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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.

The ugly side of multiple sclerosis

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I hear people talking about multiple sclerosis like it’s no big deal, after all the girl down the street has MS and all she had to do was just change her diet and take some organic supplements, and it all went away. So I must be doing something wrong. Really? I wish that was true.

MS is not a figment of my imagination. It’s real and despite everything you read about it online, it’s not curable yet. Just so you know, it’s not caused by a lack of blood flow to the brain, or caused by not eating right or not spending enough time outside. It’s not even because I don’t exercise enough, have lived a bad life, or haven’t been praying enough.

If you could see the inside of my brain and spine you would see the damage in there. It looks like a battlefield with destruction all over the place. My central nervous system has been attacked by my own immune system which I call the myelin munchers.

You see, our nerves have a coating around them called myelin. It’s a lot like the wires hidden in the walls of your house that supply power. There’s an insulated coating around each wire to keep it protected.

Well, the coating around my nerves have been eaten away. As soon as they were exposed, my broken nerves started shorting out and causing all kinds of problems. That’s why my legs don’t work, my vision is blurred, my muscles spasm and twitch, and even why my body is weak.

I wear a smile most of the time but that doesn’t mean the disease isn’t there, it just means I’m doing a pretty good job at covering it up. I should win an Oscar for my performance everyday when I go out in public.

You see the mask that I wear but let me tell you a little bit about what is actually being covered up. Let me tell you  about the ugly side of MS. Too much of the world doesn’t know that it exists.

Relapsing Remitting MS (RRMS) is one type of MS. A majority of people diagnosed with MS have this type. I got to be one of the lucky ones to have a progressive form of MS called Primary Progressive MS (PPMS). Mine just gradually and continually gets worse. I don’t experience times when my MS symptoms subside or get better.

In the back of my mind I know that one day my future will be drastically different than it is today. Although today I may be moving around ok, tomorrow I may not.  I’m the same person I was before MS came along but I have learned a lot about myself in the process.

MS has taught me to be more caring, compassionate and loving towards others. It has humbled me. No one wants to be in a place where they have to use a wheelchair just to get around in their everyday life or need someone to wipe their butt when they go to the bathroom. That can be really embarrassing. Even needing help to take a shower is a humbling experience. Those are not things people like to talk about.

They don’t talk about the bladder problems that happen with MS either. Some people need a urinary catheter because their bladder has stops functioning as it should. They wear a urinary bag or pouching system every day just to empty the urine their body creates.

People don’t talk about the fact that your breathing scares you. Sometimes the muscles across your ribs tighten up keeping you from being about to get a deep enough breath leaving you gasping for air.

It’s not said enough that sometimes when you are eating, things can go down the wrong way because your throat doesn’t want to open up properly. Or the fact that you can no longer drive without causing an accident due to poor depth perception or numb limbs that make using the gas and brake pedals difficult. Or that you can’t remember thing without making a ton of notes but even with notes as reminders, many times you lose the paper you write down it on. Or that just pouring yourself a cup of water can bring you to tears because you can’t hold the cup without trembling and spilling it all over the place.

Those are the things people don’t talk about.

The thing is, I cry, I scream, and I struggle behind closed doors. I’ve been judged, stared at in public and have even lost friendships all because of MS. But regardless of everything I’m facing, no matter what happens to me or how down I may feel, I’m a fighter. Every morning I wake up in this battle. It’s not one I chose but it’s the fight I’m in so when I wake up, I come up swinging with all the strength I have.

Sometimes I’m weak and MS wins but even on my worst days I’m a winner. It’s because I never quit. I have the courage to carry on even when my strength fails me. I may never feel better but the battle isn’t over and neither is my life. I’m simply living it differently than I used to.

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.

Multiple sclerosis is your reality

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I know your heart is heavy. Right now you are on the verge of tears…tears that have been collecting deep in the spaces of your heart and flooding over into your mind. You have met reality face to face and you don’t like it one bit. Multiple sclerosis is your reality. It’s real and you feel it deep. You are finding yourself overwhelmed and challenged in every area of life, and you feel the weight of simply getting through today to be daunting. Laundry has piled up and errands are on hold as you sit alone feeling like you’re about to break.

You don’t feel very brave right now. Sure, when you go out the door with a smile plastered across your face, you are brave. But that’s a mask you wear out in public to cover the pain. Here you sit, alone, and the mask comes off. Your thoughts are running wild and the tears begin to fall.

Where’s your brave when you feel numb to the core? Where’s your brave when all you see is clouds before you and not one ray of sunlight can be found? Where’s your brave when you run into walls, trip on invisible obstacles, can’t walk across the room, choke on air, your body trembles, and you drop everything you try to hold? Where’s your brave when you feel defeated? Where’s your brave then?

I want you to know that you are brave even when you can’t feel it. There truly is strength in you. A strength so amazing that even you don’t know it’s there. You’ve held on this long…that is brave. I know it’s terrifying. I know it’s not easy. You don’t see it, but I sure do. You are a brave multiple sclerosis survivor in this fight.

Rise up and be confident in who you are. Don’t give up just because the road is hard. It takes a strong person to wake up in the morning and face a new day surrounded by challenges, pain and uncertainty…and you are doing it.

Discouragement will happen, exhaustion and stress will find you, but don’t allow your heart to grow weary too. It’s okay to let the tears flow. Sometimes that’s all you need to do to lighten the load. Let it go and find your brave today, because you are brave! I can see it.

Me, MS, or why I can’t just get over it

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Multiple sclerosis depression… it’s a real thing and it happens. Not even the happiest, peppiest, most positive person in the world is exempt from it’s effects. It can sneak up on anyone. It’s not known exactly why multiple sclerosis has a higher rate of depression than other chronic illnesses, but it’s believed to be caused by changes in the brain’s functionality along with the emotional stresses of unexpected progression, loss of mobility, pain, social isolation, and financial struggles.

Those of us living with MS are fighting our bodies every second of every day. At times, we feel as if we have slipped into a raging river and the current is pulling us under as we fight the rapids in order to pull our head up far enough to get a breath of air only to sink yet again. We find ourselves lying in our bed with tears flowing, completely worn out, weary, and with  awful thoughts spinning out of control.

All those “what if” thoughts, doubts, fears, and questions flood our minds. They have a way of overtaking even the smallest amount of hope we have left and leaving us with only a tiny strand of hope to pull us up to safety.

That has happened to me more than once. During those times, I find myself feeling alone and worthless in a world that doesn’t seem to understand me, MS, or why I can’t just get over it. It always catches me off guard almost as if I got sucked into a vortex filled with every mixed up emotion imaginable and it pulls me deeper into the abyss of depression. It’s not easy pulling yourself out of such turmoil and confusion. This kind of thing it invisible to the rest of the world, so they just don’t get it.

What I have learned most during those awful, vulnerable times in my life is that I need someone there with me to help me process those crazy random thoughts that I find bouncing around in my brain…not with advice, opinions, or judgements, but with a hand to hold, an ear to listen and a box of tissues near by. Oh, and maybe some ice cream or chocolate.That somehow always helps.

Don’t beat yourself up just because you are having a bad day, week, month or even year. Depression is real and sometimes it’s really, REALLY hard to overcome. It takes guts to talk with your doctor, friend, counselor, spouse, or family member about what’s going on inside your head and heart.

Don’t allow guilt to creep in and cause you to think that you can’t open up about what’s going on. Sometimes we need help to weed through everything that’s going on in our life in order to find hope once again. And just so you know, seeking help is not a sign of weakness. It takes great courage to admit you have a need.

Don’t ever be afraid to ask for help. Sometimes that’s the hardest step you will ever take…but you can do it. I know you can!

Make the best of life when it throws lemons at you

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It’s really nice when my couch lets me out of the house. I try to spend time outside on nice days. Not a lot of time, especially if it’s hot out, but right now it’s still cool in the mornings so that’s always a pleasant time for me. Yesterday, I was able to get out and enjoy a bit of sunshine which was a nice welcomed treat for me.

As I was sitting on my back patio, I noticed lots of new flowers starting to bloom. There was a sweet smell of honeysuckle in the air and the birds were singing their songs from high up in the trees. Everything seemed alive. There was no traffic, no busy people, no distractions, just a calm and peaceful morning for me to enjoy.

I noticed one flower in particular that looked somewhat out of place tucked away in the corner of the yard, but amazingly beautiful with a brilliant mixture of red and orange colors. Maybe it was the way the morning breeze was blowing against the flower’s pedals or maybe it was just my imagination, but I am almost sure that I saw that flower stand taller as I watched it. It seemed to square its shoulders back and hold its head high as if to say, “Good morning, I’m glad you’re here!”

The thing that made this flower’s beauty stand out more than anything else in the yard was the fact that it was growing right in the middle of a compost pile…forgotten and alone…sitting in a pile of broken down waste and scraps.

Have you ever heard the saying “bloom where you’re planted?” Well, this flower was doing just that. It could have decided that life was simply too hard and given up on ever becoming anything of use, it could have decided to bury itself even deeper into the compost pile and hidden itself away forever, it could have decided to keep its beauty from ever being seen by me or anyone else, but this flower was determined to shine…and shine it did.

That flower decided to push its way through all the crap it was given and become a thing of beauty regardless of where it was stuck in life. No one but me, a few birds that were fluttering about in the trees nearby, and maybe a worm or two saw its beauty, but if only for us, it fulfilled its purpose! That one flower gave me a smile. It made a difference.

You may feel like that flower today, like you’re stuck in a stinky, smelly, horrific pile of crap, yet no matter how ugly or smelly things may be in your life, all that junk has an incredible way of producing amazing things of beauty. It may look like garbage to you, but to me, I see something incredible. I see a beautiful you in the making. I see a strength rising up that says just watch me shine…I’m going to make it.

Don’t lose hope. There is still a lot of good to come from your life. You are very much needed. You are not a mess. Because of you, someone’s day will be brighter. They will see you making it even though you’re in the middle of an impossibility and be encouraged by your strength. It’s time to square your shoulders back and hold your head up high. Don’t underestimate your value. Make the best of life when it throws lemons at you and show the world just how amazing you really are.

Finding the rainbow in the storm

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I woke up Monday morning to a strange sound coming from my bathroom. I wheeled myself into the bathroom and found water pouring from the bottom of toilet tank. There was at least a half an inch of water on the floor. I shut off the water behind the toilet, opened the tank and found the entire flush valve system needed to be replaced due to a faulty rubber washer. Not something I wanted to tackle.

I went to the local home improvement store and bought a new one then came home and changed out all the needed components. It was then that I discovered I needed a replacement braided supply line for the toilet that connects the water to the toilet. The plastic nut attached to the hose had broken off in the night. That was one of the reasons for the leak. I made a second trip to the store, made it home, fixed the toilet, opened the water line, adjusted the water level in the tank and all is well. No more leaks.

To repair the leak I had to mop up a ton of water from the floor. I got more wet cleaning up the floor than taking a shower. Of course I had to take a shower afterwards anyway but wasn’t planning that kind of adventure.

The unexpected happens though, doesn’t it? Sometimes it can be really sneaky and creep up on us, but it happens. Each day is a journey into the unknown. One day you may wake up and discover the sun shining and the next day find yourself in the middle of a storm that is spinning out of control. That’s just how life is. Add multiple sclerosis into the mix and it becomes an outright adventure.

We have gone through our entire existence up until this point in time knowing that each day is unique and filled with change. We try to find ways to predict those changes, but even the weatherman gets it wrong most of the time. Living with MS is no different.

One day you may wake up with a new symptom starting to develop…but you may not. You may notice numbness increasing…but you may not. You may feel more weakness…but you may not. Just as with life, MS changes day to day, and sometimes minute to minute.

When you are newly diagnosed, that can be a scary thing to face. Change isn’t easy. But as time passes you begin to find a routine in a life of change. As strange as that sounds, you do.

This morning, don’t focus on the storm MS has brought your way… look for the rainbow. All storms have them if you know where to look. Put your rain boots on and go splash in the puddles. Find something to smile about. Do something you enjoy. You might get wet in the process, but that’s all just a part of living.

Then dry yourself off and find something to smile about. I’m smiling about having the sense to be able to repair my toilet without calling a plumber to help. No huge bill to pay. Anytime that kind of thing happens it makes me smile.

You’ve made it this far in life with multiple sclerosis

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You’ve made it this far in life living with multiple sclerosis, so what makes you think you will fall short of your goals now? Whether they are goals of being able to care for yourself, goals of using your muscles to get around without burdening others, or goals of hanging on to sanity in a crazy mixed up world.

You have had your fair share of those who delight in foreseeing problems in your life because of MS. Those who actually enjoy criticizing any failures you’ve dealt with regardless of the cause, and freely voicing their opinions while dwelling in the comfortable safety of theory, unbelief and inactivity.

Words, words, and more worthless words have been used against you along your journey. When will you finally decide to believe in the beauty of who you are? When will you choose to laugh at all those silly careless words that have been spoken against you and toss those words away… rising above the shadows that loom in the distance?

If it is safety you want, then you will do far better by removing any distractions or obstacles in your way so you can follow your heart. Has experience not taught you this. Besides, warriors like us have always seen safety in a different light than those who try to make a living out of exploiting the disabled. Yes, those people do exist.

Laugh at the threats that come your way. Laugh and get on with enjoying your life. I do. Follow your heart and follow your dreams… you have great ones to follow.