A Day OFF!

What?
You heard me, I said a day OFF!
Even so I found time to make something for us to eat and do some laundry too!
And read and watched some old time TV.
Than I guess I wasn't really off... bud dump bum.
Too hot to go outside or on the boat even.
And again I was told to rest without going into the pool, as per Lynn PA at the neuro's office.
So here I lie in my bed, but I do have different scenery in the living room I sit, make that recline in my recliner alongside Hubby.

Frustrating with thinking let's do this, and no we can't for one reason or another...DAMN GLOBAL WARMING!
AND MS!

I read a few articles without clear cut proof that smoking causes Multiple Sclerosis and pets were said to be responsible too.
GOOD GRIEF!
None of the articles had unequivocal proof, just theories based on it being viral or toxins that are surrounding us at so many levels so in the possibility the theory could hold water.
But again let me say there was NO proof! 
It's true, I did smoke, and have pets still have a pet, but do not smoke for over eleven years now.
Just my aunt and uncle alone also smoked and had pets at one time or another and both had MS.
Although, my cousin that is two and half years older than me who also has MS, but since she was twenty-seven years old, does not smoke but has pets always!
I bet if we took a survey most people will answer yes to one of those probability factors!
So in conclusion if you took a subway in the NYC underground back in the 1950s-1970s like I did than you might have Multiple Sclerosis?
Gosh folks I am making this up, do not adjust your screen! HEAR ME SAY IT IS NOT TRUE!
Toxins are everywhere and so are bacterium, so my theory still is that sadly we are a long way from an actual knowing the cause, but when we do we will have a cure! Yay!
Mark my words! YAY!

See what kind of trouble you can get into when you have nothing planned to do?
HA!

Oh I wrote to our local NBC TV station on their site today too, Facebook actually, NBC-2 out of Ft. Myers Florida.
They keep showing the animal cruelty films over and over again both shark ones, one being dragged behind a boat and the other being shot, horrible!
I suggested they stop, since the ones who did those terrible things that is what they want their fifteen minutes of fame and each and every time they show they are also encouraging copycats in my opinion!
What do you think about showing the cruelty films, right or wrong?

I will leave you all with that thought, and wish you all a very happy good night and ask you to share all your blessings and we will too!

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

Storm here now! GTG!
Editing if needed later.
 

More of the same.

The week's end, thankfully!
To say it had been uneventful would be a vast mistake.
Daily I tell what happens here; so if at all interested I do believe this online diary is accurate.

Today, I had my every few years RN from Shared Solutions part of TEVA that makes my Copaxone come to help me with any injection problems of their Multiple Sclerosis medication.
Remember when I mentioned that the auto inject was bouncing off of me and the medication had popped out spraying my eyes, and another time just into the air?
Well, it was a left arm shot today and with the nurse here I showed her how I do it, and...it went perfectly!
Isn't that always the way?
We had a bit of a strain from the beginning though, her and I.
Initially when she made the appointment, I had agreed to Wednesday, but after I realized that would be my left hip, I requested changing it to the same time of eleven but instead on Friday when it would be in my left arm, a more accessible limb and less embarrassing for a first time visit. I know a nurse... but in your home sometimes it is different, anyway...a few days later Sharon the injection RN requested a moving up to ten thirty, and I said that would be fine, actually if I recall she just said earlier leaving time to get to her next patient, maybe she didn't say patient, could have been person... anyway so I suggested ten thirty; the time was set for ten thirty on Friday!
Ten thirty came so Hubby took Gus outside since we still aren't sure about his behavior with strangers, by ten to eleven I was getting annoyed, where was she?
I did not get her number so I called Shared Solutions the company she works for and is part of TEVA who makes Copaxone.
They called her cell.
She was on the interstate she said when she called me and that she would be here in about five minutes. I told her that our dog has problems with new people so my husband takes him outside and that it was hot out there!
She apologized, and arrived about twenty minutes later, and after all was said and done I did my little dance to show her and I did it to perfection and so now I was stumped... although she did notice a ridged right upper arm had too many injections in that general area and I should not do it there anymore after seven years.
Though above it not too far is okay to continue the shots.
I informed her that I had been to my neuro's yesterday and was told that I will be staying on Copaxone since it neither affects the heart nor the kidneys.
No medication changes for me then.
In fact Lynn the PA in the neuro's office yesterday informed me that she had been a renal nurse for twenty years prior to working for my new neuro doctor, and went over all my meds with me to make sure they had no negative bearing on my kidneys and they are all fine.
Whew!
After Sharon and I apologized to one another, actually while we were chatting my chronic care nurse Debbie called!
I asked to call her back, and explained I was with my nurse, oops!
She thought I had another nurse replacing her, at least her reaction indicated that!
After I explained who and why she was here I said I would call her back when we were all done/
Of course I got her machine and when she returned the call she got me during lunch, but unlike when we were out to lunch yesterday in the Thai Café when Hubby got the call on his cell which he hates when people he did not give his number to call... anyway it was in the system for emergency, and she wanted to know about me in the hospital, which by then I was long out since the night before and was never even admitted and sitting eating lunch across from Hubby!  He was abrupt with her and said we are eating lunch to call back later on, on our home line.
Or some such thing. I did speak with her later, she had just wanted to tell me that she had all info about my GFR tests and they would be faxing them over to the nephrologist's office, and I told her that we gave them all we had yesterday to copy.
Thus the today annoyance I suspect was due to yesterday.
Oh but I had called her back then too and told her that Dr. Nord and I had messaged back and forth and by six last night she was well aware of everything.

Move onto three P.M. today, Hubby goes out to the mailbox and gets our CenturyLink bill, and sticker shock for $97+!
Our previous bill was $54.69, our discounted bill that game that you play with those people at CenturyLink where if you don't call you don't get the discounts!
Ours we were told was all settled last month to stay at the same price forever.
But today they tried charging the difference from the last bill plus late fees!
WHAT?
Bait and switch and this company should be on everyone's watch list!
Make sure that you get your promised discounts and don't fall for that lifetime never change deal, it's BS! Sorry folks but in my opinion, $80 bucks is.
Sorry mostly for my vile use of the English language, so unlike me, please forgive, but necessary to express the truth.
Oh when the supervisor Holly Danner in Shreveport LA, checked she confirmed what we said to be true and apologized and told us to again pay the $54.69 that we were told to.
Halleluiah!

What a week between the hospital visit, and not sleeping well, trying to get all this medical stuff straightened out!
Looking forward to the weekend... what am I talking about I am retired everyday is a weekend, that is except for everyone who is working...that we have to deal with for our lives!

Oh well.

Let me be the very first to wish all of you a very happy good night and ask you to kindly count all your blessings and we will too!

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

MS Hugs on left side.

Multiple Sclerosis gives people sensory issues, numbness, tingling, burning, ripping and squeezing, AKA as hugs.
Usually, the difference between MS and heart left sided pain is the fact that MS is usually bi-lateral and heart attacks as well as strokes are on only on one side.
So when from my left side of my neck, and left side of my shoulder and under the breast on the left side started squeezing in waves, sort of regular as if in labor but there, not in my belly... what resonated in my ear was how my chronic care nurses would say due to my age and obesity to go to the ER to be checked out and so we did!
They did all the right things there and found my heart, oh they actually found it fine and healthy I meant to say, ha!
I started to smile when the hugs began to be bi-lateral, no they did not feel good, but being on both sides was reassuring my heart was fine.
Hubby took a loud stand when we arrived there telling them no medications unless he approves of them; his husbandly concerns were from a year and half ago when they overdosed me on a morphine concoction combined with other drugs, they actually flat lined me, but as you all know they also brought me back! Here I am! Sadly that was my third time that had happened, but my first time there.
So ask me what's on the other side?
Kidding, apparently, I wasn't there long enough, ha!
Thus Hubby's logical angry standing up for me, his wife.
And so they did treat me cautiously and felt I was deemed well enough to go home with a mild prescription for Decadron, a mild corticosteroid.
This morning I had my new neuro's appointment.
Saw her PA, Lynn, and she said that I did not need that, but called in a medication for sleep.
True I am rather a night owl, not by choice though.
Pain and worries do keep me up.
I just found out that my GFR was actually taken in the hospital the day of my sleeve surgery and it was 49.6, and I was confused if the doctor knew I was in stage three renal failure was it advantageous to do the surgery? And if he did know why continue with the high protein diet that was contraindicated  for CKD, chronic kidney disease?
So many questions and the reason I suppose of my worries.
And why wasn't my last neuro informed of my CKD before allowing dye for my MRIs this past April?
Also contraindicated for CKD?
Yep, I guess I am worried.
And that can cause exacerbation of any disease, and difficulty in sleeping too.
But I believe rightfully so.
What happened to first do no harm?
The Hippocratic Oath, now it appears to stand for hypocrisy way too often in medicine.
We all went from patients to clients to customers in a way too short a time frame, maybe fifty years?
But in the bigger picture of medicine that is a blip in time, I want it fixed!
We as human beings must demand it.
Sue, sue, sue does not fix it, it makes more anger and wedges a wall between practicing medicine and worrying about paying for higher priced malpractice insurance.
We are all people here, and most of us just want superior what used to be consistently good medicine practices when the patient came first!
Honesty and care, true care for the body of the human entrusting their wellbeing literally in your hands!
Oh I don't know... I feel like saying trust no one, but then what?

All of you have a happy good night please and share what blessing you have and we will too!

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

     

Nothing serious, but just came back from the hospital...

Seems like my MS caused trouble again in spite of extra medication.

TTYT

Habits

At times in life we have to create "good" ones, i.e. habits.
Over the years I have had a few and I am happy to say that.
Race walking three miles a day in forty minutes for four years. (work hours changed that)
Working out at the gym for four years then. (falling and numbness changed that)
Teaching and prior to that going to Aquacise classes for also four years. (having an issue with my body functions plus too warm pool water put a stop to that)
Quitting smoking for now it's over eleven years; broke that four year lasting habits and so far sticking with that forever or until I turn eighty, surpassing my parents ages, and then I might have one!
Why not, by then they might find out it was a good thing to do, ha! Nah, never.
Oh my latest good habit is going into our swimming pool, so far three times in the last ten days, I think. I think that habit's frequency will have to improve.
I do have it documented here, somewhere that is in about in how many days.
Unfortunately, I am not organized yet with my in water exercises.
I am currently just enjoying the freedom of being in the water that gives to anyone with less mobility on land.
My very first impression and experience that caused amazement is when I was in PT, physical therapy way back in 1996-7 for when I could not walk for six months, at the time they blamed my Fibromyalgia, but I truly believe it was the MS back then too, anyway they showed me at the rehab a paraplegic when he was once lowered by a special machine how he was able to maneuver in the water, and that I thought was incredible! (Although, I have swum since a five year old and had my junior life saving at age fifteen.)
My biggest issue then once I got into the water was walking backwards for those muscles were very nearly atrophied.
So water therapy was my biggest help back then and after I graduated they put me in touch with the Aquacise class that the Arthritis Foundation had there for free at the time and so once I connected with them I took that class three times a week that was taught by an eighty-eight year old woman that would make anyone a believer in water therapy!
And due to my love of the whole thing and exuberance in class it was suggested that I get certified to teach and so I did.
It was pure joy.
Teaching those seniors when I was the kid.
I spoke loud enough in the pool so even the ones who had taken out their hearing aids liked me since they could still hear me without them!
They became my surrogate parents, especially it seemed when they found out mine had passed away. I was still in my forties then and their mean age was seventy-five. 
I truly loved them.
I went to the arthritis support group and I don't know for sure but I think due to my outspokenness they voted me co-president with a dapper dresser of a man, an octogenarian, a truly handsome oldster, who loved to dance, Fred Mack a very nice man. Sadly he passed away in April of 2009 he was in his nineties by then and in the same hospital unbeknownst to me when I was there for my first IV Solu Medrol infusions. I found out way after he died.
Soon I was offered to take over the local fundraising of the fashion shows, something I actually knew quite a bit about. I had modeled for department stores on and off from the age of seven until twenty-one. And in college a course was included on giving fashion shows, and so I took that and it helped when I worked in Daytona in promotion and later on for fundraising for the Arthritis Foundation we had luncheon fashion shows, several, plus a combo fashion and entertainment show a three hour production. I also had one Golf Tournament.
I eventually besides getting certified in teaching water aerobics, I received CEUs in grant writing and teaching a self help course.
So it was quite a wonderful ten years that I also was one of their board members, and even went to hear the doctors who received grants from us on new findings in helping arthritis and went to meetings usually in Tampa, Ft. Myers and Orlando Florida for the board, and in 2005 we were wined and dined and flown to Nashville by Glaxco Smith Kline to hear about their new arthritis medication for osteoporosis, and other non profits were there too all from the southeast from Alzheimer's to you name the illness and they were there to hear about new medications the pharmaceutical company was hawking. They put us up at the Loews Hotel in Nashville and we even made a tourist stop at a recording studio where we all sang and recorded Garth Brooks song Friends in Low Places and received the discs, so very cool!
Three years later I resigned in 2008, too many personal issues and I was not emotionally or physically doing well.
My priorities changed.
I do have eight of the more than one hundred types of arthritis's there are, goto to learn more:  arthritis.org
My Multiple Sclerosis took me over to be more significant than the arthritis.

A few years back I did try volunteering again with a local clinic, but the nurse who was training me had no patience and found fault with everything I did, and was not available when she would leave me on my own for me to ask questions. And a clinic setting was more important because it dealt with medications and dosages, and that needed to be exact. Without access to ask questions I felt out of my element and with her bullying attitude when I did finally get to ask her, I thought it best for me to quit.
Not proud about that, but I was finding it difficult to maneuver in the facility too, too tight for even my walker then.
The woman in charge at the time, Doreen, we had hit it off, and she asked me to reconsider, but I felt that it was not a good fit literally and figuratively.

Oh where was I?
That's right habits, good ones... to date I continue not to smoke and try as best I can to fit in capable types of exercise plans from PT to independent exercises to swimming. although stopping for legitimate reasons any time that is necessary.
I guess my rules are different these days, which is quite alright, since I am a free agent and I have to do whatever I can to succeed to keep on going!
Too many medical problems so I adjust accordingly.

The rain is here again, but has very little to do with Tropical Storm Emily that depressed into nothingness and left the state and is not supposed to restart again in the Atlantic as it was first thought would happen.
This rain is due to other factors that only meteorologists can explain correctly, but I think it is left over moisture that built up from our high temperatures, basically our usual here.
Just a laywoman's concept.

On that note allow me to be the very first to wish all of you a very happy good night and ask you all to kindly count all your blessings and we will too!

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

Weather, weather, weather...!

She came she saw and she conquered that is EMILY, short lived tropical storm forming in record time from last night's inception of a depression to this mornings creation of that tropical storm, but apparently made her mark on thirty-one of our sixty-seven counties in this fine Sunshine State of Florida, the governor has declared a state of emergency!
Sorrowfully it reminds me a very, very little like Hurricane Charley where our area was physically devastated with homes destroyed and truck in trees and roofs in canals and our own Gazebo gone too and less than ten miles away was untouched. That was a category 4 with 145 miles an hour winds storm/ HURRICANE, and little Emily was just a tropical storm that was at its fiercest had 45MH with 65 MPH gusts, without causing us anything more than a rain storm here. Many areas away from us saw more, erosion on beaches with choppy surf  south of us in Cape Coral, a large branch going through a pool cage in Naples also south of us, with a hotel resort having its roof torn off and causing damage to two of its rooms on Ft. Myers Beach, also south of us! North in Tampa a mobile home had a tree land on it creating a devastation for them. Flooding was sporadic and is receding now.
But now the gal EMILY has tamed and has diminished into little more than a tropical depression and on her way exiting our state via our east coast!
Just in: All watches and warnings have been dropped!

A sampling of what's to come this coming month, tomorrow August the notorious high time for hurricanes!

Let's hope not.

Moving on...

So much else going on such as the "mooch" has quit: https://www.yahoo.com/news/anthony-scaramucci-white-house-communications-director-11-days-reports-190158404.html

General John Kelly has been sworn in today as the newest Whitehouse Chief of Staff, which these days means within days he will be swearing as he leaves! But he is not a quitter; good luck!https://en.wikipedia.org/wiki/John_F._Kelly

Two words: calm cohesion.

Moving on once again...

I signed up for a class to learn about CKD, chronic kidney disease, the class is this month in a few weeks and taught by a dialysis nurse.
I spoke to Laurie Carpenter on the phone today, the nurse teaching the class.
And mentioned my avid reading since I found out about my newest diagnosis of stage three renal failure. She agreed with my theory that the very high protein diet I was put on after my bariatric sleeve surgery may be contributory to my condition that shows up in blood work in January not in August of 2016, and in fact according to pre-op blood work done in September there was no indication of any kidney disease with all blood work in normal range.
Any-who, and also that I am not a type two diabetic with an A1c of 5.7, which is a slight pre-diabetic, but distorted due to the IV steroids infusions done a month prior to testing.
And through other investigating I have found that Multiple Sclerosis can be responsible too as it is progressive for CKD.
Odd that once I stopped taking too much high protein drinks daily I leveled off in my blood work for the GFR, which determines that I have stage three kidney failure, mine is only 53, the range for stage three is 30- 60, which means kidney failure. Sadly, once it begins it cannot be reversed, but it can be slowed for years and years and that is what I want to accomplish. There are two stage threes; a 3a and 3b, and I am stage 3a, the lesser of the two three stages that means better than stage 3b.
Stage 4 you need dialysis and stage 5 is when you need a transplant and you should get your paperwork/ life in order, actually that is always, getting yourself in order, ha... I know not that that is not funny in this context.
Why stages one and two are barely discussed I have no idea, but I do believe we should have.
Than maybe three wouldn't have happened?

I heard back from my chronic care nurse who was supposed to follow up on my referral for the nephrologist, and it was ready to go in on Friday except for the nephrologists name!
That long Indian name that I could not pronounce sadly, and so I said I would go into the other room and get it that it was written down and we ended the phone call..., oh well.
The name of the group was easy and Debbie the chronic care nurse remembered after all and took care of it and so now it is delayed probably till Wednesday!
And that is the day my Copaxone will be delivered again.
We have to sign for it since it is refrigerated.
So we are here all day, but UPS once delivered it to the wrong house and here it is usually always hot and it sat there all day long since they were not home!
Thus the signing for it.

Next I had called the nurse Cindy, from Dr. Montoya's office the new neuro and told her what was still going on and not improving, my sensory issues and the four times a day with the Gabapentin, and I also mentioned my stage three kidney failure, since Laurie said I should.
And now I am scheduled to see the ARPN Lyn in a couple of days to see what can be done?

WHOA what a tangled web I weave when I tell all to all!
Sadly, I wish it was to deceive, but Dagnabit it's all TRUE!

I should change this title to speaking my truth, hmm?
NAH.

On that note allow me to be the very first to wish all of you a very happy good night and ask you all to kindly share all those blessings and we will too!

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


 

Sporadic working interventions

Sensory problems in Multiple Sclerosis, numbness, tingling, burning, electric shock sensations, spasms... if asked I would have to check all of the above box.
Once established and knowing the cause doing what should be done to take care of the problem(s) is what is next on the agenda!
Problem solving, a job that most of us are well familiar with in most all businesses, career paths or parenthood alike those muscles have been taught/taut to succeed, ha!
Fixing some problems are done by trial and error, or a way of exactness with well defined perimeters and known results.
So when it comes to medical issues that would mean science is involved so scientifically tried and true methods should be used, although, medicine in treatment is still called "a practice" though science is an exacting form of much substance, hmm?
Thus the conclusion one must draw from that, Geez, I gotta use the term, "assumption" is that it should by all rights work, true?
Especially when it has been proven to work in the past for someone using it for the same or similar use or purpose, true?
Albeit many a chemical product has been utilized for a patient and when not used for some time that person/patient might become immune or allergic to its benefits; also true.
Example me: I have been using according to doctor approved dose of 1200 mg. of Gabapentin daily for above symptoms and yet I must still use ice packs and the medication still takes an hour to kick in for its full but short lived benefits to kick in, the last time this happened with another drug I knew it was time for me and it to part company!
I cannot continue to use anything that fails to work and requires possibly higher doses than I am willing to take...only thing is I now have to wean myself off of something while still dealing with these major sensory problems!
Guess I will have to discuss it once again with my new neuros assistants tomorrow.
Thanks, you have no idea how I love these little chats and how much it helps me, and it is so nice to have someone who really just listens, a great sounding board, so thanks again, truly! HA! Nah.

Moving on...

Rained on and off all day long! So no boating or swimming due to thunder and lightning here; if just rain oh poo, no big deal.
What happened to this my sunshine state? (Kidding; it is our state's rainy season!)
Well, at least no hurricanes in the forecast.
Although, August is the historically busy season for such things, OH NO two days away!
September too has a reputation for nasty weather.
Stay tuned.
Hope everyone stays well prepared and has their plans at the ready!


On that note, allow me to be the very first to wish you all a very happy good night and ask you all to share those blessings and we will too!

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