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.

 

 

I need to declutter my brain

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Rise up and work to overcome every obstacle multiple sclerosis throws at you. It is relentless and always trying to trip you up. It’s pretty good at it and has had years to perfect its chaos.

But when it comes down to it, you can accomplish anything you set your mind to. That never ending laundry will get smaller. Those dirty dishes in the kitchen will get cleaned up. That toilet that needs to be scrubbed… gets cleaned. So many chores, so much work, but all doable.

None of it will happen over night, but little by little it gets done. I would love it if magic fairies came down to help out, but they never do. I’ve been staring at a pile of laundry for 2 days and it hasn’t moved. But today I decided to get the work started. It hasn’t moved a lot, but the pile has gotten smaller.

Will it get done today? Maybe.
Am I concerned about the timing? No.

It will get done when it gets done… that’s all that matters. Even if it’s just one sock at a time, that’s progress. I won’t feel guilty for everything that needs to happen because there’s always something to do.

The more clutter that bounces around my house, the harder it is to decide what needs attention. As a result, I spend more time thinking about the tasks than actually doing them. It leads to stress and overwhelming schedules that appear unable to be accomplished.

I made a to-do list that can be easily shifted around but allows me to priorities and schedule things in a way that makes things manageable.

You don’t have to use some fancy app or journal to help you out. Any system you want to use is a tool that helps you to organize, prioritize, and review the things you have to get done.

Whatever you choose to help you organize your day, make sure it works for you and that it’s easy. It’s important to get things out of your head and onto paper so your can declutter your brain. We don’t need any more clutter messing up our day.

__________

What is causing you to put things down “for now”? Are you feeling too rushed in your everyday life? Is there never a chance to reset?

As you go through the process of clearing out your clutter, you will see that things become easier to put away when there is a home for them and that home is easier to access.

When you are tempted to put something down, ask yourself, Will I really have more time to deal with this later? Will I know where to find this later when I’m looking for it?”

Be kind to your future self and put it away now. Next week you will thank me. ― Kathi Lipp

 

When opinions become fact

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Knowledge can be powerful, but you can’t misinterpret a tiny glimpse of information about multiple sclerosis and then declare to the world that you know all about it… both the cause and a cure. Many people are even pushing their own products as support for their theories. It’s all a scam for get rich quackery. After all who else can make money today but the fakers and the takers.

Big pharma has been a great example. Push a product with no actual facts as a cure and people will buy it by the droves. No proof needed. Just spout off a few unapproved statistics and you’re gold… rolling in it that is.

To those online experts that talk about MS as if it’s cured I say…I wish you could live in my body for a day. You would quickly give up your degree in neurology. Oh, wait, you didn’t go to medical school. You got all your schooling from Uncle Fakealot and Dr Google. In that case, you need to fire Uncle Fakealot and even more importantly give up your university degree. 9 times out of 10 Dr. Google is WRONG.

But really, the internet isn’t what’s wrong. It’s people. We live in this weird period of time where people try to solve all of the world’s problems with bite-sized theories, unproven statistics and wacky medical solutions. Gone are the days of real knowledge. Opinions have become truth and everyone is an expert.

No one is wrong in how they go about living with MS. There are always things we could do better and new things to learn, but NEVER should we act as if we are the guru of all knowledge and wisdom regarding something as unknowable as MS and the human body, because we aren’t. Even doctors aren’t, they are all just practicing. That’s why their business is called a practice.

Don’t let anyone make you feel bad because they chose a different path than you. You be you and do what you know you need to do for yourself. You know your body better because you are the one actually living in it. Be unique, be crazy, make a mess, try new things, make mistakes, and even succeed…but most of all, hang onto the smiles around you and enjoy living.

There’s only one you and only one today, but there is a potential for lots of smiles to help you through this mess called life. Choose to find the smiles.