Showing posts with label quality of life. Show all posts
Showing posts with label quality of life. Show all posts

Friday, January 26, 2018

Arthritis Foundation and Washington DC March 2018!

It's Time to be United! In the Fight Against this horrific life altering diseases



It is almost here! Another year gone by and time to get to Washington DC with the Arthritis Foundation to get on the bandwagon and get the House of Representatives off their "kiesters" and on up to getting a Cure for RA, Osteoarthritis, and all the many other diseases that an be "packaged" into these... we keep hearing more and more about "pain" and now this "opioid crisis"... 

If there was a "cure" or a way to "regenerate" the damage that so many of this horrid illnesses cause some would NOT NEED pain medications!!!

So, those who get to go, tell them YOUR story, your children's stories, or whomever you are there to represent!


Thursday, March 17, 2016

Still Just PEEVED over this mess about Pain Medications and the CDC! WE are ALL NOT ADDICTS OR ABUSERS!!

I am just so TOTALLY PEEVED at the CDC and ALL that they present when it comes to Pain Medications, especially "opioids" I want to SCREAM! YES, there are those who choose to abuse... but that abuse is FAR NOT what has been in the main stream of the news, and from the CDC! Right now, and I know many that suffer from all types of severe chronic pain daily... if WE including myself, had any OTHER CHOICE, and did NOT have to have these medications in order to have a better quality of life, you can BET WE WOULD CHOOSE SOMETHING ELSE! Many, MANY OF US, have lived through YEARS AND YEARS OF HELL! We have been through the many tests, all of the other medications, we do "exercise", we do try and go on with our lives, we DO ABIDE BY OUR DOCTORS RULES AND REGULATIONS, we DO everything we are supposed to do OR NOT SUPPOSED TO DO, in order to try and not have to take pain medications YET FOR SOME OF US, THEY ARE OUR SAVING GRACE! They are what allows us to get up in the mornings, and go on about our days the best we know how, whether that is work (and even with my medications I had to stop working in 2003, and spent until 2007 getting my disability! Durong that time I SURVIVED barely, with very little medication, BUT I was too ill to work, too ill to really do much of anything, I had lost hope, and was about at the end of my own rope, until I FINALLY FOUND MY pain specialist who tried to put my life back on a tract of being able to "live"... DO THEY TAKE AWAY ALL PAIN? NO! NOTHING, but the day we LEAVE THIS PLACE AND MOVE ONTO WHEREVER WE GO FROM HERE, will ALL OF OUR PAIN BE GONE! BUT, can we "take it", can we "live with it", can we do things with our families, some of us still work, do advocacy work, be useful in our society, in our neighborhoods, churches, with our loved ones, and try to enjoy life as much as possible... 

YES! I realize that without all of the other surgeries, PLUS more ahead, my pain would only get worse... so even though due to my heart problems, and other illnesses, I take a chance, I DO have surgery IF my doctors tell me they have a chance to "lessen" "new pain" that comes when you have degeneration of joints, of your spine, when things happen you have NO control over, that can cause further pain, you DO what you CAN to NOT have to take any more medications... after all any of us can only take so much medication, no matter what type it is... and any medication works only as well as your physical, emotional and mental state allows it to... 

BUT WITHOUT MY pain medications, I would NOT be able to take care of my aging Mom, who is 81 and now suffering from probably Alzheimer's or some type of Dementia. I could not do my laundry, take care of my house as much as I can, try and cook for myself, take care of bills, and do my very best to go on with my life as I do... I just posted that this WEEK HAS BEEN HELL! Pain due to weather change, time change, and just me having to do more that usual this week brought on more pain.... 

BUT, I still try and get up, move forward, some day more slowly than others, but try my best to take ALL OF MY MEDICATIONS AND LIVE LIFE! SO, WHEN I read and hear about the CDC, and all of those WHO HAVE NO CLUE WHAT LIFE IS LIKE... AND WHAT IT WOULD NOT BE LIKE, IF I WERE NOT ABLE TO have my medications, IT REALLY MAKES MY BLOOD BOIL! I can GUARANTEE YOU IF ONE OF THEM, OR ONE OF THEIR LOVED ONES, SUFFERED THE SEVERITY OF PAIN that some of us do, or WOULD WITHOUT OUR MEDICATIONS, they WOULD ALSO BE FIGHTING THE GOOD FIGHT TO TELL THEIR STORIES, AND make sure they OR THEIR LOVED ONES WERE ABLE TO GET THE PROPER TREATMENTS AND MEDICATIONS THAT THEY NEEDED IN ORDER TO NOT SUFFER DAILY! My hopes are that ALL OF US THAT UNDERSTAND THIS PASS THIS AROUND, WE TELL OUR STORIES, WE CONTINUE TO FIGHT AGAINST THIS MESS OF OUR STIGMA WE ARE ALL "ADDICTED"... WHICH IS BULL.. I never feel "high", I feel relief, relief enough that I can go on with my day.... and if you see me WITHOUT MY MEDICATIONS, you would see someone who was in so much pain, that walking across my little home would be horrible, AND WHEN I have my medications, I am able to try and move on with my life.....

http://nationalpainreport.com/cdc-opioid-guidelines-released-8829808.html 


I hope YOU TOO will stand up and tell your story! WE must stand together on this!

Monday, December 14, 2015

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


Tuesday, August 25, 2015

September 2015 "National Pain Awareness Month" right around the corner and "Beautify in Blue Campaign" by the US Pain Foundation

I will go ahead and mention that I got our Mayor here in my Hometown to sign a "Proclamation" for September 2015 being National Pain Awareness Month! The US Pain Foundation is "hosting" a "Beautify in Blue" Campaign to bring awareness into our towns and cities. Ennis has allowed me to be a part of this event for September. I am not sure all of what my package will be from the Foundation, but I will have signs, posters, ribbons and so forth to put up around town. So, I am thrilled to be able to do something and give our town a look at just how chronic pain can "control" your life, and just how many right here in town suffer from all types of illnesses that also have chronic pain issues in tandem. Even one of the gentleman that does okay these types of projects told me he suffers from Migraines. It is amazing when you speak out about some of the chronic illnesses and pain here in your own "backyard" so to speak, how many others are also suffering too. I have two cousins, both suffering from RA, even before I was diagnosed. In fact my 1st cousin Mike, who just lost his Mom to stomach cancer (my Mom's sister and my Aunt of course) just had hip replacement, this is his 2nd replacement - (two weeks ago), he had his other hip done, about the time I was having one of my knee replacements done probably in 2008 or so. I have had "so many" and in 2007. I believe I went through about 7 surgeries or more on joints, so the dates sometimes become a blur. But, I know others that I run into in the market of Wally World and so on, that also have issues, some of them like my neighbors across the street, the Mom, and both sisters all have diabetes. I believe their Dad also suffered from it. In fact the youngest sister, and she was maybe in her 40's passed away about a year ago after fighting diabetes. She had already been on dialysis. The Mom has also been on dialysis now for several years. She "shattered" a knee not too long ago and spent weeks in the hospital and in rehab, but due to her illness, and the dialysis and age, they would not do surgery on the knee. I don't think the doctors feel she could make it through the surgery. She is sometimes so weak, they have a difficult time just getting her to dialysis. It is just sad to see what the entire family is enduring. The son, is just an incredible man. I don't think he has been "plagued" with diabetes yet. But, he also has two strikes against him on both sides of the family. You don't see it as much in men, especially the type they have, but with the family history, he certainly could succumb to it.

After all of the advocacy I do for Autoimmune Illnesses, Lupus, RA, Sjogren's, and also Arthritis the AI kind, as well as osteoarthritis, along with Cancer and Heart Disease, sometimes the issues of Chronic Pain kind of take a "back seat" in my activist roles. 

So, since Chronic Pain, which of course I know all too well, from my own personal and up close experience with it now for many years, well before the Autoimmune Issues were diagnosed, I suffered from such horrific Migraines that I was sick with them sometimes several times a month, for many years throughout the time I was about 17 years old, until about the age of 45 or so. 

They became so bad at times, that I had to resign jobs, that I had been in for years at a time. It became such a burden, yet back then there were not many answers as far as migraines went. They had very few medications, most of them of course narcotic pain medication, and even back then, the doctors were so leery about giving them. But, if I did not have my prescriptions, it never failed I wound up in the Emergency Room so many times, and even that for one got OLD very quickly, and for TWO, of course the ER doctors began to think of course I was after the "drugs" rather than having Migraines so bad. 

So, oddly enough, once the diagnosis of the autoimmune illnesses were made, and I finally found after years and years of suffering by then all types of chronic pain issues, an awesome Pain Management doctor, who has been taking care of me now for at least 8 years maybe more... and he even put in my internal pain pump in 2010. 

My migraines seemed to have calmed down, even before the pain pump. and began to change. I began to have "Lupus Migraines"... and an injection of corticosteroids, along with a step down pack for 7 to 14 days, was the only thing that helped those.


But, my chronic pain became more complicated due to all of the severe joint issues, of which some I have had surgery and others still bother me with chronic pain, which is a part of many AI illnesses.

So, I felt compelled to now do some advocacy work in the realms of Chronic Pain.

Thus my reason for helping out with National Pain Awareness Month, and the Beautify in Blue Campaign. I hope to be able to help educate others about Chronic Pain, and just how badly it can also effect your quality of life. 

Saturday, January 24, 2015

The Movie "Cake" Comes Out and Receives Reviews - I feel Jennifer Aniston Brings Light to Chronic Pain Patients

I noticed several "not so great" reviews of the movie. None of them were really putting down Jennifer Aniston and her role that she played, but moreover it seemed like the critics viewed the script as being "watered down" from its original writing. I believe originally it must have went out on a limb even further to depict the life that so many of us totally understand. This is NOT some fairy tale, or some kind of "mystery novel", or just another movie. It is depicting a very true sense of what any and all of us have been through chronic pain and/or chronic illness have in our own reality, daily. We live this over and over again. The pain, the anger, the place and time we want to throw in the towel, give up, and say NO MORE! 

Anyone who goes through pain such as this nagging, agitating, never ending, daily, grinding, aching, stabbing, just RAW type of something you know you may have to continue to live with day after day, month after month, year after year.... there comes a place for many of us, that we must stand back, and kind of "observe" what is happening to us. You add in the amount of stress, of trying to hold it together for a job, for a family, a spouse, or for the world "outside". 
No one ever wants to appear "weak"... and some where down the line, we have had hammered into our brains, thoughts, and reality that showing "pain" in any form is a true sign of weakness, of not being able to weather the storm, of being someone "less than", and rather than be draped in understanding and help, we wind up totally alone, all of our friends and family suddenly disappear, and we seem to be just a heap of flesh and bone, that others can't deal with. 
You will find in your own walk with pain, that others, whether it be family, a spouse, close friends, even your doctors and medical professionals want to "shed" themselves of you. The idea that they have to watch "you" in such pain, brings them to think about their own life, and they almost act as if "pain" is contagious. You are carrying something around they can "catch" like the flu or a cold, so they shun you. 

I've had to deal with physicians back over 20 years ago, when I began having migraines. At that period of time & even to this modern day of medicine, some physicians have this "ideology"  that "women" are complainers. Either they want to blame our pain and illness on "stress" or another huge one was "depression", or that it is "hormones", and many often just wanted to press that the female gender were more likely to use "pain" as a crutch. I've even on more than one occasion dealt with physicians that actually believed I was just some woman looking for "drugs" rather than the reality I was in horrid pain. 
Men as a whole, have always been taken more seriously when it comes to pain. If two people, one a woman, and one a man, came into the emergency room complaining of severe pain, you used to be able to bet the man would get "treatment" not only more quickly, but probably medication and help that would be able to help with the pain. The woman on the other hand maybe sent away, with some kind of excuse, and told to see their doctors the next day and so forth. 
Things have changed somewhat in the past 10 to 12 years, and we as the female species tend to be taken more seriously when it comes to pain. I can recall the day I drove myself to the ER, having a heart attack, in pain. and they actually took me seriously. 

Yet, I had been to that exact same ER on many occasions before that with a severe, intractable migraine, and depending on which physician was on duty at that moment, it was a crap shoot as to whether I would receive the proper treatment, or be a "guinea pig" for something I knew would not work, and then sent home without the help I needed. In the years from about the age of 21 through my early 40's I watched this happen again and again. Whether it was the ER, my doctors office, or a clinic, I never quite knew how I would be treated. Like I said above, I had been given just about every crack pot diagnosis there was because of being female. I am sure many doctors out there will deny that, and most of them are probably now retired or have passed away. Yet, I've ran into the exact same mind set recently. You can guarantee, with the ongoing health issues I have now, if I get even a "hint" of being put off, or not taken seriously about my health problems , I am out of that office, down the road and looking for a new physician. 
I've learned no one has to take being treated as if they are not telling the truth, or not being taken seriously. 

I've had to learn the lesson that physicians' are also humans. They have been looked upon as some "special species" that make no mistakes, everything they tel us we should take to heart very seriously, and that you NEVER not do as your doctors advise. I am here to tell you, doctors are not PERFECT. The "advice" they give us as patients is "advice". Just because a physician recommends a certain test, treatment, medication or a specialist, does NOT mean you must bow down like he is the "Lord" himself and rush off without questioning the reasons behind what he or she is doing. You, as the patient, have MANY rights. First of all, you have the right to be treated as an intelligent human, with either symptoms you are concerned about, or a chronic illness or pain that you are there to follow up on. You have all the rights that are in the "Patients Bill of Rights" to ask every question you wish. If it is about a medication, and you feel it may not for one reason or the other be something you need to take, then question why that drug is important. If there are tests to be done that your medical professional is "suggesting", whether lab work, nerve conduction studies, X-Rays, MRI's, CT Scans, and many others, you have the absolute freedom to ask why that particular test is being performed. What will it help to either show, if anything is wrong, and if you have recently been through the "exact same" type of test within a few months of one another, then you SHOULD be asking them what is the importance of doing a procedure you just did a few months back.

It stands as a well known fact these days, that "specialists" all too often want to have "their own" procedures, testing, labs done. Even though another physician may have just done all of the exact things a month or two ago, there is this "code" some doctors have that rather than look at whats already just been done, and work from there, it seems another "new" set of tests performed by their "preference" of labs, techs, and so on may be able to do it better; more efficiently, or possibly the others missed something when they did the test a month ago. I can almost guarantee under most circumstances there will be nothing different. Unless you have some type of health issue, such as cancer, or blood clots, or some other very fast moving type of medical problem, those tests that were performed a month or three months ago, will be the same. 
Tried and true this happens for a couple of reasons. First of all, doctors, especially "Specialist" tend to be arrogant, and feel they do the "best" surgery, best diagnosing; they are "best" at everything. So, never would someone that highly educated and knowledgeable take the word from another physician or whomever did their testing. Or it is something much more tangible than their ego. It is their "hip-pockets." Doctors, especially those in very highly specialized fields DO get "perks" from certain labs, MRI companies, certain pharmaceutical companies, from those highly regarded business that make medical equipment, such as pain pumps, knee and joint prostheses, and others. 

Now the first things that may jump into your head is that physicians cannot take "bribes", or money from "any" business such as that. Plus, they are not supposed to "favor" one company over the other when it comes to medications, medical equipment, and so on. Yet, how many times have you set in your physicians office, and the pharmaceutical representatives are there. Either they get to go back while you are sitting there waiting on your own appointment. Or they drop off "goodies", possibly even samples of medications. I know for a fact one of my Orthopedic Surgeons was taken out to dinners, or given other items of use, because he was using their prosthesis, over another company's. Now, it is NOT against a code of moral ethics for a physician to go out and dine with these representatives, or get pens, pencils, all kinds of office supplies from them, and accept certain types of goodies brought in for holidays and so on. But, of course it is certainly illegal on a moral, ethical, and the law side of money to change hands or preferential treatment from entities such as these. Then again, sometimes you have to wonder where some doctors get the money to drive very expensive vehicles, unless they are like the so-called "Opthamological Surgeon Specialist" that turned out to be the biggest ass, and the outstanding "quack" I've ever had the chance to see. NEVER, and I mean NEVER will I, or anyone I can convince NOT to see this so called eye specialist. He was as far as I'm concerned gone out of his mind. All the while he was raking in the money. When you can have an office of more than 50 personnel, and your "office" takes up an entire floor in an office building in Dallas, plus the staff was almost choreographed to play their roles in what seemed more like a "movie production" than a specialists office, you had better turn, run and never look back. 

So, all that said, I feel this movie and I hope more to come in the near future will truly bring out the very "real" challenges patients chronically ill and/or with chronic pain go through to get the help they need. For the most part, I know speaking for myself, I am flying by the "seat of my pants" when it comes to new symptoms that concern me, which physician should I go to for a particular new symptom, or should I first do enough of my own research to help speed up the process of me feeling better. Changes are fairly good, that I am better off trying to research my own symptoms, changes, differences that I'm experiencing BEFORE traipsing down to my doctors office. For one, I feel if I don't go well prepared, with a list of symptoms, and some information about what research I've done to possibly explain what is happening; I wind up not getting my "dime's worth" into my physician, he mumbles a few sentences, listens to my heart and lungs, and then off into the wild blue yonder he flies out, leaving me more confused than when I came in, with some "new" medication that is probably not going to be helpful, and I am as just in the dark as before, but worse. Again I've had my physician NOT listen, NOT hear, and NOT diagnose my problem. I go home upset, mad, and ready to rip someone's head off (not literally), because I feel cheated by the medical system again. 

I happen to be fortunate enough for the moment, because it can change in any given time frame of having a Primary Care Physician (PCP) that is young enough, extremely intelligent enough, and likes the fact that I DO research first, then bring what I feel maybe useful to him in order to find out what is going on with me. So, he LIKES informed patients. My Rheumatologist is definitely the same, if not more so. He LOVES the fact I have done research on medications, on the RA, paid attention and written notes about my symptoms, and come in as well informed patient, that can understand exactly what he is suggesting. Often times when I bring something in, say about new medications. More times that not will he be on the same page as I am. I leave there with what I felt might be the answer. And he seems grateful to have a patient willing to keep tract and give him as much information as I can. It is a win-win situation for both physician and patient. 

So, as I close this "chapter" even though I have only seem the "trailers" of Cake so far, I believe it is a giant step forward in the progress of educating everyone about chronic pain and chronic illnesses. It is a look into the human soul and just what a toll these illnesses take on us. My hopes are this movie will open the doors in Hollywood and be the start of something much bigger. If this film and others that could follow can help to educate all of us, to understand that something "chronic" means just that. It is "here" to stay, each moment, each minute, each hour, day, year and beyond with us. So, those that live with these many costly illnesses, the toll it takes on making some of us no longer able to do our jobs, take care of families, have our own "normalcy" of like back, and the cost on our nation alone in medical bills and lost wages. "Chronic Pain" all too often completely destroys the quality of life for the patient, spouses, and families, causing divorces, and destroys what many of us have built our life upon. 

My hopes are that you also will see the movie, and respond to it. We should let it be known that this should be the start of a much larger look into more and more "true to life" film portraying a life "taken" over by pain and suffering. 




 p.s. by the way the CEO of the Arthritis Foundation has endorsed this film and has told her feelings about it depicting all that patients deal with.
 

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