The "News" and how they TWIST INFORMATION THAT HARMS PAIN PATIENTS AND OTHERS!!!!!

I got SO PISSED AT THE NEWS LAST NIGHT, I COULD HAVE SPIT!!!

They started NOW on the "Non-Profit" Pain Organizations taking "kickbacks" as "donations" from some of the big "Pharma" companies that make the heavy narcotic pain meds... BUT RATHER THAN TELL IT LIKE IT IS, THEY "PIECED" TOGETHER what "they" wanted to make it mean, I was so mad I wanted to jerk Lester Holt through the TV and slap him LOL....

it is stupid, it would be NO different than a Pharmaceutical company that makes "cancer" meds, or "diabetes" meds giving money to non-profits... to help "educate" patients, to give information out to assist patients about medications etc that DOES NOT MEAN A NON-PROFIT IS "GIVING PRAISE" ETC to "any one" drug company, it means that they could be "working" together for a common goal, to help legitimate patients get the treatment they need, and keep it out of the hands of those who use it illegally, sell it and so forth...

then to top it off, they said there is "one doctor" who gave out "1,000" pain pills in a day!!! WELL, THINK ABOUT IT, IF A PAIN SPECIALIST SEES 25 PATIENTS A DAY OR WHATEVER, some having procedures, some having surgeries, many on different meds, and they see 10 PATIENTS IN A DAY, THAT NEED REFILLS FOR 30 DAYS OF MEDICATION... if a patient take 1 PILL every 6 HOURS a day, that is 4 pills a day times 30 DAYS IN A MONTH, THAT IS 120 PILLS ... WELL IF 10 PATIENTS NEED REFILLS THAT IS 1200 PILLS BUT IT IS FOR 10 PATIENTS FOR 30 DAY SUPPLIES!!!!!! NOT 1200 PILLS ALL AT ONCE FOR ONE PATIENT!!!! OMG! I was SO PISSED, IT IS RIDICULOUS THAT THE NEWS PIECES TOGETHER WHAT GIVES THEM RATINGS! and harms others!!!!!

No matter what the subject is now days, the news takes it tosses it like a salad and then comes up with how they want it to sound for their own gain!!!! THAT IS why I don't believe much of anything they say now days, and in fact rarely really "listen" or watch the news channels!!! They are the ones that bring forth some of the issues in society we have today. Their very "way" of twisting "their truths" to suit their own status and ratings.... People should be standing up and hey we will not put up with, listen to, nor watch the garbage you guys spew out anymore!!!!

National Pain Report and President Obama Speaking Up for Those in "Real Pain"

This is exactly the type of support we need! Great News and Thank you President Obama for addressing that our pain is "REAL"!

Please spread this link on to everyone you can. We NEED support like this to fight back against those who don't believe our pain is "real" and that we "need" our medications to be able to have some type of normal in our lives!

http://nationalpainreport.com/op-ed-obama-gets-it-right-on-opioid-access-8829657.html 

 Thank YOU President Obama for your words about this devastating illness often "invisible" yet very REAL!

Pain News Network Articles and Information

NO "Epidemic" of Overdoses.... see the article below... great example and reasoning...


http://www.painnewsnetwork.org/stories/2015/6/12/there-is-no-epidemic-of-painkiller-overdoses#.Vp5PM_Y_Lh8.facebook=

here is another article from The Pain News Network talking about "urine tests"... and I agree they add 100's of dollars to a patients bill, and many of the times patients take them, due to metabolism, or NOT DOING the correct TEST (which I know for a fact had happened to a friend of mine) those "pee" tests can be NOT right! I usually wonder why the hell they bother giving me one... my pain pump gives me medications all the time, I take pain pills along with the medication in the pump, plus muscle relaxers, diazepam.... and so forth. I certainly do not NEED anything else, and would not dare even drink since now the pump is in (new new one and running) and I am almost back up to my dose before it had a motor stall. So, I know they check to make sure you are "taking" the medications... and of course if you have other substances that should NOT be in your system... the "reasons" somewhat make sense... BUT as I said, there are some of these medications that WILL NOT SHOW properly if they don't do a "special" test at the lab they are sent to. I can relate to the story in another article about the young woman who "fears" her appts at her pain doctor's. It used to be that way for me... and still is at times... we have such a horrible time getting the medication that goes into my pump.. and it is NOT expensive... that is the weird thing... it is actually much less expensive that most oral medications. But, you always go in with the fear that you won't get your medications, or something has changed (like now my pain doctor has a new rule you must have your medications in a "lock box" or safe" ) Which is a very good idea, if you have anyone else in your home... or have company over etc. But, I am not sure where a man standing in the waiting room got this idea, but he was asking about the lock box, and he was under the impression he needed to have his wife take a photo of her and the lock box and bring to the doctors office for her chart... I did NOT read it like that... but did understand the doctors are trying to get the CDC off their backs, so they TELL patients that, so patients are more aware of "protecting" their medications. NOT leaving them out for anyone else to get hold of... and keeping them in a safe place, especially as I said, if you have others in your home or people that visit, it is a good idea to lock your meds up. One time years back, I had a medication that was a nasal spray for migraines. I had picked up a brand new bottle from the pharmacy, but it was one of those HOT TX SUMMER days... and I guess I did it at lunch time and left it in my car by accident when I went back to work... Well the entire bottle, "siphoned" it's way out of the container, and into the other bottle it was in... plus it was such a tiny amount of liquid it has almost already vaporized by that evening when I got home... I had mortal HELL getting a replacement. I mean it was evident, when I took the bottle in and showed my doctor, then the pharmacist what had happened... but believe me, after that, I was much more careful about where I left my medications. I am so diligent about where my scripts go, that I take them to the pharmacy immediately, and if I don't need them that day, have them on hold for when I do... that way, I don't misplace it and have hell... no matter whether a pain medication or whatever type of medication it is... I try to turn those scripts in immediately. Plus my pain medications are from a specialty pharmacy... so I don't do anything but request my meds when they are due from my doctor, and they take care of the rest. There are times though that they "delay" getting the script to the pharmacy, and I am on pins and needles, if I happen to be running low of meds... so I totally relate to sometimes being "fearful" of seeing your pain specialist...


http://www.painnewsnetwork.org/stories?category=Opinion

Above is a link to another article "Why I am Afraid of going to my Pain Doctor Appts"


http://www.painnewsnetwork.org/stories/2015/9/20/cdc-opioid-guidelines-would-institutionalize-malpractice#at_pco=smlrebh-1.0&at_si=569e5754f5ee1daa&at_ab=per-2&at_pos=0&at_tot=5

EXETREMELY IMPORTANT CDC TO HAVE A CALL TOMORROW NIGHT THE 7TH AN THE PUBLIC CAN LISTEN IN ON THE ISSUES OF OPIOIDS & NARCOTIC PRESCRIPTIONS!!!!

EXTREMELY IMPORTANT YOU GUYS AND GALS!!!!! WE ARE ALLOWED (THE PUBLIC) TO LISTEN IN ON THIS CONFERENCE CALL TOMORROW EVENING!!!!! BE SURE TO READ ABOUT THIS AND PASS ON!

 

PLEASE pass THIS ON TO ANY AND EVERYONE YOU FEEL WILL BE INTERESTED!!!!!!!

http://nationalpainreport.com/cdc-to-host-public-conference-call-on-controversial-guidelines-for-prescribing-opioids-for-chronic-pain-8829092.html


This is from the National Pain Report and is in my latest addition of my newspaper that comes out daily, "All Things Autoimmune".... PLEASE PARTICIPATE or Let others know if you can.... this is such a crucial issue right now... we need every opportunity to get our "words" in about the seriousness of "true pain patients" and how it can destroy their qualify of lives without the proper medications!!!!!

January 13, 2016 DEADLINE FOR YOUR COMMENTS ON THE CDC AND PAIN MEDICATIONS AND CONTROLS...

I know I sound like a BROKEN RECORD!


But, it s IMPERATIVE WE get our comments in on this CDC Docket about Crhonic Pain Medications, and how they want to "tell what doctors" can and cannot prescribe and when.... PLEASE GO IN TAKE A MOMENT TO COMMENT, RIGHT NOW THERE ARE ONLY 1803 COMMENTS... WE NEED MORE LIKE 18,000!!!

YOU DO NOT HAVE TO GIVE YOUR NAME IF YOU DO NOT WANT TO and still post your comments.... there are many physicians that are also posting because THEY want to TAKE CARE of Their Patients and not have the CDC breathing down their necks about what they "can" and "Cannot" do as far as patients go...

The DEADLINE IS JANUARY 13, 2016!!! So Time is of the essence.... PLEASE TAKE A MOMENT TO COMMENT!!!! Rhia

The Link is:

http://www.regulations.gov/#!docketBrowser;rpp=25;po=0;dct=PS;D=CDC-2015-0112;refD=CDC-2015-0112-0001

 

 

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"....

September 2015 "National Pain Awareness Month" right around the corner and "Beautify in Blue Campaign" by the US Pain Foundation

I will go ahead and mention that I got our Mayor here in my Hometown to sign a "Proclamation" for September 2015 being National Pain Awareness Month! The US Pain Foundation is "hosting" a "Beautify in Blue" Campaign to bring awareness into our towns and cities. Ennis has allowed me to be a part of this event for September. I am not sure all of what my package will be from the Foundation, but I will have signs, posters, ribbons and so forth to put up around town. So, I am thrilled to be able to do something and give our town a look at just how chronic pain can "control" your life, and just how many right here in town suffer from all types of illnesses that also have chronic pain issues in tandem. Even one of the gentleman that does okay these types of projects told me he suffers from Migraines. It is amazing when you speak out about some of the chronic illnesses and pain here in your own "backyard" so to speak, how many others are also suffering too. I have two cousins, both suffering from RA, even before I was diagnosed. In fact my 1st cousin Mike, who just lost his Mom to stomach cancer (my Mom's sister and my Aunt of course) just had hip replacement, this is his 2nd replacement - (two weeks ago), he had his other hip done, about the time I was having one of my knee replacements done probably in 2008 or so. I have had "so many" and in 2007. I believe I went through about 7 surgeries or more on joints, so the dates sometimes become a blur. But, I know others that I run into in the market of Wally World and so on, that also have issues, some of them like my neighbors across the street, the Mom, and both sisters all have diabetes. I believe their Dad also suffered from it. In fact the youngest sister, and she was maybe in her 40's passed away about a year ago after fighting diabetes. She had already been on dialysis. The Mom has also been on dialysis now for several years. She "shattered" a knee not too long ago and spent weeks in the hospital and in rehab, but due to her illness, and the dialysis and age, they would not do surgery on the knee. I don't think the doctors feel she could make it through the surgery. She is sometimes so weak, they have a difficult time just getting her to dialysis. It is just sad to see what the entire family is enduring. The son, is just an incredible man. I don't think he has been "plagued" with diabetes yet. But, he also has two strikes against him on both sides of the family. You don't see it as much in men, especially the type they have, but with the family history, he certainly could succumb to it.

After all of the advocacy I do for Autoimmune Illnesses, Lupus, RA, Sjogren's, and also Arthritis the AI kind, as well as osteoarthritis, along with Cancer and Heart Disease, sometimes the issues of Chronic Pain kind of take a "back seat" in my activist roles. 

So, since Chronic Pain, which of course I know all too well, from my own personal and up close experience with it now for many years, well before the Autoimmune Issues were diagnosed, I suffered from such horrific Migraines that I was sick with them sometimes several times a month, for many years throughout the time I was about 17 years old, until about the age of 45 or so. 

They became so bad at times, that I had to resign jobs, that I had been in for years at a time. It became such a burden, yet back then there were not many answers as far as migraines went. They had very few medications, most of them of course narcotic pain medication, and even back then, the doctors were so leery about giving them. But, if I did not have my prescriptions, it never failed I wound up in the Emergency Room so many times, and even that for one got OLD very quickly, and for TWO, of course the ER doctors began to think of course I was after the "drugs" rather than having Migraines so bad. 

So, oddly enough, once the diagnosis of the autoimmune illnesses were made, and I finally found after years and years of suffering by then all types of chronic pain issues, an awesome Pain Management doctor, who has been taking care of me now for at least 8 years maybe more... and he even put in my internal pain pump in 2010. 

My migraines seemed to have calmed down, even before the pain pump. and began to change. I began to have "Lupus Migraines"... and an injection of corticosteroids, along with a step down pack for 7 to 14 days, was the only thing that helped those.


But, my chronic pain became more complicated due to all of the severe joint issues, of which some I have had surgery and others still bother me with chronic pain, which is a part of many AI illnesses.

So, I felt compelled to now do some advocacy work in the realms of Chronic Pain.

Thus my reason for helping out with National Pain Awareness Month, and the Beautify in Blue Campaign. I hope to be able to help educate others about Chronic Pain, and just how badly it can also effect your quality of life.