Amazing how a company can follow up when you don't even have their product yet!

Last evening I received a phone call from the pharmaceutical company that makes the medication that my neurologist wants me to be on, me too by the way, for my RRMS, relapsing-remitting Multiple Sclerosis.
They were following up on her, my doctor’s request to get me ready for when I will be on the injections, what have you the front men, or in this case the front women.

This was including my own personal contact person in the state of IN, Indiana, she just wanted to let me know that they would be sending me by FEDEX my automatic injector within the next few days, and also the RN, registered nurse that will be teaching me how to inject this daily medication called me this morning. Who is local by only being about a hundred miles north of here.

They did give me to another RN last night to ask any questions I might have, but that one was in another mid-west state MO, Missouri I believe she said.
And I was also told that I would be having a peer advisor to talk to any-time I needed to discuss my feelings or if I had any questions, so far I have not heard from her, but I am sure I will.

This is the most attention I have had since … gosh I really don’t know since when? LOL
And if it weren’t for the reason of me having an incurable disease I would almost be enjoying it.
Who can complain being in the center of a program that will give my diagnosis the wings to be respected in the sense of having people wanting to do something about it, I know I am not too proud to accept the help that I truly need and have wanted for years!

The crazy part of all this is that I don’t have the medication yet or even the forms to fill out to get the financial information taken care of.

You know, I figured it out, the number crunching I mean, and if I were able to live a mere twenty more years, who knows with medication I could that if they approve me for the financial assistance that it would be nearly three quarters of a million dollars worth of injections! Mind boggling, huh?
I suppose they are capable, but still that’s a lot of bucks!

Any-who, I did go into the pool this afternoon after lunch because would you believe the air temperature only got up to the eighty-five degrees that I needed by then, but oddly enough the pool was at eighty-six degrees earlier then the air finally caught up!
Unfortunately, after only forty-five minutes my upper right side went into severe spasms so Hubby went into the house to get my Baclofen and I took two of them and relaxed for few moments and then went in to shower and change, a warm shower seems to help too.
Oh well, I did have a not too short workout.

I did something else this morning I went on the site where I got my reasonable mobility scooter and looked up their cost of walkers with seats and I found one that was a fraction of the cost of the local medical supplies because it was on sale for one hundred and twenty-one bucks off! And so I ordered it at that bargain price, which is nearly what an old used one would be. My idea is to try and walk a wee bit and rest with that seat and perhaps I could take off some of this nasty weight and not have my hips hurt so much!
But I need to be able to rest and the Ataxia has screwed me up so badly with my balance that this might work if I don’t go gung ho right away and pace myself.

On that more positive concept I will wish you all a very pleasant good night and to all count those blessings and we will too!

Are my hopes going to be dashed?

Today I made a disturbing finding that my future medication’s price tag yearly cost is a few thousand dollars more than our yearly income!
Wow! How is that possible?
Who are those people that can afford to have Multiple Sclerosis and pay for feeling better, more easily than we poor people can afford to?

Frighteningly, that has been a proven theory of mine and the rest of the thinking people of the world that we know, what am I talking about you ask?
That only the wealthy will survive these illnesses.
Does that sound fair?

On the positive side they have programs for us falling between the cracks types, that we can fill out the paperwork just for the asking for some consideration to be privileged enough to be in their scholarship program, huh?
That’s what this feels like.
Can I pay it back when I am cured like with college loans on gainful employment? LOL, wouldn’t that be great!
OH NO! But this medication is not a cure; it will just prevent more relapses and stop the disease from progressing! I still want in and bad!
Again I must figuratively jump through their hoops to hopefully meet their criteria to be exposed to wellness!
If not, too bad on you!
And we have flunked many before.
Why would anyone want to continually get smacked in the face with these refusals?
A glutton for punishment I suspect or perhaps it’s just my unwieldy perseverance?

And they are sending me the forms to fill out in the mail real soon in a plain white wrapper the contact woman kept saying as if I really cared who knows I can’t afford tens of thousands of dollars a year to pay for medication, really, yippee!

I suppose they feel that it is less embarrassing, huh?
People are losing their jobs, homes, and life savings all I know is that I can’t afford medication for my illness.
And of course I will fill them out, my discreet new friend!
Who really cares if they send me the forms in a bright red envelope, I will still send them back express, whatever that means, fast I guess?

I had some pool time again this morning and heard back from my English Prof friend who was kind enough to commiserate with my situation with the medication and told me of her personal experience with high price, but curative medication that actually was over four thousand for only a three weeks dosage! But it did make her better from that horrid dermatological infection that was systemic ill and caused while hospitalized.
But fortunately her Hubby’s insurance paid the bill except for the acceptable meager amount of twenty-five bucks!
Not as comforting as one may think.

Before I go into to my unjust jealousy mode I will wish you all a very good night and to all count those blessings and we will too!

Left the compound today with a purpose...and I believe many issues may have some eventual resolve.

In more simplistic dialogue I went to my neurologist and now it looks as if I may very well have been put on an injectable medication for the RRMS, Relapsing–Remitting Multiple Sclerosis as it is called, and the medication is Copaxone, and oddly enough I am saying hooray to that!
For most people going onto medication of any sort is at the very least a not very nice experience and the sooner that you can get off of it the better, and at the very best it is a cure for whatever is ailing you at the time of your need.

This is neither of those things; what it is, is a lifestyle change since it encompasses my hope for my future of not getting any worse than I already am!
It is not a cure or a temporary fix for the MS but a way to help prevent more relapses and less damage over the long haul and that is why I am so pumped up with these juices of excitement.
The only possible glitches are if I am unable to get the financial assistance to support this drug habit, figuratively speaking, no literally! Because, you see this is a life long commitment to the therapy of a daily injection.

This well appointed medication came with an entire package deal; no, I mean it, a hard cardboard folder like thing which contains a spiral information booklet in the kit and DVD to boot.
I began watching the DVD at four o’clock and by five twenty it was still going and Hubby fortunately had made dinner tonight since I was still not feeling too well, and he called me to dinner, and so that informational DVD is on hold now and who knows how much more is on it? LOL It seems to go on forever…

I also had the doc take care of the form to continue with my disability form for parking the car that is up on 7-10, which she did readily.
All in all it was a positive day in the need to take care of business department.

The other nice thing that occurred today was the email note from my old English Prof friend from the writer's workshop and she told me about our possible future barbecue and that she is in, which is great!
But I hope I am feeling great to do all it entails, Hubby is more than willing to hold up his end of the deal, by doing the barbecuing.
Now there are salads and dessert to make and that usually falls on my responsibility, and so that is why I said we will see.

Hopefully that party will happen.

Good night to all and to all count those blessings and we will too!

It's Official...We are in the rainy season!

But a wee bit early for it.
We just not only had a good old fashion rainstorm but a power outage for nearly two hours!
Yes, that is the demarcation for the Florida wet season.
I know most will argue that it actually starts next month.
With the power outage though that’s my proof!

In my opinion I think this was just a test for what’s to come, considering our power company said there were only two hundred and thirty homes here without power for those two hours.
I think it was a good reminder, better yet wake up call, to stock up on batteries, and to roll out those generators and dust them off and power them up to check them out!

Here when you contact the FPL, Florida Power and Light Company all you do is dial 1-800-4-OUTAGE, easy enough to remember and thankfully I have over the years.
That number puts you in touch with a computerized voice that gets your location from your phone number and asks when they want to give you updates if the home number or a cell number is the best contact number, and they do follow through; a power life-line to find out when comfort will return.
You see; when these outages occur they seem to come with the high humidity of the storm logically, but the rain cools the air and you find yourself opening windows since the air-conditioner cannot work, which just brings that humidity in, therefore compromising true comfort, got that?
A vicious cycle, huh?
For me anyway, the humidity weighs me down, my muscles weaken more, and I feel as though the air is doing the nasties all over me!
All body functions are amplified in the negative.
So much so Hubby had to go out to the garage into the car to get my walker!
I try not to use it inside due to the little four footed friends, but now only Skipper I was too afraid of running him over, and I furniture walk in our home instead, but in other peoples homes I will use it to get to a seat not unlike when going into a restaurant.
I do have canes but switching off hurts my shoulders and dummy here tried those things when we had solar guy and insurance guy over last week, all that did was have my shoulders act up once again!

Any-who that is why this is a wee bit later tonight than usual.
It was a lovely beginning to the day today and I did get my pool time in before the storm hit, just before we had our lunch. I knew it was time to get out when the breeze came up around me in the pool, like a chilly vortex, and then a sprinkling of rain began!

And I took a bit of an afternoon nap too today for a whole forty-five minutes.
A half an hour was a smidge to little and the extra fifteen minutes seemed to help and was just right!

Please all of you have a very good night and count those blessings of yours and we will too!

Nashville Fundraiser here in Florida and dear older friend's birthday wishes, and my birthday twin's working hard on our genealogy!

Fort Myer’s Florida is the locale for the fundraiser today to help the people of Nashville Tennessee and I am also sure all those surrounding areas impacted with that dreadful flooding!
I only knew about it due to me being on Facebook and so I thought it beneficial to contact my toddler hood pal up their in Tennessee and let her know that we know down here all about their disastrous happenings and that people cared enough to help!

With that said, my dear old chum misunderstood my involvement and thought that I was the one responsible for the fundraiser, and I sure wish I had the ability to do that but I didn’t and I hadn’t. And so I did let her know who I believe is responsible and that took an awful weight of guilt off of me. I only claim what is mine, not unlike the rest of you I am sure.

I thought it also rather interesting that today is that particular friend’s monumentus sixtieth birthday, and to be honest and fair she is just six weeks my senior.
Decades determine milestones in my book and all should be counted and as we age perhaps bi-decades should then be afforded that same respect, what do you think?

My birthday twin of a cousin which may be confusing to some of you, let me explain it is that we actually have the same day and year birthdays and she has been working for years on our genealogy and she is brilliant the way she shuffles all the generations and her research is impeccable, only on occasions there are a few, very few slight glitches in the program that is used. I am relentless in informing her when it screws up about my branch of the families’ info.
I fear that she may take it personally since I write back intensely when I see the mistake to let her know, but just don’t understand why the program keeps putting my father’s last wife that he had for only a year as my younger son’s second wife?
It drives me batty, and she would have been way too old for him!
When Dad married the woman, three years after my Mom passed away that woman was seventy-five and he was seventy-eight, and the one son that the computer is trying so hard to make my younger son’s wife and he was just nine years old at that time!
It’s just so weird to me.
Any-who, my cousin knows how to fix it; I think?

Aside from our nearly two hour visit to the grocery today I have been explaining away things on this technical marvel in my spare time, and oh yes I finished that book I started yesterday it was only a little over three hundred pages called, ‘Dark Shadow’ most recent one from one of my favorite authors, Randy Wayne White, a local guy, who is famous here, and can’t write fast enough for me and Hubby, yes we share, and also has a few restaurants named after his main character in his books, and that is: Doc Ford thus the Doc Ford restaurants in Fort Myers and Sanibel.
His sites for your info is, copy and paste: http://docfords.com/
http://randywaynewhite.com/Site2/Welcome%21.html

Oh you are wondering why we took two hours at the grocery…silly it was an outing!
And we were out of everything, get it?

On that silly note I will bid you all a very good night and suggest for you to count those blessings and we will too!

Ten out of thirty-five best beaches in the USA are right here in Florida folks!

Does anyone read their welcome screen that your online provider puts there for that purpose; we do and update it several times a day by hitting the refresh button!
That’s where I get a lot of current information, doesn’t everyone?

That the fact that we have all those great beaches for the world to visit was on this afternoon’s welcome screen, how about that?

I also found out that Barbara Walter’s heart valve replacement surgery went well today, and she will be back to work in September. Good for you Barbara! Happy to hear that!
And that Regis Philbin will be having blood clot surgery on his leg and he will be only out one day from work, and he’s seventy-eight! Show off! Just kidding folks, but isn’t he something?

I think that Betty White has brought out all those truly hardy seniors that have either very few ills for their ages or none at all!
And that is amazing!
It used to be unusual for septuagenarians and octogenarians etc. it was considered for them to be normally making only funeral arrangements, not parachuting dates, water skiing and rock climbing arrangements! But they are, as well as dates out with a new person they might have just met, travel plans to go to wild and crazy places, and even wedding plans!
I want some of what they had! LOL
Thank heavens for all of them.
Did you also notice that the age of Willard Scott’s Smucker’s centurions are also surpassing that even one hundred milestone number and some that he has wished a happy birthday to have actually been over a hundred and ten? Wild! More power to them I say!

That terrible plane crash in Libya the other day had a sole survivor that nine year old Dutch boy. It has happened a few times before in other plane crashes with only one child survivor. If I was more religious I would call it a miracle. But I truly wonder how that does actually happen, do you?

The President got tough today about the oil spill needing to be cleaned up!
Good for you sir, and I do mean that…nothing else seems to work, maybe a stern scolding might since those companies are acting quite child-like!
I am being sincere though, it seems like they who have been so-called experts trying for the last twenty-five days have no idea how to fix it, and no matter what they try it doesn’t seem to be working!
Who put them in-charge of this?
And why didn’t they think of this ever becoming a possibility?
I know hind-sight, huh?
You oil people claim to be professionals in your fields then why haven’t you done feasibility studies with all scenarios prior to this incident of catastrophic impact?
DENIAL that it could happen perhaps? Or just arrogance that it couldn’t happen to you?
Didn’t we all learn a valuable lesson from the Exxon Valdez disaster back in 1989?
I guess many did but what’s your excuse: so you weren’t paying any attention?
Shame on you!

Think about it folks…

Good night to all and to all count those blessings and we will too!

Message to WORLD...THE ONLY OIL ON FLORIDA BEACHES IS SUNTAN OIL FOLKS! AND…That's not really on the beaches it's on PEOPLE sunning themselves on them! So come on down or over or what have you, ya hear?

Now that that is out of the way, by the way you are very welcome our state chamber of commerce and all you local offices too.
We have been hot and sunny for the last several weeks with our beaches all of them still quite pristine.
So please folks don’t change those plans to visit us because we are waiting here for you all to come on down.
Even the problem here with the broken sewer line that dumped ten thousand gallons of raw sewerage into our nearby waterway, and now the bacterial advisory was cleared and proven to be all clean and all good again by the testing!
Our beaches, hotels, restaurants and activities are all here for you to enjoy!

Today we went out and about to do a few errands.
The library was first on our agenda to return and chose some books, which is the branch that is also part of the Cultural Center so we did go in there for a visit to see what might be going on and to our surprise a small gaggle of Red Hat Society women were there. For what we do not know, but it did appear to be some type of tour; and the bits and pieces of conversation that I though I heard was that they were possibly looking for a meeting location.
We checked out the shops too and looked at the hallway walls, which tell you what classes are available. Many were half or full day workshops, but alas Hubby and I didn’t see any that suited our enjoyment wants or desires.
Fortunately, we did locate four books to borrow from the library.

From there we went to lunch at the outer edge of the malls parking lot where many of the chain restaurants reside. We had chosen the Italian one offering all you could eat soup salad and bread sticks, Hubby had the chicken flatbread both again our usual beverages of unsweet iced tea with lemon and coffee.

Hubby suggested stopping on the way home at one of those charity run stores to look for a walker with a seat for me. You see mine is quite old that I did get years ago when we had insurance, its now in another Rube Goldberg piece that Hubby added wheels to, and has no seat. The theory is that if I had one with a seat to rest I might be able to try a bit of walking when we went out having no pain or exhaustion and not needing to take out the scooter so often. A second hand one would be fine for me and cost effective too, since new ones are very expensive as much as a few hundred bucks, would you believe, and without insurance or Medicare that is out of pocket monies for us! This falling between the cracks thing is getting old.

Last stop was the smaller chain hardware store to get propane and orchid food, it was a one stop shop since I had called ahead before leaving home and they had both!


I had every intention of going in the pool before we left this morning, but it never got up to eighty, and so I showered and changed to go out, and while we were out it got into the high eighties and low nineties!

The solar project took a not so good turn today; a little more research now is seemingly making our previous number crunching and feasibility study not jive with our desires of not having anymore financial concerns. We told the company that we would let them know in about a week or so. Hubby thought we should possibly get another price, which is a good idea and what we have always done in the past on these sorts of things. I will continue to keep you posted.

We seriously hope that our invitation to visit here is utilized, and I will say it again as formally as you like,”COME ON DOWN FOLKS!” The Florida coast is waiting for all of you!

Good night to all and to all count those blessings and we will too!