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!!!

http://www.arthritis.org/get-involved/jingle-bell-run-walk/

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!!!!

A Bit "Bass Ackwards" - Going to be a post from about a week ago... Topics for Blogging in November - Feel Welcome to Join in...

I had mentioned in a post about a week ago that last year in November one of our Health sites had put on a "30 days in November - 30 different posts each day event". I had actually thought it was for this coming November, then found out it was actually last year they did it rather than this year of which they done in 2013. So, I decided it would be a good way for me to find some "subjects" to post on that maybe a bit different, as well as getting all of you to jump in and join me. I said I would post some "subjects" for the days of the week, to get us started, and then please if you have any subject that has something to do with illness, medications, doctors, diseases, anything medical feel free to tell us your opinions.

So, I am going to kind of post the subjects that were from the last years November posts, so I can get us started with a few ideas.

Here We Go:

November 1st - IF you use "smart phones" or an I-Pad, I-Pod etc and are into "Apps" what is your favorite medical app? Do you keep up with your exercising, or calories, or do you use some type of to keep up with any type of health problem you have? If so give us the name of them, along with the reasons why you like those particular apps. If you don't use an application, then name a online site or sites you may use to keep up with information on health.

November 2nd - How about a "List" of things you "Know" you can do...

and others you "think you may do in the future"...

i.e. (I KNOW "I can tell my own personal health story to others")

vs. (I "think" I can cook, clean, go to the market, and wash the car all in the same day") - kind of a "realistic" look at what you CAN do in your daily life, vs. your sometimes a bit "unrealistic" view of what you WISHED you could do or still do in your daily life"

November 3rd - Do you have a "Mascot"? In other words, my "Mascot" is a hummingbird. Why a hummingbird? Because they can go any and everywhere fast as they can fly, they are able to bring beauty to our scenery. They don't harm a thing, and the bring joy all around when they appear around me feed out of the feeders I have up for them. So, do you have a "mascot" or something that represents beauty, strength, tenacity, wellness, and wholeness. Or possibly is there someone or some thing you might like to be, or something you maybe able to do, such as float like a butterfly, or someone you might like to be...

November 4th - How do you Feel about "alternative medicines" and do you use them?


November 5th - What are 5 things you can do that you thought once you were chronically ill you would not be able to do once you were diagnosed with a chronic illness/illnesses?


November 6th - Name 4 things that you are NOT ABLE to do anymore since you have became ill, that you truly miss being able to.


November 7th - Do YOU take YOUR MEDS as you should daily? Or do you take them on a "hit or miss" situation?


November 8th - Do you feel your medications are working to help you? If so how do they make a difference? If you feel they are not making you better, have you spoken with your doctor to try and change things around or do something different?


November 9th - How do you handle those that don't "get" what "invisible illness" means when you run into them? I am sure that most everyone of us have ran into those who "don't" truly understand or may not even "believe" we are chronically ill. Do you have your own  condensed "story" that you tell them, or do you just ignore them, put it off as "ignorance" and leave? Or do you some days feel like just "going off" on them and reading them the "riot act" when it comes to their own "stupidity" about chronic pain, chronic illness and how they treat you? I feel I've been through ALL. There are "days" I totally have the patience to "explain" a bit, and then there are times, I just want to YELL at them?

November 10th - Throughout your road of illnesses, diagnosis, medications, doctors, pharmacists, what was the most impressive turning point or inspirational moments in those times...how long have you been chronically ill?


So, those are a few to get you and I started. If you have ideas you might like to see discussed feel free to put them here under comments so we can see them. I will "answer" more of these myself also.....

Information from the IFAA's Study On Autoimmune Arthritic Illnesses and What Some of the Results Are

As new data comes out of the study that IFAA helped to get initiated and to get relevant information out to everyone that really is vital to our lives and how these illnesses have and will effect us, I wanted to post this from the IFAA


Through 2014, IFAA led an Early Symptoms of Autoimmune Arthritis study to determine all symptoms that could occur amongst six diseases within the first 24 months after initial onset. From these symptoms we are narrowing it down to 0 < 12 months per disease and 0 < 6 months per disease. While we are currently analyzing everything from joint and chest pain to eyes and canker sores, we are finding out some very interesting things that will help us create new Early Symptom Disease Models for the diseases individually and the group (so that undifferentiated patients have a better chance of diagnosis with treatment in the future).

So how many of YOU had 'brain fog' in the first 24 months? Here's how many had it in the first SIX MONTHS. It's not so abnormal, is it?

How "Serious" Do you Take Your Autoimmune Diseases and Diagnosis?

I had thought about this question last night, for some unknown reason. I knew last night I needed to sit down and write about this ASAP, before the brain fog kicked in and I forgot what I wanted to say or even write about.

Yesterday, was one of those days that I had or needed to play catch-up. I needed to pick a few things up from the market, needed to make a trip over my Mom's, and as the 2 days previously, since I had gotten little to nothing done, I felt I needed to get some stuff done. Last Wednesday I had felt "fine", or well enough to dress, put my makeup on, dressed a bit more decent, and get errands completely. All of what I needed to do, meant running and trying to get everything caught up. So, off to the bank, to the cemetery, to put gas in the car (it is 2.67 here!!!!!!!  YEAH!!).. air up the tires on the car, take some magazines to the library, run into get some prescriptions of mine picked up, then to Wally World, for a few items I can't get anywhere else. I did get it all done, Then I had to come home, put all of that stuff up, get Jim, and take him to drop off some paperwork to a potential pain physician and he also needed to sign a document in front a Notary. So, we also made a 2nd trip to the bank to get that done. From there Jim needed his flu vaccine, so we headed for CVS. Well. that turned into all for naught because in the 1st place his insurance WILL NOT even pay for the flu shot, which has gone up now from about 23.00 a few years back to well over 32.00 this year!!! Yes, I know, I know - everything has gone up but damned... also there are several strains in this vaccine than used to be, but I don't buy all of that, because the pharmacies and pharmaceutical companies are RICH!   Honestly, my belief is that ALL people should be able to get the flu shot at NO COST, if they make below a certain amount of money... NOT allowing those that want the vaccine to get it, just causes more people out there that have the capacity to get sick, and run up a much higher bill that a darned flu vaccine. So, I am not sure I get that 32.00 ordeal. I just saw on the news last night how MUCH MONEY OUR COUNTRY LOSES during flu season, for those especially that DO NOT get the flu shot... and you can believe many of them WOULD had they been able to pay $5.00 for it, or whatever they feel than afford.   

All right, back on the subject that I began this entire blog post about. I have had a couple of "epiphanies" about my own chronic illnesses and chronic pain issues over the past about almost 8 months or so. I always "felt" as if I had accepted the fact that I DID have RA, Lupus, Sjögren's, and so on... along with several what I would call "sub illnesses" that have followed right along with the natural progression of these autoimmune diseases.

As I have come to figure out lately though, I really HAD NOT met these illnesses actually face to face, nor had I truly down deeply that I had not accepted that I am chronically ill, with diseases that at this time have no cures, and even though we have some medications that certainly due help to slow down the progression of some of them. I think the very first time I truly felt I was "ill" was the day my very first tooth just fell out of my mouth coming loose at the tooth/gum line for no good or practical reason. Of course I've tried to be prepared for the day I would begin to have dental issues due to the Sjogren's BUT... never was I prepared for it to happen this soon, nor that fast. From the moment the first tooth fell out, within three weeks 2 more had basically done the same. I was at the dentist more in a month than I had been all my life!!! By the time 6 months rolled around I was missing at least 7 teeth, and I believe at that time in my life, struggling with the teeth, the thought of dentures that I SWORE I WOULD NEVER have... was almost more than I could handle. Little did I know it COULD AND WOULD get worse before things would get "better"... Christmas 2013 was not the most memorable... money was very tight, I seemed to have been ill with one flare after the other, bronchitis and it did not want to go away, and even New Years came and my Birthday fell in February, and the upcoming Arthritis Foundation Summit was coming so soon in March. Yet, I had not been able to get my biologic infusion of the Rituxan (that is AFTER WE FOUGHT to get it paid for, because my insurance refused to pay all of it, thus the infusion clinic had gotten the infusions approved through their private charity program. ) But, I had had way too many issues with infections, bronchitis, & a large dose of step prednidone due to the flares, I was just down and out until the very last right--I at the last moment made a trip to our urgent care center to get some last minute treatment for a Lupus flare that had just had me down and I couldn't go (this was Friday evening and my plane was due to take off MONDAY at 6:00AM). so this was the last straw in the box per se'.

Well, someone much more MIGHTY than myself handling things. By Sunday, I was able to pack, still not feeling like jumping over the moon, but compared to the week before. So come VERY very early Monday morning. Even up until I was getting my luggage out of the car, and checking my bags it has not hit me, that I was headed for Washington DC. Once I was on the plane, settled in and on my way, it hit me, I truly WAS HEADED FOR THE SUMMIT IN D.C.!!!

After the accident on March 26th, 2014 - everything went to hell in a hand basket. I believe the night I first came home from him having that massive back surgery, it hit me square in the face, that I had CHRONIC AUTOIMMUNE ILLNESSES, and I had better get hold of myself, or I would lose it completely.

 So, for the very first time rather than this frivolous thought of "yes, I have autoimmune illnesses" that I take medications for daily. MTX, Plaquenil, and usually a biologic, now we have added Orencia in, it will be here Tuesday and Sulfasalazine. It hit me so hard, that I literally had to sit down on my chair in front of my computer. Here I was, even being a voice, an advocate, blogging about them, Facebook page and posts about them, seeing how many others suffer with these illnesses, yet, I had never really settled into the mere facts of DAMMIT the hell, I have Lupus, RA, and autoimmune illnesses... which mean forever unless someone happens to invent a cure in the next few years. My mind was spinning, my head full of thoughts... how would I survive, how will I ever be able to help Jim, how can I keep on writing my book, my blog, doing my advocacy, my activist, my Ambassador work. Will I still be able to help Mom??? Question after question rattled through my brain... and with each question, the "other side" of my thought process had an answer... and that was YES! The "answer" was much simpler than the questions were. Inside, somewhere, somehow, I knew I would be able to "handle it all"... that may mean a change in all kinds of things, and especially letting go of what "normal" used to be and begin to accept what "normal" will be as the next days, weeks, and months go by. I was more in fear of the "change in normality I believe" than I was the illnesses, or Jim's physical situation after the wreck or any of that. Change is something that is frightening to most of man and woman kind... WE are truly creatures of habit. I realize very often we don't seem to be when we are younger. But, for the most part as we age, we don't do as well with change, uprooting your roots you have put down for so long, chopping them down, and learning a new "normal" is almost impossible for some people.

I could no longer sit there trying to figure it all out in my head at the moment, because so much "unknown" lie ahead... how long will Jim be in the hospital?, and all of his physical, mental and emotional changes, it will take time. So, I "picked myself up", and I got busy with notes of what needed to be done, when, where, how and so forth. I also had a couple of things I HAD TO DO FOR ME! #1 was at the time I needed to get my Rituxan injection. I was well for a change, even though worn to nothing due to all of the drama surrounding the car accident and Jim, but I did one day go and spend about 7 hours getting the first infusion. In two weeks, I was to go back and for the 2nd round. Then I should be good to go for about 5 months.

Little did I know, before two weeks rolled around, about 5 days after the 1st infusion, I began to have the strangest things going on. I "heard" voices, I was almost to the place of hallucinating, I was not sure if I was in my own "home" or not... I could not write, barely type legibly. I was talking to the voices, all around the house and walking the floor. I paced up and down the living room through the office and into the kitchen at least 50 times maybe more. But, I could not put a finger on what was wrong. I felt "sick" in some ways, but again, I was not quite sure how. I was not really coughing, but in ways I felt a bit feverish. Finally, for some strange reason, due to the fact no matter how ill I AM I don't run fever, but I decided to check it anyway. To my surprise I was running almost 103 degree fever!!! Well, that explained the strange voices, and the oddness I was feeling but where all of it was coming from I was not sure. This was a Sunday afternoon, and that meant no doctor would be able to be contacted. I certainly did NOT want to go to the ER, too much hassle, but I did know that we have an Urgent Care Clinic here now, but whether they were open on Sundays was a stretch.

Another thing, I honestly knew I should not be driving alone. I feared having a seizure. Even though I was taking aspirin, the fever was staying fairly high. And they strange things I heard, saw and felt would and could mean I very well with fever that high have one. Thus, the alternative was to call my Mom, Which I really did NOT want to do, but there was really no other way, unless I call 911, which was ridiculous, unless I did either get the fever higher and I felt I needed medical attention extremely. Well, as the story goes on, my Mom takes me, they are open thank goodness, and I have double pneumonia... of which the physician that saw me happens to also be an ER physician at the hospital. Which was good and bad. Because I was so ill, and had all of these autoimmune issues, he felt I needed to be seen by them, and evaluated to make sure I didn't need IV antibiotics... I begged him to try anything else first, but don't send me there. After I told him about Jim, and all that was going on with everything, he reluctantly allowed me to go home with high powered antibiotics, complete sofa rest, for at least 7 days, hydrate, watch mt temp several times a day. AND if I FELT ANY WORSE or could NOT get the fever down, I was to go immediately to the ER! So, I promised I would have my meds filled, go home, and not move off the sofa for at least a week. Basically that is what I did, other than having to take out trash and changing the dogs food, water and paper... I stayed at home, watched movies, took my medication and drank loads of green tea, juice, and ate very light stuff... and it took me almost a MONTH to truly get over it all. I never developed a cough but some people don't with pneumonia. I am sure between being so ill, then going to DC on a load of prednisone, then suddenly the accident happened and I am rushed on a plane before I think I really realized it. I had been in the very cold, snowy, but not dry snow, very wet snow in DC all day long, for 2 days walking in it for hours... and to put icing on the cake all of that happened... then I took the Rituxan, so that make the cherry on the top.

That also slammed me in the gut, with a punch... if I had not had the autoimmune Illnesses I "may" not have gotten that ill. But, it could be that no matter AI or not, I still could have contracted the pneumonia. That was in early April and went on for weeks honestly, As I said above, I was not sure I would ever get over the fatigue, tiredness, dizziness, the feeling like hammered crud every morning... I ached and I was sore... and stiff... but I did ... slowly I recovered and by the Grace of God, I did without going to the hospital which was an excellent thing and a miracle.

So, twice within a month, I had been really slapped hard in the face that I had chronic illnesses, that would NEVER go away.
                                                                       
Lately, the "dreaded" head of the Wolf popped it's head up when I got to thinking about how much medication it takes to keep me well. Then I go to get the flu and pneumonia vaccines, and become suddenly "ill" for no real reason. I cannot really say that is was either one of the vaccines. I've had the flu vaccine now for years, and I had taken a pneumonia injection 5 years ago and I don't having that could possibly cause me to feel as if I did have pneumonia and the flu at the same time. But, that is how these illnesses go. What may happen to you one time, may never happen again. Or something that has never reared it head, suddenly shows up out of the clear blue ocean, leaving you to wonder why the hell it came from.

I've learned as difficult as it is each day of my life, to try and not stress over the "little" things... and try to make best of the good things... also... when these AI illnesses decide to act up, flare, be in commission, or however you want to say they are "active"... to allow my body to "tell me" what it needs. Whether that is rest, or not, whether it is a certain thing to eat, or whatever needs my body, mind and spirit needs at that time, to try and slow down, and allow it to work itself out. Sometimes it may mean just a day of rest and movies. Another time it might mean a full blown flare and a trip to my doctor for a shot and prednisone. Others may put me on the sofa for days, until it is going away. It is never easy to "slow down". Each of us know that life seems to be moving more quickly than we can keep up with when we have a chronic illness, or deal with chronic pain.

The very last moment I had lately of "Hey, stupid, you DO have an autoimmune (bunch) of illnesses, that are REAL, and nothing it "in your mind" and if it is then it needs to be there so I will "listen" to my own body. I was just going through my home room to room, looking at what we need to "finish" the whole house inside and out needed to be completed. We ran out of time and money when remodeling at purchase time, thus we still have thing that really need to be completed. So, I was throwing thing out, knowing some things are just not anything we will use anymore. My "Motto" is if we have not talked about, looked at, worn, used... something in the past 9 months, then out it goes ... and as I gazed around at ALL we need to achieve it truly once again knocked me almost to my knees... I am ILL with diseases that have taken away my ability to "run like the wind" as I did a few years ago.

When did you first have a "reality check" about your autoimmune illnesses or chronic illness/pain issues? Was it as the very first part of a diagnosis, or did it really hit you hard later on, months or even really years later, that they or it is for REAL!!! You weren't living in some kind of night mare...????

Rhia