The Latest Addition of my New Newspaper that goes out Daily "All Things Autoimmune"

Here is the link:

http://paper.li/ravishingrhia/1438808814

 

Above is the LINK to the Latest Addition of my New Newspaper! This Will be Daily, and I update it sometimes twice in a day or so. It has a GREAT DEAL of the latest information about Lupus, RA, Sjogren's, Chronic Pain, Lumbar, Cervical Spine issues, along with other health information for you to read and use. I had began this kind of as an "experiment" and decided I liked it so well, that I would make this a daily, permanent addition to my blog, and my Facebook, Pinterest, Twitter and other social media informational places. It will have things about new Technology, mostly health but other forms also. I am able to choose what it has in it and "tweak" it for my readers. So, PLEASE use this link where you can put in your email address and "subscribe" to the daily addition. It will send you an update if I do an update, so you can have the latest information.

Bear with me, I am doing a "revised
" look and feel. I've upgraded so I am in a learning curve as to how to do some of the new things I want to do. But, until then I post the link daily in FB, Twitter, IN, and so forth so everyone can find the new paper for the day!

 Here is a "thumbnail" of the top portion of today's paper. This way you have an idea of what it looks like right now...

Honestly, I have been quite pleased with the articles and information it provides. It has made a world of difference on researching the subjects that are important for health issues, technology and how it all effects us....

PLEASE JOIN ME in My DAILY NEWSPAPER "All Things Autoimmune"! News you Can Use for all types of health issues... and more...

MY LATEST ENDEAVOR TO KEEP YOU, MY AUDIENCE, UPDATED ON THE THINGS THAT MATTER TO YOU AND YOUR HEALTH MOST, FROM RA, LUPUS, SJOGREN'S, TO FM, CHRONIC PAIN, AND SO MUCH MORE!

Autoimmune Arthritic Systemic Life Daily – Rhia

Please join my Daily Newspaper that can give you much insight into the latest information of Autoimmune, RA, Lupus, Sjogren's. Chronic Pain, FM and many more health issues, from the latest news, medications, and information YOU can use! I am currently working to really "update" and make it "customized" for YOU, my audience! Thank you, Rhia Steele "All things Autoimmune"

YOU CAN Make a DIFFERENCE WTH THE ARTHRITIS FOUNDATION ON CAPITOL HILL FROM YOUR HOME!

I share this with you! Since I will not be able to attend the AF Summit on Capitol Hill due to having cervical neck surgery, I am definitely going to be an "advocate" online! This link takes YOU to a letter, that you can personalize So, even if you can't make it to the Summit, you can and tell your own story about how AF is effecting you, your family and so forth. I sent mine in yesterday! ALL of these will be taken to Capitol Hill and given to Congress at the Summit! YOUR can MAKE a DIFFERENCE even from your home for the AF Summit on Capitol Hill!

https://www.surveymonkey.com/r/GVQHGDV

HONESTLY, I FEEL BADLY THAT I AM NOT ABLE TO BE THERE THIS YEAR AND REALLY WANTED TO ATTEND! I LOVED IT IN 2014, AND HAD HOPED THIS YEAR THINGS WOULD ALLOW ME TO GO. MY NECK SURGERY IS ONLY A PORTION AND COULD HAVE WAITED, BUT I ALSO HAVE A MOM, WHOM I FEAR COULD BE SUFFERING FROM SOME TYPE OF DEMENTIA, OR WORSE ALZHEIMER'S. THINGS ARE NOT GOOD AT THIS POINT, AND I FELT SINCE I AM HER "ONLY CARETAKER", I COULD NOT LEAVE HER THIS TIME. SO, I MADE THE CHOICE TO TRY AND DO EVERYTHING I CAN TO "MAKE A DIFFERENCE" ONLINE, THROUGH SOCIAL MEDIA, TO SENDING LETTERS TO MY REPRESENTATIVE BARTON AND TO CONGRESS, AND LETTING THEM KNOW MY STORY! 

YOU TOO, WILL MAKE THAT DIFFERENCE. YOUR LETTERS ARE ALMOST AS GOOD AS BEING THERE ON CAPITOL HILL!!!! 

 

The Latest Daily Addition of my newspaper "All Things Autoimmune".... For Friday morning February 26th....

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

The Newest Addition of my Daily Newspaper "All Things Autoimmune" from Chronic Pain and the possibility of Yoga and mindfulness & the Science it, to Green Tea helping Ra (a possibility) a great deal of new information for all of you! Interesting, I drink green tea usually iced especially in the Spring and Summer months, plus I have taken a green tea supplement for years, but more for helping "weight control" due to it's boosting of your digestive system, plus new information from the CDC about about effective the flu vaccine is....


I put my newspaper out daily, and usually I update it and put it out twice daily. The subjects that I usually put out there are things about Lupus, RA, and autoimmune illnesses, BUT, there are also many articles about chronic pain, our environment, about technology, the latest in medical science and its technology and more. So, there is something for everyone in most additions...please check it out and I will post a link daily here for everyone!

The Arthritis Foundation and Arthritis Introspective - Two Creations as One to Give Us Advocates a "Voice" in Our local communities

This is only a tip of the total iceberg from a teleconference I attended last night, but I am totally thrilled about the idea!

The AF has teamed up with Arthritis Introspective to finally create ways "we" as advocates, and Ambassadors and so forth can have our own local community Outreach and Groups available for our towns and counties. I am totally thrilled about this idea and have wanted to do this now for years. So, now seems like the time to get involved in this.


Here is the link to the URL of the non-profit:

http://www.arthritisintrospective.org/

They have a Facebook Page also:

https://www.facebook.com/ArthritisIntrospective

I will be posting MUCH MUCH MORE ABOUT THIS OVER THE WEEKEND!

Blog Post for Feb 2nd For Rheumatoid Arthritis Day!

The Rheumatoid Patient Foundation

has given us bloggers, or those who would like to post 7 topics to pick from to post about for National Rheumatoid Arthritis Day! I had picked the 7th one and am working on my blog post now. But I wanted share to these with you and the article in case you would like post post or blog about it!

 This began in 2013, and done so well, they decided to make it an annual event! I am proud and honored to put a blog post in. Of course for me many of these subjects ring like a bell in the night over things I, myself have been through and I am sure so they do for you. Be sure to include the hashtag ---

#TheRealRD in your posts!

Those are many great topics to blog about ad gives e an idea about where some of my blogging may go this year when it comes to RA!

 

To find out more details about how you can either submit a blog post or even send your thoughts in, see their website at---

http://rheum4us.org/rheumatoid-awareness-day-2016-the-real-rheumatoid-disease/

Boron Borax Therpay for Arthritis, Osteo,RA, Osteoporosis, Joint Pain, Inflammation - A Natural Supplement we often Lack - been known since the 60s

I happened upon an article about Boron or Borax therapy, that proves to be extremely interesting. I know that Borax that I buy in the box and put in my laundry is an all natural type of supplement, and I had heard about studies on it back in the 60s and the health benefits it has on us.

We NEED an amount of Boron in our systems, to help keep us from having JOINT PROBLEMS, arthritis, stiffness, swelling, osteoporosis, even helping to keep you from having kidney stones, and so much more. I had forgotten about it until I read another article this morning, and I am doing some research on it, but I think I will take some Borax (i just used the rest of my box in with Arm and Hammer Washing Soda and mixed them, so I will have to buy another box, but basically it is the very same as going and buying Boron Tablets. 

You can mix like an 1/8 of a teaspoon in a liter of water, and drink it. There are several ways people do it, drinking it during the week, and then not on the weekends, or drinking it one week, and not the next, and alternating. BUT after reading several articles on this, I think I will buy a new box and give it a try. I looked up the pills, but that means another expensive and it is all the same. 

One in a box for laundry and cleaning and the other in a pill form, of the same thing. I think it is well worth the try when you read about the outcome from many people... and of course our doctors, and pharmaceutical companies do NOT want this information to become viral, because if what I am reading it true, it would put some out of a job, and do away with some of the horribly expensive medications we are given.... I am still reading on this but here are a few links....

http://www.health-science-spirit.com/borax.htm


http://cheflynda.com/…/the-inexpensive-arthritis-osteoporo…/


http://invalid.invalid/


And you can do a search and find all type of articles about it...

I am very impressed as to what I have read, and as I said above, I had heard about this several years back, and seen a new article about it, so I decided to do a bit of research on the subject.

I have to go to the market and get a new box, since I just emptied mine and mixed it with Washing Soda, I mix both of them and put it in my laundry, and use it around the house as a natural cleaner, with no toxic chemicals in it... 


Of course before you try it, I would make sure it does not interfere with any of your others medications, and you may want to ask your physician. Although for myself, since it is a substance in our bodies, that we probably lack due to all of the other junk and chemicals we put in it daily, I see it like a green tea pill, or other types of supplements. I already take B-12 in pills and monthly injections.

But, as I said I am NOT a doctor, so make sure you do what you need to do before trying this, or anything....

Monday Mornings Latest Addition of All Things Autoimmune from Lupus, Chronic Pain, the Environment, and much more!

Monday Mornings Latest Addition of All Things Autoimmune from Lupus, Chronic Pain, the Environment, and much more!


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

Autoimmune Arthritic Systemic Life Daily – Rhia

 

 

 

Glenn Frey of the Eagles & His Suffering from RA & The Medications and Treatments that can be almost as bad as the diseases....

Gosh How many of us discuss this daily! With RA, Lupus, and any type of autoimmune diseases, the medications themselves can cause as much havoc with our bodies as the diseases themselves. Do I ever know this one, after the double set of cellulitis on each thigh, that then turned into abscesses, that took over 7 MONTHS to finally get to the place that I am not on antibiotics, they are not debriding them weekly, and then I have had double pneumonia at least twice... I know for a fact that one of my RA biologic medications caused the cellulitis that turned into the nightmare of abscesses. After having those incised, and for weeks they were still not healing, finally I was sent to a wound care specialist at Charleton Methodist in Dallas. I have no doubt had I not went to them, I would have been in the hospital with IV antibiotics and no telling how bad of shape I could have been in... I was so terrified of the MERSA virus being a part of it, I kept seeing that those two huge holes in my thighs were turning almost a dark brown/blue in color and I feared the worst each day...although the left one finally sealed over, the abscessed again, had to be incised again, it healed just before I went to the Wound Care Place... but the right one was 7 trips for 7 weeks and it just finally sealed over about 2 weeks ago... yet the doctor released me, and said it is still healing some on the inside... each day I have to check it though to make sure it is not abscessing again. SO FAR I have been fortunate... even with the double pneumonia, Ive had it at least 3 times, once before being diagnosed with the autoimmune illnesses... and even though I probably should have went to the hospital, I stayed at home, done everything the doctors told me to do, and made it without having a hospital visit... BUT, that does not mean that it will not happen... I know now what to watch for... I had no signs of having pneumonia the last two times other than a severe headache, then I began to hallucinate, and finally figured out I was running a high fever... over 103 degrees... which sent me to Urgent Care immediately! Again, I was one of the lucky ones... but it meant no more biologics for now, they took me off the MTX, which I had been on for 5 or more years... and FINALLY after having my stalled pain pump replaced, my Rheumatologist started me on Minocyline... an antibiotic they use for RA.. BUT, I figure I will be going on Xeljanz, within 3 months... yet, the RA and Lupus are continuing to take their toll on my joints... I have an 80% compressed disc in my neck, and need surgery very soon....and I still need the lower lumbar/sacral surgery... both I know are getting worse because of the Lupus and RA... so are my hands, fingers, thumbs and wrists, that are showing signs of looking crooked...especially my thumbs which hurt so badly.... I have lost a great deal of strength and grip in my right hand, and I am right handed.... I just yesterday threw out 3 MONTHS worth of that one biologic... and it almost made me sick to pitch out medication, that probably cost thousands of dollars... but I cannot return it, I cannot do anything with it, and I do not wish to ever try that one again... not after what I have suffered through... so to see others, and then see that these diseases do not show any mercy... they effect the famous, the folks like myself, the young, the middle aged, the elderly... and can take a life so much, much earlier than should be taken... it is a crime, that until research finds a cure, a reason, a way to stop these hideous illnesses in their tracks... none of us are immune for sure... 

http://www.thewrap.com/glenn-freys-death-rheumatoid-arthritis-medication-can-lead-to-disaster-doctor-says/

A Few pics of me Signifigant especially to me but hopefully an inspiration to others also

I never thought I would ever see the day, I could fit in these jeans again. I have had them for more years than I care to tell, something like 20 at least - and after I was diagnosed with Lupus, RA, Sjogrens, had all of the surgeries, and then the pain pump put in my right side, I honestly never thought I would be able to wear these, or any waist line high type of jeans... thank goodness I have always been a huge fan of low rise jeans, they fit under the pump... but recently I lost some weight and decided to drag these out of the back closet, wash them and give them a try! And Ta-DA! By heck they fit!!!!!

So, for me this was a Kodak Moment... after going through the weigh issues after medications, surgeries, and I would take some of it off, then have surgery again, could not exercise etc.... or would have to be on high doses of corticosteroids for a flare, and here would come the weight on again.. I have been able for the most part to keep it to a decent level, but it was still depressing for one, to have issues that you have no control over that cause weight gain, loss of teeth, hair thinning, skin discoloration, not including the scars from many surgeries, knee replacements, shoulder replacement, the pain pump incision and also it sticking out from my right side.. so this was a moment for me, that made my day, week, month and part of the year!

I SHARE these with you... in a two part scenario, for me, for one, so I can see that I can still have some what of a decent figure, even though all I have endured... and then of course with my age, etc that contributes to some weight issues, plus I had battled my weight all my entire life after being an overweight teenager... So I made these this morning, for a 2nd part to INSPIRE ALL OF YOU TO KNOW  YES there are times we look and feel like HELL! But then there are times like today for me, THAT I WAS ELATED TO KNOW that I could still put these on, and love the way they looked on me ) So remember to record these types of milestones in your own life... and share them to inspire others...

Setting The New Year Tone as I Deal With RA, Lupus, Sjogren's, Trying to Complete a 3rd book, Life, Family and so much more...

Every Year so many of us have a "List to Live By"... for the New Year. Some call it a list of "resolutions", "Changes", a new way, a different attitude, motivation for making things different, making what you want in life happen... Whatever you "call" it... we try to set the "tone" for our New Year.

Whether "chronically ill" or not... each of us want things to "change". Now, many of us may be completely satisfied with our life "as is"... but human nature gives us this innate intuition to never stand stagnant, to always want to evolve, to make our mark on the world, or at least our own home and community. As a whole, although when you hear the news it does not sound like it, I still feel "human nature" basically wants to "do well"... to help, to be that change maker...

As I have prodded through these past 7, 8, 9 or more years of chronic illness and chronic pain, I've noticed that it seems for the majority of us that are chronically ill, whether it is an Autoimmune Illness, Heart Disease, Cancer, or any number of diseases, syndromes and/or illnesses "we" as a whole tend to try even harder to "change" what that disease is doing not just to "our bodies and lives" but to all the others we see on a daily basis suffering from the very same illnesses. We tend to be more a part of the "change makers", whether that means a local community awareness, or a National Campaign and being an "Ambassador", Volunteer, Activist, a "voice" such as helping so many of our non-profits, such as The Arthritis Foundation, The Cancer Society, The American Heart Association, Lupus Foundation, The Pain Foundation, and the many, many, charities and organizations that "go to bat" to fight not only locally, in our states, but nationally to make awareness known within our Governmental Bodies, to get finances for more research, the race for a cure, for answers as to "why" some of us suffer so badly from such horrid illnesses, what causes them, how to treat them without destroying a patients life, and how to give people back their quality of daily living!

So, when our chronic illness and/or oain issues bring us to the place we no longer can "work" our jobs, or do many things we once could do, we find ourselves seeking a way to help STOP these diseases from ruining more lives in the future. With the technology, and how we have evolved globally, with a few key strokes, we can contact our state, our county, our city, and our National Government Officials. We can provide all types of very usual assistance without leaving our homes to "make that difference" we so want to make in life. I know some people that probably spend more hours a day now as a volunteer, activist, etc... than they did actually working a 9 to 5 job that nearly killed them... but we can "take off" for a week if we are ill, or work an hour a day, or a few hours a month.... however much "we" want to put into assisting these foundations, is so appreciated. And many of us, like myself have been even honored and rewarded by being sent to Washington DC to stand on Capitol Hill and tell our stories! So, activism, can be and is such a rewarding part of a chronically ill person's life. We feel we are "contributing" even though we may not be able to work hours a day, or leave our homes... we "make a difference"... and not even spend a penny... but give of ourselves and our time... which is definitely valuable... sometimes more than money... the value of "our time"....

I had been looking on Twitter a bit ago, and there was a great idea that I decided to not only to share, but to do. Take an empty jar, and each "good thing" that happens within the New Year, jot it down on a small piece of paper and put it in the jar. Then in the start of the next New Year, get those out and read them. As I said, all too often we "recall" all of the crappy, the bad stuff, that happens within a years time, yet we don't remember those "good moments" and maybe they are "small" but memorable. Then see just how many have filled that jar from that year before. I have already been able to write down 3 or 4 things and put in the jar, and this is the middle of January! Maybe I will need 2 jars to "hold" onto those good moments... those moments that help to make the bad ones seem not so bad.

So, the "title" of this post, is a bit deceiving in some ways. I gave the impression this was going to me more about my own "revelations" for the New Year, and the "tone" of how I "want" my year to be for 2016. I've never been one to set expectations to high, but I do try to give myself "goals" to achieve... yet I have also had to learn that when you have illnesses such as Lupus, RA, Sjogren's.... and so forth... those things you "want to achieve" may get put on the back burner, for those times you are in a "flare", or you are having surgery, or sick, or going to the doctors... there can be all kinds of things that interfere with those "good intentions"... and it is not that you may not achieve them... just not in the time frame you thought you would. I had wanted to be a published author for 20 years plus, and then was with two books within less than a year between them! My 3rd book, has been sitting here mainly completed on my computer, but needing to be put in some type of order now for gosh 3, 4 or more years. But, life and illness... have had to come first... thus the book WILL GET PUBLISHED, but I no longer "pressure" myself... Due to things beyond my control over the last almost 3 years, I began getting it together, then had to leave it... now it will take me weeks to even get back into where I am, what I have in it, and how I want to continue... and I will get there... but I have to feel well enough "physically" to be able to sit at the computer several hours at a time, hopefully with little interruption for weeks, at least 2 or 3... or I will never be able to "delve" into where I am, and where I want to go forward.... so I may not be able to do as much as I want on it, until I have the cervical neck surgery... I can't sit very long at the computer typing right now because of that disc... when it presses down on the nerves, and I have pain in my shoulders and down my arms into my thumbs... it makes it very difficult to "find my voice" to write...

It is different with my blog... I can write a bit, get up, do a few things, and come back to "finish" the post...

But, the "tone" for my 2016 is to try my best to get as far on the 3rd book as I can to prepare for it to be published. I also need to get myself back into "physical shape" and I mean back to walking when it warms up, taking the dogs out walking, and getting out of the house... but I also face at least the one surgery... and maybe two this year... my lower lumbar and sacral spine gives me hell when I try and sit for very long also... and after Friday's ordeal of driving and doctors in Dallas all day long, I have suffered with a great deal of back and side pain... hell I've wondered if I have another kidney stone, the pain has been so bad off and on...

So, the "tone" again is to do as much as I can personally to my home, bless it's heart it needs so much work, and myself... and try to "enjoy" each day whether ill on the sofa, sitting here at the computer writing, or online...walking my pups... walking myself... and hopefully spending several times this year for a day or overnight stay at Winstar! Gosh how I miss that Casino! I walk in and the world melts away, at least for that time you are there...

So, take time to "set your tone" for 2016.... make yourself a "good moments" jar... and in 2017 (when I get to trade in my Prius for a New Model) see how many of those truly make you smile.....

Just a Quick Hello and more to come.... Wound Care appt(Last) hopefully today and my Rheumatologist appt. so a LONG DAY in DALLAS!

Just wanted to touch base and say "thank you" to ALL that commented on the CDC docket about the Pain Medications. Over 4,000 commented, and I had hoped for more, but I don't think that counts anyone who also "wrote" in, and I am sure some did send letters...

I am headed for Dallas to hopefully do the final visit to the Wound Care people for my abscesses. It got detained due to the pain pump surgery, and the holidays, so now I have that and my Rheumatologist appt both today... and I hate having to be gone to Dallas that long... even though one is mid=morning and the other early afternoon, it makes for a long day driving... especially when I am NOT headed to the Win-Star! :)

I hope the hell to be able to go soon. I am so sick and tired of either cleaning, cooking, being ill, having surgery, getting over surgery.... taking care of doctors stuff, insurance stuff.... and seeing doctors... I am ready for a break, even if for a day.... hopefully overnight....


Anyway, I wanted to stop in, and say that I am here, been somewhat busy and also under the weather this week a bit.... not sure other than I've been exhausted... but after running a high temp all weekend last weekend, I feel like that and everything else contributed to it all...

More over the weekend....

Starting 2016 The New Year Off Right! Lupus, Joint problems, Surgeries, Pain Pump Replacments, Cervical Disc Surgeries, & Seeing the "Positive" Side of a New Year.

Morning Everyone! Well, I must say, I know there are MANY, MANY of us that are GLAD to see 2015 come to a close. Gosh, the number of people that I've came in contact with both on Facebook, and here in my hometown, that have either endured so much loss, or have been extremely ill, in the hospitals, had surgeries, have had major issues with Lupus, RA, Heart problems.... Sjogren's and the list just continues.

I know I face, (now the the 1st one the pain pump replacement surgery is done) at least one surgery. I have to have that cervical disc above where my doctor repaired the others (he is kind of wishy, washy but I think it's probably C-2-C-3.. not sure but am going to look it up. He did an X-ray and saw that I have a disc, at least one, that is 80% "collapsed" which is causing all of the severe neck, shoulder blade, and down my shoulders, into my arms, wrists and even thumbs... pain... at times it is almost unbearable... if I drive even to Dallas about 40 miles or so, it hurts so badly... so I know that has to be dealt with.

Also, the lumbar/sacral disc at L-5 (I think) and S-1, anyway, right at the bottom of my lumbar spine where it begins my sacral spine is also a mess... plus I have some issues with the "opposite" of scoliosis, where my spine tilts "inward" rather than outward... and I've had a "sway back" all my life... so that is certainly not helping but I don't think there is anything they can do about that, but he can fix the disc down there.

Once those things are done, and then I can go to my Rheumatologist, and we re-evaluate all of my medication for RA/Lupus etc... and possibly make some changes then I may begin to see some positive changes for me as far as function of what I can do, and lesser pain, hopefully.

So, even though I "make" A New Years "change things" list... some of it is more those types of things, so I can again have some quality of life...

I also know we must "deal" with my Mom, and all that has been going on with her.... she is much better after the injections into her lumbar spine, which is awesome, but the issues about possibly having "dementia", or worse, ALZ, have to be looked in to...

Other than that, I want to be able to do MORE of my advocacy work, and get back to cross my fingers, eyes and toes, of finishing my book... I've been trying for 2, almost 3 years now, and was on a roll, then between the accident with Jim, the lawsuit, trial, illneses, my teeth and losing those, then Mom being sick, it seems I cannot either find the time, or have enough "energy" to stay and type on it. I have some other things that I had not thought about that I am adding to it. When I was telling one of my high school friends I grew up with about my "home life", when I was young... she told me that I really needed to address those in the book. They in themselves caused me to "think" and do, or not do things throughout my entire life. Nothing that Dad did that was "bad... he was a great Dad, BUT his being over controlling, even when I was in my 30's, and him trying to "help" but he was also trying to place things that he went through during the depression, "on and in my life"... and thus things like me marrying much too young etc... all have had a very prominent effect on how I've lived, and the things I've done, and why I didn't do some of the things I so wanted to do....

I inend on giving YOU, my BLOG READERS much more "facts" and information about "All things Autoimmune"... I hope to really ADD some very important issues, from medications, from how the government effects our lives, about the latest things to get help. hopefully get more people involved in GOOD clinical trials (I know people that have been truly amazed in clinical trials) and work with WEGO, The Arthrhtis Foundation, With the Pain Foundations, plus others such as the Lupus, Sjogren's, RA... and more things that can help YOU as patients, caretaker's. family, friends.... to understand the way these illnesses effect each and every part of a life, from physical, mental, emotional, spiritual... and why "we" do or do not do, things.... due to often "invisible" illnesses and pain....


One for instance, I had "major surgery" last Monday. I had my pain pump that "stalled" replaced. I am really not supposed to be doing much of anything, BUT I am by myself for now, so there are things I must take care of... and can't wait... So, I had not been to the market in a week, and needed a few things... NO, I was NOT feeling the best, but I got dressed, "forwent" the makeup, and went to the market. Well, I was not "moaning" in pain, or even acting as if I had "surgery"... the only things I did do, is ask the guy bagging my stuff to keep my "bags" light this time, because I was not supposed to life anything over 5 pounds, and was not supposed to use my arms over my head... well there are MANY things a person needs to get, reach, etc... and it calls for putting your arms over your head..

Of course I got home, and I was "good" I did bring in one bag at a time, rather than grabbing several, as usual... and tried NOT to do anything he told me NOT to do... yet, people around me in the market, unless I "told" them would have never known I had "surgery" or that I was in pain..... we sometimes "hurt" and it shows.. but we also have learned to "suck it up" at times, and try to not let that type of thing effect our lives... I don't want to think someone feel "sorry" for me... etc....


Okay, well I need to get some other things done, but I wanted to "catch up" as to what 2016 shall mean HERE, and what I plan to try and do to HELP MY READERS!

Wishing YOU and YOURS a blessed, healthy, peaceful, calm, faith filled, renewed hope and love for 2016!

Rhia

Autoimmune Arthritic Systemic Life Daily – Rhia (All Things Autoimmune- Rhia's Daiy News paper)

Autoimmune Arthritic Systemic Life Daily – Rhia

Lots of the latest on Chronic pain, Health Care, Technology, and more... I update it at least twice daily, so be sure to mark the link and see what the latest on, Lupus, RA, Chronic Pain, Hospitals, and many other things even Technology and our Health!

I cannot EXPRESS and IMPRESS on ALL with Pain Issues (Chronic Pain) PLEASE make your COMMENTS & STORIES KNOWN TO THE CDC!

I know this is like, what can "we" do? Well WE can do a great deal! I have watched MANY of us whether via Email, or standing on Capitol Hill MAKE A DIFFERENCE! In ARTHRHTIS, IN PAIN ISSUES, IN HEART PROBLEMS, IN DIABETES, you name it, it takes US to speak up, and tell our government and everyone what and how we are effected DAILY with illnesses, that are chronic and often horribly painful!

I've been trying to "peck out" my 3rd book, which is my own Journey with Chronic Illnesses, and all painful, Lupus, RA, Migraines, Joint surgeries and replacements, crumbling spinal issues, I need TWO MORE surgeries one again in my neck and one in my lower lumbar spine.. My internal "pain pump" stalled about 3 months ago... or more... BUT DUE TO ABSCESSES CAUSED BY RA MEDICATION (ONE INJECTIBLE) AS FAR AS WE KNOW.. and spent over 3 months with cellulitis, that turned into abscesses on each middle top thigh... the 2nd on sent me to a wound care specialist, of which I have been tramping to Dallas once a week now for 4 weeks to get it well enough to HAVE SURGERY! I have "oral medications for pain" but THEY CANNOT TOUCH MY PAIN PUMP! There is not enough oral meds they can give me to help just even take the edge off of my pain... thus my book GETS LONGER, AND I am often unable to sit here just to type it out! And it is already about 500 pages plus long... so you can imagine...

BUT THIS IS A SERIOUS MATTER! No matter whether you are a patient, caregiver, know someone with chronic pain, or just someone who cares about us getting the medications we need... please make sure you go to the link and post your comment...

Again here is the link and it is NOT difficult to do...

http://www.regulations.gov/#!docketBrowser;rpp=25;po=0;dct=N%252BFR%252BPR%252BO;D=CDC-2015-0112

And even thought we have until "January 13th PLEASE DO NOT PUT IT OFF... WITH THE HOLIDAYS, YOU MAY ALLOW IT TO FLY BY AND MISS THE TIME FRAME!!!

If you want to you can even write a letter and it will be taken also.... so if you need that information let me know and I will post the docket number, and the information you need to mail it in "snail mail"....

TOADY IS THE DAY TAKE TIME TO GIVE YOUR OPINIONS on this Open Docket from the CDC in reagrd to Pain Medications, and "Regulations" - you have till Jan 13th

Everyone DO NOT FORGET ABOUT GETTING YOUR COMMENTS IN ON THIS CDC/HUMAN RESOURCE OPEN to the Public comments that begins today and we have until Jan 13th (I believe to put our comments in) here is the page with everything on it.
This is OUR chance to GIVE OUT thoughts on how many of us cannot be without the proper medications in order to have a "quality of life"..... I realize there is much controversy out there, but we need to give our suggestions and opinions now.... there are many people that can't afford a "specialist in pain management) ... so their PCP help to take care of that... and they do a great job (the ones that do it properly) but now our doctors are running scared of being shut down, or their licenses taken away for good, due to all of the "jumbled" mess that you can read that is included with the docket and so forth.... take time and tell your "story"... tell your own experiences, and let our government know that some of us need those medications and I say it frequently, to have A QUALITY OF LIFE!

http://www.regulations.gov/#!docketBrowser;rpp=25;po=0;dct=N%252BFR%252BPR%252BO;D=CDC-2015-0112

CDC OPENS COMMENTS From the PUBLIC ABOUT OPIOID MEDICATIONS AND CHRONIC PAIN!!!!! PLEASE READ AND GET YOUR COMMENTS IN! WE HAVE A VOICE!!!!

http://nationalpainreport.com/cdc-re-opens-door-for-public-comment-on-opioid-prescribing-guideline-amid-scrutiny-and-criticism-8828673.html

CDC Re-Opens Door for Public Comment on Opioid Prescribing Guideline Amid Scrutiny and Criticism

Posted on December 11, 2015 in Consumer, Pain Medication, Government with 11 Comments

Under mounting criticism from patients, physicians and industry, the Centers for Disease Control and Prevention (CDC) announced it has opened a second period for public comment on its Guidelines for Prescribing Opioids for Chronic Pain, the agency made public in a notice in the Federal Register.
CDC’s draft guidelines will be available on Monday, December 14, 2015, at http://www.Regulations.gov for review and comment. The public comment period opens December 14, 2015 and closes January 13, 2016.

see the link about with the rest of the information!!!!!


Here is another link about this that came out this morning!


Will CDC Start Listening to Chronic Pain Patients? — Pain News Network

"Sharing" My Annual Christmas Letter with Each of You! - And Wishing you a Wondrous Holiday Season Despite Chronic Illness/Pain,RA,Lupus,FM, Sjogren's and More

I debated as to whether to "share" this with everyone here or not... but I feel I truly need to share "my own family, trials, tribulations, and hope that through my own "life's eyes" you can find your own "spirit" to write, email or tell your family, and extended family that "life" can sometimes be not so great, yet the "hope, faith, peace and spirit" can exist in spite of all that life decides to throw our way..... so here it is....




              ********** And Here’s A Merry Christmas Straight to You From Texas!*********


I feel as if i just completed my “Annual Christmas Letter” and once again, another year is flying by quickly. It is like with each year that passes, they seem to be shorter in length. Yet, it seems it takes me 3 times as long to accomplish anything!


Age, a subject most of us prefer not to talk about in length. Another thing is that with each birthday celebration, I feel like they come around twice a year rather than once. As I have told my son and daughter, Jason (who is 37), and Amanda (who is now 31), enjoy each moment, and savor all of the memories you can soak in, because as it used to feel when we are young, time seems to “drag” by,

Then we become adults with jobs, families, spouses, and the hectic times we live in, and time just flies by, and sometimes our memories of the good things we have seen, done, accomplished, been through, all tend to fade…

The holiday seasons always tend to bring back so many wonderful memories, of those Christmas’ when the kids were little, all of the decorating, baking, cooking, and parties that I had and went to, and how life gives us a great deal of good times, yet we tend to take them for granted. I know I have at times for sure.

Then with age, definitely comes some wisdom, and as I look back, I have had many “fulfilling” adventures, even though at the time I may not have realized it. Yet, when I think about my trips, whether vacations, with my parents, or with my own kids, or the times I took off on my own, and kind of let the wind carry me away… I always knew my “destination”… but it was always the journey to get there that made it exciting, and finally allowed to me look back and see just how “strong” (emotionally and mentally) I’ve been for the most part in my life.

So, as I try my best to “tap out” another Holiday Letter, I find myself almost as a loss for “words of true spirit” and good things from 2015. There is so much that has happened over the course of 20 plus months to my family and myself, that it will take another small “novelette” to give all of you the details of what has gone on.

The accident in 2014, that Jim, my husband was in, and the lawsuit that followed, finally came to a close the first week in November. Much to all of our surprise, it did NOT end on a “good note” for us. Basically, the jury decided it was NOT the truck driver’s fault (even though he completely ran over the back of our car and never slowed down etc.) and even though the other side tried to say our “car” was not in good shape, (they had someone say that the hood flew up while Jim was driving the car”, which I know and all of us know that did NOT happen, and never would have. My car, was in perfect condition to be on the road, and that hood was completely latched down, and did not just “suddenly” fly up. We have no way to “prove” it, but even our own lawyers tend to believe there was some “hush money”, and these “so-called” witnesses, that happened to have been outside in their yard, on a very busy I-45 coming into Dallas, and at that moment “saw” the hood open… that chances of that, you could win the lottery before that would happen. Yet, we have no way to prove that people lied on the witness stand, and I also feel there was something odd about the “jury”… I felt again, someone had been “paid” to keep their mouths shut, OR rule “no one at fault”… anyway, it left all of us devastated, more than you can even know. That accident has “wrecked” Jim’s life, especially physically, but mentally and emotionally. It totally wrecked my life, harmed my own health, and upset of course Mom, and my two children Jason and Amanda. So, due to a “truck driver” who was “on a cell phone with his brother”, and ran over the back of our car, we still basically “lost” any and all help with Jim’s medical bills, his future needs medically, he is unable to work full time due to what they now feel was more of a concussion than they first realized, he is partially paraplegic, and can walk on a cane some, but needs a wheelchair if it is a longer distance… and more than that, he moved back to Seattle 6 months ago. I am still not even sure why, other than he felt he was a “burden” on me… and that my health was suffering, and I was having to do everything, he could not cook, drive, even get down the steps by himself, and then I had Mom’s things I am doing also… thus we are still friends, and talking, keeping in touch… but whether we will ever “regain” our 13 YEARS together, 10 of those married this year in April, is still yet to be seen.

That is why partially I almost decided “not” to write this Annual Christmas Letter this year. I feel there is not a great deal of “good” that has happened to any of us over the course of 2015. In fact, Mom has not been well, and she has issues with her lumbar spine, and is getting ready to have lumbar injections in the next week or so. My internal “pain pump” also “stalled”, & I need surgery to replace it. But. 4 months ago I came down with two “lumps” one on each upper thigh, originally thought to be cellulitis. After 4 or 5 weeks of antibiotics, I was sent to a surgeon, to “incise” them, and he was NOT the doctor who should have done those procedures. I now have been going to a wound care specialist for 4 weeks in Dallas every week, so they will get well enough I can even have surgery. I also have lumbar/sacral back problems that need surgery, and without my Rheumatoid Arthritis medications, (they took me off them when I had the increase of infections with the cellulitis), so my pain level, without the pain pump, and even on oral medications do not even “touch” the horrid pain I’ve been in now for 3 or 4 months.

Mom also had some issues due to medications, and had some kidney functions problems, that they feel have been cleared up. But, she is also in pain, with her back, and the sciatic pain, but also she at 80 this year is suffering from arthritis pain several places. She had been on Celebrex, but it is the NSAIDS that caused the kidney function problems, so she cannot take any NSAIDS to help with arthritis pain. She is also on some pain medication, and we hope the epidural injections give her some relief from the back and sciatic pain.

Amanda, Jimbo, Heather, James, and Logan are doing well. I finally got to visit with them during Thanksgiving. It had been a long time since we had seen one another, so I was so thrilled that they got to come up, even though it was not long enough. Heather, their daughter will graduate this year, and already has decided to go into the Marines. She wants to be in the medical field, and feels enlisting will give her the education, the discipline and all she needs to succeed in the medical field. I am so proud of all of them. They are a wonderful wife and husband, Mom and Dad, and Amanda is an awesome daughter!

Jason has a new job, working with some electrical devices that he enjoys. So, he is doing okay. He would like to get a bit more established, and get an apartment up in the area where he is working. So, he is busy working to fulfill his goals, and he also plays guitar and sings with some of the local bands in the Dallas area. He really loves the guitar and playing. He has always been so great at that. I love music, dancing, and singing… and wished I had the talent many years ago, to do something in the music field.

But, I do write lyrics, and still practice my singing and playing the drums sometimes. I just bought a pair of boots and jeans (well waiting on the jeans to come in, I ordered them too large, so waiting on the smaller pair to come in), so I can go out and see if I can still “scoot a boot”. It has been a long time, and have not tried since both knee were replaced. So, I hope I can still love across that dance floor.

From all of us, myself, Mom, Amanda, Jason, and family… we wish you a very Happy and Merry Christmas! May the New Year 2016, bring you peace, good health, happiness, and hope. May you be blessed and overflowing with all things good!

Love you…. Pam (Rhia)

Sharing Life, Holidays, Up's, Down's, Reality, and Dealing/Coping with Holidays when You are Chronically Ill/Pain & have a broken heart, along with problems that follow....

First I share some "Good News" and Happenings lately in my life. After Losing my Pug, Tazzy here about 3 months ago, and she was a Christmas Present 14 years ago, from my "husband", (we are now separated) & Bub's and I, (my Chiweenie, who is 5) were really down and out about the holidays. My "body" really would not allow me to climb into the attic for the big tree and decorations, so I bought a small tree, and put 14 years of Sleigh Bell's, one for every year my husband and I had been together.

Then I and Bub's have been fortunate enough to have a brand new "fur-baby" addition to the family just this week! He is only about 3 months old, and his name is "Peanut". I've officially adopted him, so he is getting used to myself and Bub's, and we are learning to adapt to a new baby in the house! But, I think he is really the best "Christmas" present we could ever have, and I am so grateful he came along at just the right time.

I adopted him from a local non-profit here in my area called "Tales of Hope". It is all volunteers, who take the pups into their "foster care" until they find homes and owners for them. I am happy my Vet suggested I adopt from them, and so far it has been a very peaceful and simple thing to go through. He came and had a "house visit" for 4 or 5 days, to see if he and us were all a good fit, and then just a matter of a bit of paperwork, they take care of his puppy boosters, micro-chipping, and then neutering, in a few months when he is old enough... so we are happy he has joined us.


Here are some photo's I've taken, of them, of myself lately, and me trying to put "me" back together again, after my husband no longer here, and then of course we lost the lawsuit over the 18 wheel tractor trailer that RAN OVER HIM WHILE THE DRIVER WAS ON HIS CELL PHONE WITH HIS BROTHER!

Needless to say, I know I have told some of that story, but was kind of under a "gag" order until after the trial, which was the 1st week in November. You can imagine where that left myself, but much more than that my husband, who suffered MANY terrible injuries, of which left him partially paraplegic, without some of his "memory for things such as current", and harmed his concentration levels a great deal. All of that with the pain and suffering, from having his back basically broken in "two", with 9 fusions down the thoracic spine, and wired together... he has more "broken" ribs, that not, and a concussion, that they did not realize how badly it effected him until months and months after the accident. He is a web developer, designer, and has been for 20 years, and that takes a huge amount of concentration, and the ability to "hold onto" information as far as not only long term, but short term... which all suffered from the accident. So, without any settlement funds, he is basically not able to get health insurance, cannot apply for federal disability because he had worked for himself so many years, and made well below the amount to pay in social security. The job he had before then, he did pay in, but as we know, that has to be within so many "months" before you apply and he of course did not have those "units" before, since it has been years since he paid in from a regular job.


The pain and suffering harmed my own health of course, and he had been somewhat my "caretaker" when I had surgeries, or flares with the Lupus/RA, or was too ill. He did some of the cooking, running errands, going to the market, etc... and after the accident, he could not even walk down two steps at our front porch, much less walk in a store, drive, or do anything that required, bending, lifting, carrying and so forth. So, as any spouse would have done, I "negated" my own issues, as far as health, trying to help him heal, both physically and mentally... all the while I started getting ill with more flares, and just have one crisis after the other with my own health, and mentally of course I felt almost as if I had "lost" myself and him... I feel I was "grieving" over losing my own "health" and then to watch him change, I grieved over losing him and us.


I know in MY HEART AND SOUL.... THOSE PEOPLE on THE OTHER END OF THE LAWSUIT FLAT LIED IN DEPOSITIONS, AND ON THE STAND, I BELIEVE THEY "PAID OFF" THESE TWO SO CALLED WITNESSES, THAT I KNOW COULD NOT HAVE POSSIBLY HAD SITE OF THAT BUSY HIGHWAY COMING INTO DOWNTOWN DALLAS, I-45 THAT DAY! But, I KNOW SOMEONE USED THEIR MONEY AND POWER, AND PEOPLE TO LIE, thus we lost the suit...

BUT, WHAT GOES AROUND COMES AROUND.... IT ALWAYS DOES... AND SOMEDAY, they WILL PAY FOR THEIR OWN WAYS, in some form or fashion... we "never" have to take "revenge" for I've seen it happen too many times... THOSE TYPES OF PEOPLE, are taken care of by their own misdeeds. We must just let it go... and "Let God".... I guess would be the proper saying.... How how, some day the "truth" will come out.... it may not "help" us by then, but when it does, it will effect their lives, and then someday they may understand just how horrible our lives have been, and what they have taken away from a marriage, a family, two people, and all we feel we "lost" within those seconds of that accident....


All right, so now I have that part out.... I am taking one step at a time, one breath, one "breath's space", and one moment, day, week... as they come... There is not much else I can do but either "give up"... or move forward... as the song, "too much time to make up, everywhere we turn, time we have wasted on the way, too much water moving underneath the bridge, let the water come and carry us away"  Crosby, Stills, and Young ...


And I have experienced so many wonderful thing in my life, things I felt I would never be able to do... travel by myself to states and states... move to a wonderful city and stay for 5 years, Seattle, snow ski at Wolf Creek Pass CO, see the beauty of Santa Fe, see a baseball game in Phoenix, make a drive all the way to Nebraska to meet a friend, to have many friends that are "miles away" but close at heart... publish not just one but 2 BOOKS, and working on this 3rd one.... dance, sing, play the drums, write music, play the piano and keyboard, go to college and get my Associate Degree, although NOT in the subject I wanted... run a "retail women's store".......see the ocean in FL, in TX (The gulf), the the Sound in Seattle, take a ferry to Bainbridge Island, see the beaches in CA, Go to Vegas, have many vacations I remember as a child with my parents, experience things I thought I may never.... BUT, STILL, I have so many more I want to do, to see, to experience, and of course go to WASHINGTON dc and "stand upon the White House Steps, and tell Congress how I feel about those in need with Lupus, RA,JRA, Osteoarthritis, and many more chronic health conditions....


My "hopes" are that my life gets back on a "new track", in a very good way beginning January 2016. My hope is that I can get back to my writing, and finish my 3rd book, and have it published. I also hope that I can find the "finances" somehow to get my home "finished"... there are so many "small" things that need to be completed, and without lots of cash, that makes it difficult to do. I really don't need a great deal of materials, and what I need is not all that expensive, but it is the "labor", and finding someone to come and do what "I can't do"... I can paint, sand, (have a new idea about my kitchen,bathroom, and laundry room floors that will cost a lot less)... I need some wall boarding put up in the spare bedroom, and in my laundry room. But, the most expensive thing I truly need is a new roof on my house. This one really is in bad shape, and I am very concerned about the Spring and Summer, and stormy weather... plus my entire outside of the house needs painting, which some of that I can do... it is the higher parts, where I have to be up on a ladder higher than I should be that I will need help with. I am going to try and put new "hog wire" fencing up around my back yard, and most of the posts are there, but I need some help getting a couple of dead trees out of the way, and then probably getting the fencing tight enough, plus this back 1/2 acre or so of land that is mine, truly needs to be completely cleaned up. I have a huge pecan tree that died and most of it is down, but it needs to go... plus some other smaller trees be cut down, and trimmed... then I have a piece of an old bus, that was here, when I bought the house, and it needs to be hauled away. It is old, an eye sore, and someone could probably take it with a trailer, and sell it for the scrap metal... so some things are more just time, others I need a bit of cash, and others are in need of assistance, and then of course the roof, that means about 5,000.00 or so....

So, my hopes are that I can stay well enough, to get at least "some" of these projects accomplished as far as the house, I can finish my book and get it published, can get a surgery out of the way I am in need of, and maybe two.... plus just find "myself" a new light, a new path, and follow my heart... go back to dancing, singing, listening to music, and doing what my "body" allows me to do....

My wishes are that YOU, shall also find your path, your light, and your "love" of what ever that may be, whether of the human heart, of a new job, a new place to live, or just doing some of the things in life we tend to put off.... and we never know if "tomorrow" nor the next breath will be here....

I am putting up some pics, and links of some of my "wishes", and my ow hopes for my life the comes with each step I make forward..... Honestly, I've spent way too many years putting everyone else "1st" in life.... and all of what I want, need, or wish always goes on the very back burner... and there shall be some that are not "happy" with this decision... but I am chronically ill, I have many health issues, and I stay in severe pain most days, and I feel like if I do not put my foot down, and begin taking care of ME... I will regret things later as I get older.....


I hope you find the courage to put "you" first... and put the things in life that are important to you, on the "front burner"....

Busy Time and Trying to Keep my Head on Straight, Keep the Brain Fog from setting in, getting closer to the pain pump reclacement surgery, the horrid, almost Unbearable Pain with my RA/Lupus, Holidays a NEW Fur-baby! and so much more....

New Direction for my Next Book below...

I have LOTS of things that are on a "deadline" in the next couple of days, but I wanted to share that a very dear long-time friend of mine and I were talking earlier this week, and we were talking about our lives, the younger years, and so forth. As I began to kind of "catch her up" on some things I really have never spoke about much, as far as how my "home life" was, I have an extremely controlling Dad, and I love him, and always will, and miss him even after 10 years since he passed away... but in many ways he, "stifled" me from "being ALL I wanted to BE"... his age, the times he was brought up in, his "views" on women, as far as college, careers... and as we talked, my friend said something that
inspired me about my 3rd book! 

I do NEED to tell my "story" about my life, even during my much younger years... especially as a teenager, and how much I was "kept" from doing all the things that the other kids in High School were doing.... he was more than overprotective"... and in many ways, it truly has "molded" my adult life at times... and it is a integral part of my life, and all that I've endured.... even the abuse later from an Ex-Husband (not my present one, Jim has never hurt me as far as abuse), but my daughters Father... anyway... all of that and more is a story that I should tell... for I am sure many others have dealt with the same things, yet they may not speak of it either... so I do have a NEW DIRECTION, AND A NEW VOICE, whispering me to make some additions, and/or changes where my 3rd book shall go... I think it will be something that many will want to read... Thank YOU, and you know who you are... I am so grateful that you have became once again a very dear friend.... whom I trust, and I admire...

The New Addition to our family - "my new fur-baby" Dennis!

 

 

Wanted to share a few pics of the new “fur-kid” addition Dennis, and Bub’s! I got Dennis yesterday evening, and brought him home for a “weekend trial”… but it appears they are already best friends… that is the most I’ve seen Bub’s play in a very long time! I think “if Mommy” me, can keep up with the both of them, I have my “Christmas puppy”….


Latest Addition of My Newspaper "All Things Autoimmune" - great article from pain, Lupus, and so much more!

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

 

 A latest Pic of Rhia!!!!

Much other things going on... but I must run out for a bit... PLEASE keep an eye out thought... I have an EXTREMELY important post for everyone that I will put up later today or tomorrow!