Thursday, April 28, 2016

It makes me crazy!

 The fact that people in general know very little about how differently Multiple sclerosis effects each person who acquires it and that the fact exists that you might think it was a different illness for each and every person it touches. So it makes me incensed when they, the general population that does not have it or really knows very little about it lumps all who have it with ways to treat it as if it can be fixed with the same method for everyone! NOPE!

So staying active is a wonderful idea for anyone who is NOT heat sensitive that causes them to end up again on IV steroids due to an exacerbation of MS.
I cannot go to a public swimming pool due to urinary incontinence since 2001, and that is the real reason why I stopped teaching water aerobics and I am a certified Aquacise instructor.  I had squamous cell carcinoma last June and since then I cannot even go into our own pool without fear of more skin cancer, and I had a sail cloth over the whole pool, and wore a floppy hat, sunglasses and zinc oxide on me when I got it for the first time after twenty-nine years of living in Florida back then!

I am the fourth person in my family with MS and no there is still no link hereditarily yet, the belief seems to be more environmentally as well as where in the hemisphere that you lived, in other words where you grew up and were born, colder climates have more prevalence, thus being from New Jersey are all possibilities, but if they knew for sure they would have a cure by now and they don't. Also years ago I read some where if you left before your fifteenth birthday you were less likely to get it, and no they had no reason for that just a fact that had been entered into their data at the time by information of statistics then. Thus moving south when our sons were ten and fourteen.

Why now did I want to discuss this again this evening due to so many things, but first the annoyance that our local NBC-2 news did a blurb about a guy doing exercises for his MS at their local gym in Ft. Myers, he's about my age and in a wheelchair now, but his arms work fine since he is in a manual wheelchair. I say good for him, yay!
But not all workouts are the same for all, especially with MS, he does upper body which is great, they kept saying he was doing lower, but no he never did any in the clip they showed and his legs looked lifeless to me, which they were and they had said that in the beginning of the story, so they goofed.

Sure there is not one way that as of yet a tried and true way that works for any one of us.
If there were we all would be cured!

But folks I am asking as one who has this insidious disease for more than a decade please never ever assume that  there is one way to help us, and that is kinda sweet of you that you want to, but don't assume that one magical snake oil or conventional way will help all of us, because it won't.

Sorry I felt that I just had to say this.
Today I had a premium mistake sent in to me the new OT thought I needed to have a sponge bath since I cannot bathe myself; it was in her notes.
I use my shower seat and hand held shower sprayer daily and bathe me and wash my hair every single day!
It is true that lifting my legs over the edge of the tub is becoming more difficult each day and that is where I think the misinformation may have generated.
But that is why Hubby is fixing his bathroom to be with a barrier free shower for me and my eventual motorized wheelchair!
Any-who I have spoken to the OT and the nurse to change my PT too, to a different way to help me.
Hopefully, by tomorrow I will see those changes.
Speaking my mind has worked for me quite often and so here I go again! Wish me luck.

On this note of speaking your mind most all of the time is important, allow me to wish all of you a very happy healthy safe and peaceful good night and ask you all to kindly count all your blessings and share all your overages with you know whom and we will too!

And next time please be here or be square, ya hear!

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