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A fearless warrior

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It makes me sad to think about all of the turmoil and chaos that is surrounding us in the world today. No matter where you are, you can’t seem to get away from it. It’s in front of you when you turn on the news, when you get online to try and find something worth reading, and even when you turn on the radio for a pick-me-up song. Such despair and uncertainty abounds.

I don’t have any answers for what is taking place in the world other than don’t react in fear. Fear is the worst thing you can ever hold on to. I’m not talking about fear of public speaking, escalators, or even spiders. Those are some my legitimate fears but not something that keeps me awake at night.

No, it’s deeper fears like war, famine, and even early death than will disturb any persons inner peace. I have found that I need to become fearless. Why? Because fearless people are not afraid to be afraid. They are able to take their fears as a warning sign and use them to get a better perspective of what is actually taking place around them… both the irrationally perceived problems and the real ones.

Every person experiences fear differently. You are not alone in this. Fear actually affects more people than the common cold. That’s because it’s a human experience. If I let fear rule me I would be cowering in the corner counting down time to my last breath. One thing you have to be mindful of is don’t let fear prevent you from actually living. That shouldn’t happen.

Fear reminds me that there is beauty all around in the shadows. It’s just hiding hoping to not be discovered. The beauty in the shadows is worth fighting for. No matter how bad thing can get, I will rise above the situation and be triumphant. I’m reminded that I’m a warrior regardless of what anyone else thinks. That I’m not going down with the ship. That I’m strong, mighty and capable of anything I put my mind to. And so are you. You’ve got this. Don’t lock yourself away in fear. Come out into the open, turn your face to the sun… and live. There is hope for a better day.

When it feels like everything is over, when the last bit of hope and light starts slipping away faster than you can chase it, it’s at that time you find you are able to gather enough strength to carry on. It’s that little voice you’ve been hearing in the back of your heart and mind to not quit and never give in. Listen to it. It knows more than you realize. You’ve got this. Become a fearless warrior with me.

Listen to your body and don’t overdo it

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My favorite time of year is finally here. My lawn is getting greener and greener due to the rain we’ve been having. It is begging to be cut. I’m actually feeling good enough to run my riding mower and get out in the sun for my adventure of the day but it’s raining again this morning.

I can already tell it’s going to be easier to manage a riding mower without a suprapubic catheter urine bag to lug around. I’m really liking having a urostomy. I think it’s one of the best surgeries I’ve ever had. It’s so freeing for me. I can move about without concern of what’s coming with me. And the pain is finally over. Yippee.

Yesterday I pulled out my weed whacker to edge my driveway and sidewalk to get the grass under control. I was able to cut the time in half from what it took me last year. I moved about better. I use my old powerchair to ride around the property. I call it my powerlawnchair.

There are a lot of projects I want to get done this year but I know I need to be cautious and not try to tackle them all at once. I’m going to take them one at a time and give myself lots of breaks.

That’s the important part. Listen to your body and don’t overdo it. You know your body best. I have to remember to stop before it starts to scream at me. If it screams, I’m done for days and days.

My right side is still giving me difficulties due to increased weakness but I’ve gotten pretty good at doing everything left handed. Even when raking the lawn I actually rake it using my right shoulder and left hand. Odd combination but it works for me. Sometimes you just gotta do what you gotta do… no matter how weird it may look.

One things for sure, you will always find me out in my yard doing something to beautify things. My next project is to replace the solar powered lights around my front entranceway. It always looks so nice all lit up at night. I bought some replacement ones last year all ready for me to get out and tackle the task.

I love living by myself even when days are hard. I love looking out my windows at all of nature that surrounds my house as the deer and bunny rabbits trapes around. I won’t stop loving life regardless of how hard things get or how impossible life becomes. I will always find something to make me smile!

Ready for surgery

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My bags are packed for a 6 day hospital stay. Not my choice of a resort stay but at least I will be taken care of while recovering from surgery on Monday morning. I have to be at the hospital at 8:00 AM, Feb 6th. Surgery will take about 2 1/2 hours. I will write to keep you updated while in the hospital. Don’t know what day I will post something but hopefully you will hear from my by the 7th.

I have to empty my bowels on Sunday starting at 2 PM. I have to down 4 litters of Gavilyte-G. Lemon flavored… and stay by the toilet so I won’t make a mess rushing to the bathroom. Ugh!

For those who don’t know my urologist has recommended the removal of my bladder and a stoma made with a part of my small intestines to empty my urine into a pouch on the outside of my stomach area. I won’t have any more stones to deal with. No more UTI’s. No catheters to change. Just a urine bag/pouch to change. It’s supposedly not be painful once healed. My urine will just be an open flow outside of my body. Kidneys will work the same. Just no bladder.

I’m a little nervous about it and hope I will heal quickly and learn quickly how to manage dealing with a urostomy bag. I’ve met with the nursing staff that will be teaching my after surgery how to manage everything. They are really nice and have already given me some products to play around with to get a little familiar with what I will be doing.

Keep me in your prayers. I will be doing the same for you. Hugs…

You deserve more and better things in your life

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You deserve more and better things in your life than you realize even though multiple sclerosis seems to have gotten in the way of you being able to achieve it. You have it within you to be the leader of your own life.

Take a moment and think about how your friends make you feel. Do they lift you up, or do they bring you down? If you feel bad about yourself after hanging out with a certain person, it may be time to say goodbye. Believe in yourself enough to put on your crown and hold your head high. You can’t wear your crown with your head down. Wrong friends will do that to you.

Learn to love yourself. There will be times you will have to apologize and forgive yourself for not being kind to YOU. Sad to say, you are your own worst enemy. Give yourself a pep talk by speaking positively to the situation. Words have power. If you keep thinking you’re a failure, that’s exactly what you’ll become. If you keep telling yourself you’re going to make it, you eventually will. That’s because our perception creates our reality.

Be kind to yourself. Never apologize for living your life your way. To expect no difficulties in life, whether through your own actions or sheer circumstances, is unrealistic. Difficult times happen. Allow yourself time to really look at your situations for what they are. Develop a habit of self-reflection. Try to quiet your mind and get rid of your biases first.

Do you speak to yourself by putting yourself down? Think about it…do you call yourself names out loud? Names like stupid, idiot, or worse? My mom used to say if you don’t have anything nice or useful to say, don’t say it. That includes how you speak to yourself. Try this: before you criticize yourself, think of 3 genuine compliments you can give instead. You’ll start feeling great about yourself. Try to talk to yourself like someone you love.

Prepare for a journey.

I’m fighting a monster called multiple sclerosis

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I have learned more about myself than I ever thought possible because of a monster called multiple sclerosis.

I’m braver now even though I didn’t know MS existed in my life until I was in my 40’s. I fought through mind numbing pain, muscle weakness and tears. I fought it daily with a sword in my hand while yelling, “Hiyah!”.

I’m stronger now because I had to be. My choice was fight or give up, but I’m not a quitter. That’s just not a part of my DNA. So fight, I did. I learned how to use a cane, then a walker and now a wheelchair. I learned what foods benefit my body the most and what supplements help me to cope.

I’m happier now because I’ve discovered what really matters most in life. It’s crazy how that happens. You face down a beast like MS and discover a strength that you didn’t even know you had and that many things in life aren’t really that important anymore. Hold onto true friends and family, and let the other things go. You don’t need the extra baggage. It will only weigh you down and hold you back.

I stand taller, figuratively, because I am a survivor. Yes, there will be struggles and pain. There will be times I may be fearful of tomorrow or even of the next step I need to take, but I will push to the end and give it I’ve got.

Remember, you are not alone in this fight. The great Rocky Balboa said, “The world ain’t all sunshine and rainbows. It’s a very mean and nasty place and I don’t care how tough you are, it will beat you to your knees and keep you there permanently if you let it. You, me, or nobody is gonna hit as hard as life. But it ain’t about how hard ya hit. It’s about how hard you can get hit and keep moving forward.”

Come fight with me.

Don’t treat me like I’m different

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My body is broken and sometimes my mind is too. My advice is don’t give up on life because everything has changed. If you’ve had a bad experience with a bad doctor, you didn’t cause that. There’s absolutely no shame in trying to find a new doctor who you know specializes in working with multiple sclerosis. That’s actually the reason why I was able to get my diagnosis. I went to a neurologist that friends had recommended.

I asked them, “hey, do you know a doctor in this area who specializes in MS?” I found that doctor and saw that they took my insurance. I actually ended up crying when the doctor said, “Oh no, I don’t need to do a ton of extra tests on you. I know exactly what you are dealing with based on your past tests and MRIs. Let’s try a different approach and see if it helps you.”

That day, I was having a hard time standing up and wound up hanging onto walls just to get to my first appointment. The doctor could see how hard it was for me. It was amazing to find a doctor that actually cared about me and what I was dealing with. Sad to say many people don’t find one.

Even though MS is not terminal, it’s a disease that will worsen over time. Before you judge me for my choices, remember that I have fought this battle alone. If you haven’t experienced this for yourself you’ll never know what decisions you would have made and until you’ve walked in my shoes or seen how far I’ve come on this broken path, know that I’ve done the best I can with what I have.

Don’t treat me like I’m different, that’s just not fair to do. I’m still ME and I have feelings too. Think before you speak, listen before you act. I’m not a statistic. I’m not a number or a diagnosis. I’m a person with different abilities taking on a different world. I prove everyday that I’m a miracle and will never give up.

 

I’m Raising $500 for the annual website costs of Positive Living With MS. Any amount would be a tremendous blessing and give this blog further reach to people living with multiple sclerosis. Caregivers, family members and fellow MSers have always enjoyed reading my blog. Many say that they would miss me terribly if I would ever go away. That I am a light of hope and encouragement that helps get them through their day. I was diagnosed with PPMS myself in 2013. Most of my writing is about my own experiences. I try to mix in humor as well as the reality of what life is like living with MS.

Show your support by going to this link

 

Multiple sclerosis has changed everything in my life

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I have a problem with expecting too much from myself which in turn hurts me more than helps. This year I have made it my purpose to evaluate my life and simplify everything I’m doing as much as I can. Is that even possible? There are things I want to do, things I need to do, and things I need to let go of. Multiple sclerosis has defiantly changed my perspective about everything in life.

Some of the top priorities for me are following a reasonable exercise routine, eating as healthy as possible and resting as much as possible to keep from overexerting myself. That’s not so difficult, right? Well, it’s not as easy as it may seem.

I have made my spare bedroom my exercise room. A place where I can stay focused on doing routines just for me. I have a recumbent bike to help me get my legs moving, stretch bands to help me with my upper arm strength and movement, a table to work on brain puzzles to keep my brain focused and challenged, and a set of parallel bars to help me walk again. Someday I’m believing to get to a place where I will walk on my own. I’m not ruling out any possibility but I’m not going to overdo it either.

I’m hoping to one day complete an MS walk and am still hoping that it can happen, I’m just making my plan as reachable as possible. I have prepared myself mentally for failure. The old me would have over-planned and made goals unreachable, the me today is just hoping for progress day by day. If my body won’t cooperate, that’s okay. There’s always another day. It’s an ongoing process…just no quitting is allowed.

I had to learn to let go of yesterday and the failures I’ve already made. To let go of the hurts that come from not being able to do the things I used to do. To let go of the pain MS brings along with it. To let go of the fears. To just let it all go.

Sometimes we have to let go of the person we once were in order to see the amazing person we are becoming. You get to choose who that person is. I know I see greatness in you. I see someone who is brave, strong and courageous. Someone who has been dealt a terrible hand in life yet is still trying to make the best of it. Someone who isn’t perfect, but then again who is? Someone who is weak in their body, but oh so strong on the inside. I hope you can see it too.

You are not a failure. You are not insignificant, useless, a burden or a disappointment. You are a beautiful, valued, remarkable person, and you have an incredible future ahead of you. You are amazing. Yes, YOU!

Living with MS is tough…but you are tougher. You are braver, you are stronger even when you are at your weakest, and you are doing it. I believe in you and know that you have a lot of amazingness to share with the world and to be a part of!

How do I know that? Because you are AMAZING!!!! So get out there and conquer.

Let your life shine through the chaos of MS

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When multiple sclerosis became a part of my life, just trying to come to terms with such a life altering disease was difficult. I went through periods of denial, anger, depression, why-me moments, and finally acceptance. Acceptance was hard. I had to re-evaluate my entire life.

Whenever something goes wrong in life, the first thing we do is look for someone to blame. Sometimes it’s God, sometimes it’s the people around us, sometimes it’s the doctors, but deep inside we have a sense of regret thinking we caused it by our own life choices. The helplessness we feel makes it hard to accept things the way they are. It breaks our heart. Were we going to be able to make room for MS in our life?

A person’s life can become completely destroyed when MS shows up. It has this way of flipping our world on its head, spinning us around and around creating dizzying chaos and confusion, and then leaving us to figure things out… many times all on our own.

That kind of whirlwind hurts. Some people may only experienced a slight amount of discomfort while others are left holding pieces of a shattered mess in their hands. It breaks you down no matter how strong you thinks you are.

If you look really close at my life, you will see the cracks and missing pieces from some of the difficulties I have been through because of MS. Things like increased progression, having to use a wheelchair, needing help for things most of the world takes for granted, ending a much loved career, financial struggles, and losing friendships.

My last MRI gave me bad news which has altered my future plans. There is moderate periventricular white matter disease, central cerebral atrophy which has progressed, over 20 mainly pericallosal as well as periventricular old burnt-out plaques, and a whole bunch of doctor speak that I don’t quite understand.

What does all that mean? MS is the reason for my trouble in learning or remembering things, having difficulty with problem solving, slowed thinking, depression, balance issues, and the reason I have almost non-existent trunk control which means I fall over easily even while trying to sit up. I weeble wobble in my chair.

My MS difficulties are much more pronounce than I expected at this time in my life but I refuse to be defeated. Even with all the issues I now face, there is still beauty in my life that shines through all the confusion.

You may be in the middle of a relapse heart right now. I know how badly it can hurt, but you are going to get through this and your life is going to become a thing of beauty. Don’t stuff the pain down deep inside trying to hide it away. Let the emotions out as they happen heal. Out of sight, out of mind doesn’t actually work.

Let it all out so you can heal. It takes time, but it will happen. Be patient with yourself and take it slow. Your life is a beautiful thing. Give yourself time to handle what is going on then let your life shine through the chaos.

Housing decisions while living with multiple sclerosis

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What do you do when your neurologist suggests that you move to an assisted living facility because your safety is more important at this stage with your multiple sclerosis progression? You don’t want to wind up in the hospital with a broken hip all because you fell and no one was around to help since you live alone.

What do you do when making meals becomes too difficult so you choose a bowl of cereal over making a well balanced meal? How about when taking a shower is more complicated because your hands won’t co-operate when you try to wash your hair or rinse the suds off your body after you lathered the soap. Or when getting dressed in the morning is such a chore that you decide to stay in your PJs the entire day. If you’re in anything else people that see you want to know why you are so dressed up even when wearing jeans and a t-shirt.

I’ve looked into the assisted living facilities where I live and the costs start at about $3,700+ a month which is not affordable for me and my insurance won’t cover the cost. I’m not on a government run program which would make it a little more affordable. I have Medicare and private supplemental insurance which thankfully covers all my medical bills to date but not long-term assisted care. There are limited long-term care housing that they cover.

I spent the weekend contemplating all of my options and of course I don’t want to lose my independence so I decided that I will hold onto my own home until I am no longer able to care for myself. It’s already wheelchair accessible and meets all my current needs. There are still some things that need to be improved on around me but for me it’s home. And besides the people in the assisted care facilities are much older than me so that’s another issue that I don’t think the facilities take into consideration. I’ve heard horror stories of younger people not fitting in and being miserable without people their own age around.

In-home care is much more doable but will still require help in paying the bill, but if I budget it correctly I can at least get someone to help me with bathing, meal preparations and housekeeping a couple of times a week. My current SSDI pays my monthly bills with little left over for anything else.

Thankfully a nurse comes to see me once a month to change my urinary catheter and I have access to the organization for weekly physical therapy and speech therapy in my home. I had put PT on hold but now that the weather is getting colder I am going to ask to start PT for my legs and hands. They always work to keep my muscles moving and help me to stretch my muscles which I need much more in colder weather anyway.

I decided that when my family is gone and I don’t have their support around me, I will sell my house and move to a retirement community. This way I won’t have to do any yard work, home repairs, meal preparations or housekeeping and there will be others around to do things with so I’m not isolated. I will still have my freedom to live the way that I want and hire in-home care to help when needed. That’s still a far away goal but one that I’m comfortable with.

None of those things may happen but I’m prepared mentally if they do. My goal is to live my life enjoying each day that I am given whether I’m weak and frail or full of energy and purpose. You always have a choice in how to live your life. Always expect the best to happen and do your best in every situation.

The constant motion of our lives means looking ahead, thinking through, making plans, and continuously checking off to-do list boxes. It means being one step ahead of something you can’t really know, planning for things without all the details and making decisions based on incomplete information. Each day with MS is an adventure in a world of uncertainties. MS may be taking away my ability to do everyday things but it won’t take my will to live the best life that I have.