Losing So Many Lately To This Hideous Disease of Lupus!

Since the 1st of January, we (Facebook friends with Lupus) have lost at least 7 or 8... or more of our Butterfly Friends to Lupus!

I just got word today of another really awesome friend, John who once again lost his battle at much too young of an age to this hideous disease.

Over the past two weeks or so, he is like the 7th person, many of then very young who lost the battle to this disease that continues to ruin our lives, take our quality of life and destroy it, and then take our life way before we should ever go from this world,

It leaves us here with an empty and frightening feeling... one day you are okay, the next extremely ill, and the next have passed away.... leaving friends and family wondering when a reason and a CURE WILL BE FOUND!


It is insane to watch so many passing away of this and other autoimmune diseases, but Lupus seems to be one of the top killers, in this realms of illnesses,

My heart and prayers go out to all of the family, friends, and Facebook friends, in which we bond with... the we also feel the loss of yet another friend..

So May John family know he is in a better place, free of illness, pain and suffering, along with Ashley, Aubrey and several others that have been on Facebook since January 1st.

Folks IT IS TIME TO STOP THIS HORRID NIGHTMARE OF AN ILLNESS IN ITS TRACKS!

We need MORE RESEARCH, A CURE, A REASON WHY OUR IMMUNE SYSTEMS SUDDENLY GO NUTS AND TAKE OVER EVERY PART OF YOUR LIFE!!!!


May all of them rest in peace... and May all of the family and friends find peace and comfort knowing their loved ones are no longer suffering....

Chest Xrays, Cellulitis, RA, Swollen Joints, Fingers, Hands, Unable to take my RA meds, Lawns, Neighbors, and Dealing with all of the daily stuff of Life

Well once again we face another Friday! This week has been anything BUT GOOD... in about 4 billion ways, I thought I may just lose my mind, or the tiny bit of it I thought I had left.... FINALLY and who knows for sure but Urgent Care called yesterday afternoon and after over 2 WEEKS of back and forth from them to the Rheumy, I think they have the correct Order for the Chest Xray!!!! Sometimes miracles "can happen"... although lately NOT for me! I believe I mentioned I DID FINALLY FIND a Surgeon who is thankfully just over in Waxahachie to probably remove this lump on my left thigh. But, what I have NOT told the doctors at all, is that I have this other one that formed several weeks back on my right thigh, in just about the same spot. But, since I am seeing the surgeon a week From today, I felt I would bring it up then. BUT< once again I ran into another issue... now that lump that never really was "red" or what they call "agitated" on the outside, or really was never sore, now in the past few days, had become more red on the outside of the skin and it is extremely sore... and so it the one on my right thigh... not really red but very sore to the touch. Since I still have a week before i see the surgeon I called my PCP this morning and told them to let him know, and that I felt I needed another round of antibiotics until I can get in to see the surgeon. I fear now that the infection could be growing outward, and that is the very last thing I need right now... so I am waiting on a call back to see what they say. I hope he does not want me to come in... there is really nothing more to do, but get back on the antibiotics, and wait to see the surgeon,... and then I have to run over across town and get that chest Xray I hope done today. PLUS I DO have to take Mom's care to be inspected today, since they have made the changes in how we register and inspect our vehicles in TX, as of March 2015.So, we can't get the registration sticker until I get it inspected.... but not a big ordeal, I just have to go get her car, and take it to be inspected... I DID get the "bug granules" finally yesterday and I broadcasted them from front, back and sides all over my lawn. I HOPE that curbs the fire ants, which I have already put stuff on all of the mounds, but this other stuff also gets rid of other ants, fleas and so forth, which I can tell what I put out in the Spring has stopped working... thus I needed to do it again... ONE GOOD NOTE FINALLY... OR I HOPE SO... MY ECHOCARDIOGRAM CAME BACK THAT MY HEART FUNCTION IS "BETTER" A BIT, THAN WHEN I HAD ONE DONE IN 2011!!!!! NOW THAT DID MAKE ME HAPPY! But, as I told Mom, I "hope" the heck it is "mine" and is accurate!!! Knowing my luck, hell it could be read wrong or someone else's - anything is possible with me and my stuff.... nothing is usually ever that easy..... but if so, that means I should be good to go for the lumbar surgery dammit if I ever get RID of this damned whatever is going on with the lumps on both thighs... there is no way, no how they will do surgery on me until I am all clear of that, along with now I will NOT be able to get back on the Orencia or the Xeljanz UNTIL I am all CLEAR of infection!!! WHICH MY RA IS so MUCH worse! Both of my hands, wrists and fingers, I can barely use... I have hell from opening a jar, a lid, or anything, along with I can't carry stuff as well... my hands are just so swollen, even this morning worse than ever... my ankles, my shoulders, neck everything to do with my "joints" seem to be so much worse that ever... and I am extremely concerned... not only am I so stiff and swollen, the pain is bad again in my hands, fingers and wrists... PLUS I GUESS since my neighbor had chosen to all of a sudden ignore my existence... O am going to have to fix my lawn mower (the rope broke that pulls it to crank) fix that, and mow the lawn myself... I am sick and tired of seeing it like this, and I will be damned if I ask him... he has a "bee" in his bonnet over something, I have NO CLUE what the problem is... but my yard looks like hell and I intend on getting it mowed dammit... well I have to get dressed and get going... or I will never get all of this crap done... more later, and happy Friday to All!

"Things Remembered" - #HAWMC - WEGO Writers Challenge April 8th 2015

This is probably one of the simplest of all things for me to write about.Without one doubt my "Grandmothers" blanket that has satin/silk border around the entire thing is and always will be something near and dear to my heart.

It was hers and she kept it in beautiful shape actually for me. I have to say I've worn out MANY blankets with the satin/silk border on them. So even though this one that was my Grandmother's is not the "original" it of course still holds the many memories of me rubbing the silk on my blanket. I've kept them each for many, many years. Once I found one, that had the exact type of "satin" border I loved to rub, I would keep it until every little bit of that was rubbed off before I would give it up.

I have "rubbed" silk on a blanket as far back as I can remember. I guess even before I can recall it, Mom said I did that rather than sucking my thumb etc. I found it a bit embarrassing to say I still do this, and here I am just over 50 years old. but, I do it out of being stressed. Or, if I am sick, or down with a bad flare, then I want that blanket. I will rub that satin anytime I am down and out, stressed out, feeling lousy, the silk is like something that calms me down.

My Grandmother passed away over 12 years ago, yet I still have such incredible memories of her each time I put that blanket on my side of the bed.

I also have another item, that is about as near and dear to me, that in fact is also something from my Grandmother,  She had a cookie jar that was covered in different kinds of "cookies". It was ceramic and has a "walnut" for the top on the lid. I LOVED that cookie jar from the time I was old enough to watch her bake in the kitchen. She just about always had home made, from scratch cookies, almost like a tea cake, and they had one "whole half of a pecan" in the middle of each cookie.

I had said for many, many years, that if something happened to my Grandmother I wanted that cookie jar. There were many beautiful pieces of china and silver that we had given her over the years. Yet, that cookie jar held and still holds so many awesome childhood memories for me that take me back to a much more serene, simple time in my life.

So, after she passed away, my Mom made sure it was saved for me. Along with it, was two of my Grandfather's fishing reels, because I fished with him and Dad when I was young, and of course the blanket. Also, I have a completely by hand done quilt that she also did for me.

So, as time continues to pass by, faster it seems with each day, there are a couple of "material" items that always help to bring back those wonderful times when I played under the shade trees at home in the Summer with my table and chairs, or fished for "crawdads" in the ditches around my Grandparents house, watched Dad garden, take care of quail he used to raise, go fishing, go to the deer lease, vacations, and many, many incredible memories at my Grandparents home, from all of our family holiday dinners, to just how wonderful it was to have a place that almost felt like a refuge from life when it seemed almost too much to bear. 

People Taking Advantage of those that are Ill, Injured, and Life's Ridiculous Ways

Believe me everywhere I turn I am getting "chastised" for the accident. I am so sick of the "rich" and I am speaking of the "filthy rich" and the "government" pressing every nickel that we DO NOT have out of us. I had another incident this morning, that made my blood pressure rise 50%!!!!! Why the hell do they always want to take away from the sick, the people that already are living BELOW POVERTY LEVEL by 300%???? Ifaa Autoimmune Arthritis-Anthony you had better believe and you know how I am I WILL NOT stand around and allow them to just push us over the damned ledge and sink us like a damned wounded ship. I've had enough of being used, abused and taken advantage of. Even the business about this "new" doctor.... I can already tell he is a scam artist and one in the worst way. The very sad thing is, that HE GETS BY with what he does and is getting rich off of people's misfortune!!!! I can guarantee he loves seeing patients walk in that have been injured at work, or hurt in some kind of an accident of any kind. He "acts like" he is your best friend when all the while he has his fingers crammed in your pockets while he stabs you in the back. I don't care what anyone says, I can smell one of them, further than I can throw them... I have been more than once "used" even by the medical profession. The things I tell people sometimes, they just cannot fathom they happened, but they have. That entire ordeal about this stuff I went through due to the double vision, with that "specialist" in Dallas was no more than a freaking scam artist. He was literally running 50 to 80 PATIENTS A DAY through his office!!!! He had like 50 EMPLOYEES and took up an entire FLOOR OF A HUGE OFFICE BUILDING. Then he did a damned "surgical biopsy" on about every patient who came in. Plus he frigged up the nerve in the side of my head AND left a scar, which there should NOT have been one. Then to stand in that OR that morning, with me still on the operating table, and BLOCK out everyone to SHOUT, SCREAM, and THREATEN the nurse that was supposed to be taking care of me, it was literally insanity!!!!! If it had not been that so happened the anesthesiologists was still trying to awaken me, so he was with me. I would have been in that OR ALONE with that raving lunatic... and they even called security on him and he punched one of them in the face!!! So, did I sue??? Hell no... but I did report his butt to the Texas State Board of Doctors, and it went on for over a year... and the Board continued to update me, they even took my statement and I had to have it notarized... and they even asked me if I wanted I could have went to the hearing in Austin, but I was too ill at the time to make that trip. So, I am not one to just call out the hounds, and go for the throat when things happen... BUT I ALSO WON'T STAND AROUND AND BE STOMPED AND TREAD ON LIKE THIS EITHER... I just am so damned mad I could spit... I cannot fathom the audacity of some of this crap. And then people stand around and LIE to save their own skin. I've had 3 or 4 occasions in my life, I probably should have brought in the hounds, in other words, sued for what was wrong and unjust, BUT I DO NOT and still don't believe in doing something like that unless it is truly something like what is absolutely wrong.. if I walk into "Wendy's" and drink hot coffee and burn my mouth, well it is my own crap and not the fault of who served it, but when someone else is truly in the wrong, and they have forever altered not just the one person's life, BUT EVERYONE AROUND, mine, my Mom, his Mom, my family, friends, our marriage, MY HEALTH, then things need to be made "right", yet still we are being put through a meat grinder and ground up like WE did something wrong... that is what just burns me up... rather than feeling like the "victim" I feel like the "criminal".... sorry guys and gals, I've just had way, way, way MORE pressure and emotional drama, and mental drama, and physical drama than I can stand this week... I am sick and tired of feeling freaking abused. I am a person who believes for standing up for people. If I didn't then I would not be an activist, a voice out here in the nation, doing advocacy work, and being an Ambassador. I would not being writing letters to Congress, to the government, to those who represent us as people and giving them so much of my time, my brain power or what I have left of it, and all that I encompass. I do ALL of it because I believe in what is just and right. I believe all of us deserve a "qualify of life". I believe we deserve to live without these illnesses eating us alive every day, with pain, with stiffness, with fatigue beyond what anyone can believe, beyond the ability that most of us cannot even leave the house and go to the market, or shopping, or vacation that we don't suffer for days or weeks because of these illnesses. I WISHED I would have had the foresight to go into research or into the medical field in some way, before I got ill myself. I feel my "calling" has always been in the realms of medicine somewhere, yet I never really got that opportunity to live out that thing I felt should have been my life... a calling to help find a cure, medications, to help people feel better, or to be free of pain and suffering.... I had two other times that I should have "done something" ... and I didn't... the first was when I had the 4 wheeler accident... that was absolutely the fault of the manufacturer that the throttle stuck wide open and I had no "kill-switch" at the time, or no way to break it, once it stuck wide open. I was 26 years old. I lost most of my top lip, I lost a part of a front tooth, I was battered and bruised, and had to have two plastic surgeries. After that I was always and still am very self conscious over the scar on my top lip. I 've lived through that nightmare over and over again.. we should have went after the manufacturer of that damned thing, and at the time, just didn't really understand at 26 years old that I could have. I didn't die, and I was "wounded" which did take its toll on my "emotions" for a long time. For years I would hyperventilate when I got in the car. If I drove I was okay, but if someone else was driving I would have flash backs of the accident. The next time was in 2010 when the hospital ER almost sent me home, finally "admitted" me, and took out my gallbladder.... within 24 hours I was so ill, they thought I was going to die honestly. They rushed me to Dallas at Methodist, where I underwent I am not sure, at least 3 or 4 surgeries, for a "nick" in a bile duct. The "bile" and poison from my body was actually leaking into my abdomen, and into my blood stream... they went in 2 or 3 times to try and "fix" it... finally the 3rd or 4th time they did repair the place it was leaking into my abdomen and stopped the poison that was pouring into my body... but I had tubes running out of me for weeks and weeks. I came home with them still in... for several weeks. In all, I spent over 6 weeks in 2 hospitals, then had a heart attack the day I was supposed to come home from Methodist. I stayed another several days and had to go through all of those tests. Fortunately, my heart doctor said it was almost like what they call "broken heart syndrome".... all of the time I was ill, and many times feared I might die, took its toll on my heart, plus I gravely feared coming home because I was still so sick, I had not eaten one bite of food for 5 weeks!!!! They had something like 7 IV's going into me the entire time, and one of them was a special mixture of nutrients they gave me because I literally could not eat a bite of anything. I didn't even drink at all. The first thing I drank was some Coca-Cola a couple of days before I was to go home. From there I came home and had lost like 30 pounds, and I could not stand the smell of food at all. I went another couple of weeks living on drinking coke, and I didn't eat much of anything. Jim even brought home a load of "honey wheat" bread and I could not stand the smell of it, much less eat any... Anyway, come to find out that "NICK" in my bile duct happened when the surgeon took out my gallbladder!!!! LET'S JUST SAY HE WAS LET GO VERY QUICKLY, and very quietly. Even my own PCP has mentioned it since then on several occasions they felt I would not live, and at first they had no clue what was wrong with me. Even the issue of taking out my "gallbladder' may not have had anything to do with why I was ill... there was something very wrong, and the surgeon went for the gallbladder first, but no one has really ever came out and said why I got so gravely ill so fast, that I had to call 911 and be taken via ambulance to the hospital, and then why I was just totally "out of it" I was in so much severe pain, and so sick... then only to "seemingly" get better after the gallbladder came out, only to become almost gravely ill 24 hours later... it is a mystery that no one may ever solve and I should have racked the doctor over the coals on that one, because he DID NICK that bile duct... BUT at the time I was so terribly sick, no one thought about any of that... until months later after I got home, and very slowly got back on my feet... it was truly almost insanity.... so when I say I tell my stories and people are just thrown back by what has happened to me, they are all true, all happened, and now at times I may act like those things don't haunt me, but they do... my way of dealing with all of it, is to help others, be the writer that I am, blog, and try to stand up for those who are going through some of the same things or other things also... I realize even though I try NOT to think about it much, that my chances are much higher of passing away than some... I've had two heart attacks, I have RA and Lupus, osteoporosis, Sjogren's.... and so forth... so for all of those my chances weigh much more in the realms of not "making it" to a ripe old age, than some... all of us that suffer from these horrid autoimmune illnesses have a much graver risk than others.... Love you guys and gals... Rhia   

PLEASE Start COMMENTING!!!!

I have lots to catch you up on over the next couple of weeks. I promise I will. I am on a new RA/Lupus medication, that is not a biologic. I will explain what my Rheumatologist told me, and how he has come to the conclusion, that if I can, maybe trying to stay away from a biologic, other than trying Orencia, would help to possibly reduce the number of infections I continue to get. I had been ill from way before Christmas last year, and was ill when I went to D.C. at the end of March! I was having a flare, but I was also I believe even then developing bronchitis that turned into double pneumonia. But, until I was running 104.5 degree temperature and almost out of my mind hallucinating from the high fever (I NEVER have a fever)... thus now I certainly know what to look for if I expect I might be having a new infection coming along.

I am so grateful to ALL of you who come here and read my blog posts. I know you do, and I see who comments and who does not. I will say that up until the last couple of weeks, there was not a good way I could see the comment if there was one, and I certainly had not a good way to see who commented at all, and what they said.

Now Blogger has made some much needed revisions in the Blogger software, and I just have to catch up as to what they have changed, and how I can use what they have done to make my blog even much, much better.

We have a few more things to work out with doctors, finding a "good" pain specialist for Jim and a Neurologist who will take his insurance and take care of problems as they arise. We think we may FINALLY have a couple of good referrals, but we shall see. When it comes to doctors, tests, hospitals, insurance companies, and pharmacies, you never know what the outcome will be.

I am still working on getting my jawbones strong and well enough to withstand the little mini implants that my dentures will snap down on those and be able to let me eat with them in and they not especially the bottom one coming falling out, I am getting there, but it is just taking patience to allow those all to fill in and heal before he can put those implants in and they stay strong enough, and my jawbone strong enough to hold them in. So, I still have at least until November to do X-rays and see where we stand.

I have just completed being a "Consumer Reviewer" that I had been nominated to do and then was asked if I wanted to do it, and of course I said yes. It was a true learning experience but it has provided me with lots of new avenues of advocacy, ambassador, and activist can mean, and how much my opinion and all of our opinions Do MATTER!!!!

On Monday, Jim's birthday.... the 22nd we have an appointment at our lawyers office to go over what will be going on for the depositions. Then on Tuesday we go back in and give our depositions.  Since it is in Ft. Worth, our plans are to stay the night, and possibly go out to eat or something in celebration of Jim's birthday... and who knows... we maybe also celebrating the nightmare of this wreck stuff to finally be coming close to an end... and it coming out in our favor in a very huge way!!!

It is a bit nerve racking, thus I have not talked about it much. I just felt until we are close enough to possibly know when we will know the outcome. So keep us in your thoughts and prayers, as Monday and Tuesday are very significant for us in regard to possibly getting favorable results from the law suit.

I shall put on more tomorrow... as I get some of my other
chores out of my face...


Hugs, Rhia and by the way.. once and again, thank you my dear friend for taking a moment to post here :)                                                                              

Doctors, Patients, Medical Staff.... We Must Stand Together, Hand In Hand... and NOT Allow this "ship" of Medical Needs Sink

In this day and time, when SO MANY of us NEED doctors, medications and care, of the very best, what happens...POLITICS happen! I realize the VA has been an extremely huge mess for many years. I had watched my ex Father In Law go through that entire "system" when he had a brain tumor, and it is insanity. But, Medicare and ESPECIALLY the "Medicare Advantage" Plans are in the realm oer ever WORSE than the VA's nightmare. Our physicians are falling out and "opting out" of taking anymore patients by the dozens. In TX alone we have the HIGHEST RATE of doctors stating they are opting out.. because they are NOT getting paid, OR like a doctor told me, it literally took him 2 YEARS to receive payment for two surgical procedures that were done, and it was not until it WENT in front of the Cort of Appeals, the judge FINALLY paid him what he was owed. Of course what about all the time he was waiting to get paid? Who is "soaking" up these "unpaid" and underpaid bills the physicians wait literally for years to get paid for???? So, when you begin to "hear" the real stories of the doctors and medical staff that are there everyday working in the trenches, with the ridiculous amount of red tape, tangled and mangled "referral" for this doctor, and a "referral for this one, and another one"... and it goes on and on. And where are we when all of this "Waiting" is going on???? The patient suffers also.... somethings cannot and should not be put off due to "money".... so it is a two way street.... I don't blame the doctors for wanting to "jump ship" yet I also cannot fathom having honestly to CALL 32 DOCTORS OFFICES as WE have this week and NOT ONE will take the "State Funded Care" that Jim has to be on now, until settlement comes in from the wreck. So, even though this is a "state" by "state by state" situation, it is all the same! Patients suffer, the medical professionals suffer, and those sitting in the "big house" on the Hill are not "concerned" because they know THEY are taken care of the rest of their lives. I know there are some "good people" in Congress.
There are some that are fighting day and night, tooth and nail to CHANGE, UPGRADE, get patients taken care of in a manner they should be, but also get the hospitals, all of the medical staff, and doctors paid what they are truly "Owed" .... I am enclosing a part of the AMA Network Newsletter I get Monthly... down on the side there is one article talking about just this... but I feel you will find this horrifying when you begin to really take it all in.... where will "Medicare" being in 10 years, 20 years, 50 years... I doubt our kids will even see anything called "Medicare".... if we as a country continue to allow this "bad" business to go on... ALL of us shall suffer needlessly....





http://www.patientsactionnetwork.com/lets-work-together-to-fix-medicare-now/

In Memory of A Very Young Soul - Taken Much too Early from RA... May you forever be at Peace Ali...

It is with GREAT sorrow that we at IFAA report tonight that one of our volunteers, and RA patient, Ali McKenzie, passed yesterday from heart failure due to Rheumatoid Arthritis. Ali was not only a young lady, she was an intricate part of both World Autoimmune Arthritis Day 2013 and 2014, standing in without hesitation to run many of the live chats and ensure guests were well taken care of. Ali, we at IFAA are heartbroken tonight, and want you to know you are loved and will be sincerely missed.

Autoimmune Arthritis diseases are SERIOUS. Please learn more and choose to understand it's not the same as "arthritis".

This is just too difficult to believe. I had only gotten to know Ali for a few months, but with her living near my daughter in and around Corpus, we talked and got to know one another some. My heart just breaks as I find out she has passed away due to complications from RA that caused heart failure. This young woman had so much to contribute and was a talented lady of graphics, and of these illnesses and so much more. The world will "miss" her, especially "our world" of the IFAA, and all of us that she had touched during the time we have known her.

May you rest in peace Ali, and know you are so greatly missed by many. Rhia