Butterflies

Butterflies...beautiful, elegant, colorful, and FRAGILE!!
No two varieties are exactly alike in their flight patterns - some float high, some low; short distance or long distance; straight or circular. Each taking their own path at their own speed.
No butterfly judges another for not doing things the "right way". They are way too busy making sure their own path is correct for them!
We could learn from butterflies!
No two people are alike...
Some fly a different pattern...
All are beautiful...
All are special...
All are fragile...
Treat each other - and yourself - accordingly

I'm just sayin' 💖

Wednesday Wisdom

“Love people, not things. Use things, not people.”
                            — Spencer W. Kimball

Three Lifelines

As I sat reading and pondering on a rainey Sunday morning, this came...

When dealing with "stuff", you can do 1 of these things:

1) SEEK THE JOY, HAPPINESS & BLESSINGS IN YOUR LIFE
this is a strengthening activity; it is one that can take you out of the negative place life stuff offers; it is nearly impossible to focus on stressors when you seek joy, happiness, blessings...
It may be something as simple as the sun is shining or the kitchen is clean, but SEEK;

2) CLING TO GOSPEL TRUTHS
nothing mortality can throw at you is greater than Jesus Christ, His Atonement, and His Love for you!! Mortality is supposed to be hard so we can learn, grow, and be better. This can be so very tough to do when the adversary is poking at you, telling you all his negative naggy stuff, but CLING;

3) BUNKER DOWN
sometimes, no matter how hard we try #s 1 & 2, the realities of mortality hang on and life continues to be "lifey" and we do not have the energy nor focus needed to deal with it all...there are times when it's best to "shelter" where you are, ride out the storm, and wait...be patient...change will come! It always does! Until then, BUNKER DOWN.

I'm just sayin' 😄

Speech and MS pt. 3

On the flipside, there are times where I feel like I am forming thoughts into sentences in my head just fine, but I just can’t physically say them. I can’t adequately articulate what is right there; I know what I'm saying but what I hear my voice say is somehow "off". This feels like a muscle issue to me.

I would say the best example of where this problem first started for me was a couple years ago, when I started noticing that I had a lisp, and then had a hard time saying certain sounds. It was like my tongue was just super out of shape and could no longer perform the verbal acrobats needed to pronounce certain words, especially words with multiple syllables or several words together with similar sounds. As a result of my tongue “being out of shape,” it would just trip over itself when trying to pronounce the most basic of words. Even reading out loud things I've read a dozen times now can sound like jibberish.

So, I simply avoid trying to form words that I know I will have trouble with; but, now, I am noticing that I will start to slur even the most basic words and syllables causing me to sound almost drunk. This is what really gets me, because it feels like someone clamped something to my tongue preventing me from being able to enunciate each syllable nice and clearly. It’s SO frustrating!

Sometimes this makes me feel “trapped,” like I know what I want to say in my head, but I just can’t say it. Others cannot imagine how emotionally devastating this all is for me. Sometimes feeling like I can’t form coherent speech makes me want to just break down. I'm really am a well-educated woman; I just do not sound like one anymore.

But, I am trying to stay positive, remembering that, at least for now, I can speak...even if it feels to me as if I cannot speak very well.

I'm just sayin' 😶

Speech and MS pt. 2

One problem for me is getting my thoughts out of my head when trying to verbally speak with someone. It feels like a cognitive thing.

Halfway through a sentence, it’s like I’ll forget where I am going with a thought, as well as where I just came from. When things get really bad, it’s like I have an idea in my head that isn’t even made up of words. (and then i get a bit hyper & stressed...not a pretty sight).

I don’t know how to explain it; I imagine in these moments that this must be how people used to think before they had a formal language, or how animals form thoughts without the concept of a word.

What was going through my cat’s head when she was staring off into the distance? Does thought even exist in the absence of language? Of course it does, but it’s really hard to imagine without thinking of words.

But I would say that these moments feel pretty close to whatever that must be like because I can only describe what’s going through my head as “raw thoughts and ideas.” I will have to pause and just think and think until I figure out how to turn those ideas into words that others can understand.

It all makes for very awkward social experiences!! I'm either silent or hyper. What must others think...
"what an idiot" or "chill out, lady".  Leads to a lot of miscommunication and misunderstandings.

Yet another isolating factor to the MonSter.

I never had to do anything like that before; for most my life, I didn’t seem to say “umm” very much because it never felt like my brain had to buffer… but now, on a good day, it’s like I am trying to watch a YouTube video on dial-up internet; every 2 seconds the video pauses and displays that little spinning wheel while it buffers and tries to catch up.

This is why I prefer to write instead of speak because when I am writing, I can stop in the middle of a sentence and spend time on deciding what the best word for the job is – which you can’t typically do in the middle of an actual conversation.

Speech and MS pt. 1

It’s pretty well-known that Multiple Sclerosis (MS) can affect mobility, but it can also, often, affect your speech. I used to enjoy public speaking/teaching. I have often read outloud to groups, children, family.  Not any more.

I have been noticing over the last couple of years or so that my ability to speak isn’t that great. This seems, in part, to have to do with the control of the muscles in my mouth & jaw (or lack thereof).  This is the result of the MS itself and muscle & nerve damage from an MS related staph infection (long story). The rest stems from my cognitive ability to actually turn what I want to say into a coherent sentence.

Now, I am in no way, shape, or form an expert on speech issues in MS.  In fact, I would say that for the most part I have been avoiding even looking into it because I didn’t want to admit to myself that this was becoming an issue. So when reading this post, just keep in mind that I am just sharing what I have been noticing in MYSELF, and how it feels to me because I can no longer avoid the fact that I do NOT speak smoothly any longer.

It’s becoming really frustrating, and I am not sure what to do or what I even can do, but it’s making me want to talk less and less, which is probably not a great solution to this problem. I am guessing the whole “if you don’t use it you lose it” thing applies here.

"Not feeling well" MS version pt. 4

Just for the record....

Most of the time when I say “I am not feeling well,” it is because I have something on top of the MS.

When I say I'm "just fine" it usually means I'm MY normal...struggling but doable!

If I say I'm "not so great" it just means it’s a bad day for my MS. For me, maybe it was just the stress from yesterday, a lack of sleep, or the heat of the day that is causing me to not feel well. It may mean I'm dealing with new or unusual symptoms which I'm stressing about. In any case, that means I am extremely fatigued (more so than usual), dizzy, unable to see clearly, in pain, cannot think straight, and/or too weak to want to do anything but lie down.

I know...everyone gets sick and rundown; but you have to realize, with MS it really is different.

Yes, I am ALWAYS tired; I battle fatigue every single day, but like all my other symptoms, some days are worse than others.

Simply put, it’s no different than pain. Maybe you just got a paper cut? Or maybe you broke your arm? Both “hurt” but one hurts objectively worse.

So when I say, “I don’t feel well” and then you say, “you never feel well” (besides being rude and unkind) you are not understanding that there are varying levels of severity of the symptoms that I live with, and despite me looking like nothing is wrong, these symptoms...though they were not too bad yesterday...or an hour ago...might just be killing me right now.

So...sorry if how I feel is so complicated. Sorry if it's inconvenient for you. Sorry if plans have to change, or if I seem wimpy and whiney to you.

Seriously...I'm doing my best every day!

I'm just sayin' 😷

"Not feeling well" MS version pt. 3

Before MS came into my life, I actually started to feel like I could walk around a society, work, church (were i usually worked with children) without a fear during some sort of outbreak of a deadly virus and I would walk away just fine because I never seemed to get sick anymore. As stupid as it may seem, I felt somewhat untouchable when it came to getting sick.

Maybe that had a little to do with my age and me trying to look on the bright side of life, but that illusion soon ended because, well, after MS, that all changed.

A simple cold now felt like my worst flu; it was like MS, had exposed some sort of Achilles heel in my immune system that when touched by some kind of "bug" would completely bring me down.

On top of that, when this happens, my MS flares up adding sometimes painful neurological symptoms to a "little cold".

Now, I have to be really careful not to get sick because when I do it literally hits me hard because I don’t have as strong an immune system as I once did. So, yup, I stay home alot...stay away from big crowds...especially during cold/flu season.

So when I say “I am not feeling well” because of a cold or something, I am not just being a baby about it because with my weakened immune system, it does not take much to steal all the strength out of me, drain what little energy I have, and totally knock me down, causing my body to be almost “useless” for however long it takes to get better regarding both the sickness and my flare of MS symptoms.

"Not feeling well" MS version pt. 2

First, I’ll tell you a bit about my own experience with simply “getting sick”.

Throughout my childhood, I can remember getting sick every year at about the same time, as though I were on some sort of annual schedule. It was so routine; everyone else in school has a cold? I get a cold. It always seemed to hit me during the holidays...I woke up one Christmas with mumps...so a lot of my childhood memories of “the most wonderful time of the year” have to do with me lying in bed feeling lousy.

As I grew a little older, that all calmed down a bit, but then in high school I got pneumonia really bad, and that was just a terrible experience.

And then after that...I almost never got sick. The college student, working, single-mom years...healthy! Then my immune system “woke up” and went into overdrive, indiscriminately destroying everything in its path, be it friend or foe.

"Not feeling well" MS version pt. 1

Every so often everyone has one of those days where they just don’t feel well. The start of a cold? The flu? Just working too hard on too little sleep?

We all know what that feels like, but when someone with Multiple Sclerosis (MS) says that they are not feeling well, there is a pretty good chance that they mean something completely different, and more often than not, people just don’t get it. They don’t get how me not feeling well with MS is not the same as what they think “not feeling well” means.

On one hand, yes, people with MS still get sick and the exhaustion of life still gets us too, but even just those mundane ailments can knock us down for the count as they tend to hit us with a little more force, causing a simple cold to be a little more exciting than we would like.

On the other hand, “I don’t feel well” could have absolutely nothing to do with the things you might associate with “someone not feeling well” because there are obviously things that an autoimmune disease of the central nervous system can cause a person to feel that someone who is otherwise healthy may never experience in their life. So let me try to explain to you what I mean when I say, “I don’t feel well”.

Wednesday Wisdom Tribute

"Don't minimize others' tragedy with trite words."
     ---Stephan Robinson

I found out this week that this wise man (Parable of the Bicycle & Believing Christ) passed Home in June.

True wisdom remains when we are no longer here. Thank you, Bro. Robinson, for sharing your insight, your talents, your testimony 😇

Wednesday Wisdom

"Holiness is not only about the Spirit: it is also the feet that take us to our brothers and sisters, and the hands that allow us to help them."
                  
                                     --- Pope Francis