"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....

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#

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

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

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.