Monday, January 26, 2015

New Year - New Revelations - New "lease" on Life, still all wrapped up in an Autoimmune Illness World and How to make dreams come true...

I have under my own terms "swore off" procrastinating about the writing of my 3rd and in fact 4th book. I had a very good email come in this morning from "Create A Space" that had an article about how to "put off" the writing of a book. We can make up a thousand and one excuses, especially if you a chronically ill, or like myself chronically ill, dealing with some symptoms that can really make daily life a challenge. To top that off, now I am kind of the "whole deal" of being a care taker for myself and for Jim. Even though within a short couple of months it will be a year since that fateful car accident, that sent me reeling through a "time space" that still I am not so sure of how I got through it all.

Honestly, I am not sure I truly have resolved all of it in my own head, heart, and soul. I question my own illnesses, and as of late, have developed more symptoms, that truly have started to concern me. I am not so sure that they are from the autoimmune illnesses, I am already diagnosed with. I have this "gut" feeling... that my "gut" feeling (n pun intended), along with the nausea, the extreme fatigue, all of the lower back pain, leg pain, of which even woke up me at 4 am this morning, and sent me rushing to get some medication, and then even though I really wanted to get up early, I remained on my sofa bed until about 7:40 a.m. That had not been my normal behavior for the many months that followed Jim's car accident. I rarely slept. Some days I wished I could go "find" those nights and use them to further the writing of my books.

I am trying to properly place myself where I desperately need to be in order to get this book written by the end of the year. Yet, if I don't heed the advice that I read just this morning by a group of very good writers, I will continue to "put off" the book and never get it written.

So, over the next few months, I will definitely keep my blog "fresh". I won't allow myself not to publish things and write events and so forth here. You, my audience is extremely important to me. So, the last thing I want to do is lose you due to me not posting and keeping current information here, because eventually my heart tells me some of you will be the "audience" that helps my 3rd book to take off enough that I can give a good portion of those proceeds to a couple of very important charity/non-profit organizations that I feel are crucial to the findings about everything autoimmune. From the very beginnings, to the fight going on admist researchers, grant money, patient and clinical trials, standing up to our Congress both state and national to get them involved in such a crucial matter to all of us here in the USA, and the incredible work of those in many of these non-profits who are no longer just "charity" organizations.

They are SO MUCH MORE than "charity" types of businesses. They are the very operatives that go in "fighting" for us as patients, as caretakers, as family members dealing with these illnesses, and to get the funding needed to battle, and win the raging war over how the ruthless diseases destroy so many lives. Whether through loss of jobs, family problems, endless medication and doctor bills, fighting with insurance companies, pharmacies, and the list is endless of the daily ordeals we go through to try and "get well"... or at least feel better, find remission, and a state of "no more disease" to have to contend with.

I promise to do my very best to keep this blog fresh, full of new posts and information while I dig much deeper inside of my own heart, brain and soul to complete this 3rd book. And I know beyond a shadow of a doubt, I WILL accomplish that.


Saturday, January 24, 2015

The Movie "Cake" Comes Out and Receives Reviews - I feel Jennifer Aniston Brings Light to Chronic Pain Patients

I noticed several "not so great" reviews of the movie. None of them were really putting down Jennifer Aniston and her role that she played, but moreover it seemed like the critics viewed the script as being "watered down" from its original writing. I believe originally it must have went out on a limb even further to depict the life that so many of us totally understand. This is NOT some fairy tale, or some kind of "mystery novel", or just another movie. It is depicting a very true sense of what any and all of us have been through chronic pain and/or chronic illness have in our own reality, daily. We live this over and over again. The pain, the anger, the place and time we want to throw in the towel, give up, and say NO MORE! 

Anyone who goes through pain such as this nagging, agitating, never ending, daily, grinding, aching, stabbing, just RAW type of something you know you may have to continue to live with day after day, month after month, year after year.... there comes a place for many of us, that we must stand back, and kind of "observe" what is happening to us. You add in the amount of stress, of trying to hold it together for a job, for a family, a spouse, or for the world "outside". 
No one ever wants to appear "weak"... and some where down the line, we have had hammered into our brains, thoughts, and reality that showing "pain" in any form is a true sign of weakness, of not being able to weather the storm, of being someone "less than", and rather than be draped in understanding and help, we wind up totally alone, all of our friends and family suddenly disappear, and we seem to be just a heap of flesh and bone, that others can't deal with. 
You will find in your own walk with pain, that others, whether it be family, a spouse, close friends, even your doctors and medical professionals want to "shed" themselves of you. The idea that they have to watch "you" in such pain, brings them to think about their own life, and they almost act as if "pain" is contagious. You are carrying something around they can "catch" like the flu or a cold, so they shun you. 

I've had to deal with physicians back over 20 years ago, when I began having migraines. At that period of time & even to this modern day of medicine, some physicians have this "ideology"  that "women" are complainers. Either they want to blame our pain and illness on "stress" or another huge one was "depression", or that it is "hormones", and many often just wanted to press that the female gender were more likely to use "pain" as a crutch. I've even on more than one occasion dealt with physicians that actually believed I was just some woman looking for "drugs" rather than the reality I was in horrid pain. 
Men as a whole, have always been taken more seriously when it comes to pain. If two people, one a woman, and one a man, came into the emergency room complaining of severe pain, you used to be able to bet the man would get "treatment" not only more quickly, but probably medication and help that would be able to help with the pain. The woman on the other hand maybe sent away, with some kind of excuse, and told to see their doctors the next day and so forth. 
Things have changed somewhat in the past 10 to 12 years, and we as the female species tend to be taken more seriously when it comes to pain. I can recall the day I drove myself to the ER, having a heart attack, in pain. and they actually took me seriously. 

Yet, I had been to that exact same ER on many occasions before that with a severe, intractable migraine, and depending on which physician was on duty at that moment, it was a crap shoot as to whether I would receive the proper treatment, or be a "guinea pig" for something I knew would not work, and then sent home without the help I needed. In the years from about the age of 21 through my early 40's I watched this happen again and again. Whether it was the ER, my doctors office, or a clinic, I never quite knew how I would be treated. Like I said above, I had been given just about every crack pot diagnosis there was because of being female. I am sure many doctors out there will deny that, and most of them are probably now retired or have passed away. Yet, I've ran into the exact same mind set recently. You can guarantee, with the ongoing health issues I have now, if I get even a "hint" of being put off, or not taken seriously about my health problems , I am out of that office, down the road and looking for a new physician. 
I've learned no one has to take being treated as if they are not telling the truth, or not being taken seriously. 

I've had to learn the lesson that physicians' are also humans. They have been looked upon as some "special species" that make no mistakes, everything they tel us we should take to heart very seriously, and that you NEVER not do as your doctors advise. I am here to tell you, doctors are not PERFECT. The "advice" they give us as patients is "advice". Just because a physician recommends a certain test, treatment, medication or a specialist, does NOT mean you must bow down like he is the "Lord" himself and rush off without questioning the reasons behind what he or she is doing. You, as the patient, have MANY rights. First of all, you have the right to be treated as an intelligent human, with either symptoms you are concerned about, or a chronic illness or pain that you are there to follow up on. You have all the rights that are in the "Patients Bill of Rights" to ask every question you wish. If it is about a medication, and you feel it may not for one reason or the other be something you need to take, then question why that drug is important. If there are tests to be done that your medical professional is "suggesting", whether lab work, nerve conduction studies, X-Rays, MRI's, CT Scans, and many others, you have the absolute freedom to ask why that particular test is being performed. What will it help to either show, if anything is wrong, and if you have recently been through the "exact same" type of test within a few months of one another, then you SHOULD be asking them what is the importance of doing a procedure you just did a few months back.

It stands as a well known fact these days, that "specialists" all too often want to have "their own" procedures, testing, labs done. Even though another physician may have just done all of the exact things a month or two ago, there is this "code" some doctors have that rather than look at whats already just been done, and work from there, it seems another "new" set of tests performed by their "preference" of labs, techs, and so on may be able to do it better; more efficiently, or possibly the others missed something when they did the test a month ago. I can almost guarantee under most circumstances there will be nothing different. Unless you have some type of health issue, such as cancer, or blood clots, or some other very fast moving type of medical problem, those tests that were performed a month or three months ago, will be the same. 
Tried and true this happens for a couple of reasons. First of all, doctors, especially "Specialist" tend to be arrogant, and feel they do the "best" surgery, best diagnosing; they are "best" at everything. So, never would someone that highly educated and knowledgeable take the word from another physician or whomever did their testing. Or it is something much more tangible than their ego. It is their "hip-pockets." Doctors, especially those in very highly specialized fields DO get "perks" from certain labs, MRI companies, certain pharmaceutical companies, from those highly regarded business that make medical equipment, such as pain pumps, knee and joint prostheses, and others. 

Now the first things that may jump into your head is that physicians cannot take "bribes", or money from "any" business such as that. Plus, they are not supposed to "favor" one company over the other when it comes to medications, medical equipment, and so on. Yet, how many times have you set in your physicians office, and the pharmaceutical representatives are there. Either they get to go back while you are sitting there waiting on your own appointment. Or they drop off "goodies", possibly even samples of medications. I know for a fact one of my Orthopedic Surgeons was taken out to dinners, or given other items of use, because he was using their prosthesis, over another company's. Now, it is NOT against a code of moral ethics for a physician to go out and dine with these representatives, or get pens, pencils, all kinds of office supplies from them, and accept certain types of goodies brought in for holidays and so on. But, of course it is certainly illegal on a moral, ethical, and the law side of money to change hands or preferential treatment from entities such as these. Then again, sometimes you have to wonder where some doctors get the money to drive very expensive vehicles, unless they are like the so-called "Opthamological Surgeon Specialist" that turned out to be the biggest ass, and the outstanding "quack" I've ever had the chance to see. NEVER, and I mean NEVER will I, or anyone I can convince NOT to see this so called eye specialist. He was as far as I'm concerned gone out of his mind. All the while he was raking in the money. When you can have an office of more than 50 personnel, and your "office" takes up an entire floor in an office building in Dallas, plus the staff was almost choreographed to play their roles in what seemed more like a "movie production" than a specialists office, you had better turn, run and never look back. 

So, all that said, I feel this movie and I hope more to come in the near future will truly bring out the very "real" challenges patients chronically ill and/or with chronic pain go through to get the help they need. For the most part, I know speaking for myself, I am flying by the "seat of my pants" when it comes to new symptoms that concern me, which physician should I go to for a particular new symptom, or should I first do enough of my own research to help speed up the process of me feeling better. Changes are fairly good, that I am better off trying to research my own symptoms, changes, differences that I'm experiencing BEFORE traipsing down to my doctors office. For one, I feel if I don't go well prepared, with a list of symptoms, and some information about what research I've done to possibly explain what is happening; I wind up not getting my "dime's worth" into my physician, he mumbles a few sentences, listens to my heart and lungs, and then off into the wild blue yonder he flies out, leaving me more confused than when I came in, with some "new" medication that is probably not going to be helpful, and I am as just in the dark as before, but worse. Again I've had my physician NOT listen, NOT hear, and NOT diagnose my problem. I go home upset, mad, and ready to rip someone's head off (not literally), because I feel cheated by the medical system again. 

I happen to be fortunate enough for the moment, because it can change in any given time frame of having a Primary Care Physician (PCP) that is young enough, extremely intelligent enough, and likes the fact that I DO research first, then bring what I feel maybe useful to him in order to find out what is going on with me. So, he LIKES informed patients. My Rheumatologist is definitely the same, if not more so. He LOVES the fact I have done research on medications, on the RA, paid attention and written notes about my symptoms, and come in as well informed patient, that can understand exactly what he is suggesting. Often times when I bring something in, say about new medications. More times that not will he be on the same page as I am. I leave there with what I felt might be the answer. And he seems grateful to have a patient willing to keep tract and give him as much information as I can. It is a win-win situation for both physician and patient. 

So, as I close this "chapter" even though I have only seem the "trailers" of Cake so far, I believe it is a giant step forward in the progress of educating everyone about chronic pain and chronic illnesses. It is a look into the human soul and just what a toll these illnesses take on us. My hopes are this movie will open the doors in Hollywood and be the start of something much bigger. If this film and others that could follow can help to educate all of us, to understand that something "chronic" means just that. It is "here" to stay, each moment, each minute, each hour, day, year and beyond with us. So, those that live with these many costly illnesses, the toll it takes on making some of us no longer able to do our jobs, take care of families, have our own "normalcy" of like back, and the cost on our nation alone in medical bills and lost wages. "Chronic Pain" all too often completely destroys the quality of life for the patient, spouses, and families, causing divorces, and destroys what many of us have built our life upon. 

My hopes are that you also will see the movie, and respond to it. We should let it be known that this should be the start of a much larger look into more and more "true to life" film portraying a life "taken" over by pain and suffering. 




 p.s. by the way the CEO of the Arthritis Foundation has endorsed this film and has told her feelings about it depicting all that patients deal with.
 

Friday, January 23, 2015

Arthritis Foundation - 2015 Annual Summit on the Hill in Washingon D.C.!!!!

Registration is open for our annual advocacy summit! Join Arthritis Foundation staff & other advocates on Capitol Hill to meet with legislators & tell Congress that ignoring arthritis is unacceptable & more needs to be done for people with arthritis! Registration is free. Details here: http://www.arthritis.org/advocate/advocacy-summit/

 

I am so TOTALLY THRILLED to be going back to Washington D.C. on March 24th through the 26th for the "Annual Summit on the Hill" - Time is already flying by so quickly. Thank Goodness I already have a pair of awesome boots to walk in... they are so comfortable and have a lower heel on them than my others! Plus I have a brand new longer jacket that should be very warm for the days there...LOL.. my luck, last year I felt I was not as well prepared for the cold, rainy, snow filled weather. So this year I made sure to try and be more prepared. I even had to buy another pair of gloves! I lost one of my green ones somewhere between the Capitol and the Hotel on our last day there. I loved those, but I have a new pair of red ones that are awesome also. Plus I am more aware of what to wear when, and the entire routine! This is going to be an astronomical year I feel in my bones for a headway forward into the places of lessening flares, possibly preventing flares, putting more of us into a remission, or help the spread of these diseases... I think as all of the leaders in the non-profit world of Arthritis, including RA and JRA, along with strides made in other autoimmune related illnesses, we shall see greatness.... I urge you to sign up to be an "e-advocate", because YOUR VOICE matters!!!! Hope to see you there!

Wednesday, January 21, 2015

"Learning" - New Words for Today - and My thoughts about a Certain Quote I stumbled upon...

Okay, time to learn words for the day! 

1)  decumbiture

The time at which a sick person takes to his bed, or during which he is confined to it by disease.

In astrology, the figure of the heavens erected for the time of a person's first taking to his bed from illness. Prognostics of recovery or death were derived from this figure.

The word 'decumbiture' comes from a Latin word meaning 'to lie down'.


2)  libertine
MEANING:
noun: A person who is morally unrestrained.
adjective: Unrestrained by conventions or morality.

ETYMOLOGY:
From Latin libertinus (freedman), from liber (free). Ultimately from the Indo-European root leudh- (to mount up or grow), which also gave us liberty, livery, and deliver. Earliest documented use: 1384.

A THOUGHT FOR TODAY:
In those parts of the world where learning and science has prevailed, miracles have ceased; but in those parts of it as are barbarous and ignorant, miracles are still in vogue. -Ethan Allen, revolutionary (21 Jan 1738-1789)

and now my own "thoughts" about the Thought for Today....

I find the "Thought for the Day" quite interesting. Being that it came from the 1700's, and at the time of course we were not "barbaric" at all, but we also were not out of the woods as far as having a good grip on large corporations, large manufacturing, or items that would make us appear to be very far on the other side of science and learning. We have always been a great deal ahead in some countries as far as our "learning curves" compared to places such as some places in Africa, or down in South America. Yet, look at "Stonehenge" and the "Inca's" and the "housing" or tiers that they "built" or the pyramids... all of those things were designed by "a learned and scientific" society. I believe that those people that built Stonehenge, or the Inca's, and many other people like the Egyptians believed in miracles, yet they also had knowledge behind them also. So, it just seemed very interesting even in the early 1700's that Ethan Allen saw that those who are more attuned into "miraculous" happenings seemed to be less "educated" than some. I guess there are two sides to the coin when it comes to scientific beliefs, knowledge, and the other side of the coin, believing more in a miracle than in it being based with some kind of real explanation. What may seem a miracle to some, can often be explained away as it being a specific answer, rather than it being spiritual or something that happens where knowledge nor science can explain it. Yet, when you look up at the heavens, can "science and knowledge" truly "explain" all that we see and know up there? Some would certainly agree that "all" things can be given explanation to, and not be done like a magical force. Yet, I think as our constant, every changing world is today, more and more even those with the most knowledge can see that some things that happen just cannot have a concrete reasoning behind them. Thus, there are other forces at work in our world that cannot be seen, touched, or felt. But, are here, and logic must fly out the window... I am sure I am not making much sense at this moment, even though I know what I am trying to say... even in the entire jurisdiction of the medical world, there are items that are just not explainable by modern medicine. We see this with physicians and in our medical domain all the time. Doctors at times admit they may not truly have a plausible "why" or "why not".

When you start to delve into our issues with chronic illnesses, chronic pain, and how many things we still have to school ourselves on, it is an endless and boundless "land" on which we stand. Even as many researchers, teams, advocates, non-profits, doctors, students, and schooling as we have to offer up the best explanations as to why some of us, especially female in gender, fall into the role of living with "autoimmune illnesses". I've often wondered "why" it is more of a "female" set of disorders, syndromes and illnesses, that do not effect the male population nearly as it does our women.
I've also pondered upon the reasons as to why my life's journey didn't take me further into the places of medicine. The medical field has been a fascination of mine since I was about 12 or 13 years old. I've told the tale often about living next door and growing up with a neighbor who was a nurse for our hospital forever and a day as it seemed. Our next door neighbor was the very BEST NURSE in her time on this planet. She is almost a "lost" soul now. I am NOT knocking nurses at all. There are many out there that do the job, BECAUSE THEY CARE! But, much like Teachers these days, between the worry of red tape paperwork, the number of horrid illnesses out there they must be so careful about, and now things even worse due to diseases out there we have no "medications" for... antibiotic resistant infections, like Ebola, and even forms of TB, Pneumonia, and others. It is a frightening era in nursing and the medical field for those that deal one on one with patients, body fluids, and everything that they could have just a tiny "mishap" and be one of those in the hospital, rather than working there.

Yet, this lady took me under her wing. She was a 2nd Mom to me all my life, from about the time I was 6 or 7, until I graduated and married at 17, she had me so engrossed in the passions of medicine and nursing that I had plans for many years to do just that. I wanted to go to school to be a nurse. This woman (I will call her Dee Ann) had 2 sons, and then decided to go to nursing school. At the time being an LVN was a good position. RN's of course were more of the "leaders" and supervisors, but being an LVN appealed to me because when I was old enough to become a "Candy Striper" I got "hands on" experience of watching babies be born, "autoclaving and sterilizing instruments", watching surgeries, caring for the newborns, and even making Christmas "stockings" that babies born on Christmas Day got to go home in a "stocking" Dee Ann and I made. She taught me how to sew, how to crochet, how to do just about everything at the hospital that she did. At the time, I was probably the only girl racking up hours and many hours at that as an "aide"... more like an advocate, or volunteer. But, I would spend my entire Summer Days 8 hours or more if they let me right beside Dee Ann, learning everything there was to becoming the very best nurse possible. There were no "disposable" instruments. Everything was sterilized, washed, and then packed in certain ways depending on what those instruments were for (an in what type of surgery and so forth), then wrapped in special wrapping and put into a very large "vat-like" autoclave. They were then in there, and steamed for a certain amount of time to completely finish the sterilizing process. Then they were labeled by date and what type of pack it was. I got to change diapers, take the newborns to their Mom's, hold them, feed them, watch them be born, and even would watch through the window of the Operating Room when they were performing surgery. Those were some of the best years of my younger life.
Why I had the notion to decide and marry so young, I don't know. Love is love... but hind sight is 20-20 as they say. I still at the age of almost 55 years old, "kick myself in the butt" at times wondering why I didn't go ahead to nursing school. Even married, I could have went. Then when I was working in the business office at a hospital for 6 years, again I had the opportunity to go to nursing school all paid for, and I passed the test and could have went. But, I had two kids in school at the time, and being away from a full time job for 2 years to go to school full time, was a bit of a daunting situation for me. Even my 2nd marriage was full of ups and downs, in the later years more downs than ups. I felt I had to "support" my kids and home first, thus I decided NOT to go to nursing school. Even after passing the test number 1 at the college there, and was a front runner, I declined. It was one of the most difficult decisions I ever made in my life. I did go to college at night for several years, completely a degree in accounting. Yet, accounting was just not in my mind as the passion I felt for the medical field.
And it still holds true today. If things were different, and I was not chronically ill, and now a bit OLD to decide to go off to college and become a nurse, I would go in a heart beat.

Alas, life takes us on many journey's. Often we may not understand the reasons why until later in our lives. Then there are times we never quite figure out why or why not in what we consider this daily walk of the "game of life"... all too often now it seems it is a game all right, but I feel as if I am on the losing team.

I can "see" the many "curves" in my river of flooded waters and then at times, just a trickle of water over the rocky bottoms of my life. I can blame it on love, on family, on Dad NOT pushing me enough, on the "time" in life when most women didn't think about college, and then on seeing that now I am chronically ill and probably would not be able to be the nurse I would want to be.

Any and all of the excuses in the Universe have never allowed me not to feel a bit bitter about not fulfilling that dream of destiny I had for myself and for the many I feel I could have helped.

I realize now, more than ever, I can "fulfill" a portion of that dream. All of my wide array of medical knowledge, and the years I've put in, along with what I have done to "self educate" and learn about my own illnesses has given me a light to the path of advocacy, of activism, and to help other through my own journey. I've been able to do some things that I helped to kind of fulfill a portion of that dream of "helping others".

As I ponder over all the things that flow and swirl around in my brain, I still live with the idea that many times I've put off something, thinking, well I still have time... to do this, that or the other... or things will be different or better... yet life is very short... as young people we so often can't see that... and as our years pass by so swiftly, we begin to live with "regrets" of why or why not, of how we did or did not, of all the things in life we now know are "missed opportunities". Of course I don't and will never "regret" the wonderful times in my life, and the things I have been able to do, accomplish and say that I did, like publish two books, and hopefully a 3rd this year... but still as mere humans there are so many things we "miss the boat" on... and when you become chronically ill, or arrive at this crossroads in your life where you can recall those times, it can be a mixture of happiness and also sadness for what you "might have" accomplished... never take a moment for granted... they all fly by so quickly.....





Tuesday, January 20, 2015

"Autoimmune Epilepsy"? - Stiffness Onset, feeling severe fatigue, headache? What is it?

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....

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.....


http://www.arthritis.org/advocate/join-the-movement/sign-up-to-be-an-e-advocate.php#