Showing posts with label "DO No Harm". Show all posts
Showing posts with label "DO No Harm". Show all posts

Wednesday, August 23, 2017

Letter from the Arthritis Foundation to Paul Ryan Speaker of the House and Congress!




Friday, July 21, 2017

The 50-State Network Health Advocacy, Creaky Joints, The Global Healthy Living Foundation and "Patient Counsil" that are at the heart of these Arthritic Illnesses & "Chronic Pain" Foundations

I've been a "member" and follower of "Creaky Joints", and "Arthritis Power" plus following Seth Ginsberg for a very long time. He began his venture of these websites, due to his own struggle with pain and arthritic illness that began very early in his life.

I've always admired his tenacity, and the way he gives each of us, the patients a "VOICE' about our own Pain problems and Arthritis health problems, and there are many. I can definitely attest to the MANY types of Chronic Pain, that myself and MANY of us have to try and deal with daily. Which includes trying to get to the proper doctors, get the medications we need, get insurance to pay for the help we need, all the while also fighting "Congress" on the Federal and State Levels, so we can continue to get the "Best Healthcare" for "Chronic Pain" possible. I believe that many people that have not experienced health conditions such as Rheumatoid Arthritis, Osteoarthritis, Juvenile RA, along with several other "arthritic" conditions, don't get the "horrid" pain all too often patients live with. Of course, pain, is not the only factor that effects every part of ones life. We often live with stiffness, joint swelling, mobility issues, medications that cause some "harmful" effects, such as corticosteroids. Like my PCP says to me, Prednisone is a "necessary evil" for me. Yet, I already was predestined to have osteoporosis, thus with my body frame being small, the medications, along with RA and Lupus, have me at the "severe" range of osteoporosis. This simply means, THAT is more than likely why my hip fractured after the fall I took in December last year. If I had not had osteoporosis, I may have came out with just a very bruised thigh and hip. Yet, it was fractured in two places. Also, those of us with this dreadful disease also run the risk of "not enough bone" to have surgery on. I have ran into that one with my neck. After this 2nd surgery, now I face "not enough vertebral bone" to even "repair" anymore. So, this 3 level surgery I had in April HAS TO WORK, as my Orthopedic Surgeon put it. If not, then I run the high chance of having a "totally fused" neck, where I could not look UP or down... or move my head very much side to side.

I had a very informative "phone conversation" with several of the people from the  50 State Network and the Patient Counsel all a spin off by Seth, as well as The Global Healthy Living Foundation this afternoon. I feel very privileged to be a part of these foundations. I hope to help further educate patients, doctors, find ways to get bills passed at the State and Federal Levels of government, along with other ways in which they help patients, there families, and close friends and help to pave the way for more guidelines on several extremely important topics that effect many of us, from "biosimilars", to "all ways" that patients are effected by health insurance or lack of, medications, finding doctors that can help, and ways to cope with the red tape involved when you are chronically ill,

Most that know me, know my own personal journey through the pitfalls, the times of doubt and sorrow, and the sometimes triumphs over these diseases. All too often patients like myself, have "several" pain problems, not just one. Which makes our life a living hell at times. We fight for treatments, medications, insurance that pays, along with every step we take. When you are chronically ill and/or in pain, it's difficult enough just to get out the bed each morning, much less take the stresses of finding proper care, proper medications, trying to get insurance to pay, and now fighting the government so we continue to be able to get the care we need on ALL LEVELS.

The 50-State Network Patient Network, along with Creaky Joints, and The Global Healthy Living Foundation are helping to get our governmental bodies "on board".  I am also now a member of the "Patient Counsil", and will update you more as I move forward in my own venture and learning about everything. They provide a great deal of information for patients, as well as those who are playing other "active roles" in these foundations Rather that taking away what we need to survive and try to thrive through all of the days of outrageous pain, we are out there fighting for not just ourselves but ALL CHRONIC PAIN PATIENTS, LOVED ONES, FAMILY, JOBS AND MORE!

I am hoping to become more active in a role with the 50-State Network, already involved in Creaky Joints, and to learn more about the Global Healthy Living Foundation. As the days go by and I learn more, I will definitely keep you posted, on how you can contribute. In the meantime, all of the links are below, so YOU can go to the sites an find out more also.

By the way when I was reading through the documentation from "Creaky Joints" one "phrase" really stuck out to me. Of course much of it is brilliant and so helpful to patients, caretakers, families and close friends. We've all heard the phrase "Do No Harm" which is of course the main "vow" of physicians. One of the things they pointed out though was that does not "just mean" physical harm, but mental and even "financial". I felt that really "struck" a nerve with me. With the very high cost of surgeries, and the ones I've had are always over the $100,000.00 dollar range... yet, unless you really "ask" for help, either for a payment plan, or "financial aid" of some type, often you are NOT offered it. I've found out there is NO SHAME in calling a health care provider, especially with a huge "bill" from surgery etc. and asking for some type of help. Often if you "pay it all" at once, they will give you a percentage off the bill, or like myself, on this "Bone Stimulator" that I was not told runs $5,000.00 AND ONLY LASTS ABOUT 6 MONTHS, and is NOT reusable for future surgeries. So, my part was going to be over $600.00, and that is just a "drop" in the bucket of bills, from hospitals, doctors, the Ambulance, ER, Anesthesiologists, Radiology, and so forth. I called and found out that I "qualified" for complete "assistance" for the entire 600.00. Yet, if I had not "asked" they never would have "offered" for sure. Just on portion of what we deal with on so many levels, with any chronic illness. 

Also, those of you who deal with the stresses of "Arthritic" illnesses may want to check out the app "Arthritis Power". The details are at the URL listed below... and you can also get it at the "App" Store at or on Google Play.

Please visit the sites, and see just how incredible these places are along with seeing how YOU the PATIENT can be on board also, to fight the "good fight" for all!


Monday, February 6, 2017

"Information" I heard from a friend, that I thought I would "share" BUT I am NOT saying this is true... about our Governor of Texas.

I found out an interesting fact about our Texas Governor. I guess I've been so busy and really not into much of what is happening here, there and yonder, that I also know why I didn't know that he is in a wheelchair, and has been after a tree fell on him years and years ago. After a friend of mine telling me about it, I went to his website, and to his Facebook page and noticed they never show many of his photo's where he would have to be "standing" and even the ones sitting down, usually you can't tell he is in a wheelchair. 

Now, I have not found out about this for sure, but I do know of course for a long while after the accident, of course he was on pain medications. I will not say for sure, but I gathered he probably still suffers pain from that injury due to arthritis, and of course something such as that, the older you get it tends to give you issues with stiffness, pain, and as I said arthritic issues. 

I say this because as I said I have not read it with my own eyes, but he has in his own way "taken up" for those of us with chronic pain that must take prescription medications. Us that truly are under a legitimate physician's care, and taking our meds as we should. Anyway, I waited a couple of days before putting this here, as I surely DO NOT want anyone to think I am saying it for sure. As I said, this came from a friend, and as far as reading he "said" anything for sure, I have not came across it, BUT we also know for the most part WE CANNOT TRUST OUR NEWS anymore. They will "say" and "tell us" what THEY can get headlines, and "sensationalize" stories for their own monetary and ratings gain. Thus with all of the "negative" crap about pain medications on the news everywhere now, they probably would NOT come out and say something knowing how they are. It may "hurt" their ratings or piss some of their "ties" to who know what off.... Rhia

The things I shared about the tree falling on him etc. is true. You can read about that online and the story about how it all came about.

But, as far as this about pain medications, I am NOT stating that I saw it, read it, etc... I have tried to look a bit, but not that it really matters, although having "someone" on our side, that KNOWS what we deal with as far as chronic pain, would be a nice change, other than being put down for "being dope heads" or "addicts" or that we are a bunch of "liars" and so forth.

As I said I am NOT happy with the news, any of it.. I don't believe half of what I read or see, because they want those ratings, and those millions of viewers, and all of the revenue from commercials etc. 

I just thought it was a bit interesting, and IF someone does KNOW of where there is an article or something that Governor Abbott did say, I would like to know about it. 

Saturday, May 28, 2016

Home Care for the Elderly, Hospice, Choices that are difficult to make for all of us with elderly parents suffering from all of these types of Dementia's

Here are a couple of links that maybe helpful to some of you also.....

These are the people that are going to help me with Mom and this way I can possibly keep her at home, and not put her anywhere else... I found out thought that they are like an "in home" adult day care not "true" Hospice. When you go into the "true hospice" scenario, then Medicare pays 100% of the bill BUT, no longer can you see "your own doctors", your medications are taken care of by them, and basically they take over all of it, and I can have the choice, say Mom came down with pneumonia, and needed to be in the hospital, I could stop "Hospice" immediately so her own PCP etc can take care of her, then restart it after her being in the hospital. 

I was kind of taken back when the Home Health Nurse told me that they could "no longer" see her if I went to Hospice, when the woman that came and spoke to me about "Home Instead" said that I could keep Home Health and have Home Instead here also. That is because they do not "take over everything", they provide more help as far as staying with her in the home as many hours as I want a week, day etc... 

they will help make sure she eats, has something to drink, does not "fall" again, can change sheets, do light laundry, and even run to the store for her, if something was needed, or say I come down and I am too ill, or when I have surgery, they can fill in and do all of their part staying with her, when I can't go over during that time... which is WHY the woman I talked with from a true "Hospice" ran by Medicare said in the 1st place they would "probably put her" in one of the "homes" NONE of which are even located near me! And basically it is $3,000.00 a MONTH! or more depending on the place, and she was more of a "sales woman" trying to make me spend Mom's money to put her somewhere than trying to do what I want and need at this time, and that need...

... someone to be there a few hours a day, a few days of the week, so she is being seen about, like I feel she gets up and falls when I leave... so sometimes in the late night or early morning, that is when this either falling, or she spills things, does not drink her Ensure, or eat... after I leave... I can pick the times, how many hours a day, how many days of the week, including weekends if need be that I need these people... again all here at her home NOT in some "nursing facility"... and they are very well trained... and have monthly updates and training meetings, so they are very versed in "dementia" Alzheimer's type of care... 

Anyway, I HAVE to get someone in ASAP! After her being on her knees by the bed, wit all of the sheets and everything pulled 
After and then she could not understand I just needed her to put her feet under her and push a bit, and we could have had her up on the potty chair, BUT, she holds onto things like the bed, and then she can't "get" to put her feet under her. I even noticed when I had the fire guys come in with an "assist lift" rather than allow them to just lift her and sit her down, she was trying to hold onto things making it difficult for them to put her where she needed to be.... I am also going to buy a bedrailing... 

I am checking on that today in fact. I believe I can get one that will fit on the bed, and now I am also putting her in the middle of the bed, and not allowing her to stay at one side. Plus I am going to look for a couple of "sippy cups" for her drinks. Then I can put the big tray I have on the bed where she is, and things will not spill... plus then things will be within her reach... I feel she does not even know to "look" at the nightstand and "see" drinks, Ensure etc are there.... I am just exasperated with the entire ordeal.... never in a billion years did I think things would be like this.... Life can deal us a heavy hand of no good cards at times for sure....

OH and by the way, MOM IS RUNNING OUT OF PAIN MEDS FOR HER BACK! She is on an Opioid but not something extremely strong. And she had not been really having to take them all that much, until this dementia has put her more in the bed etc. making her back worse... BUT I CALLED THE PAIN DOCTOR... told them the situation, that Mom cannot barely walk down her hall way, even with her walker, there is no way, I can get her out of the house, down stairs in the car and take her up to Dallas for a check up.... 

I just know I cannot even get her to sit in the living room for the most part, much less put her in a car and have her try to get into the doctors office for a visit! BUT he REFUSES to give her a refill (even though she has not had to have a refill since February) without HER COMING FOR AN OFFICE VISIT!!! It is insane and OUR CDC AND CONGRESS AT WORK DAMMIT!!! So, I told my PCP about it yesterday ( I am still in a very bad Lupus flare with a severe headache, and hurting all over) and even HE will NOT prescribe them and he KNOWS FIRST HAND what is going on!!! She is going to run out by next week and what do I do from there????? She is already unable to "move" without screaming out in pain, if we try to get her up and moving, unless she has a pain pill and it begins to work.... so this is just another bunch of crap to pile upon my shoulders.... and they wonder why "pain patients chronically ill" give up and just die... I feel they want us to... I am just livid about the entire ordeal.... 

Tuesday, January 26, 2016

Awesome Article from the National Pain Report ON Treating The Patient Not the Label

 Terrific Article on National Pain Management - ON Treating The Patient - Not The Label

By Terri Lewis, PhD
Terri Lewis, PhD is a frequent contributor to the National Pain Report. She is a daughter and a mother who has witnessed chronic pain first hand. She currently serves as an Assistant Professor, Rehabilitation Counseling and International Programs Consultant at National Changhua University of Education in Taiwan. She originally published this column on Linkedin on January 17.

Follow on Twitter - for National Pain Report

Wednesday, December 30, 2015

Petition and Comments of the Docket from the CDC on Pain Medications - we need your COMMENTS AND SIGNATURES!

This is a Petition in the Government Petition organization and we have over 20,000 letters and signatures on this one....

As this Petition is titled our doctors have been sworn to "Do No Harm" and if WE as True Pain patients cannot get our medications due to these ridiculous guidelines, then our doctors are going against the "Oath" they took to be physicians!

The DOCKET located here :!docketBrowser;rpp=25;po=0;dct=PS;D=CDC-2015-0112;refD=CDC-2015-0112-0001 

Has 1,300 COMMENTS but we need 13,000 or 20,000 COMMENTS!!! Please go in and take a few moments to comment and to sign the petition, you can do it anonymously if you wish... we have until January 13th... so be sure to get those in by then... it will close and then will will not be able to comment, and if you can't do it online, there is an address you can mail your comments to directly!

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