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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.

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

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.

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.

Life won’t be easy with MS but it’s worth it

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When you get diagnosed with multiple sclerosis it seems like the world has come to an ended. For me it was something I knew nothing about. I had gone to the hospital because I couldn’t feel a good portion of my face, my vision was blurred and my right leg was going numb. I had an MRI and a spot was found on my brain that concerned the neurologist but he couldn’t determine what it was. He said I needed to be checked out in a few months to find out if I had a tumor or what was happening.

At that time I was in the middle of moving to Florida so I was hoping it was something that would just go away and my move would be uneventful. When I got to Florida it was 3 days later and I had lost vision in my left eye, was in a constant state of vertigo, the numbness of my right left was significant and had migrated to my right arm, was in the beginning stages of an MS hug and my world was coming to an end for sure.

I called a neurologist as soon as I arrived in Florida and amazingly they had an opening for me to come in. A second set of MRIs were done along with a spinal tap and a few days later the neurologist had the results. He sat down with me and said, the MRI shows over 6 spots in the brain and over 10 in the spine. I’m sorry to tell you but, you have multiple sclerosis.

I wasn’t given any information from the neurologist about what MS is, what can be done about it, NOTHING other than he said to me, “You will probably have a benign case.” What? Then he said, we will start you on Rebif and see how things go as we try to slow the progression down. That was that.

I was left on my own to figure things out and because I went to the doctor by myself I didn’t know what to ask or what to do. It was such a horrible feeling to do everything by myself. I left in a whirlwind and numb to the core.

Afterwards I dedicated myself to digging for answers and empowered myself through asking tons of questions even the hard hitting questions. After going to support groups and leaving feeling worse than when I arrived, I decided to reach out to others online with encouragement and my own odd sense of sarcastic humor rather than doctor speak and AA meeting type get togethers. I figured if I’m feeling lost and out of place then others may be too and we all just need to know that we aren’t alone. That was 10 years ago and although MS was well known, it wasn’t known enough by the public or even the doctors that are helping people with MS to cope.

It’s true that life won’t be easy afterwards. I prayed a lot and cried a lot but I made it through with a strength I never knew I had. Isn’t that weird how that happens? You don’t know you have something until you need it… and then, there it is.

You can get through anything life throws at you. I know you can. When everything crumbles down it give you a chance to build something spectacular out of the ashes. I guess the whole world is made up of things coming together and things falling apart. You never know what you may have. You may have beauty in the midst of your ashes.

Don’t lock yourself up distancing yourself from others. It seems like that would be the easy way to do things… to just shut yourself up and pull away. That’s our natural defense mechanism as humans. We build walls to protect our heart, but in the end, we find that the very walls we build are actually keeping away the people we need most.

Take a sledge hammer to that wall, start chiseling away at the concrete even if it will only remove one brick. Keep chiseling one brick at a time. That’s progress in the making.

Reach outside of yourself and do something for others. I find that when I am helping someone else in need, I forget about my own needs. It almost makes my struggle seem not so big. So, my challenge to you is to step out and touch someone. Do something to give back to others. Find a place where you can volunteer – a cause or an organization you believe in – and give all that you can of yourself, your talents, your time.

Sometimes we just need to step out of our own pain to realize that everyone has pain, and some are struggling even more than you are. A change in perspective can be the very thing that begins crumbling the walls and opening your life for a new found hope for tomorrow.

Memory, forgetfulness and multiple sclerosis

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I woke up this morning to my pillow on the floor in the middle of the room. I’m not sure how that happened. I would have loved to have seen that pillow fight. It must have been a doozy…”take that – WHACK – and that – POW.”

I think I am closer to discovering why I’m always tired. It must be all the parties I’m having in the middle of the night with all the toys, dolls and stuffed animals in the house. We must have pillow fights too. I think they are the ones zapping my memory. This way I won’t be able to remember anything when I wake up.

Last night, though, they must have forgotten to clean up some of the evidence by leaving a pillow on the floor. I wonder if they are the ones that drink my coffee too. I will make a nice, hot, perfect cup of coffee and the next thing I know…the cup is empty and I’m sure I didn’t drink it. I’m absolutely positive of it.

I’ve had a few other things disappear too: my favorite sweater, my car keys, my cell phone, towels, and the TV remote. The other day I even lost the eggs a friend brought me. He had a dozen eggs for me since his hens are laying now. When he left, I couldn’t find them. What? How did I do that? I had a few minutes of egg hunting but I found them on my entryway table. I don’t remember putting them there.

Just the other day I was taking a shower, washed my hair but when I got out of the shower I had a head full of bubbles. How did I wash my hair and forget to rinse myself off? That happens a lot for me. Either I wet my hair and forget to wash it or have the suds still in and forget to rinse before I shut the water off. I do all my memory tricks to try and remember but I seem to fail at it most of the time. Sometime I even forget to brush my teeth while I’m in the shower even though the toothbrush is right in font of me. Ugh!

I was writing down a list of things I needed at the store yesterday. I had the list half written, got distracted and went into the bedroom to get my shoes but when I returned my pen was gone. Poof. It just disappeared. I had to get another pen just to finish my list. I still have no idea where that pen went but if I ever go shopping without a list in hand, things don’t go very well for me. I NEVER remember what I’m there to get and always return home having forgotten why I actually went there in the first place.

I think a lot of my memory problems are due to my lack of sleep. I wake up exhausted and go to bed exhausted. I know I’m getting closer to solving my memory problems and forgetfulness. I will let you know when I find out what is going on. I would love to have a few hours of real rest to get my brain a bit more organized.

Now, where did my coffee go? It was right here beside me. Seriously, it was. I’m not making this up. It must have gotten sucked into a black hole. I think I may be stuck in some weird space-time continuum. Maybe I’ll be the one to disappear next? Ahhhhhhhhhhh

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.

I will never sugar coat my life with MS

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Have you ever had one of those days when you wished you could just curl up into a ball and hide away under the covers in bed because life was simply too much, too crazy and too overwhelming to bear? That was me yesterday. I woke up in tears… literally. That happens to me from time to time, only yesterday it hit me really hard. Harder than usual.

I hate when that happens. Sometimes no matter how hard I try to remain upbeat, positive and steadfast, I fail. It just goes to show that even people like me who strive to find the good in everything around them actually have times when they wish their out of control life could be put on hold and the pain had a pause button.

I’m human and I’m real. I will never sugar coat the difficulties of living with multiple sclerosis and I never want people to think that MS is a breeze to manage. Too many people out in the public don’t hear of the struggles we go through because too many MSers don’t talk enough about the truth of living with a chronic disease.

I am thankful for those living with minimal symptoms and that can handle the pain with ease at any given moment whether it be physical or emotional. But I know for a fact that’s not me. I talk about the struggles I face because I believe the more the public is made aware of what we experience, the more they will come to understand the reasons we have our unpredictable mood swings, cancel seemingly simple plans and spend so much of our time at home.

It’s not always easy for me to voice my needs. That’s because many times I don’t even know what I need in the first place. So when someone calls or stops by and asks how they can help out, I don’t always have an answer. It’s not because I’m being rude, antisocial or don’t want their help. Most of the time it’s because I simply can’t see past the pain in the moment to know what I truly need. That kind of thing requires too much thought and most of the time my brain just blanks out.

But I can tell you this, what ALWAYS helps is genuine care, concern, support and love. Those things help at any given moment and can be expressed through a simple “thinking of you” text, help around the house, offering to pick up some groceries, or just stopping by for a chat.

My greatest fear is to be forgotten in this fast paced, on-the-go world. It’s easy for that to happen too because many of us get to a place where socializing becomes  extremely stressful and is filled with too many uncertainties and obstacles.

Getting out of the house requires great planning and considerations that many people don’t really think about. Will the place I’m going to be accessible for my needs? Will I have quick access to a bathroom when needed? Will I be in a place where I can remain cool? If a meal is involved, will someone be there to help me cut my food? If I get too tired (which is normally a given in my case), can I leave early? Does it cost because I live on a limited budget and even small expenditures are impossible to afford?

Any number of questions have to be considered in order to leave the house. Some days those questions are easy to answer, other times they are simply too much to face.

I woke up yesterday with my laugh-box broken because the questions in life smacked me in the face as soon as I woke up. If that ever happens to you, give yourself a break and allow yourself the needed time to grieve. Grieving is a real part of living with MS, and it’s okay to have those moments. Just try not to stay there.

I had my good cry already yesterday. The world may never see my tears, but they will always hear my pain. I refuse to be silent in the struggle.

Whether you win or lose, at least you know who you are

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I actually struggle with a daily life of multiple sclerosis and all the unpredictable circumstances that threaten to overwhelm me. Some days I struggle just to get out of bed in the morning. Many times I don’t feel like doing the things I know I need to do which means they don’t get done. Lately for one reason or another MS has been winning the struggle.

Like yesterday I kept putting off taking my trash out and now I’m too tired to even think about it. My motivation just jumped out the window and I don’t even have the strength to chase it down. Before I go to bed tonight I have to take it out because trash pick up is tomorrow morning. We’ll see how well that goes. I wish I had little helpers for days like this.

It’s been below freezing temperatures here so I think that has something to do with it. My muscles just don’t work well with freezing temperatures. They have a tendency to seize up and getting them moving takes lots of extra work. Sometimes work that my body can’t seem to find strength for.

Discouragement sets in and rising above the funk is terribly hard to handle. I hate when my emotions get out of whack like that. It happens more than people would believe. I can go from laughing to crying in one second flat.

When I think about the circumstances, people, and events happening around me they are all manageable when I take them in little bits at a time. I have to be cautious so I don’t get overwhelmed. MS hasn’t changed, life around me has. I need to stay focused on what’s important, I need to look out for myself and I need to not feel guilty or get upset when things don’t go as planned.

I know that’s not easy. It actually takes a lot of hard work, but work that’s worth it. Next time you feel drained or emotionally out of whack, remember that you have a choice. You can wrap yourself up in excuses and self-pity, or you can choose to reach out of yourself and find the strength you need to keep going and rise above your circumstances. You’ve got it within you to do this. I believe in you. If I can do this… so can you!