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

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!

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!

 

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