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

WISHING YOU AND YOURS A VERY HAPPY, SAFE, HEALTHY AND PROSPEROUS NEW YEAR! MAY 2016 BRING PEACE, HOPE, FAITH, AND LOVE TO OUR NATION AND TO OUR WORLD!!! MY HOPE IS FOR ALL OF US WHO HAVE SUFFERED THROUGH SO MUCH FROM PAIN AND ILLNESSES, TO LOSS OF LOVED ONES, HOMES, MOTHER'S NATURE'S WRATH AT TIMES, AND MORE... MAY WE FIND A RENEWED PLACE IN OUR LIVES FOR THE COMING YEAR. LET'S PUT 2015 BEHIND AND LOOK FORWARD TO SOMETHING THAT SHALL BE SO MUCH BETTER, FULL AND OVERFLOWING WITH GOODNESS, AND LOVE...

RHIA

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....

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

NEW PAIN PUMP IN AND WILL POST MORE LATER....

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...

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... 

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

http://www.fox4news.com/news/63566813-story

http://www.fox4news.com/news/63566813-story#.Vn_yWudKxXw.facebook

Eight dead in N. TX after Sat. tornado outbreak

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....

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

 

 

 

Merry Christmas and Happy Holidays... A Few Pics of me and my New Pup Peanuts!

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

https://www.youtube.com/watch?v=op_tfo1PPAU

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:


http://www.regulations.gov/#!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. "

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