Thursday, December 31, 2015

Stevie Nicks - My Idol, My "Name Sake", My Muse.... what an Incredible Woman... and I love all of her songs... yet this one fits right now so well.....

Have You Forgotten....Me.... by Stevie Nicks my Idol, my "namesake"... my Muse....

You've left me now and its seasoned my soul
and with every step you take
I watch another part of you go

I continue to build the wall
You were so strong I fell to my knees
and I don't think I can handle this at all

Well, one more night I'd like to lie and hold you
(yes, and feel...)
to make you smile, I'd like to be there for you
have you

and the days go by
doin' nothin about them
how much time
will i have to spare

my mind won't rest, and I don't sleep
not even in my dreams
if you ever did believe for my sake
if you ever did believe

and the days go by
doin' nothin' about them
how much time will I have to spare

and the days go by
doin' nothin' about them
how much time will I have to spare

well, one more night I'd like to lie and hold you
(yes, and feel...)
to make you smile, I'd like to be there for you
have you

baby don't leave me
baby don't leave me
baby don't leave me
im down on my knee

Wednesday, December 30, 2015

Petition and Comments of the Docket from the CDC on Pain Medications - we need your COMMENTS AND SIGNATURES!

This is a Petition in the Government Petition organization and we have over 20,000 letters and signatures on this one....

As this Petition is titled our doctors have been sworn to "Do No Harm" and if WE as True Pain patients cannot get our medications due to these ridiculous guidelines, then our doctors are going against the "Oath" they took to be physicians!

The DOCKET located here :!docketBrowser;rpp=25;po=0;dct=PS;D=CDC-2015-0112;refD=CDC-2015-0112-0001 

Has 1,300 COMMENTS but we need 13,000 or 20,000 COMMENTS!!! Please go in and take a few moments to comment and to sign the petition, you can do it anonymously if you wish... we have until January 13th... so be sure to get those in by then... it will close and then will will not be able to comment, and if you can't do it online, there is an address you can mail your comments to directly!

A Happy New year as we Welcome in 2016 - and New Pain pump is now in



p.s. New Pain pump is new... surgery went well... I am hurting like hell today, but I am okay... have a call in to my doctor before he also is out for the holidays to check to see about my medications orally until I see him after the 1st of the year next week, when he will up the meds back closer to what I was used to....

Tuesday, December 29, 2015

UPDATE - On New Pain Pump Surgery and what is to come....


A quick post to let everyone know I am home, actually got home by about 11:15AM or so, and how I am doing. I know some friends and family maybe concerned, and I am kind of "out of it" so I wanted to post here so everyone knows I am doing good.... I am so thrilled that a dear friend of mine, who was pregnant with her daughter the same time I was with mine, took me and brought me home. She has has several back surgeries herself, so she knows all too well, about all of this.... I am very thankful that she did that for me.... :)

I am actually home already and all went fine. They had a bit of a mix-up not having the medication there at the outpatient center that he fills the pump with. But, my old pump had quite a bit in it, at least until I see him on the 7th. The did NOT turn up the pain meds in the pump like I thought they would, and that is probably for one due to the correct medications to refill it completely, and then I think he wanted to see how I do for now. I still have more oral med I can take if I need them, and I already knew I came home after a 30 mile ride back, had to take one of them... but they had me in and out so quickly again I am still feeling the anesthesia medications in me... so they are keeping me on the sofa at least today to see how all goes... and to get some rest like I know they wanted me to... so I am not staying on here, just wanted to post quickly to let you know and some of my family and so forth I am home safe and sound... and all seems to have went well...

Monday, December 28, 2015

Pain Pump Replacement in the wee hours of tomorrow morning,..

IN October 2010 I had the original pain pump put in, which should have lasted 7 years or more... and here we are 5 years and its been in "stall" for months.... LOTS of things have happened between 2012 to 2015... some good, some horrible... and some I am so fed up in dealing with... I am SICK OF BEING SICK, I AM SICK OF SURGERIES, DOCTORS, HOSPITALS, TEST, LAB WORK, MEDS AFTER MEDS... Does it EVER END??? or at least get somewhat better... For some reason I am having one of these "diassociative" realms, where I feel I am here but not here... I've had this a couple of times in the past about 4 years, especially when there is just too much to deal with... and I think that is where I am at... I want this surgery, and the other at least one in my cervical spine taken care of... and I want some kind of freaking normal to exist... Sometimes I guess maybe that is too much to ask for... so my friend Carrie is picking me up at 4:30 AM and I have to be at the outpatient surgery center to check in at 5:30AM I HOPE that means I am "first up" and can get in and get out.... and we don't have to spend a whole lot of time up there, but they will intubate me, and put me under completely due to the type of surgery it is... so keep me in your thoughts and prayers, along with my Mom, who is totally worried, and Jim... and my kids... plus Carrie please prayer that she is able to drive and be safe.... she has also back issues badly, having several surgeries herself... so I am sure this will not be pleasant for her either... I shall post when I can... 

Now here I am facing yet another surgery, and two after this one if my neck and lower back don't improve... 

Sunday, December 27, 2015

Garland and Rowlett went through horrid weather last night, 11 confirmed dead in these tornado's

Just unbelievable for this time of year, and then to right now have 11 people dead from these storms, no one would have ever suspected this kind of chaos and this much severity of weather for this time of the year! 


 Provided by Bass Pro Shops in the Garland Area from last night....

Saturday, December 26, 2015

Chronic Pain Medications, Narcotics, the CDC, Public Comments and More information I feel you need to read...

I have to say, that some of this is very true! I do know just from speaking with my pain specialist, that there are many programs all doctors can attend, that are free, and it gives them the knowledge to give patients with chronic pain issues, the proper diagnosis, and then the proper treatments, including medications if needed. 

But WE will NEVER see a CHANGE unless WE as a NATION, as a COMMUNITY, come together as ONE, and demand THINGS CHANGE! I've learned a great deal from my pain doctor about things such as Medicare Advantage Plans, Medicare itself, why many doctors have issues taking some of those policies, or even Medicare... it took my own pain doctor over 2 YEARS and then he had to go in front of a judge JUST TO GET PAIN FOR 2 SURGERIES! Doctors do NOT have time, and they cannot possibly run a practice if they have to wait YEARS to get paid for a procedure... My pain pump surgery alone will be somewhere around 30,000.00 or so... Just the pump in itself, is extremely expensive... 

so if I doctor does a few of those, and then has to wait YEARS to get paid??? They can't possibly stay in business like that. Plus I have heard some doctors admit, one reason they do not give out pain medications is because they feel they are not "trained" enough... our newer physicians ARE now being trained in chronic pain, Lupus, RA, autoimmune illnesses, and that is a good thing. ALL physicians should know about these diseases, and about chronic pain... So, I believe that the CDC has some to do with it, but then I feel "Congress" and the likes also have their fingers in it, along with our "insurance, Medicare" and so forth... and the fact that WE have to stop Hiding our heads in the sand, and STAND UP AND TELL OUR STORIES!!!! It is totally imperative that WE STAND TOGETHER and make our voices heard. 

We have some great organizations out there, the US Pain Foundation​, Power of Pain Foundation just to name two of them, but they also NEED US to HELP them get the word out... that is the ONLY way we as patients, caretakers, family and friends, will get the treatments we need, under the right circumstances, and not have our physicians "frightened" to prescribe the medications their patients need.... many of us cannot AFFORD a "specialist".... And even Finding a "good Pain Doctor" is NOT EASY! 

Can you imagine walking into a "Pain Management Doctor's Office" that ALSO IS A TEACHING UNIVERSITY, to find out THEY do NOT "prescribe" pain medications, but they send a 'RECOMMENDATION" TO THE patients PCP to give them the medications??? now how stupid is that!!! Talk about nuts! Then WHY call themselves a PAIN MANAGEMENT CLINIC???? This just happened last week to a friend of mine, and I know of a doctor here, that is a "pain doctor" but he got "reprimanded" so he can prescribe "some medications" but nothing that would be "narcotic" in nature... so you go in, thinking you will get the help you need... and then find out he can give out other medications, BUT he cannot prescribe any type of narcotic, even though he tells you that is what you need!

Don’t Blame CDC for Poor Pain Care — Pain News Network




Thursday, December 24, 2015

How Music Can Bring you to atop the mountain , knock you down upon your knees

Can't help but post this one again.... it is just too amazing for words... It still brings me to my knees when I hear it... I am such a music lover, and have been all my life... and music, much like poetry and writing, the "poetry" of lyrics can stir up so many emotions... good, bad, heart warming, heart breaking... but our "hearts" as strong as they beat... when the "heart of love" has to give way, to watch the person walk out the door... our hearts are glass and they definitely "break and shatter like glass"... I "stepped" out of listening to music for a bit of time... and wondered why... well, "life"... getting so caught up in life, and not remembering to "listen" not to just the music, but to the lyrics that "speak" to our shattered and battered hearts... Love is one of those things that "never leave"... those memories are always there, no matter if it is a week, a month, or years... just like a ghost "love" follows with all it gave to us... None of us are "beyond" suffering... whether it is suffering from a broken heart, or the loss of someone dear to you, or remembering "how things used to be"... or the physical realms of illness and chronic pain so many of us go through... I think that is why I find it so crucial for ALL of us to "make our marks" to the government does not realize... that THEY, or SOMEONE THEY LOVE, Could also be "broken" or in pain, or a chronic illness suddenly plagues their lives... not one of us here on Earth are capable of "not hurting"... in one way or the other... we have those who "pretend" at times things go wrong, and it does not matter, BUT it does... no amount of MONEY can "fix" a broken heart.... there are not enough years in a lifetime to make that type of pain "mend"... I said this BEFORE the Trial that would were "prohibited" to talk about until it was over... THERE WAS NO AMOUNT OF MONEY THOSE PEOPLE THAT OWN THAT BUSINESS, AND THAT TRUCK DRIVER, THEIR INSURANCE AND SO FORTH, THAT WILL "REPAIR" OUR SOULS, CAN fix many things that are physically, mentally and emotionally... yes, I won't say that we "did not need the money".... of course we NEEDED it... Gosh it was one of the only things that Jim had hopefully coming in to help get with doctors, medications and all of the PT he needs to continue... Fortunately, as I "predicted" I guess you could say, that fateful night they brought him in after a 9 HOUR surgery on his mid spine, he "wiggled" his big toe, just enough I saw it... from that moment, no one could tell me he would never walk again, or never be able to work again... I knew at that moment that in the heavens, "Jim's job here was not done"... and that he would walk, maybe with a cane, but not be wheelchair all the time, and I knew he would play the guitar again, thus he is and also writing lyrics again... which we both LOVE to do together, along with playing music....And all of that had came through...And he is able to do "some work" again, but his "temporary" memory is what he has issues with... but again I feel time will also make that better...
I cannot "predict" why we "lost" the lawsuit... I have given my "thoughts" on it, and feel the Paid off people and also lied on the witness stand... but I have no "proof" just a gut feeling... yet, what goes around comes around... thus I have to do nothing, one day... they will "pay" in some form or fashion, if they did in fact "lie" and pay off people to lie...
As mere humans, we never know what tomorrow holds, yet the prior years, we shall always "retain" in our hearts... I do feel "broken" and although I am trying to NOT been a "grinch" I am a bit agitated about the holidays... Yet I know I am not the only one... so many people that are friends, are going through such a horrible time right now... so if I can remain "healthy" enough to get through the pain pump surgery on Tuesday 29th, and then get my neck surgery, and my lumbar surgery, I think unless something else "breaks" my pain would be more manageable.
New poem below... needs some work, but wanted to post it...

Though There are Miles between us....
Where is that sweetness that found us years ago...
Neither of us expected such a loss or to feel so low.
How can two lovers combine & make plans for a future?
Within the blink of an eye feel as if all we live in is torture.
I won't take "we are over" for an answer after 13 years..
I still feel that fire burning, & I feel you do, yet we have fears...
Yet, stare up in the sky tonight and see the full moon beaming..
Now we can take those small "pieces" of heart with seaming...
Thousands of miles and many states between...
Never shall "rob" two lovers, who souls endless, "Us" a Team.
As sure as my heart beats, I pray the "distance" between us shall be gone...
Where those words we spoke to one another shall be what moves us along..
By Rhia Steele 12/24/2015

Break On Me... by Keith Urban
There'll be days your heart don't wanna beat
You pray more than you breathe
And you just wanna fall to pieces
And nights, those 2 AM calls
Where dreams become walls
And you just need a break
Break on me
Shatter like glass
Come apart in my hands
Take as long as it takes, girl
Break on me
Put your head on my chest
Let me help you forget
When your heart needs to break
Just break on me
There'll be times when someone you know
Becomes someone you knew
But you'd do anything to change it
And words you wanna take back
But you know you can't
When the page just won't turn
And it still hurts
Break on me
Shatter like glass
Come apart in my hands
Take as long as it takes, girl
Break on me
Put your head on my chest
Let me help you forget
When your heart needs to break
Just break on me
Oh, when you need somebody
When you need somebody right now
You're where I'll be
Break on me
Shatter like glass
Come apart in my hands
Take as long as it takes, girl
Break on me
Put your head on my chest
Let me help you forget
When your heart needs to break
Just break on me
Break on me
Break on me, baby

Wednesday, December 23, 2015

From My home to Yours May Your Heart be Filled with Hope, Faith, Joy, Comfort, & Overflowing as the "Angels" Surround You....

May the Spirit of this Wondrous Season Bring you Hope, Faith, Joy, and Peace that shall pass all understanding. I wish you a safe journey if you are traveling, much joy with family and friends, and for those, like myself, "celebrating" more or less alone, also know that there are those out there who do love and care... 

May the Angels Surround you and Bring to you the Cup of Faith that shall run over, and give to you all of the Tidings and Mysteries, of Christmas Cheer and Magic...

Love, Rhia



PLEASE REMEBER to Put Your Personal Stories and Comments in - THE CDC NEEDS TO know how we feel! This can have a dramatic effect on our lives in the future!

The link below will take you to the docket and to where you can comment. As of this morning there are 500 comments, and we need more like 5,000 or 50,000!!! I know there are MANY, MANY MORE out there that have not commented yet on this vital and important subject. PLEASE take a few minutes and go to put your comments in.

I know we are busy with the holidays, but this could truly effect the rest of our lives and holidays in the future!

I saw many "names" I recognized, and also you can be "anonymous" if you prefer. Whatever you do, get your comments in no later than January 13th, which is not far away.

By the way, the link works, not sure why this "sign" comes up as far as the link:!documentDetail;D=CDC-2015-0112-0001

Here is my comment and gosh I could have written 4 times this much!

Here is my "comment":

"First of all I want to Thank the CDC for allowing "us" as patients, along with physicians, caretakers, and those who see what chronic daily pain does to people's lives. Even in my 20's, and 30's, due to severe migraines, although trying to work, raise two children, go to college at night, and do everything in life that needed to be done, I found myself in the emergency room once, twice, even three times a month. I missed days of work, that led even after being employed for 6 years or more, to me either resigning due to the severity of pain, nausea, and all that went along with migraines, other than being fired. As time went on, in my mid 30's my joints literally began to fall apart. I had knee pain, neck pain,shoulder pain, elbows, hips, and went through surgeries trying to rid my body of pain, so I could have "a life". Back then women stood as being "stressed, having hormone problems, have anxiety" when we went in complaining of "pain". I went through every type of treatment, from injections into the back of my occipital nerves, to chiropracter's, to every type of a specialist, even being hospitalized with special treatments, yet nothing helped. My Internal Doctor would give me "some" pain medication at times, but never really enough to help me with the severe pain. By the time I was 35 multiple joints had been through surgery, I had a hysterectomy, and I knew even back then "they" the medical professionals were "missing" something. I ate properly, I exercised daily, I kept my weight down, I "appeared" healthy, but the pain continued. At 40 years old, I had my 1st heart attack. Out of the blue, no "symptoms", just on the 8th day of January 2001, I took myself to the ER, a drive of 20 plus miles to the ER, and I was having a heart attack. I was told that if I did not get away from the "abuse" at the time that I had been enduring, either the "ex" would kill me, one way or the other. So, I left my home & moved to Seattle WA. I spent 6 years there, "getting well". In 2003, I began to have severe pain everywhere. I was seeing a pain doctor, who was giving me a very tiny dose of pain medication, again but not anything that was enough to help me to try and "live" with a quality of life. I was so ill, I had no choice but to resign my job, and file for my complete disability. I could no longer work, any type of job I was trained for, under as much pain as I was in. I had been told by a PCP at the time, he felt I had some autoimmune problems, & should see a Rheumatologist. With no insurance, no salary, it took also almost 3 years and 2 appeals to get my complete disability, when I did go in front of a disability judge. By this time, I lost my Dad, & was my Mom's only child, & had to move back to TX. After many surgeries, knee replacements, shoulder replacement, elbow surgeries, back and neck pain, my PCP did some extensive blood work and I had Lupus, RA, Sjogren's and Raynaud's. Which all explained the deterioration of my joints, connective tissues, my spine "giving way" (I also have osteoporosis in the most severe of forms), yet still I fought to find a pain specialist, someone who could take care of the pain problems, that had plagued my life for 40 years, and that meant medications. We "fixed" what could be fixed, but some things are just going to cause chronic daily pain, and the only way for me to have any quality of life, is the medications, that are of course opioid in nature, narcotics. They are the only things that "helps" me to get the "edge" off the pain, so I can have somewhat of a normal and decent quality of life. I have never had a "high" off of them, not even wanted one. All I want it to try and have enough pain control, that I can try and enjoy what time I have left, after 55 years of living with so much severe pain. And no they cannot "fix" or completely rid anyone of all pain. But, they can give enough relief so you can deal with what pain is there for the most part. It infuriates me to be "lumped" into those who "choose to abuse". The people that either steal medications, or "quacks" that cause us as legitimate pain patients, to feel like we are "addicts", which we are NOT! If I could throw away all medications now, and not have pain, I would be happy to. Even after all I have endured, I came down with abscesses from my "Rheumatoid Arthritis" medications, so those had to be stopped. I need two new surgeries, due to degenerative disease in my cervical and lumbar spine again. My story and journey through this is so long, that I am writing a 3rd book about my own nightmare of pain, of not be treated when I should be, not getting the medications I needed, and the horrible time I see so many others having, all of their stories much like mine. I am an Ambassador for the Arthritis Foundation, an advocate, doing activist work, all for autoimmune, chronic pain, heart disease, trying to get new medications, new treatments, a way to change the "Faces of Pain" forever. We can and need to move mountains. "

Tuesday, December 22, 2015

New Poem - A Long Time since my "Voice" visited me....

I knew in a few days after first writing this, I would "change it".... some of what I wanted to say, didn't come out the way I really wanted it to... so this morning I "heard" my "voice" calling, thus I made some changes. Still I feel like all of those incredible poems, all of the wondrous writing I did for so many years, is still a "faded memory".... and that frightens me... All I've ever held onto, no matter what is my ability to tell my heart, and speak how I feel through the "written word"... again all of that seemed to walk out the door about 8 months ago or more... so again I try.... and hope one day those "words" that used to ring so vibrantly shall do that once again...
I've not really "written a word in I am not sure how long...
I felt I no longer held the "words" to say, and my "voice" left me also, on that May 2015 Day. So, this is the first poem I have written in a very long time... not sure that it is "right' yet... but wanted to post it
not even sure about the title yet either but here it is....

Two Hearts Intertwined In A Stained Glass Hue...

One fateful morning April, 2005,
Two came together, to be united as one.
Vows written, and saying "I Do!
Feeling I was a princess, & my Prince finally came true....
We vowed to each other to softly combine...
We stood in the soft hew of stained glass in "sync" a perfect time.
We talked of our future,
All of our plans, hopes and dreams..
Knowing that never would life, pull us apart at the seams.
Suddenly you turn around and it is years, not just a day.
Time captured some memories, all along the way
To the top of that mountain to show we never feared.
Life's crazy "schemes", throws a curve ball straight to the heart.
We vowed each day forward, life would never burst us apart...
Even with as much love as was here,my race never to be won.
Two heart combined together, beating only as one...
Two pieces held together by one, torn from whole into two.
And the only was to "fix" it, is the memory of that stained glass hue...
Rhia Steele copyright December 2015

Monday, December 21, 2015

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

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!

Friday, December 18, 2015

Life, Pain, Lots of "Stuff" and living with "what we are given".....

Got Mom through the lumbar ESI injections early this morning in Dallas.... 3 different places, and hoping her back pain improves... our Pain Specialist seems to think they will help a good deal...

My "surgery" for the new pain pump (replacement) is on December 29th!!! One heck of a way to end 2015...

My severe pain, in my shoulder blades, down in my elbows, and even into my wrists and thumbs, NOT my other surgeries, thank goodness... BUT, I need another cervical neck disc replacement... I believe he said C-4 ?? is 80% COLLAPSED and has to be fixed...

Good news, the abscesses, one gone all the way, the other about 90% closed also... :)

Bad news the pain is horrible... and I still need the lumbar/sacral back surgery also... ALL of course postponed for at least 4 months now due to the cellulitis/abscesses on both top thighs....

Got the puppy, got his 2nd boosters... and got my hair cut, that was yesterday! I love it, or I will in about a week, once it grows out just a tiny bit... then it is really better, than when 1st cut... and it is SHORT!

Holidays, well suck... my kids will be not around... busy, plus my daughter 8 hours away or so...

And I've had an EXTREMELY ROUGH WEEK, EMOTIONALLY... I AM SURE DUE TO MANY THINGS, AND THE HOLIDAYS, after losing my Tazzy who was an Xmas present 12 or so years ago... plus Jim not here and in Seattle...

Just so much going on, and by the time I "think" I may have time to write or do something else different, something else happens, like I had to put a new flapper in Mom's toliet this week, in among everything else....

Seen some awesome Christmas Movies, I love Hallmark Channel... and other movies as well... the "Coat of Many Colors" about Dolly Parton's young years, was amazing!

So, here is a new pic of me....

 Happy Holidays to All - May we have Peace, Comfort, Joy, Hope and Faith throughout the rest of 2015 and into 2016 - to Eternity!

Tuesday, December 15, 2015

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...!docketBrowser;rpp=25;po=0;dct=N%252BFR%252BPR%252BO;D=CDC-2015-0112


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"....

Monday, December 14, 2015

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!!docketBrowser;rpp=25;po=0;dct=N%252BFR%252BPR%252BO;D=CDC-2015-0112

Saturday, December 12, 2015


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

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

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 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

Friday, December 11, 2015

"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)

Wednesday, December 9, 2015

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.


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"....

Saturday, December 5, 2015

Fed Panel Opposes CDC Opioid Guidelines — Pain News Network - I shall add more to this post.. but this is CRITICAL FOR ALL OF US TO STAND UP FOR OUR RIGHTS AS PAIN PATIENTS!

Fed Panel Opposes CDC Opioid Guidelines — Pain News Network

PLEASE READ THIS article, and be sure to also send it out on Social Media and everyone you can... we must fight this nonsense.... if we sit around and "allow" this mess, MANY of us will DIE from "intractable pain".... it can cause a heart attack, and all types of other "deadly" issues if someone must try and cope in severe, daily pain day after day with NO help from medications and so forth! This is INSANITY as it's most INSANE!!!!

Friday, December 4, 2015

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!!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!


Tuesday, December 1, 2015

TODAY IS THE DAY! #GIVINGTUESDAY IS HERE.... HOW WILL YOU MAKE A DIFFERENCE? Your gift from the "heart" is the best "gift" YOU may receive of All!

The one day our entire "world" is in unity to "give" to those around us... whether you give of your time, monetary gifts, helping someone, giving blood, any and all kinds of ways to give of yourself, or of your time....

Here is some information about #GIVINGTUESDAY! And some ideas about the ways YOU can make a difference!



These are but a few ways YOU can give! Even if there is something not listed, or a special place you would like to support, do that... this is the one day to give as your heart tells you. I've found that giving of yourself can be the very best "gift" of all!