A COMMENTARY, AND THE TRUTH FACE TO FACE WITH PATIENTS SUFFERING LEGITIMATE PAIN, & WHAT MIGHT HAPPEN IF THEY CAN NO LONGER GET THEIR MEDICATIONS...

IF this does not hit the "NAIL ON THE HEAD" ABOUT the truth of chronic pain patients, and those of us, who suffer daily, and what might happen if we no longer were able to have relief with our medications.

 

Most of us would gladly throw away pain medications, if WE WERE NOT IN HORRIBLY, CHRONIC AND OFTEN DAILY SEVERE PAIN!

 

 

 

http://globalnews.ca/news/3571142/commentary-a-deeply-disturbing-email-begins-to-tell-the-opioid-story-for-chronic-pain-patients/

By Roy Green Host, Corus Radio Network  Global News 

 

The Memories of Life BEFORE Chronic Pain & Illnesse"S", thoughts of simpler times, knowing one should NEVER be "complacent" & not share your feelings, all too often "we" lose out

In The World We Now Live In, All Too Often Many Of Us Remember Times that were Simpler, Many of Us Without Chronic Pain and Suffering, not Fighting to Get Into See Physicians, or Fighting to Get Insurance Companies to Pay the Bills. We also Were Not "Surrounded by A Sea of Specialists" Parents and Kids Never had to Be Concerned Over "kids Abusing Drugs", we could Leave Our Windows Open, Our Doors Unlocked, Those Time When a "Mean World" did not exist. You Could Walk down The Street, You could Drive down The Highway, Kids could Play in Their Yards, We were not a Country, And World filled with Violence, Hatred, Bigotry, None a few years ago would have been a "Suicide Bombers" or 'Home Grown" Terrorists; in fact any type" of Terrorists

 

 

Time were filled with good memories, vacations with families, getting together with the Neighbors, Having a "treat" of a Hamburger and Fries on Paydays. Deer Hunting, Fishing, and Our Minds Filled with The Promise of a Brighter Future... now WE LONG for those times that gas was .50 a gallon, and $10.00 would buy enough groceries for a month. We have such gratefulness and I know for myself, a "Longing" to live in "that World" again...

 

I had been "going over" all kinds of memories, good times. lousy times, and all of the "quickness" of how time goes by. My daughter and I were talking on the phone yesterday. She had taken the boys to get school shoes and clothes. She was saying that of course Logan, the youngest, still has a "school supply" list, yet James, who it just dawned on me, my oldest Grandson is going into JR. HIGH SCHOOL this year. So, of course they wait for many of the supplies because the teachers will want different things. That got me to thinking and remembering what seems like just yesterday, that Amanda and Jimbo brought James up from Corpus, he was only about 6 WEEKS old, born on December 6th, 2005. I had really just moved back to Texas, after being in Seattle for almost 5 years, and only had been back myself for about 2 weeks or so.

 

I got to looking at all of the photo's over the years, how little James was, then Logan, who is almost 5 years younger than James, is also getting much older, growing like a weed, and is now I believe 7 and going into the 2nd grade! Heather my Granddaughter, who was only 2 years old when Amanda and Jimbo began seeing one another, is now been out of high school over a year, and is starting on her 2nd year in college, working, and getting ready to go to nursing school probably next spring. As I thought about my years, my hopes, dreams, possibilities, the things I accomplished, things I wished I had accomplished, and that "list of deals, times, events, and yet dreams" of what we "hope" we get to do, before we are "no longer here" on this "plain" and have stepped into another realm. I've been blessed with the incredible children, grown, never was into loads of trouble, drugs, causing problems, both have the high school diploma's and have some college, certificates and so forth. I had a son in law that is that is the most caring, nurturing, loving, comforting, care taking husband, son and Father I believe I've ever known.

 

 My daughter and him met when she was about 15 years old, and as of today, and what will probably be the rest of their lives, that have a stable, happy, loving home, with three incredible kids, and they are blessed, and I am blessed and a better person for my daughter, son and son in law. When I think about how much I "missed out on" from my personal ideology that I so wanted to accomplish, I began pondering that first of all, when I was in school, and for the most part when my kids were in school, there was NOT a great deal of "meanness" of drugs, of those who choose to terrify other kids... life honestly was much simpler, especially when i was in high school. Yet, the very things I felt I would either "do" etc in my own personal life, much I never accomplished. I wanted to be a nurse, and in the medical profession, from the time I was about 13. I began my "writing" at 14, and felt I would be compelled to be a very accomplished author in the time to come. I wanted to travel much more, even overseas to many of the European countries, yet I've only been out of "the states" once, and that was to Mexico. I never even got the chance to go up to British Columbia when I was in Seattle.

 

It happened that I went shortly after 9/11, and things at the borders had really changed. In fact, I never owned a passport. I've seen many of our states, had many vacation from those with my parents, to those that I took my kids on, to those I've been with someone else, and then even by myself, to Austin TX, to Lancaster CA, to Phoenix AZ, been snow skiing, and have had many great experiences, even though I also "missed out" on many, that for one reason or the other, life turned me a new direction, thus I did something else, other than what I "thought I would".... at 57 years old, and suffering from several chronic and severe illnesses and pain, it makes it more difficult that when I was younger and in better health to jump up and spend a weekend in San Antonio, or go to Dallas dancing, or just for a night out on the town...

 

 I still have "some of those dreams" on a list, I don't really like the term "bucket list"... for some reason that just does not sound correct to me... but I have come to see that life is a challenge and LIFE FLIES BY TOO QUICKLY, you blink and you are in college, and you blink again, and you are over 50... pondering over where the time went, and why you did or didn't do some of the things you did. I've had many people over the years ask me how I "withstand" the illnesses and pain... 

 

well "faith" and "hope" along with what little bit of family I have, along with my "fur babies" keep me trudging forward even when i feel like throwing in the towel. So, tell everyone you love, that you love them, every chance you get, never take one moment for "granted" for the next one may not be there, never pass up an opportunity, if you can, to do something you have always wanted to do, be kind to those around you, be courteous to the elderly, those who are suffering, and even if you don't "give financially" giving FROM THE HEART, and with NO expectations, other than it made you feel good to do something... for coming from the heart and soul, is truly blessing someone else. I sit here today, alone, well Peanut is here, but no other "human" - and I do get lonely, I do at times feel that I've "failed" at marriage more than once. But, in my heart of hearts, i do cherish the "love" I've had, have and maybe someday have again.... Thanks to each and everyone of you, that give me a "lift" when this life seems to "weigh me down".... for you are a true blessing yourself....

AS I post this, and see how many concerned people come to my blog over the Healthcare Crisis I spoke about... I continue with things I usually don't discuss - Our Political "Future" and the Effects on All, Especially the Chronically Ill

As I watched the Night New last night, and once again, the "fight" over Health Care, continues to cause many, many of us terrible stress. Either we are ill, or have children or other family members ill, or cannot afford the outrageous and constantly rising costs of healthcare and health insurance.

Believe me, after the hip fractures last December, then the cervical neck surgery this past April and the RIDICULOUS CHARGES FROM MY DOCTORS, FOR A CERVICAL BONE STIM DEVICE, TO the the rest of the charges from an ambulance, to the radiologists, the anesthesialogists, to medications, and more, it is like that governments just soon us to "die" rather than "burden" the nation with our chronic health problems.

But, look at "John McCain"... you can bet the government is making sure he has the very, very best care, and all of what he needs to hopefully survive the tumor they found. Which of course I hope so also. I "no matter what "party" I lean towards" would not want anyone in our governments bodies to be ill and pass away.

But, those Congress men and women, and all of our governmental people get the best care the rest of their lives. Even after they are no longer involved and "retire" they still are well taken care of, with pensions, healthcare and benefits.

Which I am not putting down, BUT WHAT ABOUT ALL OF US THAT ARE HERE SUPPORTING THEM? Their own constituents that are the ones that "vote" them in? I am sorry but our President is just not the right person for the job. Not when it comes to many things, he just does not know or understand how to handle. And this constant "tweeting" of major information I feel is somewhat ridiculous. Not ALL that goes on, due to many reasons, needs to be "tweeted" over the world!!!!!

Here is my post from Facebook, as to what I went through last week with doctors and now more health issues that I am fighting with...

I'm totally exhausted! Yesterday having 2 doctors appts in Dallas, that were scheduled one for early morning and the other mid afternoon in two totally different locations, about got to me this morning. But, my son and I did have a great time together. I was glad he went. We got to talk about lots of things, as well as he got to see my Rheumatologist and my Pain Dr. whom he had not met either. I wanted him to witness himself what fantastic doctors I have, and he immediately saw that my Rheumatologist was truly a "God-send" as well as my Pain Doctor also.

But, now my Rheumatologist wants me to see another "specialist" which I did not even know existed, which is a Metabolic Mineral and Bone Specialist, mainly due to the Osteoporosis, in which he was extremely concerned due to those that have "fractures of the hip" especially due to osteoporosis, have a 20% HIGHER mortality rate than those without one and without osteoporosis, plus just having the RA and Lupus, already leads me into a higher possibility of not "living as long" as others without it. This doctor also may have other options to "treat" the osteoporosis, and may provide answers about why I'm having the "chilled totally drenching night sweats, since this could be related to an "insulin" problem with my metabolic systems, which can be a "parathyroid" which is NOT related to regular "Thyroid conditions" and other issues that may lead us to find out more about chronic health illnesses, that maybe what I could be having and don't know it. So, I have to have another bone density scan next week on Tuesday, then schedule an appt with the specialist at at SW Med Center in Dallas.

I have to have the scan and results to take with me, so I am waiting before I schedule the appt. Hopefully it will be soon, so we can find out what could be going on, which as he also said, I am a very "complicated" patient, which ALL of my doctors say, so we shall see. Then I had my pain ump refilled, and I guess i should have "insisted" he up my meds. I am in so much pain again today, I am about in tears.

 Also he thinks my finger problems, are eczema, so he called in some oinment for those increased my Sulfasalazine, by 500 mg more twice daily, and if we don't see results in 2 months then we probably will move on to Acterma for the RA... the Enbrel may not be dong it's job, if by 2 more months I am not much better. So, again a med change... probably.... anyway, lots going on, and I hurt like hell... but I've got to get out briefly for a couple of things, then I hope to have myself on the sofa. We have yet another horribly hot day with "heat warnings, again... for about the 5th day.... I will probably not post much more today, just wanted to let you know a bit about my appts yesterday...

From the Arthritis Foundation to the AMA, to ALL of THOSE concerned with the "fate" of our Health Insurance PLEASE sign a petition, call Congress People, email, LET YOUR VOICE BE HEARD!

I know MANY OF US, ARE SITTING ON PINS AND NEEDLES DUE TO THIS "OBAMA" REPEAL, REWRITE on OUR HEALTHCARE SITUATION!

All of us with our own CHRONIC PAIN AND HEALTH PROBLEMS, to those with CHILDREN with Chronic Health issues, we ALL need to take a stance and LET OUR CONGRESS PEOPLE KNOW HOW WE FEEL!!!



Taking "Medicaid" benefits or lowering them to where doctors will not even see a person, or just plain getting rid of many doctors that will refuse to take some of these health insurances due to NOT GETTING PAID, OR NOT ENOUGH, is ridiculous!!!


WE, THE PEOPLE, OF THE UNITED STATES OF AMERICA, ARE SUPPOSED TO BE IN THE GREATEST NATION ON THE GLOBE, YET MANY OTHER COUNTRIES TAKE CARE OF THE HEALTH AND WELL BEING OF THEIR CITIZENS AND WE CAN'T??????
WHY!? Because MONEY is not being "handled" properly. GREED, FROM EVERY place in our governmental bodies, and THOSE THAT DO NOT UNDERSTAND, how horrible it is to BE ILL, AND NOT BE ABLE TO SEE A DOCTOR, OR AFFORD IT, OR MEDICATIONS!

Those in "Congress" and most other government jobs, GET PREMIUM HEALTH COVERAGE, THE REST OF THEIR LIVES, so they don't have to "worry" over the costs and expenses of GOING BROKE! If you can't afford your children's vaccinations, or their medications, or your own medications!

I have been "watching" the "costs" of my medications, even though my insurance "pays well" what gets me is EVEN GENERIC PRESCRIPTIONS ARE SOMETIMES 3, 4, 500.00!!! A MONTH, so tell me and we wonder why our health insurance premiums are too high, or if you have to buy medications without insurance, YOU CANNOT AFFORD SCRIPTS THAT ARE THOUSANDS OF DOLLARS A MONTH! It is totally insane....


It just chills me to the bone, and makes my blood 'boil" at the same time to witness only ONE of my meds in "Generic" and the "total cost" of it at 500.00 a month!

I CALL THAT GREED!!!!

So, look up your DISCTRICT CONGRESSIONAL LEADERS, AND SEND THEM EMAILS, OR MANY OF US ALREADY GET PETITIONS, OR LETTERS TO SIGN FROM VARIOUS PLACES, LIKE THE ARTHRITIS FOUNDATION, OR THE AMA SENDS ME INFORMATION, and just about any and every non-profit or Foundation that has to do with the rising costs of medical insurance, the government taking away benefits, and leaving people "hung out to dry"....

Here are a few links:

This is at the Arthritis Foundation if you are already an Ambassador or an Advocate you just fill in a couple of blanks, or you can sign up, just for the letter to Congress...

https://af.ac360.aristotleactioncenter.com/?alertid=e89992b5-9589-47ad-bcbb-d1dedf905050&alertType=legislative#/alertId/e89992b5-9589-47ad-bcbb-d1dedf905050/

  
Mom's Rising.Org


Email Congresss, Tweet or Call the AMA's Link:

https://www.votervoice.net/PAN/3/Campaigns/50663/Respond


These are just a few!!!!! Just about any foundation dealing with medical/health problems, and patients, and insurance, along with involved in getting the government on board where they need to be, you will find a place you can sign something on....

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 Apple.com 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!

https://creakyjoints.org/

https://www.ghlf.org/

https://www.50statenetwork.org/

 

https://arthritispower.org