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Chocolate… is it good for multiple sclerosis?

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It’s been known for years that flavonoids in cocoa help fight fatigue. These chemicals possess anti-inflammatory properties that may be especially beneficial for people with multiple sclerosis. I know that may sound strange to you, but cocoa (chocolate) has been studied for just that purpose. Amazingly enough case studies show that eating cocoa does just that.

Let’s face it, no matter how you enjoy it — as a candy bar, in a hot drink, drizzled over ice cream — chocolate brings joy. It’s a wonderful flavorful treat. Now, I’m not talking about melt in your mouth milk chocolate, but dark chocolate is what has most of the health benefit for our bodies. Dark chocolate has between 50% and 90% cocoa solids. The higher percentage the better.

I don’t know if it’s because dark chocolate has a slight bitter taste or because you need to ingest it slowly to actually enjoy it, but I happen to think it’s a great alternative to pharmaceuticals. I have always said that the day after a chocolate filled holiday is my favorite day because chocolate goes on sale. I don’t know if it will be on sale after Valentine’s Day this year as in times past, but any discount would be welcomed due to the high price of food around the world today.

Results showed in the cocoa study that participants experienced a 45 percent improvement in fatigue. In addition, the high-flavonoid group was able to walk farther than those in the low-flavonoid group during a six-minute walking test. They also reported less pain.

MS is a challenging disease, and it requires innovative approaches to find ways to prevent, diagnose, and treat it. Could chocolate make multiple sclerosis fatigue better? Only time will tell but I welcome the challenge.

With multiple sclerosis you can’t control your body

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When I was diagnosed with multiple sclerosis, I saw all the good happening in my life disappear as if a sinkhole opened up around me. Many of the things that I had planned was just washed away. As the days passed I saw my lifelong career finished, friendships lost, finances depleted, and any motivation I had to try and further my life began fading away.

It was replaced with an overwhelming amount of depression along with hopelessness, dread, and fear as my body stopped functioning due to loss of mobility, body tremors, numbness, urinary incontinence, pain, brain fog, relentless fatigue, vision difficulties, and speech problems. Whew, that’s more than I ever expected and it happens to change moment by moment. No day or hour is the same and new problems kept arising.

I didn’t see anything good happening in my life. As the days went by and my progression worsened, I was convinced my life was over.  Forget about that long list of problems and issues I now face, if you’re like me, if you don’t forget the symptoms you are experiencing you will forget how to pronounce them or what word to actually use to describe them.

But I have to say that regardless of MS, I found I can accomplish anything I set I mind to. I end up laughing at myself for my crazy brain fog moments and try my best to take each moment to pause and breathe.

I found that with hard work and determination I can do anything. I may do it differently than in the past but who cares what I look like or how it’s done. I sure don’t. MS has rid me of having to appear put together. I drool, fall down, drop things, and forget anything someone tells me, but all I can say is oh well and just keep going.

Like, I can deal with my blurred vision if I look through just my right eye and don’t try too hard to focus when in motion. That wouldn’t end well. Between blurred vision and loss of color clarity in one eye, every day is an adventure.

I can walk with parallel bars if I hold onto them even it’s only for 5 steps, but hey, it’s 5 steps… yeah! If only my world was surrounded by them and followed me with a chair to sit in every few steps I take, I would be able to go anywhere on foot. But I’m proud of my ability to function in my powerchair called an iLevel which gives me the ability to reach things that would normally be out of my reach affording me the opportunity to set up my kitchen and bathroom to use the upper cabinets without the hinderances I had before.

The numbness in my body has become something that doesn’t subside. Although it’s there constantly, it’s something I have be aware of due to possible injuries I may get with sharp objects and extreme temperatures. I have had my fair share of burning myself without realizing I’m touching something hot, so I deal with if mostly by not giving in to the frustrations that happen when I get a bit absent minded. I have had broken bones, burnt hands and deeply cut fingers all because of it, but they are my battle scars and I wear them proudly.

Now the tremors are one problem that is a bit more difficult to deal with. I had an issue just last night when I was heating up a bowl of noodles and in the process of placing the bowl on my lap, my right hand had a crazy spastic moment accompanied by tremors and the bowl went up and fell spilling everything on the floor as well as on me. Of course when those kinds of things happen I dread the clean up, but while cleaning up I just laugh at myself thinking, I knew that would happen… which of course I didn’t, but it has just become more possible than random and I again end up in laughter mixed with tears thinking “it could be worse”. Then I made a peanut butter sandwich.

When you are filled with anger and start questioning your existence. Wondering why MS happened in your life? Why you’re facing the challenges MS brings? I can tell you that you’re not a bad person. God doesn’t hate you. You are going to be okay. Really… you are.

With MS and all that it brings, you can live life to the fullest. Don’t dwell on the past. You can’t change anything that has happened to you and wishing that things were different doesn’t help anything. As you have probably noticed, with MS you can’t control anything including your body and what it will do next, but the lack of control forces you to look at what you do have and truly count your blessings.

The best thing of all, you can control your attitude. Having a positive attitude in a negative situation will strengthen you and give you the needed determination to go further than you thought. And do it with  gratitude. You can accomplish anything. I believe in you as we go forward (sideways) together.

What being brave feels like

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I know how hard it is to push through the murkiness and brain fog that surrounds you all because of multiple sclerosis. You don’t deserve the troubles it brings to your life. You didn’t cause it and you can’t seem to escape from its hold on you.

It’s almost like you are stuck in a pool of quicksand that feels more like concrete than murky water. At least with murky water you can move and keep you head above the water line. With concrete you just sink to the bottom like a rock.  I have had my fair share of bottom sinking moments. I have the bruises and broken bones to show for it.

At those moments all I know to do is cry. I don’t feel very brave when that happens. Do you know what makes me feel brave?

I feel brave when I stand up and don’t let people tell me who I am or am not.
I feel brave when I face the monster that has tried to destroy me even while shaking in my boots.
I feel brave when I hold someones hand so we can face this journey together.
I feel brave when I put on my socks without falling over.
I feel brave when I ask someone for help.
I feel brave when I tell someone to their face that I will not be treated in a certain way.
I feel brave when I stand my ground about the medications I will or won’t take.
I feel brave when I tell someone how much they mean to me.
I feel brave when I make it through a day with less battle scars than the day before.
I feel brave when I manage to get out of bed while my body is screaming at me to just go back to bed.
I feel brave when I use the toaster without jumping out of my skin when the toast pops up.
I feel brave when I know that MS can’t sink me.
I feel brave when I actually enjoy my alone time without feeling guilty.
I feel brave when I help someone else to be brave in the face of what they fear.

Keep fighting the good fight. Peace, love and lots of chocolate to you…

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

 

Life is crazy right now

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Sometimes life grabs us, takes hold and shakes us hard. We are left with our head spinning and we are desperately trying to just hang on. At those times we wish life would give us a break.

Life is crazy for me right now. I can’t keep up with everything going on. I am on day 3 of steroids with 2 more days to go. I have noticed a bit of energy returning which I so need but it can’t come quick enough. I’m trying to be watchful of the foods I eat because steroids have a tendency to bulk the body up. I don’t want that. In those moments, I have learned to give myself grace. I know I won’t make perfect choices, but some forward motion is enough.

When I’m exhausted and struggling to get up in the morning, I may not spend my time in deep thought but I know I still need to care for my body to ensure I can care for those around me. I have to let go of the guilt and shame that comes along with it.

I may not be able to write every day and pour out my heart how I want to, but it is life-giving and important to me to share with you, to walk together. So I’m finding little slices of time to connect with you, usually between naps.

It’s completely acceptable for the laundry to go unfolded so I can spend a few precious moments with friends and family. It’s okay if I have to rely on eating out a bit more. I’m doing my best with what I have right now, but that doesn’t mean I need to spend hours and hours on Facebook or X.

Maybe you’re dealing with your own health issues that scares you with each passing moment. Maybe you’re swamped, unbearably busy at work, or dealing with intense financial stress. In this crazy season, hold yourself to a gracious standard of love. Let the little things go.

Whatever it is, focus on what matters and what is non-negotiable. That’s your baseline. Let everything else be drenched in grace and give yourself a break.

We’ll practice this together.

The multiple sclerosis storm you are in

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I went to bed with rain coming down and woke up to the same. It’s a rainy day out. I can hear the pitter patter of the drops as they hit the roof. It’s definitely going to be a wet kind of day, and I have a few appointments to go to so it looks like I will probably be getting wet in the process.

Yet even though it’s raining out, I know it’s not raining because of me. It’s not my fault the clouds are dumping water out and mucking up the day. There’s nothing I can do about it either. I can’t control the direction it sends me in or the troubles it leaves along the way.

It’s the same with living with multiple sclerosis. It sweeps into your life and attempts to take you out. You do all you can to tame it and make life manageable but it’s not easy. The destruction left behind can seem impossible to handle. You try to simply make it through your day. Life has become a moment by moment experience. Some moments are good, some bad and some are downright horrible. I want you to know that MS is not your fault. Just as with a storm, you do the best you can to stay safe and weather the storm.

I like to think of rain this way: “Rain makes me feel less alone. All rain is, is a cloud falling apart, and pouring its shattered pieces down on top of you. It makes me feel good to know I’m not the only thing that falls apart. It makes me feel better to know other things in nature can shatter.” (Lone Alaskan Gypsy)

Today you may feel like you are wading your way through a storm. Clouds are hanging over head and mucking up your day. It’s dark and rainy and there’s nothing you can do about it. You may be awaiting test results or facing a family crisis, you may be drowning in financial difficulties or surrounded by loneliness, your heart may be breaking or your mind may be filled with worries and there’s nothing you can do about it…except…

You can decide that no matter the rain or darkness, you are going to have a good day. It really is that simple. Storms come and storms go. No storm lasts forever. The storm you are in, it will end and the sun will come out again. Some storms are longer than others, but they all come to an end…every one.

You get to choose whether you will laugh or cry, sing or sigh, bend or break. You also get the amazing opportunity to dance in the rain and stomp through the puddles that get left behind. No matter what you are facing, you don’t have to go through it alone. Share your umbrella with someone else.

I can guarantee you that if you take a moment to peak out from under your umbrella, you will see someone else walking in the same direction you are without an umbrella. Lift yours up a little bit higher and offer to hold it for them too. Two walking together in the rain is better than one. You could even turn it into a party and see if more people could fit. It won’t make the storm pass quicker, but it will make the time more enjoyable as you support one another.

If you just so happen to be one of the umbrella-less people right now, you don’t have to keep getting poured on. Look up. You will see umbrellas everywhere that are willing to share. Reach out and ask for help. Sometimes that can be the hardest thing in the world to do, but in the end it keeps you from getting soaked. Don’t be ashamed or embarrassed. It really is okay to ask for help. We all need each other.

Then after the storm has come and gone, get out there a jump in the puddles.

Change your struggles into something positive

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Multiple sclerosis just keeps happening to me and no amount of meds, sleep, CBD oil, meditation, chocolate or coffee seems to be able to stop it. I’ve even tried non-GMO, user friendly, vegan ones but no help. Don’t even get me started on using all the proven wives-tale wonders, conspiracy theory miracles and Dr. I-got-the-cure know it alls out there.

How can MS, something as simple as 2 letters, be so difficult? That’s beyond me. After all it’s just 2 letters in the alphabet. It’s not a sentence. But lately I would disagree. I’ve been put in solitary confinement, experienced sleep deprivation, dealt with torture by every ill acting nerve in my body and was even handed a restrictive diet of soft-foods-only due to a lack of muscle control. Ugh, what gives?!

That’s the crazy thing about MS. Whichever nerve it attacks is the cause of the problems for the body. If it attacks the legs… those are the ones hindered. If it attacks the eyes… yep, they have difficulties. If it attacks the bladder… troubles abound. Each person dealing with MS is different because with the trillions of nerves in the body it’s a crapshoot as to which one gets hit. Every day is a risky and unpredictable nerve venture inside the body.

True story, yesterday I wanted something cold to drink because it’s been getting hot here. I decided to make a smoothy because I had all the ingredients needed. Blending everything up makes it easier for my jaw muscles. For me, eating something as soft as a banana can actually be difficult.

I put everything in my blender to smash away, but once it made it look perfectly frapped I couldn’t twist the lid off. My hands were too weak. Weaker than my jaw was. It was so depressing that for a moment I leaned over the counter and a few tears fell. Why me? Ugh!

Then I took a deep breath, grabbed ahold of the lid and twisted for the upteenth time. Amazingly enough it came off. Thank goodness. I didn’t want a perfectly blended smoothy go bad.

I poured it into a glass, got comfortable in my chair and enjoyed a tasty drink. My jaw was really thankful everything was crushed up. It hit the spot…even with a few tears and several worn out muscles.

When I’m having a really bad day I remind myself that life is all in the choosing. Every day we are faced with decision. We may not be able to choose the struggle we are dealt, but we do get to choose how we will respond to it. BTW, tears are allowed.

In life, things happen around us and things happen to us, but how you choose to react to what’s going on is what really matters. Life is all about modifying, readjusting, and adapting in the struggle. Change your struggles into something positive. I know you can.

Taking the easy way

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I had a strange day the other day. I’ve been getting ready for a new living room set that I’m supper excited about. I purchased a blue sofa and love seat along with a beautiful glass top coffee table and matching end table. Most sofa sets are either grey, brown or beige so to find one that was a striking blue color called ink sold me on it. It’s a medium blue much like royal blue and it’s supper striking.

One of the pieces I’m excited to get is a motorized recliner which allows me to recline but also has a lift in the seat making it easier for me to get out of. It has a massage setting too and a way to plug my computer and phone in for charging. The greatest thing about it is that it’s made for someone over 6′ tall so it will be comfortable for me. No more having my feat hanging inches off the end of the foot rest.

I got a notice that the recliner had been delivered to my front door but when I looked, there was no box at my door. I let the company know that I didn’t received it so they issued a refund for me. I told them that I would be reordering the chair because my heart was set on having it.

Here’s the strange thing that happened. Yesterday someone came to my front door to tell me that they received a package that was mis-delivered to them with my name and address on it. They live streets away from me. The box says 1 on 2 for a recliner. Box 2 will arrive today. I’m excited. The company will have to make sense of the refund and the new order I’m wanting, but at least I won’t have to wait weeks for a chair to come. It’s already here. Somehow things worked out for me.

You know, I was thinking about all the things we use to help us live an easier life when a disability comes along making everything more complicated. A chair that helps lift you up…now that’s amazing to me. Funny thing is many items aren’t designed for the disabled. I’m always looking for items that help  make life easier. Not because I’m lazy but because everyone needs help even if they don’t say or think they do.

Am I trying to take the easy way out by using a chair that lifts me up to help me stand or transfer to my wheelchair? Since I can’t just stand up like a healthy person, the help saves me time, energy and at lots of tears, so yeah… I’m taking the easy way. Live in my body and let me know if it’s really the easy way. It’s actually quite complicated… never easy.

The way I see it is the more options I have at helping me to do something means hope and I need lots of hope living with MS. Having hope is having an expectation that something good will happen in the future or that something bad won’t happen. It won’t solve all of society’s problems but will bring you some added sunshine in the darkness.

I see a few rays of sunshine lighting you your day today. Don’t get too discouraged when you look around. There’s always hope. I’m believing for the best for your life today.

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

 

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.