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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.

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.

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 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.

Taking the easy way

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I had a strange day the other day. I’ve been getting ready for a new living room set that I’m supper excited about. I purchased a blue sofa and love seat along with a beautiful glass top coffee table and matching end table. Most sofa sets are either grey, brown or beige so to find one that was a striking blue color called ink sold me on it. It’s a medium blue much like royal blue and it’s supper striking.

One of the pieces I’m excited to get is a motorized recliner which allows me to recline but also has a lift in the seat making it easier for me to get out of. It has a massage setting too and a way to plug my computer and phone in for charging. The greatest thing about it is that it’s made for someone over 6′ tall so it will be comfortable for me. No more having my feat hanging inches off the end of the foot rest.

I got a notice that the recliner had been delivered to my front door but when I looked, there was no box at my door. I let the company know that I didn’t received it so they issued a refund for me. I told them that I would be reordering the chair because my heart was set on having it.

Here’s the strange thing that happened. Yesterday someone came to my front door to tell me that they received a package that was mis-delivered to them with my name and address on it. They live streets away from me. The box says 1 on 2 for a recliner. Box 2 will arrive today. I’m excited. The company will have to make sense of the refund and the new order I’m wanting, but at least I won’t have to wait weeks for a chair to come. It’s already here. Somehow things worked out for me.

You know, I was thinking about all the things we use to help us live an easier life when a disability comes along making everything more complicated. A chair that helps lift you up…now that’s amazing to me. Funny thing is many items aren’t designed for the disabled. I’m always looking for items that help  make life easier. Not because I’m lazy but because everyone needs help even if they don’t say or think they do.

Am I trying to take the easy way out by using a chair that lifts me up to help me stand or transfer to my wheelchair? Since I can’t just stand up like a healthy person, the help saves me time, energy and at lots of tears, so yeah… I’m taking the easy way. Live in my body and let me know if it’s really the easy way. It’s actually quite complicated… never easy.

The way I see it is the more options I have at helping me to do something means hope and I need lots of hope living with MS. Having hope is having an expectation that something good will happen in the future or that something bad won’t happen. It won’t solve all of society’s problems but will bring you some added sunshine in the darkness.

I see a few rays of sunshine lighting you your day today. Don’t get too discouraged when you look around. There’s always hope. I’m believing for the best for your life today.

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.

An MS life isn’t so simple

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Most people don’t have to think about the things they are doing in life like answering the door when an unexpected visitor arrives until something like multiple sclerosis comes along and messes with our ability to do those things. Sure, we have to juggle things around in order to fit the sudden changes into our day and most of the time those shifts are not so simple to make. It’s that way with just about everything I do.

I’ve never been a big fan of running errands. Who would have thought the mundane chores of grocery shopping, going to the bank or the post office, and even picking up lunch could be so daunting. For me, in order to run errands, the timing has to be planned perfectly to ensure I have the energy for the remainder of my day. Not planning can end in disaster…meaning, can end in me vegging on the couch for hours just to regain enough strength to help me cope with the rest of my day. Some errands can set me back days…not just hours.

I have to think about doing things more than people should. For example, take the act of walking. That may seem like a strange thing to have to think about, but when I stand up to try and walk, I have to make sure I have the proper supports around me to keep from falling down. Then I have to concentrate on each step, movement, leg shift and foot lift. It takes GREAT effort and tremendous thought to do something as simple as walking and sometimes I don’t have the strength to do it. My muscles turn to jelly and won’t allow it.

If I need something in the kitchen, I can’t just jump up and get it. If I drop something on the floor, many times that item will remain where it landed until I have the strength to reach down and pick it up. By the way, that can mean it will remain on the floor for days. If someone comes to the front door, it takes so much energy to transfer to my wheelchair and make my way to the door only to find out it’s a solicitor wanting me to try their restaurant take-out service, that’s why most of the time I just don’t answer it.

When MS comes into our lives, the things most people take for granted become something we are grateful to still be able to do. We know that one day everything will change, the unexpected will happen, life will shift and simple will no longer be simple. No amount of planning prepares someone mentally for those kinds of changes.

If you find yourself frustrated because you need to fill up your gas tank on your way to work today or because you need to pick up some cheese for tomorrow’s spaghetti dinner, stop and remind yourself that you are still able to do those things…and be grateful for the little things no matter the inconvenience.

Don’t take anything you are still able to do for granted. Those things may take extra time to work through or you may have to get creative in the way you do them, but you will have accomplished something greater than great when you do complete it. You will have done something some people are no longer able to do.

Don’t give up, don’t give in and keep going while you can. That’s what makes you an MS Warrior. Plan B, C, D, and sometimes even Z, ZZ, and ZZZ have become a part of my everyday life and I’m okay with that. I will keep trying, keep going, and shift with the changes until I no longer can.

You didn’t cause multiple sclerosis in your life

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You didn’t cause multiple sclerosis in your life by the foods you choose to eat or not eat, by the supplements you choose to take or not take, by the DMTs you choose to take or not take, or even by the prayers you choose to pray or not pray. You didn’t do anything wrong or even live a bad life that brought about such terrible circumstances. That’s all just a bunch of crap… and it makes you feel like crap as well. No one deserves to be made to feel like that.

You didn’t cause it, can’t control it, and can’t cure it. It’s not your fault if other people leave you because of your illness or even because of how you are dealing with it. It’s not your fault that you are sick. Don’t even let that thought take ahold of your heart.

You are so much more than MS. It’s something you have been diagnosed with… and that’s all. It’s not your name and not who you are. Don’t forget that.

You don’t have to hide the fact that you have MS in order to make others comfortable and you don’t have to be an inspiration to others every time you share your life story. Many times you just want to scream and wish others could see just how difficult an MS life is. They never see the pain that overwhelms you, the despair that sets in at such inopportune moments, the hopelessness you feel at times, or even the tears you wipe away when no one is around.

You’re allowed to stay in bed if you can’t get up to do anything but go to the bathroom. You’re allowed to have bad days. You’re allowed to wish life was different. You’re allowed to miss the old you and all the things you used to be able to do.

But one thing you have to do after a short time of pity-party moments is remind yourself just how amazing you actually are. Take a break from life, take a deep breath and take care of you. That’s not being selfish, that’s caring and being kind. As airlines like to remind us, it’s important to put on your own oxygen mask before helping others do the same because if you run out of air, it becomes a lot harder to help anyone, including yourself. Treat yourself as a friend.

Home should be your safe place, your sanctuary. Consider filling yours with what brings you joy, whether it’s live plants, pictures of happy memories, or art you love to look at and remember to smile. It always helps.

You will get through the tough times and come out with a strength that you never realized you had. You’re getting stronger even right now. Hang in there. You got this.