I had an "episode" last Friday. It is something I had experienced perhaps 2 or 3 times in my life that I can recall. But, never like I did this time. It was early, and I was getting out of my computer chair, and began to yawn.... but then my entire body became "stiff"... like every muscle "locked down" and the more I tried to stretch out, the worse it seemed to be stiff.
I had originally posted my "episode" on Facebook. I've got to get out of the habit of posting there, when I have LOTS to say. I need to post here first, then put only a "bit" on Facebook with a link to my blog.... thus here is the post and more about this "Autoimmune Epilepsy" information I have came into as I did some research... And of course, I am "under the weather"... or not feeling well at all.
I've got some kind of stomach mess going I guess. I was having issues
yesterday with this very strange "yawning" episode ordeal. It's been a
long time since I've had it happen. I would yawn and it was like all of
my "muscles" in my body would almost "lock" as I tried to stretch. I
can't really explain it, but I guess the feeling would almost be like
someone having a "seizure" and all of the muscles get "stiff" and rigid
all at once. That is kind of the "feeling" I have with this. I've had it
happen before but it as has a long time ago. I already was very
fatigued and had a very nauseated stomach early yesterday morning. In
fact I took medication for the nausea before it got bad and got on the
sofa. And I also ran a low grade fever, like around 99.7 to about 99.9
yesterday all day long, had a severe headache, and my neck muscles are
so sore I can barely stand to touch them. Of course every morning when I
first get up, I really can't tell how I feel. My feet always hurt so
badly, I can't hardly stand to walk on them until I have been up and
around for a few hours. Anyway, I think my butt might be back on the
sofa today. I am still not feeling "great" at all. Probably a flare, I
am going to say. Unless the fever was to get higher than what it had
been yesterday, any lower grade fever usually goes with one. And even a
low grade fever will make me feel like hell, and give me a bad headache.
Anyway, I am still pissed because between the pharmacy and my new
insurance they still have my scripts screwed up. I am not sure if either
of them know what the hell they are doing. Plus I am already getting
letters from the stupid insurance co. wanting my doctor to say "why" I
am on one medication rather than what "they" suggest... well in the
first place the 3 they suggested are NSAIDS of which I CANNOT TAKE - due
to my heart and my stomach, plus what I am on is a muscle relaxer, so
why the hell they think a stupid NSAID should be what I am on is beyond
my thinking. I can already see it will be hell getting all of this
through and over with until I get a fill on ALL of my meds and see what
they are going to bitch about, and how many they are going to have the
doctors freaking send a form on. It just gripes my butt they feel they
know "more" than your doctor!
Anyway, the other funny thing that
happened last night! We were watching a movie and all of a sudden my
pup, Bubba started barking. Within about 10 seconds we started hearing
all of this loud popping, banging, and I could see "colors" through my
blinds outside. We ran out the door thinking something was very wrong,
and there were fireworks going off left, right and center, right what
looked like the middle of our town. We live just a stone's throw away
from the main part of town. This went on for about 7 minutes or more.
And it began to appear it was on purpose and professional. Lots of
dollars of fireworks were going up in the air and it was definitely
awesome... except for the smoke trail it left when it was all over with.
About that time, the phone rings and I told Jim I bet it is my Mother!
Sure enough he answered it and she was all in a tizzy thinking this was
happening just a block from her house! LOL!!! Then it dawned on me that I
remembered reading something about the City having a parade etc for our
High School Football team. They won state here about 3 or so weeks ago,
so the city was going to honor them. Sure enough I grabbed the
newspaper, and I was right. That was going on right around that time,
and I guess was the "finale'" when the parade and so forth was over.
OMG, though every neighbor was out, all of Mom's neighbors were all
thinking something horrible was happening. But, I don't think they could
actually see the fireworks like we could. They are just a bit farther
from the main street where it was taking place, plus the trees over
there are so tall, I think most of them were only seeing the smoky trail
it was making as they went off. Anyway, Jim got her settled down and
told her, I had read where they were having that last night, so that is
what was happening.... so far no terrorists were shooting off fireworks
in our town...LOL... guess not really funny since Lord knows where those
freaking nut cases are and what they might do. I think Jim put up the
"front page" of the magazine from France the other day and I told him
that may not be a great idea.... you never know when those totally
insane people might be and what they might do if they find anything to
try and pin on any Americans. We all know they absolutely hate us... and
we would be "extinct" if they had their way.... just insanity.... so if
I am not online much today, it is because I am on the sofa. I just
still feel really "off"... everyone else take care and have a good
Sunday....(here is a bit more on the subject of the parade and my Mom and her ordeal out if it....
This just had to be posted... it is funny, but it is also a realization of age, the quickness of times that things change in this world, and how the elderly get so ether corn
And if either of my KIDS tell on me for telling this story about my Mom,
I will beat your butts... LOL... but Saturday night they had a parade
here in town for our High School Football Team. They won state this
year, and they were celebrating 5 State Championship Wins that we have
had since 1975... well there had been a couple of articles in our daily
paper here about it, and I knew they were going to do the parade. But, I
don't think they mentioned anywhere I could find that they were going
to put on a "huge fireworks" display as soon as it got dark right after
the parade. So Jim and I were watching a movie, and the dogs "heard"
something first, and one of them barked a bit. Then we turned the movie
volume down and sure enough you could hear this loud "popping" noise
almost like gun fire at first. But, we both went outside and saw all of
these fireworks going off near down town. We weren't but about 4 or 5
city blocks away, so we could see it over the trees, and it went on for
at least 10 minutes or so. We still didn't really know why they had went
off, but what did dawn on us, is that it was done "professionally". or
the city would have never allowed it to happen. Well, about the time the
last one went off my phone rang and I told Jim, I bet it is my Mom...
now it still had not really dawned on me about the parade, so neither
one of us really knew why they were going off, but it appeared it was
done "on purpose", not some accident etc... sure enough my Mom was in a
panic... she asked Jim if we heard it and he went in to telling her yes,
we did, and yes we saw all the smoke afterward, and about that time
then it did dawn on me about the Parade for our Football Team. Sure
enough I grabbed the newspaper so I knew that is what it was, even
though they had not mentioned the fireworks. As Jim tried to tell Mom
what the deal was, she got almost pissed and said why would they fire
"fireworks" off right by her house?? And we were puzzled... she thought
due to the smoke and the way it came over town and she never saw the
fireworks at all. She thought they were doing it right around the corner
from her where our old hospital building is.... LOL!!!! Jim was trying
to tell her no, they were down in town around the old building and where
people who used to work at Ennis Business Forms parked on the "parking
lot" right at main street... well she wanted to argue so he just said
"okay" and all is fine... and I was indisposed at the moment in the
bathroom, so I would talk to her the next day. Well, I go over
yesterday, and she said did you see where they were trying to clean all
that mess up in front of the old hospital from that fireworks mess??? I
almost wanted to tell her to shut up about it, but I explained NO!!!!!
it was down by the old Ennis Bus. Forms parking lot, and we saw all of
it. What was in that parking lot of the old hospital is a huge dumpster
full of junk they have taken out of the old building there, and were
using a small bull dozer to dump it into that dumpster... it had NOTHING
to do with the parade or fireworks what so ever... and if she had been
that way all week last week, she would have seen them cleaning up a
bunch of stuff they were hauling out of that building... In fact I had
told her twice last week I saw them cleaning out some stuff and wondered
if someone finally bought that property... the building is in such an
old state and the code violations so many, they really can't "repair"
it, it would be cheaper to tear it down, and then rebuild it, because of
the shape it is in... anyway, she was still so pissed about the
fireworks, and then it was even more funny. I got home, pulled out the
newspaper from last Tuesday, and on the FRONT PAGE... a HUGE ARTICLE
about the PARADE ON SATURDAY NIGHT for the State Win in Football... but I
didn't see anything about the fireworks... so that was kind of an error
because with as many elderly people that we have here and especially
living relatively close to down town, I am sure many that really don't
follow our football team. So with the world in the shape it is in and
all of the stuff going on, I do feel they should have definitely put
something in about the fireworks and made sure that people knew it was
going to happen... like I said we really was not sure at first, until I
recalled something about a parade in the paper, and that is when I put
it all together... but Mom was still just pissed about it all... she
HATES FOOTBALL anyway.... so for her it made no sense at all.... IT was
so funny!!!! Just because she was so adamant that I was nuts and it was
right by her....LOL!!! and as I said MY KIDS BETTER NOT TELL HER I PUT
THIS ON FB!!!
Now
I realize I posted a bit about this a day or two ago... but I didn't
get the entire thing in there, thus I wanted to "repost" it with all of
the "good stuff" in it.... anyone who knew my Mom would totally "get"
why this was so freaking funny... I mean she is getting up in age, and I
know there are often things she just does not "get" anymore... and
maybe never had honestly. But, when I went back over there yesterday and
she was still going on and on about how they should have "never" done
that... and how horrible it was and so forth, I just had to post the
entire conversations.... so take this multiply it by about 100 times and
think of all of the "things" in life, her, like many older citizens
just don't get... computers, "automated teller machines", debit cards,
washing a car at the car wash, driving in the dark, you name it.... it
really at times is almost sad that she is so "frightened" of so much in
life.... here this year in August comes her 80th Birthday... seems
impossible, yet there is still so much that just either scares her
because she has not been exposed to it, or she fears learning anything
new, she absolutely does not even know what kind of batteries go in her
TV remote, and if I finally get her to write them down. and understand
it. Then there is no way she can figure out how to put them in the
proper direction.
It
just seems so terribly wrong to know she struggles with these things,
and without someone right here to help her, there would be a great deal
that just would totally be things she never could do herself, or my
other fear is her getting taken advantage of, if something needs repair
at her house... I have to continually warn her to throw away "junk" mail
- stuff like "insurance" for your water pipes, or people calling her
all the time about trying to "sell" her something, or get her to change
over her "electrical" carrier... they just target and prey on the
elderly people knowing so many of them either don't understand or they
have no one to "watch out" for them.... it is a totally crazy and insane
world we live in. Even myself, especially with some emails, for the
most part I can detect a "spam" or some "trap" email that can reek havoc
with my computer, etc... yet these "spammers" and others that send out
these emails get smarter, more aggressive, yet sloppier all the time.
But when you get something and it may refer to one of your credit cards,
or a company you may do business with, they can almost make you truly
believe it is a "for real" email that is totally critical... so if those
of us who "know" and are wise enough to "smell a rat" per se', yet can
almost be fooled, then people that aren't as educated, or have not grown
up with all we face in the daily realms through this walk of life...
then someone has to try and look out for them... I feel for those that
don't have anyone... we hear all the time how people get "cheated" out
of sometimes their life savings by these bullies out there....
Tuesday, January 20, 2015
Wednesday, January 14, 2015
The Arthritis Foundation - Becoming an "E-Advocate" and How YOUR VOICE DOES MATTER!!! YOU CAN make a DIFFERENCE!!!
As we begin a Brand New Year with New Congress Members of our 114th Congress officially now in. We want to further our cause on the issues surrounding Advocacy for Arthritis - Ra and Osteo, plus Juvenile Arthritis. I would love for you to joint MANY others around our nation in support by being an "E-Advocate" for the Arthritis Foundation. You never have to leave home, and your input can mean SO MUCH when it comes to legislation about health, from medications and the "tier" programs, to making Medicare sustainable, to giving out funding for so much needed research in order to give "a quality of life" back to the hundreds of thousands of women, men and children that suffer from these horrid diseases. I am including a link to the page where you can sign up and also read more about being an "E-Advocate". My emphasis on "YOU MAKING A DIFFERENCE" is critical. Because I used to think probably what you sometimes think "Oh, how can I, one voice make a difference?" Well, I can tell you from personal experience that YOUR VOICE can move mountains. Also, your members of Congress DO HEAR YOU! So, you helping to send your opinions and how you feel on health matters - does matter! I urge you and I know many of you have a "full time" plate, of family, children, jobs, and living, and also many of you are dealing like myself, with chronic illnesses like RA, Osteoarthritis, JRA and many other illnesses very much related to these... whether it be other Autoimmune Illnesses, such as Lupus, Sjogren's, MS, Myasthenia Gravis, MCTD and the hundreds more (I met a woman yesterday who is a lab tech and drew my blood for some lab work - finding out she also has an autoimmune illness - at 25 she suffers from Diabetes 1) ... so "we" are out there... and finding your "niche" where your voice can be heard is an incredible thing to do. I can say without any hesitation that my advocacy with AF, IFAA/IAAM, Lupus Foundation, WEGO Health, my "consumer reviewer" with the DOD I served as last year, my trip to D.C. with the A.F., my work I did with IFAA and all they continue to achieve is just almost mind boggling, my blog, my writing, my Facebook posts, as well as groups... and then illnesses such as FM/CFS/ME (that I continue to feel are all autoimmune related illnesses) .... and so much more... being a judge for WEGO Health Activist Awards, getting to tell my story on Capitol Hill last year and then again a couple of times in the year to my Congressional Representative and my Senators.... and now I would like to further my own Advocacy in my State... I feel it is crucial that we make headway in Texas on a State Level of our Government with these illnesses. It means getting our State Congress on board, and even down to our County and Town people in positions of government, all instrumental in making great things happen when it comes to health care, medications, research, and healing those who truly would love to have another "normal" day in their lives... most of us wished we could gain just a portion of our "quality of life back"... and that in itself would mean the moon and stars to so many of us... as patients, as caretakers, as family, friends and often even our medical providers. They would like to have more options to address our every growing and changing autoimmune illnesses, chronic pain patients, those of us that our joints just deteriorate and often there may not be a "good" explanation as to why... yet they would love to be able to know themselves and to be able to tell patients the "why's" and "how to" fix them. After the numerous surgeries I've been through, more than I can count on BOTH hands... I can say, that the thought of having to undergo another surgery honestly scares the hell out of me... even the idea of being ill enough that I may need to be hospitalized terrifies me. Each night I pray that I will NOT be ill, especially never again so ill, I must undergo a hospital stay. After knowing what I know, and then watching an hour documentary just yesterday, on just how many "Superbugs" there are just lingering around every nook and cranny of a hospital, it terrifies the hell out of me.... With an already very compromised immune system... with illness, and then even more compromised due to medications, the idea of going into the hospital already ill, and hoping I don't become even worse in there than before I went in... just puts me in a place of mortal terror. The last bout I had with double pneumonia, and had a fever so high for me at 103 degrees that I was literally hallucinating, could not type, could not walk straight, could not see... and if I had not finally figured out to check my temperature, at the time Jim was still in the hospital, so alone it really didn't dawn on me.... then seeing how high my temp was, and in so bad of shape I did not even trust myself to drive alone.... it really was yet another eye opening experience for me. I got by the "skin of my teeth" from being hospitalized. Because my temp was not going down initially even with Aspirin, Tylenol, and so forth... and having it in both lungs... I convinced the physician at the Urgent Care (he also is an ER doctor at our local hospital) and I knew him... to allow me to go home first, and see how I was in 24 hours with medications... he still was almost to the point of sending me via ambulance to the ER... but I swore to follow his rules, and if the fever got any higher, or I became more ill, I would immediately dial 911 and go to the ER... thus I avoided that one. But, here I am already a compromised immune system, Jim had then been in the hospital about 3 weeks out from the accident... he still was so out of it, he was not able to truly grasp the idea that I was so ill I could not at all come up to see him... and for a full 10 days, I stayed HOME, on the sofa, taking my meds and doing exactly as the doctor told me. The very last place in the world I needed to be was in the hospital myself. So, as I tell my own dilemma from 2014, my point is that STILL when I could even through the entire ordeal with Jim's accident, my own illnesses, then the whole situation with the Sjogren's and my teeth literally falling out weekly, then getting Jim home, to proper doctors, getting medications, finding how the hell to survive the ever growing costs of meds, doctors, since there is NOTHING to pay any of it but us.... to my own issues with all of the dental bills also NOT COVERED... and fighting (no pun intended) tooth and nail for Humana to freaking pay... IT WAS AN ILLNESS that TOTALED MY TEETH, not a "DENTAL" problem... and the vicious cycle and circle carries on. So MY FIGHT is the "good fight" for ALL of us... it is time to put the USA on the World MAP as being a "premier" nation that DOES FIND CURES or WAYS TO PUT THESE HORRENDOUS ILLNESSES INTO REMISSION... to stop the damage they cause.... and we NEED YOU... and your voice also.....
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| http://www.arthritis.org/advocate/join-the-movement/sign-up-to-be-an-e-advocate.php# |
Sunday, January 11, 2015
Advocacy Summit | Arthritis Foundation
I have already put this in my blog! But wanted to post again... This is such a huge honor and privilege and I am so psyched!!!!
Advocacy Summit | Arthritis Foundation
And then "the Juvenile Arthritis Camp" for 2015 -
http://www.kidsgetarthritistoo.org/meet-other-families/2015-juvenile-arthritis-conference/2015-ja-conference.php
Advocacy Summit | Arthritis Foundation
And then "the Juvenile Arthritis Camp" for 2015 -
Having A Life of Chronic Pain & Living It is no "Piece of Cake" - not even in the movie...
After watching the trailer of this movie, reading about it, hearing what Jennifer Aniston said about it in her own words, then to see that Ann Palmer the President and CEO of the Arthritis Foundation is not just endorsing the movie, she actually attended a "preliminary get together" about the film with Jennifer Aniston, Stacey Courtney, the stunt coordinator in the movie, that took place in LA, when the limited screening of the Film came out on Jan 6th. Aniston talked about things she prepared herself for in order to make the movie, which included gaining a bit of weight, not exercising and going without makeup in order to "get into" the character role. Stacey, that was like a mentor to Jennifer had also been in an accident that left her with chronic pain, so she was able to help the movie portray a great deal of the "real" life of those of us dealing with chronic illnesses, diseases, and chronic pain....
Here is the URL to the information about the movie, which is presented on the AF website: http://www.arthritis.org/cake/
I feel that this movie, will move many of us into tears... for "we" are going to know the all too familiar events that take place. I've heard she fits the part very well, and through herself into the character, by doing things or not doing things, that we also totally understand. Many of us find there is not enough energy or spoons, of whatever you use to talk about the amount of energy you have for any one given day... most of the time doing makeup and hair... get left off the days events because we know if we do some of that, the energy we need for other errands, doctors appointments, groceries... or going out with our friends and family. I am truly anxious to see this, and now after Ms. Palmer from the AF is also announcing it on the AF site, I found it even more intriguing.
I believe the public opening is officially around January 28th or so... I just hope it does portray a very detailed and accurate view to others, caretakers, family, friends, and even strangers as to why we truly in our everyday lives live with. You can explain and explain, yet at times unless that person is also not able to understand all of the rawness, the vunerable ways we all too often feel when the pain beats us down so much, that it is difficult to think about another day of feeling like you do. It seems EVEN WITH the PAIN PUMP, the "breakthrough pain medications", muscle relaxers and everything else we ingest, or do, from exercise, to aromatherapy... to going to the Chiropracter, to acupuncture... creams, salves, lotions, you name it to find some kind of relief from the moment to moment night mare of ongoing pain.
http://www.arthritis.org/about-us/news-and-updates/cake-a-painful-slice-of-life.php
Here is the URL to the information about the movie, which is presented on the AF website: http://www.arthritis.org/cake/
I feel that this movie, will move many of us into tears... for "we" are going to know the all too familiar events that take place. I've heard she fits the part very well, and through herself into the character, by doing things or not doing things, that we also totally understand. Many of us find there is not enough energy or spoons, of whatever you use to talk about the amount of energy you have for any one given day... most of the time doing makeup and hair... get left off the days events because we know if we do some of that, the energy we need for other errands, doctors appointments, groceries... or going out with our friends and family. I am truly anxious to see this, and now after Ms. Palmer from the AF is also announcing it on the AF site, I found it even more intriguing.
I believe the public opening is officially around January 28th or so... I just hope it does portray a very detailed and accurate view to others, caretakers, family, friends, and even strangers as to why we truly in our everyday lives live with. You can explain and explain, yet at times unless that person is also not able to understand all of the rawness, the vunerable ways we all too often feel when the pain beats us down so much, that it is difficult to think about another day of feeling like you do. It seems EVEN WITH the PAIN PUMP, the "breakthrough pain medications", muscle relaxers and everything else we ingest, or do, from exercise, to aromatherapy... to going to the Chiropracter, to acupuncture... creams, salves, lotions, you name it to find some kind of relief from the moment to moment night mare of ongoing pain.
http://www.arthritis.org/about-us/news-and-updates/cake-a-painful-slice-of-life.php
Finding a starting point or possibly a stopping point... OR maybe there is no point at all... All in a day of Autoimmune Illness
I've been able to allow words to just pour out of my soul on Facebook, and here in the past week or so. Yet, when I put myself back in "alignment" to begin working on my book, again I lose all of the hope I've had to begin...
It is not that I haven't began... Gosh I've probably written enough for 2 or 3 books. Between here, Facebook, and other places I post in detail all types of my own personal experiences with these hideous illnesses and maladies, to the some times irreparable dealings of some medications, and the problems they can cause... and moreover what is so very frightening I have came to the conclusion that there is something else physically going on with me, that the doctors, tests, lab work, and so forth have not been able to pinpoint yet.
As I've said now for awhile, either there is much more to my health issues that need to be looked at. I realize that many of the symptoms of any of the autoimmune illnesses can really be "overlapping" in nature. It is a defining moment in any life when a physician can give you a "real name" for a certain symptom, or chronic illness. At times the answers are truly vague at best... and the chances of getting a proper diagnosis at the very first trip you make.
So, now the question is, how do I go about trying to find if there is something else wrong, if so what doctor do I consult, and what will happen if there is another AI involved, like MS, MG (myasthenia gravis), and so on? More than likely, unless it is MS, they have came up with some great meds for it, BUT some of them are already things I am taking, or they are so new and so expensive, my insurance would probably turn the noses up and drowned in the rain, if I was prescribed one. You can believe, if it can happen, or will happen, or has happened ... then it has been with me.
I am seriously debating where I go this year on my blog... and if I want to continue to grow my audience then it is imperative that I work it and work well. I don't want to lose who I have and of course I want those that are already coming here to be excited about the new year and what I am going to say... and how I am going to say it.....
So, bear with me, as I take my own heart felt words, and pour them out in different ways. I am trying to experiment on my blog, so I can have a better understanding of writing my 3rd book.
More often that not, (and I just had an idea today, that I think I am actually very seriously considering) it is bad enough for the "same of stuff, day after day, to step into your path of consciousness. Those types of things tend to cause a huge road block for those of us who already suffer from massive brain fogs at times anyway. Then to try and work around all of it, and have something come out that maybe worth another persons time to read is a monumental task.... so right now, I only know to crawl up the side of this mountain and begin the book.
It is not that I haven't began... Gosh I've probably written enough for 2 or 3 books. Between here, Facebook, and other places I post in detail all types of my own personal experiences with these hideous illnesses and maladies, to the some times irreparable dealings of some medications, and the problems they can cause... and moreover what is so very frightening I have came to the conclusion that there is something else physically going on with me, that the doctors, tests, lab work, and so forth have not been able to pinpoint yet.
As I've said now for awhile, either there is much more to my health issues that need to be looked at. I realize that many of the symptoms of any of the autoimmune illnesses can really be "overlapping" in nature. It is a defining moment in any life when a physician can give you a "real name" for a certain symptom, or chronic illness. At times the answers are truly vague at best... and the chances of getting a proper diagnosis at the very first trip you make.
So, now the question is, how do I go about trying to find if there is something else wrong, if so what doctor do I consult, and what will happen if there is another AI involved, like MS, MG (myasthenia gravis), and so on? More than likely, unless it is MS, they have came up with some great meds for it, BUT some of them are already things I am taking, or they are so new and so expensive, my insurance would probably turn the noses up and drowned in the rain, if I was prescribed one. You can believe, if it can happen, or will happen, or has happened ... then it has been with me.
I am seriously debating where I go this year on my blog... and if I want to continue to grow my audience then it is imperative that I work it and work well. I don't want to lose who I have and of course I want those that are already coming here to be excited about the new year and what I am going to say... and how I am going to say it.....
So, bear with me, as I take my own heart felt words, and pour them out in different ways. I am trying to experiment on my blog, so I can have a better understanding of writing my 3rd book.
More often that not, (and I just had an idea today, that I think I am actually very seriously considering) it is bad enough for the "same of stuff, day after day, to step into your path of consciousness. Those types of things tend to cause a huge road block for those of us who already suffer from massive brain fogs at times anyway. Then to try and work around all of it, and have something come out that maybe worth another persons time to read is a monumental task.... so right now, I only know to crawl up the side of this mountain and begin the book.
Old Enough to be a "Grandparent or maybe even a Great Grand Parent" and having babies??? PLease someone explain!?
Okay, maybe this is just me, but, I was reading an article out of my AARP magazine and it was talking about women OVER the AGE of 50!, I am talking about one woman who is 60 years old... having KIDS!!! They are waiting until they have made a half century here on the planet, then go in, have IVF and not only have 1 child, but often have TWINS!!!! Now, I do know my Dad was the "baby" of the family. He had 9 older brothers and sisters, some of them half brothers and sisters, and his Mom had him fairly late in her life. I am thinking she may have been in her 50's. Back then, in the 1st place, my Dad's father, outlived two wives. The 3rd one also was a widow, and had lost her husband, and her and my Grandfather had been friends when they were very young. My Grandfather left Tennessee, was here in TX, and lost two wives. Somehow he went back to Tennessee for a visit or something, and met up with this lady, that he had known back in their teens and 20's... She also was a widow... and had lost her husband. So, when Dad was born, his Mom was already well into her 50's early I would say, and my Grandfather was over 60.
My Dad and a couple of his brothers came along after the both of them had other kids by other marriages, so they were spread apart somewhat as far as age.
But, in the days to read that a woman decides either she wants a kid, gets married, and then discover they want a baby!!!!!! At 55, 60 years old??? Are you kidding me???
I am continually telling my daughter who is now 30 herself that newborns are for the younger generation. Most people over 50 years old, first of all may not have the health needed, or could have severe complications during birth, for the baby or Mom, or both. There are just so many things to take into consideration... and then the nights of no sleep, or very little, babies with colic, and my nerves are already grated down to a very fine thin line, how the heck does a woman in their
50 years plus have enough of anything to make a little child have a great life...
I know there are exceptions to every rule. And there are some women that are up in age, that could conceivably be able to carry a child full term, no complications, and delivery a healthy baby. But, think about the years a woman has been through and all of the changes that our body's go through. From the time we are very young, hormones begin to evolve and we step from one phase of our lives into another one it seems with each decade. In our teen's we are almost too young for having children. Then in our 20's through about 32 or so, most likely is the time our own bodies can take the carrying of a baby, the delivery, and all of the changes we go through after delivery. It is not an easy task for any woman, no matter what age, plus no matter how well and easy the pregnancy goes. It still takes its toll on us, physically, mentally, emotionally, and energy wise. Then we live usually for at least the first 15 years of that child's life in an emotional "thunderstorm" of worry, resolve, hoping, praying, and trying to keep our kids safe, happy and healthy. Even after they are graduated from High School, and either make their way out to spread their wings and soar to A and M like some of my friends in high school were very fortunate that they did get grants, to help along with college tuition and so forth. Even when our kids leave home, marry, go to work, and have their own kids, it is just more like we are continuing to "walk them through" the years of their lives...
Thus the notion that I felt lousy for one reason or the other, and I went into a doctor at 45 or more years old, and he told me I was expecting... I would either faint, kick his butt, or kick my own... or tell him it had to be an Immaculate Conception HAHAHAHAHA.... as for myself, I had my tubes burned, severed. separated and all the "works" at 35 taken out to a more than partial hysterectomy. I did not want to take any chances on birth control failure when I had two kids, a boy and a girl... already fairly well grown, and headed out of their own.
The very last thing I ever wanted to even imagine was something go "south" and find out I was expecting...
Needless to say, I didn't know whether to laugh, cry, both, run screaming, or tell someone at AARP those women needed a good look at the funny farm... because they had lost their minds.... ;)
By the way, there is a new thing AARP... if you are a member, and enjoy the perks... I know one of mine is being hooked into Walgreens. I do get a great deal extra points at times, there are other things like discounts and so forth it provides. Now the latest thing they have on their site, is where you can do these small "trivial" games. Some of them are quite entertaining, plus I learned some things I didn't know. So, I appreciated that little factoid.
So, go to the main AARP website, and on the front page there will be a link to it. I have already about 6,000 or more points accumulated.. you can use them for discounts on trips, eating out, gift cards, flowers, shopping, motels, and so on.
I will warn you they are a it "addicting".... I started off with a couple of them, then found myself wanting to learn more, so I was playing more of those than I intended to....
My Dad and a couple of his brothers came along after the both of them had other kids by other marriages, so they were spread apart somewhat as far as age.
But, in the days to read that a woman decides either she wants a kid, gets married, and then discover they want a baby!!!!!! At 55, 60 years old??? Are you kidding me???
I am continually telling my daughter who is now 30 herself that newborns are for the younger generation. Most people over 50 years old, first of all may not have the health needed, or could have severe complications during birth, for the baby or Mom, or both. There are just so many things to take into consideration... and then the nights of no sleep, or very little, babies with colic, and my nerves are already grated down to a very fine thin line, how the heck does a woman in their
50 years plus have enough of anything to make a little child have a great life...
I know there are exceptions to every rule. And there are some women that are up in age, that could conceivably be able to carry a child full term, no complications, and delivery a healthy baby. But, think about the years a woman has been through and all of the changes that our body's go through. From the time we are very young, hormones begin to evolve and we step from one phase of our lives into another one it seems with each decade. In our teen's we are almost too young for having children. Then in our 20's through about 32 or so, most likely is the time our own bodies can take the carrying of a baby, the delivery, and all of the changes we go through after delivery. It is not an easy task for any woman, no matter what age, plus no matter how well and easy the pregnancy goes. It still takes its toll on us, physically, mentally, emotionally, and energy wise. Then we live usually for at least the first 15 years of that child's life in an emotional "thunderstorm" of worry, resolve, hoping, praying, and trying to keep our kids safe, happy and healthy. Even after they are graduated from High School, and either make their way out to spread their wings and soar to A and M like some of my friends in high school were very fortunate that they did get grants, to help along with college tuition and so forth. Even when our kids leave home, marry, go to work, and have their own kids, it is just more like we are continuing to "walk them through" the years of their lives...
Thus the notion that I felt lousy for one reason or the other, and I went into a doctor at 45 or more years old, and he told me I was expecting... I would either faint, kick his butt, or kick my own... or tell him it had to be an Immaculate Conception HAHAHAHAHA.... as for myself, I had my tubes burned, severed. separated and all the "works" at 35 taken out to a more than partial hysterectomy. I did not want to take any chances on birth control failure when I had two kids, a boy and a girl... already fairly well grown, and headed out of their own.
The very last thing I ever wanted to even imagine was something go "south" and find out I was expecting...
Needless to say, I didn't know whether to laugh, cry, both, run screaming, or tell someone at AARP those women needed a good look at the funny farm... because they had lost their minds.... ;)
By the way, there is a new thing AARP... if you are a member, and enjoy the perks... I know one of mine is being hooked into Walgreens. I do get a great deal extra points at times, there are other things like discounts and so forth it provides. Now the latest thing they have on their site, is where you can do these small "trivial" games. Some of them are quite entertaining, plus I learned some things I didn't know. So, I appreciated that little factoid.
So, go to the main AARP website, and on the front page there will be a link to it. I have already about 6,000 or more points accumulated.. you can use them for discounts on trips, eating out, gift cards, flowers, shopping, motels, and so on.
I will warn you they are a it "addicting".... I started off with a couple of them, then found myself wanting to learn more, so I was playing more of those than I intended to....
Friday, January 9, 2015
An Article About Chronic Pain - How Horrible weather can be on those with chronic pain, joint problems, and chronic illnesses that effect joints, bones, and more
Great Article about "chronic pain" especially joint pain and the
weather. I know for myself, that like yesterday, the very sudden huge
drop in temp - from about 50 to 18 degrees yesterday a.m. sent me into
one of the worst days of my life with pain. Ironically we were going to
my pain doctor, BUT he was seeing Jim yesterday, not me. I wanted so
badly to tell him that I could sit in the floor and scream, I hurt so
badly, but I knew the appointment was not "about me", thus he knew by
looking at me I was hurting... anyway, I had a headache that is one of
the worst I've ever had even from years back with my migraines, and
NOTHING would stop it. Believe me I tried everything I could think of.
Then my neck was so stiff I could literally NOT turn my head to see over
my shoulders while driving. I had to turn my whole body and use mirror.
Then my lower back hurt so much, I honestly thought I had kidney
stones. And my legs, ankles, feet, wrists, and my thumbs were so
terribly bad, I felt they were stiff, and just was not able to move them
without horrid pain. Now, the weather I KNOW "in my bones" (no pun
intended) has effected me for years and years. Even when I would have
migraines in my 20's and 30's the dramatic weather change could bring
them on almost every time. No one quite believed me, and then when I
began to see my Orthopedic Surgeon and he did all of the joint
replacement and surgeries on me, he totally agreed the weather would
absolutely effect pain, especially joint pain. Even the "phantom" knee
pain I get with my knees, that seems like I never even had them replaced
will come on with a vengeance when we experience storms and so forth.
So, let not anyone make you think you are crazy, when your pain is worse
in weather fluctuations. I think it is definitely so. Yesterday was
living proof for me. But, I am also hurting today, so far not quite as
badly as yesterday, but I can tell if i were to get up and really start
moving around I would be in a world of hurt... which sucks. Because I
have to get out today cold, bitter weather or not, and pick up scripts
both of us have had filled. The visit with my pain doctor for Jim went
well yesterday. Finally someone that will work with him. But of course
this is ALL coming out of our pockets, and everyone knows office visits
and medications are NOT cheap. I dread picking his up, and then this is
my first time having anything filled since I had the new insurance start
on the 1st. So, I hope the hell I don't have major issues with United
Health and my MAP... I will be so pissed if I start having hell getting
meds etc paid for. That is why I dreaded the change from Humana so much
and just put it off the last two years. But, more and more of my
physicians were dropping Humana, even my PCP, thus I decided to change
over to United Health... is it a "Secure Horizons" AARP endorsed
Medicare Advantage Plan. This one hopefully will not be too difficult,
because I am already established and have been for years with all of my
physicians. So, they assured me since I've been on the meds, and have
been seeing these doctors for years things should go fairly smoothly
with the transition. I will believe it, when I go today and try to pick
up the scripts.....
Talking About "Good RX" card for prescriptions....
http://www.goodrx.com/
I can guarantee ALL of you that either do not have insurance for prescriptions, or need an extra amount off of your meds... I have used this twice for Jim's meds since we have NO coverage for him, and the meds even though "generic" are ALL expensive. There is no way we could pay full price on them. Well, I got hold of this URL and found "GoodRX" through a Google search. I can say that it is TOTALLY worth using. You can use it in just about any pharmacy... all of our local pharmacies take it and you get a better discount in some than others. But, you can look up all of the prices at different locations right on their website, so you know just about the cost before you even go to try and have them filled. We have well over 200.00 or possibly more in costs for 4 of his scripts and 3 of them came out to 69.00 rather than 150.00 or more. You can either just pull the coupons or copy of the card online and print it and they will also send you a regular card if you wish and request it. Unlike some of the ones that save you a bit here and there, this one truly so far has been a life saver for us. Between having to fork out the cash for a damned expensive pain doctor in which he has to go MONTHLY... and then medications that even in generic can be out of the bounds of reasons, I have been as pleased as it is possible to be pleased when having to spit out money you really don't have. But, there is not much choice... we either pay for it out of our pockets, or he just does not go, and does not have any meds either... so neither are very good - so you choose the lesser of the both evils, as my doctor has said about prednisone... I can either "take it" and it help with the horrid pain and symptoms of these autoimmune diseases and then know I will also have to contend with the crappy side effects, OR I can NOT take the prednisone and then suffer like hell... so it is the "lesser" of two evils.... anyway, this has been 2 days from mortal hell... actually all week dammit... Mom's phone is out and I've had to put in two work orders, then I took her a cell phone, that of course she has hell using... and I found the problem, it is an almost complete break in a line outside that is weather cracked, and worn almost through... and then they tried to do an "automated" call and ask if she was satisfied with the service... HELL what service???? They had not fixed a thing when I was there yesterday or today yet... anyway, then of course the weather sucks big time here... it is bitter COLD, and going to be several days along with the possibility of sleet etc... not a good thing for no driving idiots here... then Jim doctors appt and the meds thing... THEN I GO to MY pharmacy (this is after calling and emailing) them my new insurance information. Then I even TOOK THE CARD BY YESTERDAY! and they said they would "rerun" everything through. I go in today expecting issues for some reason and of course 3 SCRIPTS NOT RAN THROUGH THE NEW INSURANCE! SO, THEY are trying to collect 44.00!!! rather than 7.30!!! So, I had to wait for them to do what I had already told them about 4 times in the past 2 days! I get home and another script I had called in this morning, they STILL tried after I had been there TO RUN IT through the old insurance!!! OMG!!! I was livid.... and then I had to run errands, pick up stuff as far as for a couple of days just in case the weather gets really ugly.... and I ruined my entire day, almost yesterday and today... running around like a chicken with its head cut off with errands and crap. So, it got me off track with my writing and ALL I WANTED to accomplish over this past couple of days. I swear if anything tries to get in my way this weekend to keep me from doing WHAT I intend on doing, I am going to scream very loudly... plus since the weather changed I hurt so badly it is a scale WAY OVER 10!!! More like 17 .... everything on me hurts... I have actually thought that I was coming down with something else... the pain is unbearable even with my meds.... it sucks and now honestly, I am thinking the Orencia is NOT helping the RA at all... I hate to say that, but I think I am going to have to face the fact, that it may not be "the one" for me... and I hate that... the very last thing I want to do is try yet another biologic! Every time it is like starting all over again.... and it sucks... and many of you know that....
Talking About "Good RX" card for prescriptions....
http://www.goodrx.com/
I can guarantee ALL of you that either do not have insurance for prescriptions, or need an extra amount off of your meds... I have used this twice for Jim's meds since we have NO coverage for him, and the meds even though "generic" are ALL expensive. There is no way we could pay full price on them. Well, I got hold of this URL and found "GoodRX" through a Google search. I can say that it is TOTALLY worth using. You can use it in just about any pharmacy... all of our local pharmacies take it and you get a better discount in some than others. But, you can look up all of the prices at different locations right on their website, so you know just about the cost before you even go to try and have them filled. We have well over 200.00 or possibly more in costs for 4 of his scripts and 3 of them came out to 69.00 rather than 150.00 or more. You can either just pull the coupons or copy of the card online and print it and they will also send you a regular card if you wish and request it. Unlike some of the ones that save you a bit here and there, this one truly so far has been a life saver for us. Between having to fork out the cash for a damned expensive pain doctor in which he has to go MONTHLY... and then medications that even in generic can be out of the bounds of reasons, I have been as pleased as it is possible to be pleased when having to spit out money you really don't have. But, there is not much choice... we either pay for it out of our pockets, or he just does not go, and does not have any meds either... so neither are very good - so you choose the lesser of the both evils, as my doctor has said about prednisone... I can either "take it" and it help with the horrid pain and symptoms of these autoimmune diseases and then know I will also have to contend with the crappy side effects, OR I can NOT take the prednisone and then suffer like hell... so it is the "lesser" of two evils.... anyway, this has been 2 days from mortal hell... actually all week dammit... Mom's phone is out and I've had to put in two work orders, then I took her a cell phone, that of course she has hell using... and I found the problem, it is an almost complete break in a line outside that is weather cracked, and worn almost through... and then they tried to do an "automated" call and ask if she was satisfied with the service... HELL what service???? They had not fixed a thing when I was there yesterday or today yet... anyway, then of course the weather sucks big time here... it is bitter COLD, and going to be several days along with the possibility of sleet etc... not a good thing for no driving idiots here... then Jim doctors appt and the meds thing... THEN I GO to MY pharmacy (this is after calling and emailing) them my new insurance information. Then I even TOOK THE CARD BY YESTERDAY! and they said they would "rerun" everything through. I go in today expecting issues for some reason and of course 3 SCRIPTS NOT RAN THROUGH THE NEW INSURANCE! SO, THEY are trying to collect 44.00!!! rather than 7.30!!! So, I had to wait for them to do what I had already told them about 4 times in the past 2 days! I get home and another script I had called in this morning, they STILL tried after I had been there TO RUN IT through the old insurance!!! OMG!!! I was livid.... and then I had to run errands, pick up stuff as far as for a couple of days just in case the weather gets really ugly.... and I ruined my entire day, almost yesterday and today... running around like a chicken with its head cut off with errands and crap. So, it got me off track with my writing and ALL I WANTED to accomplish over this past couple of days. I swear if anything tries to get in my way this weekend to keep me from doing WHAT I intend on doing, I am going to scream very loudly... plus since the weather changed I hurt so badly it is a scale WAY OVER 10!!! More like 17 .... everything on me hurts... I have actually thought that I was coming down with something else... the pain is unbearable even with my meds.... it sucks and now honestly, I am thinking the Orencia is NOT helping the RA at all... I hate to say that, but I think I am going to have to face the fact, that it may not be "the one" for me... and I hate that... the very last thing I want to do is try yet another biologic! Every time it is like starting all over again.... and it sucks... and many of you know that....
Wednesday, January 7, 2015
Anticipating the 2015 Arthritis Foundation Annual "Summit on the Hill"!
A dear friend of mine that I met in fact at last years Annual Summit on the Hill by the Arthritis Foundation had posted and asked me if I had filled out my "Travel Award". Well, yes I have, and as I told her, I had made "Platinum Ambassador" thus I believed it was my "obligation" to come to the Summit. Of course I would try to go whether I had made that or not. My entire world evolved around that Summit last year in March. I had in fact "won" a Travel Award, after putting my application in at the very last moment. I felt I had probably missed out since I was so late in even knowing about being able to go by getting a "Travel Award". So, by the time I filled out my paperwork and emailed it in, I feared I would be too late. But, within a few days, I received a "glowing email" that I had in fact been granted a Travel Award to D.C. for the Summit that took place and does take place each year around the 24th through about the 26th of March. I will never forget how much I got out of the Summit even being my very first time there, and just how much more I wanted to be a "better voice"... activist, advocate, blogger, writer, and then I wanted of course to be an Ambassador for the AF. I was not sure I would be able to get enough advocacy work in to make "Platinum" especially after my husbands accident, but I was SURE I would give it all I could in between everything that took place for those months following that fateful day in March. I've played it over and over in my mind. I have spoken about it numerous times online, and in person. I've written about it, blogged about it, and still to this day, at times it feels almost surreal.
It is almost impossible to believe all that happened at that time did. What is more impossible to believe is that the entire ordeal with the wreck that Jim went through, the months of hospital and rehab after that, and then months of outpatient rehab, the red tape that still goes on and on with the lawyer, and all of the fighting we have done to get him into physicians etc... it is truly a night mare. Maybe that is truly why I have night terrors almost every night of my life. There are not many nights that I don't wake up and I cannot breathe. I am "suffocating" in one way or the other in the night terror, but I am also in real life having massive problems breathing. Most nights I am up, trying half asleep, half awake and still almost in a dream like state trying to find my inhaler and the nasal spray, so I can once again breathe. It is crazy insane, but it is so very, very true.
I've done a good bit of research on night terrors, and of course the amount of stress from the accident in itself is enough to send me into a frenzy. When you add in my own health problems, and the fact that I have had to endure a great deal of my own pain once again, and the entire situation with my teeth, or no teeth now, the full set of dentures... of which the bottoms STILL will NOT stay in place, thus I am still not eating as I should, and by the end of the day, I just want to take the damned things out and throw them across the lawn into the street and say to hell with all of it. Of course the issue of also having "complications" which for me, what is new, yet they always seem to surprise me... of which involves my sinus cavity on the right side... and it is the maxillary sinus passage, which I have already been told, that I need to have repaired, I am sure has sometimes a great deal of reasoning behind my night mare like breathing problems. But, when you are facing another 7,000.00 PLUS out of pocket since you can't get a damned dental plan worth a flip, OR as this should be paid by regular Health Insurance, because a "chronic HEALTH Illness" is what caused me to lose my teeth in the first place should pay a portion of it. But, I have fought "tooth and nail" (no pun intended)... and I have just gotten way too weary to fight them anymore about paying any of it. Of course now, I changed insurance on January 1, thus you can believe that makes it entirely impossible to get either one of them to pay a dime ....
There is "after the fact of me already being out thousands" a "non-profit" that is for dental issues, mainly caused from autoimmune illnesses or cancer patients. But, there are way too many people needing the help versus the dentists and oral surgeons that will try and help out of generosity and not expecting either to have lots of people that will help.
Baylor dental college in Dallas also has certain things students do, while the professors and doctors watch, but you will much pay like 278.00 just to walk in the door. Then the 78.00 is a "fee" non-refundable, and the 200.00 is to apply towards care you are given, or if they can't help you then you get the 200.00 back. I know I went there to have my 4 wisdom teeth cut out all at once. In fact I was newly married, and my Dad drove me up there and home. I looked like a chipmunk with a full mouth of acorns for over a week. But, they charged a great deal less that having that done in a regular oral surgeons office.
As I leave behind so much "sadness" and "darkness" from 2014, I am trying my best to hold onto 2015 being a positive year, full of prosperity, not just financially, but more in the "domain" if you will, of getting things accomplished. I am trying to stay as far away as I can of thinking about all that took place in 2014, trying to look as each day a new one, that can mean much more as far as my writing, my advocacy, my activism, not only online, through my blog and writing, but I hope to be more involved in trying to find a way for my entire community of Ennis and Ellis County to become knowledgeable about the Autoimmune Illnesses, their symptoms, their lack of being able to be diagnosed, and to educate those that are surrounding me day in and day out right here, even as next door neighbors. I've come to see as of late, that there are MANY people that have some type of AI disease, FM, CFS/ME, Chronic Pain, right here that I could help, if given some assistance on how to go about starting an "awareness campaign" locally. We are SO LACKING in the understanding of Lupus, RA, Sjogren's (boy this one we REALLY NEED some understanding on), and MS... Raynaud's, Diabetes 2, autoimmune arthritis, autoimmune psoriatic arthritis... and the list goes on and on.
In fact, just about the time I was finally "diagnosed" with first MTCD & UCTD.. that turned into RA, Lupus, and the Sjogren's and Raynaud's was showing immediately when the MCTD first became the "name" of what was going on with me. There were two gentlemen (which is rare in the first place for men to have AI illnesses) both of them around the same age, both going to the church we were going to at that time, and both had Grave's Disease. What makes it even more unusual is men for the most part don't have "thyroid" issues either. Usually women have more of a propensity to have any or all of these illnesses and disorders.
So, right there being in a Church, with two guys, both almost the same age, both having Grave's disease was enough for me to absolutely know we had a much larger group of people with autoimmune illnesses. Both of then underwent treatment and both were "cured"... put into remission. My understanding is that once Grave's disease is in remission, that is permanent. Unlike many of the other AI illnesses, they "can" go into remission, but more than likely you will undergo swings of "active" disease symptoms, and then inactivity, yet there are no real "cures" for any of them.
That is why for me, I really would like to find a way, with the help of some of our community leaders, to get a group, or some type of monthly, weekly, however... crowd in a "face to face" type of environment to help them further their knowledge about their own, friends, or loved ones AI illnesses. I also would love to help people and physicians in "learning" how to talk about these diseases, along with how to talk about medications, side effects, long term "goals" or what to expect from having an AI or more than one, and what that will do in the years to come. Will more medication be needed, will hopefully there be more research, and possibly medications coming out? All of the questions that either patients themselves feel it is "wrong" to ask, or for the doctors who honestly are not as well versed on these illnesses, and how they address them to their patients. This includes all medical staff. From the person who answers the phone, to the nurses, lab techs, doctors, and other staff ALL of them need to be very well versed in these dreadful illnesses. For one thing, you maybe "well" and feel fit as a fiddle one moment, and within hours be severely ill and need hospitalization. Often times there is not a "warning" of impending AI and their flares. They can come on within moments, and you don't even know what hit you until it has. Unlike the flu, a cold, and other illnesses where you can certain "symptoms" like a forewarning of being ill, AI's can "attack" at any time they please.
So, when I call my PCP, and the girl that answers the phone is either not aware of my patient status OR she may not know about a "flare" of Lupus... she may insist that I "come in" and be seen. Well, sometimes that is a necessary... but at times, depending on my symptoms, my doctor may allow me to fore go the trip to the office for a visit, and just come in for a corticosteroid injection and a script for a high dose tapering down 14 days round of Prednisone.
Well, as I said, if the woman that answers that phone is "new", and so forth, I may have to make an uncalled for trip to sit in that office, to get the exact same thing I asked for. So, I've exposed myself to other illnesses, especially in the Winter. I've also wasted the doctors time, my time, and caused some other patient who truly may need to have been seen, to wait for a day. So, it is truly unjust for everyone. But, if whom answers the phone either knows me well enough, OR they understand the workings of come of these diseases, he or she may already be on top writing a note, taking down the information so they can talk to the doctor BEFORE making me come in for a totally uncalled for trip.
So, there are many involved in all types of health care that should be very "up" on autoimmune illnesses, diseases, symptoms, medications, and all that wrapping them up in neat newspaper, with a bow around it.
The very latest of challenges that many of us have had to hop over, or will trail and error finally get something nailed into the heads of the medical professionals, far and wide.
Interestingly enough, the UK tends to be "up" on the latest and greatest when it comes to being the leader in new medications, clinical trials, and finding out more than just about anyone around the globe. Often times I've noticed that Britain may have a "pilot" medication in the works. As soon as it is approved by the Brit's, you can bet the USA will be setting for us to jump up, and get to scrambling together researchers, grants and funding, clinical trials, and all on the band wago. What happens often times with a situation such as that. If the "CDC" of Britain signs off on a new medication, it means that the "medication" we put into the hands of researchers here that is basically the same, may not have to cost as much and those types of medications and treatments are sometimes able to be "fast tracked" into production. So, that is great for our economy, great for the Pharmaceutical companies, patients, doctors and so forth, because it gets here, and gets the door, helping to ultimately save lives...which ALL are great events when it comes to those with chronic autoimmune, incurable. painful, night mare diseases.
As 2015 "rolls in", I am hoping it allows me to try and "roll on through" with this blog, with the Ambassador (Platinum) work, and all of the other activist activities I so want to participate in.
Wish me luck as I am preparing to once again try to write the "Ultimate Book"... and get it published. I am also working on the more "fun" book, that will include many of the TX "sayings"... different words and how they tend to have different meanings in the South and in TX.. and many of the what some might call "odd" traditions we engage in here... in the Lone Star State!
It is almost impossible to believe all that happened at that time did. What is more impossible to believe is that the entire ordeal with the wreck that Jim went through, the months of hospital and rehab after that, and then months of outpatient rehab, the red tape that still goes on and on with the lawyer, and all of the fighting we have done to get him into physicians etc... it is truly a night mare. Maybe that is truly why I have night terrors almost every night of my life. There are not many nights that I don't wake up and I cannot breathe. I am "suffocating" in one way or the other in the night terror, but I am also in real life having massive problems breathing. Most nights I am up, trying half asleep, half awake and still almost in a dream like state trying to find my inhaler and the nasal spray, so I can once again breathe. It is crazy insane, but it is so very, very true.
I've done a good bit of research on night terrors, and of course the amount of stress from the accident in itself is enough to send me into a frenzy. When you add in my own health problems, and the fact that I have had to endure a great deal of my own pain once again, and the entire situation with my teeth, or no teeth now, the full set of dentures... of which the bottoms STILL will NOT stay in place, thus I am still not eating as I should, and by the end of the day, I just want to take the damned things out and throw them across the lawn into the street and say to hell with all of it. Of course the issue of also having "complications" which for me, what is new, yet they always seem to surprise me... of which involves my sinus cavity on the right side... and it is the maxillary sinus passage, which I have already been told, that I need to have repaired, I am sure has sometimes a great deal of reasoning behind my night mare like breathing problems. But, when you are facing another 7,000.00 PLUS out of pocket since you can't get a damned dental plan worth a flip, OR as this should be paid by regular Health Insurance, because a "chronic HEALTH Illness" is what caused me to lose my teeth in the first place should pay a portion of it. But, I have fought "tooth and nail" (no pun intended)... and I have just gotten way too weary to fight them anymore about paying any of it. Of course now, I changed insurance on January 1, thus you can believe that makes it entirely impossible to get either one of them to pay a dime ....
There is "after the fact of me already being out thousands" a "non-profit" that is for dental issues, mainly caused from autoimmune illnesses or cancer patients. But, there are way too many people needing the help versus the dentists and oral surgeons that will try and help out of generosity and not expecting either to have lots of people that will help.
Baylor dental college in Dallas also has certain things students do, while the professors and doctors watch, but you will much pay like 278.00 just to walk in the door. Then the 78.00 is a "fee" non-refundable, and the 200.00 is to apply towards care you are given, or if they can't help you then you get the 200.00 back. I know I went there to have my 4 wisdom teeth cut out all at once. In fact I was newly married, and my Dad drove me up there and home. I looked like a chipmunk with a full mouth of acorns for over a week. But, they charged a great deal less that having that done in a regular oral surgeons office.
As I leave behind so much "sadness" and "darkness" from 2014, I am trying my best to hold onto 2015 being a positive year, full of prosperity, not just financially, but more in the "domain" if you will, of getting things accomplished. I am trying to stay as far away as I can of thinking about all that took place in 2014, trying to look as each day a new one, that can mean much more as far as my writing, my advocacy, my activism, not only online, through my blog and writing, but I hope to be more involved in trying to find a way for my entire community of Ennis and Ellis County to become knowledgeable about the Autoimmune Illnesses, their symptoms, their lack of being able to be diagnosed, and to educate those that are surrounding me day in and day out right here, even as next door neighbors. I've come to see as of late, that there are MANY people that have some type of AI disease, FM, CFS/ME, Chronic Pain, right here that I could help, if given some assistance on how to go about starting an "awareness campaign" locally. We are SO LACKING in the understanding of Lupus, RA, Sjogren's (boy this one we REALLY NEED some understanding on), and MS... Raynaud's, Diabetes 2, autoimmune arthritis, autoimmune psoriatic arthritis... and the list goes on and on.
In fact, just about the time I was finally "diagnosed" with first MTCD & UCTD.. that turned into RA, Lupus, and the Sjogren's and Raynaud's was showing immediately when the MCTD first became the "name" of what was going on with me. There were two gentlemen (which is rare in the first place for men to have AI illnesses) both of them around the same age, both going to the church we were going to at that time, and both had Grave's Disease. What makes it even more unusual is men for the most part don't have "thyroid" issues either. Usually women have more of a propensity to have any or all of these illnesses and disorders.
So, right there being in a Church, with two guys, both almost the same age, both having Grave's disease was enough for me to absolutely know we had a much larger group of people with autoimmune illnesses. Both of then underwent treatment and both were "cured"... put into remission. My understanding is that once Grave's disease is in remission, that is permanent. Unlike many of the other AI illnesses, they "can" go into remission, but more than likely you will undergo swings of "active" disease symptoms, and then inactivity, yet there are no real "cures" for any of them.
That is why for me, I really would like to find a way, with the help of some of our community leaders, to get a group, or some type of monthly, weekly, however... crowd in a "face to face" type of environment to help them further their knowledge about their own, friends, or loved ones AI illnesses. I also would love to help people and physicians in "learning" how to talk about these diseases, along with how to talk about medications, side effects, long term "goals" or what to expect from having an AI or more than one, and what that will do in the years to come. Will more medication be needed, will hopefully there be more research, and possibly medications coming out? All of the questions that either patients themselves feel it is "wrong" to ask, or for the doctors who honestly are not as well versed on these illnesses, and how they address them to their patients. This includes all medical staff. From the person who answers the phone, to the nurses, lab techs, doctors, and other staff ALL of them need to be very well versed in these dreadful illnesses. For one thing, you maybe "well" and feel fit as a fiddle one moment, and within hours be severely ill and need hospitalization. Often times there is not a "warning" of impending AI and their flares. They can come on within moments, and you don't even know what hit you until it has. Unlike the flu, a cold, and other illnesses where you can certain "symptoms" like a forewarning of being ill, AI's can "attack" at any time they please.
So, when I call my PCP, and the girl that answers the phone is either not aware of my patient status OR she may not know about a "flare" of Lupus... she may insist that I "come in" and be seen. Well, sometimes that is a necessary... but at times, depending on my symptoms, my doctor may allow me to fore go the trip to the office for a visit, and just come in for a corticosteroid injection and a script for a high dose tapering down 14 days round of Prednisone.
Well, as I said, if the woman that answers that phone is "new", and so forth, I may have to make an uncalled for trip to sit in that office, to get the exact same thing I asked for. So, I've exposed myself to other illnesses, especially in the Winter. I've also wasted the doctors time, my time, and caused some other patient who truly may need to have been seen, to wait for a day. So, it is truly unjust for everyone. But, if whom answers the phone either knows me well enough, OR they understand the workings of come of these diseases, he or she may already be on top writing a note, taking down the information so they can talk to the doctor BEFORE making me come in for a totally uncalled for trip.
So, there are many involved in all types of health care that should be very "up" on autoimmune illnesses, diseases, symptoms, medications, and all that wrapping them up in neat newspaper, with a bow around it.
The very latest of challenges that many of us have had to hop over, or will trail and error finally get something nailed into the heads of the medical professionals, far and wide.
Interestingly enough, the UK tends to be "up" on the latest and greatest when it comes to being the leader in new medications, clinical trials, and finding out more than just about anyone around the globe. Often times I've noticed that Britain may have a "pilot" medication in the works. As soon as it is approved by the Brit's, you can bet the USA will be setting for us to jump up, and get to scrambling together researchers, grants and funding, clinical trials, and all on the band wago. What happens often times with a situation such as that. If the "CDC" of Britain signs off on a new medication, it means that the "medication" we put into the hands of researchers here that is basically the same, may not have to cost as much and those types of medications and treatments are sometimes able to be "fast tracked" into production. So, that is great for our economy, great for the Pharmaceutical companies, patients, doctors and so forth, because it gets here, and gets the door, helping to ultimately save lives...which ALL are great events when it comes to those with chronic autoimmune, incurable. painful, night mare diseases.
As 2015 "rolls in", I am hoping it allows me to try and "roll on through" with this blog, with the Ambassador (Platinum) work, and all of the other activist activities I so want to participate in.
Wish me luck as I am preparing to once again try to write the "Ultimate Book"... and get it published. I am also working on the more "fun" book, that will include many of the TX "sayings"... different words and how they tend to have different meanings in the South and in TX.. and many of the what some might call "odd" traditions we engage in here... in the Lone Star State!
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| Working on a back ground graphic for the top of my Facebook page. I want to include the URL back to here. Often people may not bookmark a page, or like even though I post a "link" back to my blog in the posts, it may get moved down several slots, and then people may not be aware of how to get back to my blog... |
Tuesday, January 6, 2015
As another year begins, Lupus, RA, pain, and trying to put those aside to be able to do something Outstanding!
An odd title, to say the least. But, everything about me, that I do, say, feel, see, is always "odd".
I've finally moved stuff around today, and got my stair climber exerciser in my Living Room. I put the stationary bike in the bedroom, because I desperately need an "entire" body workout starting today.
I've allowed myself to eat way too many things I should not, sit on my butt and find other things to occupy my time, and make excuses for not exercising. Thus now I "feel" the weight, see it, and I can tell that due to first of all getting lax on the walking, the weather being too cold, and lack and laziness of going through every day and every meal, mad and disappointed that I am honestly not able to eat as healthy as I usually do. The dentures are truly a huge hindrance depending on what you are trying to eat, thus as I said in a Facebook post, the very things that I loved and are healthy, I now cannot eat... like apples, fresh veggies... and the other things that are low in calories, high in nutrition, and don't let you get saggy and baggy...
Holidays are always difficult. There are so many goodies out there to temp everyone, between, cakes, cookies, candy, and the rest of the things... that temptation gets the best of us. Then, when you can't eat everything you are used to eating... (and you would be totally shocked at what some things are that I can or can't eat with these stupid things in)... then you really just get to the point of not caring what the heck it is... food you just see as food... and the rest of the time you are fighting to keep the stupid bottom denture in or trying to keep them from rubbing a sore spot in your mouth.... and so forth.
So, the entire thing I was SO HOPING would be out of my face by Jan 2015... and yet I am still facing the mess... and not anywhere near through, and certainly not anywhere near wanting to drop that kind of cash into a damned dentists or anyone's lap for sure...
Why does that type of stuff have to be so freaking blazing expensive???? I mean I realize they have an office, and employees and equipment, but hell I don't know many people who could REALLY AFFORD to have this mess done completely and have the "dime" to drop on it all at once... and I look up and it's almost 5:00 pm... where the hell did this day go to????
More to come tomorrow... Off and out for now...
I've finally moved stuff around today, and got my stair climber exerciser in my Living Room. I put the stationary bike in the bedroom, because I desperately need an "entire" body workout starting today.
I've allowed myself to eat way too many things I should not, sit on my butt and find other things to occupy my time, and make excuses for not exercising. Thus now I "feel" the weight, see it, and I can tell that due to first of all getting lax on the walking, the weather being too cold, and lack and laziness of going through every day and every meal, mad and disappointed that I am honestly not able to eat as healthy as I usually do. The dentures are truly a huge hindrance depending on what you are trying to eat, thus as I said in a Facebook post, the very things that I loved and are healthy, I now cannot eat... like apples, fresh veggies... and the other things that are low in calories, high in nutrition, and don't let you get saggy and baggy...
Holidays are always difficult. There are so many goodies out there to temp everyone, between, cakes, cookies, candy, and the rest of the things... that temptation gets the best of us. Then, when you can't eat everything you are used to eating... (and you would be totally shocked at what some things are that I can or can't eat with these stupid things in)... then you really just get to the point of not caring what the heck it is... food you just see as food... and the rest of the time you are fighting to keep the stupid bottom denture in or trying to keep them from rubbing a sore spot in your mouth.... and so forth.
So, the entire thing I was SO HOPING would be out of my face by Jan 2015... and yet I am still facing the mess... and not anywhere near through, and certainly not anywhere near wanting to drop that kind of cash into a damned dentists or anyone's lap for sure...
Why does that type of stuff have to be so freaking blazing expensive???? I mean I realize they have an office, and employees and equipment, but hell I don't know many people who could REALLY AFFORD to have this mess done completely and have the "dime" to drop on it all at once... and I look up and it's almost 5:00 pm... where the hell did this day go to????
More to come tomorrow... Off and out for now...
Sunday, January 4, 2015
How "Autoimmune and/or other Chronic Illnesses" seem to "slow you down to a snail's pace"
Lots going on here, there and yonder...mmm one of those "Texas" words "yonder"??? I have people especially ones in California ask me where "yonder" is??? Well, in TX, it usually means in the direction you are pointing! LOL!!! New word for today.... "lollop"... to "loll" around for short... or to be a bit in a lounging position and it can also mean to "bob" up and down.... I had heard this one and have used it so not really "new" to me, but it puts it in my head to use it more... I am in the process of finishing paying bills, cutting out coupons, and trying to NOT feel BAD!!! I woke up about 4 am with the worst headache, and my stomach was upset.... plus I just have no energy for some reason... and of all days... even though it is sunny outside, the wind chill has to be COLD as heck! Oh, another word I had tried my best to think of last night, and I could recall several words that kind of meant the "same" as what I was trying to come up with. Finally I got the Thesaurus out and looked up "neutered", "watered down" and so forth. Then the word I was looking for hit me... CENSORED... I think something due to me NOT censoring my writing there are times some may get offended by what I say. Now, don't get me wrong, I am not going to poignantly come out and write something meaning to piss someone off or upset them on purpose. But, if I begin censoring my writing, it is no longer what I want to say. It has made me wonder why I don't get as much traffic to my blog as I want. I realize that "links" back to other sites help immensely, to get your rankings up as far as SEO goes for sites and search engines. But, it is not even "strangers" that maybe "googling" a certain type of blog, or illness, and then they come across a link to my blog or facebook page etc. It is more about wanting ALL of those that spend time here at Facebook, Google Plus, and other places they may find out about me being a writer and published author that I am interested in. I seem to never get feedback. No matter if I write about my own health issues, about the other places I am a strong voice as far as advocacy, activist, and ambassador on, or if I am talking about my own latest catastrophic event of the day, I never get many replies back, or more comment is what I mean on the blog in itself. Does that mean people don't like it so father than say something tacky to me, they just don't say anything at all. Or is it I do hit the nail on the head for many, yet they just don't find it necessary to submit a comment on whatever subject matter I may pick for the moment. Well, unless something ridiculous happens this year of 2015 I plan on posting MORE blog posts, and working on both books daily, as well as learning a new word, getting back to my exercising since I have kind of flaked off the past several months. I do lots of running around since Jim is not able to go out, or clean, cook etc... so I get lots of "exercise" with all of that, but I need to be back on the stationary bike, out walking daily or trying once again to use my stair climber. Me and that thing have hell, but it is mainly because my feet want to slip and slide all over the place. That does make it difficult to exercise on when you are constantly having to reposition your feet.
Okay, I have done a couple of the "new" items on the agenda, and I stopped a moment to say hello to all. It is hard to believe the holidays are already past, the new year is here, and once again it is back to the "farm" to hitch up the mules, put the crops in order, get kids back to school, and put noses to the grind stone hoping for a better 2015 for many of us.... take it one step at a time, one breaths space at a time, one day, one week, one month... all at a time... slow down, stop. and try your best to "accomplish" something even if it a new word daily, that you can be proud of for 2015... read a book, write a novel, crochet, paint, learn to play an instrument, go back to college, or just spring clean your home and throw away everytthing that has NOT BEEN USED in a YEAR! I have figured out, if something is lingering around my home, whether in my closet as clothes, or dishes, or whatever might be "building up" and not being used... throw it in the recycle bin, take it to Goodwill, give it away, have a garage sale, but take your home to an entire new level... for me that does mean a great deal of getting rid of stuff that is just that stuff that sits around and is either already worn out, or I will never use, or was meant to do one thing or the other but I never got to it... and I am bound and determined, that I am GOING TO PAIN MY KITCHEN and have a new floor put in. IF it "hair lips" Harry as the old saying goes - actually it is "if it hair lips the Pope"... and I am not sure why, but that is how it has been said for eons... I already have colors picked out, and they have an already "pre-cut" cabinet top that is not all that expensive that should replace mine hopefully quite easily... so my hopes are that at the very least I get a "new updated" kitchen, floor to ceiling, and we get the outside of the house painted... of which I can do most of it myself, but I am just so slow, it will take me quite awhile by the time I sand down all of the old paint (Lord I bet there are 5 layers of old paint) on my cabinet fronts. Someone before us never scraped or sanded anything. and then when we got here, it was a hurry up, had our lease on our apartment ending, and did not want to pay another month's rent if possible... so there were somethings we had to kind of just "do half azzed" at the time, in order for us to move in that fine Winter of 2006, which we almost froze our butts off... Lord it was a cold winter that year. Jim was redoing our hardwood floors, and we were concerned about whether that coatings would dry on them fast enough for us... we really needed to scrape those cabinet fronts and doors, but time made us just get it painted and cleaned up so we could get moved in... wow, how the heck we made two huge moves, including coming to Amanda's wedding the Summer before we moved here, then Dad's funeral at the 3rd month of 2005, then we made the major move to San Pedro CA, and withing 3 months were on the road again for a long haul to Ennis....we got here on December 19th, 2005... Amanda had just had James on the 6th of December, and they all came up, well at that time it was Heather, James a new born, Amanda and Jimbo, then Jason and Danielle I believe both came over... I know Jason did... anyway down memory lane... due to me knowing what I could get accomplished then, compared to how long it takes me to accomplish anything now... is like a very long, long distance... Anyway, off to take meds, eat a bowl of cereal or something, and possibly get some writing done.... ;) ,
Okay, I have done a couple of the "new" items on the agenda, and I stopped a moment to say hello to all. It is hard to believe the holidays are already past, the new year is here, and once again it is back to the "farm" to hitch up the mules, put the crops in order, get kids back to school, and put noses to the grind stone hoping for a better 2015 for many of us.... take it one step at a time, one breaths space at a time, one day, one week, one month... all at a time... slow down, stop. and try your best to "accomplish" something even if it a new word daily, that you can be proud of for 2015... read a book, write a novel, crochet, paint, learn to play an instrument, go back to college, or just spring clean your home and throw away everytthing that has NOT BEEN USED in a YEAR! I have figured out, if something is lingering around my home, whether in my closet as clothes, or dishes, or whatever might be "building up" and not being used... throw it in the recycle bin, take it to Goodwill, give it away, have a garage sale, but take your home to an entire new level... for me that does mean a great deal of getting rid of stuff that is just that stuff that sits around and is either already worn out, or I will never use, or was meant to do one thing or the other but I never got to it... and I am bound and determined, that I am GOING TO PAIN MY KITCHEN and have a new floor put in. IF it "hair lips" Harry as the old saying goes - actually it is "if it hair lips the Pope"... and I am not sure why, but that is how it has been said for eons... I already have colors picked out, and they have an already "pre-cut" cabinet top that is not all that expensive that should replace mine hopefully quite easily... so my hopes are that at the very least I get a "new updated" kitchen, floor to ceiling, and we get the outside of the house painted... of which I can do most of it myself, but I am just so slow, it will take me quite awhile by the time I sand down all of the old paint (Lord I bet there are 5 layers of old paint) on my cabinet fronts. Someone before us never scraped or sanded anything. and then when we got here, it was a hurry up, had our lease on our apartment ending, and did not want to pay another month's rent if possible... so there were somethings we had to kind of just "do half azzed" at the time, in order for us to move in that fine Winter of 2006, which we almost froze our butts off... Lord it was a cold winter that year. Jim was redoing our hardwood floors, and we were concerned about whether that coatings would dry on them fast enough for us... we really needed to scrape those cabinet fronts and doors, but time made us just get it painted and cleaned up so we could get moved in... wow, how the heck we made two huge moves, including coming to Amanda's wedding the Summer before we moved here, then Dad's funeral at the 3rd month of 2005, then we made the major move to San Pedro CA, and withing 3 months were on the road again for a long haul to Ennis....we got here on December 19th, 2005... Amanda had just had James on the 6th of December, and they all came up, well at that time it was Heather, James a new born, Amanda and Jimbo, then Jason and Danielle I believe both came over... I know Jason did... anyway down memory lane... due to me knowing what I could get accomplished then, compared to how long it takes me to accomplish anything now... is like a very long, long distance... Anyway, off to take meds, eat a bowl of cereal or something, and possibly get some writing done.... ;) ,
Covers I am working on for my Two New Books
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I really have SO MUCH to try & catch up here on, so I am going ton"Post"n some of my ongoing chronic health issues, things abo...
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How can our kids feel safe when WE as adults don't???? I fear Wal-Mart or just walking across the parking lot at HEB in my small lo... -
I finally made a trip to Urgent Care with what I feel is a very bad Lupus and RA flare, but there are several "symptoms" strange t...