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You are a survivor

Unlike many people, we’ve endured the diagnosis of multiple sclerosis. It’s a story some of you know very well. For me it was a quick process due to my MRI results and my prevalent loss of multiple bodily functions. But I know for others it was a long and arduous development with one appointment after another, yet nothing being found definitively sometimes for years.

Oh, the heartache. Oh, the worries. Oh, the concern of what is actually happening and when will it end. When the diagnosis takes place there is a moment of relief knowing that you aren’t going crazy. That there’s an answer to all your troubles.

Through it all, I have to say… you are a survivor. It took me a little bit of time to figure that out for myself. I was caught in such an out-of-control whirlwind that I couldn’t see anything around me that made sense anymore. But then I saw it. Hidden behind the appointments and around the newly discovered symptoms, there it was plain as day. I am a survivor. I’m not healed and as of today am not healed. But I have survived and each day I am surviving.

But why? That was the question I kept asking myself. Why have I survived? Why is this my life now?

I don’t know why I have lived through it. I don’t know how I have lived through it. But what I do know is that I have emerged stronger and with a clearer purpose. Whether you believe it’s God’s gift or just sheer luck… you have been given a second chance in life and I encourage you not to squander it or dwell on why you were chosen.

We make choices every day. Some are clear to make and some not so clear. But I believe we have been chosen to rebuild this MS community we find ourselves a part of as we rebuild ourselves. Some of us will rise to the challenge, other’s won’t. But we will all ultimately survive because we already have.

Let’s be honest. You’re a survivor.

I like how Lori Goodwin said it… “Even in times of trauma, we try to maintain a sense of normality until we no longer can. That, my friends, is called surviving. Not healing. We never become whole again … we are survivors. If you are here today… you are a survivor. But those of us who have made it thru hell and are still standing? We bare a different name: warriors.”

So fight on… my MS Warriors. Fight on!

With multiple sclerosis you can’t control your body

When I was diagnosed with multiple sclerosis, I saw all the good happening in my life disappear as if a sinkhole opened up around me. Many of the things that I had planned was just washed away. As the days passed I saw my lifelong career finished, friendships lost, finances depleted, and any motivation I had to try and further my life began fading away.

It was replaced with an overwhelming amount of depression along with hopelessness, dread, and fear as my body stopped functioning due to loss of mobility, body tremors, numbness, urinary incontinence, pain, brain fog, relentless fatigue, vision difficulties, and speech problems. Whew, that’s more than I ever expected and it happens to change moment by moment. No day or hour is the same and new problems kept arising.

I didn’t see anything good happening in my life. As the days went by and my progression worsened, I was convinced my life was over.  Forget about that long list of problems and issues I now face, if you’re like me, if you don’t forget the symptoms you are experiencing you will forget how to pronounce them or what word to actually use to describe them.

But I have to say that regardless of MS, I found I can accomplish anything I set I mind to. I end up laughing at myself for my crazy brain fog moments and try my best to take each moment to pause and breathe.

I found that with hard work and determination I can do anything. I may do it differently than in the past but who cares what I look like or how it’s done. I sure don’t. MS has rid me of having to appear put together. I drool, fall down, drop things, and forget anything someone tells me, but all I can say is oh well and just keep going.

Like, I can deal with my blurred vision if I look through just my right eye and don’t try too hard to focus when in motion. That wouldn’t end well. Between blurred vision and loss of color clarity in one eye, every day is an adventure.

I can walk with parallel bars if I hold onto them even it’s only for 5 steps, but hey, it’s 5 steps… yeah! If only my world was surrounded by them and followed me with a chair to sit in every few steps I take, I would be able to go anywhere on foot. But I’m proud of my ability to function in my powerchair called an iLevel which gives me the ability to reach things that would normally be out of my reach affording me the opportunity to set up my kitchen and bathroom to use the upper cabinets without the hinderances I had before.

The numbness in my body has become something that doesn’t subside. Although it’s there constantly, it’s something I have be aware of due to possible injuries I may get with sharp objects and extreme temperatures. I have had my fair share of burning myself without realizing I’m touching something hot, so I deal with if mostly by not giving in to the frustrations that happen when I get a bit absent minded. I have had broken bones, burnt hands and deeply cut fingers all because of it, but they are my battle scars and I wear them proudly.

Now the tremors are one problem that is a bit more difficult to deal with. I had an issue just last night when I was heating up a bowl of noodles and in the process of placing the bowl on my lap, my right hand had a crazy spastic moment accompanied by tremors and the bowl went up and fell spilling everything on the floor as well as on me. Of course when those kinds of things happen I dread the clean up, but while cleaning up I just laugh at myself thinking, I knew that would happen… which of course I didn’t, but it has just become more possible than random and I again end up in laughter mixed with tears thinking “it could be worse”. Then I made a peanut butter sandwich.

When you are filled with anger and start questioning your existence. Wondering why MS happened in your life? Why you’re facing the challenges MS brings? I can tell you that you’re not a bad person. God doesn’t hate you. You are going to be okay. Really… you are.

With MS and all that it brings, you can live life to the fullest. Don’t dwell on the past. You can’t change anything that has happened to you and wishing that things were different doesn’t help anything. As you have probably noticed, with MS you can’t control anything including your body and what it will do next, but the lack of control forces you to look at what you do have and truly count your blessings.

The best thing of all, you can control your attitude. Having a positive attitude in a negative situation will strengthen you and give you the needed determination to go further than you thought. And do it with  gratitude. You can accomplish anything. I believe in you as we go forward (sideways) together.

What being brave feels like

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

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

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.

Do you suffer from comparison-itis

Comparison is one of the greatest diseases in this world and we are taught to do it from birth. From birth our parents start comparing us with other children. Simultaneously, our teachers and coaches compare us with other children.

This is the greatest disease because everybody is born unique, and comparison is simply not possible. Just as we are all unique and cannot be compared, it is the same with illnesses. There is NO illness worse than another. ALL illness is terrible.

When a person compares someone who has multiple sclerosis with someone that has another illness… they are speaking from a lack of understanding and through filtered lenses. No one can know what someone is experiencing unless they crawled into that person’s body to feel what they feel, and experience what they experience.

One of the worst experiences is when you share your multiple sclerosis journey with someone and they proceed to tell you how their approach to MS or some other ailment is the only way you should be living? That you need to adjust your diet and get rid of meat, diet soda, and gluten. That because you go to a doctor and take meds, you are doing it all wrong? That you wouldn’t have the struggle you are having if you would just do things their way? That if you only ________ (fill in the blank) you would feel better?

It can get extremely frustrating when someone assumes they know your body and your journey better than you do. Comparing illnesses or even progressions of the same illness between two different people never works. When someone does the comparing like that, they have fallen victim to the greatest disease in the world… comparison-itis! But take heart, there is a cure… an adjustment of the attitude works 100% of the time.

Stop comparing, stop complaining… and start loving, caring, and nurturing one another.

Needing help for the annual website costs of Positive Living With MS. Any amount would be a tremendous blessing and give my blog and social media presence further reach to people living with multiple sclerosis. Caregivers, family members and fellow MSers have always enjoyed my writings. Many say that they would miss me terribly if I would ever go away. That I am a light of hope and encouragement that helps get them through their day. I was diagnosed with PPMS myself in 2013. Most of my writing is about my own experiences. I try to mix in humor as well as the reality of what life is like living with MS. Because of the hopeless living with MS, I get up to face another day. Because of them, I give of myself and keep pushing forward. Because of them, I won’t quit. Living with multiple sclerosis can be lonely at times, but I will do everything I can to to bring a little sunshine into a darkened world filled with despair… and to show other MSers just how special and important they really are.

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My Multiple Sclerosis Seussical World

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?

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

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

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.