"How Serious" is "Lupus/RA/FM... MS.. and so forth "Brain Fog"!?

Brain? Fog?   I Can't remember!?

I know for myself, I've tended to make a "joke" here and there... blaming something I misplaced, or did not remember on the "brain fog". I think in the RA... Lupus and all Autoimmune World, we use that not in a "joking" manner, to really joke about it, but because I can bet, like myself in the last few weeks, my "Brain Fog" has turned into no laughing matter.

I am in the very worst flare of a combination of Lupus/RA right now that I believe I've had since diagnosed 4 or so years ago. I mean from fatigue that makes me not able to barely drag myself around my tiny home, to so bad, I cancelled my birthday trip last weekend, to I just do not feel like do anything. The Lupus Headache  - nothing will get rid of but a huge dose of "corticosteroid" and even though I could barely do it, I managed to take a shower, and go slowly into my doctors office to get some medications. Not bad enough I have flares of both, but also a sinus infection plus some "wheezing" she was very concerned about. I had told her I have been "wheezing" for a bit, but just thought it could be allergies, so I didn't let it concern me much. I have an inhaler here, so this morning I decided to use it. I would not tell her that I've been having times of "shortness of breath" the past 4 weeks or so. I could not withstand another test, walk to get an X-ray or anything, so I left with injection done, called in scripts, that I have to pick up today... and got myself home.

I've had all of the signs and symptoms, from low grade fever, mouth breaking out, the Lupus Migraines, the severe fatigue, every joint, even the bottoms of my feet hurt, thumbs, all of my joints are stiff, swollen and hurt. I think I've gotten so accustomed to these stupid symptoms, I "forget" they are symptoms. I just assume they are things I have to live with. But, the one that has really set this flare apart, from every other, is the torrential "Brain Rain" not just a haze or fog... but the horror of ALL of my brain seems to be aged into the 100's or something. I can barely remember my name. I've decided I've got to make MORE lists, for the ones I already have. I cannot recall words, or remember what day it is. I can't spell words, or I forget the word I wanted to use. I have walked around now for the past 7 days in such a spell bound haze... going into a room, and not knowing why... misplacing things, can't remember if I took my meds, or a shower even. My concentration is none... I am barely able to read something and "have any retention" of what I just read. My husband "talks" to me, and I cannot recall in two minutes what he told me... I type everything wrong... misspelling, typing backwards, or just not typing right at all... There are just a NUMBER of "brain" involved things that I have never HAD such a horrible time with before. Sure I might have a bit of an issue at times, with something like a word, or the name of something. Yet, never have I saw myself in this horrible of shape as far as the brain portion of Lupus etc....

My fear, and I even feared looking it up, is that either the Lupus has done something MORE to effect my brain now.... or there are other factors such as MS, Myasthenia Gravis. I have not really came right out and talked about just how I fear what is going on to anyone other than my husband and Mom. I don't want them overly worried, but I've had to let them know that I may "act odd" or say something weird, OR I may just have to get on the sofa, and rest all day. I do have my Enbrel coming in finally tomorrow... BUT, if it has not been for HUMANA messing me around, I could have already had my infusions 6 or ore weeks ago, and I may not be in this kind of condition. That in itself is another story, and I believe I've hung that one out on the line to dry enough, that everyone is sick and tired of hearing my FIGHT with the insurance over my Rituxan.

So, today, or so far this morning, I've read more about the Lupus/Brain situation, as well as what do to, which much of which involves all of the horrible symptoms I've been having. Along with that, a variety of ways to "help" yourself with the pangs of "Lupus" and so forth.
Most of us are aware of some of the brain fog... as I had said above... it kind of becomes a ''running joke" when we forget etc.... most of the things I already do... lists, stickies, I-cal, and more lists. Making me more specific lists I think may help me. Of course as one of the articles said, if you DON"T write it down immediately, then you may lose what is was;)

I've also found myself, mumbling more, which I've "talked" to myself forever, but this is different. It is like I am almost in a hallucination of sorts. I've noticed I tend to be sitting somewhere, like the doctors office yesterday, and in my "brain" almost this odd movie plays... does not have a thing to do with what I was there for, or listening to.... yet within my mind, almost an hallucination WAS playing... so much and frightened me badly. It made me think I was losing my mind! You fear mentioning it, thinking someone will really think that the "padded" cell is where you need to be.

I find myself thinking I am between "asleep" and "Awake".... I know what is going on around me, but yet it is almost as if my brain took a quick trip somewhere else....

Which has been the most frightening symptom... Plus I find myself wide awake one moment, and within a moment..... it is just a very strange place to be..

Anyway, even though I should be either "here", writing on my book, or working on some of my Active Volunteer stuff, I think I am headed for the sofa for now. I feel like I can't hold my eyes open.... so, I shall possibly rest for now... and try doing something a bit more "prosperous" in a while....

More Greats News on the Heels of Lupus and Autoimmune Diseases

Alliance for Lupus Research and Lupus Research Institute Partner with National Institutes of Health to Accelerate Drug Discovery in Lupus

Lupus Research Organizations Welcome Big Science Push to Drive New Therapies
for Lupus Patients

We are delighted to share that the Alliance for Lupus Research (ALR) and the Lupus Research Institute (LRI) have joined the National Institutes of Health (NIH) and industry in the Accelerating Medicines Partnership (AMP) launched today to speed new paths to treatment for lupus and autoimmune diseases.... read the rest at the link below......

http://lupusresearchinstitute.org/lupus-news/2014/02/04/alliance-lupus-research-and-lupus-research-institute-partner-national

WAAD14! You Just have to "be there"! May 20 and 21st!

World Autoimmune Arthritis Day! May 20th and 21st 2014!

Mark it on your Calendar!!!!

For More Information see:

https://www.facebook.com/WorldAutoimmuneArthritisDay

Whittemore Peterson Neuro-Autoimmune Institute

More News on the World wide front of Autoimmune Illnesses... and another "term" new to me "Neuro-Autoimmune?

I just got a "newsletter" from the Whittemore Peterson Institute. It contains a great deal of the research their doing in regard to FM/CFS/ME. Of course their beginnings are from the 2 doctors that actually discovered CFS/ME - and FM as a "real illness". Most know the story about the small town in Nevada, where suddenly many residents that were very healthy suddenly, with no explanation became so very ill that they were unable to work. This "mysterious illness/syndrome" whatever you want to call it, was bringing in patient after patient to this small clinic where the 2 physicians quickly became overloaded. Years have passed since the first "signs" of these illnesses began. We have been through all kinds of phases, as patients and I can say doctors also. NO one knew much about these. Doctors thought for the most part patients were (especially female patients) were "depressed" stressed, or plain hypochondriacs. Often with a recommendation I am sure that you need a "shrink". Also it was a "waste basket" diagnosis for awhile. Doctors saw patients with some symptoms of FM, CFS/ME thus if they could not really get a good understanding of what may be wrong with a patient, they had FM. And they left a doctor's office horrified. I know I did! I was told this MANY years ago, back when it was either put upon mainly women who exhibited many of the symptoms, and were "busy" wives, Mom's, employees, "chief, cook and bottle washer" of their lives. So "stress" and "depressed" was how we were treated. No really know "reason".. not a virus, not an infection, not a flu (even though symptoms can and are often "Flu" like)... and not a whole lot out in the realms of medicine to explain it. It really wasn't until about the last 5 to 7 years, I've seen a dramatic change in how patients with these illnesses are treated. First of all, you are taken "seriously". Now, FM/CFS/ME are REAL illnesses, so you have a REAL DIAGNOSIS, thus you expect  explanations of why, how, when, what, where and why?  
Why? You also expect to be told what the "treatments" are, and when will I "get over this"... "yuppie flu" (another horrid term used)??? A couple of years back the Whittemore Peterson Institute became very well known throughout the world. They seemed to be "the beginnings of those questions, and also possibly how to get better, treatments, and mainly what it is, how did I get it? They came out with a huge "clinical trial" per se... that showed great promise to those inflicted parties. It was based on "mice" and a "viral" type manifestation, and it spread like wild fire throughout all of the social media, twitter, in news articles... patients, doctors, everyone was talking about this "answer" to these illnesses. It was a bit of a while, but after the glory came disappointment. It was told that these "trials" had not be as exact as the should have been. There were many errors made during all of these that caused for the entire study to be trashed. This "retro" virus that all had hoped answered the call, turned out to be not trustworthy, incomplete, and just brought a downer to those in the middle of these illnesses. Since then, WPI, has been doing some incredible research by many very great people in the medical world, and the discoveries that they are now making DO SHOW GREAT PROMISE! As I was reading over the newsletter a little while ago (and is the POINT to this long post, is that NOW these illnesses are being "grouped" more as "neuro-immune" diseases. In fact the WPI now has their clinic speciality labeled as "Neuro-Immune" Diseases. As I read this, what I have said for a LONG TIME, and what brought it really to hit "home" of course "immune". I've been SAYING for YEARS, these illnesses are in the same scenario and are "autoimmune illnesses". They just have not proven it, but now, "Neuro-Immune surely says it all. I told my husband I WISH so VERY MUCH, I had went onto BECOME A RESEARCHER, in these realms. If I were not so chronically ill, and taken over with brain fog, plus was still around 40 years old... I WOULD GO BACK TO COLLEGE AND GO INTO CLINICAL RESEARCH FOR THESE AUTOIMMUNE illnesses/diseases/syndromes.. it almost breaks my heart, that I long so much to be able to "find a reason, find ways to stop these, and a ways to treat those already with all of them. And I am speaking of All Autoimmune Arthritic and Autoimmune illnesses in general. Life hands us what we are so often not able to reason with... and I don't know "why" I did not more fulfill my college and so on when I was younger... plans change, you "fall" more like "trip" into love... and you let YEARS slip BY... you are 50 +, and chronically ill... thus your "research" is what I and all of you do... advocacy!!! I guess this post is for everyone... ill, not ill, young, elderly, college, high school, wherever you are, whatever you are doing, whatever your dreams maybe.... don't WAIT until all the YEARS PASS you BY... and then like myself, have to live with some regret, that what I almost feel I was "meant" to do, slipped through my fingers, like sands through a sieve. by the way I think I can attach their newsletter....I have their newsletter in a PDF... I'll try to put it on here and then let you now.... in the meantime here is their websitehttp://wpinstitute.org/index.html

Have A "Game" Plan?!! IFAA Does! Rocking Autoimmune Illinesses Right Out of the Stadium!!!!

IFAA ready to kick Autoimmune Arthritic Illnesses right out of the door!

International Foundation For Autoimmune Arthritis - Standing On Your Side of the Field!

This is one of the most incredible non-profits I've ever seen! Although "small" right now, they can just about outdo any of your larger non-profits in the way they gets things going! Another HUGE plus, EVERYONE in the entire non-profit HAS ONE OF THESE AUTOIMMUNE ARTHRITIC ILLNESS OR MORE! So as you ask yourself about things such as earlier detection, earlier doctors, labs, tests, medications and even almost more than that, EARLY EDUCATION AND COMMUNICATION can and will lead to an earlier remission, or even possible a chance of not even having anyone to deal with these illnesses again!!! From their "showing" at the White House, making a huge impact on Congress, to being able to have the ability to find other ways they can change the face of AAI's forever, this group refuses to take "no" for an answer! Please visit the link above and see just how the IFAA has already changed and will continue to change many lives!

Thanks for, A Few Thoughts, & To Your and Yours....

I'm just "stringing" a couple of posts together from FB right now. As you shall see below fingers crossed my new computer is coming today. But, as you know that is an ALL DAY affair setting it up, getting my desk back in order, transferring my files onto it from the external drive and hoping I have not lost anything.... So, I shall post a couple of things I wrote in FB the past two days, and in the morning I hope to be ready to "shine" and "scream"... well my computer to "scream" with speed, LOL, not me!!!!

So here are the posts, and I wish you a wondrous holiday... be safe and hopefully as I said in one of these "flare and as pain-free" as possible... Rhia


I just thought of one thing that I was reminded of with it being Thanksgiving Week! Some of us will be with family, friends, some home with our pets. Some of us will be right here with out online friends and family. I am Thankful for the fact that I am so far NOT lying in the hospital as I was when I was 15. I spend 7 days during Thanksgiving holidays in High School having my right knee completely cut open and the meniscus taken out. I was in traction with my leg in a huge heavy cast that was from my bed as far as it could come up in my leg to my toes. I was in that thing 3 MONTHS! Then spend a very long time getting my muscles back to where they did not look like toothpicks. So, that day, my Dad, bless his soul, came to Dallas, and forgo his turkey dinner with Mom and all the family so I wouldn't be alone while I ate mine from that hospital bed. Right now as that memory floods over me, that was THE BEST Thanksgiving of my life! And right now I miss my Dad more than anyone could ever know. He would be 91 if he were still here with us.... May all of you find that one thing you are so Thankful for.... Be Blessed, Be Safe, and Know you are LOVED! 

I've had a couple of really BUMMED days! My computer that was supposed to be here yesterday didn't make it. FEDX had not updated anything on their site until later yesterday evening. So, all day I had no clue even where it was in the delivery. It left Sacramento on Friday, and after that all it said was it was to be delivered on the 26th. I am already SO aggravated with this old laptop. I just can't do much of anything on it. It is SO SLOW, it is worse that "dial up" days I think! So, that had really thrown my schedule off. I wanted to get Thanksgiving "Cards" online out, but I have all of my cards for Xmas to make out. Plus I have NOT even BEGAN my annual Christmas Letter. I have been sending a letter in with out Xmas cards now for years. I made it a tradition a long time ago. I don't believe I've missed very many.  But I don't really even have any "software" on this old thing to do it on. We wiped this drive fairly clean and began using this computer for our music. We had Garage Band on it, and did our clips, and all of our recording and so forth on here. Then Jim can bring it in and send it to his computer where he can actually put it all together for a song. So, things like "pages"(which is like Word) and so on have been off of here for a long time. And the music files have made it very slow, but we don't want to lose any of those. Thus, we cleaned everything off we could, and set this one up temporarily for me until mine can get here. FINALLY fairly late in the evening, yesterday, FEDEX, updated their website. My computer is in HUTCHINS!!!! (YEAH!!!) So, that means it is just down the "street" from me well almost, but it has arrived at the local hub and should be out for delivery TODAY!!!! Thank Goodness! I got up yesterday and was just not about to sit at this thing and be able to not do a thing productive! So, I made my "annual" fruitcake, did some cleaning, and watched some Xmas movies last night with my two puppies... Now if the computer gets here today, then that means all day getting it set up, my desk back in order and things have way back to whatever normal is around here. My thoughts and prayers are with ALL of YOU! 
 Please be safe! I realize many may be traveling or have family traveling and weather is very bad in many places around the nation. Enjoy family and friends, have a very warm, loving and hopefully flare and pain free as much as possible holiday! And Eat a little bit of everything!!!!! We are taking Mom over to Waxahachie tomorrow to a huge buffet over there for dinner (more like brunch).  So we don't have far to travel and right now our weather as far as traveling right here is good. May all of you be blessed and overflowing with all of the things we should be thankful of. Later in the day, whenever FEDEX delivers my new computer, (I think I am still in shock) LOL!!! I'll probably be away for a bit while we set it up. But I will be "screaming" with speed when the new one is here and ready!!! WOOOOHOOOO!! I can finally catch up hopefully! 

AAI(Autoimmune Arthritic Illnesses & Our sense of smell (Odd or Phantom Smells), Sight, Hearing, Tasting, & Feeling?

I've noticed that often my sense of smell is either "off", strange, or my home, along with the outside around my home smells putrid!

I can walk around my home, as I did just this morning, and everything smells horrible! I was thinking to myself and mumbling that I really needed to "clean" because my house plain STINKS like my dogs left a "puddle" in every room! Now I know that sounds funny, and it is kind of funny, BUT in all honesty, I can walk into a room, or walk outside on my front porch and feel like my entire world is smelly. I smell smoke often outside. Which at times there are those that are grilling, or it is the emissions from vehicles. At this time of the year, people also are beginning to burn their fireplaces also. So, the smell of smoke can be truly justifiable at times in those instances. Yet, I can walk out the door, and smell everything from something "dead" like a mouse, to a "moldy" smell, to the smell of what I consider "bug spray" and the list goes on.

I have also smelled many perfumes that absolutely smell like "Raid" when I just smell them out of the bottle. Yet, they may smell wonderful once they are on someone. Now, I have this crazy smelling as I said as if my entire home smells like "the dog pee". I am a bit paranoid because I have two full grown "puppies", dogs, yet they will always seem like puppy's to me. They are totally house broken, but as they have grown a little older they tend to decide to get mad when we go out and leave them. I at times come in to a puddle of pee on my hardwood floor, which does NOT make me a happy camper. They both have anxiety separation issues, always have. Even if one of us is at home with them, they get upset because we are not both here.

Anyway, I began to do a little bit of research to see if those of us with these various form of Autoimmune Illnesses have issues with their sense of smell. And by "gosh" I am correct! There is definitely many of us that do suffer from various type of "smell" disorders. We do either have a "lack" of the ability to smell (Sjogren's is certainly one that can cause that), or you have a phantom smell disorder where it is not there but we smell it.

I've also seen people say that there sense of smell is actually "more keen" with some of this AAI's. They can smell things that are much further off than other people.

When it comes to all of our senses, smell, taste, feel, vision, hearing… they can all be effected in one way or the other by the diseases, syndromes and illnesses. I have double vision that came up almost a year ago. I've been through 3 eye specialists. Two of them highly specialized, being "Neuro -Opthamologists". After months and months of tests, lab work, and a temporal artery biopsy, they NEVER did truly FIND THE REASON for my DOUBLE VISION!! Thus they blame it on the Lupus!

I developed "Tinnitus"… of which the ENT doctor said " you'll get used to it"… there is really nothing they can do for it… you learn to "drown out" the ringing, whirling, buzzing noises…

Of course then there is the "Vertigo" - that also is not just my mind thinking I am spinning and moving… I DO spin, move and gyrate, at times without the medication, Meclazine… now I just learned a very interesting fact! There is a newer medication that came out called "VertiCalm". I saw it was for "dizziness" motion sickness etc… so I was of course once again "My wondering and wandering mind wanted to know what it was?" I look it up and it is exactly what I take that does not require a script BUT you have to ask them for it at the pharmacy, Meclazine. I've been using it for a very long time… for the vertigo, dizziness, and movement disorder. I take two every morning of my life, and sometimes when I have a bout with it, I have to take a couple more during the day. Now here it is over the counter, out from the back of the counter, and I bet it's going to be MORE EXPENSIVE, than the one I buy from behind the counter. I get like 90 or 100 tablets for usually between 4 to 6 dollars. Since I happen to find this due to a coupon for it, I will bet it is much higher than that for a lot less tablets. It will be interesting to see next time I'm out what the difference is.

So, I've touched on hearing, smelling, and tasting somewhat; along with vision.

The sense of touch I am not so sure about. I don't know that our sense of touching is really effected by any of these illnesses. I have problems with extremely "tender" skin. Sun is a huge "no-no". It can bring on a flare, or certainly make your "wolves mask" much worse, or both. Predisone, along with the other corticosteroids also makes my skin very thin. I bruise extremely easy, or just a small "knock" again furniture when I vacuum leaves terrible bruises. Some of those take months to fade. I have some that are just a "permanent" part of me.

Just to add a bit of humor to this really terrible issue as times with the senses. As far as "touch or feel" I know I have this "urge" when I go anywhere to look at new clothes, that I have to "feel" the material of everything. I am sure as a whole women do that when they shop. But, texture in fabric is a big thing when I am shopping for clothing. I believe that is just one factor of being the "female" gender.


I would love to hear from all of you in regards to these 5 senses. How if you are effected with your particular illness(es)?