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.

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A sleep deprived life

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My body has a problem with sleep. Either I have an inability to fall asleep even though my body is screaming for a much needed time of rest or I fall asleep at the drop of a hat without warning. Seems contradictory doesn’t it?

I’ve been known to suddenly fall asleep when I have company over and we are in the middle of a great conversation. It can be 10 minutes into the time together, my eyes wide open and I wake up without knowledge of what happened. It’s not because the topic was boring, just my body had given up responding and snoring seemed to be the best option. I call those times sleep attacks. It’s as if I’m sleeping with my eyes open.

But then there are times when I find it difficult to fall asleep and stay asleep. That’s the insomnia part of my day. I can wake up in the morning not feeling rested no matter how much time I spent in bed. No amount of added sleep seems to be helpful.

In life today, it’s becoming harder and harder to calm the mind. We are over-stimulated and overworked, and we find less time to do the things we enjoy because of the things we have to do.

I know the feeling of exhaustion that goes deep down into your soul. It’s awful. Having experienced it yourself, your view of sleep will never be the same again. When sleep comes, it will bring with it waves of gratitude because you know how rare it is. Don’t be too proud to not talk to your doctor about it. There are some drugs that help along with some supplements. Each person will respond differently so don’t be discouraged when you find that nothing works for you.

For me, extra doses of melatonin doesn’t work neither do other sleep aids. I’ve tried them all. I seem to be lucky if I get 3 hours of sleep at night before my brain kicks into overdrive and won’t shut up.

I think my bedroom needs to be set up in my old college physics class. Nothing put my to sleep faster. How I passed the class I will never know. I have no idea what life lesson I learned spending time there.

For now, cling to hope that restful sleep will come. Be gentle with yourself and encouraged. This too shall pass. Your body just needs time to catch up.

If you feel like you’re just surviving, that is OK. You are doing enough and I have no doubt you are doing a great job at it. Know that you are not alone.

It will take you by surprise but suddenly life won’t seem like such a blur. I still wake up with a song in my heart grateful of the life I have whether sleep deprived or not. Take heart sleep is coming.

 

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.

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There’s an earthquake happening inside my body

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I woke up this morning to an earthquake.  The entire room was shaking. No wait, it wasn’t the room. It was just ME. My normal hand tremors were happening in other parts of my body as well. My legs, my arms, my head…everything was shaking. It seemed like all of my nerves were on a quadrillion-trillion dose of Red Bull or had way too much caffeine.

Much of it has calmed down now after taking a few muscle relaxers and some pain meds, but I still have the feeling of tremors even though I can’t see them. I have a weighted bracelet that helps to calm things down in my hands but not much is helpful to control the other parts of my body. It’s such a weird feeling too. It’s almost as if my body is trying to jump out of my skin. Now, the only problem is, the muscle relaxers and pain meds make me sleepy. We’ll see how well that goes today. Sleep or tremors. Not sure who is going to win this battle.

It’s so hard to get through a day when you spend a majority of it fighting your own body. When you have to think just to take a step or concentrate in order to move your body in the direction you want it to go. Most people just don’t get it when you try to explain what’s happening. It almost makes you feel as if you’re going crazy.

Nobody should have to think this hard to do the things that everyone else can do without even thinking. I’ve already spilled my coffee trying to drink from a no spill cup, tossed my grape jelly toast on the floor trying to take a bite, and kicked the coffee table for no reason at all.

Our bodies have been trained since we were toddlers to move and function: to walk, pick things up, sit down, stand up, reach, and even do the happy dance. But when those wires get crossed or damaged, and the message transmitted from the brain to the rest of the body becomes disrupted, there’s no telling what might happen. We may want a certain leg to move and it won’t, or need a hand to function properly and it refuses to obey, or need a tremor to stop shaking everything in sight without success. But when sensation is crazy too…that’s an entirely different level of weird.

When it feels like water is dripping down your cheek and you find yourself constantly checking just in case it’s real, or when it fees like bugs are crawling across your skin and yet there’s not an ant to be found, or when you feel millions of needles stabbing into your hands and feet, or when it seems like every muscle in your body is twitching and on edge…all happening inside your body where no one else can see. You begin to feel like you are losing it.

I have been known to kick the coffee table, throw things across the room, drop my drink and even hit people…all due to multiple sclerosis. At least now, if someone says something stupid and I smack them upside the head, I have a valid reason for my actions. “Oops, sorry…that was MS, not me!”

It’s hard dealing with an out of control body,  but life goes on and nothing ever seems to make sense anymore. This unseen monster is too weird and unexplainable. Life changed without warning and I can’t send it back.

 

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

 

It Takes a Village to Navigate This Life with Multiple Sclerosis

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Do you know that old saying “It takes a village to raise a child”? Well, I happen to know for a fact that it takes a village to navigate this life with multiple sclerosis.

I was always an independent person. One of those “I can do it by myself” kind of people. I could change the oil in my car, repair a leaking pipe under the house, open those impossible pickle jars and move furniture without even breaking a sweat. Having to shift that type of independence after MS came along was really hard for me.

I found that I needed help getting to appointments because my eyesight and motor function had decreased making it unsafe for me to drive myself, especially if going long distances.

I needed reminders (albeit sometimes annoying) for some of the simplest things in life like “be sure to set your trash out today for pick-up.” Something I wouldn’t have forgotten in times past.

I needed help pulling wet clothes out of the washing machine because my hands just could’t properly grip the wet clothes. Then folding the clothes and towels once they were dry would take me hours to complete.

I found that there were tons of things I needed help with. As an independent, I-can-do-it-myself kind of person, that was not an easy thing for me to come to terms with but it has gotten easier over time. I can still be a bit stubborn, but I know my limits and reach out when I know I need help.

If I can enlarge my circle of support, I am always willing to give it a try. I was even talking to my neighbor yesterday about calling on her if I have trouble opening those easy-to-open packages that aren’t really easy to open or when I can’t get a pill bottle open. She was more than happy to be asked to help out.

One thing I found to be extremely important is to let those that are helping you out know just how much you appreciate what they are doing. If they know you value their support, care, and love, it gives them a sense of purpose and they know that the things they do matter. Even the small things like picking up the mail or stopping by for a chat should never be taken for granted.

People need to know the time they put in to helping you makes a difference. They may say you don’t need to thank them, but thank them anyway. It always matters.

I have had some people that would always drag me down with their know-it-all advice and negative attitude, but do you know what I did? I cut my ties with them. Sometimes that is the healthiest thing you can do. MS is not any easy things to deal with and you don’t need any added stress to your day making things worse. Set up boundaries and don’t back down.

Surround yourself with positive people that lift you up. You deserve to be happy.

Never stop asking questions

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Making my way through the medical insurance nightmare has been a challenge since being diagnosed with multiple sclerosis. It wasn’t something I thought much about before MS came along. I never really got sick so health insurance and my own wellbeing just wasn’t a priority. Talk about a learning curve. I was thrown into things head first and then bounced around a few times before landing hard with a thud.

My life was suddenly filled with doctor appointments, medications, unpredictable symptoms and massive medical bills. I found myself in this new world of the chronically ill and I didn’t like it one bit. To be honest with you, it scared the crap out of me more than anything I had ever been through.

I think the first year after I was diagnosed, I spent much of my days in a mind numbing fog. I became overwhelmed with the vast amounts of information I found online about MS and the high costs associated with it. The more questions I asked, the more questions I had.

I became more concerned with being able to afford my co-pays and medical insurance premiums than with the latest phone apps or music downloads. I found myself searching for insurance plans that made MRI’s and durable medical equipment more affordable. I researched Medicare, SSDI and early retirement. I looked for ways to afford home modifications and accessibility aids.

I discovered that no one can look out for me better than me.

When I was searching for a supplemental insurance plan that would cover all the things Medicare doesn’t, the monthly cost was too high for me to be able to afford. So, what did I do? I got online and through asking tons of questions came across a foundation that helps people with MS pay their monthly insurance premiums. That was something I would have never known about if I didn’t dig around for answers myself.

I found that asking questions is the best thing anyone can do for themselves.

When the cost of my pain medication went up, again I got online and found that my Medicare drug plan had an exception form that can be submitted to request a lower co-pay. I had my doctor help me fill it out, sent it in and the cost of that one medication went from $45 a month to $3. The insurance company won’t tell you about that option in bold print on their home page. It’s something you have to ask questions about and search for yourself to find. Even the doctor didn’t know about it.

Then there was the time a few years ago when my powerchair was damaged in a car accident. I was okay but my chair got banged up a bit. I discovered that my homeowners insurance covers things like that. I was able to get a new chair to replace the broken one. Who knew homeowners insurance (or renters insurance) worked that way? I sure didn’t. Another lesson learned by again asking lots and lots of questions.

I don’t think I will ever understand insurance or how they calculate the costs associated with their services, but through asking tons of questions and digging around for answers I have been able to ease much of the costs associated with MS and living with a disability.

You have to be your own advocate, do your own research and never stop asking questions! You may not be able to control the progression of your MS but that should never stop you from taking control of your own health care.

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.

Shake it off and keep going

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I’m back after the holidays. Am I supposed to feel rested? It didn’t work out that way for me. I have no idea what rested actually feels like, but I’m glad I’m back. Hope you didn’t miss me too much. (grin)

I heard a story about a farmer named John that was out feeding his animals on the farm when he noticed that his beloved donkey, Freddy, was missing. He walked all over the fields but couldn’t find him anywhere. Eventually he stood still for a moment, and he could hear the donkey wailing in the distance. He followed the sound until he came to the well. He leaned over and saw Freddy at the bottom.

Farmer John could see the distress on the donkey’s face and tried his best to get him out of the deep hole. He tried ropes, ladders, and planks, but nothing worked. The farmer sent down water and food to keep Freddy hydrated and fed while he could to make a plan to get him out of the well.

After three days, John gave up because he realized that there was no way for him to get Freddy out of the well. He spent one more day trying to save him but after the fourth day of trying unsuccessfully to retrieve Freddy from the well, he gave up. He called his neighbors who were also unsuccessful.

The farmer decided that the donkey was old and the well was already dry and needed to be covered anyway; that it really wasn’t worth pulling the donkey out of the well. The neighbors joined John in using shovels to throw dirt down with shovels. They were going to fill the well up and bury Freddy in it.

At first, the donkey cried horribly as he realized that the farmer had given up and was going to bury him while he was still in the well. Then, all those shoveling dirt closed their ears not to hear the sad wails of Freddy.

But then Freddy stopped crying, and everyone peered over the edge to see why he became silent. But, instead, they saw the donkey standing still, and as they shoveled, he shook the ground off his back and stepped on it.

Freddy continued to do this, as they shoveled he took a step up until he was level with the ground. Then, he looked at them, gave a neigh, and ran off to the pasture.

Like Freddy, sometimes we are given a hard knock in life, and people try to help but they eventually give up on us. But it is important to keep going, shake it off and take a step up until you are out of the deepest of wells.

Life is going to throw dirt on you, all kinds of dirt… the trick to getting out of the hole is to shake it off and use it to step up. Each of our problems are steppingstone.

Even the most impossible of situations are possible. Maybe not in the way we want them to be or how we think we need them to be, but somehow they work out. You have already faced some nearly impossible times and come through them maybe a little bruised and broken, but you made it. When you see them show up in the future, don’t panic. Take a deep breath, and hold on.

For me, my faith in God gives me the strength to keep going. At the end of the day, most of our regrets will lie in the things that we were too afraid to try. Fear is one of the biggest deterrents of success. If you never get the courage to try, you will always fail. Will you give up after a few setbacks or will you shake it off and keep going?

Each person is different in how they deal with the impossible, just know that you have within you the strength to go on. Shake it off, step up, and keep going.

The Holidays are upon us

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The Holidays are upon us and I want to let you know that I will be taking a break for the remainder of the year. Expect my blog posts to restart again early 2023. I will still be sparingly on Facebook and Twitter during this time. You can’t get rid of me entirely. (Grin)

I deserve this break and remember you deserve it too. I will be spending my time…


 
Merry Christmas, Happy Hanukkah and Happy New Year to all.
I’ll see you soon.
 

I want to see you be brave

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I think one of the hardest things about living with multiple sclerosis is the pressure from certain people to just get better. It’s almost as if they think I have this secret power tucked away in my sock drawer that will rid my body of all the symptoms, difficulties and struggles MS is causing in life, but for some unknown reason I choose not to use it.

When I am unable to join in on the outings, parties, dinners and shopping trips people are taking part in, the vibe I get at times from them is one of doubt that things could actually be “that bad.” I can almost see the thought bubble above their heads as they wonder how it is I can go from feeling okay one minute to feeling like crap the next.

The best thing anyone could ever do for someone living with MS is to allow them to decide how they’re actually feeling and what they are capable of doing. I like it when people leave it up to me to decide what I can and can’t do, and are okay with my decision. After all, it’s my body…it’s my life. I should know how I’m feeling.

I don’t know what the next moment in my life or tomorrow will bring. I don’t know if today will end in tears or laughter. I don’t know if MS will get the best of me or if I will be able to muster up enough strength to fight one more day. I don’t know if my hands or legs will fail me when I need them the most. I don’t know if there’s really a light at the end of the tunnel or if I’m headed towards a tragic collision with the 6 o’clock train. There are a lot of things I simply don’t know.

Those that love me enough to give me the option to choose and are okay if my decision is different than what they want or planned for…those are some of the most amazing people on the planet. No one should ever have to spend time defending how they feel.

When you find yourself sitting in a puddle of your thoughts wondering where everyone has gone, know that there are others with MS who understand. We may be separated by miles and miles of distance and separated by oceans and seas, but we are connected through wires and keystrokes. We are in this together. I want to see you be brave with everything you go through. You can do this.

Multiple Sclerosis has taught me the value of living

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Multiple Sclerosis has taught me the value and importance of living…really living. In looking back on my own journey, I have noticed the shift I made from being overly focused on achievements and promotions to building lasting friendships and choosing to enjoy the little things in life. Things like rainy days, moments of quiet, giggles and laughter, sunsets, butterfly kisses, “thinking of you” texts, and of course the much appreciated cup of coffee.

For me, spending time with the people I love, giving of myself to help the less fortunate, and spending some much needed time taking care of myself…those are the things that are important. If anything, MS has given my life a greater purpose because it has opened my eyes to seeing the value of life itself.

The following is the philosophy of Charles Schultz, the creator of the ‘Peanuts’ comic strip. You don’t have to actually answer the questions. Just read them through and you’ll get the point.

1. Name the five wealthiest people in the world.
2. Name the last five Heisman Trophy winners.
3. Name the last five winners of the Miss America.
4. Name ten people who have won the Nobel or Pulitzer Prize.
5. Name the last half dozen Academy Award winners for best actor and actress.
6. Name the last decade’s worth of World Series winners.

How did you do?

The point is that none of us remember the headliners of yesterday. These are no second-rate achievers. They are the best in their fields. But the applause dies. Awards tarnish. Achievements are forgotten. Accolades and certificates are buried with their owners.

Here’s another quiz. See how you do on this one:

1. List a few teachers who aided your journey through school.
2. Name three friends who have helped you through a difficult time.
3. Name five people who have taught you something worthwhile.
4. Think of a few people who have made you feel appreciated and special.
5. Think of five people you enjoy spending time with.

Easier?

The lesson: The people who make a difference in your life are not the ones with the most credentials, the most money, or the most awards. They are the ones that care.

What do you spend your time on? The key thing is to always remember that no matter what happens in life or how bad things may get, surrounding yourself with people who care and love you is what’s important. That’s what gets you through your day.

The people you remember are the ones that made a personal difference in your life. Strive to be that kind of person for others. You won’t be able to change the world, but if you make a difference in just one person’s life…that’s the world to them.