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

Tuesday, May 16, 2017

World Autoimmune/Autoinflammatory Arthritis Day

 In one week we'll be putting the AUTO in AUTOimmune & AUTOinflammatory Arthritis by hosting a virtual awareness race via Facebook & Twitter - and YOU need to help "drive" the awareness!

Learn more at www.WAAD17.org - and invite others (SHARE!)
— with American Autoimmune Related Diseases Association (AARDA), CreakyJoints and International Foundation for Autoimmune & Autoinflammatory Arthritis.
Take a look at the website, and Facebook page! YOU can find out more at both of those.

It's time to take Autoimmune Arthritic Illnesses, and "run" them off the track! 

 


 

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!



 

Monday, November 9, 2015

"ACR15" (American College of Rheumatology) conference 2015 in San Franscisco!

Since I've been away for a couple of days, I didn't get a chance to post about the ACR15 Conference! From the looks of it, they had an incredible turn out. Lots of non-profits like Creaky Joints, the IFAA, the Lupus Foundation and so many more.

Plus The Rheumatology Research Foundation is celebrating their 30th Anniversary this year and launched a brand new website for it! So, there are lots of great things, events, and research, plus more awards and so forth going out for all of the incredible work done by so many, when it comes to the realms of RA, Lupus, and so many, many more diseases.

An Article About the High Cost of Medications for Conditions such as RA, and how frustrating it is for the Doctors also...

http://www.wvgazettemail.com/article/20151017/GZ04/151019600/1455



New Website for their 30th YEAR - American College of Rheumatology!

http://www.rheumatology.org/Advocacy






Sunday, October 11, 2015

Life drama, illness, chronic illnesses and the Journey to where it leads us. -

Yes! I've done training with IFAA when it was still in it's"baby steps'   and it is incredible to see how much has happened over a short period of time. and yes, Tiffany Westrich-Robertson Ifaa and some of the rest of you knew about me going to Washington DC in 2014 with the Arthritis Foundation! That is one of the most single events I've been in, that made me feel, see, and total know I DID and do make a difference... I actually made Platinum Ambassador, I guess for 2014/15, and still do lots of things for the AF, but also for WEGO Health, and IFAA of course, plus like the blogging for RA week, then the week long bloggers for Invisible Illnesses too.... my blog is FULL of those true "people" that are out here each to day truly MAKE A DIFFERENCE!, plus they help us "learn" that we do help with letters, emails, visits, and keeping in touch with our State and Federal Congress People... it is not go unnoticed as I figured out.... my heart and soul were truly set on doing MORE this year, with my advocacy, activism, Ambassador and so on "roles"... but I also feel I have to keep my blog very current, and if I post daily, or sometimes even more that helps to get the message out to others also... due to circumstances far beyond "my control" with the horrid accident for my other half in 2014, that turned out to be a huge game changer for everyone... then I became ill on several occasions... and was off my RA med - the Orencia, due to the fear of those injections may contributed to the cellulitis and also then the abscess. And I still am dealing with a lump in my other thigh,and the one that had the incision in it to drain is still not well and still drains some... but it is better than before - some of you probably know that I am in the process of getting divorced and in fact I have already "filed the petition" and some other paperwork, and am supposed to hear today about the court date... and of course the "mediation" that the "judge" ordered about the accident did not go well as of yet, that may still change if the trucking company owner decides to NOT go through COURT with a jury and so on.. he is back in the Seattle area,,, then of course I lost my Tazzy - my Pug who was about 13 years old, very suddenly, and she was my life.. her and her "Bub's" as I call my Chiweenie,,, so things have been NOT what I planned for sure, and my prayers are that come January 2016 ALL of that changes and may it be filled with MANY awesome things for ALL of us.... ;)

i am "suffering" from a "thing" I guess you might call it and Ive really never quite dealt with these feelings before. So, I am not even sure exactly how to explain it to all of you, but by chance if I do tell what I am feeling, some of you may have been through the very same or similar situation. I of course have been really what you could call "strung" out emotionally from all that has taken place in my life this past at least 6 months now. Plus I decided it was time for me to get back into a church that I thought I would like, and feel "comfortable" at. In between everything, of course most of you know that Jim and I are legally separated and I have filed the petition for divorce. In fact, I turned in some documents on Tuesday that gave me a court date, which is right after January 1stt... so I guess you could say, once again, I "start over" in life... things have changed and will continue to change, and I am also aware between my birthdays seemingly coming closer together, and that my chronic illnesses, although not horribly bad (especially as soon as I am to see my Rheumy that I had waited 6 MONTHS to get into, never fails.. I have felt like I've been ran over twice for months now, and the ONE day I feel "better" happens to be the day I see him, and it made me furious at my body! Then I look like an idiot, since I had told him for months now about all of the crap going on with the AI illnesses, infections, cellulitis, then an abscess... and I know he probably thought I was a "lunatic"... but sure as HELL, the very next day.... I saw him last Wednesday... on Thursday I felt worse than ever... they gave me a fly vaccine while I was there, but I had even told the nurse I have really never felt "lousy" after the vaccine... maybe a bit achy, but other than that I am usually fine... oh heck no I woke up Thursday and felt like someone took a sledge hammer to my head, neck, body, and everywhere... I had the chills, ran fever, and hurt like I was never going to get over the severity of the pain, my my back, my legs, my arms, and I was so fatigued I spent Thursday and Friday for the most part of the sofa. I was just feeling horrible, as either I had a very bad "flare with the Lupus" OR I had the flu!!!!

In fact all weekend, I've not felt well, and I can't think, I just do one thing, and lay it down, then later go back and see I never finished it... or I've tried to repair a lamp that Mom had now for TWO days, and I bought the entire kit, and it should work no problem, but for some reason, I cannot think enough to even do that.... now I fixed my lawn mower even changed the oil, and guess what fell over dammit and spilled oil all of over back patio tiles... I've tried everything and can't get it out, cat little Epsom salts, even Dawn dish soap, so today I put some bleach on a couple of the small spots to see if it did any good or just made it worse...Okay, enough of all of that, (the "writer in me") and my long drawn out posts.... I have dealt with of course everything else in the world - paperwork, trying to keep up things as far as my own stuff, and also Mom's stuff. It seems one of us always has paperwork, or doctors visits, or labs, or so on and so forth these past several months. In fact I am still extremely concerned about this "lump" on my right thigh. It never got larger but it did not go away either, and just like the one that finally abscessed it has this "grayish" tint over it - yt skin in itself, looks kind of like it is a grayish color.. and it could be anything, just as the surgeon said, it could be a harmless "lipoma" and he can take that out anytime I want. He just did not want to do two incisions on me at one time... due to all of those others issues with health I have, and I intend on discussing it with my PCP - Mom and I both have follow up appts with him in the morning.... along with several other things, for myself and for Mom... she told me yesterday and I don't know how long it has been going on, but she is short of breath again, even walking out to the mailbox and back.... so THAT in itself scares the HELL out of me... when that first happened it is because of a "leaky" valve and if the medication regime that the cardiologist has her own, quits working, that means open heart surgery - so then I got to understanding why, she is not really jumping up and down to go to the Casino... we have free rooms - like both of us for two days and then 2 buffets a piece.... so other than the small amount and I mean small that we gamble on... my car gets like 52 miles to the gallon, so you can go on not much gas at all there and back......

Anyway, back to the issue I am having... Last weekend for some "odd" reason, and I still have not figured out why, Sunday morning (I mean two weeks ago not this past Sunday).... I had the very ominous feeling, that came over me, even while I was getting dressed, and it was like I "felt" I was told "do NOT go" I thought it was silly, but the more I got dressed, the more this just strange feeling, overcame me, and I even cried about it, I was so alarmed as to "what or why" I felt that way??? It just shook me to the bone, as to what would have happened to give me such an awful feeling, especially going to church of all places... and I even tried to blow if off and go anyway, but I could not shake the feeling and I finally just changed my clothes and stayed home...I've had 'strange" feelings come over me through my life, that may alarm me into thinking may I should or should NOT do something, go somewhere, and so on, but nothing like this. I have enjoyed the new church and even became a new member 3 weeks ago on a Sunday.. So, for me to have such a weird thought such as that made me wonder if all of the stress is really causing me to "feel a certain" way, and yet there should be no reason.... Of course losing my Pug, Tazz, I am still very much not over losing her.... my grief is far from over, and what concerns me even more, is that Bub's is just not himself either. Usually he wants to eat breakfast with me, and will sit at my feet for me to give him a piece of mini-wheat or anything I eat he is usually up and wanting a bite... The distress, stress, or whatever you want to call it about this entire lawsuit ordeal has not helped what so ever, and now, there is really even more stress because if "they
don't try to offer to settle, that means court in Dallas for a week or MoRE - with a jury and the entire mess... of which I am certainly not in shape for mentally, physically, emotionally, or even money wise... that would mean be having to either travel back and forth every day for at least a week, and/or me stay up there close in a hotel... which I have to have someone to watch over Bub's... I am already concerned and worried enough about him, I really hesistate to leave him for any length of time since Tazzers passed away... he just shows signs of "grief to me, and frankly I am quite worried about him - he just has that look in his eyes, when I leave even for a short time, and when I come back he greets me even more than before, jumping, kissing, wanting to "talk" to me.... like he feared I would also go away and ever come back....

There is a GREAT GREAT DEAL of WORK and repair my house needs, from outside painting and some windows either need to be recaulked or a couple that really need to be replaced, which I can put the pins in and use the glaze on them, but still I have to have someone to help hold the glass up until I can get a few pins around it... I need about 5 or 6 of the boards from the bottom of my house going up, completely removed and I need some stuff that almost looks aluminum, but it stops any type of rotting due to being wood on the ground, and would not have to worry about cats or anything else digging to get under it... just about the time I think I have all of their holes covered, they find a new way in, and we have 2 cats that got either poisoned or sick, so they run under a home like ours and hide, but then they die under there,. and talk about something that "reeks" - anything like that gets under a house and either is sick or can't get out.... the smell is more horrid than I can imagine or explain... and we had it happen twice when we first moved in... so most of the places are repaired in one way to the other, but it looks horrible, and then I need to put new fence up where my neighbor took down a couple of old buildings and now there is nothing there so it leaves my backyard more open and I hate that... I have several trees, that are either in need of getting rid of because they are dead, or pruning enough so they will not grow into the fence like happens around here.... so I've been trying o hard to GET what I can get done - around the house... But, I am so SLOW now, or I tire out, or I have to run to do something else... I feel as if I am on a merry-go-round with NO PLACE to finally get off and stop the ride... I am not feeling "alone", but I do feel lonely with Tazz gone... I love Bubs to death, and he is my "rock" right now, but I know he misses having a playmate and I think that is also what is wrong with him.... he was used to them keeping one another company, even if they were just on the sofa, they were still there together..


So, I have been trying to decide if I want to get another puppy now, or if it is too soon, or if Bub's would be jealous or happy.... just lots to take into consideration... it has to be a very "small dog" for me now... because even Tazzy, and Bub's I can and could barely pick them up.... so I was thinking something on the line of a "Shi Tzu", or a "Shorkie", which I saw, guess a cross between a Shi-Tzu and a Yorkie... I really prefer I get it from the puppy stage and me train it myself... I've learned lots of lessons after these two, so I know what I will and will NOT do again...

But, they are also expensive and I do not care about "papers" or being "registered" - as long as it is the "type" of dog I am told it is from day one,.. and I really prefer not to get a puppy from what they call a "puppy mill"... I am not thrilled at all with those types of places, but I do want it to be already through with its first round of shots, worming vaccinations and have a clean bill of health when I get it.... SO and this includes my favorite "Vet" Venetia Shafer - send me some information on what breed I may like, something that will remain small, is from proper breeding but not a puppy mill, and any "ins and outs" of possibly one breed over the other... and why.... plus give me a very HONEST answer about whether you think I am doing this much too quickly, and just trying to get my broken heart to heal... I kind of feel as if I am "betraying" Tazz - by bringing a new pup in so quickly, and I also want your opinion about whether you think Bub's will be "jealous" or would he like a puppy because he loves to play... and Tazz was already getting up in age and did not play as much after he got about a years or 2 old...... In fact send me a Private Message or you can email me also and let me know your thoughts... PLUS what do YOU think is going on with me about this "odd" thing I have about going to church - because it happened again yesterday... of course I had not felt well for two days, but I even took a shower early enough Sunday morning and had plenty of time to finish dressing and go.... but once again it was as if "someone" or "something" was either "telling" me, or more just giving me this horrid feeling that "don't go"... I even tried to laugh it off at Mom's later yesterday, and told her maybe the "devil" is speaking to me, now since I joined the church...... I was "joking" around as I said it, but then wondered "why" this feeling is so apparent and very strong... also I am facing getting new Medicare Advantage Plan insurance for either just myself or again for her - and this time I HAVE TO BE SURE (as I thought I was last year0 that ALL OF OUR DOCTORS WE SEE, AND ALL OF OUR URGENT CARE, THE HOSPITAL AND SO ON ARE DEFINITELY COVERED... I went through that online, the on the phone, and then to the insurance website but you can believe they CAN and DO CHANGE their minds once that know it is too late and the new year has began. I cannot lose a couple of my specialists at all, period! And believe me they lie, they cheat they say one thing on the phone - and I've watched good people have to lose their entire life savings to the insurance companies, saying one thing and then doing something else...

So, I am not sure if it is ALL that is on my "plate" and "to-do" lists, plus I feel as if I have NO TIME to write, to really work on my blog, which I am working to change the entire site a far as how it looks and feels... I began working on a few things today..

I know this lawsuit, as I've said now 30 times over the past few weeks, I wished I would have never been involved at all. - it has NOT been worth the mental, emotional, and physical agony, that I have gone through.....

So, I've got several "lists" going., some to do back to doing what i had been doing, my blogging, my activist, the Platinum Ambassador, and my writing, and blog - it requires "a time frame daily", it requires a time when NO interruptions are there, and then is they list of the "have too's" in order to maintain and keep this house from falling down around my feet....


Anyway, I am also distraught that my Rheumy wants me to quit the MTX! Well, that is more for the Lupus, and I've been on it almost from the the time I found out about the AI's - and my PCP has always taken care of the "Lupus" portion of my illnesses, and my Rheumy is more about the RA - thus the biologic, the Sulfasalazine, and a few others... so my Prednisone, the MTX, the Plaquenil, and then finally a med for the Sjogren's - which I looked up and discovered the Pilocarpine.... So, my Biologic, the Sulfasalazine... was taken are of, and my Rheumy knew that my PCP was taking care of my Lupus, it is just easier for me to go to him, for a Lupus Flare, in which I can have several in a few months, or may go for a long time and I never have to go back on the
the huge 14 day dose of the Predisone, in which I hate, but the way I have felt for the past 3 day or so, I almost think I am having a very bad Lupus Flare now, probably due to the stress of it all, and then feeling so stupid when I went in to see the Rheumy & I "seem" okay that one day....

So, my question after all of that to all of you is "DO YOU THINK I MAY BE going through some type of "mental issue" causing this "overwhelming" feeling about where NOT to or TO GO??? I am NOT sleeping well at all.. I have several over this past SEVERAL THE NIGHT TERRORS HAVE BEEN REALLY BAD! IS A PORTION of this mess, to do with how terribly our cities are being treated, and no regard from the "innocent lives" they either take or ruin for sure... I get to where I cannot stand to see the news... it seems every day something else has happened even in our own "back yard" so to speak...... Mom seems to think it is because I don't "rest" enough... which is bull, sure I am up and doing thing outside, inside, wherever I can feel going to do because that is a portion I think of what does keep me "sane"..... Anyway, I close now with a hello to everyone... I guess many are already in preparation for Autumn, the weather and time change, and then the colder and shorter days with daylight, which just drives me nuts, because doing some things outside are hampered by the weather....


Monday, September 14, 2015

IFAA Post and an article about the "Cost of Chronic Pain"

http://www.motherearthliving.com/health-and-wellness/mind-and-body/cost-of-chronic-pain-ze0z1404zhou.aspx?PageId=1


Gosh WE should ALL know about this one!!! BBetween astronomical prices of medications, physicians, (even WITH insurance), supplements, try having a "surgery"... I know that my "body" has parts in it, and has been "Overhauled" and probably have a "net worth" of $500,000.00 OR MORE!!!

 My 6 week stay in 2010 in two hospitals was over 100,000.000!!!!

And for each "replacement" surgery, you can bet on 25000.00 to 75,000.00 by the time ALL get their part...

Just the costs of labs, CT's, MRI's, any type of radiology procedure... I have a bill here for the Discogram... it was almost $20,000.00!!!!!!

And because I did NOT realize it was NOT filed as an "outpatient procedure" that would have already been 250.00 out of pocket, I owe almost 700.00 because it filed as a "radiology" procedure, so my part is 20%!!!!!!

And I am supposed to pay that off in two months???? ON a "salary" that is BARELY over 1,000.00 A MONTH!!!!!!

Hell, my TEETH, cost almost 15,000.00 when it was said and done....



Thursday, September 10, 2015

Exciting News for IFAA - -FINALIST FOR INNOVATION AWARD! "Celgene" Innovation Awards


HOORAY FOR IFAA-FINALIST FOR INNOVATION AWARD!

The International Foundation for Autoimmune Arthritis is a FINALIST in the 2015 Celgene Innovation Impact Awards: “Unleashing the Patient Voice in Research”, with awards up to $100,000 for our submitted project idea!

IFAA is dedicated to bridging YOU with scientists so that OUR needs can be heard and then turned into real research projects. We are problem solvers, it’s what we do. Hopefully we are able to push this to the end and bring home one of the awards! Autoimmune Arthritis patients- it’s our time to be heard!

Congratulations to all the finalists:
1. Aplastic Anemia & MDS International Foundation
2. Cancer Support Community
3. Crohn’s & Colitis Foundation of America
4. FORCE – Facing Our Risk of Cancer Empowered
5. Foundation for Sarcoidosis Research
6. International Foundation for Autoimmune Arthritis
7. MDS Foundation
8. National Psoriasis Foundation
9. Research Advocacy Network
10. Pancreatic Cancer Action Network



Wednesday, September 9, 2015

IFAA, Tiffany and the Entire Dedicated Group with the International Autoimmune Arthritis Foundation - Thank you!

I had a very pleasant surprise at my door step Tuesday after the holiday weekend! My “regular” mail had already came. But, later in the afternoon, I stepped out on my front porch to see a large package with my name on it!! At first, I thought it was the “blue ribbons” that I am waiting on for pain awareness month. They have not sent them yet… BUT, IT was ALL KINDS OF AWESOME STUFF FROM THE IFAA AND TIFFANY! I was so thrilled when I opened it… an awesome very sturdy reusable bag, along with others that are also perfect to take to the market from the WAAD 14! I also had a nice pen with the IFFF Logo on it, and a huge book that came from the Autoimmune Summit 2015 - with all of the data from research and so forth they discussed at the Summit in New York! smile emoticon I am really enjoying lots of the data in there… extremely interesting to me… anyway, I will get a better photo up later. I had to take this one with my “web cam”. I am charging the battery on my good digital camera. So, I will make more when it is charged. Again, Thanks to IFAA, Tiffany and the entire gang… what an awesome job all of you do…. I hope to soon participate more. Due to all of the “circumstances” between my own health, My Mom’s health, then all of the other personal “agenda” that I HOPE to have basically over with in October… my hope is to get back on tract with my activism, advocacy, my own research, and doing more writing on my book, as well as working even more on my blog… by the way my blog seems to be “getting more attention”… and I am thrilled about that…


 To Learn more about IFAA, want to join in their Advocacy team and more  the URL IS:

http://www.ifautoimmunearthritis.org/

Monday, August 31, 2015

IFAA - Register to Walk! Physically or Virtuallly!! You Can Join in!


Who out there lives in or near (or will be in) NYC on September 20th, 2015?

There is a great event that day hosted by American Autoimmune Related Diseases Association (AARDA) to raise awareness about autoimmune disease. International Foundation for Autoimmune Arthritis, official hosts and event coordinators of World Autoimmune Arthritis Day, is attending to support the event and to raise awareness about a much needed AARDA program "ARNet" (Autoimmune Registry Network).

If you will be in NYC on September 20th please sign up to join the IFAA Buttahflies and meet IFAA Executive Assistant, Kerry Wong and other IFAA Representatives. Sign up by yourself or with family and friends but sign up if you care about autoimmune arthritis awareness and have a fun day with IFAA and AARDA!

http://www.ifautoimmunearthritis.org/upcoming-events.html

Saturday, July 11, 2015

Thursday, July 2, 2015

FROM THE IFAA - Results from an in-depth study to IMPROVE EARLY & ACCURATE DIAGNOSIS of Autoimmune Arthritis diseases, as well as other AI disease that often are in Tandem!




Here is the link to this extremely important study of the importance of EARLY and ACCURATE Diagnosis when it comes to Autoimmune Arthritic Diseases, and other Autoimmune illnesses that often are in "tandem" with them. This report had hope of educating more of our Medical Professionals, Dentists, and Others, about these illnesses and diseases. It is SO Crucial to have an EARLY and ACCURATE diagnosis, so more Aggressive and targeted medications and treatments are done early, before so much damage has been done.

We have also seen and witnessed over the past couple of years SEVERAL often "very young people" are either extremely ill or even pass away due to the possibility that they were not diagnosed early enough, and had the proper treatments. That is just another reason why the report and others to follow are critical for all of us that suffer from these hideous diseases, syndromes, and illnesses.

Please see the report in its entirety at the URL below:

Early Symptoms of Autoimmune Arthritis Investigation

Tuesday, June 23, 2015

Early Symptoms of Autoimmune Arthritis Investigation - brought to you by the International Autoimmune Arthritis Foundation!







It took 18 months and over 3500 hours. It required online educational courses in research methods and data analysis in addition to private mentoring from a lead research consultant. It needed cooperation from our friends at the Spondylitis Association of America, Lupus UK, Sjögren's Syndrome Foundation, and International Still's Disease Foundation to serve as Nonprofit Organizational Experts on symptom reporting. It required patients with RA, PsA, SLE, Sjogren's, Ankylosing Spondylitis, and Adult Onset Still's Disease to see if they qualified to participate and, if so, donate 60 minutes of their time to report their disease progression from onset through 24 months.
It required patience, willingness to learn and grow, and the passion to make change in the delays in detection, referrals, diagnosis, and treatment. But we did it.


The 150 page Early Symptoms of Autoimmune Arthritis investigation into the true early symptoms of 6 diseases*, as reported by the patient and compared to current symptom lists published by the ACR, NIH, National Library of Medicine, and Mayo Clinic, will be available for you to download on July 1st from the IFAA website. The results from this investigation will be used to create new, updated Early Symptom Patient Models per disease and by group.


A special thank you to Janssen for making this possible.
*AOSD FULL analysis will not be included in this publication (although much of it will) as the original recruitment was too low for 95% scientific accuracy. The number has now been reached and AOSD will be added to the analysis by the end of 2015.



 Early Symptoms of Autoimmune Arthritis Investigation

Below is my post to the IFAA!

I know that this took an astronomical amount of work from the IFAA and all, plus many more including Janssen that helped to make this all possible. In the hopes that this will be quite an eye-opener for everyone that is involved with Autoimmune Arthritic Illnesses, along with all of the other AAI's that can go along with the "Arthritic" ones. I am proud to say that I've been a part of this incredible bunch of ladies and men. It took many, many long days and nights, to get all of this in order and put into the publication that it is coming in. My hopes are that this will bring even more awareness, more education, more "early diagnosis", more Advanced and Early, plus "aggressive" medications, and treatments; because up until now, the many, many of us that have been through the "fires" of one doctor after the other, one diagnosis after the other, one medication after the other... which may go on FOR YEARS... only to find out something else is causing the problems, or you may have NOT been as "ill" had you gotten proper care from the beginning... as a woman, I know the spill, about, oh, it is your hormones, or you are too "young" to have joint problems, or you are just stressed out... and this from Physicians.... that are supposed to be "specialists"... THEY need EDUCATION also in many ways... so I say again CONGRATULATIONS IFAA!!!! What an incredible feat you pulled off

Rhia Steele


Friday, May 22, 2015

WOW!!!! Talk about OVERWHELMING!!!!!

I wanted to reach out to all of you that come and read on my blog. I realize that I was not getting it "out there" like I needed to.


Then between becoming a voice, advocate, an Ambassador, A Platinum Ambassador, Activist, and volunteer, I began to be able to have a better audience.

I have several to thank for this but I will say THANKS ALL OF YOU!!!

Right now I have had MORE page views than any other time of this blog... and I have had 335 so far today!!!!!! 

That is just totally mind boggling!!!


I am in support of a great deal of Organizations who are moving forward to make life different in good ways for so many chronically ill, chronic pain patients, autoimmune illnesses, arthritic illnesses... and I know being a "part" of those has helped me "round my field" of my "audience"....

I feel I should shout out to a few, but I hope I don't leave anyone out...

My heart felt thanks and more to...

The Arthritis Foundation

WEGO Health

Cure Click (a part of WEGO)

WEGO "Health Hero's"

International Autoimmune Arthritis Foundation

The Pain Foundation

The Sjogren's Foundation

The Lupus Foundation

Lupus Research Institute

Rheumatology

Power of Pain Foundation

Alliance for Lupus Research

and the list goes on and on... I probably need to update the list on my blog right now.... to ALL of you... thank you for your believing in me, for listening when things really suck, for "celebrating the good things", for showing me new ways, and a new day when it comes to living with some of the horrid diseases and illnesses.... Without all of you, all of THIS would not be possible!!!




Wednesday, May 13, 2015

WAAD 15 - Begins Friday! The "race around the globe for Autoimmune Arthritic Awareness!


In addition to the online race, with 2 dozen nonprofits competing to win WAAD15 while spreading education and awareness around the world, we have MORE for you during the 6 day online World Autoimmune Arthritis Day experience!
There are FIVE webinars you can register for as well. IF you are also registering to officially play WAAD15 then these webinars can earn you major mileage points for yourself!*
The second webinar of the event is Saturday night (USA) at 7:00 ET (9am AUS/11am New Zealand, Sunday), which deals with the frustrations of awareness, delay in diagnosis, and access to treatments- all associated with living with an autoimmune arthritis disease. The official Hosts and Event Coordinators of WAAD15, International Foundation for Autoimmune Arthritis will be leading this session. There will also be a special feature discussion on PsA with guest Marel Pike, from Secret Psoriatic Arthritis Business, and materials referenced from the National Psoriasis Foundation and IFPA (International Federation of Psoriasis Associations).
This will be a casual, "chat" type webinar with a Q and A session at the end.
You can register for this FREE webinar here: https://attendee.gotowebinar.com/regist…/6827783956463713793
You can learn more about WAAD15 at www.worldautoimmunearthritisday.org!
*While it's not required to register FOR FREE to play along with WAAD15 you still should to get the full experience. First, your registrations earns your 3 favorite nonprofits 25 mileage points each towards winning WAAD15 and enables YOU to log mileage points as an official WAAD15 player...so YOU can win prizes too! You can learn all about WAAD15 and register to play along at www.worldautoimmunearthritisday.org



Just wanted to remind everyone to go to the WAAD15 Website and Register for FREE! This year the event will run for about 5 to 6 days, and will have some of the best information from many sources when it comes to Autoimmune Arthritis - More information is listed below and the URL you can go to for registering
and more...

Monday, May 11, 2015

"WAAD 15" World Autoimmune Arthritis Day beginning Friday! Pick your team and Join in on the Fun!

World Autoimmune Arthritis Day's 6 day virtual, online car race to collect resources anraise MAJOR awareness for autoimmune arthritis diseases is just 3 1/2 weeks away- please share this poster, print it and give to your rheumy, use it to personally invite friends, supporters, those in your community groups. The event will happen HERE on Facebook and Twitter, along with some internet navigation and sharing of awareness submissions on your own pages, so plan to tune in!
More about how it works:
1. The Race Cars will represent each nonprofit from around the world that has officially signed up to participate. They will be the Nonprofit Race Teams and will compete against each other to "win WAAD15". Winning is based on who gets the most mileage points, but they need YOU to earn those for them.
2. On May 1st registration will open at www.worldautoimmunearthritisday.org. It's FREE to register, and while you of course can play along without registering, if you do register you can help your favorite nonprofits earn mileage points AND you can earn your own mileage points too. The top 5 registered participants will qualify to win prizes of their own! Register solo or get a group together and play as a team (more details will be posted on this soon). During registration, you can pick up to THREE of your favorite participating nonprofits to support and 'race for'; each of those nonprofits will earn 25 mileage points for your support.
3. On May 15th, at 12pm ET/USA, the race will begin RIGHT HERE on this page and our Twitter page @WAutoimmuneAD. All participating nonprofits with Facebook and Twitter will also post that the race has begun and provide instructions for those just tuning in.
4. Also on May 15th, time TBD, there will be a special post for memoriam laps, where we as a community remember those we have lost to these diseases. We will ask all people to share and add names of those you are remembering to the post.
5. Those registered to race in honor of nonprofits will receive, via email the day prior to the event, the official Global Race Map, which gives times of posts, where to go learn more about specific subjects, details about all the Detours (live webinar chats) and how to register to attend those, and detailed information about the live awareness activities-including when they will post and what they will be. All others can receive this information at the WAAD website after the event has begun.
6. Nonprofit Race Teams will also earn mileage points when you "like" or "share" the posts or tweets from their account or when you do awareness action items in their honor. Registered participants will also earn mileage points for posting/turning in awareness call to action items.
7. In addition to the live social media action, including sharing up to 6 resources from EACH of the over 30 nonprofits participating and several live Detours (webinars-subjects and hosts announced soon), there will also be a page where you can submit information about good practitioners (any specialty) in your area so that we can create a map that will be available year around on our website.
8. The race will end on May 21st at 12pm ET/USA when the checkered flag waves. The top 5 Nonprofit Race Teams and the top 5 Registered Participants (individual players) and top 3 Registered Participant Teams (signed up to play together) will be announced. Trophies/plaques will be sent to the winners, along with select prizes.
Nothing like this has ever been done but we can use this to push autoimmune arthritis into the forefront for 6 days. Are you with us???


 

Sunday, May 3, 2015

"World Autoimmune Arthritis Week" Race Around the Globe! Are your Ready! by the International Foundation for Autoimmune Arthritis

WOW! May 2015 is going to be a very busy month for all advocates!

We have several "awareness" things going on for May and one of them is the "Race Around the Globe" for a week of spreading awareness about Autoimmune Arthritis!


The International Foundation for Autoimmune Arthritis (IFAA) is putting this week on. It begins on Ma15th, and around the Globe many entities will be participating in it.

Here is a link to the official "PR" release:

http://www.prweb.com/releases/2015/WAAD/prweb12684750.htm




For More Information about This Amazing Race Around the Globe - Host by IFAA, where you can also sign up to participate see:

http://www.worldautoimmunearthritisday.org/home.html

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 6, 2015

FDA APPROVES 1ST "Biosimilar"! Great News!

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

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

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

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

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


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

Wednesday, October 29, 2014

Information from the IFAA's Study On Autoimmune Arthritic Illnesses and What Some of the Results Are

As new data comes out of the study that IFAA helped to get initiated and to get relevant information out to everyone that really is vital to our lives and how these illnesses have and will effect us, I wanted to post this from the IFAA


Through 2014, IFAA led an Early Symptoms of Autoimmune Arthritis study to determine all symptoms that could occur amongst six diseases within the first 24 months after initial onset. From these symptoms we are narrowing it down to 0 < 12 months per disease and 0 < 6 months per disease. While we are currently analyzing everything from joint and chest pain to eyes and canker sores, we are finding out some very interesting things that will help us create new Early Symptom Disease Models for the diseases individually and the group (so that undifferentiated patients have a better chance of diagnosis with treatment in the future).

So how many of YOU had 'brain fog' in the first 24 months? Here's how many had it in the first SIX MONTHS. It's not so abnormal, is it?


Saturday, October 4, 2014

Rheumatoid Arthritis Study - Volunteers Needed - See if you Qualify from this post and the IFAA will get the donation!

Do YOU qualify for this study? If you do, and are willing to give a little time for a phone interview, you can raise $100 for IFAA!

All money raised from this study will be used towards wellness education and patient-centered/patient-led research in 2015.

Do you qualify? Will you help? PLEASE SHARE via social media to find qualified participants.

Additional qualifying criteria is:

You must have been on the Cimzia, Humira or Remicade for less than one year before discontinuing.

You must have moderate or severe RA (as opposed to mild)

You cannot be a nurse, doctor, or research professional.

This will be one confidential and anonymous phone call with one moderator that will be scheduled at your convenience.

Is this you? If so, PLEASE EMAIL DOUG ASAP at dlowell@sampleczar.com!

Thursday, September 18, 2014

30 day Healthy Eating and Nutrition Challenge! by the IFAA

NUTRITION SUPPORT GROUP FOR AUTOIMMUNE ARTHRITIS (AND RELATED) DISEASES NOW FORMING. SIGN UP TODAY!
Are you a patient who would like to boost your health by eating more nutrient rich foods but you need help reaching your goals or jumpstarting your efforts?
Are you interested in communicating daily with other patients, just like you, who have the same diseases and face the same struggles with diet? and working towards common goals together, as a group?
Would you like to have a Personal Training and Wellness Coach (who happens to also have Rheumatoid Arthritis) there to help you daily with recipe recommendations, label reading assistance, and support to keep you on track?
For just the month of October, IFAA is launching a pilot program in the hopes that there is enough interest from our community to make this a full-fledged program in 2015. Why is this an exciting opportunity for YOU right now? The group who participates in October will not only be helping themselves, they will be helping potentially 1,000's of patients around the world because these participants will be contributing commentary to what should be in the permanent program!
What's more? Not only will these participants be working daily with our wellness experts AND other patients, this just in....IFAA's CEO (and patient) will also be in the group and working one on one with each patient, DAILY for 30 days, to tackle the patient-specific challenges we all face, such as what to do when you are flaring and cannot cut your meals? Are there fatigue-fighting ideas to help you through the day (and night)?
But wait...there's MORE! We are also contacting "special guests" (aka Autoimmune Arthritis patients who understand diet and cooking challenges), who we will be asking to make special appearances in the group!
We need a minimum of 10 patients to participate in the pilot program. Will YOU be the one who makes the most changes to YOUR life AND the lives of thousands?
LEARN MORE AND REGISTER TODAY:
http://ifautoimmunearthritis.org/30_Day_Challenge.html
There is a $40USD fee associated with this program (program without the one on one patient assistance from IFAA, only from the trainer is usually $60USD, so this is a discounted price. Also, $10 will be donated to IFAA from each registered participant.)
NOTE: This is a nutrition support patient group created to help those who want to improve their nutrition and diet, in conjunction with their current treatment plan; this is NOT to be used as a substitute for treatment.