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 my joints all were hyper-extending. 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 their own personal rights to their 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 from the time 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" coming with many other voices through volunteering, non-profits, research, speaking out; this is what may make a difference, rather than one 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 apatient, 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, then usually he has one of his NP's 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 our governmental bodies that were 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...
