bandages

Covered in scars

If you could see my insides, you would see scar after scar after scar. I guess it makes sense that Multiple Sclerosis actually means Multiple Scars. You see, the nerves in my brain and spine have been chewed to bits…literally. Because of that, some of my nerves are short-circuiting and signals are getting crossed causing terrible chaos in my life. I guess you could say I’m a real live wire.

I have some nerves with such extensive damage that repair cannot be made. In their place now exists a black hole. A scar so deep that nothing could ever live there again. If you took the time to learn of my scars, you would hear about what life is like for me. You would hear of the pain I endure, the way my brain confuses thoughts and words, how my tired is different than most people’s tired, and how parts of my body have gone numb and lost their ability to function.

But do you know what else you would hear? You would hear about how strong I am and how at the end of the day, I’m still standing (even if only on the inside). I won’t quit even though I’m covered in battle scars. Those scars are my story…they are my life.

You may see me and think how amazing I look with the smile I wear or the cute outfit I have on, but if you took the time to really get to know me, you would see my insides and realize that my pain is real and that there’s beauty in my scars.

I may not be able to do the things you do because my wiring is a jumbled mess, but just because you can’t see what’s happening inside my body doesn’t mean it’s not there. I wake up each day to a fight…a war. Not one that I chose, but one I must endure. At times I am battle weary, but I will never be a quitter and I will never lay down my sword. I’m a warrior that way.

My scars are laid out like a constellation visible by an MRI. They shine bright even though they are hidden in the dark. When I pause to look at the stars in the nighttime sky, I see amazing beauty as I watch the lights twinkle and glow. But did you know stars are just broken pieces of matter? They are the scars of the universe. And yet even though they are caused by tragedy, they give hope to millions.

Today your sword may be heavy and your body tired…but you will go on. Each step that you take is a victory. Each muscle you move is a triumph. No mater what the day holds, you will not be defeated. You are a winner covered in scars bringing hope to others without your even knowing it. If I can endure, if I can keep going, if I can hold on…then I know you can too. Together we create an amazing display of sparkles in the universe. Together we shine.

My body heals itself at such a slow pace

I have noticed a strange phenomenon since having Multiple Sclerosis. I don’t have a clue if it’s actually related to MS in any way as I’ve never heard it talked about, but I thought I would mention it so others who are dealing with the same thing don’t think they are going crazy.

When I get something as simple as a pimple on my face (it’s not just for teenagers, you know), it will take a few months to fully heal instead of days as in times past. I’ve noticed the same thing happens with cuts too. I cut my hand over the weekend and although it is healing, it’s doing so at its own slow pace. Bizarrely slow, I have to say.

It could be due to some of the medications I take. I don’t take anything for MS itself as nothing has helped to slow down my progression, but I do take things for muscle spasms, pain, dizziness, help with sleeping and depression. A daily cocktail along with a slew of supplements and vitamins. It’s crazy because before MS I didn’t even take aspirin or cold medicine, now I have a rainbow collection of pills that would put a package of Skittles to shame.

When I was first diagnosed with MS I was taking a med called Rebif. I had to give myself intermuscular shots 3 times a week, similar to those taking Copaxone today. Those shots would bruise me so bad that over time I looked like I was being abused. I would have bruises on my thighs, arms and belly and they would take forever to heal. But the med would end up making me feel worse than MS actually did. I was medicating myself for the side effects of the medication. Such a vicious cycle.

Keeping a healthy diet helps to manage some issues, but it won’t rid the body of everything MS. I’m truly overjoyed for those that are able to fully manage MS by the things they eat, but it’s important for people to understand that not everybody has such great results. Each of us is unique with our own cellular makeup and our own responses to diet and meds.

If you face slow wound healing, know that you aren’t alone. I’m sitting here with a bandaged hand and a pimple on my chin to prove it happens.

Sleep? What’s that? – Today’s guest blogger on MSAA’s MS Conversations

What an honor it is to be today’s guest blogger on the MSAA (Multiple Sclerosis Association of America) website. Go check it out, leave a comment, sign up for their newsletter, and support their work as they dedicate each day to improving lives through ongoing support and direct services to individuals with MS, their families, and their care partners.

Read today’s post: 

http://blog.mymsaa.org/sleep-whats-that/

 

 

peanuts

You don’t need to go through a life with MS alone

In a job interview I was once asked, “If you could be a fruit or a vegetable, what would you be and why?” It was one of those questions used to evaluate a persons personality and quick thinking. I sat there for what seemed like an eternity as I mentally browsed the produce isle of the grocery store, and the thought that tumbled out was, “I would be a peanut.” Continue reading “You don’t need to go through a life with MS alone” »

sunrise

What are you waiting for?

Have you ever had one of those moments when you wished life wasn’t so hard and longed for the negative thoughts rattling around in your head to just shut up? You know…those thoughts that make you feel as if the world is caving in and sucking you down with it. From my experience, it’s easier to handle physical pain than those nagging, constant defeatist thoughts that keep talking and talking and talking. Things like…

Why me?
Why now?
What if…?
How am I going to…?
What am I going to do?

They come at times when you least expect them. It would be different if they let you know they were on their way so you could be prepared and ready for their arrival. This way you could lock the door, bar all the windows, and if you’re anything like me, you could have an Uzi ready to blast them to kingdom come. (Now that would be an amazing fireworks show!)

But, no, they aren’t polite or respectful. They come unannounced, push their way in and make themselves at home. It’s not easy kicking them out either. Although they drive you crazy and wear you down, you learn to put up with their constant nagging and even give them a place to stay…kind of like an unwelcomed relative that comes to visit and then decides to move in rather than going home.

Any thought that is wearing you down shouldn’t be a part of your day, or your life for that matter. Negative thoughts are real and they affect every person on the planet. If someone tries to tell you they never have any…they are lying.

You can’t go a day without something popping into your head that’s negative. It’s a part of human nature. The key to dealing with their entry into your life is deciding what you are going to do with them. That’s what makes the difference. Acknowledge them, face them, learn from them but don’t allow the weight they place on your life to hold you captive. You get to choose if you are going to give them a seat of honor at the dinner table or not?

You are not worthless or unimportant. You are not disabled, differently-abled, unable or incapable. You are not your disability. You are a person who can do the impossible. I mean that too. Don’t let anything get in your way…not your own thoughts, the opinions of others or even the limitations given to you by Multiple Sclerosis.

I once saw someone without arms playing the guitar. I mean really playing. He didn’t let the fact that he had no arms limit his dream. He found a way to make the impossible possible and he just did it. You can find story after story of people doing the impossible. People who chose to not allow their limitations keep them from living.

The impossible happens every day. It can happen in your life too, you just have to determine deep down that you can do it. Dreams don’t happen overnight and they never happen if you aren’t going to do something about them. Just wishing something to happen doesn’t make it a reality.

You will fail. I won’t lie to you and tell you it’s going to be easy, because it won’t. It’s going to be hard and you will fail more than once, twice…okay, more like a gazillion times. It will take lots of work, but the only thing limiting you is you…your own thoughts.

Having a disability totally sucks, but don’t let that stop you from doing the impossible.

Broken but still standing

I know how difficult things can get. It’s not easy making it through the day when my body is screaming at me. I didn’t ask to be the strong one. At times when people tell me to stay strong, I actually feel so weak that I have no idea how those words are suppose to be comforting. To me, they feel more like a punch in the gut than the gentle hug they were meant to be.

Stay strong? I don’t like to admit that there are times when being strong is simply not possible. Oh, I try. Boy, do I try. But when I wake up in pain, exhausted, weary, and unable to feel parts of my body because the numbness keeps creeping up my legs, arms and even my face…the struggle crumbles me. Stay strong? I feel more like a crumpled piece of paper than a rod of steel.

How am I supposed to stay strong when I am broken? People who say they never break are either lying to you or to themselves. I have been broken many times and feel more like a pieced together puzzle that’s been glued together over and over again than a strong oak simply bending in the wind.

It’s a great thing to think about, being a tree swaying in the wind, but anyone who has ever lived through a tsunami, hurricane or tornado knows that even the strongest of oak trees break. It may still be standing when the storm subsides, but scars are left behind as a reminder of what once was as branches and sometimes even the trunk breaks.

The truth is, Multiple Sclerosis changes you. It leaves scars both in your brain and spine, but also in your heart. You change. The storm you are enduring…people can’t see it. Some try to understand, but without living in your body and experiencing your journey by walking in your shoes, they just can’t understand the mental and emotional pains you face each day along with a slew of symptoms. They don’t know how often you cover your tears with a smile and piece together your heart with bubble gum and shoestrings.

Are you stronger because of MS? Absolutely you are. You are stronger even in the breaking. You have endured much and just like how a tree grows new limbs once a storm has torn it apart, you are growing and changing every day. You may be at a place where you feel like the storm is overtaking you, but the winds will calm and the sun will come out.

Hold on with everything you’ve got, then when you find your strength again…stand proud of what you’ve come through and all you’ve overcome. You may look tattered and worn, but you are still standing. That, my friend, is how warriors are made.

Not many people can make it through a storm, break, then keep standing…but you are doing it. So the next time someone tells you to stay strong, smile in your brokenness realizing that your scars speak of your strength and tell a story that only a warrior can tell.

Depression is real

Depression is real. It’s not the same as being sad or feeling blue either. Everybody experiences moments of sadness and has times when the tears flow easily because of an unexpected life change. But with sadness the sun comes out, the tears dry up and life goes on.

Depression is more intense than that. It’s felt deep, it hits hard and it lingers for days, months and sometimes even years without a true grasp as to why. It’s not a part of your imagination or something you’ve made up.

Life changes living with a chronic illnesses. It changes daily and that can be a hard thing to deal with…living a life filled with uncertainty and constant change. One day you may wake up feeling great and the next day you find you can’t even get out of bed. That kind of turbulence has a tendency to wear on emotions and brings with it a feeling of hopelessness and despair.

I understand how easy it is to grow weary and tired, to go through periods when you would rather hide away than face another day, to become overwhelmed and long for just the tiniest amount of relief.

Our lives are filled with people but sometimes it simply takes too much energy to be around them. Sometimes it’s not even being around them that’s the hard part, sometimes it’s just that putting on a real smile takes too much energy. No one likes to fake-smile their way through a day, but sometimes we do it because we have no other option.

Know that you aren’t alone. I think everyone hits a place in their MS journey when depression becomes real, tears flow, reality sets in, and choices have to be made. Hard choices. How do you bounce back from a deep, dark place of despair? How do you shake feelings that are so overwhelming you find yourself drowning? How do you learn to live again when you feel as if there’s nothing left to live for?

Please know that it’s okay to ask for help. There’s nothing wrong in reaching out to your doctor or others for support and there’s nothing wrong in choosing to take a medication to help you get through the turmoil you find yourself in. I know how hard it can be, but don’t try to make it alone. We need one another and we need to be able to talk about what’s happening deep inside without fear of being judged or not taken seriously.

I know it’s not easy, but you can rise above the chaos. You can pull out of the messiness that life throws at you and rise above it all to a better place; a place filled with hope, smiles, laughter and joy. It starts with you taking care of you first.

When you feel like you are sinking deeper and deeper into nothingness, you have to put everything else aside to focus on yourself. Yes, you are that valuable. You matter!

Never apologize for who you are. You are important, loved, special…and you are going to make it through even this. It’s okay to be real, to hurt, to be human. Let the tears flow but if you find yourself hanging out in the puddles for too long, reach out for help.

Sitting on the beach

You didn’t do anything wrong

It’s hard to explain to people why you aren’t a quadriplegic or a paraplegic even though you have lost much of the feeling in your feet, legs, hands or arms. It seems in their minds that if you have no feeling in them, then you shouldn’t be able to use them. It can be hard living with a chronic illness that people can’t see.

I love people’s curiosity about MS, especially the young people. Those who ask questions and really want to understand what MS is all about. I admire their questions and welcome them because it gives me a chance to educate people about how my insides really feel and the struggle I face every day.

The people that I have the hardest time with are those who choose to not understand and not care. They could be family members, neighbors, co-workers, bosses, friends, or strangers. Their lack of care and their choice to not understand speaks volumes about who they are as a person. It’s a heart issue on their part…it has nothing to do with you.

When someone attacks your inability to do something or your pain and struggle with statements like “suck it up, it can’t be that bad”…it’s those people who need a moment living with MS to understand that it really can. If I could give away my MS for just a minute in time, I would give it to those people so they could get a reality check.

What I have learned over the years is that you will always meet people with a lack of compassion or understanding. Don’t let their ignorance get you down. It is showing their weakness, not yours. Do your best to walk away (or wheel away if in a chair) and shrug off their insensitivity. Yes, it can break your heart. I know the feeling of not being understood, but you can’t let their insensitivity get in your head and make you think you are “less than” or unimportant and useless.

You didn’t cause your body to turn on itself and begin attacking your Central Nervous System. You didn’t eat or drink the wrong things, live a bad life or not take the right kinds of supplements. MS just is.

I know I say it often, but keep your head up. You are going to make it through today. Don’t listen to other people’s negative opinions…or yours for that matter. You are amazing and a treasure. Put a smile on your face today and fight on.

rainbow and sunshine

Don’t let Multiple Sclerosis steal your smile

Just so you know, I have my bad days too. I have times when the struggle to think a clear thought causes me to cry rather than laugh. I know what it feels like to be overlooked when plans are being made by friends or co-workers. I know how exhausting, painful and utterly depressing life can be when Multiple Sclerosis just won’t give you a break.

And it’s okay to feel like that. It’s normal. It’s actually quite healthy. It just proves that you’re human. That what you are going through is real. No one…and I mean NO ONE, gets through life only experiencing sunshine and roses. We ALL have moments of mud puddles and torrential rains.

Did you know that without a bad day we wouldn’t know what a good one was? Without the bad things in life…the good wouldn’t really matter. In a way, you could look at it this way: as being grateful for the bad times because they make the good ones that much more enjoyable.

We all have bad days…but we also have the opportunity for good ones. So if you are in the middle of a bad day, bad week, bad year…know that a good one is coming.

Sometimes they sneak up on you without you even noticing. You catch yourself humming a tune as you rinse off the dishes or whistling as you start a load of laundry. Other times it’s more like you won the lottery as moment after moment piles on top of you of great and wonderful things. You find yourself happy and wearing a smile the entire day, week or year. You feel blessed, wonderful, relieved, and care-free.

Those exhilarating times are amazing when they come. They are a welcomed relief to the struggle. Don’t let the fact that you are having a hard time smiling today keep you from smiling tomorrow. Don’t give MS the satisfaction of stealing your smile.

The good and bad ebb and flow just like the tides of the ocean. That’s why it’s so important to learn how to ride the waves. This way when the waters swell and the waves begin pounding at the shore, you won’t go under. You will simply ride it through. And when the waters calm, you will be able to rest.

If you are in the middle of a storm right now, hang on, it will get better. If you are in the middle of glorious rest, hang on and tuck those precious moments down into the deepest places of your heart to be remembered for all times. Never lose your smile. Carry it around with you everywhere you go so that when the bad days come, you will have something to pull out and wear.

It’s an amazing thing to see someone smiling in a storm. It’s like finding a rainbow or watching rays of the sun as they peak out from behind the clouds. You have the ability to do that…to be that. To be something beautiful in the dreariness of life.

Be the rainbow, be the sunshine, and help someone else be the same. Imagine how bright this world would be if we all found our rainbows and sunshine at the same time. Never give up hope!

Help, I can’t get up

So I had this bright idea to scrub the floor yesterday and since I’m a bit OCD, I chose to get down on the floor and lug my body along with a bucket of vinegar water across the room to ensure that every nook and cranny was cleaned.

I didn’t crawl around on my hands and knees as I would have done years ago. For me that’s an impossibility. I am unable to kneel due to numb and weak body parts. I just scooted myself around on my butt. I’m sure I am not the only person who does that. Surprisingly I am pretty good at pulling my body around on the floor. I’m actually better at that then I am at walking.

When I finished cleaning the floor, it came time to get up. Now for me that’s a big deal. I am definitely better qualified at get down on the floor than I am at get up. The thing is, even though I know this fact about how my body functions, I still disregard it and find myself in these crazy predicaments.

It took me over 30 minutes to make my way off the floor. I tried all my normal tricks to no avail. I’m sure if there was a camera focused on me at the time, I would have looked much like a beached whale. I simply had no strength to pull myself up.

As I sat on the floor in tears and feeling defeated, I came close to calling a friend and asking them to leave work to help me up from the floor, but my stubborn determination won out.

I remembered a video I had watched a few years back on how to get up from the floor MacGyver style! I used the “book method” since I had a nearby bookcase loaded with books. You have to watch the video to know what I mean, but I slipped books under my butt to slowly raise myself up to a height where I could pull myself onto the couch.

It took a bit of work, but I made it. I did nothing the rest of the day, but felt proud of myself for the accomplishment. It’s funny to me the things that make me feel proud lately. Getting up from the floor may seem trivial to a majority of people, but for me it was monumental.

Don’t avoid asking for help. If someone had been home with me, I would have surely had them help me get up. But sometimes you are the only one around and you have no other choice. You have to push through and figure out a way to make things work.

Never let a moment of defeat cause you to give up. We may have to do things differently than a majority of the population, but with a bit of creativity, ingenuity and determination anything is possible.