Showing posts with label IFAA. Show all posts
Showing posts with label IFAA. Show all posts

Thursday, December 19, 2013

My Very Own Way I Can Show "My" Little piece of the World I "Represent" International Foundation for Autoimmune Arthritis

             Representing International Foundation of AutoImmune Arthritis



I did not get to put these photos up yesterday with the doctors visits and so forth. Holidays, RA, Lupus, pain, stiffness, medications, stress, all rolled up into one huge ball when you are right in the middle of any type of Chronic Pain, Disease, and/or Autoimmune Arthritic Diseases.

I have shared the "story" about this bracelet (that by the way I AM WEARING)! "proudly" I may say also. So, proudly, I find myself not wanting to take it off. So, it is a wonderful idea that there is one of the "rubber types" that come with these. That way I can shower, do laundry, housework, or just about anything, and still have "IFAA" right on my hand, and at my side! Tiffany "hand makes" every one of this original "Buckle Me Up" Bracelets just as she did from the very 1st one. Which is how IFAA took its' first baby steps, into a "Movement" and then quickly to a "Non-Profit" Foundation, which is moving ahead for patients by leaps and bounds! These are a bit "blurry". I took them hurriedly yesterday morning. But, I'll get more today that are clearer and much better. But for now I just have to share these!!!





A bit about my own "Active Volunteer" journey. I happened to have met Tiffany Westrich Robertson, who is the "founder" of what now is known as the IFAA. Through a mutual Facebook friend, I found out about an "art" show that would benefit RA, Lupus, Still's Disease, Juvenile RA. Sjogren's, MCTD, UCTD along with the other autoimmune arthritic diseases that I suffer from, but I also am and have been a very strong ADVOCATE for in getting things changed for us as Patients, Caretakers, Friends, Family, and the Medical Profession. I had sent a message to her about my two published books! I thought they may help the "cause". So, I offered to send a copy of both to her for the "art" show that was to benefit this cause! I got to be friends with Tiffany and follow her life a bit through Facebook. I quickly found out her story about RA, and the same "rivers" that flow way to long before we get out of rushing waters of these illnesses was her journey also. I found out from there about her foundation, volunteering, and I knew beyond a shadow of a doubt I needed to be an Active Volunteer! Thus here I am.... I share these with you, and they are a proud reminder of the difference I am watching unfold through IFAA!!!!   Rhia


Here is what the beads and the design mean on the "Buckle Me Up" Bracelet as it was called in its' beginning.

The 3 silver beads & 3 black beads represent all people working together to make a difference. Red is the color of strength & signifies the strength we all achieve in numbers. The final silver bead symbolizes moving forward to find more people to join the movement to raise a global awareness about Autoimmune Arthritis diseases ...
"The International Foundation for Autoimmune Arthritis".


The "IAAM" was the "infant" stage of IFAA. Beginning as a "Movement" - it was named "International Autoimmune Arthritis Movement", then "moved" forth to be the IFAA.
So, the "IAAM" means (on the rubbery bracelet)

I am..
A Leader For Change,
Hopeful,
A Believer in Progress,
And Rebranding Stereotypes.
I Am an Advocate for
Autoimmune Arthritis Awareness.

Introducing the VERY 1ST Patient-Centered RESEARCH Project - IFAA sponsored by Janssen Global

I was so totally thrilled yesterday evening when I got this announcement! Excited for IFAA (International Foundation For Autoimmune Arthritis), for myself as a New Active Volunteer & for ALL PATIENTS out there have suffered too long, waited sometimes years, went through the pits and fires, walked through what seemed like a long black hallway, before finding a real "diagnosis". Sound Familiar? Yes, it describes so MANY of us around the globe!

               Here is the "official announcement" from IFAA of the very

                                 First Patient Centered Research Project!


http://www.ifautoimmunearthritis.org
So, after much hard work by some dedicated volunteers, which story started with one young woman determined to change the Face of How Those with Autoimmune Arthritis would be helped!

As you can see, we have Janssen Pharmaceuticals Inc. to thank for helping with such an extremely important study! Please take a look at their website to see they believe in patients being their inspiration!


This is truly a new step to the Future of Autoimmune Arthritis being diagnosed early, being treated earlier, less damage, and a better quality of life!

~~~~~~~~~ Congrats! To the both of them!!! This is a remarkable and memorable day ~~~~~~~~~

Wednesday, December 11, 2013

A Beautiful Bracelet & The Lady Behind the Incredible International Autoimmune Arthritis Foundation

How ONE Person Can Take something out of "nothing" and turn it into An Amazing Foundation For those Suffering from Autoimmune Arthritic Illnesses.







... everyone--- this bracelet signifies so VERY much to those of all who suffer from the infliction of autoimmune arthritic diseases... And this dear woman that makes them by hand each one has brought so much HOPE to so many people AROUND THE GLOBE!!! I am absolutely so proud to tell everyone that I am an "Active Volunteer" for the IFAA!!! And I could not ask for more.... Rhia I will also get this posted on my blog.






I wanted to match the "reasoning" behind the bracelet and what it stand for. First of all Ifaa Tiffany Westrich-Robertson makes each and every one of them by hand. this is the way she made the very first one, thus the "Buckle Me Up Movement" began. She still continues to make them special order by hand. So, If you are wondering "why the beads" and what this stand for in it's entirety here goes. "The 3 silver beads and 3 black beads represent all people working together to make a difference. Red is the color of strength and signifies the strength we all achieve in numbers. The final silver bead symbolizes moving forward to find more and more people to join the movement to raise a global awareness about Autoimmune Arthritis."
-This explanation is packaged with each bracelet.



Also there is a "story" behind the entire background of how this bracelet was initiated by the "Buckle Me Up" Movement. From there it has transitioned twice, first to IAAM (International Autoimmune Arthritis Movement" to evolved almost like a butterfly in a cocoon to something incredible which is now a "fully Non-profited Organization known as the "International Foundation of Autoimmune Arthritis".. So through it's "growing" spurts to become a group of people so incredible is remarkable and so is the story behind it. Thus it began by a thought and a bracelet just like this one. When they were still (IAAM) that also have a beautiful motto behind that too:

( The 3 silver beads and 3 black beads represent all people working together to make a
 difference. Red is the color of strength and signifies the strength we all achieve in numbers. The final silver bead symbolizes moving forward to find more and more people to join the movement to raise a global awareness about Autoimmune Arthritis IAAM, sounded out, is "I Am". While we have change our DBA (doing business as) name to the International Foundation for Autoimmune Arthritis (due to the addition of research to our scope), the awareness portion of this organization is still a "Movement" of awareness. Therefore, the IAAM is on the awareness bracelets. In addition, the "Buckle Me Up!" Movement is written inside to remind each person who wears it where this all began and how far we've come as a community.

Our Message for this Autoimmune Arthritis Awareness bracelet focuses on this statement. Each bracelet is packaged with the Message below:

"I Am...
A Leader for Change,
Hopeful,
A Believer in Progress,
And Rebranding Stereotypes.
I Am an Advocate for
Autoimmune Arthritis Awareness." )



(The portions in the () are directly from International Foundation for Autoimmune Arthritis URL: http://ifautoimmunearthritis.org and you can also see their Facebook page at: International Foundation for Autoimmune Arthritis

For myself, this is the perfect opportunity to also tell why this Foundation absolutely means so very much to me. The founder Ifaa Tiffany Westrich-Robertson and her story that she has about how long she suffered well before FINALLY getting a physician that KNEW something diagnosed her, reminds me so much of myself. I also trudged along for years (like many of you) to get "misdiagnosed" with everything from "soup to nuts" as the saying goes. So, after she finally had a grip on the real reasoning behind her years of symptoms, then she knew there was a very strong need in our nation and in fact our world, of getting this out there to say "Hey Wake Up" to doctors, the medical researchers, patients and caretakers, families!!! It was TIME to do something! But what? As myself, I am but one person. I am "limited" in many ways to "get my point across to the many, many people out there that I don't have a way to fully open the doors to a grand eye opening "movement" of sorts. Yet she was able to take something so very simple, and create it, put her story and her whole reasoning for the bracelet online on the right place at the right time... and from the 1st moment of "but one" person, became thousands around the world!!!! So as I said above, I have always wanted to be able to shout out to everyone that will listen, and "heed" what I say to "DO SOMETHING" I feel "my voice" through her own battles has truly been spoken to whom I've always wanted it to. Now at the right time, and in the right place, I've been added to the glorious "fold" of men and women who share a strong desire to make all of this happen, larger, more verbally, online to potentially millions of people, that we need CHANGE> Change that means a "Quicker recognition of "symptoms" by health professionals, A Quicker diagnosis so people can "delay" or even "stop" damage of the joints and the body before it takes its toll", "Quicker medications, that take these illnesses and "kick" them out of the body, or halt them in a way that "remission" and possible wellness are something that can be achieved. and Last but not least "A Quicker, stronger, verbal, out reaching message to researchers, to those who can donate their time, or funds and help a cause have those researchers WANT to study these diseases, illnesses and syndromes to perhaps even "heal" us "before" we even know we are ill. Everything above I've said I feel a strong conviction that through the IFAA, it's Founders, and all of its Volunteers, all and more of these things will be achieved!!!!! I hope you take some time to go to their Website, go to their Face book page, ask me questions for now I am a piece of their "pie" as an Active Volunteer, and go to my own blog. I will be putting up this information, and I blog quite frequently about this group! 

Wednesday, December 4, 2013

More Exciting News & My Blog Posting Helping Elsewhere....



Excited to Blog Elsewhere for An Extremely Important Cause 



Even though I am working to get my "first post" up, since I have been accepted to be a "Blog leader" for IFAA's blog, "Systemically Connected", I wanted to tell all of you! I've been so thrilled about this, that I can't stand to wait any longer!!!! :):) After getting to "graduate" this week from IFAA's "class" to become an "Active Volunteer" for them, I just have to include that I will be posting on their blog from time to time also. When all is in place, I will also have my blog link up in their website, and I'll be listed in the "Systemically Connected" Blog Writers! :):) I am just so overwhelmed, and in a good way about all of it. As just about all of you know, my "advocacy" and helping others fight these autoimmune arthritic illnesses, as well as all of the AI illnesses is NUMBER 1 for me!! Thus my writing, getting a couple of books published, and now as I hope "possibly" to have book number 3!!! able to be published by the end of 2014!!!  (I am not promising anything, because you never know what is in store) but my plan is to try and have it written, and ready for publication late 2014 or early 2015.  That one is so very important because it will be my own journey through the lifestyle of those with chronic illness and chronic pain... and a bit more about my life's path... Anyway, I realize with "health" there are no guarantees... and I fear the Rituxan maybe wearing off sooner than expected. I am having the same pain I had before I had the infusions over the past week, so I pray it is just the weather being so nuts, and not the medication "stopping" to work before the 4 to 6 months it should last. ...more to come... I want to get my blog post on this up and then get busy on a couple more things for today!!!! 



By the way, both IFAA and Systemically Connected have link right on the front page on my blog here. You will see them down on the right hand side below my posts.....



Rhia

Sunday, December 1, 2013

Just a Couple of Happenings in my World to catch you up on...

YEAH!!!!!! I FINALLY got to finish the project I need to finish!!! My computer crashed out at the very worst moments of my life... I was in the middle of a "graduation project" for becoming an Active Volunteer for IFAA! I was just in the beginnings of working on it, when whatever transformer blew down the street, that took my I-MAC with it! i finally got my new I-MAC in Wednesday, and as I said I think the FEDEX man deliberately waited to bring mine as the very last delivery of the day! He always comes by 3pm. It was like 5pm before he arrived... I thought maybe he crashed his truck or something.. then of course we had to get all of my stuff off of my back up drive and onto my new one. And then settings, mail, you name it, of course, it had to be done. Plus there are SO MANY new features, that I am loving already and more I have to even learn about. So, finally after some Friday, part of yesterday and most of this morning and part of the afternoon, I finished up my research and just emailed it to Tiffany, who was the Founder, and now one of the 4 co-founders of IFAA! I also think I may get to participate in some other activities with another big health advocacy organization! I'll know more this week. PLUS HUGE news!!! I've had a couple of days over the past week almost 500!!!!! people on my blog!!!! I am so thrilled! I am so happy I didn't give up. So, I know it is something that is meant for me to do. I am also going to be a "lead blogger" on another site (one of the Lead bloggers)... there are several... and when that is official I will also post that too.... I finally feel like the work of all the advocacy that I feel it what I am here for is finally coming together! Lots of patience, lots of just waiting until the right moment, the right people, and the right time comes along... I am absolutely exhausted, but I am absolutely thrilled about all of it. 

There are some great things happening and I am honored to share them with all of you. You are the ones that make me keep going. Even when I "see" only a couple of "fans" have been here on one day, those over 400 the next makeup for it! I appreciate every one of you, and my hopes are that each of you will give in a bit off yourself, and comment on some of my posts. It doesn't have to be long and drawn out, but a few quick words about your feelings will always be welcome! As this holiday weekend winds down, and we look ahead just a few weeks until the next BIG TWO are coming soon, I hope everyone is safe, happy, and well. We always hear "take care of yourself", or we catch ourselves saying it, but most of the time, WE think we know better; and for the most part we do know ourselves better, just sometimes we don't "listen" very well!  


I hope to be back on the right track since the new I-MAC has arrived, and we shall see what the surgeon has to say about these darned hernia's tomorrow morning... I'll keep you posted...


Rhia


Friday, November 22, 2013

Technology - In Every Way & the Miraculous Way the Medical World Uses It

Man Kind, Medicine, and Technology...



To Start Off with a bit of an update of my turmoil the past couple of days and a walk through how technology is revolutionizing our Medical World... Well my new I-Mac is on it's way. I decided to forego the Macbook Pro or Macbook Air(as cool as they are), even though I really wanted a laptop. But, I got to thinking about it, and I have my I-Pad! It works as well as a laptop, and is lighter and smaller to carry around. So, even if I were to travel, that would suit my needs, or our needs if Jim goes and needs to be able to watch the client's and their servers. So, I have a 22 inch I-Mac that I wished the heck would hurry up and get here. I was so totally bummed out yesterday. I had been trying to work on my old laptop, along with an external monitor like I did before. This is a I-Book G4, that was bought about 2004 or so, for me. When I was doing web design work, and helping with the business, I needed a new computer and they bought this for me. It only has a 13 inch screen and thus the eternal monitor works to have a larger amount of "real estate" to work on. But, at that time this was one of the faster on the market! In fact Jim and his partner at the time, Mark was almost jealous because mine was faster than theirs. :) But, you don't realize how quickly technology changes until you have to step back "in time" to a computer that is even 7 years old. I know my I-Mac that got zapped two days ago, will seem like it was as slow as a snail compared to my new one on the way. but, being on this laptop has made me appreciate that technology has made so many advances in a time when all kinds of things are happening at a lightening pace. If I think back just a few years ago, I recall no cell phones. In fact the first one I had with the big "bag phone" by AT and T. Man and the "minutes" were expensive. When you think about technology and the medical world, wow, how many things have changed dramatically in a very short period of time. In my lifetime, I've watched knee surgery go from a very huge scar left from the surgery, traction and staying in the hospital for seven days, to arthroscopic surgery, with three tiny little scars and going home the same day after being operated on. Even our MRI, CT, PET scans, mammograms, bone density tests and just take a "run" through in your mind of all of these amazing types of tests that have only been here a short period of time. When I was about 20, I recall have to have a "brain scan". I was taken into the hospital, upstairs at our old hospital here in my home town, before they built our new facility, to a room where this huge machine took a very long time to "scan" my head. It seemed like hours I had to lay there very still, and I recall the imagines, and thinking then just how "out of this world" that seemed. Well in these times, we have advance so far in those realms, that our scans now days can show minute changes in skin, in organs, in our spines, joints, all of our bodies, and do so instantly. Even X-rays. There is no wait in knowing the outcome of an X-ray. Yo know the results usually before you even walk out into the world again. Advances in lab work, in equipment in our Emergency Rooms (save more lives than ever due to the amazing technology), having things like "Care Flight" available, nurses and doctors having better educations, better skills, using computers now for everything from our medical records (enabling doctors to immediately share a patients medical information), to telemetry. We can have kidney stones literally "blasted" to pieces rather than having to undergo being literally "cut almost have in two" as it was not long ago, when my uncle had stones several times. The old fashioned "basket" would not collect them, thus opening up the body was the only way to get them. Surgeries of all types and those changes. Just recently the "De Vinci" surgical computerized system has been introduced. That computer can almost do the surgery in itself. It helps physicians be able to do detailed procedures that once were impossible to do without cutting the body open and exposing the areas that need to be operated on. From pace makers, to internal pain pumps and stimulators. From "open" heart split your breast bone and wire you back to close that incision up to going through a tub inserted into the major groin artery along with a tiny camera saves hundreds of thousands of the once open heart surgeries that were once not long ago a necessity for any type of heart ailment just about. In the complicated world of "autoimmune illnesses" the advancement of tests, medications, and the knowledge now out there has grown by leaps and bounds. I realize that all of us, as patients, feel and know there is NO MUCH MORE work to do about these illnesses and the devastation and have the reek u[on every aspect of our bodies, the physical, our minds, the mental, and the emotional costs are still extremely high. Advancement just in the communication about these illnesses needs to be ramped up by a huge percentage. With early, and I mean extremely early ways to find evidence of these illnesses, we could not only slow down, or put them into remission but actually STOP these horrid illnesses before they ever have a chance to cause any type of damage. Again we have advanced in a huge way comparatively to just a few years ago. The ability to have researchers all around be able to collaborate data from clinical trials. The clinical trials that can now test new advances in medications, that just a few years ago did not dream of having the majority of them or the use of many medications we do have and them being able to be used to treat autoimmune arthritic diseases is saving lives each day. Having "Lupus" even when I was about 35 years old, first of all was a "death sentence basically. LIttle was known about the disease or what it did throughout the body. But, it was known that is was as serious as cancer, if not more. Don't get me wrong, these autoimmune diseases can still be "deadly" and are just as serious, if not more today. But, the difference is the way we are beginning to have so much more knowledge, more doctors that are studying these puzzling illnesses. With our vast changes in the way the world communicates often with the click of a "mouse", moves information to all the world, that once had to be shared by "snail" mail, or written in an article, yet the magazine article may not be seen for a month or more. Now, as soon as the news is out, more often than not, we know all about it via the internet. We are living more years as a whole now. That average age of people has risen dramatically. So, that means not only have we made many advances in all walks of life, but we also have to continue to move forward flowing down that river of human compassion, understanding and knowledge all over the world. WE are no longer just a "nation". We are no longer separated by oceans of water, for we are a united world, that in the blink of an eye, you can be speaking to someone overseas with a few key strokes, the touch of a phone number, or even see one another and speak over the internet on a messenger. Next time you are on Facebook making a post to "friends". Think about where those "friends" are. Whether in another town, another state, or another country, instantaneously you are "speaking" to them, with no "lag time". Each day our world becomes closer together. Each day we should never take that for granted, for it as mind boggling as it is, we even reached to out other planets, to find somewhere out there in the endless vastness of space to find if "life" exists there, and how that may sustain us someday.

Friday, November 8, 2013

A Letter From the Founder if IFAA - Tiffany Westrich-Robertson

She has developed shingles due to this outstanding trip! You will understand as you read her letter below!!!

(Tiffany) As CEO of IFAA, and autoimmune arthritis patient, I understand these diseases and the toll they can take on the body. If you view a photo posted of me yesterday morning, right on this page, I'm smiling, happy, and looking "normal". I'm speaking with the Director of NIAMS- the arthritis division of the National Institutes of Health. A highlight, an honor, a moment I will always cherish not only due to the outstanding work performed by Dr. Katz, but because I'm humbled as a patient to have shaken the hand of a man who works day and night to better my life and those in our community.

Now the reality of how much I truly know about these diseases- how much I understand. I am you, you are me. I flew from Los Angeles to D.C. on Tuesday, prepared for the trip and potential flare for days prior, working from the sofa and resting as much as possible. I knew Wednesday would be a 13 hour day, filled with back to back meetings, in a different time zone, jetlagged and sore from travel. As the day winded down the fatigue was so powerful I sat alone in the restaurant barely able to put fork to mouth, yet still the blur of the days triumphs keep an internal smile inside me that kept til morning.

I took a long bath before bed, preparing for the long flight home in the morning, hoping my body wouldn't freeze in response to the extreme use the day prior. I anticipated a fever, fatigue, and general flu-like feelings, so I planned my outfit for travel accordingly, buttonless/zip-free pants with a pull over top and walking shoes that could be easily, yet discreetly, slipped off under the plane seat in front of me. I then traveled across country home, just 2 days after the original departure, and basked in the outstanding memories of the science heroes I had the honor to meet. I smiled at the thoughts of the CEO's and other advocates I sat next to, shared conversations with, and will continue to walk side by side together in our fight for the community. Then as I made my way back to my home and relaxed on the sofa, I realized all the preparation I planned to ensure a minimum flare was simply not enough. Within hours of landing, here I sit- or barely sit- with an outbreak of shingles that are placed such it makes it difficult to sit or lay comfortably. They will certainly trigger a full flare, joints-tissues-and flu like symptoms, and I may be laid up for a bit. But I want you to know it was all worth it. Every moment of the fatigue, every minute of pre-travel prep, and now every moment of discomfort. It's worth it, because I met scientists who listened, I talked with leaders who want to unite for change, and I was invited to sit side by side the scientists and doctors at the NIH to become the 2nd patient ever to help NIAMS review their grant applications in 2014


I could have posted more pics of me, smiling and cheering for this step towards victory. But as a patient myself, and the leader of this nonprofit, I choose to tell the truth. To let the world know that every single second of my trip was worth the journey. But that journey comes with a price. We may look 'normal' on the outside but when we push, even if we plan accordingly, our bodies' will respond with a vengeance.

I'm not posting this to complain or for sympathy. I am not looking for 'fans' or for praise. I am posting this to show that I am a real patient with real consequences for pushing my limits and doing my job. But this is the role I chose- the role of an advocate. I, and the rest of those with IFAA who also are patients, will continue to sacrifice as needed to ensure our community is heard and changes to research are made.

Did I get shingles and flare due to the trip? Yes. But I shook the hand of the director of NIAMS and sat next to some of the most amazing community heroes...and I'll do it again and again.

IFAA is the first and only nonprofit that focuses solely on clustering together these few diseases in order to solve the equation:
Early Detection=Early Referral=Early Diagnosis=Early Treatment=Earlier Possibility for Remission

We are changing the world the best we can. Every limping, flaring, and blistering step at a time.

Saturday, November 2, 2013

Donate Today & Get A beautiful Bracelet and Matching Earrings on Sale!

While supplies last, support IFAA's mission to create programs that will promote the equation we aim to solve: Early Detection=Early Referral=Early Diagnosis=Early Treatment=Better Chance of Remission by getting your Designer Awareness Bracelet for $10.

Help us help the patient of today and tomorrow. 100% of these sales will be used to create programs and initiatives to solve the equation. 


                                         Wear your support today! 



                               Purchase at www.IFAutoimmuneArthritis.org



lupus ra ifaa bracelet