Multiple sclerosis doesn’t take a break for the holidays

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Multiple sclerosis doesn’t take a break for the holidays. Oh, how I wish it did. I’ve already filled my refrigerator with tasty foods easy to prepare and have coffee ready to brew. My laundry is done for at least a week and the dishes are all cleaned I just need to put everything away in the cabinets. My Roomba is all set to clean the floors for me so everything seems to be going good… for now.

But I live in a world where the MS Monster is real no matter what’s taking place around me. My parents always told me there isn’t a scary monster hiding under my bed or in the closet, but I now live with one that follows me around every day and even growls at me from time to time. He’s an impatient bugger.

I think its main purpose is to instill fear in me… fear of the unknown, fear of increased disability, fear of being alone, fear of not having needed support. Such great amounts of fear that has the potential of growing and discouraging me from enjoying anything in life. The holidays aren’t as much fun as in the past. I do my best to find some joy even in the worst of times but it’s getting harder to find.

My family will be coming over which could be stressful, but I no longer get stressed trying to do too much. I actually don’t do much at all. I just work to keep the most needed things handy and have plenty of chocolate on hand for an emergency. Like Duct-tape, chocolate can fix anything.

I’m always ready for a battle. With MS I’m basically in a fight every moment of the day. I need to be strong and ready to fight.

I can’t stop myself from thinking about my former life. Was it real? I’m not sure. It’s so far away from my current reality. Sadly, my mind holds onto pieces of things that have long been erased. It has a tendency to bring on depression which can further weaken my health trying to convince me to give up.

I spent years convincing myself that monsters were only in my mind… that they weren’t real, but in this body I’m living with the MS Monster. I haven’t been able to shake him. I’ve worked hard to power through the fear. It’s not easy and comes with lots of lonely times. Most people don’t understand how painful and lonely it can get.

The best way to fight is to take it one day at a time. You are always taking care of everyone around you, but you need to focus on yourself right now. Stay positive and know that we are all cheering you on.

Never stop believing in your extraordinary inner strength. It has brought you this far and will guide you along the way. No matter what life has thrown at you in the past, you have survived it. You are so much stronger than you think. Keep on fighting and don’t give up.

I wish I could take this monster away from you. Remember that you are not alone in this fight. You are amazing.

Multiple sclerosis doesn’t make life easy to manage

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Multiple sclerosis has been a constant struggle for me from the start of my diagnosis. It’s been progressing faster than I ever thought it would, even faster than the neurologist had predicted it would. It’s the uncertainty of what may take place tomorrow as my body continues to wear out that is the hardest for me to deal with.

I know I will never get any better than I am today. As my body declines I just have to do my best to not focus on how hopeless and lonely it feels to not have any answers as to how bad it will get. I chose to stop any DMTs that I had been using in the past mainly because the symptoms of the drugs made me feel worse than MS itself. And no one truly has enough proof that it will stop the progression… only that if MAY slow it down. But even that is debatable from person to person.

I just decided that living my life as it is now is more important than sitting in the waiting room at the neurologists office and racking up bills that I really can’t afford. It definitely doesn’t make life easy to manage.

One of the hardest things I face is when those closest to me question my decisions about how I’m dealing daily with MS. Some have an attitude that I’m causing it all myself by not taking any meds and others even doubt how bad it truly is. What am I supposed to do with that? I’m in a forever progression than is rolling downhill without a stop sign or guardrails.

When my heart gets heavy I tend to turn on some soothing music, curl up in the bed and let the tears flow. I allow myself room to collapse for a period of time to calm my soul. It doesn’t necessarily make the pain or depression go away. You can’t order your mind not to think or feel a certain way. We tend to make things worse for ourselves by adding a negative self-judgment to what’s already a difficult situation. That’s our inner critic interfering with our peace of mind.

I think everyone needs to make room for the uncertainties in life. Don’t feel bad for feeling. If sadness is there, it’s there. If worry is there, it’s there. Yes, becoming aware of a painful emotion can be helpful… it can loosen its grip on you. But it doesn’t automatically make it subside.

Accept without judgment that you’re feeling sad, angry, worried, etc. but add to it self-compassion for the mental suffering that accompanies the chaos. In other words, be kind to yourself. Comfort yourself when you’re feeling bad instead of blaming yourself for feeling that way.

The more you open up to your feelings, the more you can do what matters most to you, and the more you can enjoy the full richness that life has to offer, together with “bad” and “good” emotions… come as they may.

When did society stop caring for the sick?

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There’s so much evil happening around the world that it makes trying to live a seemingly normal life an impossibility especially with multiple sclerosis added to everything going on. One thing that makes my world better is to not dwell on other people’s opinions about my own life. People who don’t actually matter to me. You know, like the stranger in line at the gas station, those eating at a restaurant that I’ve never met, the unknown person online with unfounded and outrageous opinions, even doctors and nurses that know my name but not really anything else.

If I wouldn’t invite someone into my house, I shouldn’t let them into my head. It’s sad really. As my health declines, my circle of friends have decreased with it. It seems that happens to everyone I talk to when it comes to living with a chronic illness. It’s easy to commit to helping someone for a month or two, but anything longer than that you become a burden to them and they find other things to take up their time.

When did society stop caring for the sick? It’s easy for someone to post a status online saying how much they care about others or share a picture of a bouquet of roses to say they care, but to actually get their hands dirty and physically do something is waining. You just don’t see that happening much anymore.

People seem to want to be recognized for something big by the world. They want the  press coverage and achievements hanging on their wall to show off their accomplishments to prove that they care for others. I’m just sitting here at home needing my trash taken out and can offer a hug in return. Not much. But a hug will last longer than any 15 minutes of fame. After all, a hug is eternal.

You seem to see all the crazed SJWs causing chaos instead. How is that supposed to be helpful for anyone? Turning on the news is more depressing than living in my mobility hindered world. Don’t just assume because I’m silent and not asking for help, that I’m okay. Most of the time I get tired of always asking for help and getting excuses in return. That’s why I simply quit asking. Sure, you can fault me for that. I should be more persistent in voicing my needs. But the flip side to that is when I am persistent, I get a defensive response that basically becomes an “I’m sorry I can’t help you today, I’m busy” reply.

My advice. Hang onto those that have proven their word time and time again. Shower them with thanks and gratitude as often as you can so they know that their work and help is needed, valued and appreciated. Get creative and come up with a back-up plan for all the other people that disappoint you. Sometimes I just want to be numb to it all but then I realize my thoughts, feelings and my MS story matters so I can’t hide away.

I have to focus on what I can control… giving of myself, my time, my efforts, my stories, and humor. The more I focus on my purpose, the less I give weight to what others think or say about me.

You might think you aren’t hurting enough. That there are people worse off than you and have been through more struggles. You may even think your story isn’t significant enough when you compare it to others and then the thought comes to your mind that people will think you are just seeking attention.

There is no measurement for pain, hurt and loneliness. No matter where you are in your life story or what it looks like, it means something. Your pain is important because it’s yours. Your story can help other people continue their stories. Yes, all pain is different. But there are things that we all share when the darkness comes and we feel hopeless.

You are a being. You exist. You breathe. You love. You fight. You hurt. You feel. And because of everything, because you exist, you matter.

Never let other people’s actions keep you from knowing how incredible you really are. You truly are an amazing person and not a burden. You may be living with an incurable, unrelenting, horrible disease, but you are AWESOME! Don’t you forget it!

My muscles are freezing up with the weather

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When I woke up this morning and I truly felt awful. The worst I have felt in a long time. I sat on the side of the bed for about 15 minutes trying to determine if I could even make it to my powerchair. I finally transferred but then had difficulties in the bathroom just trying to brush my teeth. I was struggling to put toothpaste on my toothbrush. I didn’t have enough strength to squeeze a tube of toothpaste with my right hand while holing my bush in the left. I decided to sit in the shower on the shower chair and brush my teeth in there because I have a toothpaste dispenser that can do all the work for me. No shower… just a good tooth brushing.

Just that little bit of work was exhausting to me. And besides it has been below freezing here lately so I can’t move to do anything in the cold. My muscles are all stiff and not helping me out. With me trying to conserve money I don’t run the heat as often as I normal would run it to keep me warm. I’m actually sitting in my lift recliner right now under a heated blanket just to stay warmed up. Electric blankets are amazing.

My hands have been giving me a lot of trouble lately. The stiffness in them just makes everything a quadrillion times harder. I’ve been having a difficult time holding onto anything. My utensils, my coffee cup and even a sandwich. I was able to put together a PB&J but with difficulty. I spilled a jar of jam in the process. As soon as I was able to get some jam on a spoon it would fall off. When I tilted the jar I couldn’t keep the jar steady and it came off the counter crashing the floor. It made a mess that I didn’t want to clean up but knew it would become a sticky mess if I didn’t. By time it was cleaned up I was too tired to eat it. Ugh, such is my life with multiple sclerosis.

Even though my muscles are giving me troubles, my bowels are too. I normally try to use a product like miralax daily to help me out but haven’t had any around so I’m actually going to try a tablespoon of caster oil to help me out since I have some in the cabinet. I have been told that it will loosen things up quick… and by the way my belly feels right now, I know it will make everything better once things come out.

Those are the things people don’t like talking about, but they are real and affect more people then you realize. Oh, and my mom came by the other day and brought me a couple of jars of daily vitamins… the gummy kind. I wasn’t expecting it but it made my day so much brighter. She said she just saw them in Aldi and thought, “Hey I need some of these. Let me buy some for Penelope too.” She’s so great like that. What a blessing. I don’t know if people understand that something so small as a bottle of vitamins can really make a big difference. Anything people can do for others to put a smile on others faces matters.

What if we let people know that they are loved. Not by spending lots of money but by sending a card, writing a poem, sharing a meaningful song, or doing something unexpected. There’s so much we can do even with MS causing us trouble.

I’m sending you my own encouraging note this morning. Take this crazy MS life a day at a time. More than anything, I want you to know that you are always loved. It’s the only thing that really matters. There is so much ahead for you. I know life can be hard, but you are going to make it. Keep hoping for a better tomorrow because tomorrow things could be better. Never stop hoping, never stop trying, never stop believing, and never EVER give up.

Do you suffer from comparison-itis

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Comparison is one of the greatest diseases in this world and we are taught to do it from birth. From birth our parents start comparing us with other children. Simultaneously, our teachers and coaches compare us with other children.

This is the greatest disease because everybody is born unique, and comparison is simply not possible. Just as we are all unique and cannot be compared, it is the same with illnesses. There is NO illness worse than another. ALL illness is terrible.

When a person compares someone who has multiple sclerosis with someone that has another illness… they are speaking from a lack of understanding and through filtered lenses. No one can know what someone is experiencing unless they crawled into that person’s body to feel what they feel, and experience what they experience.

One of the worst experiences is when you share your multiple sclerosis journey with someone and they proceed to tell you how their approach to MS or some other ailment is the only way you should be living? That you need to adjust your diet and get rid of meat, diet soda, and gluten. That because you go to a doctor and take meds, you are doing it all wrong? That you wouldn’t have the struggle you are having if you would just do things their way? That if you only ________ (fill in the blank) you would feel better?

It can get extremely frustrating when someone assumes they know your body and your journey better than you do. Comparing illnesses or even progressions of the same illness between two different people never works. When someone does the comparing like that, they have fallen victim to the greatest disease in the world… comparison-itis! But take heart, there is a cure… an adjustment of the attitude works 100% of the time.

Stop comparing, stop complaining… and start loving, caring, and nurturing one another.

My Multiple Sclerosis Seussical World

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I don’t know what Dr. Seuss book I fell out of, but this weird little word world still has me tongue-tied and inspired by his insane imagination. I really need to create my own multiple sclerosis dictionary with all my silly lingo words that get created when I flub up my speech… which happens often.

Wheely Thingy – rollator walker
Snippycut – scissors
Urmp – perplexed
Waddlewampuz – walkking crooked
Fatone – big toe
Phogo – mobile phone

“I like nonsense,” Dr. Seuss once said. “It wakes up the brain cells. Fantasy is a necessary ingredient in living. It’s a way of looking at life through the wrong end of a telescope. Which is what I do, and that enables you to laugh at life’s realities.”

That’s how I want to live my life. Ready to zip-a-dee-zoot and head out the door for my day filled with the impossible, wacky, and unknown happenings in my MS world. Here are few of his nuttiest little nuggets that’ll help you feel extra Seussical while you supp on green eggs and ham as you go about your MS  filled day.

Ga-Fluppted:
In Hunches in Bunches, the line reads, “That mind of yours… is frightfully ga-fluppted. Your mind is murky-mooshy!” Reading it in context like that, it seems like that term is meant to be some kind of funky MS train of thought mixup. Seems about right.

Zizzer-Zazzer-Zuzz:
In ABC: An Amazing Alphabet Book! you are introduced to a three-Z creature “Zizzer-zazzer-zuzz”. It’s believed he has escaped from the zoo. He plays jazz on the zither and loves to eat Zizzer-Zoof seeds. I think “zizzer-zazzer-zuzz” can definitely sub in as the new “thingamajig.”

What wacky seussical words and phrases might apply to your MS life?

I can’t help but remember Dr. Seuss saying, “You have brains in your head. You have feet in your shoes. You can steer yourself any direction you choose.” I believe that whole heartedly. The problem is that most of us underestimate ourselves.

You are capable of more than what you think you are. All you need to do is believe in yourself and hang on as you navigate this weird and wacky MS seussical world. Yipity-zoo-za-zay.

We are in a war against our bodies – this is multiple sclerosis

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There is something about having things left undone that sets me on edge. I don’t know why, I guess that’s just how I’m wired. Because the temperature outside is dropping I needed to make sure the air in my van tires were properly set. The cold weather always decreases the pressure so air needs to be added. Like most people, I have a portable air pump so I don’t have to go to a gas station or a car mechanic to pump them up. The temperature dropped to below freezing last night so I had to make sure everything was going to be okay in the coming days.

I was glad I checked them out. I spent about 20 minutes adding air to each tire. I checked my riding mower tires too while I was at it, so all my tires are good to go now. I won’t know it my van tires are properly filled until I go down the road. The sensors in the van will let me know if the air is still too low. Hopefully I filled them up without needing a bit more air.

There are a few more jobs I need to do around the house in the coming days. My to-do list has become filled with an unending list of must-do items. I try my best to tackle my list, but lately it has gotten bigger than I can manage. I’m going to have to get some help if I don’t want the coming winter to overtake me.

Dealing with all the things I need to do around the house doesn’t put MS on hold. When multiple sclerosis stepped into my life years ago and it made a jumbled up mess of my bodies makeup. My internal wiring has been a crazy tangled up mess since then. So the mess outside of my body makes an added mess to my insides as well. Either I’m battling a myline munching monster or it’s life itself complicating everything around me.

It feels as if I’m living in a virtual Trouble board game merged with Operation… My Pop-O-Matic die roller is broken and I have been sent back to start more times than warranted. My Operation doctor is still working to determine which nerves have been cut. Is it the train of thought nerve? The vision nerve? The speech nerve? The funny bone nerve? No one knows.

MS short circuits my bodies ability to properly function and creates chaos where there isn’t any chaos to begin with. Nothing ever seems to go as I want it to. My body seems to have a mind of its own and has adventures without me. I tell it to walk and it rolls around on the floor. I tell it to run and it sits down laughing at me. I tell it to sleep and it throws a temper tantrum. It just doesn’t seem to listen to anything I say. It’s worse than a rebellious teenager.

We are in a war, you and I. A war, not just against a broken pop-o-matic die roller or a faulty operation doctor. We are in a war against our bodies… if there is such a thing. There are so many things I used to be able to do that seem huge today and nearly impossible. Everything from laundry to running the dishwasher, from sorting mail to grocery shopping, from driving through traffic to maneuvering through crowds, they all seem extra hard, nearly impossible, and bigger than life.

You know what I have learned in this messy life we have? I have learned that it’s okay to have an unfinished to-do list. It’s okay to let the dishes sit alone in the dishwasher. It’s okay to not clean out the car, to slow down when I’m in a hurry, to enjoy a moment of quiet with just myself. Each minute is a gift we are given. We get to choose how we use them.

Take more care in how you use your minutes. They are precious and shouldn’t be wasted with worries and frustrations. If that means things don’t get done… oh well.

Use your minutes with care. Do something you love, something just for you, something that will give you a chance to simply enjoy the day. You are amazing and deserve some time just for you.

Don’t let multiple sclerosis hold you back

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I started a new home improvement project. My garage door needs new weatherstripping across the top and sides of the door. I researched the products I need and decided the cost is actually fairly low if I do it myself so I bought all the wood and screws needed.

Yesterday I started the first step in replacing the old weatherstripping. I bought four 1×3 boards that needed to be cut down to 1×2’s. I discovered in order to have a board exactly 1×2 I would have to cut them down myself. I laid the boards out in my backyard so I could use my circular saw to cut them down. I don’t have a fancy setup to hold the boards steady while I cut.

The bad thing is that my legs have problems maintaining my balance even while sitting. I set up a folding chair for me to sit in while I cut the boards, but I had trouble keeping the cut straight while I was working to balance myself. While I used the saw my legs kept slipping and I came close multiple times to falling over. My leg muscles are just very, very weak.

It was such a struggle. I was able to cut the 8 foot long boards about 12 inches at a time. I had to keep shifting the board down to keep on cutting the full length of the board. It took me so much longer than planned. After a pile of sawdust formed I had finished cutting them down. I felt so proud of myself. Next week I’m going to paint them white and a friend is going to come over to help me hang them around the garage door.

So far I feel so accomplished. I know there’s still a lot to do, but for me cutting the boards was the hardest part. I still have to pull the old boards off and sand the old wood before I can attached the new wood in the opening.

I think I make things hard for myself but I feel so good knowing that I am able to accomplish something myself. That’s the stubborn part of me. I have saved over $300 that I don’t have because I’m doing it myself. Multiple sclerosis has made it difficult, but not impossible. It’s almost like I have a challenge set before me and I have to prove to myself that I’m still capable. If I can’t do it, I will throw my hands up and surrender but I want to at least try before I give up.

Giving up like that does happen but so far I have been able to push through many challenges that MS has brought along. Falling over is not something I want to happen. It seems like such a small thing but it’s actually quite big. The time it takes for me to complete the project will take longer than it would have if I was stronger, but even the time delay is not going to hold me back.

Some of the most difficult things for me is doing anything that requires a steady hand. I can guarantee you that in your trying you are going to feel like a failure at some point…maybe even more than once or twice. But choose to be like Thomas Edison at those times. During his work on the lightbulb, he said “I have not failed 10,000 times. I have not failed once. I have succeeded in proving that those 10,000 ways will not work. When I have eliminated the ways that will not work, I will find the way that will work.”

You will find a way that works too! Whether you find a better way to improve your life or a new way to do something that others tell you (or even you tell yourself) can’t be done, keep trying. Don’t give up on living. Don’t give up trying. Don’t give up no matter how impossible or difficult things may get. Just don’t give up. You will find a way that works for you.

MS bladder issues, when it rains it pours

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I don’t like days filled with constant surprises and uncertainties but living with multiple sclerosis is going to have its share of unpredictability. One day things could be going great, the next it could turn out to be an awful day. And sometimes it doesn’t even happen by days but by moments. Like Forrest Gump says, you never know what you are going to get… with a life of MS.

There are different things people can do for their bladder issues. It’s important to determine the type of urinary issue you have. Some deal with physical therapy learning ways to strengthen the muscles the bladder uses, there are medications to support incontinence, there are support devices that help train the bladder to properly function, but if those treatments aren’t working there are several surgical procedures that can treat the problem.

Ten years ago I had surgery to place a suprapubic catheter in my bladder to help aid in the emptying of my bladder. I no longer had muscle control of my bladder so I was unable to properly manage its usage. It took time to get used to but I was thankful for having it done. My bladder was finally able to be drained to an external bag rather than me peeing all over myself and life was great once again. It was a learning curve but it made life easier for me.

Over time my bladder had created stones causing drainage troubles. I had surgery to remove them but was still having bladder issues. The nurse was having difficulties each month removing the Foley catheter to replace with a new one. My body just seemed to think the catheter was a part of my bladder and would try to seal the opening making the removal each month painful due to it trying to attach itself to my body.

My urologist had suggested I have my bladder removed to alleviate the problems. After taking time to think about it and reading about having it done, I approved the surgery February of this year. It’s been 6 months and I’m so glad I had it done.

I had to learn how to attach my newly needed bladder pouching system which wasn’t too difficult to deal with. A stoma was created to properly drain the urine my body creates I just no longer have an internal bladder for it to empty into. My bladder is now an external pouch / bag. I just have to make sure I wait until early morning to change it out because that’s when I have better usage of my hands.

It can get comical when I try to change my pouching system after having a lot of liquids in my system. My stoma which controls my urine will shoot urine out in a quick stream and without the pouch in place it’s equivalent to me peeing on myself. I usual change it out in the shower so I can have a clean belly to work with. But like most people learn with their pouching system, it’s suggested to replace it while standing up so you can properly place it. But for me, that’s not possible.

My routine is to take a shower to clean myself up, dry myself off, place a dry washcloth over my stoma so if I pee out the cloth will catch it, put my robe on and transfer to my powerchair, make my way to the bed, get comfortable lying down on the bed, prepare my pouch to place on the stoma. Normally by that time I’m thankful I placed the washcloth over my stoma because I will have peed a little in the process of getting ready for the new pouch.

When I get the new pouch on, I’m ready for a nap but also thankful that I got it all done by myself… no nurse needed. Then I get dressed and normally make my way to the living room and rest on my new powerlift recliner. I normally have to change the pouch once every 4 days. Sometimes I can even go as long as 5 days before changing it out. But of course there are also time I have to change it much earlier due to not placing it properly and the pouch pulling loose from my belly much too early.

I know it sounds complicated, but what part of MS isn’t. I’m thankful I don’t have UTI’s anymore or pain like before with a Foley catheter so the pouch change is nothing compared to my issues before. I’m thankful for bladder surgery to remove my bladder. It’s not something for everyone, but it’s doable. As long as I can keep doing things one handed, I will be able manage it for a long time by myself. I’m too stubborn and independent to do it any other way.

Don’t give up hope on ways to manage your bladder issues. There’s always a solution. Maybe not the one you want, but one that will make life easier for your already complicated life. Bladder issues aren’t the end of your life and neither is MS. Talk with your urologist about things that may help you out. You got this.

Memories worth sharing

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Do you remember the last tear you shared with someone? It could be due to multiple sclerosis troubles, relationship difficulties, family issues or just a life is kicking your butt type of experience. No matter what it was, it’s not easy to forget. The hurts linger for hours and even days.

But do you remember the last laugh you shared? Those are memories you never want to forget. It could be something silly, nonsensical or even something that no one understood but it gave you a big laugh and maybe even a snort or two. LOL

I find myself laughing at some of the silliest and dumbest things and some people just don’t understand why I’m laughing about it. I can’t quite explain why I’m laughing other than it was funny.

Just yesterday I cracked up while watching someone walking down the street. Why? I’m not actually sure why other than in my mind they seemed to be trying to dance but kept missing the beat and every step was so off with everything happening around them. It looked more like a clown trying to put on a performance in a washing machine.

As you know, I used to be a street clown and would go out to bring smiles to people and encourage them to laugh and find the humor in life. There’s nothing better than hearing someone laugh. It always makes me laugh too. I wanted to bring joy to others.

There are too many frowns going around today. I actually think if I were to go out today dressed as a clown and start my mime routine, some people would be offended by my humor because as a society we have lost the ability to laugh due to political correctness taking over. Someone’s feelings are going to get hurt.. then they are going to sue you or dox you or do some other freakishly evil backlash thing to you.

Political correctness has killed comedy.

A friend of mine mailed a picture to me of me dressed as Doodles the Clown (my own clown name) and it brought back so many wonderful memories of years gone by. I like when that happens.

I can picture tough guys laughing because they couldn’t catch the invisible ball I was throwing at them and see kids smiling because I created a cute little poodle with balloons that they were able to wear on their head. Sometimes another person was the butt of the joke, but most of the time I was.

People always like to laugh at the mistakes of others. So as a clown I was a big mistake happening. I would trip and fall with a bucket of water but I was the one who got soaked with it, not the person I was aiming the bucket at. Or I would get paint all other my shirt when my pen exploded all over me while trying to share my autograph.

I’m sure you could interject your own stories of crazy moments that gave you a bucket of laughs, times when you’ve done something out of the norm that brought a smile to the people around you. Those harmless office pranks, goofy magic tricks and silly jokes you tell, they are creating a lasting memory that will bring others laughter and smiles for a long, long time. It will take your mind off of MS for awhile and all that’s going on in the world.

Create a memory today. Do something crazy. As someone once said, “Don’t take life too seriously. You will never get out of it alive.”

If you need a laugh today, I dare you to watch this without laughing. It cracks me up every time I see it.