Primary or Secondary Sjogren's - Not getting enough attention, research, medications and answers!



 
http://www.sjogrens.org/




I REALLY have been pushing about Sjogren's now for a long while. It seems I never REALLY had ANY of my doctors take it all that seriously, even as many times as I brought up the dry mouth, dry eyes, all of the mouth lesions I had and so forth. Then when only about a year ago, I began having my teeth literally rot off at the gum line and fall out, I began to see them a little more concerned. YET, I am STILL THE ONE who really pushed for the medication, which for Sjogren's there is only two. I tried both and am on Pilocarpine and have been for a long while. I spent several years chewing gum with no sugar and the Xilytol or however it is spelled in it, because it was supposed to HELP with moisture in the mouth, used eye drops and still felt like I cannot talk very long without being hoarse and sometimes losing my voice, or if I go anywhere, I have to talk something to drink... not even to the Wally World, and if I am going to shop, that means picking up a bottle of diet Sunkist, or green tea or something, so I can drink it as I shop. If I get in the car to go anywhere very far away from home, I go with a drink and gum. Well, of course ALL of what the few teeth I had left, by the time we finally found out how much damage was done, did make little difference. The "complete surround kind of special X-Ray" of my mouth, teeth, and jawbone, showed 99 percent of my teeth already going to rot out anyway. Thus as many of you know I went through the torture of having the rest pulled, fitted with dentures, of which AGAIN due to the Sjogren's, the bottom ones won't "hold" at all. You also need some "moisture" to help keep them in... the top ones do fairly well. I guess I have enough with the "suction" of them, along with the powdered Fixodent that goes on them, for the most part they stay in fairly well. So, I had to wait at the very least 90 days after they were all extracted before we could even think about the "mini implanted" little pins that my bottom ones will be fitted on, after they are implanted down into my jawbones in 4 places. Then my dentures will be "modified" to fit down on those pins which should hold them into place. I also found out, that the top ones they "usually" don't pin, which I thought they did. BUT, if mine won't stay in as well as they should then I look at putting 4 MORE on the top!!! Which will be ANOTHER OVER $600.00 FOR EACH PIN!!! Of course I still have the "oral/maxillary fissure" which sounds horrid, but a small hole as I have said before between my mouth and sinus passage caused by a root to pull a hole in it, when the tooth was extracted. So, that also is contributing to the top one coming a bit loose at times. Air can get in underneath it from that hole and then it makes the "grip" it has to the pallet of my mouth break loose. Anyway, back to my issues with Sjogren's. I REALLY feel as much as I PUSH for RA, Lupus, Raynaud's, Sjogren's, MS, FM... and other autoimmune illnesses and/or rheumatic and arthritic diseases, that Sjogren's needs to truly be addressed much further also. When it can truly cause as much damage to vital organs, eyes, mouth, teeth, stomach lining, the esophagus, swallowing, drying any "form" of mucous membrane, plus now I read that there is about a 50% CHANCE OF DEVELOPING NON-HODGINS LYMPHOMA, if you have Sjogren's! Women, of course tend to me at much higher risk due to the Sjogren's being Autoimmune in Nature. So, as I begin to think about my new book that I shall be writing on over the next year or so, and doing my part as far as helping to be a voice, to advocate, to be an activist, volunteer and Ambassador, for I feel ALL of those are very crucial also, I am going to be trying to learn a great deal more about Sjogren's, both primary and secondary. I also would love to hear from any of you that have it in either way. I am going to post this on my blog (by the way I am waiting to see some comments and posts from you guys and gals also)... and would love to have some of you jump on the band wagon about Sjogren's. It can be a highly dangerous, and sometimes deadly illness in itself. Plus you can also have Celiac Disease due to Sjogren's too.

Holidays Upon Us - Feeling Lousy - But trying to "Put on a Happy Face"

Just about every one of us know this dilemma. We try our best to make the holidays a special time of year. Whether it be the upcoming Thanksgiving and Christmas Holidays, or the others during the year; none of us want to "ruin" our family and friends holiday season.

So, we often put on that "Happy Face", and try to hide behind the mask of pain, fatigue, stiffness, swelling, and all of the other horrid issues we put up with physically, mentally and emotionally during the year and especially during the holidays.

I am headed out for now to have my pain pump refilled, so I shall finish this later this evening. But, I do want to say I pray everyone will have a safe, Happy and a reprieve from illness for the holidays.....

Rhia

Have a Wonderful Holiday!  

 

 

SECOND PART!!!!!!!!

As promised I am "here", just a bit later than I thought I would be. It has already been one helluva week. Between 2 days of doctors appointments, getting ready for whatever kind of Thanksgiving we are having (not in a bad way, just seems thing keep getting changed around), the entire ordeal about Jim, the accident, all of the ongoing and going and going about doctors for him that either are just NOT accessible, OR they are total jerks and quacks. Talk about some "scheming". I found out quite a bit more on this whole thing of getting things taken care of with doctors that are NOT on the up and up. 

Speaking of... the up and up.... Something happened today while I was at my pain doctors office in Dallas having the pain pump refilled. Of course it is NO secret that I have been in an insurmountable over 5 to 7 days of unrelenting pain. I of course mentioned it to him, and thought he might take the "hint" to either up the pain med in my pump (which can be done) OR just allow me to take my "breakthrough" medication a bit closer together, at least until I am over this damned hump of pain. It is just insanity and it is driving me over the insanity brink for sure. I did get a huge shot of Solu-Medrol yesterday while I was at my PCP office for a recheck. After telling him and then I asked about going to the corticosteroid injection at the office, and then a 14 day step down dose of prednisone, he said yes, most certainly we can try... thus we did. I seemed to have been a bit better this morning. I was able to stand on my feet almost without wincing in pain. But, as the day wore on, between the drive to Dallas, not getting to really eat, then going through the entire refill crap, and of course driving home... Then a "hog for punishment"... I decide to go out after getting home, and do a bit of my "coupon/sales" shopping, which I knew was probably a mistake and really stupid honestly. It was already almost 4pm, I was exhausted in every way from mental, physical, emotional... you name it... but I did manage to make my way down to our local Dollar General and pick up a few things that were "crazy" on sale. By the time I got home, I was just totally wiped. I had to let CVS and Wal-Greens go until maybe tomorrow, and I may try for Family Dollar, but I am not so sure yet. 

I will NOT shop on Thanksgiving, sorry but I think that stinks to the high heavens, that anyone in retail makes employees work on a major holiday!!! If everyone does not get what they need by Wednesday, then they can just do without it for one day!!!! It irks me to the ends of the Earth that they open those stores on a holiday like this one. Anyway, of course "people" will go, and if they come, of course that is money in their pockets, so open they are.

And you can certainly forget me getting out on "Pitch Black Friday"... I am pretty "hair brained" at times, but being out at 2am in the morning to shop, is just not what I call "fun"... Now IF we were headed for WINSTAR, now that I WOULD GET UP FOR! :):):)

Plus in all honesty, I don't have a huge family to buy for anymore... and sometimes it has become easier as the kids have grown up, and like my daughter, has a family of her own, to just send them money, and let them get what they want, need, and like. I swore when I saw my parents do that, I would NEVER ... I always believed in getting a present for everyone... that is partly what made the holiday, Christmas. But, as I have aged, and the kids grow so quickly, it now makes sense as to why my parents, and their parents did it. 

I really should be writing some words of wisdom for those of you who are looking and searching for "answers" in how to "survive and thrive" during the holidays. I am speaking of course at the moment about those of us with chronic illnesses, and chronic pain... from the autoimmune diseases, to chronic pain, migraines, CFS, FM, and the entire gamut of these that cause us grief most every day of our lives. I think I have truly discovered why I love to make a trip to the casino every once in a while. It is because once I step into those doors, until I step out and get in the car to come home, "illness" flies out the door, and stays out until I leave. It is the people, the noise, the lights, and most of all, your mind or for me, my mind is "clear" for a while. I am NOT thinking about medications, doctors, tests, prescriptions, pharmacies, people that are just plain stupid, lazy and don't give a damned that don't need to be in the business of health care at all, if they DO NOT LIKE PEOPLE!!!  I hear it and see it constantly... they either just don't give a damned about us as patients, or they don't really want to be there, ... but I see it more and more from all walks of what the medical profession is supposed to be... greed, laziness, no training, not doing their jobs, and we do it for them... it just makes my blood boil, when I hear that "tone" on the phone. You know, that one on the other end who could care less about my needs as a patient and what THEY should BE doing and they DON'T!!!! 

Anyway, so to step into that huge building that has NOT ONE WINDOW in it... NO CLOCKS, and every kind of sound, feeling, sight, and emotion rolls into those slot machines while I am there... so it is not really the "gambling"... Lord knows I DO NOT have "gambling money"... but it is the get a way from it all. Even if it is just Sunday, and we don't stay the night, still it is a rest from the daily mess. I should "coin" that phrase, "It is a rest, from the daily mess." to put it lightly.

So, for me, honestly, I am in so much pain, even as I type this I am wondering why the hell I am!!! My wrists, fingers, elbows, shoulders and neck hurt so badly all I want to do is sit in the floor and cry, cry, cry, cry.... but then I would have a Migraine, thus that is not a help, maybe a release, but certainly not a cure.

I have "lots" of advise about how to "help" your holiday run smoother, but everyone has their own way to handle it. Some just say NO... some stay home, some go out to eat, or to a movie, or to the casino... for some it is being alone and for others it is being with family and/or friends. For some it is "giving" of oneself, and serving at a homeless center, or church to others not as fortunate as many of us. So, you have to "dig deeper" within yourself to figure out "how to survive the holidays". 

Lately, I will say for me, I have been extremely fortunate, and found some incredibly super bargains on a few outfits, a pair of shoes, some leg warmers I found today, and also racked up some savings on some new eye shadow, mascara, eye liner and I even bought some "false lashes".. but it has been years since I tried to put them on, so I have not braved it yet. So, for me, between reading some really great "beauty" tips, especially those that are truly inexpensive etc... and get a few clothes for a tiny bit of nothing... (I've probably spent about 50.00 on ALL of it)!!!! Between "mega-markdowns", super sales, cashing in on coupons, I got a pair of 80.00 shoes for like 10.00, bought about 7 or 8 tops for about 15.00 or so, makeup around 10.00 leg warmers 2.00!!, plus a few other odds and ends... but I have not spent hardly anything for all of it! So, that has kind of been a "new release" for me... finding ways to have "nice" stuff, without breaking the bank... the better the bargain, the happier I am honestly. So, when things are too much to bear, I open up an email from Total Beauty, or a couple of others I get newsletters from... and even do a great deal of DIY, skin, hands, feet, nail treatments... gosh sometimes we do not realize how many things we already have in our home that work great on skin, hair, nails and so on... so I look for those, and give them a try... if they suck... they suck... if not I am not out anything... 

Okay well, it is midnight, and it's been forever since I've stayed up late like this to write... I am hoping it will help me, and if we are lucky, maybe you might get a kick out of reading it....

Happy Thanksgiving, Rhia, Jim and the family











The Good, The Great, The Days you feel like NO ONE Gets IT!!!! I CANNOT BREATHE

I've just about had it with everything. I cannot stand when someone wants ME to be at their beckon call. But, when I do not hear a word and am suddenly "cut off" it seems, I cannot just hop up and fly off for 3 or 4 days for an event. I am really upset, hurt and pissed that I am "used" when they want me. Then they get me all hyped up to make another trip that is supposed to be the first part of December. Now I cannot get a response by email at all. It is like I am a "stranger" and Don't Exist... but if they need me in the future it will be expected for me to "jump" up and do exactly what they want and when, and fore go the thought that I am chronically ill, and I can't just take off at a moment's notice. And if I find out ANY of my "SO-CALLED" friends have had a thing to do with it, I will really be peeved.... but I can see a couple of them "climbing" the ladder of "fame"... by running over others to do so... anyway, I am just about finished with it all. I am going to take all of next year, or ever how much it takes, which maybe a year, less or a bit more, and write my book. I am sick of putting it off for "trivial" pursuits that now seem like it does not matter much what the hell I bent over backwards to do and help out with. I am no more than someone that is taken advantage of due to the fact of my passion about helping others. Then I am scooped up and heaved in a corner when they are "through" using me. I have been having horrid, night terrors, now for about 2 months or more... and last night really told it all. It was so bad, I was screaming and crying so much, I woke Jim up and he had to come out of the bedroom to check on me. Then it took me almost a half hour to truly settle down and figure out it was a night terror and not real. Yet, it did finally get through to me, when in my nights sleep, I am being put down, picked on, cast away to the sides, and everyone ignoring me, treating me like dirt, so badly that I could not even breathe... which woke me up, because I felt I was literally suffocating... and could not breathe... I am being "drowned" by the very thing I loved to do the most... well 2nd to my writing and blog... and that is my volunteer work... so I am bowing out for the most part, to allow those who choose to cram their "high heels" in my back as they walk all over me... (I saw this when I worked for a woman boss)... petty jealousy, wanting to take over and get credit for everything, taking someone's else hard work and saying it is theirs, and the subject matter goes on and on... well, I am pulling those damned "heels" out of my back, I am going back to write my 3rd book, keep up my blog, and keep to myself... so I may not show up or say as much here especially after the holidays are over. I feel I've been "used and abused" enough, and I am freaking sick of being tortured during my waking hours and it causing me to having horrid night terrors... it is time to get out of that "ladder climbing" crap....

Some of you may wonder why I get "caught up" in all of this. Well, for one thing I take my "advocacy", "Activism", my "Volunteering", my writing, blogging, and being An Ambassador, as well as a "general spokesperson" for those with illnesses, chronic in nature, those that we know will NEVER go away more than likely in our lifetimes, and so my dream is to "build a bridge" to future generations where they WILL have answers, as to why, what, how, when, where... and possibly a way to just say NO, to some horrid, chronically painful, life shattering chronic pain and illnesses. So, whether I am writing a blog post, or posting something in Facebook, or reading someone posts... whether I am "helping" a group, or Foundation... whether I am trying to help several causes and Foundations by "lending my voice and own personal experiences to them, in order to get OUR POINTS across to Congress, to the nation, to our own communities, even to our family and friends, when I am doing any and all of that, then I am serious about my "job". I don't take being an advocate for others lightly. I take it as I am trying my very best to try those out there, that either can't step forward, due to family, illness, lack of funds, or any number of reasons some people can't "lend a volunteering hand". There are those that are "shy", or they are raising families, or they are just too ill, to be able to either go to a Congressman's office, or send an email, and for all sorts of reasons people sometimes are able to get involved in that realm.

I can totally understand, because being a "voice", being assertive, putting your heart and soul on the line to speak with a member of the House or the Senate, or to ask for money for research and development for those who are researchers and may have the golden key some day to unlock and unleash something powerful enough to STOP the pain and suffering of RA, Lupus, Sjogren's, Osteoarthritis, MS, FM, CFS, MCTD, and the other host of autoimmune illnesses, or Lyme Disease, Cat Scratch disease that now has entered as a possible "means" by which some of us "got" these illnesses .... whether that is true or not, we need the people, researchers, money. the backers with funds, the corporations and foundations... the CDC... gosh the list is endless.... but we also need YOU and MYSELF. We MUST put our voices out there... if they "squash" us and tell us to get out, then so be it.... There will be yet another person that may not dismiss our "calling" and is willing to watch, look, and listen... 

I have been contacting my Senators and Representative (Federally) to invite them to an "Arthritis 101" meeting in DC the first week in December. Some of these folks are new to Congress, and we desperately need to "inform" them of just how important our medications, such as biologics, our not being delayed in getting a diagnosis, of getting treatment, and how critical it is for all patients with these illnesses have a fair chance to try and either go into remission, face less flares, not have to wake up every morning of your life, with stiffness, miserable fatigue, pain, and yet another day's fight to see who will when in the end... Will the "illness" take over all our spoon and then some, or will WE remain victor that day, and have spoons left over for the next day.

Life is so very, very, very SHORT!!! Many of us by the time we are about 25 years old, begin to realize that "forever" is not all that long... the 10 years, 15 years, 30 years... it all goes by too fast. We go from completely helpless as an infant, turn around and we are crawling, walking, and running. Turn around again, and we are driving a car, dating, and in college... one more turn and we are parents, raising our kids, and in the next turn they are grown, with kids of their own, and we have been out of high school for decades. You then begin to see "classmates" that are in the obituaries, or their parents are. We see the grey hair where the dark brown, blonde and red was. The wrinkles seem to come on over night. And within a "breath's space". we are as our parents were, feeble, not able to do, go, visit, travel and see the world through those young eyes. Our sight is blurry, our steps softer, and maybe not so sure, and you may even find yourself fighting with illnesses and what they cause, things you never would have dreamed they would happen just a few short years ago. 

I know I've thought back just 7 years ago. Never would I have dreamed I would lose all of my teeth, and need complete dentures. I didn't know I would have all of these implanted joints, many more that are deteriorating quickly, and may need a new implanted one also. Life has just gone by within the vast light and the vast dark, I stood in the gray in between and never gave a thought that I could not wear that pleather mini skirt, or my pleather pants again. I thought I would be in those 6 inch platform heels for many years to come. Little did I know that none of those would be true. That now I try to find shoes that are "pretty", yet they have to be half way comfortable. I can no longer wear some of those mini skirts, and tight tops... and I would never have expected to have a huge bulge our of my right side, where I have an implanted pain pump.  I never would have thought I would awaken to stiffness, pain, and sometimes so fatigued I just can't really do all I want to in a day. I find myself wandering through my own home, through my lists and lists, and wondering how I will do the laundry, vacuum, cook, clean, wash the car, change the sheets, get myself showered, get the pups fed, watered and taken care of, help my Mom with her things, and still need more time to do more things. I have a very difficult time "giving up" anything. Even though, just like here on my blog, or in my new book, I am writing, I HAVE NO CHOICE, I HAVE TO FOR GO something in order to have the time, the stamina, the brain power, to do what I NEED to do and what I WANT to do... and something will have to be put aside. If I had my way, it would be like it was in the late 90's. I could go to college full time at night, write, work full time, take care of the kids, house, yard, bills, cleaning, cooking, sewing, going out on the weekends, studying, and I just never stopped. I had the energy of an atom I guess.... I was a never ending ball of go, go, go, and that included exercising EVERY DAY, walking, go to aerobics, you name it... now if I get the laundry done, have enough time and energy to shower, you can bet before I can finish ONE task, I am exhausted and ready for the sofa instead.... and IT SUCKS...   

TO BE CONTINUED


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   

Ennis Daily News Local Paper Arthritis Foundation and Myself - Article

After lots of jumping through hoops due to out local paper having new people coming in, I got the article about myself and the Arthritis Foundation in and published this past weekend. I didn't realize it was printed, because "Rhia's Law" if it will happen, it will happen to me... I didn't get my paper thrown that one day, out of ALL days, that one day I didn't get the paper as usual. That NEVER happens usually....


Anyway. I will thrilled to see it, and also thrilled to hear one friend of the family who told us about it this morning at the doctor's office, which is how I found out that it had been published!!!

I went straight to the paper and picked up a copy, and when I went into the market, I had several people stop me and say they had seen it in the paper over the weekend!!!!! Which made it even better!!!!!

I am kind of upset that they "shortened" it a bit, because it was longer. But, I think due to the fact he had left it out, and it had not been published when I first sent it to them, he made sure he got it in immediately.

Again, I owe so much to the Arthritis Foundation and especially to Laura Keivel, who has truly made me feel that I have found "my voice" in being an Ambassador for the Foundation. "The Lord Willing and the Creek Don't Rise" as the saying goes, I hope to be back in DC, for the Annual 2015 Summit on the Hill, in March again. If at all possible I plan to be there every year my body, my mind, my spirit, and everything involved allows me to...

Some of Life's Little Disappointments - Especially When It Involves People, Promises and Illness

I've been on what some might call a "tear", "Rampage", "soap box", "griping session", or just plain bitchaaaching and griping over the past couple of weeks.

As this age, one would think by now, I would totally understand PEOPLE will let you down, disappoint you, make you feel less than, not as good as, or like you are some 3rd "rate romance", in some "motel rendezvous" - Touche' as some would say. A title to a song by Sammy Kershaw if my memory or what's left of it serves me correctly. Well, someone may have actually recorded it before him, but I do remember liking his version, especially with his voice singing it.

I am NOT "literally" speaking of any "incident" involving some 3rd rate romance or any kind of motel rende-anything... but the "feeling" you must have when you feel like you have some how it "bottom" of the pile of humanity. Those that seem to be sitting on top of you, and not even caring they are smashing your
"innards" onto the floor just beneath you.

I will say, taking totally up for ME, I've in all honesty, sick, not sick, felt like crap or not, kind of like "sickness and in health" have worked my butt off the past two years and honestly more, as a voice, advocate, volunteer, activist and Ambassador for the things I hold near and dear to my "stance" about humanity. I am definitely and maybe even a bit defiantly cut from a "different mold" than some. I would think that from the time I was about 4 years old, I totally became different than many kids, and later on, than many adults I have known or heard of. I have kind of "beat and whistled" my own horn and drum so to speak. I rarely go for the "normal" of anything. I've never felt being "normal" was anything but basically boring. And who in this day and age of almost being able to do anything... the SKY literally is the limit... would want to spend their life normally boring??? I did for years, OR I tried to "think" I was going with the general flow of those around me. Well, hell, I can attest that now I realize where I went, what I did, who or whom I met, saw, spoke to, and how I decided many years ago to live my life... was for many NOT considered anything but normal.


Sometimes I have to wonder if that is the reason I am "chronically ill".. as silly as that sounds, let me explain further. For those of us that are fortunate enough to have very little issues with our health, then you truly cannot possibly put "your feet in someone's shoes" that are chronically ill and/or in chronic pain. If you have been one of the people that rarely missed a day of school, went on to college, and the same happened, then you went out into the working world, got a job, and you just never miss work because of illness, surgery, and so forth. I have to wonder if that is even the "norm" now days. Maybe it is because I am a fully fledged "chronic illness" survivalist, that knows rarely a day that everything physically feels ALL RIGHT! It is usually one, two, three or more things happening to me physically, that effects my emotional and mental health also. If you awake to pain every morning of your life... you know without a shadow of a doubt (unless some miracle happened in the night) that you WILL awaken with some kind of ache, pain, or something that kind of makes your start of the day, a bit slower than many. For those like myself, that have to run to your desk (well almost more like crawl) take all of the "early morning" medication that you HOPE will give you a reprieve from pain, illness, or whatever maybe happening on any given morning of the week or weekend... so that is in itself is your 1st priority. Then you dive into go and turn on the coffee pot, and probably take a look at the MANY things on your list or lists that you either NEED to, HAVE to... get done... or more like what you can possibly PUT OFF until the next day or later in the day once your joints, bones, hips, shoulders, neck, feet, ankles, thumbs and probably the rest of you are kind of "lubricated", jump started like a small car battery, & then after the brain fog lifts... you maybe able to begin your day.

ADDING THIS FROM TODAY SINCE IT KIND OF GOES ALONG WITH THE ABOVE... NOVEMBER 9TH 2014...

AND HERE I GO AGAIN... STILL ON MY "SOAP BOX"....


As if I were not busy and stressed enough I decided to take the Defensive Driving Test again... just for the 10 percent off my insurance but all and any discounts help for sure. I am doing it all online which is great. But, damned I don't remember it being as long as it is now. It has been a long time I guess since I took it last. So, they have probably added more to it due to cell phones and all of the new technology in cars that can help and also hinder with distractions.... so now I am in the middle of that, along with waiting for Geico to answer a question before I change policies, and then I had paperwork to come in for another thing I am in that has to be done every 7 months, I have three appts next week, the dentist, blood work and my heart doctor, plus my last Arthritis Foundation Ambassador meeting for my year of training is Tuesday afternoon, so I find out it if I've done everything to be an Ambassador, plus possibly did the extra things in order to be a "Platinum Ambassador". I found out the article that I've sent to our newspaper goes in (either it went in yesterday and wouldn't you know I did not get my paper) or it goes in tomorrow. I had an email from the new editor of the paper. I had sent it in about 3 weeks ago, and heard nothing. So, I resent the email, and still did not hear anything. I went down there early last week with a copy of the email and the article. The woman told me then they were having a change of staff, thus the delay. Well, I got a very nice email from the new "editor" who told me he was going to make it a "Highlighted" Article in the "Life Style Page" with my photo on it and everything! So, it is in the works also... but through all of this, then have have a "week" reprieve from APPTS!!! - only to have ONE EVERY DAY OF THANKSGIVING WEEK!! I HAE TO HAVE my pain pump refilled 2 days before Thanksgiving, Mom and I see the PCP the Monday of that week, and then I have to go back to Dallas to see my Rheumatologist the day BEFORE Thanksgiving... when ahe the heck am I supposed to have any time for a holiday... sometime next year I guess!!! It is insanity, and that week will be nuts anyway, due to many being off the entire week, kids out of school, parents possibly taking a few extra days off... I hate to think about Dallas Traffic... especially during the week of a major holiday... nuts, they already can't drive on normal days, much less during holiday time... I dread it... MY problem is also I am not feeling very well at all... I thought a few days ago I might be either coming down with something, or had a flare coming, ... and I just have not had the energy I really need to get over all of these doc visits, taking care of the house, grocery shopping... speaking of... I went Friday for my "stock up" we are OUT OF everything grocery trip... and I knew it would be a load. I took in about 7 or 8 reusable bags knowing I would probably fill them full. Well, I got about 3/4 of the way through my list, and I was hurting so badly in my lower back, my right hip and lower back, and side began to just hurt like hell. My feet were hurting like they do in the mornings when I first get up, and I was just almost not able to push the basket around. I had to LEAVE off part of my list, get in line, check out, get them to carry the bags to the car, and go directly home. I was a total wreck, by the time I drove home, got 7 bags of groceries that I could barely lift into the house, and then had to put it all up... myself... Jim helped by helping me empty the bags and sort stuff out, but he can't bend over, reach up, get on a chair etc... so of course I still had to get everything put away, and was grateful I saved 46.00!!!!!! in coupons... but it took me a couple of hours to print some, cut all of them out and organize them, then get them and me to the store, and get them out and double check them as I bought items to make sure everything was correct and check out....then of course as I said above get them home, put up etc.... I have and continue to discover between the time it takes me to get ready, shower, hair, makeup, then to get everything prepared lists, coupons and so forth, put myself in the car, get to the store, and walk through a huge store then get everything home... it takes all of my SPOONS for the Day and then some... and IT SUCKS!!!!! It sucks to feel ill, it sucks to feel old, it sucks to look old, and it just all sucks right now.... I cannot seem to get myself organized enough anymore to keep me from taking 5 times as long as I used to before the illnesses....

Nominated for Several WEGO Awards!!!! for 2014

I am so elated!!! I've gotten several nominations for the WEGO Annual Health Awards and just got my "Tweets" and Emails stating so, I am just blown away by those who believe in my hearts advocacy, volunteering, activist and Ambassador work!!!

Here is my profile information on WEGO:

https://awards.wegohealth.com/nominees/1998

Here are the nominations I have received so far:

Talk about feeling totally honored!!!!









Be there With Your "Jingle Bells On"!!!!!!

Be sure to Check out other locations around the nation for other cities that are having the "Jingle Bell Run".... this is Nationwide!!! I know San Antonio, Austin and I believe Houston will have one here in TX, and possibly more... but they are sponsored all around the Nation!!!!

Here is the link to find out where the closest is to you!!!

Medicare Advantage Plans, Medicare, Supplements, & Health Insurance

I realize many of us are probably on disability of some kind. Those of us that have been chronically ill, for way too many years, have finally had to "give up" some awesome jobs, to get only a "fraction" of the benefits and salaries we once had.

Yet, chronic illness, whether autoimmune, CFS, FM or many other diseases, syndromes and illnesses, brought many of us to the place of decision... to give up a job and go on disability.

Well, in some states and TX is ONE of them, if you are UNDER the age of 62 I believe it is, and you have Medicare, they would not allow you to just purchase a "Medicare" Supplement. You HAVE TO get a Medicare Advantage Plan. Of which, there are not be a very few of these types of plans. With the "hatching" of Obama's health care plans, most of which Congress, as I understand it, you WILL BE able to purchase a "Medicare Supplement" if you so choose. The point of that is though, they are MORE EXPENSIVE than getting into a Medicare Advantage Plan. Some of the Advantage Plans do not even charge ANY Premiums. But, there are some doctors who may not take them, or you may have to get some PA's (Pre-authorizations) by your physician on certain items, or possibly you may have a medication, that may require "step therapy", where you try certain meds first before you go to one the doctor recommends for you. Although all of that is going on, I do know several bills have already went through Congress to change those issues.

Well, I've had Humana - their Medicare Advantage Plan now for about 5 years and for the first several years I was quite satisfied. Them seemed to have been over the past 3 years getting slower and slower to process claims, making doctors wait to get paid, which of course is going over about like a lead balloon. So, like my own PCP, who had now decided as of Jan 2015 to STOP taking my Humana Plan! Well, this is the doctor WHO FIRST DIAGNOSED MY LUPUS! Plus he is the one who takes care of my Lupus, taking care of my flares, and medications. Even though we have been with him from almost Day 1 he was my physician, and I am trying to get him "Grandfather" me in due to the Lupus situation. Which I know can be done, especially due to the Lupus, because they did it with another physician for me on my pain doctor, who takes care of my pump.

But, when I started checking around, I've found out that I maybe doing a smart thing by changing over to the AARP "Sponsored" United Heathcare Medicare Advantage Plan. AFter researching it over about 3 hours yesterday,  I began to see more benefits ALL of my doctors take the Plan, all of my medications are in their database, and say that they take them... it does not cost the 49.00 a month, plus they give you some basic dental and eye coverage and for something like 30.00 or a little more you can get premium dental coverage.... anyway, if any of you have the plan, I would love to hear from you.

I shall post more tomorrow... I am worn out for some odd reason...

So, I think I may join my two pups and my husband on the sofa to watch the rest of the ballgame that is on

(A bit more from Facebook)

Well, if any of your have a Medicare Advantage Plan, and want to share how you feel, please I would love to know. I right now have Humana Gold Choice, and I have found out that MORE of my doctors and my medications will be covered under "United Healthcare Medicare Advantage Plan" for 2015. I spent a couple of hours yesterday checking all of my doctors and my medications through the site, and doctors that are going to "DROP" the Humana MAP in 2015 ARE going to continue with United Healthcare HMO Medicare Advantage Plan... I used to be extremely concerned about "HMO's" when they first appeared on the Horizon. They have a very bad rap to the entire insurance industry as far as health wise. But, now with the Medicare Advantage Plans more doctors in my area and my own personal doctors are covered... where they as I said as dropping Humana. Even the specialist that did my neck and reverse shoulder replacement take the United Healthcare plan, and he had dropped Humana over a year ago, and if I needed to see him I would have had to pay something like 30% or maybe even 40% of the visit charges!!!! So, if any of you have an opinion... likes, dislikes and so forth PLEASE either share here, or message me if you wish, or even email me at redstangblonde@yahoo.com or rhia@ravishingrhia.com.... I am thinking about changing both myself and my Mom over to this other one. AND to BOOT Nationwide UPPED my insurance and I just got through getting a new quote, which is over 500.00!!!!! a YEAR cheaper that who I have now... I am so pissed.. they PROMISED ME when I had to get the new car, my monthly premium would only be about 15-20 a month higher... BULL they almost DOUBLED their premium!!! I also found out that since Jim is NOT able to drive at all, and may not be able to for a long, long time if ever. So I DO NOT have to keep him on my policy for now, until he can drive again. Talk about a bunch of money hungry greedy asses... pardon my French! You have to watch your back, front and sides, because they will "stab" you any way they can.... corporate GREED!!!!