More News You can use - an article about what a patient with Lupus wished other people without it Understood and more...

I began this "daily paper" and it is based on the information that I would like to share with others. Health, Technology, sometimes specific information about cancer,Lupus, RA and other illnesses... but usually a couple of times a day I refresh it so the latest news comes up when someone reads it! I've not said much about it yet, since I was trying to get a feel for if it would be something worth my time... and now after several weeks, I do feel it brings forth some very interesting information that is specific and pertinent to what I want to share with my family friends, and readers, and of course now my blog people! So, there has been an add for it on the right side of my blog for awhile, and I decided to post a blog post about it now, so others can see what it is like, and see if some of the information is helpful to you! The link to the latest addition is above! Please tweet, or share it if you feel you would like to pass it on, and if you want please comment so I know how you all feel about the articles.... more to come soon Rhia

IF my typing is "off" I broke a pinkie nail off below the quick yesterday evening closing my back fence! So, I am trying to catch any thing I misspell :)   )

https://paper.li/ravishingrhia/1438808814#!headlines

What "Out of the Mouths of Babes" Taught Me this Morning about Lupus and Advocacy!!!!

I have to post this in regard to ALL of us EFFECTED by LUPUS!!! My daughter called a little while ago, as most know she lives about 8 hours away around the Corpus Christ area, and she was talking about Selena Gomez having Lupus. I told her I had just began to read that, and she said that the woman she works with, has a son who is 24 years old, and he was diagnosed with Lupus... recently he almost died due to it almost shutting down his kidneys.. and then "out of the mouths of babes comes" This is not a "rare" disease, it effects so many and there needs to be much more awareness about it!!!! As I almost fainted because of course here I am her Mother who has it among other A illnesses, and of course I am a huge Advocate for Lupus and RA...Sjogren's and so forth. So, the "point" here it dawned on me, that first of all of course she knows that I have Lupus, but her thoughts have been it is a "rare" disease, and she knows that I help to spread awareness and then it dawned on me - 



UNTIL WE make LUPUS a COMMON HOUSEHOLD TERM like CANCER - never will all of our advocacy be enough.. even those out there educated about it, with a family member with it, like a Mother, and all she knows about me, it still to her seems to be a "rare" issue - then when she said, but Mom is is NOT - the news always makes it sound like some "rare" disease but it is far from being rare... it touches MANY people's lives daily and then she said and they give "chemotherapy" medications for it - that Selena Gomez is on a much smaller dose, but it is a "cancer" drug that is used"- now my kids know that I am on medication and neither of them live close enough to "see me" when I am ill, or see what the doctors say, and so on 0 but of all of the advocacy work I do- I "missed the boat" in telling my own daughter that I am TOO on chemotherapy type medication just also in a much smaller dose.... I felt as if in my own way, to those closest to me, I have FAILED miserably in my "activism" and voice for these diseases..... again that is when it dawned on me until we QUIT having people think of these diseases as "rare" and they become as "well-known" as cancer, heart disease, diabetes etc.... then we shall never HAVE ENOUGH AWARENESS out there.... I told her that kids as young as 9 MONTHS old can be diagnosed with JRA.... and I did not have time to explain more about how that is found, but it surely hit me square in the face, that our activism, advocacy, and awareness need to be MUCH, MUCH more...Lupus as I said, needs to be a "household" word......


So, I now am even MORE AWARE that we need MORE AWARENESS! All too often these types of illnesses are considered "rare" yet as we know now, daily, we hear of many, many more cases, and people that have it Lupus, RA, Sjogren's and such for YEARS and they do not get diagnosed until after they are much more ill that they should have to be!


This to me is just NOT ACCEPTABLE and it should NOT BE acceptable to any of us.... whether you have Lupus and so forth, or a family member with it or a friend, and so on, awareness is they key to finding a cure, a reason for, how to STOP LUPUS before it attacks someone so young, that their kidneys fail..... Her comments to me certainly gave me chills down my back, to think I was diagnosed about 2009 or so with Lupus, RA, etc... and even though I have made it very well aware to both my kids and my Mom and other relatives, friends and such... and even put my heart and soul into all of the Advocacy I can, it is NOT ENOUGH1 STANDING on those White House Steps in 2014, and telling CONGRESS having these disease is NOT ACCEPTABLE and yet each day we grow it seems almost further from education people about this not being some very rare something, but it is a part of MANY and THEIR EVERYDAY LIFE!!!!!


I have to keep DIGGING away and trying to do all I can to spread information about Autoimmune illnesses and just how deadly they can be.....

WE must ALL do so!

 

Awesome News From the AF and on Capitol Hil in Californial - about "steo-Therapy" - A "step" in the right direction for California!

http://blog.arthritis.org/advocacy/ab-374-step-therapy-arthritis/

Chipping away at the issues that keep us from our medications due to "step therapy", Pricing and much more!!! This is certainly a Victory!

Tips on How to Share your "diagnosis with family, friends, the public and so forth - These tips may help in any type of chronic illness or pain issue, not just autoimmune

www.rheumatology.org/I-Am-A/Patient-Caregiver/Diseases-Conditions/Living-Well-with-Rheumatic-Disease/Sharing-Your-Diagnosis-with-Others

The above link comes from the Rheumatology site and it gives you assistance on whom, how to, what to, say or maybe not say about any illnesses such as RA, Lupus and other autoimmune issues, but many of these same tips, when you have an "invisible illness" especially could help you also.


I know for many, they feel an isolation, a coldness from others, when they explain being "chronically" ill. Some want to try and put it off to you just being "lazy", or to use as an excuse to do or not do something. Others thing you are just faking it, or that it is a way to gain attention... all of which is total bull, but I can attest that even DOCTORS can give you that feeling. In fact just last week, after being ill for months with other issues, and feeling as if I had a Lupus Flare coming on, that ONE DAY after an entire year of not getting to see him, but deal with his PA, and guess what? That is the one damned day, I feel "better"... and I had emailed me on several occasions about how lousy I felt and what all was going on, and yet then he walks in expecting me to look horrible and I look fairly well..... I knew he wondered if a part of me, was just complaining to complain. So, then I spent two entire days, plus even the weekend feeling lousy, a headache, a stiff neck, the mylar rash my throat feeling swollen and raw..and today Mom and I went into see our PCP.. well I did not look all that well this morning, BUT I also once again did not look as "sickly" as I had felt and been over those past 4 days... I did tell him that my Rheumy gave me the flu shot.... and i told him usually I kind of feel lousy or maybe achy a bit, but never have I ran a fever, high enough that again I was almost hallucinating... every joint hurt, my head and neck hurt so badly... and so I thought he would give me a corticosteroid injection to slow down or help this Lupus flare go away... well he said the "new" flu shot this year contains FOUR rather than 3 strains of flu and thus my body may have reacted quite differently due to being autoimmune & if he gave me the injection and the prednisone, then my flu vaccine would basically be "useless" because my body would fight it off if I took that now...

So, I have to wait at least another week, and if I still feel as if I may have a flare THEN I can go in for the injection and medication.... so now I have to I guess just tough it out, which all too often is easier said than done.....

Life drama, illness, chronic illnesses and the Journey to where it leads us. -

Yes! I've done training with IFAA when it was still in it's"baby steps' 　 and it is incredible to see how much has happened over a short period of time. and yes, Tiffany Westrich-Robertson Ifaa and some of the rest of you knew about me going to Washington DC in 2014 with the Arthritis Foundation! That is one of the most single events I've been in, that made me feel, see, and total know I DID and do make a difference... I actually made Platinum Ambassador, I guess for 2014/15, and still do lots of things for the AF, but also for WEGO Health, and IFAA of course, plus like the blogging for RA week, then the week long bloggers for Invisible Illnesses too.... my blog is FULL of those true "people" that are out here each to day truly MAKE A DIFFERENCE!, plus they help us "learn" that we do help with letters, emails, visits, and keeping in touch with our State and Federal Congress People... it is not go unnoticed as I figured out.... my heart and soul were truly set on doing MORE this year, with my advocacy, activism, Ambassador and so on "roles"... but I also feel I have to keep my blog very current, and if I post daily, or sometimes even more that helps to get the message out to others also... due to circumstances far beyond "my control" with the horrid accident for my other half in 2014, that turned out to be a huge game changer for everyone... then I became ill on several occasions... and was off my RA med - the Orencia, due to the fear of those injections may contributed to the cellulitis and also then the abscess. And I still am dealing with a lump in my other thigh,and the one that had the incision in it to drain is still not well and still drains some... but it is better than before - some of you probably know that I am in the process of getting divorced and in fact I have already "filed the petition" and some other paperwork, and am supposed to hear today about the court date... and of course the "mediation" that the "judge" ordered about the accident did not go well as of yet, that may still change if the trucking company owner decides to NOT go through COURT with a jury and so on.. he is back in the Seattle area,,, then of course I lost my Tazzy - my Pug who was about 13 years old, very suddenly, and she was my life.. her and her "Bub's" as I call my Chiweenie,,, so things have been NOT what I planned for sure, and my prayers are that come January 2016 ALL of that changes and may it be filled with MANY awesome things for ALL of us.... ;)

i am "suffering" from a "thing" I guess you might call it and Ive really never quite dealt with these feelings before. So, I am not even sure exactly how to explain it to all of you, but by chance if I do tell what I am feeling, some of you may have been through the very same or similar situation. I of course have been really what you could call "strung" out emotionally from all that has taken place in my life this past at least 6 months now. Plus I decided it was time for me to get back into a church that I thought I would like, and feel "comfortable" at. In between everything, of course most of you know that Jim and I are legally separated and I have filed the petition for divorce. In fact, I turned in some documents on Tuesday that gave me a court date, which is right after January 1stt... so I guess you could say, once again, I "start over" in life... things have changed and will continue to change, and I am also aware between my birthdays seemingly coming closer together, and that my chronic illnesses, although not horribly bad (especially as soon as I am to see my Rheumy that I had waited 6 MONTHS to get into, never fails.. I have felt like I've been ran over twice for months now, and the ONE day I feel "better" happens to be the day I see him, and it made me furious at my body! Then I look like an idiot, since I had told him for months now about all of the crap going on with the AI illnesses, infections, cellulitis, then an abscess... and I know he probably thought I was a "lunatic"... but sure as HELL, the very next day.... I saw him last Wednesday... on Thursday I felt worse than ever... they gave me a fly vaccine while I was there, but I had even told the nurse I have really never felt "lousy" after the vaccine... maybe a bit achy, but other than that I am usually fine... oh heck no I woke up Thursday and felt like someone took a sledge hammer to my head, neck, body, and everywhere... I had the chills, ran fever, and hurt like I was never going to get over the severity of the pain, my my back, my legs, my arms, and I was so fatigued I spent Thursday and Friday for the most part of the sofa. I was just feeling horrible, as either I had a very bad "flare with the Lupus" OR I had the flu!!!!

In fact all weekend, I've not felt well, and I can't think, I just do one thing, and lay it down, then later go back and see I never finished it... or I've tried to repair a lamp that Mom had now for TWO days, and I bought the entire kit, and it should work no problem, but for some reason, I cannot think enough to even do that.... now I fixed my lawn mower even changed the oil, and guess what fell over dammit and spilled oil all of over back patio tiles... I've tried everything and can't get it out, cat little Epsom salts, even Dawn dish soap, so today I put some bleach on a couple of the small spots to see if it did any good or just made it worse...Okay, enough of all of that, (the "writer in me") and my long drawn out posts.... I have dealt with of course everything else in the world - paperwork, trying to keep up things as far as my own stuff, and also Mom's stuff. It seems one of us always has paperwork, or doctors visits, or labs, or so on and so forth these past several months. In fact I am still extremely concerned about this "lump" on my right thigh. It never got larger but it did not go away either, and just like the one that finally abscessed it has this "grayish" tint over it - yt skin in itself, looks kind of like it is a grayish color.. and it could be anything, just as the surgeon said, it could be a harmless "lipoma" and he can take that out anytime I want. He just did not want to do two incisions on me at one time... due to all of those others issues with health I have, and I intend on discussing it with my PCP - Mom and I both have follow up appts with him in the morning.... along with several other things, for myself and for Mom... she told me yesterday and I don't know how long it has been going on, but she is short of breath again, even walking out to the mailbox and back.... so THAT in itself scares the HELL out of me... when that first happened it is because of a "leaky" valve and if the medication regime that the cardiologist has her own, quits working, that means open heart surgery - so then I got to understanding why, she is not really jumping up and down to go to the Casino... we have free rooms - like both of us for two days and then 2 buffets a piece.... so other than the small amount and I mean small that we gamble on... my car gets like 52 miles to the gallon, so you can go on not much gas at all there and back......

Anyway, back to the issue I am having... Last weekend for some "odd" reason, and I still have not figured out why, Sunday morning (I mean two weeks ago not this past Sunday).... I had the very ominous feeling, that came over me, even while I was getting dressed, and it was like I "felt" I was told "do NOT go" I thought it was silly, but the more I got dressed, the more this just strange feeling, overcame me, and I even cried about it, I was so alarmed as to "what or why" I felt that way??? It just shook me to the bone, as to what would have happened to give me such an awful feeling, especially going to church of all places... and I even tried to blow if off and go anyway, but I could not shake the feeling and I finally just changed my clothes and stayed home...I've had 'strange" feelings come over me through my life, that may alarm me into thinking may I should or should NOT do something, go somewhere, and so on, but nothing like this. I have enjoyed the new church and even became a new member 3 weeks ago on a Sunday.. So, for me to have such a weird thought such as that made me wonder if all of the stress is really causing me to "feel a certain" way, and yet there should be no reason.... Of course losing my Pug, Tazz, I am still very much not over losing her.... my grief is far from over, and what concerns me even more, is that Bub's is just not himself either. Usually he wants to eat breakfast with me, and will sit at my feet for me to give him a piece of mini-wheat or anything I eat he is usually up and wanting a bite... The distress, stress, or whatever you want to call it about this entire lawsuit ordeal has not helped what so ever, and now, there is really even more stress because if "they

don't try to offer to settle, that means court in Dallas for a week or MoRE - with a jury and the entire mess... of which I am certainly not in shape for mentally, physically, emotionally, or even money wise... that would mean be having to either travel back and forth every day for at least a week, and/or me stay up there close in a hotel... which I have to have someone to watch over Bub's... I am already concerned and worried enough about him, I really hesistate to leave him for any length of time since Tazzers passed away... he just shows signs of "grief to me, and frankly I am quite worried about him - he just has that look in his eyes, when I leave even for a short time, and when I come back he greets me even more than before, jumping, kissing, wanting to "talk" to me.... like he feared I would also go away and ever come back....

There is a GREAT GREAT DEAL of WORK and repair my house needs, from outside painting and some windows either need to be recaulked or a couple that really need to be replaced, which I can put the pins in and use the glaze on them, but still I have to have someone to help hold the glass up until I can get a few pins around it... I need about 5 or 6 of the boards from the bottom of my house going up, completely removed and I need some stuff that almost looks aluminum, but it stops any type of rotting due to being wood on the ground, and would not have to worry about cats or anything else digging to get under it... just about the time I think I have all of their holes covered, they find a new way in, and we have 2 cats that got either poisoned or sick, so they run under a home like ours and hide, but then they die under there,. and talk about something that "reeks" - anything like that gets under a house and either is sick or can't get out.... the smell is more horrid than I can imagine or explain... and we had it happen twice when we first moved in... so most of the places are repaired in one way to the other, but it looks horrible, and then I need to put new fence up where my neighbor took down a couple of old buildings and now there is nothing there so it leaves my backyard more open and I hate that... I have several trees, that are either in need of getting rid of because they are dead, or pruning enough so they will not grow into the fence like happens around here.... so I've been trying o hard to GET what I can get done - around the house... But, I am so SLOW now, or I tire out, or I have to run to do something else... I feel as if I am on a merry-go-round with NO PLACE to finally get off and stop the ride... I am not feeling "alone", but I do feel lonely with Tazz gone... I love Bubs to death, and he is my "rock" right now, but I know he misses having a playmate and I think that is also what is wrong with him.... he was used to them keeping one another company, even if they were just on the sofa, they were still there together..

So, I have been trying to decide if I want to get another puppy now, or if it is too soon, or if Bub's would be jealous or happy.... just lots to take into consideration... it has to be a very "small dog" for me now... because even Tazzy, and Bub's I can and could barely pick them up.... so I was thinking something on the line of a "Shi Tzu", or a "Shorkie", which I saw, guess a cross between a Shi-Tzu and a Yorkie... I really prefer I get it from the puppy stage and me train it myself... I've learned lots of lessons after these two, so I know what I will and will NOT do again...

But, they are also expensive and I do not care about "papers" or being "registered" - as long as it is the "type" of dog I am told it is from day one,.. and I really prefer not to get a puppy from what they call a "puppy mill"... I am not thrilled at all with those types of places, but I do want it to be already through with its first round of shots, worming vaccinations and have a clean bill of health when I get it.... SO and this includes my favorite "Vet" Venetia Shafer - send me some information on what breed I may like, something that will remain small, is from proper breeding but not a puppy mill, and any "ins and outs" of possibly one breed over the other... and why.... plus give me a very HONEST answer about whether you think I am doing this much too quickly, and just trying to get my broken heart to heal... I kind of feel as if I am "betraying" Tazz - by bringing a new pup in so quickly, and I also want your opinion about whether you think Bub's will be "jealous" or would he like a puppy because he loves to play... and Tazz was already getting up in age and did not play as much after he got about a years or 2 old...... In fact send me a Private Message or you can email me also and let me know your thoughts... PLUS what do YOU think is going on with me about this "odd" thing I have about going to church - because it happened again yesterday... of course I had not felt well for two days, but I even took a shower early enough Sunday morning and had plenty of time to finish dressing and go.... but once again it was as if "someone" or "something" was either "telling" me, or more just giving me this horrid feeling that "don't go"... I even tried to laugh it off at Mom's later yesterday, and told her maybe the "devil" is speaking to me, now since I joined the church...... I was "joking" around as I said it, but then wondered "why" this feeling is so apparent and very strong... also I am facing getting new Medicare Advantage Plan insurance for either just myself or again for her - and this time I HAVE TO BE SURE (as I thought I was last year0 that ALL OF OUR DOCTORS WE SEE, AND ALL OF OUR URGENT CARE, THE HOSPITAL AND SO ON ARE DEFINITELY COVERED... I went through that online, the on the phone, and then to the insurance website but you can believe they CAN and DO CHANGE their minds once that know it is too late and the new year has began. I cannot lose a couple of my specialists at all, period! And believe me they lie, they cheat they say one thing on the phone - and I've watched good people have to lose their entire life savings to the insurance companies, saying one thing and then doing something else...

So, I am not sure if it is ALL that is on my "plate" and "to-do" lists, plus I feel as if I have NO TIME to write, to really work on my blog, which I am working to change the entire site a far as how it looks and feels... I began working on a few things today..

I know this lawsuit, as I've said now 30 times over the past few weeks, I wished I would have never been involved at all. - it has NOT been worth the mental, emotional, and physical agony, that I have gone through.....

So, I've got several "lists" going., some to do back to doing what i had been doing, my blogging, my activist, the Platinum Ambassador, and my writing, and blog - it requires "a time frame daily", it requires a time when NO interruptions are there, and then is they list of the "have too's" in order to maintain and keep this house from falling down around my feet....

Anyway, I am also distraught that my Rheumy wants me to quit the MTX! Well, that is more for the Lupus, and I've been on it almost from the the time I found out about the AI's - and my PCP has always taken care of the "Lupus" portion of my illnesses, and my Rheumy is more about the RA - thus the biologic, the Sulfasalazine, and a few others... so my Prednisone, the MTX, the Plaquenil, and then finally a med for the Sjogren's - which I looked up and discovered the Pilocarpine.... So, my Biologic, the Sulfasalazine... was taken are of, and my Rheumy knew that my PCP was taking care of my Lupus, it is just easier for me to go to him, for a Lupus Flare, in which I can have several in a few months, or may go for a long time and I never have to go back on the

the huge 14 day dose of the Predisone, in which I hate, but the way I have felt for the past 3 day or so, I almost think I am having a very bad Lupus Flare now, probably due to the stress of it all, and then feeling so stupid when I went in to see the Rheumy & I "seem" okay that one day....

So, my question after all of that to all of you is "DO YOU THINK I MAY BE going through some type of "mental issue" causing this "overwhelming" feeling about where NOT to or TO GO??? I am NOT sleeping well at all.. I have several over this past SEVERAL THE NIGHT TERRORS HAVE BEEN REALLY BAD! IS A PORTION of this mess, to do with how terribly our cities are being treated, and no regard from the "innocent lives" they either take or ruin for sure... I get to where I cannot stand to see the news... it seems every day something else has happened even in our own "back yard" so to speak...... Mom seems to think it is because I don't "rest" enough... which is bull, sure I am up and doing thing outside, inside, wherever I can feel going to do because that is a portion I think of what does keep me "sane"..... Anyway, I close now with a hello to everyone... I guess many are already in preparation for Autumn, the weather and time change, and then the colder and shorter days with daylight, which just drives me nuts, because doing some things outside are hampered by the weather....