Expressive constraints or restraints or constrictions or alas limitations in verbalization of communication?

I have been considered by myself and others to be verbally challenged at best and at worst, pretty much a functional illiterate but I digress…
You see I don’t let any of my challenges in this particular literary world stop me, because I really do so love to discuss weighty verbiage and overused expressions on this planet that we all live on, and aha, so why not; I will…
“That’s what I’m talking about!”
“You know what I’m saying?”
“Awesome!”
“Absolutely.”
“These people…”
“Huh?”
“Now.”
“Sure.”
“I totally understand.”
Come on folks I showed you mine; now you show me yours, ha!
Which do, if any, repetitive clusters of words get to you?

In the processing of tonight’s writings we hit a short glitch with a staccato miniature power outage, one of those slight surges that we are all thankful for our surge protectors doing their jobs by preventing any real damage, huh?
Oops that’s me huh-ing all over the place, not unlike a Canadian’s eh, eh?
Where ever did I acquire that annoying expression is beyond me? Gosh, my parents never ever would say anything as monosyllabic as that. Oh that’s right anyone who knew them knew they were far more articulate than that. Well to be frank I do recall a few no’s in my teen years, but not many!
Oddly enough though most ways or constraints of forms of speech are developed in the earliest days of our lives
When we as children hear speech patterns and many people will influence that part of our early development mostly of course our parents will be our first. And your boyfriend or girlfriend according to how you roll will be your second…bud dump bump…
Soon our friends and their families and then teachers can be blamed for our syntaxes, now you can see where I am going with this… Good!
Because, to be honest, I was bluffing and I have no idea what I meant or even where this may be heading, did you? Gotcha!
No, ‘seriously folks’, oh no this could be included in the above aforementioned annoyances as well as ‘to be honest’, damn I’m good! LOL!
‘You see’, another one, ‘I’m on a roll’, now isn’t this fun?
NO, I hear you!
Well, actually I don’t but you think that I do, huh?
Sadly, ‘I do believe’, oh no another one!
Listen chillin and you will hear redundancy gone wild, oh is spring break over?
Kidding with another ridiculous one…
Susanna, if you are reading this, this evening I sure do hope this is just a bit of the residual affects of all those steroids and all I want to know is does anyone know if when I may be allowed to re-imbibe in a glass a wine? The point is this was my third of my IV infusions and my second step downs and this is the first time I had a silly reaction adding into that nasty diabetic one of all the rest, but that one is thankfully all gone.
I finished the last step down pill last night and wouldn’t mind ‘a bit of the grape’?
There I go again; I break myself up, ha!
Any-who, please get back to me on anyone of those questions, ah I might beat you to it and look it up on this techno marvel that I so do love. ‘Thanks anyway.’
On the tails of all this what did she say moment let me be the first to wish you all a very happy good night and to ask you kindly to count your blessings and share your overages and take care, be well and happy and try for peace with you and yours and we will too!
And next time for my own selfish sake please be here or be square, ya hear?

Death, Dream, Ducks...

Have you ever awaken in a nasty cold sweat?
I had the weirdest dream ever…
Do you know in those sci-fi movies when they stop the people meandering around in a normal day’s setting of behavior, let’s say for argument’s sake a quiet summer’s day in the center of a town with a Gazebo type bandstand in the middle, yes one of those all American Fourth of July’s; everyone’s concept of how things looked in the 1950’s and then without warning they all, the people, stop in their tracks and become as stiff as statutes? Not unlike, The Day the Earth Stood Still, circa 1951, although they remade it in 2008, which the first comes to mind, the original is more accurate in what I saw last night, but mine was just a wee bit more different since they were all under water and so was I…
The entire stop action moment appeared to be like I was drowning but unable to move up or down and I was about to call out but I saw everyone else and realized that it would be for naught and so I jerked myself awake for fear if I did not I would be dead, yea, that’s right, dead, how odd, and frightening is that?

And so I lowered the air-conditioning thermostat again and this is not a very good thing since I never ever turn on the light since my concern is with waking Hubby up. You see, it’s in the hallway and instead of closing the bedroom door to see what I am doing I just wait and listen for the air to turn on again. One morning I awoke to it set on 64 degrees Fahrenheit, didn’t know it could go down that low, huh?
My reasoning for lowering the air and to cooling me is that it is supposed to be more healthful and enable MS people to sleep better; actually live better, but we all know in Florida that’s why we are here for its warmth... how ironic. This is truly what makes us stronger, temperature dilemmas? Well, when all is said and done it will come down to that I bet? (Anyone hear of Global Warming? I rest my case.)

Any-who, after all was done to my advantage it turns out my bedtime would not continue no matter how hard I tried and so at approximately five thirty A.M. I got out of bed and into this room to start my day… in front of my old buddy here.
I had time to absorb what had happened to me and my conclusion was that it truly did throw me, for a while, during that experience, I did think if I did not leave the bed I would die in my sleep, quite unnerving, huh?
I would say most definitely so!

Now, I am not totally crazy just yet, which I do know is debatable, but go with me here anyway, OK? And what I did discover on a short snap of research is that steroids have been notorious for causing all sorts of mental contortions and even hallucinations and so I finally gave in to that as my ghastly causal effect of night terror.
As we all know that many medications legal and non legal can alter brain waves and it’s not like my first time too.
Oh no, I never ever took illicit drugs even back in the 1960’s, which I think some may not believe but that is very true. You can ask Hubby he was there too…
I was given pain injections for a back injury in 1983 in a hospital setting that caused that horrendous effect induced by medical people, nurses while I was in traction in a well renowned NJ hospital, scary!
The so-called needed meds caused hallucinations and also the same two medications caused me to be coded, yep just like in your favorite TV medical show where they were zapping me!
Those two meds have been on my allergy list ever since then.

It took me a year and half after that to even take a non-aspirin pain reliever; it had scared the heck out of me and Hubby and our sons who witnessed that strange behavior, for them it was traumatic to this day for that I am sure!

And so I have been very nervous to say the least with the volume of medications that both Hubby and I have been given, and I suppose that alone could have caught up with me in my dreams/nightmares of last night… who knows?

Oh I had ducks in my title too and yep they were NOT in my dream or a hallucination they were those parasitic not so lovely looking breed that is much better eaten then to view, no cute little yellow duckies here, they were Moscovy ducks, molted and lumpy bumpy rather ugly. I suppose not unlike what I have evolved into, hmmm, interesting when we can relate what we perceive as beauty or not beauty to a human form in an animal, huh? They were two to be exact that decided to take a morning swim in our pool, yuck and quite odd since we live on a saltwater canal, so why?

I suppose that was unkind of me but I do have a tendency to call as I see ‘em when I can that is...PS those two waterfowl did not want to leave either Skipper tried his darnedest to wrangle them from the pool but they ducked under, excuse the redundant rightfully so term, and swam beneath the water to all our dismays. Hubby even tried to use the skimmer net pole as a Shepard’s crook would be used too but alas getting Skipper inside and waiting patiently finally was all we could do, oh well… sometimes doing nothing is better than something, huh?

On that note of resignation on duck rearing practices let me be the first to ask you to take care, be well and happy and may peace come to you and yours and kindly share all those blessings and we will too!

And next time for my own selfish sake please be here or be square, ya hear?

I'm MS'd out, how about you?

This evening I felt that I should move on…
Sure it has been a rough day, but patience has never ever been my strong-sooth.
We all know this to be a truism in just the mere fact in knowing that steroids take their time to work, as research tells us it can be anywhere from three months to a year. I guess I better find something else to keep me busy for as long as my attention will hold, ha what a joke.
Everyone here knows that my attention span is shorter than most hyper active kids!
But thankfully when in business I was a multi-tasker before this bum gig took hold which I am still adjusting to, and that is a plus in my many management and entrepreneur positions that I did have over a thirty-two year time span, while raising our darling sons.
Even with my volunteer years which did overlap, on and off for forty years, I had to do many things at the same time, from fund raising to being co-president of a support group and teaching a class here and there as well as being a board member and let’s not forget advocacy, on and off line. Most of my readership already knows all this, sorry for being so redundant, but that’s me… consistently repetitive!

Any-who, the point is for tonight that I am still not any better but I do have hopes that time, will be the answer, since I got nothing else to count on, and one can only try to outlive the waiting period, bud dump bum! LOL!

Hell, is not probably much different than this… sorry, just one more thing before I really do move on to something more interesting to the masses, OK?
This banding thing and the numbies that I have been getting in amplification are going to go away, right? (PS all explained in detail last night) I should know this since I have had them for years but not so intensely…
Spasms are rampant too, only more so than usual and my eyes are truly doing there part to create havoc not to mention my left ear clogging up like a trouper to get into the act too! I suppose like I have said before feeling is better than not feeling, even pain.
And anyone with MS knows why I said that, since we have all gotten up when our leg acted as if it wasn’t there and we fell, or reached out for something when we lost our gasp since we couldn’t feel the item in our hand.
And so yes, I do welcome the pain with the knowledge that I can still feel, even if it’s not good.

And so as I promised here is me moving on…
A Facebook friend of ours was on The View today as a guest, Robert Scali, yes the ABC all women discussion show with hot topics and guests to boot. He had been involved in a discussion on men having plastic surgery done, he is a former Green Beret and so although he did have his chin done he said his buddies from Fort Bragg did not put him down or tease him in anyway for his choice to better his appearance. He had tried the workout regime etc, and nothing had helped change the chin that I felt in both pictures was not that bad looking, but we only see what we see when it comes to ourselves, hmm? He is a forty-nine year old divorced man who might very well be re-entering the dating market and it did sound a little bit like Barbara Walters perhaps was willing to play matchmaker for him, hmm? Not too bad an idea she does know a wide variety of people in every walk of life… PS he resides in the Boston area for any of you gals that might have seen him on-air, very cute! As a married older lady I do try to do my part to make others that way too! LOL!
All in all the two men there who were willing to come-out in this realm of full disclosure I believe was quite brave, since unfortunately like too many other things this too has been considered a gender oriented decision and therefore rather bias!

On that note of trying to clean up the singles world, one person at a time and so please take care, be well and happy, and may peace come to you and yours and please share those blessings and we will too!

And next time for my own selfish sake please be here or be square, ya hear?
Thanks folks.

Sensitize?

Tonight, I am going to try something quite different.
I have been considering how to explain what some Multiple Sclerosis persons may be going through daily, although each one of us that have MS have their own unique perspective on how we handle the symptoms. And their level of how they feel is totally different from one to the other, OK, got that?

Optic neuritis is misunderstood as being not that serious and so I will start with that.

The one on the left is what I see with my right eye since having optic neuritis last summer that the infusions still have not helped. Not bad you say, get a corrective lens like the rest of us do with nearsightedness and all will be well or eye surgery like they have for cataracts or now Glaucoma and it should be just okey dokey! This is neurological and the optic nerve goes to the brain not within the eye itself. And so no, not yet, since there is no corrective lens that has been made for this yet and no surgery either and so here I am with one eye legally blind, which is non-corrective. That is why when I say when my left eye is playing tricks on me I am concerned, because we all know when two don’t work…you got BUPKISS!

Now I will continue to try to get on with this visual demonstration.
It was quite challenging to try and explain what those bands or hugs that we get feel like since they not only encompass our limbs but our bellies and chests; the worst is the one that I get thankfully not too often around my neck, but I think I found a couple of examples of how that would be pictorially expressed;

Yes! That is what it feels just like!

Having numbness causes a whole bunch of social non-acceptable problems, like clumsiness, in other words dropping things and unfortunately as a diner guest this could happen:

And so many will stop asking you to even come over.
Your hearing may come and go too, not because you are deaf, but it is also part of the CNS or central nervous system to some extent, and for me at times it feels like the fullness in the ears you get when going on an airplane and also temporary earaches for me that come way too frequently. Neck and back pain and also hip pain are nasty indicators that you are in for it. The spasms feel like the worse muscle pulls charley horse that you could ever imagine and they come in everywhere, toes, neck, back, calves, arms you name it wherever you have one that is, muscle i.e. NO fun!
But alas here are some sites that you can copy and paste and get more information that is helpful if you too have MS!
http://www.webmd.com/multiple-sclerosis/features/when-ms-attacks
http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm226755.htm
http://my-ms.org/sensory.aspx
http://www.sharedsolutions.com/

My daily injections
Our daily oral medications:

Hubby and I Thanksgiving 2005:

before medications.
And me are you ready for it... drum roll please.................................................................................................................................

TODAY!I suppose the mystique is dead now...oh well all good things don't always have to come to an end; close your eyes! Too late,LOL!

On that note of hopefully not frightening you too much; you see in my opinion medical aid can sometimes help and sometimes hinder and I just want to say right now I am wondering… which is happening to me.
If not or even if so, take care, be well, be happy and may peace be with you and yours and count those blessings and share those overages and we will too!

And next time please be here or be square, OK?

PS Hubby stills looks the same as always that is why no current photo was necessary in the publishing of tonight's blog

Adjusting to doing what should be done...

We all have to live, right?
That is, I mean, if we are still within the realm of a viable body; which thankfully I still am and for that I am sincerely happy! Let’s face it though, its usage for all practicalities is limited by its restraints of my inabilities.
As miserable as all this is I have come to terms with the realization and reality of it all that this is what is what and there is absolutely no reason to think that I cannot allow myself to figure out how to handle this situation any differently than others that I have been in before…Now you tell me who in this lifetime has not found themselves in any type of tight circumstances on occasion, hmmm?
Besides Jack Kevorkian is dead now; sorry folks… I was sickly kidding!
As awful as I feel I will not allow that possibility to enter this strange brain flow of mine for the next decade at least.
Many are worse off than me I do know.
But, when things are going numb and your body parts are unwilling to co-operate it’s got to make you wonder…what if?
Yes, what if I was my old healthy self?
The one that is beginning to become a vague memory of my current self…
That’s right the person who went outside for fun and enjoyed the sun and surf and all outdoor games, fishing and crabbing, bicycling, boating, horseback riding and swimming and even race walking at a mighty speed of three miles in a forty minute time period!
Gosh, where is that girl, woman?
I miss her, me.
Not to be too morose but this is not who I thought that I would be at this stage in my life while so many of my cohorts are none the worse for wear.
Sure I am jealous, with each person who is my age or older than me when I see them walking or jogging past my home in the mornings…and all I can do is stare: I know that’s not polite but they can’t see me in my air-conditioned home sitting in my recliner since I can only long to be them from afar…
Heat is the enemy for all of us with MS, Multiple Sclerosis, and can be the prime cause of exacerbations of the illness.
Little did I know being out even in short spurts would cause me to have such a negative reaction and to screw up what I was trying for, to recondition my deteriorating body with a healthy regime of an exercise program.
All I can say is how can one person be so wrong.
That is actually rhetorical.
We all know when we come to ourselves and determination sometimes we don’t think all things clearly through, hmm?
I was a wee bit too Gung-ho in that I felt it was my passion to try to better myself, nothing ordinarily wrong with that concept at all...
But I must admit I do not have the team of professionals around that I did have many years ago, but that is not fair this is all my own undoing and no one else could or should be blamed for my own stupidity!
No one can know everything even about their own specific needs and deficits.
I am still learning so much, although I have been studying for maybe forty years about any ills that have historically befallen me or my family.

Curiosity, is a wonderful thing and learning should never ever stop and I am sure you all agree.
And so as long as this muscle in my head is not totally lost to cognitive misbehavior I will try harder to become a better student of my own fate. And that of the medical fate of others and make myself respectable in the thought of reasoning of not giving up and determining ways to conquer all difficulties in my life and continue with that same intensity of desire to help all others! Well, not all but as many as I logically can help, OK?

Gosh, that was refreshing to think about out loud, yep just to think with some positivity.
It gets tough thinking along those lines as many of you can relate to, too.

And so without hesitation let me leave you this evening with some more words of my wishing wisdom for all of you… take care, be well and happy with peace to all of you and yours and count those blessings and share all of those overages and we will too!

And for my own selfish sake please be here next time or be square, OK?
Thanks.

Life goes on, but how well is it going when you're not yourself anymore...

We all have down days and days in life that we feel are not going to end well at times… I suppose many can relate to that?
I had promised myself weeks ago that I would try hard not to harp on my ills but when they escalate as they most recently have it is a no brainer why I cannot.
This morning I felt the need to call back my neurologist to let her know that things have not changed for me significantly, and she reminded me, as if I did not know that it takes time for the infusions to work. And I said to her that I should know that since this was my third time in a little over two years that I have had them. But my numbies in both legs now and my face and neck, and my lefty (eye) playing hide and seek still, are more than worrisome to me anyway.

Last night, my glucose level was at 284, which called for 6 units of insulin which was administered with Hubby filling the syringe ( my eyesight is iffy at best and so it’s better that he does it and I can find my chubby arm easily enough thus the tag team) and by me injecting, ‘pin cushion woman’ here. Between the infusions, daily Copaxone injections, and now the insulin I do believe that is not such a farfetched title?
I asked my doc this morning if I should do the step down pills which I had left over from last August's infusions that had been stopped since I was out of insulin and it made my glucose go too high too, not any different from the infusions themselves. But this time I have six more insulin shots left that I had thought I wouldn’t need and I know now that I might since I am now on the step down pills according to the doctor’s orders. I am also upped on my Baclofen to an additional pill too.
I called out of fear of another weekend without any resolve and the fact she closes her office by noon on Fridays, what a nice job, huh?
Her recommendation was to get to emergency if I take a turn for the worse or at least see her next week if it is not showing improvement, ok.
My next appointment was set for August, my usual is seeing her about every three to four months or as needed, mostly for monitoring my Copaxone use and how that is going.
I tell you that sharps container is getting quite full and it my second large one in less than a year, and I am talking a BIG SUCKER!
Fortunately, we have a county disposal of such things that I have only been to once so far, due to that large sized one of a hazardous waste/sharps box that I had been given, I guess that was a good idea after all.
The nurse brought me a fourth and Copaxone/ shared solution had sent me my third months ago, and so I am good.
Perhaps I should take some in from those druggie neighbors?
I am kidding of course, since I fortunately never met any of them.
Besides that would be carrying being neighborly a wee bit too far I think, don’t you?

I am sitting here after another dose of steroid pills that I still don’t feel any different from, and I cannot have any wine until they are all gone!
Sadly I did look that up and it’s a definite no, no due to causing death from killing the liver very quickly!
More quickly than the slower methods we all seem to prefer, over many years…HA!

On that bit of a wee bit more silly note let me be the first to wish you and yours to take care and be well and happy and may peace be with all of you and yours and to share those blessings with whomever you care to and next time please be here or be square, OK?

Having three of anything invasive in twenty-six months is a daunting experience.

Hope this will be the last for a long time!
Trying to make heads or tales of it all since it is also quite wondrous; especially while on two other Multiple Sclerosis daily drugs of Copaxone injections each and everyday and 60MG of Baclofen daily too.
So far, my third beneficial IV infusion of my dosing of three days of Solumedrol is finis!
And I do believe that it should be working shortly.
I must admit I did sleep better last night and did not awake too many times.
My right leg though is disconcerting since it is still rather numb with my toes turning under on and off and my left eye is still playing hide and seek, my good one with the cataract lens. A worry of more optic neuritis is a constant concern with righty (eye) already gone. And there are no guarantees with any meds, are there?
Some like me have relinquished a bit more of themselves, meaning a few more deficits in abilities with each experience of exacerbations…sorry, but true.
When I removed the IV port carefully and all was done within the hour, this last one had a slight burning sensation and I fear it was because I forgot to take it out of the frig and only waited a little over an hour to use it; directions say eight hours, oops!
My arm also was slightly swollen when I removed it and so I iced it.
Yesterday, I had a minor red rash on my face, across my nose and cheeks for awhile but it went away and so I did not call anyone about it.
My nights have been needing the insulin injections since my blood glucose had been above 240 every-night.
You see once stopped, the steroids that is, my blood glucose is quite normal.
It is a hyperglycemic reaction to the steroids that has been so far temporary, thankfully, but consistent with each time I have had the infusions all three different occasions.

Good news: Hubby’s blood pressure went down earlier today than previous days!
One can only hope that his new combo of meds is finally working for him.
My jinx problem was working steadily in my head; I so hate to share that aspect of mine, especially with him or anyone really!

Any of my MS community peeps out there who may have had similar experiences please feel free to interject here. I do have a comments box below, just click on it and tell me what you have done about anything similar.
I suspect I only have three days worth and we had to discontinue the step down pills last time since my glucose went sky high and I suppose that is why they only give me three days of dosing while my cuz who also has MS has five days, she was diagnosed at 27 and is now 63, two and a half years older than me. She’s the Farrah Fawcett look-a-like?
And oddly enough she had her exacerbation just on Memorial weekend; how coincidental? She surprisingly called yesterday and what a nice surprise, and of course we could commiserate!
We are the third and fourth ones in our family with MS but our aunt and uncle, the others who had it have been long gone. Oddly enough they were only related by being married to her father and my mother’s other siblings. My mother and her father though were brother and sister, both also gone now and did not have MS.
We were all originally from NJ at one time where it seems to be a hot spot for MS, but many northern climates have been assumed that for some odd reasoning beyond my knowledge… No one still knows what causes it or we would have a cure, which we don't and it is an orphan disease only about five million of us worldwide.

Any-who, please all take care, be well and have peace in your life and your families too and share those blessings with them all!

And next time be here or be square, OK?