KNOWvember - U S Pain Foundation "From Overlooked to understood, advancing pain research together.

 

          https://uspainfoundation.org/knowvember/knowresearch/

MY VISION FOR THE FUTURE OF RHEUMATIC DISEASES AND MY PERSONAL STORY

 

MY VISION FOR THE FUTURE OF RHEUMATIC DISEASES AND MY PERSONAL STORY

I FINALLY got a proper diagnosis, and after the surgeons saw the actual joints, they saw this was not due to injury but was absolutely an arthritic issues that were then also not just osteoarthritis but Rheumatoid Arthritis. I also found out when I had an injury at 14 years old during a friendly game of baseball with my cousins and some friends. One of the guys accidentally slid into 2nd base and twisted my knee; I had torn cartilage. Years later, one of my orthopedic surgeons mentioned that if they had KNOWN about these diseases back then, they may have known it was more than just a kid's accident. My joints hyper-extend. That was probably the reason my knee was torn up from that. I noticed after that that my joints were all hyperextending. So many of us have the same stories, and like myself, many of us have never seen RA, Lupus, and of course, Osteoporosis has never gone into remission. Lupus goes into remission for months, only to rear its ugly head again. As far as the RA, I have always had activity, at times worse than others. NO biologic, nor any other medication they have tried, has worked.  I believe Osteoporosis is related to autoimmune issues. It certainly has caused me lots of grief due to NOT being able to have surgery to repair my lower back, to redo my right shoulder reverse replacement, and now my left thumb, wrist, and fingers are beyond repair. I saw my Orthopedic surgeon a week ago. Even HE feels it may not be feasible to do hand surgery. He also could NOT replace the first reverse shoulder replacement. After I fractured my scapula, my collarbone was broken in two pieces, and I fractured two ribs. I did NOT know the ribs were fractured until they did a CT scan 8 weeks after I fell, and saw the collarbone and shoulder blade were still fractured. They repaired the collarbone, and it looks hideous, but they could NOT repair my shoulder blade, so it is still never unionized. My ribs, of course, healed, but my right shoulder hangs 3 to 4 inches LOWER than my left one. He could NOT replace the first shoulder replacement due to no rotator cuff at all, plus my bones are so porous from the osteoporosis that the hardware would not hold. #MYDREAM is to see a "root cause" discovered for these rheumatic diseases and all autoimmune illnesses, and a total cure in the future for those who have them. I want to know that the future for children does NOT have to be like how many of us suffer and continue to try and find remission or a total cure.

I usually don't speak about "government" much. Everyone has the right to their own thoughts on Religion and Politics. However, when it comes to the health of our people, I will discuss my stance. This is a SERIOUS and VITAL issue from our Seniors to our Children!

We have spent all of our lives thinking doctors, Big Pharma, the CDC, HHS, the FDA, and ALL of our government were trying to help us fight so many crippling illnesses and deadly diseases.

Over twenty years ago, I KNEW SOMETHING WAS VERY WRONG WITH OUR WESTERN Medical system. I have fought my own health problems since I was 17 years old. When I was 35 years old, I had had enough. I  never knew exactly HOW TO SPEAK OUT about what I learned from my own experiences; along wth MANY others after I began to see social media and what a nightmare people have with our mainstream medical society.

We have been lied to, deceived, ignored, told we were insane, we were hypochondriacs, and DOCTORS were those TRAINED. It has taken all of my life so far for the TRUTH to begin to come out finally. The fight against deception began when people started to see it and had their eyes opened. We had non-profits formed that PATIENTS staffed, and those fed up with all we have had to put up with. We saw patients become leaders, to be volunteers, Ambassadors, to reach out and go to Washington D.C. to STAND UP AND TELL THEIR STORIES!

I was just ONE of the thousands who have stood in the offices and halls of Congress and told the government our stories. I literally watched my House of Representatives from my district CRY after I stood in front of them and told my journey through the pits of Hades when it came to disease illnesses, surgeries, medications, and ran the gamut OF TESTS, SPECIALISTS, AND TREATMENTS that didn't and continue to "POISON" US RATHER THAN keep us healthy. I had the misconception that doctors were educated to keep us healthy. They were not here to wait until we are critically ill, then throw medications, treatments, and pills that do not work. In fact, if you research most medications we are given for certain conditions, they make us more ill due to side effects that are often worse than the illness itself.

Three years ago, after voting every year since I was voting age, I STOPPED! WHY? Because I knew my "vote" counted for nothing. Our "voting" system is archaic and worthless. It is NOT here to help the people; it's here to keep many lining their pockets with our hard-earned money.

My thoughts are my "voice" among many other voices through volunteering, non-profits, research, and speaking out; this is what may make a difference, rather than a worthless vote.

I wrote my first book, and I joined the voices of several NON-PROFITS TO USE THE KNOWLEDGE AND terrible experiences I HAD BEEN through to CONTINUE TO SPEAK OUT. My voice is present on social media networks, my own blog, in my writing, and even face-to-face with those I meet in my hometown.

MY HOPE is that others will have their head taken out of the sand, and stand UP for their own health, along with so many that suffer with often disabling, debilitating, AND EVEN DEADLY ILLNESSES.

I have learned to speak out if I am not in agreement with my health care providers. I have the opportunity to tell my story anywhere I can.  I have found alternative health methods that can benefit us without side effects, hair loss, or exacerbating our existing health issues. YOU and your insurance, IF you have it, and it helps YOU

I never settle for what my medical folks tell me. I research, I question, I tell them exactly how I feel. The older physicians may not like what we have to say. They want to blame "Google", social media, and the internet for our "often different ways of thinking." YES, that is true. We have to dissect the information we find. We need to research every place we come across. We ask questions. We read what our non-profits find. We do not fall for all the bogus information we come across. So, when a doctor says you can't believe everything you read on "DR. Google," I say I don't! I DO research every test, every medication, every surgery (unless a true emergency), and I can't at the moment."

IF I offend one of my doctors who should listen to us, then if they have a specific reason for not agreeing with us, they should EXPLAIN their reasoning. Your doctor should never "gaslight us." If you have not researched medical GASLIGHTING, I SUGGEST YOU DO. IT EXISTS. You may never realize what is happening. We were taught THE DOCTOR IS ALWAYS CORRECT. That is NOT true! They are human too. They make mistakes. They have also been given schooling, training, and listened to Big Pharma, our insurance companies, and the government.

I have witnessed medical gaslighting myself more than once. When a doctor dismisses your questions, tells you that you are a hypochondriac, YOU do not KNOW WHAT YOU are talking ABOUT, QUIT BELIEVING DR. GOOGLE, not calling in medications on time, doing procedures and treatments that are not what we need, and even surgeries that could have been avoided, and even uddenly "firing us" as a patient for no good reason... THAT IS A PART OF MEDICAL GASLIGHTING.

Doctors who overload schedules, keep you sitting in a tiny room for HOURS waiting on them, are often ridiculous! OUR TIME is just as crucial as a doctor's. Sometimes emergencies happen. I've learned that if I am waiting in the room for a physician for over 2 hours, I get up, reschedule, and leave. I have recently done it twice. Bless my PCP heart. He genuinely cares so much; he often doesn't overbook, but he believes in spending enough time with a patient. Fortunately, I can ask him questions through the patient portal or share new information with him via message. He then has the information he needs for my visit. Or I do not have to make a trip for an office visit. He can answer my question or, at times, call in a script or have the nurse give me an injection for the Lupus/RA flares without having to see him.

The last time I finally got up and rescheduled, I had been sitting in the exam room for 3 hours. It was late in the afternoon, and he was still tied up with a patient, and my chart takes time to go through before an appointment. He never gets upset and understands. Due to chronic pain, if I have to wait too long, their office is like a freezer. The chairs provided for patients are incredibly uncomfortable. When I start to feel pain, need to get up and move around, or am so cold that it worsens the pain, and it's been over 2 hours, I reschedule. It happened to me twice 2 months ago. I left both times. It worked out.
The visit was to review my lab work, discuss my health conditions, address any new developments, and answer questions. If it is urgent, he usually has one of his NPs to take. LOOK at me. He usually KNOWS, UNLESS IT IS SOMETHING DIFFERENT THAN BEFORE. THEY KNOW THEY CAN WRITE THE SCRIPT IF I NEED AN ANTIBIOTIC AND SO FORTH. I AM IN AND out quickly. I've been a patient of his for 2 months since he came here. He has diagnosed me with things that others told me I did not have. He has been my PCP for 18 years. I can sometimes call or send a message with my symptoms and what's going on, and he can send in a script or decide if I need to be seen. He knows me so well, and he knows I usually know exactly what is wrong, so it saves me having to get out, go to an office when I am really FEELING TOO LOUSY TO GET OUT. He knows if I feel I need to be seen, I'll go in if necessary.

Recently, I found out about RFK, Jr. since he was elected to the HHS. I started listening to what he has to say, how he feels about our antiquated, totally messed-up medical system. He has spoken out about the FDA, CDC, Big Pharma, and how MONEY is what they want. They do not wish to keep us well. They would lose their shirts. Their MONEY would dry up. In other words, GREED rules our Big Pharma, and the governmental bodies put in place to keep us well. If they were to keep us well, we would not need statins, blood pressure medications, cancer medications, and autoimmune medications, which are off the charts!

He had written several books. One of them is about the "Wuhan lies" regarding COVID-19.

Of course, some of the others in the government want him out. They want to squelch his voice. After all, their funds would dwindle.

SO, THIS MORNING, I AM SPEAKING OUT! I am continuing to research HIS thoughts and THE BILLS he believes in. He certainly does not support our president's opinions.

Please don't give me grief about speaking out. My reasons are for each of you...

We Tend to Hide Pain and Disabilities

Some disabilities show on the outside. SOME disabilities do not show at all. Those of us with many of these disabilities hide. We do not want pity, sadness, longing, and all of the things people don't say or do say, because they don't know what to say.
For me, I want to feel normal, look normal, and be treated as if I had no pain, no illnesses, no tears, and no fear. I DO have a long list of worries and doubts. I often look at Bella and see the love in her big, brownish-green eyes, feel her long, silky ears, and those beautiful, huge paws. If there is a love of my life, she is. When no one else is around, when the pain and heartache are nearly too much to bear, Bella is my rock. Some may not understand how a dog gives you courage and unconditional love and takes away the fears of what life can throw at us.
I'm having difficulty beginning a new book. I've listened to music nonstop, read other books, watched "Virgin River" and "Good Witch" again, and watched a couple of Christmas Movies for inspiration.
I realize that writer's block is temporary. I've been through this before. I have so many emotions running through my heart and mind about how my life has been a hot mess due to illness, loss, and all of the other things life throws our way.
Each of you with a disability, whether seen or hidden, YOU are perfect. YOU deserve happiness and a life fulfilled in every way.
I had so many plans, being a nurse, and I wished I had known more about Functional Medicine and how we can heal without some of the terrible Western medicine that has been thrown at us. I seriously considered taking a Functional Medicine class to help others. They are expensive, but finding one you can trust is a huge issue. As I delve into this new book (although I had a 2nd one written), pray that I can find my path to help others.

GROUNDBREAKING NEW Cart T-Cell Therapy for Multiple Sclerosis Used on a school teacher in the UK

Source by www.The-Independent.com
A biology teacher became the UK's first multiple sclerosis patient to receive CAR T-cell therapy. The treatment genetically reprograms her own immune cells to target MS-causing B cells. Emily Henders received the three-minute infusion at University College London Hospital. She reports feeling normal with renewed energy following the procedure.
The therapy aims to provide long-term remission with a single treatment. This approach could potentially eliminate the need for ongoing medication. Doctors hope it will transform MS treatment by halting disease progression.

Rheumatoid "Diseases" NOT just arthritis

 

Many think RA (Rheumatoid Arthritis) is a form of osteoarthritis. That is not true. RA attacks joints and many other parts of the body. The lungs, heart, kidneys, brain, and other parts of the body can also be affected. Most likely, you have RA, and you have other health issues contributing to it.

Federal Government fails us, along with Big Pharma, FDA, CDC, DEA and more...

 I usually don't speak about "government" much. Everyone has the right to their own thoughts on Religion and Politics. However, when it comes to the health of our people, I will discuss my stance. This is a SERIOUS and VITAL issue from our Seniors to our Children!

We have spent all of our lives thinking doctors, Big Pharma, the CDC, HHS, the FDA, and ALL of our government were trying to help us fight so many crippling illnesses and deadly diseases.

Over twenty years ago, I KNEW SOMETHING WAS VERY WRONG WITH OUR WESTERN Medical system. I have fought my own health problems since I was 17 years old. When I was 35, I had had enough. I never knew exactly HOW TO SPEAK OUT about what I learned from my own experiences; along wth MANY others after I began to see social media and what a nightmare people have with our mainstream medical society.

We have been lied to, deceived, ignored, told we were insane, we were hypochondriacs, and DOCTORS were those TRAINED. It has taken all of my life so far for the TRUTH to finally begin to come out. The fight against deception began when people started to see it and had their eyes opened. We had non-profits formed that were staffed by PATIENTS, and those fed up with all we have had to put up with. We saw patients become leaders, to be volunteers, Ambassadors, to reach out and go to Washington D.C. to STAND UP AND TELL THEIR STORIES!

I was just ONE of the thousands who have stood in the offices and halls of Congress and told the government our stories. I literally watched my House of Representatives from my district CRY after I stood in front of them and told my journey through the pits of Hades when it came to disease illnesses, surgeries, medications, and ran the gamut OF TESTS, SPECIALISTS, AND TREATMENTS that didn't and continue to "POISON" US RATHER THAN keep us healthy. I had the misconception that doctors were educated to keep us healthy. They were not here to wait until we are critically ill, then throw medications, treatments, and pills that do not work. In fact, if you research most medications we are given for certain conditions, they make us more ill due to side effects that are often worse than the illness itself.

Three years ago, after voting every year since I was old enough to vote, I STOPPED! WHY? Because I knew my "vote" counted for nothing. Our "voting" system is archaic and worthless. It is NOT here to help the people; it's here to keep many lining their pockets with our hard-earned money.

My thoughts are my "voice" among many other voices through volunteering, non-profits, research, and speaking out; this is what may make a difference, rather than a worthless vote.

I wrote my first book, and I joined the voices of several NON-PROFITS TO USE THE KNOWLEDGE AND terrible experiences I HAD BEEN through to CONTINUE TO SPEAK OUT. My voice is present on social media networks, my own blog, in my writing, and even face-to-face with those I meet in my hometown.

MY HOPE is that others will have their head taken out of the sand, and stand UP for their own health, along with so many that suffer with often disabling, debilitating, AND EVEN DEADLY ILLNESSES.

I have learned to speak out if I am not in agreement with my health care providers. I have the opportunity to tell my story anywhere I can. I have found alternative health methods that can benefit us without side effects, hair loss, or exacerbating our existing health issues. YOU and your insurance, IF you have i,t and it helps YOU

I never settle for what my medical folks tell me. I research, I question, I tell them exactly how I feel. The older physicians may not like what we have to say. They want to blame "Google", social media, and the internet for our "often different ways of thinking." YES, that is true. We have to dissect the information we find. We need to research every place we come across. We ask questions. We read what our non-profits find. We do not fall for all the bogus information we come across. So, when a doctor says you can't believe everything you read on "DR. Google," I say I don't! I DO research every test, every medication, every surgery (unless a true emergency), and I can't at the moment."

IF I offend one of my doctors who should listen to us, then if they have a specific reason for not agreeing with us, they should EXPLAIN their reasoning. Your doctor should never "gaslight us." If you have not researched medical GASLIGHTING, I SUGGEST YOU DO. IT EXISTS. You may never realize what is happening. We were taught THE DOCTOR IS ALWAYS CORRECT. That is NOT true! They are human too. They make mistakes. They have also been given schooling, training, and listened to Big Pharma, our insurance companies, and the government.

I have witnessed medical gaslighting myself more than once. When a doctor dismisses your questions, tells you that you are a hypochondriac, YOU do not KNOW WHAT YOU are talking ABOUT, QUIT BELIEVING DR. GOOGLE, not calling in medications on time, doing procedures and treatments that are not what we need, and even surgeries that could have been avoided, and even uddenly "firing us" as a patient for no good reason... THAT IS A PART OF MEDICAL GASLIGHTING.

Doctors who overload schedules, keep you sitting in a tiny room for HOURS waiting on them, are often ridiculous! OUR TIME is just as crucial as a doctor's. Sometimes emergencies happen. I've learned that if I am waiting in the room for a physician for over 2 hours, I get up, reschedule, and leave. I have recently done it twice. Bless my PCP heart. He genuinely cares so much; he often doesn't overbook, but he believes in spending enough time with a patient. Fortunately, I can ask him questions through the patient portal or share new information with him via message. He then has the information he needs for my visit. Or I do not have to make a trip for an office visit. He can answer my question or, at times, call in a script or have the nurse give me an injection for the Lupus/RA flares without having to see him.

The last time I finally got up and rescheduled, I had been sitting in the exam room for 3 hours. It was late in the afternoon, and he was still tied up with a patient, and my chart takes time to go through before an appointment. He never gets upset and understands. Due to chronic pain, if I have to wait too long, their office is like a freezer. The chairs provided for patients are incredibly uncomfortable. When I start to feel pain, need to get up and move around, or am so cold that it worsens the pain, and it's been over 2 hours, I reschedule. It happened to me twice 2 months ago. I left both times. It worked out.
The visit was to review my lab work, discuss my health conditions, and address any new developments or answer questions. If it is urgent, he usually has one of his NPs to take. LOOK at me. He usually KNOWS, UNLESS IT IS SOMETHING DIFFERENT THAN BEFORE. THEY KNOW THEY CAN WRITE THE SCRIPT IF I NEED AN ANTIBIOTIC AND SO FORTH. I AM IN AND out quickly. I've been a patient of his for 2 months since he came here. He has diagnosed me with things that others told me I did not have. He has been my PCP for 18 years. I can sometimes call or send a message with my symptoms and what's going on, and he can send in a script or decide if I need to be seen. He knows me so well, and he knows I usually know exactly what is wrong, so it saves me having to get out, go to an office when I am really FEELING TOO LOUSY TO GET OUT. He knows if I feel I need to be seen, I'll go in if necessary.

Recently, I found out about RFK, Jr. since he was elected to the HHS. I started listening to what he has to say, how he feels about our antiquated, totally messed-up medical system. He has spoken out about the FDA, CDC, Big Pharma, and how MONEY is what they want. They do not wish to keep us well. They would lose their shirts. Their MONEY would dry up. In other words, GREED rules our Big Pharma, and the governmental bodies put in place to keep us well. If they were to keep us well, we would not need statins, blood pressure medications, cancer medications, and autoimmune medications, which are off the charts!

He had written several books. One of them concerns the "Wuhan lies" about COVID-19.

Of course, some of the others in the government want him out. They want to squelch his voice. After all, their funds would dwindle.

SO, THIS MORNING, I AM SPEAKING OUT! I am continuing to research HIS thoughts and THE BILLS he believes in. He certainly does not support our president's opinions.

Please don't give me grief about speaking out. My reasons are for each of you...

Unmasking Pain: Because Pain is More Than a Chart. It’s a Life.

Unmasking Pain: Because Pain is More Than a Chart. It’s a Life.

#ThisIsPain | Pain Awareness Month 2025

Every day, more than 1 in 4 Americans navigate chronic pain. Yet for too many, their suffering remains overlooked, doubted, or dismissed. This Pain Awareness Month, we’re unmasking the hidden realities of chronic pain—because it’s more than a number on a pain scale or a symptom in a chart. It’s a lived experience. A lifelong challenge. A call to compassion, reform, and justice.... continue reading LINK...

SEPTEMBER IS PAIN AWARENESS MONTH

 

                                               #ThisIsPain        

https://www.prnewswire.com/news-releases/unmasking-pain-us-pain-foundation-releases-landmark-data-for-pain-awareness-month-2025-302543315.html?tc=eml_cleartime  

Unmasking Pain: U.S. Pain Foundation Releases Landmark Data for Pain Awareness Month 2025

"Thyroid Eye Disease?" or Other Issues from Medications or what??

I've been having vision problems for months. I went and had my annual eye visit. They check my vision once a year due to one of the medications I take for Lupus. 

I mentioned it to my PCP. He is suggesting a different Ophthalmologist to see what's going on. I fear I'm losing my vision!! I have double vision again. I am always "off" when I type. I have always been able to spell incredibly and type correctly, but my typing has gone to hell. 

Here I am, a writer/author, and I need to not only write here more, but I also NEED TO COMPLETE 3 other books. I have one poetry book nearly ready TO PUBLISH! I cannot sit long enough because I get frustrated with either having double vision or closing my left eye to see. I went and had new glasses made. Then I had another pair made with blue light blockers in them. Sometimes, I could look at the computer screen too long, causing my eye issues. 

I am still not seeing correctly up close. It is not my far-off vision, although it is not the greatest; it's the close-up vision that has really gotten bad. I feel my regular ophthalmologist has not found what is really going on. 

I keep thinking it has more to do with my Hashimoto's, or something to do with my adrenal glands and/or thyroid problems. I need to see a neurologist or another specialist, not another eye specialist. 

Our weather has been insane. People ask me why I stay in Texas. I cannot stand most of the weather here: the bugs, the heat, the humidity, too much rain, not enough rain, the ground being mainly clay, which is a nightmare, and our houses moving. I had a huge leak (actually three water leaks) two weeks ago. It cost me over 2,000.00!

We have EVERY KIBD IF ANT, FLY, WATER BUG, SPIDER, YOU NAME IT, WE HAVE IT! From mosquitoes to fire ants! FROM SUGAR ANTS TO EVERY KIND OF SPIDER. 

You must spray, put out, and spread every kind of bug, wasp, and weed killer. It's all expensive, but without it, the bugs will cover you up!

I have been going through the social Masterclass every month since January, so I have attended 6 in total so far. I am really learning A GREAT DEAL more than I knew about the "Hashimoto's," which no doctor bothers to tell you is an AUTOIMMUNE ILLNESS!

I have begun a huge regimen of supplements since January. I want to GET OFF of all of the terrible medications that do not help with my RA! I realize I will have to be on some medicines for the rest of my life. Still, I think if I can get a balance of supplements and proper diet, I can let go of some of them and not have to poison my body with so much of Big Pharma's not truly truthworthy nedications being made so quickly an out out there mainly on  FAST TRACK NOW, I may find myself in a better frame of health and mind. 

Believe me, if I felt I could go back to Seattle or close to my dear friend Aimee in Lancaster CA I would be there!

Keith Urban - For You (Official Music Video) FOR OUR TROOPS AND THOSE WHO SERVE AND PROTECT US DAILY!~