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.

All aboard the multiple sclerosis express

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Ladies and gentlemen, this is the non-stop flight to a life with multiple sclerosis. On behalf of the Captain and the entire crew, welcome aboard.

In preparation for takeoff, please ensure all negative attitudes are properly stowed in an overhead bin. Please take your seat and fasten your seat belt.

At this time, we request that all stress, fear and worry be turned off for the duration of the flight, as these items might interfere with the central nervous system and communication processes of this aircraft. We request that all canes, braces, walkers and wheelchairs be secured until we have reached a stable altitude free from turbulence, wobbles and unsteady movements. We will notify you when it is safe to use such devices.

We remind you that this is a non-sleeping flight. Sleeping is prohibited, but we do have endless TV shows, movies and documentaries available for your viewing pleasure.

There are several emergency bathrooms on this aircraft. Please take a few moments now to locate your nearest bathroom. In some cases, your nearest bathroom might not be close enough. If you need to go immediately, I suggest you move quickly to ensure no accidents happen.

Blood tests and lesions are always being monitored. In the event of a relapse, an MRI machine will automatically appear in front of you. To start the scans, your head will be secured to a table and you will be inserted into a tight, claustrophobic tube. Although the machine is loud, you will be allowed music of your choosing to help drown out the sounds. Keep perfectly still without sneezing, scratching your nose or coughing until a uniformed attendant advises you it is all over.

In the event of an emergency, IV steroids are available and will be administered as needed. Be cautious of the metallic taste that will occur during this process. Sucking on hard candy helps so be sure to have a few in your baggage.

Meals will be supplied based on your needs. Dietary restrictions are adhered to. If you require texture friendly food we have a selection of soft foods that makes challenging meals easier to manage. Getting pre-portioned meals that you can pick out allows you to tailor your selection as needed.

We will hit turbulence along the way, but rest assured it won’t last. We will eventually pull above the storms and enter sunny skies. I expect good attitudes for our trip.

If you have any questions about our flight today, please don’t hesitate to ask one of our specialists. Thank you for flying the Multiple Sclerosis Express.

To appreciate the sunny days you have to go through the storms

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Multiple sclerosis is going to give you troubles at some point in your life. All of us go through them but everyone faces it differently. Many times it feels like it’s a constant struggle. Other times you may get a reprieve and have a moment of sanity and calm.

I have discovered that troubles play an important part in our life. They give us a chance to view everything happening from a different perspective, a new vantage point, a changed mindset. It’s important to appreciate the sunny days ahead because there will be stormy ones for sure. Those torrential downpours can be dreadful and overwhelming. No one likes them, but of all things you get a chance to clean out the weed once they pop up.

For me I saw the commitments that I made needed to change in order to simplify my life because they were overtaking me. I discovered that I was doing them just so I could get recognition for it. That’s just me being honest about it. I wouldn’t have ever told anyone my motive, but deep down I knew it was true.

Someone else could do a better job but I wanted to do it myself. That was so selfish of me. Once I gave up my commitments and made way for someone else to step into the position, my time was available for other things and I found myself actually enjoying the job the other person was doing in my stead.

There is so much in life to be grateful for:

  • Having air to breathe
  • The feeling of the sun
  • The smell of flowers, fresh-cut grass, and trees
  • The people we have in our lives
  • To be alive
  • For a beautiful sunrise
  • For each new day
  • That today is probably not the worst day
  • For a hot cup of tea or coffee
  • For the hard times, because they will help us appreciate the good times
  • For failure, because it makes us stronger
  • For the body—it carries us through this life
  • To be able to learn new things
  • To have a place to sleep at night
  • For time to experience life
  • For simply existing
  • That you will get to live today and hopefully tomorrow, too
  • For health, even though it may not be perfect
  • For family

Change your perspective a little bit. Let the rain wash away your trials, burdensome commitments and undue stress so you can clean out the clutter and get a clearer view of life itself. Next time you have troubles, change your perspective. Let it rain so it can ease your troubles.

It’s all about your mentality. If you see multiple sclerosis as your problem, I’m sorry to say the problem has just started but if you think it as an opportunity to discover the importance of life, your opportunity has just started. Keep at it. Believe you can get through the struggles, overcome the chaos, and rise above the hardships…. little by little keep at it and as time passes you’ll find you are doing it. You are a survivor.

Next time you feel unappreciated, overwhelmed, alone and stressed remember you have a choice. You can wrap yourself up in excuses and self-pity, or you can choose to change your perspective and view the opportunities ahead that come through believing in yourself and getting rid of anything in your life that is holding you back. Just keep going… there’s a good future for you here once you get through the storm.

 

No matter what happens, it will be okay

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I had a rough night last night. I’m not sure what happened but I spent my night hugging a bucket as nausea took over and I spent my time vomiting. I had a fever too and even had to turn my air conditioner on full blast for a time just to get comfortable. My stomach muscles worked overtime to empty out my system. So, now I’m empty but have yet to drink anything because last night it didn’t end well when I tried. I want a little bit of rest first before I try again.

That has never happened to me before to that extreme but I’m glad everything has calmed down a bit. I wonder if it was due to a new medication I took yesterday. It must have disagreed with me and sent my system into a downward spiral. I normally can’t take many new meds even aspirin or something disrupts my cellular response. At least I know what to avoid in the future.

That kind of thing happens a lot with me. Multiple sclerosis has put a kink in everything I do. I had forgotten how hopeless life can become when new problems happen out of the blue. At one time the difficulties had me hating everything… including life. But then my new MS friends changed everything. They understood the unusual reactions of my body. Maybe not really understood them, but they knew that they would happen and how to go with the flow.

Over time I have come to realize the life that I have. The spirit that I truly have. I may have troubles, but they won’t take me down for too long. Life is a gift. It’s special and beautiful. And life is what we make of it. No matter what happens even when it seems like the world is crumbling around you, if you have a support system with even just one friend you know that everything will be okay.

Life will go on, the sun will rise on a new day, and the rainbow will come out after the storm. No matter what happens, it will be okay. That’s my view of life right now. It may be crap at times, but everything will be okay. Troubles will come, troubles will go, pain will come, pain will go, life will expand and life will grow, I just need to make sure I’m nurturing it and filling it with hope.

Even if you can’t do something as you once could, you have to keep trying. Be calm, be brave, don’t quit on life and never quit on yourself. The world needs you. I need you. You are the reason I’m up today and sharing my thoughts and experiences. Thank you for just being you and accepting me for who I am. I’m doing the same for you. Gentle hugs coming your way… xoxo

Nothing with MS is smooth sailing

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Many people believe that those living with multiple sclerosis must be strong in order to live with the longterm unpredictable symptoms that come along with it. I see it as the way I’m coping with it because it’s the only choice I have, not necessarily a strength.

I usually end up feeling defeated, not strong. Especially when my pain reaches an outrageous level and I struggle to handle just getting through the moment. The fear that pops up in my mind is my worst enemy. It causes me to question almost everything about life… my purpose, my future, my existence and what tomorrow holds.

Nothing with MS is smooth sailing. You may feel like you’re on a roller coaster of emotions. Accepting what’s going on one day and angry about it the next. It may help to remind yourself that these feelings are normal and will likely ease with time. You will feel like yourself again as you learn how to fit your illness into your life. As crazy as it sound, what may be confusing at first starts to make sense. Give yourself time to learn how to take care of your illness.

I am in pain and deal with immense weakness every single day. I’m left unable to do many things because of it. There are different ways of dealing with all that MS throws at me. What people don’t know is that sometimes I lie on the floor in desperate need of a cold, soothing surface to help ease the discomfort from pain, neuropathy, and muscle spasms. I feel so exhausted that at times breathing feels like too much work. I don’t feel strong at all.

Sure, there are days when I feel better and try to do as many things as possible while I can. There are days when I feel stronger because I managed to rest for once. I do feel like my struggles have given me some strength to deal with the uncertainties of MS. The struggle, the pain – it’s all a part of my everyday life now.

An unpredictable life has become my new normal. When I was first diagnosed, I felt like I couldn’t make it through the hard times. I cried a lot, more than expected. I clung to the idea that things will get better. They had to. If I could just get through the current situation, I would have less of a struggle in life.

What it all comes down to in the end is that we are all simply doing the same thing… existing. I think what has helped me the most is remembering that MS isn’t going to go away any time soon, but it CAN be treated. It’s a long process trying to find what works for each person individually, but symptoms can be eased.

It takes time to adjust to the loss of your expected plans for yourself, and your feelings are perfectly natural and valid. So don’t be too hard on yourself for that.

I have found it helpful to focus on being grateful for the little things that take place. I treat them as bright spots or stepping stones to help me navigate through the uncharted parts of a life with MS.

Give yourself permission to enjoy life. Be consciously grateful for what you can enjoy in every opportunity you get. You will begin to feel happier and less broken by the negative things you can’t control.

Strength is made through the struggle. Through the experience of never giving up. Think of it this way…

It takes strength to get knocked down only to get up and keep standing.
It takes strength to not drown in your tears of pain and sorrow.
It takes strength to hold your head high when others don’t seem to care.
It takes strength to wake up each day with a smile regardless of the struggle.
It takes strength to find a song to sing when there’s no music to be found.
It takes strength to give it all you’ve got when you have nothing left to give.
It takes strength to not quit when everything within you is screaming at you “stop”.
It takes strength to look at tomorrow with hope rather than fear and doubt.
It takes strength to show your weaknesses in a perfect minded world.

It takes strength to do a lot of things, but mostly it takes strength to live.

I seem to be allergic to multiple sclerosis

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The immune system is made up of a complex and vital network of cells and organs that are created to protect the body from infection. Their entire purpose is to defend the body and keep bacteria, viruses and fungi out, and to destroy any infectious microorganisms that try to invade the body.

Growing up I never had an allergic reaction to anything. Food, bug bites, hot or cold weather, animals, dust mites, pollen, or drugs. The only thing I was allergic to was poison oak. It always seemed to spread by me just looking at it. I didn’t have to actually touch it… or in my childs mind I didn’t. Once I had gotten such a bad case that spread all over my face even causing my eyes to swell shut for a few days. After a visit to the doctor, some meds and lots of calamine lotion, all was well.

Since multiple sclerosis has taken up residence in my body, I have discovered that certain foods cause me to have increased symptoms like expanded weakness, spreading of numbness beyond the normal residual symptom from my initial MS troubles years ago, visual disturbances that have a tendency to keep me from being able to properly read emails without double vision, dizziness that meclizine doesn’t seem to help with. For me, over time, I have discovered those foods and know which ones to avoid. Each person has to find their own foods to avoid. It will always be different person to person.

I have also discovered my difficulties in balancing. I fall over trying to sit up. I can no longer do as my mom always said… ‘sit up straight and keep your elbows off the table.’ I simply can’t seem to do it unaided. I have cognitive problems too unlike anything I had before. I used to be able to read an in depth computer manual and be able to code computer programs based on what I had read without difficulty. Now I can’t put a line of code down without constantly looking at every cheatsheet available.

It just seems like every new symptom shows up out of nowhere and has a tendency to hang around for a long, long time… sometimes forever. I have also discovered certain drugs now give me an allergic reaction and I have to be watchful of them. My body just doesn’t seem to want to cooperate with my own body.

One thing I told the doctor is that I found I was allergic to ice packs. They always turn my skin red…(grin). I can’t get through a summer without them. They help me survive the heat. I’m also allergic to a lack of humor. There’s not enough smiles, giggles and laughter in the world of the chronically ill. You do know that it’s okay to laugh, don’t you?!

Over the years I have found that I need to take things slow and listen more closely to my body. It always seems to talk louder than I wish it would but thankfully it speaks up. Sometimes it’s the only reason I feel as good as I do. My body isn’t perfect. I fall down too much, pain visits way too often, confusion happens and brain fog seems to have taken up permanent residency. And although I wish life was different, it’s still mine and I refuse to give up.

You can’t give up on your life either. MS makes things complicated but not impossible. Impossible says it all… I’m possible.

Just like you. You’re possible too.

MS progression… what is it?

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I try my best to stay active because I know there will come a day when my body will be limited in the things it can do. My multiple sclerosis progression has definitely been a hinderance to me. I’m not looking forward to seeing more limitations taking place. That’s not being a pessimistic person but just letting you know the real things about MS. The word progression sounds like a good thing but progression means the disease advances and worsens over time. You don’t want it to progress.

For me, I used to be right handed. Not just in writing things down, but with everything I did. I was more skillful using my right hand. Now I have been forced to use my left hand. It has taken a lot of practice to teach myself how to write things down in a legible manner. I even had to relearn how to use a fork and spoon with my left hand. I still spill quit a bit of food on myself while eating but I’ve gotten better at eating without making a mess.

I had developed a tailbone pressure sore from prolonged sitting. It took lots of work with a physical therapist and using a better seat cushion to help remedy the problem. I already had a great air cushion in my powerchair but I needed something for my recliner and even my bed. After getting a gel seat cushion much of the issue was corrected. Thankfully I never developed skin breakdown near my tailbone area, but it was definitely sore to the touch.

The weakness in my legs have been getting worse and I have to be extra cautious when attempting to stand for longer than a few minutes. Just yesterday I fell when trying to transfer to my powerchair from my lift recliner. Trying to complete a stand-pivot was more than my legs could handle. Giving the floor a hug was not part of my plan for the day.

I drop things more than I hold onto them. I try so hard too. I no longer assume my hands will co-operate with me. Even trying to drink from a cup can cause me to spill it all over the place. That’s not an enjoyable experience especially when the drink is hot. Can I sue myself for injuries due to burning hot coffee? I don’t think that would work though.  It would end up being a settlement for pain and suffering and only result in a better sippy cup.

Other MS progressions that have increased for me over the years include vision issues with depth perception being one of he worst I’ve experienced, balance and coordination difficulties making simply sitting up without falling over a problem, being able to chew and swallow my food ends up in a choking struggle, bladder issues requiring the removal of my bladder to make life easier for me to manage, impaired sensory function making it imperative to be more watchful when doing everything especially when it comes to cooking and showering. I have burned myself from a hot shower more than from hot coffee.

But although MS is continually progressing you find you’re having to adjust life in ways you simply didn’t want. Some of those changes hurt and some are easy, but never let the fact that you have to make a change get you down. Realize that changes are going to happen and decide to just go with the flow.

Embrace the changes no matter how hard or significant of a change they are. You will find that over time the addition of tools to help you through your day or the removal of things that have the potential of making life more difficult is not something to be afraid of. Change is okay. It doesn’t make you less of a person because you need added tools or different things to help you out. You are amazing just as you are no matter what you can or can’t do, or what equipment is needed in the process.

The multiple sclerosis storm you are in

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I went to bed with rain coming down and woke up to the same. It’s a rainy day out. I can hear the pitter patter of the drops as they hit the roof. It’s definitely going to be a wet kind of day, and I have a few appointments to go to so it looks like I will probably be getting wet in the process.

Yet even though it’s raining out, I know it’s not raining because of me. It’s not my fault the clouds are dumping water out and mucking up the day. There’s nothing I can do about it either. I can’t control the direction it sends me in or the troubles it leaves along the way.

It’s the same with living with multiple sclerosis. It sweeps into your life and attempts to take you out. You do all you can to tame it and make life manageable but it’s not easy. The destruction left behind can seem impossible to handle. You try to simply make it through your day. Life has become a moment by moment experience. Some moments are good, some bad and some are downright horrible. I want you to know that MS is not your fault. Just as with a storm, you do the best you can to stay safe and weather the storm.

I like to think of rain this way: “Rain makes me feel less alone. All rain is, is a cloud falling apart, and pouring its shattered pieces down on top of you. It makes me feel good to know I’m not the only thing that falls apart. It makes me feel better to know other things in nature can shatter.” (Lone Alaskan Gypsy)

Today you may feel like you are wading your way through a storm. Clouds are hanging over head and mucking up your day. It’s dark and rainy and there’s nothing you can do about it. You may be awaiting test results or facing a family crisis, you may be drowning in financial difficulties or surrounded by loneliness, your heart may be breaking or your mind may be filled with worries and there’s nothing you can do about it…except…

You can decide that no matter the rain or darkness, you are going to have a good day. It really is that simple. Storms come and storms go. No storm lasts forever. The storm you are in, it will end and the sun will come out again. Some storms are longer than others, but they all come to an end…every one.

You get to choose whether you will laugh or cry, sing or sigh, bend or break. You also get the amazing opportunity to dance in the rain and stomp through the puddles that get left behind. No matter what you are facing, you don’t have to go through it alone. Share your umbrella with someone else.

I can guarantee you that if you take a moment to peak out from under your umbrella, you will see someone else walking in the same direction you are without an umbrella. Lift yours up a little bit higher and offer to hold it for them too. Two walking together in the rain is better than one. You could even turn it into a party and see if more people could fit. It won’t make the storm pass quicker, but it will make the time more enjoyable as you support one another.

If you just so happen to be one of the umbrella-less people right now, you don’t have to keep getting poured on. Look up. You will see umbrellas everywhere that are willing to share. Reach out and ask for help. Sometimes that can be the hardest thing in the world to do, but in the end it keeps you from getting soaked. Don’t be ashamed or embarrassed. It really is okay to ask for help. We all need each other.

Then after the storm has come and gone, get out there a jump in the puddles.

A monster called multiple sclerosis

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Growing up I remember being afraid of monsters. They lived under my bed and were going to eat me. I had to make sure not to hang my feet or hands over the side of my bed while I slept. Somehow my magic blanket protected me. It seems monsters are afraid of blankets.

As a grown up, my monsters changed. They still try to scare me but in different ways. I have to be sure to keep my heart and mind protected from their scare tactics. That’s where they try to gain control over me.

Fear is a powerful thing. It can paralyze you and steal your peace.  I found the biggest thing when it comes to monsters is to be careful in how you look at them. The monster called multiple sclerosis had crept into my life and tried every tactic it could to scare me and keep me from living.

What if I end up in a wheelchair? What if I die early? What about all the pain and uncomfortable moments that will happen? So many unanswered question that have a potential of scaring anyone living with a chronic illness. But the what if’s aren’t guaranteed and most of the time they don’t happen as bad as thought or even at all.

At first fear was good at keeping me from doing things that could hurt me but then I realized I was able to do more than I thought. The only voice I should be listening to is the one in my own heart. No more shadowy whispers or monster growls to keep me from doing things or from being myself.

Haven’t we all allowed fear, at one time or another, to become bigger than the reality of life itself? As a child, I allowed fear to take from me, but what was I truly afraid of? A monster, a shadow? Really?

There’s always going to be monsters in this world. It doesn’t matter where you are or what you’re facing but I promised myself I would never let monsters scare the life out of me again. And that’s how I live my life. Just remember that it’s ok to be sad and it’s okay to be afraid.

I still catch myself thinking, “There is always tomorrow. And what will tomorrow bring? Will it have monsters and creatures and scary shadows?” I can’t tell you what tomorrow will bring… but tomorrow doesn’t have to be scary when hope is lighting the way.

When you gotta pee

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Sometimes I laugh at myself, like yesterday when I accidentally dropped freshly ground coffee all over me and the kitchen floor. Laughing about it was so much better than crying. Besides, tears mixed with coffee grounds is therapeutic, at least it seemed to be for me as I laughed vacuuming it up. All I kept thinking was spilled ground coffee sure do suck! haha

I have accidents all the time. I trip, drop things, fall, misplace items, forget appointments, and have lots and lots of mishaps. Accidents seem to be synonymous with multiple sclerosis. Some of us have more than others, but they seem to just be a part our life now.

Since surgery at the beginning of the year to remove my bladder, a stoma was created from a section of my small intestines to allow my urine to be managed. I wear a pouching system that is attached to the stoma around my belly area. Even though I can’t pee in my pants like before, I still have accidents. Not the oops, I peed in my pants kind, more of the oops, the pouch adhesive has loosened causing it to leak unexpectedly all over me.

I would much rather have a leaking pouch that I can tame by holding my hand or a cloth over it until I can remove it and replace it with a new pouch than face a flood because I wet my pants. I have a bit more control over a leaking pouch than I ever had over my bladder. When I had to go, I had to go. I had no control over the muscles that made my bladder function.

I’ve gotten really good at changing my urine pouch and can have a new one attached to my stoma in about 10 minutes. For me, I change the pouch system about once every 4 to 5 days. It took time for me to get used to changing it and a lot of practice trying out different samples sent to me from the companies that make pouches, but I finally found the ones that seem to work the best for me.

One good thing about my life now is that I don’t have to rush to the bathroom every couple of hours due to a faulty bladder. Now I just routinely empty my pouch as it fills up. No more accidents in the middle of the store when I’m out and about and no more sleepless nights because of multiple bathroom trips to go pee. I normally attach a night bag to my pouch so I don’t have to empty it while I’m sleeping.

Accidents are going to happen no matter what I do. Let’s see if I can make it through the day today without one, but if I do have one I will make sure to find some fun and joy in the process. I hope you are able to do the same thing. Don’t take life too seriously.

Remember that you weren’t given an instruction manual along with multiple sclerosis. You can only do the best you can with the information you have at the time. So, don’t be so hard on yourself. You’re a work in progress.