Showing posts with label Arthritis Foundation. Show all posts
Showing posts with label Arthritis Foundation. Show all posts

Friday, January 26, 2018

Arthritis Foundation and Washington DC March 2018!

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



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

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

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


Wednesday, August 23, 2017

Letter from the Arthritis Foundation to Paul Ryan Speaker of the House and Congress!

 

 We all need to be TELLING OUR STORIES TO CONGRESS, THE PRESIDENT, SPEAKER OF THE HOUSE, AND OUR STATE GOVERNMENTAL BODIES ALSO!!!


FROM FUNDS FOR ARTHRITIC ILLNESSES, AUTOIMMUNE ILLNESSES, AND CHRONIC PAIN, THAT OFTEN FOLLOWS THESE ILLNESSES AND MANY MORE... WE MUST STAND UP AND TELL IT LIKE IT IS... NO LONGER CAN WE SIT ON THE BACK BURNER AND ALLOW THE GOVERNMENT TO NOT DO THEIR JOBS IN HELPING US, AMERICANS. WE ARE THE NATION, AND IT'S TIME THAT THIS GOVERNMENT PUT THE PEOPLE FIRST!!!!

 






http://www.arthritis.org/Documents/Sections/Advocate/Regulatory-Letters/AF-Letter-to-Congress-Leadership-on-Health-Reform-Fixes.pdf




Friday, November 18, 2016

Throwback Thursday! WEGO BLOG #HAWMC a "phost" from the past? (Christmas Eve 2014)


WEGO HEALTH Bloggers Challenge for 2016 - 'Throwback Thursday" One of my blogs from the past and why I picked it to go back and "share" it again.



 Many of you know how "messed, mixed, and flat horrid most of my year in 2014 was. This post explains a great deal of what went on, and why 2014 had an incredible start, I got to go to Washington DC for the Arthritis Foundations Annual Summit and although I had been down with a severe Lupus Flare, I had been to our Urgent Care the Friday before I was to leave and the doctor who knew a great deal about Lupus, since he suffers from it also, gave me enough corticosteroids for a horse I think (LOL, well not quite that much but enough to make me feel like I was brand new by the morning at 4AM I left for DFW Airport, for the flight to DC!


Little did I know what would happen that last day of the Summit March 26th, 2014. A horrendous nightmare of an event, that forevermore changed my entire life. There are days it still effects me, even now. So, here is the post from then:

http://www.autoimmunearthriticsystemiclife.com/2014/12/christmas-eve-2014.html

Since the post is pretty long, rather than try to post all of it here, I decided to just post the URL (link) to it. That was a year of hell to say the least, then 2015, was not much better... I DID get the honor of being a "Platinum Ambassador" in 2015 BUT, did not get to attend the Summit that March, for reasons why in 2014, along with other issues that happened due to that "eventful" day. 

Then, thinking I would "start new" for 2016, only to become, someone without their own caretaker, that became a "caretaker" for my own Mom, who up until January 2016, had been in pretty good health. Little did we know what awaited us the first 6 months of this year...



Monday, November 7, 2016

WEGO Health Bloggers/Writer's Challenge 2016 - Day 7 - How I chose to start my Advocacy Work & How I felt when I made that decision

Day 7 - WEGO HEALTH Blogger/Writer's Challenge 2016

"How I Chose to become an "Advocate" & How I felt about that decision"

I had really already been a "voice" in many ways well before I was diagnosed with RA, Lupus and Sjogren's. Before those came into play, I suffered with Migraine's from the time I was 17 years old.

I was also wanting to be in the medical field almost all my life in some way. Early in life, my thoughts were on becoming a nurse. As time went by, I married, had my son, then a few years later, remarried, and had my daughter, the idea of going to school full time in order to become a nurse was almost impossible. I was mainly the "bread winner" of my home, and my paycheck really needed to be there in order to pay for the house, car, and for all that my children needed as they got older. 

I had a chance when the kids were around early teen years to go to Nursing School full time and it be completely paid for by the hospital I was working at, in the Business Office. I did pass #1 on the Exam to get in, but then it was the "money" issues, of me having my paycheck completely cut out for at least two years, that made me have to decline going to college full time. Although I took classes at night and got my Associate Degree in more of a business light, the medical field has always been in my "blood". 

I seemed to "absorb" all things "medical" in nature. After being formally "diagnosed" first with MCTD, then soon that changed into Lupus, RA, DDD, DJD, Raynaud's "Hyper-joint mobility", Sjogren's and that list grew on, I then "knew" first of all, the Heart Attack I had at 40 years old, had to have something to do with the RA and Lupus. Although when I was 40, I was the "picture of health" ate properly, exercised daily, watched every type of food I ate, was the exact weight I should be, yes, I had a heart attack. At the time the doctors said the huge amount of stress I was under had caused it, which I am sure played a role, but I was SURE back then, that my Migraines, joints issues, that had already caused me to have several major joint surgeries, plus other things in my health that just did not add up, yet not one doctor took me "seriously" for another 10 years or MORE, before I finally got the diagnosis of "autoimmune disorders". Thus at 50, I suffered another heart attack. 

Now, back to my advocacy work. I was already writing a book about my "health issues". The doctors that had been great, and those that treated me like I was some "air-headed, over anxious blonde" because as we have come to find out "Chronic Pain and Illness can often be UNSEEN by others in our lives - Invisible to those around us, even physicians". 

Back then women were also kind of considered "off the wall", depressed, anxious, stressed and that ALL of their "illnesses" were basically psychosomatic, rather than being looked upon as most men were. A man walks into the ER or doctor's office complaining and they are taken seriously. Back then and still it happens, woman can do the same, and we get the answer YOU need a "shrink"... this has changed for the better and does not happen as much, but back then most women were just "crazy", when they complained, especially of pain. 

So, when I became interested in finding out how I could get MY voice heard, other than my writing, I turned to Facebook to do some research. I also began doing searches on the different illnesses, diseases and syndromes, and came to find out there was an entire realm of "advocacy" places, where the PATIENT'S VOICE was CRUCIAL!

No longer was it just the professionals that were hailed upon for answers, but us, those that suffered with these diseases had a voice in groups, by jointing some of the organizations, and even going right up to Washington DC (which I had long said I wanted to stand at the White House Steps and TELL MY STORY) ... and I came to find out, that is exactly what patients were doing! That the Arthritis Foundation, WEGO Health, the Lupus Foundation, the IFAA, and so many other of the non-profits were "enlisting" us, everyday, regular patients to tell our stories, and move those that could help us by money for research, by giving people access to clinical trials, helping to get our voices to the experts, thus that is what I did.

I dove in head first, to a couple of organizations, and I was excited, thrilled, terrified, star-struck, and scared all at the same time! When I was able to attend the Arthritis Foundation's "Capitol Hill's Annual Summit" and DID GET TO tell my story to some of the Congressional men and women, I truly felt that I had accomplished a greatness. That is when I also wanted to tell everyone else, that they TOO, right from their home and computer, can also make their voices heard. They are important, and crucial to making the diseases stand out, where we can get answers, get proper diagnosis', get the care, medications and specialists we need in order to survive all of the horrid illnesses, we've had to endure for much too long.

#HAWMC

Wednesday, March 2, 2016

YOU CAN Make a DIFFERENCE WTH THE ARTHRITIS FOUNDATION ON CAPITOL HILL FROM YOUR HOME!

I share this with you! Since I will not be able to attend the AF Summit on Capitol Hill due to having cervical neck surgery, I am definitely going to be an "advocate" online! This link takes YOU to a letter, that you can personalize So, even if you can't make it to the Summit, you can and tell your own story about how AF is effecting you, your family and so forth. I sent mine in yesterday! ALL of these will be taken to Capitol Hill and given to Congress at the Summit! YOUR can MAKE a DIFFERENCE even from your home for the AF Summit on Capitol Hill!

HONESTLY, I FEEL BADLY THAT I AM NOT ABLE TO BE THERE THIS YEAR AND REALLY WANTED TO ATTEND! I LOVED IT IN 2014, AND HAD HOPED THIS YEAR THINGS WOULD ALLOW ME TO GO. MY NECK SURGERY IS ONLY A PORTION AND COULD HAVE WAITED, BUT I ALSO HAVE A MOM, WHOM I FEAR COULD BE SUFFERING FROM SOME TYPE OF DEMENTIA, OR WORSE ALZHEIMER'S. THINGS ARE NOT GOOD AT THIS POINT, AND I FELT SINCE I AM HER "ONLY CARETAKER", I COULD NOT LEAVE HER THIS TIME. SO, I MADE THE CHOICE TO TRY AND DO EVERYTHING I CAN TO "MAKE A DIFFERENCE" ONLINE, THROUGH SOCIAL MEDIA, TO SENDING LETTERS TO MY REPRESENTATIVE BARTON AND TO CONGRESS, AND LETTING THEM KNOW MY STORY! 

YOU TOO, WILL MAKE THAT DIFFERENCE. YOUR LETTERS ARE ALMOST AS GOOD AS BEING THERE ON CAPITOL HILL!!!! 


 

Tuesday, December 1, 2015

TODAY IS THE DAY! #GIVINGTUESDAY IS HERE.... HOW WILL YOU MAKE A DIFFERENCE? Your gift from the "heart" is the best "gift" YOU may receive of All!

The one day our entire "world" is in unity to "give" to those around us... whether you give of your time, monetary gifts, helping someone, giving blood, any and all kinds of ways to give of yourself, or of your time....

Here is some information about #GIVINGTUESDAY! And some ideas about the ways YOU can make a difference!

http://www.givingtuesday.org/




https://www.youtube.com/watch?v=NTKfz4Eo-oU&feature=youtu.be





http://www.arthritis.org/






 http://weblink.donorperfect.com/NMDR_Donations










#‎THXLeads2Giving‬




 

These are but a few ways YOU can give! Even if there is something not listed, or a special place you would like to support, do that... this is the one day to give as your heart tells you. I've found that giving of yourself can be the very best "gift" of all!



 

Wednesday, June 10, 2015

Lots of thoughts and prayers needed now...

I can't really go into lots of details at the moment, but there are some really life changing things going on at this time for myself, and my family.

When you are chronically ill, and or in chronic pain... at the first you may never have the thought about HOW MUCH your life can change. Then as the doctors visits, medications, tests, surgeries, fatigue.... and so many things change, physically, emotionally, mentally... all aspects of what used to be "normal"... can be gone within a breath's space...

Then you have two people, one that has been "healthier" that could stand in for the other, when illness or flares hit... and all of a sudden that person is also either as ill as you, or even worse. So, that is when nothing is the same... you may think things will improve, we will find a "new normal".... and it just takes time, patience, tenacity... will power, respect, and love to finally find whatever can go on in the future. Yet, a "dam" appears... the river of life that you felt was so awesome, suddenly turns into a raging force, driving one in one direction, a fork you may say, and the other, suddenly winds up in the opposite direction.... and that is when "trying to piece back your life" can either be not really going to happen, might happen, or usually you finally KNOW, things must change... and change drastically, for both of your sakes...

As I said, I can't go into lots of details, and for now, I think those that do know me, and have an understanding of all of the drama, the illnesses, surgeries, doctors, and pain... from the physical, to the emotional, mental, and daily life - has all bundled up into a huge knot, and you just cannot manage to go on that way.


We are NEVER guaranteed anything but to "live" and then to "die".... in between things can be smooth, even, rocky, a landslide, and so often we are left wondering why the hell this happened? All of the questions, why am I being punished? Am I a "bad" person? Why can't I just have a break? Why can't something be "easy" for a change????

None of us know that answer. And throughout my entire life, most EVERYTHING has been a challenge. There are not many things for me, that have came "easy"... I worked, fought, crawled up the mountain, as the stones dug into my knees.... and slid back down again.... and I do know that only through FAITH and HOPE can I continue to one step at a time, moment by moment, then hour by hour, day by day.... week by week... and then months... years... and one day when I am no longer on this Earth... then all shall be revealed.


So, I WILL continue on with my 3rd book... and hope to finish it up on schedule by the end of the year. I WILL continue to be a voice, activist, advocate, and ambassador...
Lord willing, and my health continue to half way act right.... and hopefully the brain fog, pain and suffering may hopefully have something done about soon... either by surgery, by new medications... and so forth...

I shall give more information as the next days go along... so PLEASE continue to come and join in on my blog... and for those who have always been here to support, encourage, provide strength, faith, and prayers... I am so very grateful for all of you....

Friday, March 20, 2015

RA Connections - in the Texas/OK area - IN April!

This is awesome!!! Everyone in these areas of Texas or OK this is the time for you to get even more involved!!! I am planning on going to the one in Addison TX for sure! #RAConnections

Tuesday, February 3, 2015

RA, Lupus, Sjogren's - New Symptoms? another Illness? and even the thrill of "Good Stress" can cause a flare...

Life continues to buzz by faster than a speeding bullet, and faster than a rocket. I hoped 2015 would begin anew, and slow down a bit to allow me a breath or two. After 2014, and ALL that I, along with family went through, my main hope for 2015 was to be more "well" physically, mentally and emotionally. I hoped life would "slow down" to a bit more of a sprint, rather than an all out marathon race, and with that would also come a bit of respit from so many bills, my teeth, Jim's accident, attorney's stuff, going to all of the doctors, and again we could see the light of dawn, after such a black ink darkness of the past year.

It's not that things have been "bad" as of yet. Although the first of every year brings another set of stressors many of us have to deal with. If you own a home or property, like myself, you probably owe property taxes by the end of January. Like many, my house insurance is usually due about that same time, along with income tax filing for many, worrying about a brand new insurance for my Mom and myself (we changed from Humana Medicare Advantage over to United HealthCare HMO Medicare Advantage plan)... and I knew there would possibly be a few kinks in the entire change especially for me, since I have so many medications to have filled. Of course all of that had been resolved with Humana over the several years I had it. In fact, I guess I had Humana from 2006 forward up until this new year 2015. I had finally narrowed down most of their stupid hoops that myself and my doctors had to jump through. So, as I knew I am having to go through a few red tape situations in order to get my medications refilled.

I am also dealing with something involving my stomach. I am not sure exactly what the issue is. I realize that all of the medications I must take daily, does not help at all. Yet, I've been taking the majority of them for years now, and as long as I take my Meclazine for the vertigo issues, I rarely had severe nausea issues. Over the past 5 or 6 months, it seems I am nauseated more than not. I am even taking Promethazine and now having to take it daily. Part of it, I am sure is stress. Stress over my own illnesses, medications, bills, and what needs to be done. Stress over Jim's health situation and knowing there maybe many things we come to have to realize that he will never be able to do again. A piece of me truly thinks that many things like driving, walking a long distance with just the cane, doing most things are the house chores, especially anything to do with finishing up the remodeling, laying floors, painting and so on. His balance is still so "off" that there is no way he can stand on a ladder what so ever. He can't keep his balance for very long at a time now. As much as I want to believe it will get better this year more; since it will be a year in March on the 26th since the wreck happened, I just don't think that any more time will make him any better doing some things. As we have both learned since his accident, balance is almost more important to "life" and what you do every day, than walking, running, picking things up, getting on ladders, bending over. Even riding our exerciser which is kind of an "eliptical" one, we saw immediately it was his balance that really through him off to the place I have to stand beside him in order for him to ride it. So, strength at times is not as huge of an issue is the balance situation is.

Along with this almost daily nausea I am having, also comes a fatigue that can at times be worse than my experience with it through the years since being diagnosed with RA, Lupus and so forth. For about 2 or 3 years I didn't sleep much at all. I was up and wide awake by 4 am at the latest. Then all of a sudden, and we are staying up a bit later, but here lately I am not waking up until 7:30 am most mornings. So, I continually feel I am running behind. When I was getting up several hours earlier I could get more accomplished. Now, by the time I am up, and turn around it is 2 or 3 pm. The days just seem to be going by even faster than last year. I also know that with the RA, Lupus, Sjogren's and so on down the list of my health issues, my stomach issues could be taken as a part of those. Severe headache, nausea, the fatigue... the muscle pain, and joint pain, all sign and symptoms of most autoimmune diseases.

Yet, you know how you feel at times when you just "KNOW" something else is going on. I can't explain it, but whatever is going on now, seems to be "different" than the symptoms of what I've been diagnosed with.

For one thing, I've had an "extra" beat with my heart now for a long time. I never really was concerned about it. My cardiologist knows, and she has me on medication that keeps it under control. But, a few days back, I had a new type of happening. It was like my heart would be fine one moment, then it wants or feels like it runs really fast for about 4 beats, and then goes back to "normal"... it happened through out the day one day last week. In fact I was so concerned about it, I had called my doctor. She could have see me the next day. Then I woke up with the most severe headache, and fatigue, with the nausea so bad, I had to postpone the appointment. I actually have one with her on the 13th of this month, so I decided to wait until then, unless it happens again before my appointment.

I had came across a story about a woman that was born with a heart defect. They found it when she was 3 months old. For many years, it was under control with medication. When she was in college she began to have problems with it, and later when she was about 39 years old, had to have a heart transplant. It was truly an inspiring story, yet some of her symptoms that she had really blown off as nothing were exactly the same thing I've been feeling. The severe fatigue, she was having bad headaches, and being very nauseated, plus noticed shortness of breath. Well, I had been noticing over the past few months that I complain about sometimes feeling like I am short of breath. I also passed it off as nothing, until I read her story. Now, the one reason I would think it could be heart related is for one, all of the AI illnesses can effect the heart. Two, I have had two heart attacks already. So, that kind of caught my attention, as I was trying to piece the puzzle together as to what is going on with me. Honestly, I have preferred to ignore it. So, other than some "Google" research, I have tried to put it out of my head.

There are way too many things on the agenda I need to attend to, and having some type of heart issue, is NOT what I want to deal with at all. Of course, I realize no one wants to think they might have something going on with their heart. But, what I do have to face, is that statistically I am more likely to have problems, than those without AI illnesses, and/or that have not had 2 MI's already.

Of course, I've received the honor of being able to travel back to Washington D.C. in March, for the "Summit on the Hill". The Arthritis Foundations Annual Event, where we go in as patients or patients families, and tell our Congress People about our stories, and what we want to see accomplished to help those out there like us, that may not be able to actually tell theirs like that. I went through the whole year last year and made "Platinum Ambassador". So, that gives me the opportunity to get the "grant" from the Foundation that pays for my flight, lodging and just about everything other than "personal items". So, that being said, and also as I began this, I am totally elated at the honor of getting to go back again this year. Yet, it brings on a whole new agenda of "good stress", honestly. I've got to be concerned about driving my own self to DFW, which is about 65 miles or so from my home town. Parking in long term parking, getting myself to the proper place for my ticket, going through all of that nightmare, and then getting to DC in time for Monday mornings first meeting, which is at 10:30 am. So, thankfully I do get to fly in on Sunday!!! They confirmed they would cover an additional day for me to come in, since I am flying from a fairly long distance away. But, even with that, trying to pack where hopefully I won't have to check a bag, getting their, settled in, and then having to fly out on Tuesday evening, AFTER our last part of the day on Tuesday. So, again that makes for a very long flight home, getting into the airport back in Dallas very late. Then driving myself back home in the wee hours of the morning from DFW. Fortunately, maybe traffic won't hinder me either way.

I've also got the "stress" about my birthday on the 15th of February. Of course it is much better to at least "look forward" to having one, rather than NOT looking forward to it. Yet, to know I will turn 55 years old in just a couple of weeks really terrifies the hell out of me. As my Mom and I just talking about it. How quickly the years have seemed to pass by. How it seems like just yesterday my kids were born, or I was little and having my birthday parties, and all of those years of youth have just melted away like a molten river of lava down a steep hillside.

We (meaning I) at times became complacent in life. I guess in our younger years, we are so entirely engrossed in jobs, school, college, kids, homes, bills... and everything we incur and that occurs during our robust years of a more youthful time in life. So, we turn around once, look in the mirror to see a young adult making their way through this place we call the world. As we make another turn, it seems the decades have past us by all too quickly. Then if you happened to have came into a life of some type of chronic illness, whether it be cancer, or an autoimmune illness, heart problems, diabetes, and many other conditions that can crop up in the blink of an eye, we begin to want to look back at what "we" did or did not do to cause this. Then all of a sudden, classmates we graduated with lose parents, or worse the classmates pass away. Nothing "stings" quite as badly, as finding out someone who is YOUR age suddenly has gone to be with others in heaven. That one can really stab you where it hurts. It is definitely a wake up call.

So, with all of that comes the "what ifs".... what if I had not married and went onto nursing school? What if I had completely finished my 4 year college degree? What if I had stayed in California, or Seattle? If I "had" or "had not" done certain things, would I not be suffering from the ties of disease that bind me now?

I find myself with way too many questions in life, alas not nearly enough answers for them. I feel often "less than" because I honestly don't have the energy and stamina to "do more", "be more", participate more. What if I could still go snow skiing, on more trips and vacations, and was not so tied to the strings and arrows of chronic pain and illness?

Then I actually witness someone more than likely as ill or if not even more chronically ill than I am, and it appears they can get more done. They do have the stamina, strength, energy and wear with all to withstand and write best selling books, or poems. Or they do much more in their activist advocacy activities.

I have PROMISED MYSELF, and to my very BEST that I CAN do INTEND on completely finishing my BOOK by the end of the year and having it published. That is where I stand, and my stance is. If that means "robbing spoons" from other daily things I do, then I need to learn to manage my time wisely. Putting MORE of my "spoons" into the writing of the book, and taking some time away from things such as Facebook, plus other items I tend to do, rather than writing.

I WILL always be posting here... and never will I allow myself NOT to continue my blog. It is truly my LIFELINE to ALL OF YOU! And it is for ALL OF YOU that I WRITE THIS NEXT BOOK!!! For myself also, but more for all of those out there struggling through the mysteries of life, and the good, bad, really bad and depending on someone to help guide them through the darkness of despair over chronic pain and illness.

You see, it is NOT just our physical bodies that are so terribly effected by these chronic diseases. It is the very core of our being, our hearts, minds, soul, family, spouses and friends... so it is a journey that is to terribly long and difficult to deal with to feel alone in doing it.

So, today... I dedicate each page of the book I am writing to YOU!!!!

















Monday, January 26, 2015

New Year - New Revelations - New "lease" on Life, still all wrapped up in an Autoimmune Illness World and How to make dreams come true...

I have under my own terms "swore off" procrastinating about the writing of my 3rd and in fact 4th book. I had a very good email come in this morning from "Create A Space" that had an article about how to "put off" the writing of a book. We can make up a thousand and one excuses, especially if you a chronically ill, or like myself chronically ill, dealing with some symptoms that can really make daily life a challenge. To top that off, now I am kind of the "whole deal" of being a care taker for myself and for Jim. Even though within a short couple of months it will be a year since that fateful car accident, that sent me reeling through a "time space" that still I am not so sure of how I got through it all.

Honestly, I am not sure I truly have resolved all of it in my own head, heart, and soul. I question my own illnesses, and as of late, have developed more symptoms, that truly have started to concern me. I am not so sure that they are from the autoimmune illnesses, I am already diagnosed with. I have this "gut" feeling... that my "gut" feeling (n pun intended), along with the nausea, the extreme fatigue, all of the lower back pain, leg pain, of which even woke up me at 4 am this morning, and sent me rushing to get some medication, and then even though I really wanted to get up early, I remained on my sofa bed until about 7:40 a.m. That had not been my normal behavior for the many months that followed Jim's car accident. I rarely slept. Some days I wished I could go "find" those nights and use them to further the writing of my books.

I am trying to properly place myself where I desperately need to be in order to get this book written by the end of the year. Yet, if I don't heed the advice that I read just this morning by a group of very good writers, I will continue to "put off" the book and never get it written.

So, over the next few months, I will definitely keep my blog "fresh". I won't allow myself not to publish things and write events and so forth here. You, my audience is extremely important to me. So, the last thing I want to do is lose you due to me not posting and keeping current information here, because eventually my heart tells me some of you will be the "audience" that helps my 3rd book to take off enough that I can give a good portion of those proceeds to a couple of very important charity/non-profit organizations that I feel are crucial to the findings about everything autoimmune. From the very beginnings, to the fight going on admist researchers, grant money, patient and clinical trials, standing up to our Congress both state and national to get them involved in such a crucial matter to all of us here in the USA, and the incredible work of those in many of these non-profits who are no longer just "charity" organizations.

They are SO MUCH MORE than "charity" types of businesses. They are the very operatives that go in "fighting" for us as patients, as caretakers, as family members dealing with these illnesses, and to get the funding needed to battle, and win the raging war over how the ruthless diseases destroy so many lives. Whether through loss of jobs, family problems, endless medication and doctor bills, fighting with insurance companies, pharmacies, and the list is endless of the daily ordeals we go through to try and "get well"... or at least feel better, find remission, and a state of "no more disease" to have to contend with.

I promise to do my very best to keep this blog fresh, full of new posts and information while I dig much deeper inside of my own heart, brain and soul to complete this 3rd book. And I know beyond a shadow of a doubt, I WILL accomplish that.


Tuesday, December 23, 2014

The Arthritis Foundation and Our "Victory" from the 2014 Summit!

I am so elated to know my "voice" was in part what made the "Summit" on Capitol Hill a Success Story for Us as Patients, Caregivers and more, along with such an Amazing Success for the Arthritis Foundation!!!!!



It is with pride that I talk about my own personal story and share it through the Arthritis Foundation. I know in my heart they truly care about us as patients. I am so pleased to be able to help out. I am also so proud to be in a very "elite" group which is the "Platinum Ambassador's" for AF!!!!

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

Join Us at the Annual "Jingle Bell Run" in Ft. Worth TX at Burnett Park TODAY!!!!!

I so wished I could go. I have been just in such horrid pain with I guess a very bad Lupus/RA flare, and Jim is not feeling the very best, so as much as I want to be there in person, I will be there in heart and spirit!!! 

I will keep everyone updated as everything takes place. It will be a fun time for everyone, so please have a great day and you can see it all at the "Jingle Bell Run".

by the way, see the website for ALL of the locations of the run across the nation also!!!!!!   http://www.arthritis.org/get-involved/jingle-bell-run-walk/


http://fortworthjinglebellrun.kintera.org/faf/home/default.asp?ievent=1112128

Tuesday, December 2, 2014

‪#‎GivingDecember2nd2014Tuesday‬


https://www.facebook.com/GivingTuesday?pnref=story







My "giving" today will be "giving everyone" an idea of how to give on this "Giving Tuesday!" Whether you are giving a "tip" to your guy that takes the groceries to your car, your beautician a larger tip, giving to one or more of your favorite charities, giving a lift up to an elderly person out of a chair, giving a hand putting a neighbors trash out at the curb.... maybe giving a hug to everyone you see today, and a handshake and tell them you appreciate their "service"... at the pharmacy, the bank, the doctors office... whether you give a lunch today through a local food bank, or donate blood to the blood bank.... it is not how LARGE OR SMALL the gift is... it is the "giving" that counts. Give a compliment, give your heart, give unselfishly, give information, directions, information, there are SO MANY ways, you can give of you, your time, yourself... just give... 

I have posted some places on my Facebook page that are non-profits and so forth that you can give to...whether it be the Arthritis Foundation, The Diabetes Foundation, to AIDS, to the homeless, to the people who need, and to those who just need a smile... give hope... for giving of oneself, is the gift of hope!!!

This NATION and this WORLD above ALL NEEDS HOPE!!!! It can start with "you" and "giving Tuesday!!!!" 

And it would be so incredible if giving Tuesday, turned into giving Wednesday, Thursday, Friday, the holiday, the month, the season, the year.... just one "good deed" can bring millions... so please take a moment, and give... a prayer, a "thumbs up"... Hope... 

With my gift to you today... Rhia... 


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, October 19, 2014

Random Acts of Kindness Day October 21 and also additions to my blog

For one, October 21st has been named "Random Acts of Kindness" Day.... and as I said on Facebook... I try my best to always thank people, tell them to have a blessed day, to give them the respect and appreciation they deserve. To stand there and have to check out people on some days, I know has to be almost torture... People tend to not be in such a great mood when their money is flying out the door with everything so expensive ... thus sometimes that person behind the cash register gets the brunt of others frustrations...

So, try to make someone's day and it can be anything, big or small....

Also I have been working on my blog now for a few weeks... I've changed some things around, added some stuff, put stuff in a different place and I have also added lots to pages... the one "About Me" I wrote quite a bit on today. So, as you go through my blog, be sure you check out the other pages... I've added some to the "News" page, and some to the Illness and Medications pages... and I will continue to advance and add more and more as the days go...

I really want to make my blog SHINE and people really want to come here, so I have to get it really going well, so people will want to read it.

I will be posting less and less on FB and more here as you have seen me do...

That way there will be a link on FB to the blog.... and you can come here to read all about the news, information, medications, and so forth that is happening to me...

Be Well, and may your week be wonderful in many ways... Rhia

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