Never regret… today’s a chance at living

/3 Comments/in /by

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

/2 Comments/in /by

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

/2 Comments/in /by

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

/7 Comments/in , /by

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.

____________________

Fundraiser for Penelope’s New Powerchair

Give at GoFundMe
Give at Positive Living w/MS