Advocacy, Ambassador, Activist, Volunteer - All out of a Desire, Passion and Compassion to help others... and the heart of my own dilemma this Annual Arthritis Summit 2015

I have something to share with my dear "Online" and "Off Line" Friends. Each of you have been and continue to be a true inspiration to me. Whether it is about something I write, my books, poetry, my blog, my pursuits as a patient with several chronic illnesses and chronic pain issues, wife, now also a caretaker for Jim after the accident, that will be a year ago March 26th. It seems impossible but most of you recall I was actually at the Arthritis Foundation's Summit on Capitol Hill last year, when I got the "call" that everyone dreads... an accident, all the way back in Dallas, my husband. Basically, "ran over" by an 18--wheel tractor trailer from behind. I am STILL and always WILL BE EXTREMELY THANKFUL for the Kindness, the compassion, the friendship, and the honor that all of the ones there at the Summit, as well as those in the Foundation who helped me get aboard a plane in DC just hours later, headed back to Dallas, to Baylor Hospital. The outcome I was not sure of, and I was so very blessed by those who directly helped me that fateful day. Chris Nieto​ was and still is an angel. He helped me with everything from taking all of the information down from the Emergency Room Trauma doctors, to making sure Laura helped to get me board the plane, and he happened to have been flying back to Dallas himself, so he, Serena, and others from the Summit gave me such a "foundation" to stand upon, as my entire world literally crashed down around me. I look back, and I crumbled to the floor as my daughter told me about the wreck, and Chris began to read off the "numerous" injuries Jim sustained. From almost EVERY RIB broken, to his back basically "broken in two" - - from C-7 through T-7 back surgery done within hours of the accident. A concussion, fracture of the shoulder, possibly a leg, a "nick" in the aorta, and the list just read on and on.... Anyway, all of 2014, we spent either with him in the hospital and the rehab hospital over 3 months. Then several more months of going back and forth several times weekly for rehab... and just a score of doctors visits... plus of course all of the "red tape" that yet has not been settled...

So, moving forward... I was HONORED to be given such an incredible title in my advocacy work, as "Platinum Ambassador" for the Arthritis Foundation. I spent time when I was not either ill myself, or having all of my teeth pulled, and replaced, or any number of other things, to be able to attend the "conference" meetings, make some relationships with some of our Congress People, and do all I could with a true passion to HELP ALL of those out there like myself, suffering from these dreadful diseases....

After my DC visit in 2014, I was so totally elated and felt so privileged to perform one of my "long time" dreams, and that is to "stand on the White house steps" and TELL MY STORY! Well, that dream came true last year in March, 2014. My plans were also to BE BACK  this year in just two weeks, and again be able to STAND with such an INCREDIBLE Foundation as the Arthritis Foundation, and be a part of their wonderful advocates!. When I found out at the very end of 2014 in December or so, that I WOULD BE ABLE TO GO back to DC I was on "cloud ninety nine"!  Of course, my health has waxed and waned, I still have yet to COMPLETE my entire ordeal of these "mini dental pins" in my bottom dentures... due to all kinds of complications, including an "oral-maxillary communication" in other words a "hole" between my mouth and my sinus cavity... and infections etc... yet, I had bought new boots, had all of my clothes lined up, my "ducks in a row" all ready to go back to DC in two weeks!!!

Well, these illnesses "don't care"... they don't care if YOU have PLANS... they don't care if you have to "miss" something you so want to do, they don't care what else is going on in your life...  if "they" decide you will be sick, then sick it is... YES, you can try and push through it, you can try to ignore a flare, or not deal with medications, or not rest, and just do as you wish. But, when it is time for a chronic illness/pain issue arises, it WILL put you DOWN... and you have no choice... you cancel parties, plans, dinners, you don't celebrate holidays when you should, or you miss birthday plans... as we speak of often in the "spoon theory"... you have so many, and you can "borrow" a few... but when there are none, there are none.... thus... due to my own personal bout with several health issues due to the RA, Lupus, Sjogren's, and so forth, my "health" has been not so great, and I've been trying my best to "ignore" the ugly truth... but much to my disappointment... I am still not well, I probably am going to go through some major medication changes, now I am FINALLY going to have the bottom dentures pinned... after all these months of waiting... and not being able to eat much, or if I talk much, the bottom ones slip and slide around thus, I have heck even keeping the top ones from slipping also... my pain level has jumped through the roof. We are not sure if it is lower back disc compression fractures due to the osteoporosis, the RA and my hips, other leg, nerve issues, or what... plus I have just all of a sudden soared in having several Lupus Migraines... they have gotten so bad... and with Jim not able to drive, and his own medical issues with the  Paraplegia causing bad balance problems, where he can't bend forward, or he would fall, he can't go down stairs without help, there are just many things we take for granted daily, that after something like his accident, are things that are just not possible, no matter how small they may seem. He is not able to get things if they are pushed back far into the Fridge, or in a cabinet. He can't climb up to get things out of our very top cabinets... and so that makes it also very difficult for me to be gone for several days... we thought we had that all taken care of, and that person now is having some other family medical issues, thus I don't have them to come and help him out while I am gone, as we thought. So, between all of the "little things", the big "elephant" in the room of course is... I with very deep sorrow and disappointment, must bow down and not go physically to the Arthritis Summit this year. It took me over a week of crying, kicking myself, feeling guilty, being mad, sad, and all of the other billion emotions wrapped around this for me to just have to admit that I am just not physically able, and with family things also, to go this year. I will of course be ON BOARD 500% as and "E-Summit" Attendee... and PLEASE ALL OF YOU take a moment, and go to the link I have provided several times and send in your letter. They WILL BE HAND DELIVERED to YOUR Representative. So, it is vital you get to say your own personal things about these dreadful and unacceptable diseases. I hope to be able to "pinch" myself, and wake up from this nightmare... but no - not a nightmare... it is just the truth and I had to face it... one thing I have "gleaned" (honestly many) but one thing that I have learned about my personal advocacy, activist, volunteer and ambassador work, is that it comes from A VERY DEEP PASSION AND DRIVE and it just as important if not MORE IMPORTANT than a "regular job" People that do this type of thing do it from their hearts, minds and spirits.... we "live" to help others... no "glory"... no "personal gain" honestly... but out of the sheer passion of knowing WE HELPED - WE GAVE VOICE to a patient, or patients... that is WHY MOST of us do this... out of the desire, love and compassion to help others feel better, and live a better quality of life....

Rhia

Please see this URL to SEND IN YOUR LETTERS!!!

http://www.arthritis.org/advocate/advocacy-summit/virtual-summit/letters.php?utm_source=LetterWriter&utm_medium=email&utm_term=Advocacy&utm_content=body&utm_campaign=031115

 

FDA APPROVES 1ST "Biosimilar"! Great News!

http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm436648.htm

This is just awesome news! Although this particular one is not related to Autoimmune illness, it is definitely a prosperous beginning to getting "biosimilars" into other types of illnesses, including RA, Sjogren's, Lupus and many of the other 100's of Autoimmune illnesses.

Here is another link that gives you a huge amount of information on Biosimilars. They are NOT a "generic" form of other "Name brand" medications. I am sure many of us are thinking this. But this website below DOES tell all about them, all of the huge non-profits like the AF, IFAA, AARDA, Lupus Foundation and many more that are supporting this effort.

This can mean many more of us that have these illnesses be able to have a more "affordable" type of medication in the near future.

So, take a few moments to look over the website, and also the link above is the news press release for "ZARXIO"....


http://www.biosimsafety.org/pbsamembers/

Reminders of How you, A loved One, Or Someone Else you Know maybe able to get assistance with medications & other needs for Arthritis

The Arthritis Foundation has really put their website in the spotlight and now includes LOTS of great information for patients, families, caretakers, and friends or advocates. From giving you places to get help with medications, names of medications, and financial aid that may help to play a huge role in a patients welfare especially when it comes to any type of Arthritis, Rheumatoid Arthritis, Juvenile Arthritis and so forth. I wanted to list a few of the URL pages with this information on them for those of you who may not know they exist. Rather than combing through the internet and searching for possible assistance, they really have put together some wonderful lists to help with these issues.

These are but a few of the pages from their site that can help in so many ways. Be sure to check out all of the different pages, information, how you can help yourself, a caretaker, family, friends, ... from medications, to healthy eating, exercising, doctors, tests, and more... this site really has a huge amount of great information for everyone. 

http://www.arthritistoday.org/arthritis-treatment/getting-medical-care/paying-for-care/drug-specific-patient-assistance-programs.php

Drug Specific Medical Care above - like help from Pharmaceutical companies.

Above can be actually getting the medications needed from the Pharmaceutical companies, or help with a high co-pay and so forth.

http://www.arthritistoday.org/arthritis-treatment/getting-medical-care/paying-for-care/help-paying-for-your-medications.php

Above is another list of places that you may find financial aid for medications, or possibly to see doctors, and other types of assistance.

http://www.arthritistoday.org/arthritis-treatment/getting-medical-care/paying-for-care/help-paying-for-medicare-and-prescriptions.php

Above you will find some state agencies and/or local & even possibly Federal assistance for paying for your Medicare Part B and/or a reduction in the cost you pay for co-pays on prescriptions.


http://www.arthritistoday.org/arthritis-treatment/medications/drug-guide/

Above you can go to this URL and find the names and information on the medications themselves for arthritis and arthritis related illnesses.

http://www.arthritistoday.org/tools-and-resources/tools/lab-test-guide.php

Above is where you can find out about lab work you may have done, and what some of those tests are for, and what some of them might be in order to understand more about what the physicians are looking for when they do lab work.


http://www.arthritistoday.org/about-arthritis/arthritis-and-your-health/

Above this link takes you to where you can find out more on arthritis, symptoms, how it effects your other body parts, other illnesses that can often be related to arthritis, and how you can help to keep your own body more healthy. Lots of tips on the site for everything, from eating well, to the proper types of exercise, and how to do what you can to help yourself maintain a "quality of life".

http://www.arthritis.org/

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.
 

Advocacy Summit | Arthritis Foundation

I have already put this in my blog! But wanted to post again... This is such a huge honor and privilege and I am so psyched!!!!

Advocacy Summit | Arthritis Foundation

And then "the Juvenile Arthritis Camp" for 2015 -

http://www.kidsgetarthritistoo.org/meet-other-families/2015-juvenile-arthritis-conference/2015-ja-conference.php