Multiple sclerosis is not a death sentence

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I think we all go through a stage at the beginning of being diagnosed with multiple sclerosis where we think life as we know it has ended. I used to tell people that MS is just two letters in the alphabet, it’s not a sentence! Sounds good to say but when you get a closer look at it by living with it, that kind of thinking changes.

As time went on I thought of it as more of a death sentence than simply 2 letters because it seemed to be the death of everything I knew. My mobility, my ability to feel and function in a regular capacity, the decline in my cognitive function, just so many changes to my bodily usage had decreased and caused me tremendous difficulties. So much so that I felt less human than anything else.

And with my bodies ability becoming so much worse it was more of a death sentence to me than anything else… yet when looking at all that I have endured I don’t see it as a death sentence at all. It more of a faster path to death but not a sentence. Life still happens and there are still moments of happiness and joy in the process.

You can be happy, even in a “broken” body. It may not seem like it now, but the truth is that you can build a happy, meaningful life for yourself, even if you’re never able to walk, hear, or even see like you used to.

It goes without saying that your disability has already changed your life in big ways. But with commitment, creativity, and a willingness to do things differently, you can reduce the impact your disability has on your life.

While you can’t go back in time to a healthier you or wish away your limitations, you can change the way you think about and cope with your disability. You are still in control of your life and there are many ways to improve your independence, sense of empowerment, and outlook. No matter your disability, it’s entirely possible to overcome the challenges you face and enjoy a full—and fulfilling—life.

Don’t let MS control you, you be the one in control. You’ve got this!

Never regret… today’s a chance at living

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I woke up this morning, made my way to the closet to get dressed and the first thought that popped into my head was “Ugh, another day with multiple sclerosis.” As soon as that thought showed up I knew it wasn’t a wonderful cheery thing to be thinking. But hey, I’m human and thoughts like that happen.

The day hadn’t even officially begun and I was already thinking about how my powerchair has become my best friend rather than a pair of running shoes even though my new powerchair has yet to arrive. I also thought about the pile of dirty clothes that needs to be washed and yet how I have zero energy to load the washing machine to even get the first load started. About how much pain my body is in every second of every day. About how extra hard everything in life seems to be now from putting on my socks, to brushing my teeth, to filling up the gas tank in my van, to buying toilet paper.

We all have moments when thoughts like that appear. Thoughts that we really don’t want to be thinking but show up anyway. I know I’m not the only one waking up wishing that MS didn’t exist and having a woe-is-me morning.

As I pondered my dreary, self-focused morning thoughts I realized fairly quickly that I needed to adjust my thinking. Today, this very day that I woke up to dreading, is someone else’s chance at living. How can I throw that away? How can I waste 24 hours – time that I can never get back – choosing to fill it with sadness and regrets.

This day called today… the day that I woke up to feeling exhausted and disappointed in because of MS. Yes, this very day is a blessing to someone else. All of those things I woke up dreading are seen as a blessing in someone else’s world.

There are people today thankful for the chance to fix things they messed up yesterday, thankful to spend one more day with their family and friends, thankful for the pain they have to endure because it simply means they are alive, thankful for an opportunity to see a doctor even if that means they have to travel hundreds of miles to get there, thankful to have a wheelchair even if it’s second-hand, worn out and falling apart.

I can choose to be one of those grateful, thankful people or decide to waste away my day on regrets and sorrows. And so can you.

How about I start things over?

Good morning, sunshine…today is a new day. It’s a chance to do something great. It’s an opportunity to truly live and make a difference. There is only one today and each second of it is precious.

Don’t waste the day pondering regrets and sorrows from your woulda, coulda, shoulda thoughts. Invest your time into the lives of those around you and into yourself as well. It’s worth it. You’re worth it.

It’s okay to not be okay

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When multiple sclerosis becomes part of a person’s life, it comes with one purpose…to steal and destroy. It ransacks the nerves in the Central Nervous System with a ravenous appetite for myelin (the coating around each nerve).

If you didn’t know already, nerves happen to be extremely important to the body. They are what gives us the ability to see, hear, talk, walk, feel, breathe and even blink…basically they control everything a body does.

It seems that no matter how much MS chews and gnaws at the nerves, it is never satisfied. Once it gets a taste of fresh myelin it can’t stop. It just wants more, and more, and more like cookie monster. Om nom nom.

It acts as if it’s at an all-you-can-eat mini bar gobbling up everything in sight while leaving behind a table piled high of dirty plates, silverware and cups. I even tried to trick it by covering everything with hot sauce made with ghost peppers, but it just mockingly licked its lips and kept on munching.

It’s sneaky too, working in the shadows with no remorse or regrets. I’m almost sure I saw it on the top chronic illness most wanted list.

But even though it causes such terrible destruction and chaos wherever it is found, there is one thing it can’t steal from you. It can’t take away the person that you are. Never forget that. You are so much more than MS ever could be. So much more!

I know you have days when MS defines your day and determines your capabilities, but don’t ever let it define who you are. You get to do the defining in that area. And from what I can tell across the miles, wires, online posts and cell phones, you are strong, courageous, brave, and amazing…even when you think quite the opposite to be true.

Hold your head up today, take a deep breath and step out into the world knowing that you are better than MS or any other kind of illness or problem you happen to be facing. Don’t ever underestimate the value of who you are and never, ever, EVER let MS steal your identity. Don’t forget that it’s okay to not be okay.

I face the impossible every day with MS

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I understand how it feels to be drowning in medical bills, strained relationships, physical and mental exhaustion, stressful obligations and a demanding job. Add to that the fact that you’re living every second of your day with multiple sclerosis and you might as well just close the door telling everyone your body’s out of service and you need a break.

You face the impossible every moment of every day and yet somehow as the sun goes down, you always make it. You find yourself climbing into bed feeling beat up, worn out, battered and bruised, but as you lay your head on your pillow and take a moment to look back over the day, you realize that the ninja living inside of you kicked some MS butt.

You pushed through rush hour traffic with your legs and hands cramping up while your head was spinning everything in sight. It felt more like you rode in on a roller coaster than a highway. Then you managed to make it to the bathroom…well, almost. But thankfully you had a change of clothes in your car and no one even noticed that earlier you were wearing a pair of black slacks instead of the blue ones you now have on.

As the day went on you kept making mistake after mistake. You’ve become pretty good at covering those kinds of things up. It takes great skill to stumble over words then turn them into something that makes sense. You’ve mastered the art of word replacement, finger pointing, hand gestures, and usage of the words thingamajig and doohickey.

You even managed to keep from burning down the house after forgetting about the casserole you put in the oven for dinner. Sure, it was a little charred, but you are now an expert as scraping off the burnt parts and still producing something that’s edible.

Today may be an awful day, but it’s not the day you give up even though you have every reason to do so. Instead, it’s the day you push through and remind yourself that if you can make it through the terrible, horrible day you had a few days ago…then you can surely get through today. Let your inner ninja loose.

Hiyah! (jumps in the air and kicks MS in the teeth)

Living with a urostomy and MS

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I’ve been having trouble functioning due to the kidney stones I am dealing with. The one I passed last month was over 19mm in size. That’s a monster. As you know I had my bladder surgically removed due to the bladder issues I was having with my suprapubic catheter (SPC). With multiple sclerosis most people do well using a SPC but I now have a stoma that helps me to empty my urine. It’s called a urostomy.

It gives me control of my makeshift bladder which is a urine pouch that I attach to my stoma at my stomach area. I empty it myself when it gets full just as you empty your bladder throughout the day when you go to the bathroom. And at night I can attach a larger night bag so I don’t disrupt my sleep needing to empty it.

Thankfully the pouch fits inside my jeans or whatever clothing I may be wearing so people don’t even know it’s there. My kidney’s are still functioning just routing my urine to an external pouch that I change about every 3-4 days.

I didn’t know my kidney’s could pass stones via my stoma like the monster I did pass. But at the moment my recent CT scam shows that I have a stone that is blocking urine from passing in my right kidney. Because of it my kidney is inflamed which isn’t good. I see my urologist on the 10th. I was hoping he could see me sooner.

But in the meantime I’m taking pain pills to help curb the pain. I’m exhausted just writing this. I also have a temperature that I recently got under control. It’s now 102° but manageable with antibiotics and Tylenol.

I’m thankful that I had my bladder removed, it has been a great help to me in dealing with wetting myself as I did before. The only problem I have now is when my pouch has a leak from where it attaches to me, which doesn’t happen often.

I don’t have to time my bladder to my life like I did daily before. I have an empty water bottle in my van if I need to unexpectedly empty my bladder which really helps. Just if you ride with me and see that it’s full, know that it’s not a Mountain Dew. (grin)

I also have a birthday coming up and hope anyone that can help me to cover the cost of my new powerchair will help. If everyone gave $20 that would help out tremendously. Thank you so much for your help.

I can’t get any air

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I almost choked on my own saliva Monday. It was a scary experience. I was sitting on the couch listening to some music and just swallowed. Nothing unusual. Just a simple swallow, but it turned out to be a truly terrible moment.

When I swallowed it seemed to go down the wrong way then I couldn’t get my throat muscles to cooperate. I was unable to catch my breath in the process. A few minutes went by as I struggled to breathe. I leaned forward, raise my arms hoping it would help, tried to massage my throat even turned my small fan on sitting beside my seat but my throat was spasming and nothing seemed to work in resolving the issue. I felt like I was chocking.

By the time I was able to catch my breath I had tears streaming down my face and I was weakly coughing in an attempt to clear my throat. My throat was still spasming. I felt hopeless. I was unable to speak for at least 30 minutes. All I could do was pray, cry and hope for a clear airway to stay.

Those are the times I truly dread and most people don’t even talk about them. I have yet to find a solution aside from making sure I’m sitting up, not reclining. Reclining seems to make it worse. I’m thankful those times don’t happen often but they do happen enough to warrant concern.

I want you to know that you aren’t alone in the struggle. Of course there are countless other struggles we face on a daily basis but all can be overcome with a little bit of patience and hard work. Don’t lose heart when they happen.

Today I’m breathing better and believing for a good day ahead. Believing the same for you too. It’s going to be a good day!

I wake up each morning ready for a nap

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I can remember a time in my life when I would stay awake for days just because I could. I pulled all-nighters at least twice a week for no real reason using the time to spend with friends, hang out at Steak ‘n Shake (the only restaurant in town open all night), and watch reruns of Doctor Who. Life was simple then.

I think sleep is paying me back now for all those hours we missed together. I find myself waking up in the morning ready to take a nap, and then when I do nap, I’m ready for another nap as soon as I get up from that one. It’s a weird and crazy cycle…sleeping to sleep.

As a kid I was always told we needed at least 8 hours of productive sleep. Lately, I’m lucky to get 8 hours productive awake time. I have been known to fall asleep in some of the oddest places too: at the dinner table as my head slowly drops into my plate of food (I haven’t done that in a while though), at the bookstore as I’m chillin’ in my chair skimming through a book, and even on the toilet just doing…well, you know.

My eyes will get heavy and I find myself thinking, “I just need to shut my eyes for a second.” But as soon as they shut I am instantly transported to another world. It’s a wonderful world, a place where multiple sclerosis doesn’t exist and anything can happen. I have been known to fly and have even tiptoed throughout the tulips and danced with leprechauns. One day I actually discovered I could dance better than Michael Jackson. Crazy, huh? Especially since I can’t even walk.

The only strange thing is that I can’t stay in that place for long. That’s why my life has become a continual daily life of nap, nap, nap with no sleep, sleep, sleep. I’ve been visiting there quite a bit lately; this land of nap. Maybe you have too.

And don’t feel bad if you are experiencing the opposite and can’t fall asleep no matter how hard you try. That can be just as miserable, but in a different way. Wow, a life with MS is as unpredictable as the weather. Sleep, no sleep…Ugh!

Just remember to be good to yourself through it all. Yes, you are that important.

I think my bed is calling to me. I can actually hear it humming my favorite song…Zzzzzzz. Me and sleep, sleep and me, we have become the best of friends.

I didn’t choose a life flipped upside down

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Once diagnosed with multiple sclerosis I wanted to do something to help others like me who live day in and day out with an unpredictable life of chaos. I didn’t actually know if the things I had to share would make a difference or even matter, but I knew I needed to try. If not for others, at least for my own sanity and peace of mind.

So, I started writing away even though I was unsure who would actually read what I had to say. I know that sometimes I get serious and real about what things are like for me and others living with MS. Other times I can be a bit goofy. But my hope has always been to help others feel less alone and less scared about living with MS.

I have been amazed at the growth of Positive Living with MS over the years, not just among other MSers but also with caregivers and people dealing with other chronic illnesses. We all have something in common… an unexpected disruption to our lives that has brought about a whirlwind of change, confusion and pain.

I didn’t choose to have my life flipped upside down. I didn’t choose a life of constant struggle because of MS, but it didn’t give me a choice. I didn’t cause it, I can’t control it and I can’t cure it.

Somehow it found me and here I am living in a world that is constantly changing. I don’t want to feel like a failure because of something beyond my control. I refuse to believe it will be because I didn’t fight hard enough.

Like so many others around the world, we research, we dig for answers, we hope, we cry, we even get discouraged. But you know what? No matter how low our emotions get or how bad life becomes, somehow we find the strength to keep going. Somehow we get through one more day. Somehow hope fills our hearts when the weariness grows deep. Somehow. Somehow.

I don’t know how MS really works or why some people have more challenges and difficulties in life than others, but I do know that no matter what you are facing or how hard things get, you are not alone. I am here along with thousands of others around the world to bring encouragement, hope and peace to a broken and chaotic life.

Together we love, help, dream, and live for a better tomorrow. Together we stand arm in arm holding each other up as we swing our swords in battle. What a sightly bunch of warriors we are. Bruised, wobbly, weary, tired… but somehow less afraid of tomorrow.

If you feel sad today, know that you aren’t alone. If you feel you are losing hope, hang on a few more days because the sun will come out and the birds will begin to sing once again.

You are amazingly strong, resilient and a fighter even on your weakest days…especially on your weakest days. Keep standing. Keep hoping for a better day. Keep sharing. Keep fighting.

Are you a real person reading this or just a bot?

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AI is taking over the internet. It’s sad because websites are now built for bots, not humans. Everything I write is inundated with bots that consume the content for who knows what reason. The content is then stripped and regurgitated into other none human writings.

Interaction with people should take place either one on one or with people you know are real because 9 times out of 10 on the internet you are interacting with a bot. A machine that is sent to strip, skim and spit you back out info that has no feeling or charm. The heartfelt post is just pushed aside so the bot can force users elsewhere for their own AI gain.

They consume everything available. The internet is no longer a place for humans. It’s a buffet for bots. The goal is nothing less than total control over not only access to information but also over the selection, creation, and invention of information. While AI scrapes the content, indexes it, and leaves you with crumbs.

This is sad! I think I will leave all social media and restart by living a life with physical, local friends! I’m happier that way. I love feeling needed and being able to actually help real people from the heart. There’s no heart in AI. Just so you know, all the real people online I will still post my funny nonsense posts to give you a smile. That will always be there… bots or not.

My recent journey with multiple sclerosis

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Last week I had the scary experience of my legs choosing to quit holding me up. I don’t know if they were tired or just wanted to take a break, but in the middle of a standing transfer from my power recliner to my power chair, my legs decided to give way which meant my body met the floor rather quickly. I wasn’t planning on a visit with the floor any time soon, but there we were, face-to-face.

It took me quite a while to be able to gather enough strength to get back up. Thankfully I was able to MacGyver my way to a living room chair. The hardest thing for me is that I have lost most trunk control so I topple over without both of my arms holding me up when trying to prop my body up in a sitting position. If one arm moves away to do something else I will topple over. Like a 3 legged chair on tilt.

My family came over to help get me to bed mid-afternoon. I just wanted to go to bed because I was hurting. My fall bruised my entire right foot. It’s still purple today but the swelling has gone down. Not yet sure if anything is broken until I meet with the Orthopedic doctor. I have no feeling in my toes which doesn’t mean much because numbness in my legs and feet had been creeping deeper for months anyways. So it was a terrible day from the very start.

Many times when our bodies quit working as they should, we become discouraged. Those helpless times open the door for our thoughts to run wild with fears, and sometimes we find ourselves growing tired in the struggle.

This journey that we’re on — this journey called life — I know it’s not perfect. It has many hurdles and obstacles that keep jumping in the way. We can allow those difficulties to make us angry because our path has become hard and seemingly impassable, or we can choose to be thankful for the lessons we learn along the way.

I know it sounds crazy to be thankful while facing a monster like multiple sclerosis every day, but it’s possible, and you can be too.

What lessons? For me…

MS has taught me to hold it together when I would much rather fall apart.
MS has taught me to keep going when it would be so much easier to just throw my hands up and quit.
MS has taught me to rise up in strength when every part of me is weak and weary.
MS has taught me to always be grateful in the good times and to find the good in the bad.
MS has taught me to allow the tears because they provide water in the desert.
MS has taught me to sing even when I have no song left to sing.
MS has taught me to laugh in the face of sorrow.
MS has taught me to join hands with others just like me so no one has to face this beast alone.

What great life lessons. Lessons I have never regretted. You see, I have discovered that I am weak. My emotions, my thoughts, and especially my body…all weak. Friends may not understand the battles that I fight or realize the fragility of my life, but even when I’m alone in the journey I will hold my head high.

MS has made me strong in ways I never thought possible. I stand strong even while lying flat on the floor.

My strength is not something that can be taken away, it is something that grows with each passing day. Instead of allowing the struggle to defeat me, it is only making me stronger. I am strong because of my journey with multiple sclerosis, and that, I would never trade.

Stand strong in your weakness. Hold your head high and proudly wear those battle scars…those bruises and scrapes you have collected over time. With your sword in hand, charge forward in the fight. You are not defeated. You are just getting started.