all because of multiple sclerosis. You don’t deserve the troubles it brings to your life. You didn’t cause it and you can’t seem to escape from its hold on you.

It’s almost like you are stuck in a pool of quicksand that feels more like concrete than murky water. At least with murky water you can move and keep you head above the water line. With concrete you just sink to the bottom like a rock.  I have had my fair share of bottom sinking moments. I have the bruises and broken bones to show for it.

At those moments all I know to do is cry. I don’t feel very brave when that happens. Do you know what makes me feel brave?

I feel brave when I stand up and don’t let people tell me who I am or am not.
I feel brave when I face the monster that has tried to destroy me even while shaking in my boots.
I feel brave when I hold someones hand so we can face this journey together.
I feel brave when I put on my socks without falling over.
I feel brave when I ask someone for help.
I feel brave when I tell someone to their face that I will not be treated in a certain way.
I feel brave when I stand my ground about the medications I will or won’t take.
I feel brave when I tell someone how much they mean to me.
I feel brave when I make it through a day with less battle scars than the day before.
I feel brave when I manage to get out of bed while my body is screaming at me to just go back to bed.
I feel brave when I use the toaster without jumping out of my skin when the toast pops up.
I feel brave when I know that MS can’t sink me.
I feel brave when I actually enjoy my alone time without feeling guilty.
I feel brave when I help someone else to be brave in the face of what they fear.

Keep fighting the good fight. Peace, love and lots of chocolate to you…

I’m ready for a new year

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It’s hard to believe that a new year is here. It’s a new year, a new day, I have a fresh cup of coffee… but same ole body. Hmm, that didn’t go as planned. I guess you can’t have everything you wish for. I tried wishing for a million dollars too but that didn’t work out for me either. I still have the same bills, house payments, piles of dirty laundry, and still have multiple sclerosis to battle.

We have all come through some crazy moments and stumbled through them into another year. Maybe things didn’t go as you wanted, but you made it. Now, that’s something to celebrate along with all the fireworks, champaign bottles and shouts of Happy New Year.

I can see a lot of good in the bad. Yes, there were some not-so-good days, some terrible days, and some downright terrifying ones… but if I truly look, I can see past those times and find the good. Days that made me smile instead of cry. 2024 can be filled with those kinds of days too. Be determined to find the good in the days, weeks and months ahead… even in the pain and the struggle.

Multiple sclerosis is not an easy disease to live with, but neither is the disease of negative thinking. Choose this coming year to live each day looking for the good. Even if there is only one tiny spec of good in a day, choose to find that one spec and hold onto it. It will make your year ahead greater than you ever imagined.

Some people have asked me if I have a resolution for the new year and the only answer I have is that I plan to be a better person than the person I was yesterday. That’s my plan for every day. I make many mistakes along the way in life. Some hurt me, some hurt others, and some have no consequences other than the fact that things could have been handled better.

There are some things I have learned about life along the way. The key is the keep learning. That is the key to life. That is what makes things the most enjoyable. And that is what helps us to progress and improve.

  1. Perfection doesn’t exist, stop looking for it.
  2. It’s not your job to make everyone happy, cut your losses and go.
  3. Choose to spend your time with people who lift you up.
  4. Kindness makes you a better person. Be kind — always.
  5. Only you are the person who can change your life.
  6. Don’t sweat the small stuff. 99.9% of the stuff in life is small.
  7. Living with MS is not a competition. Really, it’s not.
  8. Don’t spend too much time in negative environments. You can drown that way.
  9. People may never understand your pain, don’t hold it against them.
  10. You never have to deal with more than one moment at a time.
  11. Getting truly organized can vastly improve anyone’s life.
  12. Revenge is for the petty and irresponsible.
  13. If anything is worth splurging on, it’s a high-quality mattress. You’ll spend a third of your life using it.
  14. Most of what children learn from their parents isn’t taught on purpose.
  15. Problems, when they arise, are rarely as painful as the experience of fearing them.
  16. Life is a solo trip, but you’ll have lots of visitors. Some of them are long-term, most aren’t.
  17. Wishing things were different is a great way to torture yourself.
  18. The ability to be happy is nothing other than the ability to come to terms with how things change.

Multiple sclerosis doesn’t take a break for the holidays

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Multiple sclerosis doesn’t take a break for the holidays. Oh, how I wish it did. I’ve already filled my refrigerator with tasty foods easy to prepare and have coffee ready to brew. My laundry is done for at least a week and the dishes are all cleaned I just need to put everything away in the cabinets. My Roomba is all set to clean the floors for me so everything seems to be going good… for now.

But I live in a world where the MS Monster is real no matter what’s taking place around me. My parents always told me there isn’t a scary monster hiding under my bed or in the closet, but I now live with one that follows me around every day and even growls at me from time to time. He’s an impatient bugger.

I think its main purpose is to instill fear in me… fear of the unknown, fear of increased disability, fear of being alone, fear of not having needed support. Such great amounts of fear that has the potential of growing and discouraging me from enjoying anything in life. The holidays aren’t as much fun as in the past. I do my best to find some joy even in the worst of times but it’s getting harder to find.

My family will be coming over which could be stressful, but I no longer get stressed trying to do too much. I actually don’t do much at all. I just work to keep the most needed things handy and have plenty of chocolate on hand for an emergency. Like Duct-tape, chocolate can fix anything.

I’m always ready for a battle. With MS I’m basically in a fight every moment of the day. I need to be strong and ready to fight.

I can’t stop myself from thinking about my former life. Was it real? I’m not sure. It’s so far away from my current reality. Sadly, my mind holds onto pieces of things that have long been erased. It has a tendency to bring on depression which can further weaken my health trying to convince me to give up.

I spent years convincing myself that monsters were only in my mind… that they weren’t real, but in this body I’m living with the MS Monster. I haven’t been able to shake him. I’ve worked hard to power through the fear. It’s not easy and comes with lots of lonely times. Most people don’t understand how painful and lonely it can get.

The best way to fight is to take it one day at a time. You are always taking care of everyone around you, but you need to focus on yourself right now. Stay positive and know that we are all cheering you on.

Never stop believing in your extraordinary inner strength. It has brought you this far and will guide you along the way. No matter what life has thrown at you in the past, you have survived it. You are so much stronger than you think. Keep on fighting and don’t give up.

I wish I could take this monster away from you. Remember that you are not alone in this fight. You are amazing.

My Multiple Sclerosis Seussical World

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I don’t know what Dr. Seuss book I fell out of, but this weird little word world still has me tongue-tied and inspired by his insane imagination. I really need to create my own multiple sclerosis dictionary with all my silly lingo words that get created when I flub up my speech… which happens often.

Wheely Thingy – rollator walker
Snippycut – scissors
Urmp – perplexed
Waddlewampuz – walkking crooked
Fatone – big toe
Phogo – mobile phone

“I like nonsense,” Dr. Seuss once said. “It wakes up the brain cells. Fantasy is a necessary ingredient in living. It’s a way of looking at life through the wrong end of a telescope. Which is what I do, and that enables you to laugh at life’s realities.”

That’s how I want to live my life. Ready to zip-a-dee-zoot and head out the door for my day filled with the impossible, wacky, and unknown happenings in my MS world. Here are few of his nuttiest little nuggets that’ll help you feel extra Seussical while you supp on green eggs and ham as you go about your MS  filled day.

Ga-Fluppted:
In Hunches in Bunches, the line reads, “That mind of yours… is frightfully ga-fluppted. Your mind is murky-mooshy!” Reading it in context like that, it seems like that term is meant to be some kind of funky MS train of thought mixup. Seems about right.

Zizzer-Zazzer-Zuzz:
In ABC: An Amazing Alphabet Book! you are introduced to a three-Z creature “Zizzer-zazzer-zuzz”. It’s believed he has escaped from the zoo. He plays jazz on the zither and loves to eat Zizzer-Zoof seeds. I think “zizzer-zazzer-zuzz” can definitely sub in as the new “thingamajig.”

What wacky seussical words and phrases might apply to your MS life?

I can’t help but remember Dr. Seuss saying, “You have brains in your head. You have feet in your shoes. You can steer yourself any direction you choose.” I believe that whole heartedly. The problem is that most of us underestimate ourselves.

You are capable of more than what you think you are. All you need to do is believe in yourself and hang on as you navigate this weird and wacky MS seussical world. Yipity-zoo-za-zay.

Do you see me?

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That’s it. I don’t think I can take any more. I have worked and worked and worked, yet, things seem to just keep going wrong. It used to not be like this, but now I’m the person they don’t see. I stare out my window into the world and I see them. So many lives oblivious to my pain, to my illness, to my struggle with multiple sclerosis. I wish to be seen, to be known and understood. I sit here in my house, alone and with my heart torn out. The sorrow is deep.

The masses see my wheelchair and so they should, but they don’t see me. I’m not invisible. I’m not broken. The loss of my mobility is crushing. It makes me long to shout out “Hey, I’m here, I’m alive, Look at me.” But all I can do is stare out the window.

I know I’ll never be the same. I know I’ll have to move on. But today it hurts too much. Today I need to just sit and stare out the window as I contemplate my life.

Today I feel numb. I feel anger. I feel sorrow. I feel confusion. I feel the loss of my active life that has been pulled into the darkness. The unpredictable waves of grief wash over me like a tidal wave. I hold onto my faith and hope for a better day tomorrow.

I know I need to let the grief happen even though it feels like I won’t survive it. How can something you can’t see hurt so badly? That’s the problem with MS. It’s not visible and it makes you feel alone.

I not only lost my mobility, I lost the joy of going places and taking part in the world around me. I lost being able to do as I please without a care in my heart to hold me back. I’ll never walk down the street to see my neighbor. I’ll never walk to the mailbox to get the mail. The loss is deep and wide like an ocean and I’m doing my best to tread water when you would expect me to swim.

It is in these times that I need to stop, take a step back, take a deep breath, and tell myself, “I’ve got this!” I need to hold my head up from my sorrow. And so I do. Now I sit on my couch and rest to recover from a time brought forth by my MS sorrow. I wish you could see me and enter the pain with me. I know I’m not the only one feeling this ache in their bones.

If we are honest for a moment… life isn’t easy. It can be really hard at times. But I want to encourage you, you can do hard things. We all walk through storms in this life: sickness, financial troubles, losing a job, losing a loved one, and more. It’s tragic and terrible, but even some of the most rewarding things in life can be hard… like running a marathon. Not to mention, even the little everyday things, like doing the dishes, having no gas in the car, running late, and spilled coffee, can be so hard and frustrating on days where everything seems to be going wrong. So how are you supposed deal with all of this?

Today I want to encourage you that the words you speak have the power to change your mindset. My mom always says “You can do hard things.” And in the midst of the hardship, remember you can do hard things and it too will pass.

Sometimes I think, what if I told myself words like, “you cannot do this, it is too scary.” Naturally, those are easier words to say but they don’t bring anything good to your life. Living with MS is hard, frustrating, scary, uncertain, chaotic, and depressing. What you are going through is hard. But you can do hard things, my friend.

I want to challenge you to be more aware of the words you are saying over yourself and others. Are they words of life or death? I want to challenge you to embrace this messy, hard life and face it head on. And just know, whether it is a moment of hardship or a season you are in, this too shall pass.

Conquer the MS Beast

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Earlier this week I tackled my plans to set up solar lights leading to my front door. Sounds easy, right? But I had lots of unforeseen problems. I gathered all the supplies needed to make the area beautiful but knew it would take a lot of time and patience to set everything up. The picture on this post shows what I did. I still need to get some plants for the area above the lights though. Right now it is a bunch of mulch but looks pretty even without any plants in it.

I had a few bags of white rocks to fill in the area around the lights but knew it wasn’t going to be easy to lay things out. I mapped out the light placement, dug up the area where they were going to be placed and laid down weed barrier to deter weeds from cropping up in the middle of the rocks.

One of my main issues while working was that I kept falling over due to my lack of trunk control. I couldn’t stay upright on the ground while I worked. It was challenging to keep still. I scraped my elbows and even my forehead once… ugh! Pulling myself up every time I fell over wasn’t as easy as it sounds. I ended up bruising my tailbone too as I inched my way back and forth across the sidewalk.

I feel accomplished with all the work that I got done. As I was working I kept thinking that bad things aren’t just happening to you and me… they’re happening everywhere. The way I see it, if I hadn’t gotten sick with MS, I would have never met you or had the opportunity to give you encouraging words to cheer you up.

MS challenges? Pfft, they’ve got nothing on me! I’m like a bulldozer, smashing through obstacles with sheer willpower. Nothing can extinguish the fire burning inside me to conquer the impossible. No matter how tough my MS life gets, I’m the kind of person who keeps pushing forward, defying the odds.

Setbacks will happen. I see them as temporary blips on my journey to greatness. Unleash your inner resilience to conquer whatever life throws your way. You have the power within you to create a life filled with strength, courage, and unwavering determination.

We are living in such dark times. I never dreamed of all the confusion, challenges and deception that is taking place around the world today. I had such high hopes for my future but I’m finding it harder to stay strong in the midst of the battle.

There are great things ahead. I really believe that. I refuse to throw in the towel no matter what life hurls at me or how bad my MS progression becomes. I’ve got an unstoppable determination to conquer the MS beast.

My multiple sclerosis decision

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After much thought, research and prayer, this year I made the decision to no longer use any MS therapy drugs to treat my MS. I have PPMS which in itself is difficult to manage, but from the beginning nothing has worked for me to help slow the progression. I remember using Rebif after diagnosis, then Tysabri, Rituximab (trial use), Aubagio, and my last was Ocrevus. All with intermittent use of Solumedrol when things got really bad because that was the only drug that would actually treat the inflammation that was occuring when MS is active.

Over all the hours sitting in the infusion center nothing has worked. I’m thankful that different meds work for Relapsing Remitting MS. Many people have been given a shot at holding off worsening progression. But the large costs involved with the different meds has gotten ridiculous. Thousands of dollars for one dose?!!

I talked with my neurologist at the beginning of the year of no longer using Ocrevus and she approved my choice. I will see her once a year to give updates but unless something really bad happens I won’t have to visit. I know a lot of people think that it’s a bad idea to do such a thing, but it’s my life and it’s how I want to live it.

My decision for stopping Ocrevus was because of how Ocrevus was fast tracked through trials to get FDA approval. The fast track part just didn’t sit well with me. We still don’t know the long term stats and even if they will be accurately recorded. I was uncomfortable with the cancer rate for people using it vs. the placebo… but there’s still no accurate data.

After Covid there were so many issues people were having with big Pharma and finding out all the get rich schemes that were going on around the world. I didn’t like it one bit. I never got the “clot” shot and am so glad of that. I did get a bad case of covid but just nursed myself back to health without doctor intervention. I’m told that makes me more immune than the vaccine anyway. People weren’t helped by it and secrets are still being uncovered about what happened over the last few years. It’s sad really. So much deception. So many secrets.

I know this will be a message that can get me banned online but I actually don’t care. Ban me if you must, but I will never stop talking about my life and what is happening. I know that there is more to life than meds, doctor appointments, MRI’s and the like. I want to live my life now… not later when things may get better. My now is important because that’s where hope lives.

And the next person that wants me to get stem cell treatment, cover the cost and maybe I will. But I’m told because of my progression I’m not a good candidate for that either. I’m not looking for the next miracle cure for me, I’m just looking to enjoy my life. If that’s not okay with you… oh well. I will keep smiling, laughing, sharing and hoping. That’s just a part of who I am.

MS can cause memory loss

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We live our lives in a crazy, seemingly unending fog. A fog filled with fears, doubts, unemployment, financial uncertainty, strained relationships, health problems, depression, confusion…so many difficulties and troubles. These events are common as you get older but it also happens due to multiple sclerosis.

Cognitive function is related to the number of lesions and the location of the lesions on the brain, as well as brain atrophy. The changes generally progress slowly. They are also unlikely to improve dramatically once they have begun.

Since the areas of damage are different in different people, the effects on cognition vary from person to person. You may have trouble remembering things or concentrating. Planning events can become difficult because it may require multitasking. One of the worst is when you can’t think of the word you are wanting to say so you end up playing an impromptu game of charades or you completely forget what you were saying right in the middle of a sentence. I know for me it can end in tears because things are becoming way to complicated for something so simple.

Sometimes you may feel like giving up because you don’t have the strength to stay afloat any longer. How many times have you felt like throwing your hands up and giving in? How many times have you felt like quitting because life was simply too hard? How many times have you lost sight of where you are going and not had the courage to hang on?

For me, I realized I woke up today and remembered my name. That’s a great accomplishment. I was able to brush my teeth without making a mess. I even got dressed instead of staying in my PJs for the day. All huge triumphs.

I want to encourage you today to never give up. Refuse to let your problems beat you. There is always a way to get through the difficult times. Always! Those times when you feel as if you are drowning and there is no end in sight, don’t let your inability to see the end stop you. Keep going. Keep trying.

When the struggle gets tough I want you to know that you can make it. I know you can. Fight through the fog, dodge the dizziness that happens, keep your focus on the end even when there is no end in sight. Don’t allow your inability to see stop you. Keep pressing forward one step at a time. You are closer to your victory than you think.

To those not living with a chronic illness

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Whoever you are, I fear you will never learn the injustices people living with a chronic illness endure all because they are facing the unknown and the unseen as their body is destroying itself from the inside out.

I fear the gifts and strengths a disabled person  carries within them will be dulled before they are able to share them with those who need them the most.

I fear you will cease to help a disabled patient in need because your own life is more important than the needed medical equipment, meds and even vitamins or supplements that would greatly benefit their lives.

I fear you will never know what it’s like to be disabled, abandoned, homebound, and not believed when sharing their troubles with those closest to them who should be their support…but aren’t.

I fear you may fail to see the worth of the disabled because it’s not a popular thing to do and it disrupts your day too much.

There’s nothing I can do to wake people up. Many won’t read this and others will simply discount it as nonsense, but one thing I know is that regardless of what troubles happen in my own life, whatever disabling symptoms arise and consume my day, I won’t quit. I refuse.

Positive affirmations that will change your life

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There’s so much evil happening in the world today that you don’t know who to trust due to the amount of disinformation taking place everywhere you turn. Sadly the spreaders of disinfo are determined to purposefully confuse, agitate and divide people. Don’t let their words and actions negatively impact you.

Whether you’re dealing with stress, need a confidence boost, or simply want to give yourself a pep talk, positive affirmations are a powerful tool for rewiring your thoughts and shifting the chaos in your day. They are phrases that are meant to uplift and inspire you to be your best. Repeating self-selected phrases can do wonders for your day. I find if I read through some of my favorite ones, my day gets better. It doesn’t change my troubles, but it changes me and what I’m focusing on.

One of the beautiful things about affirmations is that they are super easy to work with and you can choose the ones that speak to you—whether you found them on a list or you made them up yourself. It’s important to look for affirmations that really resonate with you and the person you want to be. I find writing them on post-it notes and placing them around the house for me to see helps. I have some in my bathroom on the mirror, some on the refrigerator and some even in my van on the steering wheel.

Repeating positive affirmations, mantras, and meditations are all great ways to prime the brain to make a change. The point of affirmations isn’t to magically cast a spell on your life but rather to start shifting you into a more positive mindset so you’re better able to line up your thought to help clear the chaos around you.

It can be easy to get caught up in negative thought loops, but with a few personalized and empowering affirmations paired with some honest self-reflection, you can slowly but surely start to unlearn and reshape those patterns.

Some Positive Affirmations:

  1. I release all fear that tried to tell me I should be somewhere different.
  2. I need only focus on right here, right now.
  3. I can get through difficulties.
  4. I’m doing my best.
  5. I am enough.
  6. I offer myself rest and relaxation.
  7. I am deserving of my own love and care.
  8. I care for myself because I love myself.
  9. My self-care is a priority.
  10. I treat myself as I would a dear friend.
  11. I am so grateful to be alive.
  12. I’m going to have a great day.
  13. Today and every day I am blessed.
  14. No challenge is too great for me.
  15. I wake each morning with a smile.
  16. I am strong.
  17. I am capable of overcoming anything.
  18. I am resilient.
  19. I can get through hardship.
  20. I am a wonderful person.
  21. I love who I am.
  22. I am courageous.
  23. I learn and grow through difficulty.
  24. I always pick myself back up.
  25. I will press on and go forward.
  26. I release what no longer serves me.
  27. I am proud of myself.
  28. I am living with purpose.
  29. Every day is a gift.
  30. Every day I embody the best version of myself.