Showing posts with label osteoarthritis. Show all posts
Showing posts with label osteoarthritis. Show all posts

Wednesday, May 13, 2015

The Arthritis Foundation Being an Ambassador & Just how incredible of a Foundation it is.

I've talked a great deal here on my blog, as well as on Facebook, in emails to friends and family, along with spreading the word here in my hometown, and even in our local newspaper, I've had a couple of articles published.

I know at times when we think "non-profit", charity organization, or other ways they are often referred to, it gives the idea that they "collect money through donations" and use those to help others, possibly for some research, and so forth.

Actually, that is not all that the Arthritis Foundation does at all. They are an incredible Foundation, created by some fantastic people, that have changed the face of arthritis throughout the world. They bring "patients" and "caretakers", even our youngest of patients the kids with Juvenile Rheumatoid Arthritis, and have them involved in the annual "Summit on the Hill" each March on Capitol Hill in D.C. in order to have more funds, more awareness, and more support through Caucus' and those Representatives that can help to make research, awareness, and also others types of assistance available for patients, families and caretakers.

They are a true leader when it comes to "arthritis". Whether it be Rheumatoid Arthritis, Osteoarthritis, and Juvenile RA, and/or the complications of those to a standstill. They feel that anyone that has to suffer from these horrid diseases, that can't get the medications and care they need in order to have a normal life, as being totally not acceptable in any shape or form.

They are warriors in the battle of these horrid illnesses and diseases. They have made an impact through not only the Federal Levels of government, but also in our States legislation to chance things so that "we" as patients can have affordable medications, access to the proper care, making sure that "generic" medications are virtually the same as the original name brands.

Not only do they hold the annual Summit each year and see each and every Senator/staff and/or Representatives, they have also changed things that were very wrong with insurance coverage for people with these illnesses, and helped to stop the "insurance" companies from telling the doctors what or what they cannot give to their own patients.

They have also along with the Department of Defense started a program years back, where our women and men that come out of duty home, all too often to suffer from some type of arthritis and/or autoimmune illness, have a "face and name" in that respect. There are studies about why so often a "well" soldier comes in from a stent of duty, only to realize they have been "taken down" by some type of arthritic ailment. The chances of that grows higher each year, with troops coming home to be in much more pain and suffering than to be in the wars.

The "AF" Arthritis Foundation provides dozens of opportunities for those who wish to become a "voice" by being able to become an Ambassador, help with other volunteer efforts, write letters and emails to your representatives, attend different events, such as the "Jingle Bell Run" and the latest which is the annual "Walk for Arthritis".

Over and above all of those, they also have events for those kids with Juvenile RA. They have week long camps, are also there at times to speak to the Congress, and help in some many ways when it comes to fighting for a cure for these diseases.

So, whether you are able to give a few hours of your time to help out, send out emails, hand out information to others in your community, do a local fundraiser, get the word out like this through blog postings, social media, your local government, newspapers,attend a "Town Hall Meeting", or however you can give of your time, all of those things and so much more are crucial to "solve the mysteries" of these life altering diseases.

Please go to:



                      and be a "Champion of YES!"

I will post more about my own "Ambassador" role, and in fact I was made a "Platinum Ambassador for 2014! Which is another one of those incredible honors bestowed on those that give of themselves and of their time to make a difference for "every one"!

 Below explains more in detail of just how crucial it is to be a "Champion of Yes!

 

Champion of Yes.
Our Voice Resonates Loud and Clear
All-In
We are all driven by a passion and commitment to work that goes beyond the call of duty.
Expert
We continually strengthen our longstanding track record of leadership, and apply our authority to initiatives that are escalating technological, medical and scientific advancements every day.
Bold
We are tenaciously and aggressively attacking arthritis and its effects, with a loud voice and loyal persistence that will never back down.
Ever Present
We are here for the long haul —when, where and how people need us — maintaining relevance in every field and facet that affects arthritis.
Brave
Together, in the face of darkness, we possess an optimistic outlook and winning spirit that courageously leads us.
arthritis.org
Arthritis is a thief. People with arthritis know this full well. It steals everyday joys and long- term dreams. It isolates and ostracizes.
It is painful. It induces a spirit of No.

As people close to the Arthritis Foundation, we know that it doesn’t have to be this way. We are in a unique place of authority and action, with the purpose of finding a cure, but also fighting for the everyday victories.
We Exist to Conquer Arthritis
The Arthritis Foundation is focused on finding a cure and championing the fight against arthritis with life-changing information, advocacy, science and community.
Plan for Yes
We chart the course for the arthritis community, helping families develop personalized plans for saying Yes — day after day.

 

Sunday, March 22, 2015

I am with you and the Arthritis Foundation in spirit and in thoughts and well wishes!!!

Since TOMORROW is the HUGE "Summit on Capitol Hill" Day for the Arthritis Foundation. This is just one of the many "Annual" events AF puts on throughout the year. There is the "Jingle-Bell Run", the "camp" for the Juvenile Arthritis Patients, there are also other walks that are done around the various states. In fact here in my part of Texas, we will be having a get together in April! I am so hoping to be able to go! So, since I am sure there are many people out there that are "aware" of the Arthritis Foundation, and that they are a non-profit for Osteoarthritis and Rheumatoid Arthritis, they do any and every thing imaginable to HELP US as Patients, Caregivers, Family Members, Friends, and those that have children with JRA or JA/Still's Disease. From being up front and personal with our Nation's Congress, the AF is always reaching out to help with some bills, laws, and even the different states platforms when it comes to patients with these illnesses. AF addresses the disparities involved, trying to find ways to get more researchers, more medications, more educated physicians, nurses and all medical professionals, and also work on some things with the DOD which involves our own troops that come home all too often with some type of "Arthritic" illness that takes its toll on their lives state side. The AF brings "patients" in as Advocates, and Ambassadors, takes them to Capitol Hill annually about this time in March each year, to visit the different Representatives in our areas, and "educate" them about our illnesses. We also tell them how they can help immensely by "supporting" the Arthritis Caucus or even being a member of it. We talk to them about the "real day to day" hellish at times living we face. We explain how things need to change in order for us to be more able to work, to take care of us, our families, and participate in many activities, but without the proper treatment EARLY in the game, and a proper well educated physician that knows his or her stuff, we often wind up totally disabled, totally unable to take care of ourselves, or much of our things, and then the quality of our lives are painful to not just us, but spouses, children, family and friends.... OF course we all totally understand that these types of medical ideas - whether a research study or clinical trial, maybe a drug that is needing approval from the FDA, thus possibly more of a wait to get it on the market, the VAST
arena" of prices on these "new medications" and how can patients possibly afford them? When you are speaking of a medication, one injected at home weekly, at the "cost of" $4,000.00 a MONTH, plus insurance either will NOT PAY any of it, OR the "co-pay" you would owe is so astronomical there is no way you can even pay that. Then the money it takes to get a research project off the ground. Researchers may spend years and years on ONE idea, ONE cure, ONE reason... for the illness in the first place. Then that may hit a wall, and after all the money and time, nothing comes of it anyway.
So, in front of the scenes and behind the scenes the Arthritis Foundation has brought and continues to bring patients together, in a bond, a purpose, and driven to "change" what is now just purely unacceptable. As I have thought of each of you all day long today, knowing that each of you are there and are "taking my place" to get the word out, to get Congress to really "listen" and act! I feel this will be a very incredible Summit this year and MANY things will start to be accomplished over the next few days.
My prayers, thoughts and well wishes to all of you there. PLEASE POST, email, tweet and so forth any and everything you can if you get a chance! I will be closely watching Twitter, FB, and the others, watching for any thing that may get posted. smile emoticon So, if you don't have time send the pics and so forth to me, and I will definitely be here, trying to do all I can to support the AF and all of you..... my well wishes and may all of you stay warm, healthy, and safe! Rhia Steele


http://www.arthritis.org/advocate/advocacy-summit/virtual-summit/

Thursday, March 12, 2015

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
 

Wednesday, March 4, 2015

YOUR VOICE on Capitol Hill at the "Virtual Summit" can be heard! YOU WILL BE HEARD! E-Advocacy and more for the Arthritis Foundation

Okay Guys and Gals!!! I am asking for YOUR Participation in this EXTREMELY IMPORTANT situation. As most of you probably know I have made "Platinum Ambassador" for the Arthritis Foundation for 2014-15. So, I am headed for Washington D.C. March 22, through March 24-25th... for the Annual "Summit on the Hill" by the AF. We will be going personally to Capitol Hill to both the Senate and House of Representatives, to meet with as many of them as we can. If we don't get to meet personally with them, we still usually meet with their "health legislative" assistants, and other staff that can help to deliver our information and message. It is IMPERATIVE THOUGH that ALL OF YOU that can't be there, really and truly KNOW YOUR VOICE COUNTS!!! I know many of us have become disenchanted with "Congress" - our Senators and Representatives for many reasons. Yet, I know PERSONALLY FOR a FACT that YOUR VOICE DOES MATTER!!! I have seen the results of what letters, phone calls, messages, and meetings can do for all of us in the matter of Arthritis, whether osteoarthritis, RA, Juvenile RA, Still's Disease PLUS ALL of our other "Autoimmune" and other health issues. BUT, WE need YOU to also raise your voice and be heard. We will be DELIVERING YOUR LETTERS PERSONALLY to the Senators and Representatives that you can follow from instructions below, and fill in your personal parts, tell your story also, or however you want to personalize it. The Arthritis Foundation NEEDS "Virtual SUMMIT people" and that is YOU. Even if you are going to DC, still please use this letter to be given to your Senators, and Representatives. ONE VOICE can MOVE MOUNTAINS! I have witnessed it, and continue to truly believe we do matter. BUT, if you DON'T contact them, then they do not know your situation and how YOU feel. So, I am posting here, on my blog, on my Pinterest, on my Instagram, on Twitter, everywhere I can about how to be a part of this critical movement! This is for ALL of us, with these horrible illnesses, that need help with getting good physicians, the MEDICATIONS WE NEED and making them AFFORDABLE FOR ALL! This is about those in our nation, many of our Armed Forces Come home with arthritis problems or develop them..... and many of our youngest of this nation are also patients, with Juvenile Arthritis. I want to urge each of you to take a bit of time and send your letters. I am including all of the instructions in an attachment and at the URL that is provided. If you have questions feel free to ask me, either through Facebook, or through message or email me. If you would like me to help or if you have a message you want me to take your letters with me, and I will make sure they get delivered. 

Here is your link to sign on to be an "E-Advocate" for the Arthritis Foundation. This gives you a voice via emails and so forth so you can be heard at the National Congressional Level. It is not time consuming, you don't even have to leave the house, but this is a way to be able to speak up and be heard by your Congressional Leaders that you voted in. Let them know how you feel, and what you feel is good for yourself and the nation when it comes to Arthritis, RA, Osteoarthritis, and ALL of the other diseases that are often in tandum with arthritic illnesses. It takes a few moments to sign up and be heard for the rest of your life by those who can help to make things better in the realms of your health. 

http://www.arthritis.org/ad…/sign-up-to-be-an-e-advocate.php


Then this is how you can "attend" the Annual Summit on the Hill as a member of the "Virtual Summit"... this link provides you with a sample letter that you can also personalize, add your picture, and tell your story about your health issues when it comes to arthritis, whether a patient, caretaker, family member, or just want to be a "voice" to help others.

 http://www.arthritis.org/.../virtual-summit/letters.php

 

You can download the "letter" from that link, and all of the instructions are there so you can send it back via email to those that will be taking YOUR letters directly to Congress. WE are giving a VOICE to YOU, even if you can't attend... as I said, if you have questions, need help, or however I can assist you, feel free to email, message me, or post and I will be more than happy to help out in any way I can.

 ALSO!!! SOCIAL MEDIA is a HUGE way to get your messages across. MANY of our Congressional Members have Facebook pages, Twitter, Instagrams, and so forth. That is another way you can also make contact with them, so be sure to also look that up. I have both of my Senators and my Representatives Facebook pages, and I've sent Tweets to them and emails also from their websites. Sign up for their newsletters. That is a great way to find out how to contact them also.

 

Here you go!!! "Proof" is in the "pudding"!!! this study is compelling to show that a few "Tweets" or other type of Social Media use can capture your Leaders Attention on a Subject ...

  http://connectivity.cqrollcall.com/just-a-handful-of.../  




Saturday, December 6, 2014

It is Official - I am a "Platinum Ambassador" for the Arthritis Foundation!!!

I was just totally on Cloud Nine yesterday afternoon! I received an email from someone I've became quite good friends with over the last about 9 months or so. She emailed to tell me that I had qualified for the "Platinum" Ambassador Activist, which is an elite group of Advocates!

I had tried to spend lots of time this past nine months or so, putting myself into the throws of Advocacy, Activism, Ambassadorship, .... volunteering to keep me mine as clear of "brain fog" as possible! Plus I also used my "voice" and Advocacy work to help me not think about the horrid event on March 26th 2014.

It has been a very long way to get this far from Jim's wreck, and have some type of "normalcy" to our lives. We still have a great deal more to go, and our "normal" will never be what we considered a "normal day" again. But, through the pain, tears, the smiles, and frowns, and all that has been in between. Each day has been one step, one moment, one hour, one day, at a time.

Yet, we are blessed that as bad as it really is, it could have been much worse. He can walk, with a cane. Not for very long right now. But, as time goes by, we do have hope still that much of the pain, the stiffness, the ability to be "whole" again.

So, through the "window" pane of activism, and my role of becoming an Ambassador for the Arthritis Foundation (now to find out I made Platinum) feels like an honored victory for myself, and my family.

My Mom and Jim are so very proud of me. They have witnessed all I've done to be as an Advocacy and Voice!

So, that means in March, I get to go back to Washington D.C.!!!!! The Annual Summit will be there again next March, and I'll have my "warm, fuzzy, walking boots ready! Last year I sure wished I had taken them, so this time they WILL BE with me!!!

So, that gives me another realm of my "voice" I will work on throughout 2015! There are lots of new things in store from the Arthritis Foundation, and I am elated to be a part of such a worthy organization.


I will keep you informed of course as time goes on. My blog will be a huge part of my voice, and now I have something else to put into my book, that I hope to finish up by the end of 2015!

http://www.arthritisfoundation.org

Wednesday, November 12, 2014

Ennis Daily News Local Paper Arthritis Foundation and Myself - Article

After lots of jumping through hoops due to out local paper having new people coming in, I got the article about myself and the Arthritis Foundation in and published this past weekend. I didn't realize it was printed, because "Rhia's Law" if it will happen, it will happen to me... I didn't get my paper thrown that one day, out of ALL days, that one day I didn't get the paper as usual. That NEVER happens usually....


Anyway. I will thrilled to see it, and also thrilled to hear one friend of the family who told us about it this morning at the doctor's office, which is how I found out that it had been published!!!

I went straight to the paper and picked up a copy, and when I went into the market, I had several people stop me and say they had seen it in the paper over the weekend!!!!! Which made it even better!!!!!

I am kind of upset that they "shortened" it a bit, because it was longer. But, I think due to the fact he had left it out, and it had not been published when I first sent it to them, he made sure he got it in immediately.

Again, I owe so much to the Arthritis Foundation and especially to Laura Keivel, who has truly made me feel that I have found "my voice" in being an Ambassador for the Foundation. "The Lord Willing and the Creek Don't Rise" as the saying goes, I hope to be back in DC, for the Annual 2015 Summit on the Hill, in March again. If at all possible I plan to be there every year my body, my mind, my spirit, and everything involved allows me to...

Tuesday, November 4, 2014

Be there With Your "Jingle Bells On"!!!!!!

Be sure to Check out other locations around the nation for other cities that are having the "Jingle Bell Run".... this is Nationwide!!! I know San Antonio, Austin and I believe Houston will have one here in TX, and possibly more... but they are sponsored all around the Nation!!!!

Here is the link to find out where the closest is to you!!!

Sunday, September 14, 2014

Trying to find My Way Back - to What A "Normal" Autoimmune Diseased Life Should Be...


I began this as a post on Facebook early this morning, Sept. 2, 2014. Yet, after writing on it for about a half hour or more, getting up to check on the dog, and my head pounding... it dawned on me, "Get your other stuff caught up... i.e. make some sugar free jello, make the chocolate fudge cake for the weekend, getting the "stuffed peppers" I bought the stuff to make on the day when it was supposed to be cooling down; thus this morning seemed to be the best morning. I had thought about going out to wash my car. I thought if I did maybe rather than continue to "test" and tease us, it would actually rain. Well, so far I was wrong, as it all has done lately. It seems the weather has made many of us hurt terribly. Physicians (some physicians) want to tell us we are full of bull when we say that the "weather" doesn't effect our lives as far as our pain, joints, headaches, and so forth. I know beyond a doubt that from the barometric pressure, to "cool fronts', the humidity, rain, sleet, snow, thunderstorms, you name it, many will more definitely have an effect on chronic pain illnesses, joint issues, and many of the "2nd, 3rd, 4th, 5th and so on, disease that follow right along with the primary diagnosis. I had been concerned lately over "Shingles". I have seen way too many of my online friends, as well as close kin folks and friend that have had a breakout of shingles. I found articles stating people that have never had them, have well over 2 to 1 (50%) chance of having shingles if you have an autoimmune illness. I've been concerned over my illnesses because I feel I can't quite find a place of "remission" in any of them. I am on the medications, I am trying to do everything I can correctly, rest, eat well (ah, that one is hard with the teeth issues I have)           This next paragraph or paragraphs if you would like to say below are what I began on Facebook. I copied what I had already typed on and then decided I am going to "stick" to my word. I am going to post the bulk of the post here, then just put a small snippet in FB, with a link back to it here in my Blog. Blogger has made some changes, some good, giving you more options and other than just add chaos & confusion. I was hoping FM would slow down a bit and give people time to catch up. Sure many of us are "hooked" on line 24/7/365. But, all too often we don't have time to sit around and figure out the "new" things on FB, Blogger, and the numerous other sites we "belong" to. It reminds me of all of the stores I frequent here in my home town. About the time you learn how to use your markets check out debit system,  they bring in one that is "better, bigger, more secure" and also confuses the hell out of me. Then you run over to your pharmacy, same thing, now they handle the entire way you check out totally different. Now try to go shopping two or three department stores! Everyone one of them, either has a new "card" for you to sign up and and get 20% discount. Yes, the first time, and then after that, all you get an email box full of junk from them daily. Then they have all of these mark-downs with an "extra 20% off" at the register, and you either have your calculator out, they might be nice and have a "chart" up on the rack telling you what the cost will be after the "extra" is taken off at the register. Anyway, when you are already dealing in trying to keep your sanity with a brain fog that seems to only be getting worse each week; the lists that have now become the lists of lists you need to take care of and LORD forbid I not forget something for someone, a doctors appointment, or even something as trivial as getting "change for the coke machine, or picking up a drink, some kind of soda that if I don't, no one else would think about how thirsty I get when I am having to drive anywhere, and in fact I cannot walk through a huge store like a Wally World's, unless I stop by a front counter and pick up a drink to sip on while I shop.                                                                                                                 

I've been telling this now for awhile to my family and friends. Not only had my physical  issues change, I seem to have slowed down to a crawl at times. My brain cannot function, I feel it takes me forever to get ready, then I look down and there is always something else that needed to be done, or I forgot to put on "the list" .... heck even times I do well to remember the name of a room, or the name of what is in that room! Store names, my own phone number, it seems that may "brain fog" add          


I thought I would post this on FB at first, then changed my mind. I is a combination of several days posts, I began days ago. I changed my mind and want to put it here first, then really tell about these feelings I have on my blog; then share them that way. I will put this on my blog, but it has been on my mind now since I went to Winstar last weekend with my Mom. As most of you know, due to all of my extensive sharing, I LOST ALL of my Teeth to Sjƶgren's within a year. It sounds almost impossible, and I know from everything I've read and been told, that they "damage" that could not been seen probably had been going on since I was first diagnosed with Lupus, Sjƶgren's, Raynauds, RA... and who knows what else. That was back in about 2009-10 when the very first real "blood work" was done, and the doctor took ALL of my years of symptoms seriously to put them together. When he did, I was sent immediately to a Rheumatologist. This gentleman, a Rheumatologist no doubt for many, many years, still even used "gold injections" on occasion on patients. But, he was far from a dummy, and further he end  around the corner there in his office to have blood drawn, urine and he did even a more extensive workup on me. But even that first day, just by an examination of my toes, fingers, wrists, thumbs, feet... he "felt" and the saw the damage. He also saw that I had Raynaud's immediately, and I had an "hyper-extension of many of my joints, almost like being double jointed. Even after that first visit, I was so upset that it had probably been going on for years and years.. my Xrays showed my toes and finger joints being bad already, so none of this happened over night, and not one doctor until my new PCP at the time, could ever put ALL of my symptoms together. It was somewhat almost a relief, yet it also very scary also, No telling what had really come of "damage" not detected since it might have been years this was going on, yet no one could explain the severe migraines, the extreme tiredness, the not being able to "multi-task" as I once could, having just about every joint either already been injected or had surgery or even been totally replaced before the age of 50! No one could truly explain how someone, like myself, a very fit woman, (walked, ate properly, exercised daily, kept my weight down, and yet I had a heart attack at 40 years old and another at 50! Nothing made sense, yet no doctor could put it all together either.. what made my new PCP at the time think "autoimmune issues" I don't know... Maybe a conversation I had with him about me thinking I had "Lupus". Anyway something finally "clicked"... thus here I am today, far into the realms of autoimmune illnesses... and the latest issues the Sjƶgren's... so here I am now 54 (since Feb 15th) ! battling a battle I thought I would never have... losing my teeth and having dentures... and won't hold until the "mini implants can go in, which will be another 60 days or more. I am not going to lie They are a pain in the butt, or mouth I guess. They seem odd, too much "junk" in your mouth, a pain to have to clean, then put in each morning, then have to brush them, clean my mouth and put them in, then out they come at night... you cannot sleep in them. And eating in them for now is almost impossible. Even my "bite" pattern is completely different, which I am thrilled about, because they are "pretty and I wanted pretty teeth all my life, just never realized they would have to be "fake" and not my real ones. But, I honestly felt like once I got these new teeth in they would "fill in" where I had lost many teeth, which in turn would fill out my lips more, my bottom cheeks and lines around my mouth. I was hoping to "see" a bit different maybe even more youthful (by a few years) me.... but guess what? Nope.... did not make that change nearly as much as that as I had so hoped it would. I just was so disappointed, because I did not realize with the scars from the accident years ago, and the two small scars from my fall right around my mouth. I keep thinking, well, like any other woman, there has to be a way to "tighten" up that skin, or "bleach" out those darkened scars. I even went so far as to  begin looking today and am going to research some of these new facial creams out on the market to see which ones really work, and which ones charge a fortune, yet do nothing. I come more and more to realize I must take even better care of my skin. I have always pretty well used the proper things on my face and skin, lotions, I always take my makeup off at night, allow my skin to breathe and so forth. But, I pray quitting smoking will also reduce some of those lines around mouth. I see elderly women who probably smoked all their lives, and they have all of these deep seeded wrinkles around their mouth, and I always said I never wanted to do look that. But, dammit, when the teeth are out, I somewhat do and it upsets and embarrasses me to have anyone see what it truly looks like. I know we all age, some of us more gracefully than others... and depending on how well we have taken care of our bodies, minds and spirits makes a huge difference in the way you look as you age.

So does having these illnesses like Lupus, RA, Sjogren's age us faster? In all ways, in some ways.... what do you think????? I want to know how you feel about the subject and how many of you really take great care of the hair, skin, nails, including your face? If so, how and do you feel it is making a difference??

             

Saturday, August 16, 2014

New Post - My Letter to Congress in Regard to Arthritis, Autoimmune Illnesses, Medicare, Advantage Plans, Medicaid & Just How We Lack All We need to have a "Quality of Life"

I just completed this email below. I've been working on it for what seems like weeks. Due to ALL of the doctors visits, Jim going to Rehab twice weekly, my visits with my dentist to get my dentures (which I am already having "flare" issues I think with the Lupus, Sjogren's and RA) & numerous other things that have had to be taken care of, I've had to write this in between all of that. Finally, this morning around 1:30am I woke up needing a drink of water. Not realizing my foot was so "asleep" I got up and immediately went to the floor, with a very "twisted" left ankle, that left me in tears. I tried to go back to bed, but there was no use. So, at 4 am I got up, and decided to finish the email, and try and get some things done on the computer and on line that have had to be put on the back burner due to all else going on.

I am sharing the email with you. I am also sending it to my own House Representative, and to several others in the Federal Government that I feel can and may try to do something to help not just myself but ALL of us. Here is the email. My hopes are that YOU will write your own and also email it. The Arthritis Foundation sent out a newsletter about 10 days ago asking for us to all send in our stories to the email address that will be listed below this one I sent....

Good Afternoon to All In Congressional Representatives,

First of All, I want to thank, House Energy and Commerce Committee Chairman Fred Upton (R-MI) and Rep. Diana DeGette (D-CO) recently who announced a bi-partisan initiative, called the “21st Century Cures: A Call to Action”. This will certainly help to shed some new light on chronic illnesses, and especially those new diseases and illnesses, that at this time, like many types of Arthritis, (Rheumatoid, Osteoarthritis & Juvenile to name a few), that have NO cure at the time, little known about “why” those who all of a sudden get the diseases, why others may not, what medications we need in the future to either put these illnesses into remission, OR CURE them…. even STOP them before they ever do the severe damage they do to all of us suffering daily dealing with ALL of this issues these horrid illnesses bring into our lives. I hope many of our other Congressional members will stand beside HECC Chairman Mr. Fred Upton and Representative Diana DeGette and help to make this “Call to Action” a huge success for the thousands and hundreds of thousands suffering from various forms of Arthritis and Autoimmune Illnesses.

I am an “Arthritis Patient", that suffers from several various forms of autoimmune arthritis, as well as osteoarthritis. My list of diseases, illnesses and syndromes; Lupus, Rheumatoid Arthritis (RA), Sjƶgren’s, Pernicious Anemia, along with many issues brought on by thee illnesses, such as a heart attack at 40, severe pain, swelling stiffness that all have consumed my quality of life at times so much, that I feel the diseases rule my daily living. At the age of 15 I had my 1st knee surgery. At that time, they knew little about Juvenile Arthritis (JA), and the experts really did not know much about RA, and all of the other arthritic and autoimmune illnesses here in our nation. So, I went for years from one physician to another, trying to find out why all of my joints were “falling apart”… by the time I was 40, I had already had a left elbow repaired, a left shoulder repaired both knees had surgery at least twice back them, plus all of the other “symptoms” that most doctors at the time “blew off” especially when it came to women. They for the most part thought if I woman complained about aches and pains, she was either nuts, a hypochondriac, was having “female” issues, or was depressed. That was the huge one. The answer from most doctors to a woman with “mysterious” health issues was to determine they are depressed and fill you full of anti-depressants that did nothing for the “physical issues” that overwhelmed you. Still I would hear, even with the severe migraine headaches I had, the weakness, & still other signs and symptoms that should have never been looked over, but taken seriously.

In 2009 I FINALLY began to get some “answers” that made sense. I was not nuts, depressed, making it up, had female issues etc…. I had an “autoimmune issues or issues” that were ruining not only my joints, but also causing he severe fatigue, all of the joints and surgeries I was having… including both knees completely replaced and my right shoulder had to be replaced, along with a 4 level cervical surgery, for degenerated disc disease, and now my thumbs, fingers, toes, and ankles are “eaten up” by RA.

I’ve jumped through hoops and hoops for a very long while over my medications for these diseases. When you have a serious illness, and medications come out that may “halt” or at least give you a huge percentage of reprieve, so your quality of life comes back & your doctor feels the medication is necessary, there should be NO ONE at an insurance company, or throughout Medicare to tell your doctor differently. These ridiculous amounts of forms, paperwork, having to be put through 4 or more medications that DO NOT work before the ONE that does can even be considered, makes for a patient becoming worse by the day, paperwork and red tape costing precious doctors time, insurance people who have no clue what the entire thing is all about, and it is a vicious cycle of “stuff” in order to finally either get the medication you NEED OR be turned down, which really is asinine. I have been through I cannot tell you how many “pre-authorizations”, sending medical records, my doctor having to fill out forms which they should not have to, talking for literally hours on the phone trying to get to ONE PERSON who can “fix” the problem… and on the computer sending emails, sending messages, and as I said, all the while suffering from these horrid diseases that each day wreck my joints and my body a bit more each day. Any type of “autoimmune arthritis” such as RA, effects NOT JUST the joints. They are “ systemic” in nature & can effect the heart, lungs, kidneys, your hearing, your eyesight, your memory, your blood, your stomach, intestines, and so on. Just about every part of the body can be effected by any type of autoimmune illness, and can reek havoc in just a short time without proper care.

One of my horrors with one of these “Autoimmune Arthritic” diseases is Sjƶgrens. This is just one that they do not know nearly enough about. The doctors know it effects the mucous  membranes, which we have all over our bodies. Our mouth, which is how saliva is formed. It keeps our eyes moist, our intestines, and many “linings” in our organs have these types of member in them. Without them, organs like the inside of the mouth, dries out so badly, you cannot even speak, swallow, and the worse cause horrendous “dental caries” and other issues! Yet, I was not informed of just how quickly and how badly my teeth might be effected. I brushed daily, tried my best to chew sugarless gum, sipped on green tea all day long, and used the special toothpastes and all of the “remedies” for dry mouth. Yet, about a year ago, all of a sudden one evening we were eating dinner, and an entire back of a molar just fell off in my mouth! Within the course of 3 weeks I had 3 more teeth with break off at the gum line, or a half of a tooth break off. Then suddenly almost every tooth had either a large cavity in it, OR would crumble off on the edges, and I knew I had to get assistance quickly because I was losing all of my teeth, and in a time frame that was not going to allow me to wait even a month or two.

So, I began trying to find an “Oral Surgeon” and/or an Oral Surgeon/Maxillary surgeon that would take my Medicare Advantage Plan “Humana Insurance”. Well, I have yet to find ONE dentist, oral surgeon, and so forth that will take my insurance, EVEN THOUGH this problem is caused from a physical ILLNESS, NOT just regular dental caries. This is a serious matter, that I spent weeks and weeks calling dental offices, and researching online, first of all, WHAT I truly needed done, and a Dental Doctor that could do the procedure, and try to help me get some of it paid for by my Medicare Advantage Plan. I literally spent days and days sending emails, making phone calls, sending messages to dentists offices, all to no avail. In other words, (unless you have had to price these types of dentures called “mini implants”) I was going to have to cough up anywhere from $8,000.00 to some the charge $16,000.00! Now these are the dentists that have been through enough “training” to do certain types of “oral surgeries”, not the Physician Dentists, the true Oral and Maxillary Surgeons MD. I am sure when you look at the fact they usually put you under complete anesthetic in an operating room, and have several nurses and so on assisting them, they charge I would say $25,000.00 and UP! By the time you pay his services, a anesthesia doctor, all of the charges for an “outpatient” stay at a day surgery or hospital setting, I know from the extensive surgeries I’ve had due to all of these horrid, life altering chronic illnesses, it certainly would be a great deal more than $8,000.00. And “they” MAY be able to get my Medicare Advantage Plan to “pay”… with some pushing, pulling, red tape, & lots of time before I could have anything done, BUT the insurance ONLY PAYS 60% of any type of “dental” procedure no matter if the problem has been caused by an Illness! So, that means by the time you added up all of those “extra’s” involved where I would have to travel back and forth from Dallas many times to get it all done (so far I have had about 5 appointments to do all of this, and still have another at least 3 to go)… thus you are looking at the cost of gas, parking, and what if something happened after hours or a weekend? Like a dry socket, of which I had one, and also the start of an infection. But, I am within 5 minutes of my dentist/oral surgeon, thus I can be in there and getting care within an hour or two. And I am sure if something happened over the weekend that called for attention, he would go to the office and see me. Now, as it is, after an almost “deadly” car accident that my husband (who more or less has been my “caretaker” now for almost 10 years) last March. An 18-wheel tractor trailer “ran over” him from the back. Aa of now he is barely able to walk, much less drive anywhere. So, I have only myself to depend upon. My 2 children live 8 or more hours away, and my Mom, who I am “watching after” and helping out at times, can barely drive to the grocery store and back home that is about 10 blocks or less, thus there is NO way I could have been going to Dallas, being “put under” and driving myself home.

This part of my story only touches the “iceberg” of what I’ve had to endure. Lupus, RA, Sjƶgren’s, Raynaud’s, Osteoarthritis, Migraines, two heart attacks, one at the age of 40 (now they think the Lupus may have caused them, but that was years ago before I was diagnosed), plus all of the complications that go along with these illnesses. They can “attack” just about any part of the body, from the brain, to kidneys, to your heart and lungs, blood vessels, skin, and that list just goes on and on. As I have come to find out also, once they “finally diagnose” you, more than likely you have “several AI’s, causing the problems. (AI- Autoimmune diseases). We NEED HELP! WE NEED more RESEARCH, TRAINED PHYSICIANS ON THESE ILLNESSES, including DENTISTS, MORE MEDICATIONS, TO BE DIAGNOSED EARLY BEFORE all of your body is falling apart from them. We need to find out what causes these chronic illnesses, whether heredity, or caused by something later in life. The number of people (WOMEN rank MUCH HIGHER in getting any of these than men), grows each day. Some of us, like myself, may have been ill for many years, 10 years, or more BEFORE they finally get a doctor who takes the time to sit down, and put together the pieces of the puzzle of someone with one or more of these illnesses. But, doctors are overwhelmed, underpaid, and just do not have the time, even as specialists, like Rheumatologists, to really EXAMINE a patient, and there past medical issues to find out their patient is ill with a disease that could have been there for a decade or more, By the time mine were found out, I had already had both knees replaced (after several arthroscopic surgeries), an elbow surgery, arthroscopic surgery on both shoulders, my right one now replaced completely. I have osteoporosis, and mine is “severe” in range. I have the bones of someone 80 plus years old.

This past 6 weeks have been especially an extremely fought time for me. Due to the Sjogren’s literally eating away from the inside out, and no one knowing it until it was too late, I have had to endure having two sets of 5 at a time teeth pulled, much of it difficult due to the teeth being so brittle, thus difficult to excise, then after going through a couple of times trying to make sure the complete regular dentures will fit right for now, I went through a couple of visits for that. I finally got my “new teeth” just this past week on August 12th, 2014. Yet, I still had 11 teeth that had to be pulled all at once, then my gums were sutured shut, after my dentist had to do some “filing” to my bone so the dentures will fit properly, and then my gums were sutured closed in the front, top and bottom. I did then immediately get my dentures put is, but of course with extremely swollen gums, suturing and a great deal of bruising due to all of the local anesthetic being put in the syringes, then the extracting in itself, my gums developed some very sore spots, and even several mouth ulcers. Those I get with Sjogren’s to my dismay. I HAVE to be able to wear these teeth, since I have none of my own now. And I cannot have them “modified” to be held in with the “mini implants” until the bone is completely healed from where all of the teeth were extracted first. This process could take 90 to maybe even 120 days. My problem is trying to have my own mouth accept them, due to the issues of ulcers, and other problems I develop in my mouth due to the Sjogren’s. Then even at that there is already over $4,000.00 paid all of my pocket to get this far with the dentures. Then in another 90-120 days, there will be another $1200.00 (what was “left off accidentally the original treatment plan to pull all of the 11 teeth left) that we were not expecting, then another over $3,000.00 just to have those four “mini-implant posts” put into place in my gums, then the dentures modified to fit properly on those posts. If I could wear the dentures as they are now, I may not have to incur the last $3,000.00 plus BUT I can already see since I am suffering from ulcers, (probably a bad flare of the Lupus, Sjogren’s, and RA) from all of the trauma to getting this far with the dentures, and all of the other very stressful things going on in my life at the present, it has brought a bad flaring up of the autoimmune illness. When this happens, I can have everything from those types of very painful mouth issues, severe Lupus Headaches, severe fatigue, swelling of my joints, the “mylar rash” on my face, & numerous other symptoms that are from these illnesses. It is shameful the amount of time, the loss of quality of life I have sufferer and continue to suffer, the lack of enough research, medication, doctors, and other medical items that may help to put these illnesses in permanent remission, or not get them at all, then I have to fight “tooth and nail” (no pun intended) to get my Medicare Advantage Plan to pay a dime, especially when it comes to anything to do with the huge burden of expense of all that I have endured with my mouth, and the Sjogren’s that causes it. I want to see this change, for myself, and also for many others, some I have met recently that are going through the same situation that I am. Most of them like myself, really taking on a very heavy financial burden because they cannot get Medicare or a Medicare Advantage Plan to cover any of this even though it is a “medical” problem, not dental per se. For some $9,880.00 plus (because I already had several teeth that rotted down to the gum and had to be pulled before the procedure of getting my mouth ready for the dentures) may not think that is a great sum some of money. BUT, someone living on Social Security Disability, and the spouse (my husband) that had been my “caretaker” for the most part, then he was in a severe, almost life taking vehicle accident on March 26th, 2014 and spent almost 4 months in the hospital, with many complicated injuries including his spinal cord. Thus now he had massive health needs, puts even more of a burden on my life and on his that I an barely begin to tell about. He was hit from behind by an 18 wheel tractor trailer that day, and rushed to Baylor Emergency in Dallas, where he was operated on for basically a “broken back”, 7 broken ribs, and the list of injuries goes on and on. So, us trying to take care of one another is a daily struggle. Again we begin all over to try and find proper physicians for him through the system, and much like I have come to find out, many doctors are refusing to take any Medicaid patient, and now even worse, are refusing to take Medicare patients, due to not getting paid properly, and in a reasonable time length.

I would like to see for one Medicare or these Medicare Advantage plans cover MORE on something such as Sjogren’s, that is not “dental” in nature, but caused by a physical illness. I would also ask that rather than put up a road block, where the patient cannot get through to anyone at Medicare to explain the problems, or be able to get our doctors and dentists to be able to help get these types of things paid for just as any other type of chronic illness. I cannot express enough the huge amount of emotional, physical, mental, and financial anguish I have been through, and still have more to go just to be able to eat. But, my teeth are what can sustain my life, and without them, I am at risk for all types of other physical and emotional issues.

I realize we have many people in our nation, and around the globe in need of all types of medical attention. Yet, in a great nation such as the United States, our people should not have to bear such a hardship, and not have anywhere to turn to get any type of financial assistance with something so critical as your teeth. I did NOT cause this, the disease did.

I ask you to see if there is a way to change this system, give help to get things like this paid for or at least a good portion paid for by Medicare and/or a Medicare Advantage Plan. I ask you to get the funds out there to get more specialists, so we have enough doctors to are qualified and trained, that have went through a major study of these life altering illnesses, and can give us back our quality of life, and find these illnesses and have the ability to treat them before 5, 10, of more years go by and the damage has already been done.

I feel I do my part by voting, by participating as a volunteer, activist, and Ambassador for several organizations that are trying to change the face of Arthritis, Autoimmune Diseases, and all of the other medical problems that come with them, I sign petitions, I send letters, make calls, and send emails. I am somewhat limited to do what I can medically and monetarily, but in the ways I can try to stand up and make a difference, I give it my all. Now, I ask you do to the same. Stand up for all of us that want our quality of life back, to be able to do the simple things in life like eat, do a hobby, work in a garden, or whatever you may want to do, by giving the way with funds, research and voting for bills that will reduce the terrible burden off of those like myself.

Thank you for your time and for listening. I hope my “one” voice can help to make a difference.

Thursday, March 6, 2014

PART 2 - Do Your "trust" your Own "instincts" Over some of the Medical Professionals (AutoImmune Illnesses or Not)

since this story was "ongoing" until even right at this moment, I've decided to bring the "rest" of it to you in a 2nd part)

Thus... this is a continuation of my prior post....  (PART 2!) -



Do Your "trust" your Own "instincts" Over some of the Medical Professionals (AutoImmune Illnesses or Not)...


Being Caught in an Upheaval Between An Insurance Company, A Physician's Office, My Own Autoimmune "Flaring" Body, A Pharmacy, and What to Trust? Myself, My Doctor... Any of us... we are all susceptible to "Medical Mistakes"... And How do We Avoid those? Or Can We?...


First of all I want to bring something to your attention, that my own Pain Physician brought to mine last Thursday. I felt after I had written the 1st part of this, surely that "ongoing saga" would end. Well, folks, I was mistaken, and here is the "rest of the story"....

I am not sure how much you have paid attention, but when was the last time on any "piece of medical documentation" (i.e. especially insurance and so forth) have you actually seen a doctor or physician called a "doctor or physician"? No sir, probably not in a long time. Now, the term "provider" has taken over the entire realm of medical professionals, our "Primary Care Providers"? What the hell is that? I consider "PCP" to mean Primary Care Physician. It was well pointed out to me, that in the 1970's, the terms like doctor, physician, nurse, and all of the "correct" titles of our medical specialists out there suddenly disappeared. Almost as if "David Copperfield" had came in and took them out of the language. Anyone can be a "service provider". Your plumber is a provider of service. The guy that takes your groceries out to your car, also is a "service provider". What about the mechanic that works on your car, "service provider". Well, she or he, DID provider YOU with a SERVICE! But, did they provide you with a medical item? Did they check you for an infection, take your blood pressure, write down all of your health concerns, and then turn those over to the next professional, your physician, that certainly should know more about your health and body, than the tires on your car. Good question. Same way with us. If you start looking at insurance paperwork, bills, anything medical, you will begin to notice, you are no longer a "patient". You are no longer someone who is ill, and is in need of a doctor. You are a "client", or some other manner of terminology that takes the "medical" portion out of it. Now why would this happen? Well, as my Pain Physician explained it, it was mainly due to "Medicare" and of course then the insurance companies that knew if they "took out" specific terminology for people such as physicians, nurses, patients, and so on... and put in generic terms such as "provider" or "client", then alas they can "charge a different price for things". They can take what should be just what it is, a physician's officer, and turn it into a "business", with a board of directors, and do you think those people sitting on that board of directors cares about all of their "doctors, nurses, medical professionals, and the patients?" Well, more than likely they are thinking about the "stock holders", or the "political power", or the "loop holes" that can NOW be created, because this is not a medical doctors professional office. It is a business, for clients. 
I found a very interesting article about this. After my Pain doctor and I had a very long conversation about how Medicare, Insurance, and the entire realm of our Medical Professionals, doctors, nurses, labs, hospitals, clinics... are going straight down the tubes, while those "fat cats" sit up on Capitol Hill, laughing in our faces, and could care less if I have a Lupus and RA flare! So what? BUT, if I could for ONE DAY deliver HE or SHE with the severity of pain, stiffness, fatigue, the LACK of any quality of life, could not go to a meeting or to work, could not clean the house, or go shopping. If THEY could have each and every symptom many of us go through in just 24 HOURS, I wonder where they would be looking, crying, begging, and doing everything in their own power to have a physician DO SOMETHING. Plus they had to fight the pharmacy, the insurance company, the doctor due to his fear of giving medication due to all the red tape, how long do you think it would take to make some HUGE CHANGES on Capitol Hill, and in our Doctors offices, pharmacies, insurance companies, and I would bet that those "lobbyists" that make those big bucks for supporting charging 2,000.00 for a 5.00 bottle of medication or more... all of that would be put to "bed" quicker that any one of us could shake a stick at. 
Boy, talk about having the "wool pulled over many of our eyes"! Let's face it, those of us "fighting" tooth and nail, almost dripping blood just trying to get SOMEONE, ANYONE to help are NOT stupid people. But, we have become so disenguaged, disenchanted, tired of the battle, lost hope in the true meaning of what this nation is SUPPOSED to stand for... become those that are giving up, because we do not feel we can win against Congress. Whether it is state, local, Federal... and all in between those with MONEY DO... and those with OUT MONEY do WITHOUT!
Here is the article link and if you do a search you also will be able to find information on this and why it took place:


I release this gentleman goes on to talk about "Concierge" type of Medical Care. In many ways, it would make total sense. For us that do NOT have insurance. For those of us who must pay cash. These physicians in many ways would make "more money" by charging the patients on a "cash basis" than what the EVER see from an insurance company! 
I don't know about you, but when my "Explanation of Benefits" comes in from Humana, and in the first place a doctor has charged $450.00, for a 3 minute consultation, right there you know things are screwed up.  But, take a look at what the insurance "really" paid that physician? He charges $450.00. The "insurance" gives a "negotiated" discount of $395.00. Let's say my "co-pay"was $40.00. Well, let's see. The insurance paid him a total of $15.00! In the first place, I PAID MORE in a "co-pay" than the INSURANCE DID on the actual bill. And guess what? My insurance paid a surmountable $15.00 for that visit. 

Now I am not sure about you, but something sounds too fishy in the fish tank on that one. What about these bills (and my husband STILL argues it is NOT true, but it is)... you go into the hospital for a "routine outpatient surgery". The outpatient portion of the hospital bill goes to the insurance company for this and it is $15,000.00. Your co-pay is $200.00, of which they quickly make sure you pay BEFORE THE SURGERY! You get the "EOB" in a few weeks. Okay there is the charge for $15,000.00. You paid your $200.00 co-pay. The "insurance plan" negotiated with that outpatient clinic that they would pay $300.00 on that procedure. So, they got "billed" $15,000.00! They were told the patient owed $200.00, which you paid. And the insurance paid an entire amount of $300.00! So that means that bill in total was paid "correctly" at a total of the $500.00. What about the other $14,500.00? Well, that outpatient clinic has to "write off" that, because they were told that on the one procedure, it should only cost an average of $500.00. Thus the rest they "eat", basically! Now before you think WHAT??? No wonder they can't stay in business! NO ONE STOPPED to think that the procedure you had may NOT have cost no where near $15,000.00! Let's say on the average it costs $550.00 for that same thing to be done over the nation. SO, who charged whom TOO MUCH, and WHOM paid whom too little or too much? I worked in a hospital business office for 6 years, which was about 5 too many, as a patient "counselor". In other words, I was the one trying to get them to pay their bills. Well, I also did a great deal more than just that. I "refiled" claims, helped them get the insurance to pay, and so on. NOT any more! Boy, "if" they file it, you are lucky. And to get them to "refile" a claim, is nearly impossible! Plus, if I had TALKED to any of my patients the same way I have been spoken to by those in the medical business offices these days, I would have lost my job the first week I was there! I cannot begin to tell you that I've been called everything from an idiot, to a moron, to told I was stupid and should just pay the bill! And that was the "nice" people! Yes, but it was NOT so nice, the times I am correct. When I FINALLY get to the RIGHT person, and I AM CORRECT, they filed WRONG, and then called me an idiot when they told me my Mom owed over $500.00 for a surgery, that she only paid $200.00 for the MORNING of her surgery, I can tell you that ALL of the women in that "office" are NO LONGER employed there. It literally took me 6 months, over that really, hours and hours of phone calls to them, to the insurance company, and visits when I was basically told to get out of the office.... and THEN A LETTER TO THE PHYSICIAN! Guess what! Within 3 days, there was an extremely NICE gentleman that was HEAD over that outpatient facility, that begged, sweetly, and apologized 20 times for "their horrible mistakes". And how he told me that he "thanked me", because they had also BILLED OTHER PATIENTS, for MONEY THEY DID NOT OWE! MMMMM... wonder how many elderly people paid those bills... and no telling how much... and then hopefully got a refund! 
If you cannot get anywhere, I can tell you a letter to the proper physician, usually works quite quickly. Especially when he is a portion of the Board of Directors, of the medical facility! But, more than once, even over a huge issue from when I was so ill in 2010, and spend way over 6 weeks in two hospitals. Again after months of fighting, I wrote my doctor a very explain and thorough letter, and within about 5 days, the entire situation was a mute point!

Alas comes to the NOW what I shall call the 2nd portion of a "Rhia's Week from Hell" with doctors, medical facilities, pharmacies, and the like.

I did the "stool samples" for the "PA" Monday, a week ago tomorrow. They were taken in, and I found out easily that they could have been processed within a couple of hours, no problem at the hospital. But, no the nurse from hades told my husband it would be 3 DAYS! Well, as he had told her, I would be dead by then. As he tried to explain again for the 10th time, We WERE very concerned about this HORRIBLE, unstoppable diarrhea I had. Again, not a budge... just another comment about "take her to the ER" if you don't like what we have to say! 

So, three days went by, and at that time, I was NOT well yet at all. In fact the flares were worse, I was  even more weak and fatigued, and all I knew to do was NOT take those antibiotics for sure, keep hydrated as much as possible, rest, and try and keep something bland in my stomach. Then I found the natural probiotic (IF we could find it in this small town) MIGHT help. I had read several people giving it rave reviews. Thus since I was NOT going to the ER, unless I got much worse, or if something else happened, we did what we could do ourselves. Well, it took about honestly 9 days, I believe, but first back to the days for the "test" results. No phone call, no email (they usually email me labs etc), nothing. SO, Friday, I called. This is truly the answer I got. I asked if the results were in. The girl on the phone said, well yes, they are. Then she said well, I will print them and lay them on the "PA's" desk. Well, I knew then there was NO WAY that chicken woman, nor her nurse would call me back. And so I was correct. About 7 hours later, I get a call from a VERY new. very young nurse there, and she said. Well, the PA said there was no bacteria in the lab work. And THAT WAS IT! NOT anything like, well how is she doing? Did she get any better? What about the Flares? NOT ONE DAMNED WORD!...NADA... ALL I heard was no bacteria, and click... that was it! Which, I already expected! But, the audacity of a "professional" that is supposed to be a PA, to my doctor who has been seeing me now since 2008, and HE is the ONE that usually IS EXTREMELY CAUTIOUS when it comes to me! In fact the "last time" I saw him, I had bronchitis. That was about 3 months ago or less. He told me then, YOU are very complex. You can go from a mild cause of bronchitis, to being in ICU on a ventilator within hours! I ALWAYS take special efforts to insure you get exactly the care you need due to the autoimmune issues you have. NOW, from that to his "PA" basically telling me to kiss her butt... within less than 3 months time! Wonder if they have PROBLEMS THERE????

*********** NOW. there is MORE to the STORY!!!!!!

After a very long drawn out affair in getting the PAIN PUMP FINALLY refilled on MONDAY, that also took forever, even my pain doctor just has this "odd" attitude. He seemed to be almost more cordial to my husband (and he is a new patient) than me, who has been seeing him since 2008. I NEVER did get quite over to him about the severity of the pain I am going through, and I am STILL going through yet this morning... 

This is NOW Thursday at almost NOON on March 6th! I am in still SO MUCH excruciating pain, I could just fall off the Earth right now and be happy.... for at least I would NOT feel so CRAPPY anymore! 

And again the ongoing "Rhia's Murphy's Law" continues. Rather than have 3 "things", mine are like at 53 things and climbing each day. Again, as I've said over the past 14 days or so, this has turned into total insanity.

AS I just said, today is Thursday. On Tuesday, my Mom had an appointment with the jackass doctors office, but just for labs. She was also told that he would not be in the office until after the 25th of March. So, they moved her appointment to then. Well, she went in Tuesday for the labs, and you know how she is, she is VERY nosy. :) Well, after asking about so many "new faces" and she is right, everyone that used to be there is just about gone. The past year each time you go in either everyone in the front office is different or the nurses are different... it is just nuts. Well, first of all she found out the majority of the employees that are there now, have been there LESS than 9 months. That right there tells me something is very wrong.

She finally asked where "Dr. Blair" was? Mom told them about the conversation of him being out until the 25th of March and due to that her appointment was changed to that day, rather than next week and so forth. Mom said she could see them all "huddling" in the hallway down from the main front door of the office. I am sure probably decided what Mom would either ask next or how to handle it. She found one of the nurses that have been there for awhile, and the one thing is that our Dr. Blair, with a wife and THREE stair step kids, like 5, 3 and less than 2 or so... are "splitting the sheets" so they say. Undoubtably his wife is divorcing him. Well, does not surprise me, because first of all he is NEVER at home... never... plus the "nurse" he had for a very long time, all of a sudden quietly "disappeared" about 7 months ago... and she was beside him for everything! Where he went, Nursing home, hospital, weekends, nights, whatever, she was with him. I kind of got the impression that their "time" together may have not been "all" work... but I don't know that at all. That is just something I observed even 3 or more years ago.

Anyway, it gets better. About 2:45 in the afternoon my phone rings, and it is the doctor's office. They said "Ms. St...." and I said yes, you mean my Mom? They said no, you. I said oh, well okay, you have me. What's up? NOW (funny how "lab" work changes suddenly)... this nurse is saying that the SAME PA that told me there was NOTHING in the lab stool samples on Friday last week, all of a sudden DOES CONTAIN a BACTERIAL TYPE YEAST - kind of like Thrush! I almost dropped the few teeth I do have in my mouth out on the floor! My question was " What did you say?" Again she repeats the PA's, name and said she needed to let me know they called in a script for me, because I do show a "bacterial type yeast issue" in the samples from last!

Well, I was in such shock, dismay, mad, angry, pissed, ready to slap the wall, kick my trash can, call them liars.... and of course,  I said , well, okay. She tells me to "stop" a med I usually take for one day, take this pill, then I can go back to my regular meds. Now how the hell a stool sample, collected a week ago yesterday, that shows the results arrived back at the doctors office I think late Thursday night, and Friday seemed to "show nothing wrong", ALL of a SUDDEN, guess a bird did it. ;) and now it DOES SHOW something wrong!

My first thought, and I am almost 100 percent sure I am right, me getting that phone call yesterday, was ALL tied into MOM, and that lab work she had done about 2:00 pm yesterday in the office... and all of her questions led up to someone deciding it could be that THEY BETTER go LOOK, since my bet it NOT ONE SOUL saw those lab results until yesterday. I thoroughly believed they were printed, put on the PA's desk or possibly the Doctors, and they told the nurse to call me back and tell me nothing showed up. If I were a really betting soul, I would be betting lots for sure.

I also believe that after Mom's inquest while she was there, did some shaking and moving.  I am sure our doctor heard it all... and you can believe he probably has those results, and he had looked himself yesterday and saw that there WAS A PROBLEM! Also, I had asked Friday for those to be sent to me from the labs. I ever got them. So, yesterday, I asked the nurse to please find somebody that can send those labs to me today! And this is now I know how new the bunch is... I've had 4 people in the past couple of weeks tell me that have no clue how to "upload" or work with the "patient portal"!!!??? WHAT!??? That is what it is for... so WE can get OUR results etc... and not have to wait for someone to copy it, mail it etc... with the few keystrokes it takes, it is on my portal and ready for me to read. So, within about 45 minutes sure enough it was on my "portal". AND right up AT THE VERY TOP... the first thing that was "abnormal" and way out of range was the "bacterial yeast infection"!!!

Then I go to the dentist yesterday morning, thinking he was going to begin "patching" and working on the ones he could. Well, nope, he ONLY looked, and said well I see at LEAST 6 holes (in 6 different teeth)... 2 or 3 at least hurting on the right side so badly, I cannot stand anything to touch them. And guess what... he is out of the office until next week .... and he can't even begin until next Tuesday... and he has osteoarthritis so bad in his hands... he cannot do many things. like he can't extract a tooth at all... and all the time he works on you...he moans and groans... I feel for him... he is not that much difference in age than myself a few years older, but basically his career is almost gone... and it sucks... BUT it also sucks that now I have to wait IN PAIN until next week. And further more, he won't really even know about whether he can "patch" anything... once he begins looking they may ALL HAVE TO BE PULLED! So, even that has been weighing on my mind... I have the other dentist here that my dentists sends me to when it is something like having a tooth removed that he can't do any longer. But, the more I wait the worse they get. So, I am trying to decide whether to just go to the other dentist for all of it... but I do know he charges quite a bit more also... and if I have that many... then even just to pull the damned things will be over 100.00 EACH! I might as well go to the oral surgeon, have them all pulled and begin on those "snap in" type of dentures. Which if Humana will do as the woman told me on the phone, and PAY for it since this is caused by ILLNESS, then the money is not such a huge issue.

Besides with the way things are looking, I am facing dental implants, even though these dentists are not exactly for them, if you can keep a tooth in your head. Well, I agree. Besides my hair, LOSING my teeth was something I swore I would never be able to live with. Well, guess what? Guess I am living with it.

So, then let's deal with this pain pump issue. It finally got refilled Monday, lock me out for 24 hours while the new medication made it's way into the spinal canal, and then I could use my boluses. Well, I thought at that time, from there it would be a good possibility that my body may "adjust" to the Enbrel after a couple of doses, my pain pump would be back as is, hopefully for the most part this stomach mess is going away, BUT we have a dramatic weather change. A couple of days ago it went from 70 DEGREES at 2AM and by 8AM it was dropping quickly. By Noon of that day it was WELL Below FREEZING and the wind chills were sitting at a new record of about 4 degrees. I knew two days before, that we were going to have one hell of a change, my entire body was screaming out about it. Sure enough it hit... and the pain just went down hill faster than the temps did... as of now, the pain is in so many places, and It hurts is so many different ways... I cannot begin to even describe how badly it really is.

I don't know about the dentist yet... and how I will handle it all. I took my 3rd injection of Enbrel this morning...  and I know it is early, but I do not see any difference, in fact I feel worse. Now Jim has the chills and body aches again, and has been feeling "flu like" symptoms since last night.

ALL of the lists, of lists... of the list and the other lists that I made... are NOT getting done... I can't seem to think about one thing for very long, other than PAIN! If I get up and do something, of course it takes my mind off the pain. But, then I am NOT getting anything else done, and I don't have anything ready for the trip in less that two weeks. Under the circumstances, and if things do not dramatically improve with my pain and health, there is no way I would make the trip anyway. I am so fatigued, run down, hurting, not sleeping, could care less about what I eat, anything... I have had everything from  a piece of cake for breakfast to graham crackers, apples and peanut butter. Or toast, or you know mainly something I don't have to chew very much. I was drinking coffee yesterday morning and slivers of teeth were coming off! And I was NOT eating anything!

I tell all of this, and there is yet much more to finish this... so there maybe a 3rd "method" to my already slim to none, to insanity of my brain before I am through with it.

I will say this.... I am working on doing some things for the Arthritis Foundation in regard to some advocacy stuff a couple of them asked me to help out with.

I want to ....talk about there 3 BILLS - Congressional Bills... pieces of Legislature that are going to effect ALL of us.... especially those with chronic pain, chronic illnesses, autoimmune issues... plus Pediatric issues also.... here are the numbers of them and a brief description... if you have time... take a bit and go to really SEE and UNDERSTANDING the critical issues of these... and just how much worse things will be if we don't make changes NOW!

There is much more on the Arthritis.org website! Take a look under advocacy and you will see what they are addressing in 2014 as priorities with Congress. Write or email your Congressional Leaders, Senators, House of Representatives, the President of the USA, the head over Medicare/Medicaid.... and any all you can find that have to do with these bills and laws, or any others pertaining to our health and well being... call, email, twitter, post on FB, snail mail... but DO SOMETHING! If things were not so BAD as far as Medicare and that entire ordeal.... I, nor many of you would be in the horrible shape we are in.....

 Patients’ Access to Treatments Act (H.R. 460)

http://www.arthritis.org/advocacy/advocacy-priorities/high_costsharing/


H.R. 1827, the Pediatric Subspecialty and Mental Health Workforce Reauthorization Act

http://www.arthritis.org/advocacy/advocacy-priorities/pediatricrheumatologist/


"Post-Osteoarthritis and Rheumatoid Arthritis" in the Peer-reviewed Medical Research Program, Congressionally Directed Medical Research Program of the Defense Appropriations Bill, FY2015 


http://www.arthritis.org/advocacy/advocacy-priorities/dod-research


Part 3 to follow!