Monday, August 17, 2015

Back from neuro's office

The most recent blood-work shows an infection that they, neuro's pa feels caused the exacerbation, quite high white blood cell count, now I at least know why the low grade fever all this time, hmm?
Probably my sinuses, and now have another ENT appointment.

Spoke with eye doc too and since my eyes are still not good I will be seeing, odd chose of word, although appropriate, again. 
 Feeling pooped... TTYL
 

Sunday, August 16, 2015

So I was thinking that...

As Americans we enjoy speaking our thoughts out loud, and that's a given; true?
Caution in expression when you have one or more on here, hmm?
Everything is copacetic, meaning, very satisfactory; but when it comes to the world it sadly is not.
The tendency is to check our words, since they are so powerful and can make you and who you use them on happy, sad, mad, etc.

So watch out! (Especially me.)

Moving on...

Next thought and odd to many; I am bruised from the IVs like I had not been before, two locations on that side, my left arm where the nurse, who just so happened to be older than me and suffers from  retinitis pigmentosa, so it took her three tries the first time and two on the second. And the first was not installing an IV, just going the direct vein route, but Hubby thought that is why there was a problem and said something to her so the next day she installed the IV like all the previous nurses had and with the equipment sent to handle the medication. So she had only to put in the Solu Medrol medication for the second and third days.
Here's where it gets curious, my right arm is also bruised and no IV was installed there, and there is also a flaky white colored pearlized bump. My concern is that when I was in the pool Monday and Tuesday I did on my short break weed the planters at the far end of the pool deck, heavily laden with grass from all the rain we have been having, due most likely from seeds spreading in the wind or from birds. I do realize that was way too long ago to be responsible for a spider bite, but that is the only thing I can up with, other than a couple of daddy-long leg spiders we have in the house that I reach down and kill in tissue and flush.
I do see my neuro this week and Hubby suggested I ask while there.
You do know that I was not being unkind about the nurse, but she seemed to have sour grapes saying that she will never be able to retire and that sadly her husband was in a wheel chair due to a freak falling accident crushing his vertebrae in his neck, my heart goes out to her and her family. She also mentioned that she was a breast cancer survivor, brava lady well done.
Every time I hear these things I feel a bit of guilt, but happy too that somehow we had scaled down in time to know that what we had would be enough to live on without too much concern. 
We are truly very lucky.
I only wish that others were too.
On that note of my thoughts out loud, allow me to be the very first to wish all of you a very happy good night and ask you to kindly count all your blessings and share all those overages with you whom and we will too!

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

Saturday, August 15, 2015

Thinking, again

Welcome Cuba!And thank you for welcoming us.
Or not.
Repressing your people is still not cool.
We have many of your past residents enjoying their freedom free will and their ability to be financially rewarded for their positive effects on our country by what they chose to do.
Our opening of relations with you is a bit like perestroika, just like it actually if you take advantage of it: for those of you whom may have forgotten:

"pe·re·stroi·ka

/ˌperəˈstroikə/

noun
  • 1. (in the former Soviet Union) the policy or practice of restructuring or reforming the economic and political system. First proposed by Leonid Brezhnev in 1979 and actively promoted by Mikhail Gorbachev, perestroika originally referred to increased automation and labor efficiency, but came to entail greater awareness of economic markets and the ending of central planning"
  • "glas·nost

    /ˈɡlazˌnōst/

    noun
    • 1. (in the former Soviet Union) the policy or practice of more open consultative government and wider dissemination of information, initiated by leader Mikhail Gorbachev from 1985
    And hopefully glasnost.
  • And wall came tumbling down in 1989; did you know?
  • "The Walls Came Tumbling Down! - Russian Life

    www.russianlife.com/blog/walls-tumbling-down
    Anniversary of the fall of the Berlin Wall and the beginning of Russia's transformation to democracy. ... On November 9, 1989, the wall came down."
  •  So much news that is now history; I thought you might want to know, ya know.
  • Over the years our country has become, in many places bi-lingual and welcoming to most all who come to change their lives legally.
  • Others have been discussed often and our government has been trying hard to solve the volume by which so many wish to become members of our country and might I add not all from yours, but other Spanish speaking places are in that majority.
  • Your culture in particular has blended well with most parts of Florida and we have two cities in particular where Cuban people have acclimated so well, Tampa and Miami and cultural-wise have brought wonderful things to share.
  • Many have continued in their professions, but here get compensated appropriately. 
  • I am an older woman, but still just a child in 1961, eleven years of age, and remember much from the news at that time what had transpired.
  • Please dear men in charge of your country help your people to be their best and prosper or this idea of opening up to the US will be sadly more difficult to all family and friends who did come here and miss your country for to them they felt no choice in leaving their homes there and would love to be able to return, if only for a visit, yes a visit.
  • I do believe they feel our country is theirs too now after all this time, fifty-four years; after all it is a lifetime for many.
  • Be able to put yourself in their place and become understanding.
  • That's all for this to truly work much change is needed and you have that power to change and that would be your legacy to your people.
  • Good night to all and to all be fair and honest to ones true heart, in life that is what counts in the end.
  •  
     

Friday, August 14, 2015

Day 5 off the Solu Medrol IV and...

Aside from a slight dull headache...I'm GOOD! (Not great but better than what I was.)
The thing is that my eyesight is still not back, but as I do know this could take awhile, and to be honest my sight seems to be playing hide and seek with me, because I keep checking by winking, not very scientific but telling; now its clear now its not. But I still also am experiencing eye socket pain like before and my herniated disc has been causing the burning torquing of my right thigh again.Sadly the IV steroids were supposed to be helping all of that too.(...and I am not calling my orthopedic doc; who wants to open up that can of worms, really? I swear I have Pandora's box hidden not too well somewhere around me.)

In the interim I have spoken with a nurse at Shared Solutions, the support company for Copaxone, and also with the pharmacist at Ampyra asking about drug interaction, since the latter is my only new medication from my last IV in April of 2013.
Both have no significant warning drug interactions of mine, although, Ampyra does have side-effects that are not dissimilar to what I had been experiencing, including that it can exacerbate MS. (Again the cure is as nasty as the problem.)
Good to know that; not really.
Now I am just biding my time with this weather due to our UV being an 11 on a scale that goes only to 12!
Sure sunshine is healthful and in moderation gives us all the vitamins that we need, like D, but I suppose I am gun-shy with my recent skin cancer, even though fully removed and not too severe it is true, but some medications just make you more susceptible to burning and ya know I have enough going on so why look for more problems, true? ( I do take calcium with D in vitamin form as per neuro 3x a day. Low D levels are common with MS and you do need to be upped; mine registered 45 with two vitamin pills when 60 is preferable thus the additional one.)
Avoidance is not too difficult, while slathering on sunscreen every forty minutes or so is quite bothersome, really.
So I will be a pseudo vampira, not drinking blood of course, that would be yucky and just plain silly, but in the fact of avoiding sunlight, alrighty now...
So I have become a bum in too many ways again, indoors and lame in the respect of napping for nearly an hour a day, tired from doing not-a-thing, except cooking and laundry and cleaning, I really should do some crafts. I do enjoy looking at Houzz and House Beautiful rooms/decor or any others online and my Coastal Living, Southern Living and This Old House and Better Homes and Gardens Magazines, spider solitaire game, my one and only soap opera: General Hospital, Wheel of Fortune and Jeopardy nightly as well as so many other game and serial TV shows.
To so many of you this might seem very boring, but to me it helps keep me alert and also lets me know I am not completely blind, and my mind does work, sort of... so there! ( I am sticking my adult tongue out at all my naysayers! The rest of you I appreciate your good sense in understanding.)

On that ridiculous ending 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 share all those overages with you know whom and we will too!

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

    

Thursday, August 13, 2015

Our eleventh anniversary of Hurricane Charley! My past rememberings...

Tuesday/Wednesday, August 13, 2013/2014


Anniversary number 9 of a life changing experience...now anniversary number 10, and how quickly they all pass...



Anniversary is annual observation or ritual of a past event, happy or sad.
Today was the ninth anniversary of the devastating event of Hurricane Charley Friday the thirteenth 2004, our ninth.
Below is the experience of that day remembered on the fifth anniversary in 2009.

Friday August 13. 2004
Today is an infamous anniversary; the fifth one of Hurricane Charley, and yes it was a Friday the 13th.
I was trying hard to write for you a time line of what actually occurred here that day, but I must have put quite a bit of it out of my mind since it did create most of us to go into mild shock due to what we experienced that particular day.
Not at all that different from post traumatic stress syndrome I suspect.

What I do remember is watching closely the news and weather reports out of Fort Myers where all of our local information comes from; my Hubby was at work as a deputy, a fairly normal day. We had made somewhat preliminary strapping’s down of things that could fly away, little did we know how stupid that would be, but it was supposed to not come here!

We were told initially that this milder storm not that much over hurricane strength was heading towards Tampa, about one hundred miles north of us, and I suppose this was on the news and weather at noon. I did worry anyway since our eldest son works in Tampa and lives not far from there, to the north about 20 miles.
The storm at this point I do believe was staying the course.
Coming from the Caribbean south of Cuba and was expected to veer towards the Gulf of Mexico where it might pick up speed, and develop into a stronger hurricane in the warmer waters there.

I think it might have been around 2 or 3 O’clock in the afternoon that things began changing for the worse for us. The weather reporters noticed that the storm was shifting direction, and it was heading towards Captiva and Pine Islands, and Fort Myers Beach, which are due west of Fort Myers, but south of us by about forty plus miles. Still in my mind too close for comfort that was enough for me to start to think ahead, and I began listening intensively to the safety procedures that were coming over the TV to get into a space without windows if you had no room that met that criteria get into your hallway and close all the doors, contain pets so they won’t scare and take off. And so I started making our small hallway into a sanctuary for me and the pets. I moved our 25 year old Cockatiel, oddly enough also named Charlie, but a different spelling in his cage in the back of the space, then I took a kitchen chair and got out the cat crate for our seven years old long haired orange Tabby Casey, the hardest part was putting him in it, and then listening to him complain about it, our Skipper was only a five month old puppy at the time and so he was at my mercy and I was able to corral him and attach his lead so I could maintain him in our safety room.
Hubby was a whole other worry, but by now we had been in phone communication and he was busy making sure the county was hunkered down for the possible arrival of the storm by securing the Marine Patrol boats and equipment as well as notifying the public in what to do, and chasing them from harms way.
By the time the storm decided to take a sharp turn towards us, via the harbor, which we are 5 minutes from by boat, I had shut our main power source off and had the battery TV hunkered down with us in our control room, the hallway. I kept hearing from our wonderful son north of Tampa; he was also monitoring the storm and wanted to know how we were doing.
You see we were not that new to hurricanes we had all helped in the aftermath of Hurricane Andrew, a Category 5, back on August the 17.1992, and we were well aware of the devastation a hurricane could commit on a community, we had seen it first hand as well as both of our sons seeing it too.
But this was going to be different since we only went to assist after Andrew, and we actually lived over five and half hours away at that time in Ormond Beach. This time we lived here and it was coming right at us!
And we would be getting an up close and personal first hand knowledge of the horrible devastation it was beginning to seem, but little did we know for sure that this now category 4 hurricane was going for a direct hit on us, we were still hopeful it would miss us, or in denial.

I put up the puppy gate at the opening of the hallway, which allowed me not to have to hold Skipper on his lead the whole time, and it was just in time since something or someone was at the front door…I thought it might be the storm, but I looked out our very large picture window, and it was my hubby coming in! He had to grab tight the door the wind was trying to take it!
He had parked the old army truck they were using to move around the marine boats on our side pad from the driveway, the garage had been secured since the news people told that it should be, and our personal car was in there anyway.

And he did arrive just in time, because within seconds we heard a very loud noise that scared us both I had to grab Hubby for him not to go and check it out; it was instinctive, but I feared for his life.
The wind was rip roaring all around us, and crashes could be heard too, but I was too scared to look and I focused on keeping the animals put. Hubby noticed the guestroom door making vibrations like in the Poltergeist Movie, and he took Skipper's lead and tied it from that doorknob on the guestroom to the bathroom one. At around five thirty, yes it was already that time, everything got deathly quiet. And hubby wanted to go look, but I begged him not to, it must be the eye of the hurricane, we both agreed, and he did take my concerns to heart and waited; all this time we were getting information from the local news, by seven P.M. they were saying we should be in the clear.

Nearly seven P.M. on the dot I stopped hearing most noises, and Hubby and I both agreed that we could venture from the hallway.
What we were about to see was going to change our world in ways that we could not ever believe.

The first thing was since we had drapes on the big picture window I thought that loud noise was something coming through it but thankfully it was not, since our thirty foot oak tree that stood majestically on our front lawn was lying on the ground blocking our way from getting out our front door.
Apparently, the metal stucco encased columns that made up our Spanish style veneer prevented the tree from crashing through that nine foot window!
But did block our exit from that entry way.
The other crash I inspected or maybe hubby was the guestroom; the side window had been smashed to smithereens and glass was all over the bed and the carpet, so I closed the door again so the animals could not go in. The hardest part was to go outside, our screen porch had rain coming in where it met the dinette ceiling, there was water coming from everywhere. Our fairly new wooden floors and carpeting were saturated! But searching around the rest of the house we only had the one broken window, it was a good thing we had installed new windows the year before, but why did that one break? Hubby went outside, and found out the answers to most of our concerns, our octagon Gazebo was gone, our two sheds too, and our next-door neighbors roof was in our backyard, and had hit the guestroom window and was only stopped by knocking our air-conditioner off its pedestal. It was lucky that our neighbors were not home. Our roof was still there but ripped to shreds in many places thus causing the rain indoors.
People from all over the neighborhood started to venture out, and hubby was helped by our other next-door neighbors on the other side tarp our roof. I questioned if I could use the toilet and did not get an answer so I did, and that was a mistake since that giant oak tree pulled the sewer pipe from the ground and all was shooting out into the air! Yuck is an understatement but again neighbors helped to pushed it down and hubby reconnected it. The power was off, our boat on the lift could not be seen or gotten too with all the debris, and it was everywhere, we had, had a sixteen foot arbor down to the water that was no where to be found it did have vegetation on it too. Our backyard oak also keeled over onto the fish pond and surprisingly the fish were fine, as well as the grapefruit tree, but lying on the ground, and the lemon and orange trees were both sheared. I could go on and on as you can see I have remembered so much of it all after all.
We still were alive, and when all was said and done we had, had over 80K dollars worth of damage on our tiny little home!
Thankfully, we have been rebuilt since December of that year, 2004, our insurance took care of our doing the work ourselves, fortunately I was well enough then to help a little, but our son, his girlfriend, my cousins, and another friend from the Arthritis Foundation are hugely responsible for being there when we needed them! We were one of the lucky ones; some still have not rebuilt.

On this long dissertation I will bid you all a good night, and I hope, I really hope that I have given you somewhat of a glimpse into what did transpire on that horrid day here in Charlotte County and in the surrounding communities.

That’s why when I say be safe, I mean it and when I say count those blessing I mean that too! And I do count them all, all of them our blessings that is!

Here’s additional important information from that day, our home’s exterior destruction:


30 foot Oak tree fell down across our front door and driveway just missing Hubby’s patrol car, but the truck was under it!


The picture above is that same oak tree and the sewer pipe that I had no idea was out of the ground, yuck!
And the one below it is showing our side of our home where the guest room window was broken and a portion of our roof damaged over that room, but many points of shearing of the roof was evident from the fact that it rained inside.


The above picture is showing where our sixteen foot arbor was with vegetation over it, and the platform you are seeing was where our Gazebo was, 10X10 octagon latticed shaped with planters in between each opening and a paddle fan in the center. We also had two metal sheds, all gone… our boat was bought new in 2003 and had $4500 dollars worth of damage while on the lift, but all the rubble was hiding it, but thankfully it too was insured and as well as the house that had 80K worth. It took until October to get to start getting our money but we were back in our home by December of that year 2004, since we did most of the work ourselves.

At the time I belonged to a writing group called the Peace River Center for Writers and we eventually all compiled many writings dealing with our experiences of those two summers of multiple historic storms, in fact the book to be birthed from our experiences is called, “ Summer of the Storms”, and I have copied my contributory page from the compilation, which can still be purchased I believe through the center or the historical society, here’s my feelings after all was said and done..


"Formula for a Return to Normalcy
By me, on page #58 in the book entitled, ‘Summer of the Storms’, published by the Peace River Center for Writers copyrighted 2005 all rights reserved
We are in flux, but soon we’ll be able to return to what we remember as home.
Hurricanes have caused all to be in an uncontrollable situation. We must take back that control!
As a state we must reconnoiter all options to regain our strength as a whole entity, train ourselves to be valiant, reclaim what we lost and make it better.
We can network our knowledge and resources.
We can show compassion for one another in this horrid commonality of misfortune.
The old adage is true, misery does love company.
Understanding, first hand, what others have been through gives us something we all can relate to.
A TV show psychologist stated that to cope with such traumas, we must turn emotion into motion. Simply said; do something! Energy should be well spent in a positive productive way. This way we disallow negative thinking to take over.
And yes, we all have plenty to do to accomplish our tangible tasking.
From simple, annoying, repetitive calling of insurance agents and contractors to physically getting in there and doing the work to repair or replace.
Life has never been simple, but with a recipe to regain whatever we consider our normalcy, this unreality too will become familiar, bringing us again to what our lives once were."



I believe all horrendous experience needs to have similar resolves for our sanity to attack these problems with true ability by putting all of it into perspective. We as human beings on this planet have more strength than we sometimes realize, but never ever forget that we do have it!

All I can say is some things in life just stick with you forever the good stuff as well as the bad and this was just another blip in the bigger picture of things that we will never ever forget...

*"PS I see that the excerpt of my page 58 from the Summer of the Storms book did not photograph well, and so I guess you will just have to find it and buy it! LOL!" (This was written last year when I did photograph the book page, but after that I just wrote it in word and copied and pasted it here this year for you to be able to read!)

Wednesday, August 12, 2015

Cold Turkey!

I suppose what is going on after my IV drug use, legal drug use that is, of Solu Medrol, 1gram a day for three days, is the withdrawal from this potent medication.
Little did I recall of only two and half years ago that it was last administered (my fourth time) that this could be the intermediary result before the final feel better action, I hope.
Migraine type headache to a dull ache and back again, with chills to too warm, even sweating, body shocked and confused, to feeling tired to restless, to hungry, yep to very very hungry!
No pool today due to an experiment of trying to see if that I went back in too soon, sun is more pronounced with risidual steroids too, I think.
I do know that my immune system is slightly/ a lot more compromised right now and so leaving home for any adventure is not in my mind's itinerary.
As the days go on my hope is that my patience somehow changes, since I never really had any, patience that is and that I do get some.

I do see my neuro next week, although, when I did get the call back they wanted me to come in this afternoon, I rejected that idea. The thought of traveling an hour in the car right now just seemed counter-productive and truly painful. Then nurse Traci said perhaps my internist who was another suggestion, local and so much closer,  nah too many sick people sneezing coughing and such in their waiting room, not gonna happen.
I chose to try and figure out and contend with this "withdrawal" cold turkey on my own, yep that is most likely what's going on anyway. 
Believe it or not Tylenol was also a possible idea, but with all the heavy duty stuff I am on it did seem almost laughable. Nah, I am toughing it out.
I know to some I might sound a wee bit wimpy, but believe me when I say that none of this is for wimps!   
One bright light on the horizon was my glucose that was down to 91 this morning, fasting, extremely normal. The only reason I took it again was due to the way I felt, all those symptoms, sometimes high glucose can cause all that too, ya know? 

Any-who that is where I stand/lie down now, it is my hope that tomorrow is another day, duh, of course it is and now I do know my options of being seen here or there.

Good night to all and to all have a very happy one; be well and be informed, ya hear!

 

Tuesday, August 11, 2015

Not too good today

Headache like a migraine, chills and too warm all afternoon, very tired.
In and out of bed all day.
Did try the pool and was successful, did full hour, two halves this morning, then all went downhill.
Blood pressure low, temp fluctuates with cold or hot feeling.
Got out the glucose tester, and still 164 two hours after eating, appetite still good, crazy.Eyesight still not there yet, at all...
Waiting to hear back from the neuro's office to help figure out what to do next.
TTYL

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