HELPING A DEAR FRIEND TO FIND A PAIN DOCTOR IN THE SEATTLE, WA - AREA... PLEASE LET US KNOW...

Jim in Washington State is having a very, very DIFFICULT TIME finding a "good and non-quack Pain Specialist.... He is at his wits end, and just cannot find one who will even prescribe his Baclofen, and meds such as that!...much less any of the narcotic meds he needs now after the accident!!!! 

IF ANYONE has ANY IDEAS, suggestions, doctors, someone they may know in the Seattle Area, PLEASE SEND HIM A MESSAGE AND LET HIM KNOW !!!!!! I Know he is about at the end of his rope like many of us, and Seattle USED to be the "better" place for this type of thing not worse... maybe even across the pass over in the towns across and to the East, or down towards Portland... 

he is living in a very small country town out kind of South East a ways from Seattle... so even if it were out in that direction it would be okay, and in fact better!!!!! I told him I would try and think of something myself, or someone else he could see etc... but things are nuts in the realms of pain doctors, as so many of us know!!!! But, please send him a message if you do know of any type of information that may help him....

hugs, Rhia his FB page is James Sheffer so just send him a private message and let him know if you can think of anything....

Dealing with Eldery Parents who have Alzheimer's or Dementia, when you, yourself are dealing with Chronic Pain and Illness...

 posted this on my FB page, and I will put it here also... I will be doing some work on my blog, my book, my new newspaper I have began, as well as some other things around my home, and some thinking about life... and how to deal with some really tough issues.... I maybe "away" from FB for a couple of days. 


There are some things I really need to get to working on as far as this new newspaper I am staring. I can customize is a great deal and it could really help me with my blog, as well as with my books , and my next book...plus lots of my advocacy work...getting information out there that would really benefit many people and help make what I want to happen possible ( I Hope)...I have also had some new ideas for my 3rd book unfold in my mind over this past couple of weeks, and although I jotted some of it down, I would like to start writing on it, in the beginnings of the book itself.... There are also some "personal matters" that honestly came up this morning, mainly to do with all of this mess with my Mother, and at this moment I am totally at my wits end, I have no clue where to go or what to do, other than leave her alone, and allow her to figure out "all is NOT RIGHT in her world".... she really hurt me earlier... calls me well before she is usually even out of bed, wanting to know "why I had not called or been by"...

well for one I was there two days in a row, just yesterday for one, and besides she is usually never even out of bed until after noon time... anyway, she asked me what I was doing, and then she told me I was a "blabber mouth", and I should NOT be telling my own kids what is going on... well I tried to tell her the kids are NOT stupid, and they "hear and see" and then she says they are never here nor never call so how do they know anything? So, I hung up... well I called back about 30 minutes later, and began to tell her to NEVER call me a "blabber mouth" again... that it for one hurt my feelings, and for two was NOT the truth, so then she began to tell me that losing her credit cards, not being able to work her stove, put her car in gear, not pay a bill correctly, not take her meds correctly, not know why the alarm clock blinked etc "meant nothing" and why do I even "care"... it is in the past... 

and when I said MOM jut yesterday I WENT TO GET YOUR MEDS AND GO TO THE STORE BECAUSE YOU DID NOT FEEL LIKE IT... so it not in the PAST it is right now... and she made some snide remark oh well, when we get there or if we do, we will handle it then... well WE ARE THERE! And she cannot continue to live alone, and if I tell the doctors about the car incident and and a couple of other things, they will tell her she cannot drive NOT live alone! As I told her and "building you a room" takes more than a few days.... she began to tell me I was full of crap, and nothing was wrong with her.... so I hung up with Okay, I will not "bother" you again, I am NOT calling, I will NOT come over there, and "if" you need me, then call, otherwise, I refuse to be hurt and used like a doormat and then laughed at when I told her that her calling me a "blabber mouth" hurt my feelings... and she said "she never even called me this morning"..... 

so, I have LOTS of things I want to do and get done, and I honestly right now am so totally sick and tired of this crap.... that she may wind up in a nursing home, if she does not want to listen to me.... I don't know what else to do.... but I need to get some rest myself, and do some thinking about several things... so if you do not see me here much, I am okay, just "out of touch" for a few days....

The Latest Addition of my New Newspaper that goes out Daily "All Things Autoimmune"

Here is the link:

http://paper.li/ravishingrhia/1438808814

 

Above is the LINK to the Latest Addition of my New Newspaper! This Will be Daily, and I update it sometimes twice in a day or so. It has a GREAT DEAL of the latest information about Lupus, RA, Sjogren's, Chronic Pain, Lumbar, Cervical Spine issues, along with other health information for you to read and use. I had began this kind of as an "experiment" and decided I liked it so well, that I would make this a daily, permanent addition to my blog, and my Facebook, Pinterest, Twitter and other social media informational places. It will have things about new Technology, mostly health but other forms also. I am able to choose what it has in it and "tweak" it for my readers. So, PLEASE use this link where you can put in your email address and "subscribe" to the daily addition. It will send you an update if I do an update, so you can have the latest information.

Bear with me, I am doing a "revised
" look and feel. I've upgraded so I am in a learning curve as to how to do some of the new things I want to do. But, until then I post the link daily in FB, Twitter, IN, and so forth so everyone can find the new paper for the day!

 Here is a "thumbnail" of the top portion of today's paper. This way you have an idea of what it looks like right now...

Honestly, I have been quite pleased with the articles and information it provides. It has made a world of difference on researching the subjects that are important for health issues, technology and how it all effects us....

PLEASE JOIN ME in My DAILY NEWSPAPER "All Things Autoimmune"! News you Can Use for all types of health issues... and more...

MY LATEST ENDEAVOR TO KEEP YOU, MY AUDIENCE, UPDATED ON THE THINGS THAT MATTER TO YOU AND YOUR HEALTH MOST, FROM RA, LUPUS, SJOGREN'S, TO FM, CHRONIC PAIN, AND SO MUCH MORE!

Autoimmune Arthritic Systemic Life Daily – Rhia

Please join my Daily Newspaper that can give you much insight into the latest information of Autoimmune, RA, Lupus, Sjogren's. Chronic Pain, FM and many more health issues, from the latest news, medications, and information YOU can use! I am currently working to really "update" and make it "customized" for YOU, my audience! Thank you, Rhia Steele "All things Autoimmune"

NERVEmber and IPF! Have YOUR Voices Heard about Chronic Pain!

The NERVEmber 2016 committee has been created and the 2016 director is Rachel Smith. *\O/*

We are having our next committee meeting on Thursday, March 19, 2016 at 5pm EASTERN/2pm PACIFIC.

If you are interested in being on the NERVEmber committee please email Rachel at info@powerofpain.org

 

 https://www.facebook.com/nervember/?pnref=story

https://powerofpain.org/ipain-delegates/ 

 

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!

The Latest Daily Addition of my newspaper "All Things Autoimmune".... For Friday morning February 26th....

https://paper.li/ravishingrhia/1438808814#!headlines

The Newest Addition of my Daily Newspaper "All Things Autoimmune" from Chronic Pain and the possibility of Yoga and mindfulness & the Science it, to Green Tea helping Ra (a possibility) a great deal of new information for all of you! Interesting, I drink green tea usually iced especially in the Spring and Summer months, plus I have taken a green tea supplement for years, but more for helping "weight control" due to it's boosting of your digestive system, plus new information from the CDC about about effective the flu vaccine is....


I put my newspaper out daily, and usually I update it and put it out twice daily. The subjects that I usually put out there are things about Lupus, RA, and autoimmune illnesses, BUT, there are also many articles about chronic pain, our environment, about technology, the latest in medical science and its technology and more. So, there is something for everyone in most additions...please check it out and I will post a link daily here for everyone!

Dealing with an Elderly Parent who also appears to have either Demenia or Alzheimer's when YOU are in Chronic Pain and have Chronic Illnesses.....

I took my Mom, (we have not been in almost a year due to both her and I being ill, so this was supposed to be an incredible trip!

Mom has been showing so MANY signs of either Dementia or Alzheimer's now for 2 years or so to me. Yet, the last 6 months have gotten terrible. I could write a book on just what I have been through due to her "diminishing" ability to "think, not be confused, not to almost burn the house down, to not be able to pay her bills, or even read her mail" and the list goes on and on... and remember I AM ALONE NOW, I AM CHRONICALLY ILL WITH SEVERAL AUTOIMMUNE ILLNESSES MYSELF, AND LIVE WITH HORRIBLE CHRONIC PAIN... so to have to also deal with some of these things with her some days is more than I can handle almost...

So, this is a bit about our overnight trip to the Casino at Winstar in OK....

(From Friday evening after getting home)
TOO WORN OUT, TO EXPLAIN all the HELL at the Casino the past two days, but yesterday ALL OF THE MACHINES WERE DOWN MOST OF THE DAY! TODAY MOM LOST ANOTHER credit card! I JUST HAD TO CALL ONE IN LAST WEEK SHE LOST here in town. So, today, she "discovers" she lost another one! Then she misplaced her cane about 10 TIMES at least... other than that, and HORRID nightmare traffic going especially but coming back also ROAD CONSTRUCTION EVERYWHERE!!! But, other that those things all in all, it was a GOOD TWO DAYS!!!! LOL!!! Oh and my kitchen was still standing when I got home. LOL... The pups were in the kitchen with their quilts, food, blankets, toys, water, etc... and actually I still had a house standing.... LOL!!!! More over the weekend, I am totally wiped OUT! But, I came home with only 20.00 LESS THAN what I went with... so I guess that is a good thing .....

(Today Saturday morning I continue)  .......
Those issues, and that we had not really gotten to play much at all on Thursday, (can you imagine how much money the Casino lost?) Their "main server" went down for some weird reason that does everything for all of the slot machines! In fact I sat down and played, and was going to switch machines, and it would not print me a ticket with my money on it... so then I began to notice ALL of the machines were "blinking" and people we saying the same thing I did!!!! So they really had one heck of a mess. And of course the day we decide to go of all times!!!!! I am so totally worn out today thought... Mom "lost" can her cane 5 times. Once I had to go and ask about it. And "lost and found" brought it to me, someone had turned it in... the other times "I" finally found it, once she could try and recall which machines she had been at. It was a nightmare... then when she found out her credit card was GONE... I just went nuts almost. Thank Goodness it was a "credit" card and not a debit card for her checking account. They may have been much worse. I had to get home first, find an old statement of hers, so I could even find where to call to cancel it... and then bring her information home and call them. Then she could not decide to eat at the Casino (we did not eat breakfast at first like usual) and just played thinking we would play an hour or two, then eat and leave. This was like 6:30AM or so... so by about 10AM, even I started getting hungry. The night before she would not even eat down in the Casino like we usually do. She wanted to get something and take it to the room... which was fine with me, but just weird. We went up "early" about 7:00PM to the room, and had gotten some really good fish and fries, much, much more than either of us could eat... we should have ordered just one and split it. So, I turned on the TV and was watching a movie... the next thing I know she is in the bed, with the extra blanket, already asleep by about 8:30PM or so. I could not believe it, and she never woke up at all, and usually she is up and down several times a night.. I finally decided to lay down also, so I changed and got in bed, and I woke up by 5AM on Friday and HOPED the slot machines were okay... But. I was already drinking a cup of coffee, I had made their in the room (which sucks) but I needed something... and was almost dressed by the time she was up moving, ready and packing. Like I said it was just strange everything she did. Heck, when we were going to the Casino, she sat and spent like an hour almost going back and forth through her purse. I thought maybe she lost something... but she was just "confused" I think about everything... then she kept saying we should be there already, and I said YES, if we had not been in stop and go traffic for about 35 or 40 miles or more off and on, we would have been there in about 2 hours... it took almost 3 and a half or more hours to just get there this time! Anyway, I parked and again she began going through her purse, and taking stuff in and out... and I finally asked her Mom have you forgotten something? She just said I cannot get it all organized, and then she had her "Players club card" in her hand, or lap and started saying she "lost it"... I looked down and said Mom it is right there in your lap..... anyway, I knew then it was not going to be a incredibly exciting trip... and one time about 2PM on Thursday, I told her to "SIT" and do NOT move from a certain spot... I was headed to get some tea, and go to the restroom, which was a long ways down, and then I told her I was going to try and check in to the room... so DO NOT MOVE! I get back and she is GONE! So, I thought gosh knows where the hell she is now... so I started looking, and finally spotted her rambling around, and I said WHY DID you MOVE??? She said well you were taking a long time... and I said I TOLD YOU, it is a MILE almost to walk from where we were to the HOTEL to check in! So, yes by the time I got there, got something to drink and went to the restroom it took a while, but why the hell you did not STAY where i said to... and she just looked at me... LOL! Anyway, it was okay and I had a wonderful time JUST BEING AWAY FOR A DAY OR SO AND A NIGHT, from the house, dogs, and just "Life".. BUT, I FEEL Mom will not be going back there again... if we do go to one, we may have to go to one of the smaller ones, who has already grown huge also... but she even said it, I just don't think I can go through this again, OR put YOU through all of it... and I told her Mom, it is fine, I did not mind and We BOTH needed to be away for a day and night... I told her I have my OFF days also... BUT now she really sees what I have been seeing for several years, and really bad the past 6 months... she goes to our PCP on the 22nd, and I am going to have a huge discussion with him... this is not just "old age", this is definitely more than that... I just PRAY it is not Alzheimer's.... Dementia is severe and bad enough, but the other, I watched my Grandfather go through that, and I surely do NOT want anyone to have to deal with Alzheimer's it is a horrid illness for sure..

#TheRealRD Rheumatoid Arthritis Rare Remission - Daily Pain and Suffering

#TheRealRD #7 - Remission is Rare and Daily Suffering Is NOT!


As I read over the 7 ideas that the #TheRealRD asked for bloggers to blog about for RA Awareness Day, which is on February 2nd, and also happens to be Groundhog Day, and was my Dads Birthday, yet he passed away 10 years ago.

Ive come to know and understand the true chances of myself, and thousands of others out there like me, who suffer from this Autoimmune Illness, have MUCH pain, sometimes daily, and we KNOW all too often no amount of medications our Rheumatologists give us, the pain, the stiffness, the swelling, the lack of use of that particular part of your body like your hands and wrists become a severe problem. Take someone like myself that is a published author, and avid blogger, trying to set at the computer daily, for often hours at a time, if you intend on keeping a blog up to date, and writing a 3rd book, I must be at the computer.

Yet, daily pain keeps me from making my goals, that I had set even two years ago. So, when I saw this opportunity to write a blog post in honor of February 2nd, RA Awareness Day, by the Rheumatoid Patient Foundation (RFP), I am thrilled for the opportunity.

Honestly, and I am sure many of us could write about all seven of the topics. I have been through so many different medications and combinations, that either did not work, or caused severe other health problems, mainly all types of infections. I feel we do NOT have nearly enough research funds to get to the root of this hideous life altering disease. I also know so MANY others may not know that RA can effect all different types of organs in the body, from the heart, causing the heart attack number to DOUBLE for those with RA. It effects the joints, and usually many joints. Feet, toes, fingers, wrists, thumbs, the spine, the liver, lungs... It is a systemic disease, of which can harm any and/or various other vital organs of the body.

The daily pain is what many do not often understand though. Those who do not know the treatments, may not realize just because we are on medications, that does not mean, that all that often the pain subsides. I spoke with a member of my Rheumatologist staff two weeks ago, and when I explained to her the amount of pain I live with was high on the 1 to 10 score, she looked at me and said that is NOT Acceptable! No one should live most of their daily lives in that much pain!

After speaking with her it dawned on me that I DO accept an unacceptable amount of pain most days of my life. I have gotten to the place I think this is just how it is, I WILL have to just LEARN to ACCEPT that on a scale from 1 to 10, pain at an average of 4 will have to do, which is so WRONG! A level daily of 4 for most people not used to chronic pain would be excruciating! And it is not right for me to have to deal with ongoing pain of that magnitude day in and day out, yet what do I, or WE do about it?

I have a great Pain Management Doctor, who has implanted my pain pump, and will up the dosage as I need it, plus he gives me oral medication for breakthrough pain. Yet, I feel that is part of the problem. I have TOO MUCH breakthrough pain, on almost a daily basis.

MANY of US as Chronic Pain Patients, whether from RA, Lupus, other bone and joint problems, spine and back issues, severe nerve pain in different regions of the body, for many reasons, from diabetic nerve pain, to nerve pain and other types of chronic pain, that even our doctors do not know WHY it is there or sometimes even HOW to treat it properly - we are told that WE MUST LEARN TO COPE with a CERTAIN AMOUNT OF PAIN! It is not that I do not agree with that, I do. NO MEDICATION will take away ALL of the pain. YET, with the proper treatments, diagnosis, sometimes surgeries, some combination of medications, certain types of exercise, some diet changes, and some natural types of therapy pain can be diminished much better. IT IS FINDING that right combination of all of those or part of those things that can give us that type of relief, BUT it make take weeks, months, even years to get that all adjusted and working. There is NO ONE treatment, or magic pill, to just take and chronic pain subside for good.

All too often I feel that RA is a very misunderstood disease. Even though we have LOADS of information about medications, ads on the television, and in magazines, I feel that as a society those that are not patients, caretakers, or close to someone with this horrid disease do not fully understand what it can do. It as not as simple as taking an NSAID over the counter, or even taking one medication that is a prescription. At times, some of us DO fine the correct medication, or combination of medications and find relief. Yet, those that do, are far and few between.

I have been through an entire gamut of all types of medications for RA and Lupus. In fact, I just saw my NP from my Rheumatologists office 2 weeks ago. As we spoke about my pain, the daily swelling, stiffness, I am losing more of my grip in both hands, the weakness, losing the ability to do everyday things, buttoning a shirt, or even zipping a zipper... I have watched my body especially my hands, wrists, fingers, thumbs are very bad, feet, ankles and now my spine begin to degenerate even more than ever before due to RA.  She made a remark that upset me when she said, that I had tried all kinds of medications and none of them seem to work. What upset me about it so much, it was like she was blaming ME for medications not working! Some of them caused too high of infections in me. I had double pneumonia at least twice, then had cellulitis in both thighs, that then turned into double abscesses, that took 4 or 5  MONTHS to get well. I had to make a weekly trip 35 miles ONE WAY for weeks and weeks to a Wound Care Specialist in order to HEAL those abscesses! It delayed me in having a cervical neck surgery I needed badly, as well as my internal pain pump had a permanent motor stall, and I needed surgery to replace it! But not one surgeon would touch me until those abscesses were basically well, and I was free of infection.

So I spent months without most of my RA medications, plus a couple of months without my pain pump working, and suffered endless weeks of having to have wounds the size of a silver dollar and as deep as half my thumb getting debrided until they finally got well. Our pain is NOT just as simple as from a joint. It is not as simple as taking one pill. There are so many medications, yet like myself, daily, I am in pain. Especially for the 1st few hours of the morning. As joints start to be effected MORE by this disease, then the pain can become almost unbearable, and at times, even in my lumbar spine, I have enough degeneration from this hideous illness, that it hurts so badly, I cannot even sit to type, to write, or often not be able to have the quality of life I so want to have.

Honestly, I cannot recall unless maybe a very rare occurrence that I have read or heard one person tell me, I am in remission, and I have finally no pain from Rheumatoid Arthritis. I do not believe the cases are out there, and if they are, very, very rarely do they happen.

When I saw the article about raising awareness on February 2nd by the Rheumatoid Patient Foundation, and that I could participate, and tell my feelings on 1 of 7 subjects, I wanted to tell my feelings, and story, because awareness is something we so desperately need so much more of.

#TheRealRD

You too can learn so much more at ...

www.rheum4us.org

Monday Mornings Latest Addition of All Things Autoimmune from Lupus, Chronic Pain, the Environment, and much more!

Monday Mornings Latest Addition of All Things Autoimmune from Lupus, Chronic Pain, the Environment, and much more!


https://paper.li/ravishingrhia/1438808814#!headlines

Autoimmune Arthritic Systemic Life Daily – Rhia

 

 

 

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

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!!!!

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!!!!!

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

 

 

 

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. "

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!

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

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

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

Posted on December 11, 2015 in Consumer, Pain Medication, Government with 11 Comments

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

"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)