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When opinions become facts

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Knowledge can be powerful, but you can’t misinterpret a tiny glimpse of information about multiple sclerosis and then declare to the world that you know all about it… both the cause and a cure. Many people are even pushing their own products as support for their theories. It’s all a scam for get rich quackery. After all who else can make money today but the fakers and the takers.

Big pharma has been a great example. Push a product with no actual facts as a cure and people will buy it by the droves. No proof needed. Just spout off a few unapproved statistics and you’re gold… rolling in it that is.

To those online experts that talk about MS as if it’s cured I say…I wish you could live in my body for a day. You would quickly give up your degree in neurology. Oh, wait, you didn’t go to medical school. You got all your schooling from Uncle Fakealot and Dr Google. In that case, you need to fire Uncle Fakealot and even more importantly give up your university degree. 9 times out of 10 Dr. Google is WRONG.

But really, the internet isn’t what’s wrong. It’s people. We live in this weird period of time where people try to solve all of the world’s problems with bite-sized theories, unproven statistics and wacky medical solutions. Gone are the days of real knowledge. Opinions have become truth and everyone is an expert.

No one is wrong in how they go about living with MS. There are always things we could do better and new things to learn, but NEVER should we act as if we are the guru of all knowledge and wisdom regarding something as unknowable as MS and the human body, because we aren’t. Even doctors aren’t, they are all just practicing. That’s why their business is called a practice.

Don’t let anyone make you feel bad because they chose a different path than you. You be you and do what you know you need to do for yourself. You know your body better because you are the one actually living in it. Be unique, be crazy, make a mess, try new things, make mistakes, and even succeed…but most of all, hang onto the smiles around you and enjoy living.

There’s only one you and only one today, but there is a potential for lots of smiles to help you through this mess called life. Choose to find the smiles.

I’m a nobody

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I’m a nobody. I’m just a gal with a laptop, a blog, an X account and a Facebook account. Nothing special.

I was diagnosed with multiple sclerosis in 2013 and went about looking for information about MS, the drugs used to help, and healthcare in general. Some of the things I learned were great, some not so much, but all of it beneficial.

One thing that truly annoyed me was when I would visit support groups at that time I always left feeling worse than when I had arrived. Most groups were just woe-is-me sessions and left me with an icky heaviness inside. So my remedy was to never go back to them.

Can’t people talk about MS and still laugh and enjoy themselves without all the woe-is-me attitudes? I found few resources for positive encouragement at that time. A place to laugh, to cry, to share, to just feel normal in the midst of a life of chaos. That’s when I decided to start something myself, thus the birth of Positive Living with MS. I don’t make any money posting things online I just gain great new connections with people all around the world and learn a lot of cool things from them.

In addition to that…

I will use whatever reach I have to talk about multiple sclerosis: the good, the bad and the ugly. Some with humor, some with tears, but all with a matter-of-fact straight talk. I don’t sugar coat things to make others feel comfortable about the topic I’m discussing. I just tell it like it is from my perspective. If that’s not something you like, then I hope you find some other blog or page that helps you out better than mine. No feelings hurt here.

I love making my humorous meme’s and sharing my daily nonsense posts on social media. Some are received well, some with groans and others with huh? moments. But at least they get people talking and thinking. And on my blog I try to post once a week to talk about my own experiences with MS. I’m glad to be able to share my journey with you. One of my favorite posts is MS Facts. Beware… there’s humor in there to talk about all the symptoms we deal with.

If you want to help me pay the bill to cover my hosting and blog costs you can donate online here:

DONATE HERE >

Any financial help is always a welcomed blessing for me as I no longer work due to the progression of MS in my body. I have trouble cognitively as well as with uncontrollable tremors and weakness.

I only have my social security benefits to cover my living costs and squeeze out all I can to pay for the website. I used to be a web developer and graphic designer so my skills came in handy to build the site and keep it running.

Each year around this time I let everyone know that in a few months the bill will be due. Any amount given will be used to cover the costs. This year the total is $600. The price went up about $50 from last year, but I’m determine to raise enough to cover all the costs with your help. Thank you in advance for your support. And happy thanksgiving to you as well.

———-

I’m Nobody! Who are you?
Are you – Nobody – too?
Then there’s a pair of us!
Don’t tell! they’d advertise – you know!

How dreary – to be – Somebody!
How public – like a Frog –
To tell one’s name – the livelong June –
To an admiring Bog!
– Emily Dickinson

 

Living stress less with MS

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I can sit and watch it rain for hours. There’s something therapeutic about it. The steady rhythm and the sound of flowing water is soothing. As a kid I would watch the drops of water on a small section of the car windows and would try to find the fastest raindrop as we drove down the road. I would challenge my brothers and sister to pick one and we would make it a contest. Which drop would move fastest to a specific location. It made traveling fun.

I also like watching fish swimming around in a tank, in a lake or in a bowl. There have been studies on the health benefits of fish watching. I’m not sure if I can say the same for raindrop chasing, but I would imagine it’s the same. Fish watching has been found to relieve stress and anxiety, calm the mind, lower blood pressure, help to reduce the effects of chronic pain, and even enhance a person’s ability to focus…all things that someone living with multiple sclerosis would greatly benefit from.

If your day today is filled with a long list of to-do’s, demands from your boss, needs from your family, piles of work that simply can’t be put off one more day, take a little bit of time to watch some fish. If you don’t have your own fish tank at home, load a video from the internet of a fish tank or even of rain falling that includes soothing sounds.

I actually had a Betta fish named Blueberry once that had an amazing personality. He was a beautiful blue color with a few red stripes in the fins. I loved watching him fan his fins, play hide-n-seek in his tiny cave and swim around the tank as he proudly displayed his colors. Even watching him eat was entertaining. Sometimes he would spit his food out and then go chasing after it to gobble it up. He always gave me a giggle.

Maybe instead of fish, you are more of a dog or cat person. There’s something just as calming about them cuddling up with you as you scratch between their ears and rub their belly. It could be that you prefer caring for horses or maybe even birds, reptiles, or hamsters. It seems all animals have the potential of making great companions, being amazing “friends” and helping in relieving stress.

I would have a zoo if I had the room for it. Does that mean I live a stress free life all the time? No, but it does make life much more enjoyable and entertaining…that’s for sure. And who does’t need some entertainment from time to time is this crazy mixed up world?

This morning, my entertainment was watching an ant trying to lug a broken cracker on top of its head. That was my view as I drank my morning coffee. I’ve even already laughed a few times in the process. Each time the cracker would slip off its head and he would attempt to pick it up again. It seemed more like watching an I Love Lucy episode. Laughter is therapeutic anyway so I’ve already had a good day.

Not being able to communicate can be frustrating

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I lose words more than I lose my car keys…and they’re harder to find too. I think conversations with me are more like a game of charades than actual conversations. I’m sure it frustrates those I’m talking too as they try guessing the word I’m fumbling around in search of. It can become quite comical too as I point, make hand motions and slap my leg in an attempt to help the process along.

ME: Can you hand me…? [as I point across the room]

FRIEND: Uhhh…a pen? A glass of water?

ME: No [as I tap my thumb to my finger in a pinching motion unable to even describe what I’m trying to say. I sit in silence making hand gestures in hopes it resonates with her.]

FRIEND: Nail clippers? Scissors? Paperclip?

Minutes pass and all I’m trying to say is “Can you hand me the TV remote?” Simple, right?

Not being able to communicate can be frustrating. I do much better in writing. There’s nothing worse than trying to get your point across or share a meaningful moment with someone while losing the thought you were trying to share. Sometimes my attempt in describing a word takes so long that I actually forget the thought I had in the first place. It takes skill to keep me on topic. A skill I’m not always very good at.

Yesterday, I could tell my words were getting stuck and mixed up more than usual. When that happens, I have a tendency to not speak as much. I just don’t want to frustrate people… or myself.

You know how people say to pick and choose the arguments you get in. Well, I pick and choose each conversation I have as well. So if I choose to share a thought with you, it’s going to mean something because I chose to break out of my silence in order to chance a good flow of words.

I have noticed that the more frustrated I get, the more my words get stuck. The trick for me is to stay calm and not allow my mind to wander. That may mean I talk slower, talk more direct, or use shorter sentences. But that’s just my way of coping and working with my disability. It keeps me from getting overwhelmed. I say what I have to say and move on.

When you find yourself getting lost in a world of words, know that it’s okay. You’re not going crazy and you definitely aren’t alone. There’s an entire population of us hand gesture, charade playing, word searching MSers out there. Take a deep breath and have some fun as you turn your conversations into a game of Guess What I’m Saying. Laughing always makes things better.

To Meme or not to Meme? That’s the question!

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I’ve put together a collection of my most wonderfully random and entertaining images and memes to keep in one convenient place. It’s a work in progress but hopefully it gives you a laugh and something to think about along with something to share with others to raise multiple sclerosis awareness.

I hope to add at least 2 to 3 images a week so makes sure to come back often. You can find the memes easily from the websites by following the link labeled “MS memes” in the top menu bar at positivelivingwithms.com.

When I first started Positive Living with MS I came across people offended by my sarcastic yet pointedly accurate MS images on topics that were a bit hards to talk about. As time passed the narrow-minded, prudish followers went away. I still meet people that don’t like my use of humor to talk about my life with MS. I find that in the humor there are some heavy subjects that will bring you to tears… but it’s all a part of a life with MS that needs to have more awareness.

As I’ve said many times, it’s better to laugh than cry about what we deal with. It makes the days brighter, the load lighter and the pain easier to handle, both emotional and physical. So laugh and don’t feel bad for it. It does a body good.

MS Facts Memes

Humor Memes

Inspirational Memes

MS Symptom Memes

 

20 things I love about multiple sclerosis

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  1. Vertigo – I get to pretend that I am on a Trans-Atlantic sea cruise every day… plus I like wearing Hawaiian shirts.
  2. Disabling Fatigue – I get to take naps and snuggle with my pillow.
  3. Insomnia – I get to catch up on all the reruns of the shows I missed while taking my naps… life can stick me with a crippling disease but I won’t miss a thing.
  4. Heat Intolerance – I get to drink all the Chocolate Ice Cream Shakes I want.
  5. Nausea and Vomiting – I can drink all the Chocolate Ice Cream Shakes I want with no weight gain.
  6. Delayed Verbal Processing – Nothing stops me from putting my foot in my mouth faster than being unable to think of what I was just about to say… several times in a row.
  7. Cognitive Dysfunction – When I put my cell phone in the refrigerator, my car keys in the microwave, and the milk in the dishwasher I am always pleasantly surprised when I find them.
  8. Short-term Memory Loss – I get to walk into the same room over and over several times until I remember why I went in there to begin with… it is a great excuse to just go make another Chocolate Ice Cream Shake.
  9. Speech Ataxia – I never know what funky new words I may create when I talk. I believe this is how “jive talk” started.
  10. Paraesthesia – It reminds me of when I was 10 years old at summer camp when I stuffed my socks full of Pop Rocks on a dare.
  11. Footdrop – It makes it really easy to plant even rows of seeds in my garden.
  12. Diplopia – Getting to see my Chocolate Ice Cream Shake twice at the same time is awesome.
  13. Optic Neuritis – The ugly people on my High Def TV are finally blurry! Woo Hoo!!!!
  14. Dysmetria – I get to figure out brand new innovative ways to do simple things like cutting vegetables or frying bacon… or putting on pants while frying bacon.
  15. Muscle Paresis – I will no longer feel obligated to help friends if they ever need to move a couch up a flight of stairs or bury a body in the backyard.
  16. Muscle Spasticity – Gym membership? Ha! Look at these quads!
  17. Bladder Spasticity – I will always know where all the rest rooms are located.
  18. Dystonia – I was never a fan of typing words correctly anyway… just ask Siri on my iPhone.
  19. Clumsiness – I used to just be good to look at but now I am much more fun to watch.
  20. I am stuck in a motorized wheel chair – I have another reason to keep working on designing the first ever “low-rider” turbo charged Rascal Scooter for street racing with death ray for use for the idiots who park in handicapped spots.

All aboard the multiple sclerosis express

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Ladies and gentlemen, this is the non-stop flight to a life with multiple sclerosis. On behalf of the Captain and the entire crew, welcome aboard.

In preparation for takeoff, please ensure all negative attitudes are properly stowed in an overhead bin. Please take your seat and fasten your seat belt.

At this time, we request that all stress, fear and worry be turned off for the duration of the flight, as these items might interfere with the central nervous system and communication processes of this aircraft. We request that all canes, braces, walkers and wheelchairs be secured until we have reached a stable altitude free from turbulence, wobbles and unsteady movements. We will notify you when it is safe to use such devices.

We remind you that this is a non-sleeping flight. Sleeping is prohibited, but we do have endless TV shows, movies and documentaries available for your viewing pleasure.

There are several emergency bathrooms on this aircraft. Please take a few moments now to locate your nearest bathroom. In some cases, your nearest bathroom might not be close enough. If you need to go immediately, I suggest you move quickly to ensure no accidents happen.

Blood tests and lesions are always being monitored. In the event of a relapse, an MRI machine will automatically appear in front of you. To start the scans, your head will be secured to a table and you will be inserted into a tight, claustrophobic tube. Although the machine is loud, you will be allowed music of your choosing to help drown out the sounds. Keep perfectly still without sneezing, scratching your nose or coughing until a uniformed attendant advises you it is all over.

In the event of an emergency, IV steroids are available and will be administered as needed. Be cautious of the metallic taste that will occur during this process. Sucking on hard candy helps so be sure to have a few in your baggage.

Meals will be supplied based on your needs. Dietary restrictions are adhered to. If you require texture friendly food we have a selection of soft foods that makes challenging meals easier to manage. Getting pre-portioned meals that you can pick out allows you to tailor your selection as needed.

We will hit turbulence along the way, but rest assured it won’t last. We will eventually pull above the storms and enter sunny skies. I expect good attitudes for our trip.

If you have any questions about our flight today, please don’t hesitate to ask one of our specialists. Thank you for flying the Multiple Sclerosis Express.

I seem to be allergic to multiple sclerosis

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The immune system is made up of a complex and vital network of cells and organs that are created to protect the body from infection. Their entire purpose is to defend the body and keep bacteria, viruses and fungi out, and to destroy any infectious microorganisms that try to invade the body.

Growing up I never had an allergic reaction to anything. Food, bug bites, hot or cold weather, animals, dust mites, pollen, or drugs. The only thing I was allergic to was poison oak. It always seemed to spread by me just looking at it. I didn’t have to actually touch it… or in my childs mind I didn’t. Once I had gotten such a bad case that spread all over my face even causing my eyes to swell shut for a few days. After a visit to the doctor, some meds and lots of calamine lotion, all was well.

Since multiple sclerosis has taken up residence in my body, I have discovered that certain foods cause me to have increased symptoms like expanded weakness, spreading of numbness beyond the normal residual symptom from my initial MS troubles years ago, visual disturbances that have a tendency to keep me from being able to properly read emails without double vision, dizziness that meclizine doesn’t seem to help with. For me, over time, I have discovered those foods and know which ones to avoid. Each person has to find their own foods to avoid. It will always be different person to person.

I have also discovered my difficulties in balancing. I fall over trying to sit up. I can no longer do as my mom always said… ‘sit up straight and keep your elbows off the table.’ I simply can’t seem to do it unaided. I have cognitive problems too unlike anything I had before. I used to be able to read an in depth computer manual and be able to code computer programs based on what I had read without difficulty. Now I can’t put a line of code down without constantly looking at every cheatsheet available.

It just seems like every new symptom shows up out of nowhere and has a tendency to hang around for a long, long time… sometimes forever. I have also discovered certain drugs now give me an allergic reaction and I have to be watchful of them. My body just doesn’t seem to want to cooperate with my own body.

One thing I told the doctor is that I found I was allergic to ice packs. They always turn my skin red…(grin). I can’t get through a summer without them. They help me survive the heat. I’m also allergic to a lack of humor. There’s not enough smiles, giggles and laughter in the world of the chronically ill. You do know that it’s okay to laugh, don’t you?!

Over the years I have found that I need to take things slow and listen more closely to my body. It always seems to talk louder than I wish it would but thankfully it speaks up. Sometimes it’s the only reason I feel as good as I do. My body isn’t perfect. I fall down too much, pain visits way too often, confusion happens and brain fog seems to have taken up permanent residency. And although I wish life was different, it’s still mine and I refuse to give up.

You can’t give up on your life either. MS makes things complicated but not impossible. Impossible says it all… I’m possible.

Just like you. You’re possible too.

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