Showing posts with label AF. Show all posts
Showing posts with label AF. Show all posts

Tuesday, November 27, 2018

After All of the "Buying" Now is the Day to "Give" - #GivingTuesday!

Giving Tuesday! Now that we have given Thanks for our loved ones, friends, and had our meals, shopping for days, and all of the "buying" - TODAY is the DAY TO GIVE -  #GIVINGTUESDAY  

Pick One of your Charities or reasons, or places to give to and give in order that we may help to either cure illnesses, bring change to stop illnesses, to raise awareness, to feed the hungry, or whatever you may feel needs to be done or changed... Raise your Hands and Help to Giving Tuesday!






Tuesday, July 25, 2017

From the Arthritis Foundation to the AMA, to ALL of THOSE concerned with the "fate" of our Health Insurance PLEASE sign a petition, call Congress People, email, LET YOUR VOICE BE HEARD!

I know MANY OF US, ARE SITTING ON PINS AND NEEDLES DUE TO THIS "OBAMA" REPEAL, REWRITE on OUR HEALTHCARE SITUATION!

All of us with our own CHRONIC PAIN AND HEALTH PROBLEMS, to those with CHILDREN with Chronic Health issues, we ALL need to take a stance and LET OUR CONGRESS PEOPLE KNOW HOW WE FEEL!!!



Taking "Medicaid" benefits or lowering them to where doctors will not even see a person, or just plain getting rid of many doctors that will refuse to take some of these health insurances due to NOT GETTING PAID, OR NOT ENOUGH, is ridiculous!!!


WE, THE PEOPLE, OF THE UNITED STATES OF AMERICA, ARE SUPPOSED TO BE IN THE GREATEST NATION ON THE GLOBE, YET MANY OTHER COUNTRIES TAKE CARE OF THE HEALTH AND WELL BEING OF THEIR CITIZENS AND WE CAN'T??????
WHY!? Because MONEY is not being "handled" properly. GREED, FROM EVERY place in our governmental bodies, and THOSE THAT DO NOT UNDERSTAND, how horrible it is to BE ILL, AND NOT BE ABLE TO SEE A DOCTOR, OR AFFORD IT, OR MEDICATIONS!

Those in "Congress" and most other government jobs, GET PREMIUM HEALTH COVERAGE, THE REST OF THEIR LIVES, so they don't have to "worry" over the costs and expenses of GOING BROKE! If you can't afford your children's vaccinations, or their medications, or your own medications!

I have been "watching" the "costs" of my medications, even though my insurance "pays well" what gets me is EVEN GENERIC PRESCRIPTIONS ARE SOMETIMES 3, 4, 500.00!!! A MONTH, so tell me and we wonder why our health insurance premiums are too high, or if you have to buy medications without insurance, YOU CANNOT AFFORD SCRIPTS THAT ARE THOUSANDS OF DOLLARS A MONTH! It is totally insane....


It just chills me to the bone, and makes my blood 'boil" at the same time to witness only ONE of my meds in "Generic" and the "total cost" of it at 500.00 a month!

I CALL THAT GREED!!!!

So, look up your DISCTRICT CONGRESSIONAL LEADERS, AND SEND THEM EMAILS, OR MANY OF US ALREADY GET PETITIONS, OR LETTERS TO SIGN FROM VARIOUS PLACES, LIKE THE ARTHRITIS FOUNDATION, OR THE AMA SENDS ME INFORMATION, and just about any and every non-profit or Foundation that has to do with the rising costs of medical insurance, the government taking away benefits, and leaving people "hung out to dry"....

Here are a few links:

This is at the Arthritis Foundation if you are already an Ambassador or an Advocate you just fill in a couple of blanks, or you can sign up, just for the letter to Congress...

https://af.ac360.aristotleactioncenter.com/?alertid=e89992b5-9589-47ad-bcbb-d1dedf905050&alertType=legislative#/alertId/e89992b5-9589-47ad-bcbb-d1dedf905050/

  
Mom's Rising.Org


Email Congresss, Tweet or Call the AMA's Link:

https://www.votervoice.net/PAN/3/Campaigns/50663/Respond


These are just a few!!!!! Just about any foundation dealing with medical/health problems, and patients, and insurance, along with involved in getting the government on board where they need to be, you will find a place you can sign something on....

Sunday, November 20, 2016

Shout Out Tuesday! (I missed!) sharing the love to those Health Activists that Truly give me a "hand and foot up" when I need it the most! (TUESDAY 15th ,2016)

TUESDAY 15TH - WEGO BLOGGERS ANNUAL EVENT -  shout out Tuesday to some of my great people in the HA and friends world!




I must thank Laura Keivel with the Arthritis Foundation. She has helped me and continues to help me get through some of the very tough times these illnesses , and life can throw us in. From all of my own health issues, to Jim's accident while I was at the Summit with them in DC in 2014, Laura has been right there, helping me in any way she can as a mentor, a friend, and giving me advice to make me feel like I can still "charge through these things" and bring my activism and writing back on tract. Laura, you are just a true angel.


Barby Ingle and I got to know one another through chronic pain, and also with her writing, her testimony and advocacy skills, and also someone who can be so ill and in the hospital yet bounce back and be on the road again, never allowing the pain and chronic illness steal away her "show" through her goals, Barbe Ingle, you are an inspiration.

Kerri Fabert I met during my 1st Summit in 2014, She lives about a bit over an hour away from me, and has Sjogren's that now is effecting her sight even worse than ever. Yet, again, she is a loving wife, Mom, and works in the medical field, as well as does the Jingle Bell Run, and other events to help get the word out about autoimmune illnesses and yet how we can ALL can contribute in one way or the other, Kerri THANK YOU FOR ALL OF YOUR KIND WORDS and being a role model in so many ways, activism, being a fantastic Mom, Wife, and friend.


WEGO Health has SEVERAL INCREDIBLE PEOPLE, that always are there to answer my questions, and listen when I need an ear to "bend".  Susan Mees, Danielle Schroth, who is Community director and also works with Cure Ckick, helps to make Cure Click something that everyone can do to help spread the word about Clinical Trials. I am so proud to be a part of Cure Click!

Pam Gill, from the more "local" part of the Arthritis Foundation, I met at the 2014 Summit, is just a sweetheart. She is a huge advisor for our District in this Central portion of Texas, and keeps everyone up and going' excited about all of the activities, from the National, to the State and Local parts of the AF. Thanks Pam for being a great friend and even though we don't speak much, I always know I can email you for guidance and help.

KRISTEN AT WEGO is such an upbeat and sweet young woman! She is always giving up hope, encouragement, and reasons why she feels "we" are what makes "WEGO" work! - "the patients"!

Gosh, then there is Laurel, Jackie, and so many at WEGO Health, that I am so thrilled to be in touch with from time to time. Everyone At WEGO are just wonderful people, and I feel blessed to be a part of the patient team.

There are so many more of you that give me hope, lift me up, and give me the strength to move on, even when I feel I am not make enough of a contribution,

Clarissa Shepard who has a huge following on her Facebook group about FM, and the illnesses that go along with them. Clarissa is also a dear sweet lady and friend, who is there when you need her, and works herself day and night keeping up with all of the information about FM, and the other illnesses that go along with that fight, Much like other autoimmune illnesses, Fibromyalgia, is yet another one of those mystery illnesses that we still have a very long way to go before we understand the issues surrounding this horrid "disease". I appreciate you Clarissa and thank you for your hard work and friendship.

This is hard to do because I know I am missing many... but know ALL of you are in my heart, and I am so elated and feel honored to know each of you in all ways....

Friday, November 11, 2016

WEGO Health Day 11 - Bloggers Challenge a "TOP TEN "must follow" Lists From Facebook Twitter, and Blogs....

This one is kind of a mixed up "bunch" for me. I have those that follow me on Facebook, but they may rather follow my blog posts, or I know I have a good deal of following on Twitter. I really never have "kept up" with the number that come back again and again, but do know those that comment and read often, because they either give me a thumbs up, mention my "Newspaper" yes, I do have a Daily Newspaper I put out, FOR Chronic Pain, Chronic Illnesses and Dementia. I send it out daily on Twitter, Linkedin, FB, plus there is a follow page on my blog, in case you want to joint my daily Newspaper. I will say the newspaper "seems" to be giving people a great deal of information, because the articles are from reliable sources for the most part, I have also "tailored" it for those with the Autoimmune, Chronic Illnesses, such as Diabetes, Heart problems, and so forth, plus Chronic Pain, and all that comes with the controversy on it now, especially on our medications for chronic pain. Plus I added "Dementia/Alzheimer's" after my Mom passed away last June 9th, due to the fact I "feel" that it may run in our family, on Mom's side. Both of my Grandparents had it, but my Grandfather, had full blown very difficult Alzheimer's. Mom's turned into an aggressive, what we feel was the "Lewy Bodies" Dementia, that I watched take a woman of 78 years old, who could still drive, clean her home, and cook, etc... to within 4 months go to being bedridden, in diapers, could not even remember her home, who she was, and mostly had no memory most of the time of who I was. Within 2 more months it took her life. One of the most difficult times in my life, and something that has "changed" me forever, in SO many ways.... some good for the most part, and some may say things that may not be so good... but I know to just roll with the flow of it all, and NEVER take ONE MOMENT of life for granted.

So, Here is kind of a "mixed list" of blogs, Facebook friends, Twitter followers, and those that comment, and are "followers" in one way or the other....

Facebook Followers and I follow them also

Denise 

Venetia Shafer- FB

Amanda Matheny - FB

Cynthia Carr Czaplicki - FB and she really is wonderful about making comments and reading, plus she is a relatively new friend there. 

Betty Walters - FB

Raymond Veditz - FB
Judith Flanagan  - FB
Barby Ingle - FB
Nancy Hershalman Gipson - FB
Jean Marie Ely Breaux - FB
Jane Gill-Wilson  - FB

Blogs I follow (and love to tell others about)
Arthritis Foundation (I know it is a website but they have a blog also)
The Hurt Blogger
Rheumatoid Arthritis Guy
All Flared Up
Little Miss Autoimmune
Barby Ingle (all of her writing, articles, books & more)
Float Like a Buttahfly
Not Standing Still Disease
An Autoimmune Arthritic Systemic Life (of course my own  ;)
WEGO Health's Blog, & ALL of the Help. Challenges (good kind) and assistance they give to all of us!! (Website in general)
Creaky Joints

Twitter Followers

JoJo @SuzieMay08
Told You I Was Sick (Also great blog/writer!)
PajamaDaze
Arthritis Foundation
WEGO Health
Cure Click
Cluster Shade
Patient Power
Elizabeth@themamaspace
A Chronic Voice
 

And there are so many more, that either follow me, or we follow one another on Facebook, Twitter,Linkedin, Blogs, and even emails. There are many URL's that truly "help and guide me" at times.  US Pain Foundation, and International Pain Organization, Med-Page and any "medical newsletters I get and save. they are also a wealth of information.

So, to those who I may have "missed" here, I apologize, because I do see and read you, your posts, and know much about your lives and what all of you are going through.

 

So, Here are my lists!

 
#HAWMC  
 
 
 
 

and by the way, here is the link to my newspaper and the name of it!

http://news.autoimmunearthriticsystemiclife.com/#!headlines

Life Chronic Pain & Autoimmune Systemic Diseases & Dementia®

"All aspects of autoimmune & chronic pain illnesses, fighting to survive & grow past them"




 
 

 
 
 


 
 





Friday, February 19, 2016

The Arthritis Foundation and Arthritis Introspective - Two Creations as One to Give Us Advocates a "Voice" in Our local communities

This is only a tip of the total iceberg from a teleconference I attended last night, but I am totally thrilled about the idea!

The AF has teamed up with Arthritis Introspective to finally create ways "we" as advocates, and Ambassadors and so forth can have our own local community Outreach and Groups available for our towns and counties. I am totally thrilled about this idea and have wanted to do this now for years. So, now seems like the time to get involved in this.


Here is the link to the URL of the non-profit:









They have a Facebook Page also:


I will be posting MUCH MUCH MORE ABOUT THIS OVER THE WEEKEND!

Sunday, July 19, 2015

Let The Water Come and Carry You Away....

I had posted a long post last night, and for some reason FB lost it! I know better, usually I make sure I copy them before I hit the "send" button.... but the jest of it was my thoughts yesterday about our lives, especially mine at this time, being like a "river".... we go through so many different aspects, changes, sometimes we feel they are not so great, and often we don't really grasp the "why's", when, how of life. I had really found comfort last night, in thinking about my life, and once again it evolving, revolving, and "flowing" forward... most rivers never flow backwards... thus once the water has flown under that bridge, it will never go back... such as life... once this moment is over, it is done... finished... just as by our "Higherpower" said about the "7th" day of Earth... "'tis finished"... and was also know ass when all happened as it did on the "Mountain" once his Son has passed away, again, Tis Finished.... I am not trying to "make" this about "religion" at all, but those events for my own personal self remind me, that I am in this place, at this time, for a specific purpose... why things have happened as they have I don't truly know... some I've had an "open heart to" and it seems I've found a "new vision"... I am seeing my own world, and all the world with new eyes, along with a new mind set.... no longer shall I "blame" myself for what I have no control over... we cannot control actions that we can't control.... we can't "make" or not make someone else do something, we cannot change the weather, or stop the rain from falling. We cannot stop Mother Nature" and even though we can gripe and moan about it, it is just as it is... and as is supposed to be...I really wished I had not "lost" my post from last night.... it was a "Revelation" for me... and the way I worded it was what came through my heart and mind so clearly... but again I also "can't" control Facebook either.... SO, what I will finish this with, as I go and get ready to attend church again this morning is - one of my very favorite songs.... the lyrics "fit" so well, and it was THE SONG I heard back when I was 21 years old... that on a fateful night CHANGED the direction of my "flow of life" forever. Had the events that happened that night, happened any differently, I may not even be here, or I could be "lost" in a sea of horrible demise... so the song.... the lyrics... - "so much time to make up everywhere you turn, time we have wasted on the way... so much water moving underneath the bridge... let eh water come and carry us away...."   We often "lose" so much of life, time, thought... by "wasting" it on the things we cannot control.... yet if you allow those waters to flow... underneath that bridge... it will certainly carry you exactly where you need to be... love you guys and gals that support me so much... Rhia


Wasted On The Way Lyrics

from Greatest Hits [ORIGINAL RECORDING REMASTERED]
"Wasted On The Way" is track #14 on the album Greatest Hits [

"Wasted On The Way"

[Intro. (Acoustic Guitar and Electric Piano)]

Look around me
I can see my life before me
Running rings around the way it used to be

I am older now
I have more than what I wanted
But I wish that I had started long before I did

And there's so much time to make up everywhere you turn
Time we have wasted on the way
So much water moving underneath the bridge
Let the water come and carry us away

[Instrumental (Fiddle)]

Oh, when you were young
Did you question all the answers
Did you envy all the dancers who had all the nerve

Look around you know
You must go for what you wanted
Look at all my friends who did and got what they deserved

So much time to make up everywhere you turn
Time we have wasted on the way
So much water moving underneath the bridge
Let the water come and carry us away

So much love to make up everywhere you turn
Love we have wasted on the way
So much water moving underneath the bridge
Let the water come and carry us away
Let the water come and carry us away



Read more: Crosby Stills Nash - Wasted On The Way Lyrics |

Saturday, July 11, 2015

Incredible and AWESOME News for Patients with Lupus, RA, FM,Sjogren's, Heart disease, Cancer & so much more...

21st Century Cures, has stepped out to amaze and delight so many health activists, advocates and truly help to get our Federal Legislature involved in getting ALL of the research we need in order for so many of us to become "healthier" and hopefully gain some quality of life back.

Here is some information from the Arthritis Foundation about 21st Century Cures...



  • BREAKING: The House has approved the 21st Century Cures Act by a vote of 344-77

  • Thursday, May 14, 2015

    Please send an email, snail mail, or post to their Social Media Sites about the Arthritis Caucus and how we need their support!!!

    Dear Senators, Cruz, Cornyn and Congressman Barton...


    I post this because Vets are also extremely critical patients in the Arthritis realm. They all too often come back with all types of arthritic problems after their tours are over. The DOD helps to do research on these issues and I wanted to also let you know this is critical to thousands and thousands of your constituents yearly. So many hours of time are lost on jobs due to these horrendous illnesses, along with people not able to support and care for their families. Medications are much too expensive and without those most of us are unable to have any type of "normal" life. I urge you to help and join and/or sponsor the Arthritis Caucus. WE need your help and support!   I would , be happy to send more information about how the devastating illnesses effect Texans along with the rest of the nation. May is National Arthritis Awareness Month! 1 in every 5 adults, 300,000 children & countless families are affected by arthritis. It accounts of $156 billion annually in lost wages and medical expenses. 

    I also sent a tweet about these issues.

    This is Arthritis Awareness Month! We need YOU to also ask for support from your own Congressional Leaders.

    You can now tweet them, email them, snail mail them, and post to their Facebook pages. Most all of them now are also on Social Media, so that makes it much more simple to get your voice HEARD!!!

    So this for ALL that suffer everyday from these horrendous diseases, that absolutely destroy our qualify of life... they have mine and I know MANY others that also feel their life is almost nothing due to these illnesses.... 

    You can go to the arthritis.org site or here are some "sample" twitter posts:


    THESE ARE ALL SAMPLES OF TWITTER POSTS AND/OR FACEBOOK POSTS BELOW, PLEASE ADD YOUR STORY ALSO AND PERSONALIZE THEM....

    • ~300,000 babies, kids & teens have #arthritis or a rheumatic condition? http://blog.arthritis.org/news/arthritis-awareness-month/ #ArthritisAwarenessMonth

    • .@insertrepnamehere in honor of #ArthritisAwarenessMonth, please support the #arthritis community by joining the Arthritis Caucus! 


      or you can go to their Facebook pages:


      • May is National Arthritis Awareness Month! 1 in every 5 adults, 300,000 children & countless families are affected by arthritis. It accounts of $156 billion annually in lost wages and medical expenses. http://blog.arthritis.org/news/arthritis-awareness-month/ 

        TO LEARN MORE GO TO:

        http://blog.arthritis.org/news/arthritis-awareness-month/

      • THERE ARE ALL KINDS OF WAYS YOU CAN HELP, BY BLOGGING, TO ALL TYPES OF SOCIAL MEDIA AND USING IT TO SPREAD THE WORD!

    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.

     

    Saturday, March 21, 2015

    AS YOU Go to DC Next Week to Represent ALL with so many health issues, may WE ALL do our part to BREAKTHROUGH the disparities that hold back Cures...

    Well the "day of infamy" is almost upon many of us! That is the packing, preparing, and getting on that flight to Washington DC for several activities going on there this coming week! I believe our Congress will be a bit on overwhelm at times with all of the health activists, Ambassadors, Volunteers, and many that will be telling their own personal story about their chronic illnesses, the different disparities and challenges they face, some daily, and how much more we need in research, in new technology, new medications, more specialized physicians, of course which all take lots of dollars to be able to fund some of these extremely needed actions. Life is already a huge enough daily challenge, to work, take care of family, kids, go to college, and participate in the "daily" life of living. Then you add on top of that, chronic illnesses, chronic pain, being unable to get the doctors and medications you need, further more possibly not being able to even get a "real and proper" diagnosis FIRST so you can receive the treatment you need. The amount of "challenges" that those of us with chronic illnesses face, especially when the diseases are often arthritis, autoimmune, or both, and we still have so many UNANSWERED questions about these illnesses. Are they genetic in nature? Is there something on Earth, in our water, food, land, air, that is causing so many more of us to become ill with these chronic diseases? It is almost unbelievable to actually think about the growing numbers of those (and especially once again women) at an alarming rate being diagnosed with autoimmune, autoimmune arthritic, arthritis, FM, CFS. MS. Myasthenia Gravis, and then the other "ailments" that follow along with these "main illnesses"... brain issues, heart problems, lung problems, bones, joints, spinal issues, and then with Sjogren's the "dental" problems that are so very severe so quickly, that within months, like myself you find you are losing every tooth to this horrid disease, and there is not a thing to do about it, but have dentures. You cannot stop it or even slow it down. I tried. I was meticulous with my dental health, always had been. but, even as meticulous as I was, also using the couple of medications available, along with keeping my mouth moist, chewing sugar free gum, you name it I tried it, yet I still lost ALL of my teeth in less than a year to Sjogren's. So, each and every person, whether you get to go to DC this week and tell your story, or you are sitting at home, possibly too ill to attend, and you do your "advocacy" work from your computer, you send emails, you send snail mails, tell your own elected officials, and not just "federal" but our STATE Officials, and even Local governmental officials need to be a part of this growing, ever enlarging issue of autoimmune illnesses, and rare diseases. All also goes along, with people getting the help they need, so they can afford their medications, they can afford and be seen by the proper physicians, they can afford the surgeries, or whatever their treatment needs to be, even like myself, trying to PAY out of MY POCKET over $15,000.00!!!!! cash for my dentures to be put in properly... there are not many people around with that kind of available money to spend in one whack at a dentist! THIS NEEDS to be PAID FOR MY HEALTH INSURANCE! IT is A HEALTH PROBLEM, NOT DENTAL THAT CAUSED ME TO LOSE EVERY TOOTH!!! But, we ALL need to stand up and say NONE of this is RIGHT, NONE of this is ACCEPTABLE, WE should have the medical, dental, eye and more CARE of PROFESSIONALS and experts that can help us live somewhat of a normal life. The ALMOST INTRACTABLE PAIN I've been in over the past week, SHOULD NOT BE!!! I SHOULD not have to wait, I should have been able to have my medication UPPED the next day, not a week later! I HURT! I HURT to the point, that it's stopping me from doing what I love the best, my advocacy, my writing, my helping others.... my taking care of my own home, shopping. and helping Jim and my Mom... ALL of this is just WRONG! AND ONLY YOU AND I can MAKE IT RIGHT! So, for ALL of you whether you will be in DC next and able to "stand on the steps of the White House" as I used to say, and plead my own case and the case of others that could not attend, or if you are home, and not able to attend you still MATTER! YOUR VOICE will STILL BE HEARD! We must RING OUT, CRY OUT, and say ENOUGH IS TOTALLY ENOUGH! WE are one of the MOST INTELLIGENT NATIONS in the entire WORLD! There is NO REASON that our incredibly talented researchers, doctors, professionals in these fields can't find solutions, but they need funds to get these types of things running and off the ground. Again, I wish ALL next week an incredible and memorable trip to DC. May your voice RING true for all of us... from patients, physicians, family, friends caretakers... researchers... may we FINALLY BREAK THROUGH the "thick headed" thinking of some, and get brilliant things accomplished! As tears roll down my face, I beg of all of you to stand up and tell your story... to stand up and tell a story of a friend, family member.... stand up and be heard!

    Friday, March 20, 2015

    Excited, Thrilled, Disappointed, Upset, Mad At Autoimmune Illnesses, and sometimes just upset with life in general - Not able To go to The Arthritis Summit next week!

    I've not said much to anyone about my current situation with the autoimmune illnesses, pain, the severity of pain, a headache now that just won't go away, and all of the stress these autoimmune illnesses have caused me over the past month.

    I always know, for ANY of us, plans sometimes change within a day! When you have a chronic illness and/or chronic pain, every day can be a challenge! WE can have our "great days", our "good" days, our "okay" days... and honestly it seems more days that it is SUCKS! These illnesses completely destroy our lives as far as whatever normal is.

    They take us by the hand, heart, body and soul, and sling us around to the 4 corners of the Earth. We never know if we will land standing up, or sliding down that damned steep hill, with the rocks, twigs, gravel, and all scarring if not our "bodies".... our minds for sure.

    I realize that "autoimmune illnesses" are NOT the ONLY diseases that are chronic and hit us in a haphazard way of life. But, they tend to be really good about waiting until we have some awesome plans scheduled, then totally ripping them to shreds within a breath's space.

    I've been fighting with what I have felt was a Lupus flare now for weeks. I've also come to the place I MUST get these bottom teeth, "implanted" and anchored down. It is way overdue, and it is causing me to have all kinds of stomach issues, since there is so much either I can't eat, or I can't chew properly, thus I either avoid those things, or try to eat them, and almost choke, or they go down half chewed which is horrid for my stomach.

    So, I knew I was facing a possibility  of not being able to go to the Summit with AF next week, which SUCKS big time, since I am one that made a "Platinum Ambassador" and should be there to represent all of us that had that honor, and be there to do what I am supposed to and that is to get those in Congress, "educated", "on-board" "possibly involved in the Arthritis Caucus" and backing the Congress people that are in the Caucus.

    Plus I feel it is also my duty to lay out the "agenda" for AF 2015, and the things we need and hope to accomplish, from the issues involving now our "state" representatives, more on the realms of the DOD and the role in arthritis for our men and women that come home and develop these illnesses, to getting research out there in a more advanced way, and to "teach" ALL, public, government, professionals, the medical world, caretakers, patients, ALL about how "arthritis is NOT ACCEPTABLE" for anyone to have to live with.

    So, to NOT be able to carry out what I feel is my duty to do, has really put me in a tailspin of hurt, worry, and let down. I feel I've let down the AF, the Ambassadors, and let down everyone who has stood beside me all last year no matter what helping me to see, even though I felt I was not doing enough, I was doing plenty, even when I felt like I wasn't.

    Now I have developed something as of day before yesterday, that came on very sudden and hit me like a brick wall. I am not sure if it is a bad flare, or what. But, between a headache that is the WORST HEADACHE I have ever had in my life, that will NOT GO AWAY...my strength is none, I do well to walk across the house, I am freezing one moment, burning up the next, and I am in extreme pain from my head to my toes.... I feel as if someone has beat the literal hell out of me with a baseball bat, then ran over me with a car a couple of times. From my thumbs, all the way to my head, and all the way to down my toes, I HURT! A very DEEP BONE ACHE, that is relentless! Plus I ran low grade fever all day yesterday, and this morning, I can tell my body is fighting the fever, because I feel so damned lousy... I am hot one moment, chilled the next, cold the next, sweating the next... and our very HIGH Humidity is NOT helping it at all.

    Anyway, I honestly am not up to sitting here, so I will close this for now, and explain more over the next couple of days.

    But, I DO INTEND on doing EVERYTHING I CAN FOR THE E-SUMMIT!, and posting to social media and so forth as the AF storms Capitol Hill on Monday and Tuesday! I wish all of them luck, and hope it turns out to be an incredibly awesome Summit!!! Go Get Um!!!! I will be there in spirit....

    Saturday, March 14, 2015

    Biosimilars! The future of much more affordable medications for Autoimmune and Arthritis Illnesses, as well as others.... A Texas Bill to be Passed

    I wanted to share with my friends about a very pleasant and surprising phone call I received yesterday evening. It was from the Central Arthritis Foundations (Texas area) Senior VP. I have the honor of meeting her last year at the Arthritis Summit in DC, along with several other incredible people! Each have touched my life in so many ways. She was talking to me about the Summit, plus we have a "bill" in the Texas legislature about "governing" over the "bio-similars" here in our state. Rules to make sure patients get these when they are available, for the reasons why they are being made, which is expense, a major factor for patients. But, the bill is to protect the patient, the physicians, the pharmacies, so that things run smoothly, and patients get the "alternative" if available and if that is what their physicians deem to be okay for them. Anyway, we are having some of our Texas Arthritis Advocates go to Austin next week, and "testify" in front of the legislature about the bill we are supporting, and so forth. If you are here in TX, and these medications will some time in the future apply to you, someone you know and so forth, I wanted to let you know the number of the bill, so you can be familiar with it. It is Bill Support HB 751 / SB 542. OF course the biosimilar medications will definitely be a huge thing for those of us with autoimmune illnesses, arthritis illnesses, as well as other diseases also. They will be something that can help many of us get medications we need, but at a lesser price, which makes them available to many, many more of us. As we go along with this particular bill in our Texas Legislative body, you will see it come up I am sure along the way. It is one you will probably want to keep your eyes on, and we hope we have all the support we can here in TX, in order to get these medications to our fellow Texans as they become available. So, I was invited to go to Austin next week and "testify" in behalf of the AF. I am not sure as of yet, if I will be able to make the trip. I missed Pam's email I believe due to of course "spam" filters, so the original email didn't get to me. She resent it yesterday, so I am looking over the information now, and if things work out, I may consider going down to Austin next week to go in front of the legislature in support of getting this bill passed. I am excited to know over these next 10 years or so, we will be seeing hopefully MANY more of these types of medications, that will save patients billions of dollars and also allow them to have them much more affordable. I wish everyone a good weekend. It is dreary and appears as if we could almost have thunderstorms. The humidity has to be 100% PLUS!!! Insane for sure... from one extreme to the other... and between my own joints and pain, Jim's issues since the wreck, and even my two dogs... I saw them struggling somewhat with "stiffness" and some pain in their joints too. I will "post" more about this bill on my blog and the information on it so you can also do your own research!

    HERE IS THE WORDING TO THE TEXAS BILL :

    Support HB 751 / SB 542
    To Allow Texas Pharmacists to Substitute Interchangeable Biological Products,
    Help Remove Barriers to Lower Cost Drugs and Ensure Patient Safety.

    What the legislation does:
    HB 751 / SB 542 updates the Texas Pharmacy Practice Act.

    Provides Texas pharmacists with the ability to dispense safe and less expensive biologic medications to patients, by allowing substitution of an FDA-approved interchangeable biologic for an innovator biologic brand product.

    Current Texas law does not allow pharmacists to substitute any biologic drug products; therefore, pharmacists will be required to obtain advanced approval from the prescriber before they are allowed to substitute an FDA-approved interchangeable biologic for a brand name biologic.          HB 751 / SB 542 removes this hurdle.

    The current pharmacy practice act has specific rules that must be followed to ensure safe generic substitution of traditional drugs. HB 751 / SB 542 updates these laws to include a similar process to ensure safe biologic substitution. Biosimilars are expected on the market in 2015.

    Assures that only FDA-approved “interchangeable” biologic products may be substituted without prior prescriber consent. This is similar to substitution requirements of generic substitution.

    Retains the authority of physicians to call for Dispense as Written or DAW. This is identical to the authority they have with generic substitution.

    Ensures pharmacist communication with the patient about the substitution, in the same way they are notified about a generic substitution.

    Because biologic products differ from generics in complexity and are not identical chemical products, HB 751 / SB 542 ensures there will be transparent communication between pharmacists and prescribing physicians to ensure the patient’s medical record reflects which specific product(s) have been dispensed. This information can be relayed after the prescription is dispensed to alleviate the need to wait for pre-approval, as current law requires.

    Why support HB 751 / SB 542:
    HB 751 / SB 542 recognizes the growing use of interoperable electronic health records and electronic prescribing records, allowing such systems to be used by a patient’s health care team to communicate regarding a patient’s complete medication history.

    HB 751 / SB 542 will streamline the substitution process by allowing pharmacists to substitute an FDA approved interchangeable biologic without first seeking approval.

    HB 751 / SB 542 will increase access to lower cost drugs for patients. Biosimilars are forecast to lead to a $44.2 billion reduction in direct spending on brand-name biologics from 2014 to 2024, according to the Rand Corporation.

    We are among the Texas patient and provider groups that have studied interchangeable biologic substitution and agree with the principles for safe substitution included in HB 751 / SB 542. Please vote yes!


    HERE IS the information from the Arthritis Foundation and some of the other organizations supporting the bill.





    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
     

    Wanna Get Posts via Email: