"Through my heart's work of writing, I share with you my complex journey a top the mountain, sliding down, crawling up, & living through the realms of Autoimmune Arthritic Illnesses. Taming "The Wolf" Thru each Day... One Step at a Time … Together We Are Learning to Survive. Please follow along, to New Beginnings - looking Thru the Window Pane of Pain in life where we shall find our journey leading us to - New Perspectives
Showing posts with label opioids. Show all posts
Showing posts with label opioids. Show all posts
Sunday, August 6, 2017
Thursday, July 6, 2017
The CDC, and others in GOVERNMENT do not KNOW WHAT TRUE SEVERE DAILY CHRONIC PAIN IS LIKE FOR MANY OF US WHO ARE TRUE PATIENTS!!!!!
I am so INFURIATED at the NEWS as well as the CDC, government, and THOSE WHO SO STRONGLY OPPOSE ANYONE NEEDING PRESCRIPTION PAIN MEDICATIONS, that I HAD to get up and turn the channel a bit ago!!! I had turned my computer off earlier in the day due to severe "dry lightening and thunderstorms" BUT AFTER DINNER, I came to turn it back on and state my MIND ABOUT THIS BULL!!! I would LOVE to take ANY ONE of the people from the CDC, from the GOVERNMENT, FROM JUST PLAIN OLD OFF THE STREET folks, AND ALLOW THEM TO HAVE ALL OF MY OWN PAIN, PLUS MANY others PAIN for just ONE WEEK, WITHOUT MEDICATIONS!!!! I don't care how much you "punish" those who need the meds, and there is NOTHING ELSE that helps, THEY WILL FIND SOME WAY, SOME HOW TO GET "HIGH"... whether it is ALCOHOL, OFF THE STREET DRUGS, THAT LORD KNOWS WHAT IS IN THEM, INCLUDING HEROIN, Or anything else they can "use" to get what "WE" the NEED THE MEDS DO NOT GET AND THAT IS SOME KIND OF "HIGH" from them! Other than when I was in my teens and early 20's for sure, AND I COULD NOT GET RELIEF FROM ALMOST 2 OR 3 TIMES A WEEK SEVERE MIGRAINES, that SENT ME TO THE ER MORE TIMES THAN I CARE TO COUNT, and AT THAT TIME, for a while, I felt "something" that was kind of like giving someone an "I don't give a damned" drink, or medication that they may not take very often then YES, you may feel that "high" for a few moments, BUT those LIKE MYSELF, WHO HAVE MULTIPLE ILLNESSES, THAT CAUSE DAILY SOMETIMES SO SEVERE PAIN, THAT MEDICATIONS EVEN DO NOT GET RID OF IT ALL, WE DON'T OR I SHALL SAY I DON'T HAVE A "HIGH" FROM IT! I would GLADLY throw away ALL OF MY MEDS, If somewhere there was a "MIRACULOUS" CURE FOR lupus, RA, DDD, DJD, OSTEOPOROSIS CAUSED BY PREDNISONE, WHICH IS A NECESSARY EVIL, NOT AN OPIOIDS, BUT CAUSES MORE DAMAGE WHICH LED TO MY HIP FRACTURE.... If I could take NSAIDS, or anything else to relieve my pain, I would do it in a "New York minute"... BUT you TAKE AWAY PAIN MEDICATIONS FROM LEGITIMATE PATIENTS, and you will see MORE ALCOHOLISM, THOSE THAT CANNOT WORK, CANNOT TAKE CARE OF THEIR FAMILIES, ARE IN THE ER, HOSPITAL, AND TAKING ILLICIT MEDS THAT LORD KNOWS WHAT THEY CONTAIN... You will see a DRAMATIC RISE IN SUICIDES,, those that LIKE MYSELF, WITH A HEART PROBLEM, IF I WAS IN SO MUCH PAIN, WITHOUT MY MEDS, I WOULD PROBABLY NOT LIVE 6 MONTHS, THE REST OF MY BODY, INCLUDING MY HEART, would NOT be able to take the pain!!! It is a strain not just "where it hurts" but all over, and it effects you mind, the rest of your body and your soul, spirit and takes away all quality of life! One cannot raise their kids, work, or even there would be DAYS, WEEKS, MONTHS SOME WOULD BE COMPLETELY BEDRIDDEN, without RELIEF!!!!! I am SO SICK of BEING PUT IN A STEW POT, AND MIXED IN WITH THOSE WHO "CHOOSE TO ABUSE".... NOT ALL OF US ARE "ADDICTS... I don't take ANY of my medications, NONE FOR SOME KIND OF "ESCAPE OR HIGH" OR WHATEVER those that abuse get... IN FACT, I've NEVER HAD ILLICIT MEDICATIONS, other than at about the age of 23, I smoked a "bit of weed" and I HATED THE FEELING IT GAVE ME, same way with DRINKING ALCOHOL, I don't like the way I feel or that "loss of control" it causes... of course many of us as younger crowds years ago, may have drank too much, or experimented with "not legal things" yet most of my generation did not even know about "illegal drugs" in high school. It was not something MANY OF US HEARD ABOUT OR ESPECIALLY HAD ANYWAY WE WERE AROUND THAT TYPE OF THING".... I fully intend, on when I "SETTLE DOWN" TO GIVE THE CDC, THE GOVERNMENT, BOTH STATE AND FEDERAL, and ANYONE ELSE, a "PIECE OF MY MIND" ABOUT this bull.... you take a couple of states, with doctors who are NOT real doctors, or have "backwards" folks that use everything else also WITH prescriptions, and they with or without those meds would either wind up in the ER overdosed, or would find a way to get what they want, off the internet. or cross borders, IF THEY CHOOSE THAT LIFE, THEN NOTHING ANY ONE ELSE DOES WILL STOP THEM! I AGREE with 'regulation" somewhat, but most CREDIBLE DOCTORS, will NOT cause "harm" to their patients! By any type of medication, etc.... so yes kick out the "bad seeds" but leave those who truly are chronically in daily pain (HELL they were even stating some "SEVERE CANCER PATIENTS" MAY NOT NEED PAIN MEDICATIONS! ... WELL, some may NOT, but I would 'ASSUME" many would never go through chemo, radiation, and continue to want to live if their disease brought them intense, severe, and daily pain!!!!! I am sorry if I OFFEND ANYONE" But I am really perturbed on this subject!
Saturday, May 14, 2016
Opioid Addiction Is a Huge Problem, but Pain Prescriptions Are Not the Cause
More Information about how Congress and others are talking about...
http://blogs.scientificamerican.com/mind-guest-blog/opioid-addiction-is-a-huge-problem-but-pain-prescriptions-are-not-the-cause/
Friday, April 29, 2016
Thursday, March 17, 2016
Still Just PEEVED over this mess about Pain Medications and the CDC! WE are ALL NOT ADDICTS OR ABUSERS!!
I am just so TOTALLY PEEVED at the CDC and ALL that they present when it comes to Pain Medications, especially "opioids" I want to SCREAM! YES, there are those who choose to abuse... but that abuse is FAR NOT what has been in the main stream of the news, and from the CDC! Right now, and I know many that suffer from all types of severe chronic pain daily... if WE including myself, had any OTHER CHOICE, and did NOT have to have these medications in order to have a better quality of life, you can BET WE WOULD CHOOSE SOMETHING ELSE! Many, MANY OF US, have lived through YEARS AND YEARS OF HELL! We have been through the many tests, all of the other medications, we do "exercise", we do try and go on with our lives, we DO ABIDE BY OUR DOCTORS RULES AND REGULATIONS, we DO everything we are supposed to do OR NOT SUPPOSED TO DO, in order to try and not have to take pain medications YET FOR SOME OF US, THEY ARE OUR SAVING GRACE! They are what allows us to get up in the mornings, and go on about our days the best we know how, whether that is work (and even with my medications I had to stop working in 2003, and spent until 2007 getting my disability! Durong that time I SURVIVED barely, with very little medication, BUT I was too ill to work, too ill to really do much of anything, I had lost hope, and was about at the end of my own rope, until I FINALLY FOUND MY pain specialist who tried to put my life back on a tract of being able to "live"... DO THEY TAKE AWAY ALL PAIN? NO! NOTHING, but the day we LEAVE THIS PLACE AND MOVE ONTO WHEREVER WE GO FROM HERE, will ALL OF OUR PAIN BE GONE! BUT, can we "take it", can we "live with it", can we do things with our families, some of us still work, do advocacy work, be useful in our society, in our neighborhoods, churches, with our loved ones, and try to enjoy life as much as possible...
YES! I realize that without all of the other surgeries, PLUS more ahead, my pain would only get worse... so even though due to my heart problems, and other illnesses, I take a chance, I DO have surgery IF my doctors tell me they have a chance to "lessen" "new pain" that comes when you have degeneration of joints, of your spine, when things happen you have NO control over, that can cause further pain, you DO what you CAN to NOT have to take any more medications... after all any of us can only take so much medication, no matter what type it is... and any medication works only as well as your physical, emotional and mental state allows it to...
BUT WITHOUT MY pain medications, I would NOT be able to take care of my aging Mom, who is 81 and now suffering from probably Alzheimer's or some type of Dementia. I could not do my laundry, take care of my house as much as I can, try and cook for myself, take care of bills, and do my very best to go on with my life as I do... I just posted that this WEEK HAS BEEN HELL! Pain due to weather change, time change, and just me having to do more that usual this week brought on more pain....
BUT, I still try and get up, move forward, some day more slowly than others, but try my best to take ALL OF MY MEDICATIONS AND LIVE LIFE! SO, WHEN I read and hear about the CDC, and all of those WHO HAVE NO CLUE WHAT LIFE IS LIKE... AND WHAT IT WOULD NOT BE LIKE, IF I WERE NOT ABLE TO have my medications, IT REALLY MAKES MY BLOOD BOIL! I can GUARANTEE YOU IF ONE OF THEM, OR ONE OF THEIR LOVED ONES, SUFFERED THE SEVERITY OF PAIN that some of us do, or WOULD WITHOUT OUR MEDICATIONS, they WOULD ALSO BE FIGHTING THE GOOD FIGHT TO TELL THEIR STORIES, AND make sure they OR THEIR LOVED ONES WERE ABLE TO GET THE PROPER TREATMENTS AND MEDICATIONS THAT THEY NEEDED IN ORDER TO NOT SUFFER DAILY! My hopes are that ALL OF US THAT UNDERSTAND THIS PASS THIS AROUND, WE TELL OUR STORIES, WE CONTINUE TO FIGHT AGAINST THIS MESS OF OUR STIGMA WE ARE ALL "ADDICTED"... WHICH IS BULL.. I never feel "high", I feel relief, relief enough that I can go on with my day.... and if you see me WITHOUT MY MEDICATIONS, you would see someone who was in so much pain, that walking across my little home would be horrible, AND WHEN I have my medications, I am able to try and move on with my life.....
http://nationalpainreport.com/cdc-opioid-guidelines-released-8829808.html
I hope YOU TOO will stand up and tell your story! WE must stand together on this!
YES! I realize that without all of the other surgeries, PLUS more ahead, my pain would only get worse... so even though due to my heart problems, and other illnesses, I take a chance, I DO have surgery IF my doctors tell me they have a chance to "lessen" "new pain" that comes when you have degeneration of joints, of your spine, when things happen you have NO control over, that can cause further pain, you DO what you CAN to NOT have to take any more medications... after all any of us can only take so much medication, no matter what type it is... and any medication works only as well as your physical, emotional and mental state allows it to...
BUT WITHOUT MY pain medications, I would NOT be able to take care of my aging Mom, who is 81 and now suffering from probably Alzheimer's or some type of Dementia. I could not do my laundry, take care of my house as much as I can, try and cook for myself, take care of bills, and do my very best to go on with my life as I do... I just posted that this WEEK HAS BEEN HELL! Pain due to weather change, time change, and just me having to do more that usual this week brought on more pain....
BUT, I still try and get up, move forward, some day more slowly than others, but try my best to take ALL OF MY MEDICATIONS AND LIVE LIFE! SO, WHEN I read and hear about the CDC, and all of those WHO HAVE NO CLUE WHAT LIFE IS LIKE... AND WHAT IT WOULD NOT BE LIKE, IF I WERE NOT ABLE TO have my medications, IT REALLY MAKES MY BLOOD BOIL! I can GUARANTEE YOU IF ONE OF THEM, OR ONE OF THEIR LOVED ONES, SUFFERED THE SEVERITY OF PAIN that some of us do, or WOULD WITHOUT OUR MEDICATIONS, they WOULD ALSO BE FIGHTING THE GOOD FIGHT TO TELL THEIR STORIES, AND make sure they OR THEIR LOVED ONES WERE ABLE TO GET THE PROPER TREATMENTS AND MEDICATIONS THAT THEY NEEDED IN ORDER TO NOT SUFFER DAILY! My hopes are that ALL OF US THAT UNDERSTAND THIS PASS THIS AROUND, WE TELL OUR STORIES, WE CONTINUE TO FIGHT AGAINST THIS MESS OF OUR STIGMA WE ARE ALL "ADDICTED"... WHICH IS BULL.. I never feel "high", I feel relief, relief enough that I can go on with my day.... and if you see me WITHOUT MY MEDICATIONS, you would see someone who was in so much pain, that walking across my little home would be horrible, AND WHEN I have my medications, I am able to try and move on with my life.....
http://nationalpainreport.com/cdc-opioid-guidelines-released-8829808.html
I hope YOU TOO will stand up and tell your story! WE must stand together on this!
Wednesday, January 13, 2016
TODAY IS THE FINAL DAY FOR COMMENTS ON CDC GUIDELINES FOR PAIN MEDICATIONS! PLEASE GET YOUR COMMENTS IN!!!!!
http://www.regulations.gov/#!docketBrowser;rpp=25;po=0;dct=PS;D=CDC-2015-0112
ABOVE IS THE LINK TO GO AND COMMENT ON THE CDC GUIDELINES THAT CAN EFFECT THOUSANDS OF PEOPLE, POSSIBLY MILLIONS OF CHRONIC PAIN PATIENTS AROUND THIS NATION!
TODAY IS THE LAST DAY TO VOICE YOUR CONCERNS, COMMENTS AND SO FORTH! PLEASE TAKE A FEW MOMENTS AND DO THAT. YOU CAN REMAIN ANONYMOUS, AND DO NOT HAVE TO PUT YOUR NAME IN...
THIS IS OUR TIME TO TRULY SPEAK UP FOR ALL OF US WITH HORRID PAIN ISSUES, AND KEEP THE GOVERNMENT FROM TELLING GOOD PHYSICIANS HOW AND HOW THEY CANNOT TREAT THEIR PATIENTS!
I GOT A NEW "PATIENT" INFORMATION PAGE LAST WEEK AT MY PAIN SPECIALIST! IT WAS A NEW WAY THAT I KNOW THE "GOVERNMENT" MADE THEM WORD, THAT YOU MUST KEEP YOUR MEDICATIONS IN A LOCK BOX, BUT YOU SHOULD TAKE A PHOTO OF YOU AND YOUR LOCK BOX TOGETHER AND TAKE IT INTO YOUR PHYSICIAN!!!
NOW I TOTALLY AGREE WITH LOCKING UP MEDICATIONS.... THAT IS AWESOME, AND I FEEL EVERYONE SHOULD, BUT FOR THE GOVERNMENT TO MAKE PATIENTS BUY A SAFE, AND THEN TO HAVE TAKE A PHOTO IN FRONT OF IT, AND GET IT TO YOUR PAIN DOCTORS, IS JUST GOING A BIT FAR. I HAVE NO PROBLEM AS FAR AS ME WITH IT, BUT I KNOW MANY OUT THERE, THAT CANNOT AFFORD A LOCK BOX OR SAFE....
SO PLEASE PUT IN YOUR THOUGHTS......
AS OF NOW THERE ARE 3,825 OR SO COMMENTS, WE REALLY NEEDED 3 OR 4 TIMES THAT MANY AT LEAST!!!!
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!
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 |
Wednesday, December 23, 2015
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. "
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...
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"....
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"....
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.
http://www.regulations.gov/#!docketBrowser;rpp=25;po=0;dct=N%252BFR%252BPR%252BO;D=CDC-2015-0112
Saturday, December 12, 2015
CDC OPENS COMMENTS From the PUBLIC ABOUT OPIOID MEDICATIONS AND CHRONIC PAIN!!!!! PLEASE READ AND GET YOUR COMMENTS IN! WE HAVE A VOICE!!!!
http://nationalpainreport.com/cdc-re-opens-door-for-public-comment-on-opioid-prescribing-guideline-amid-scrutiny-and-criticism-8828673.html
Under mounting criticism from patients, physicians and industry, the
Centers for Disease Control and Prevention (CDC) announced it has
opened a second period for public comment on its Guidelines for Prescribing Opioids for Chronic Pain, the agency made public in a notice in the Federal Register.
CDC’s draft guidelines will be available on Monday, December 14, 2015, at http://www.Regulations.gov for review and comment. The public comment period opens December 14, 2015 and closes January 13, 2016.
see the link about with the rest of the information!!!!!
Here is another link about this that came out this morning!
Will CDC Start Listening to Chronic Pain Patients? — Pain News Network
CDC Re-Opens Door for Public Comment on Opioid Prescribing Guideline Amid Scrutiny and Criticism
CDC’s draft guidelines will be available on Monday, December 14, 2015, at http://www.Regulations.gov for review and comment. The public comment period opens December 14, 2015 and closes January 13, 2016.
see the link about with the rest of the information!!!!!
Here is another link about this that came out this morning!
Will CDC Start Listening to Chronic Pain Patients? — Pain News Network
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!!!!
Wednesday, May 27, 2015
Prescription Pain Medications and Legitimate Patients Once Again Could face issues... we MUST stand up for OUR RIGHTS!
Again, as you can see, those of us who ARE chronic pain patients and we DO take our Medications PROPERLY and we keep them SAFE, LOCKED UP, and take them ONLY AS DIRECTED, following all of the "pain doctors" orders to a "t" so we do NOT abuse our medications, nor are we the ones using them for "recreational" use, or to do something illegal with them. SO, the "FEW" the DO NOT use them correctly, OR they sell them, or overtake them, or get them from numerous doctors and so on, cause US the very people the medications are for, to SUFFER!!! It is already DIFFICULT ENOUGH to get into a GOOD pain doctor that DOES prescribe pain medications. Then when you do, never would you try and do anything to jeopardize that "contract" between you and your physician!!!! WE MUST stand UP for OURSELVES!!! Or once again, we will be in a place that we may have suffer needlessly due to the few that do wrong. This has to be talked about, taken seriously, and we are the ones, the PATIENTS that must fight for our rights as being able to do "our lives like I do my own.... So, each of you, that are in the same situation, I would love to hear from you, and see what you have to say about this ever changing issue... it sucks that a few, can cause harm to so many.
http://nationalpainreport.com/the-prescription-drug-abuse-caucus-what-does-it-mean-to-chronic-pain-sufferers-8826244.html
http://nationalpainreport.com/the-prescription-drug-abuse-caucus-what-does-it-mean-to-chronic-pain-sufferers-8826244.html
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