IFAA is Pleased to Announce A 2nd "Blog Leader" Danielle Tipton in an Online "Chat"!!

 International Foundation of Autoimmune Arthritis Diseases represents YOU, I, and EVERYONE that are plagued with these horrid, still a great deal misunderstood. 

I am so pleased to "introduce one of our next "Blog Leaders", Danielle Tipton! Being the Mother of two children that suffer from Juvenile Arthritis! As she blogs about Zachary and Emily, you shall get a small glimpse of how difficult it must be to have ONE child with this disease!!! I just cannot fathom how she does it all with two chronic ill kids. Her fight is an extremely personal one, I would say. So, please join as she tells her "caretaker" and Mom's story, on January 14th, 2014 at 8:30 pm (ET).

Go Red For Women!!! Don't take "chest pain" lightly.....

                      Go Red For Women!!!

Go Red For Women

Please support this critically important disease. As a woman "survivor" of not just one heart attack at 40 years old, but a 2ns one at 50 years old, I have first hand knowledge about just how differently MI's and their symptoms maybe for women. 

 I had NO crushing chest pain, or pain running down my left arm. I was actually a healthy eater, an avid exerciser, walked daily 5 miles plus, did not consume much alcohol, and I was at a "normal" almost a bit too underweight at the time.

My symptoms were very little. My ankles and feet began to start swelling on me, especially if I sat down at my computer for a bit. I thought not much about it, but I did notice that they continued to do that throughout the weeks before. Other than that, I had been having some "chest discomfort" for about 3 days off and on. I mean something like well, indigestion, and not really even that bad. Yet, no jaw pain, no arms pain, no other "real" symptoms that would have clued me in for what would happen on January 8th, 2001.

As I said, I had been having this "pain" off and on, and thought maybe I had a case of bronchitis. So, I rang my physician to tell him a bit, including the strange thing about swollen ankles and so forth. I had been on the phone with his receptionist explaining what had been happening, and she had me hold just a moment. I thought oh boy, they want me to come in. Nevertheless, she came back quickly, and said your doctor wants to you to get to the nearest ER now, and if you are having breathing issues, etc. call 911! Lord, I still thought this sure is a lot of trouble for a bit of pain in my chest. In fact I had almost decided NOT TO GO at ALL! If it were not for a dear friend of mine who lives in Malta.... "screaming" at me online telling me IF I did NOT go, she was going to find an ambulance to pick me up.

So, I agree. I throw some clothes on. I was totally alone (another story for another time)... and no one to drive me 20 PLUS miles to the nearest hospital. And I was out in the country enough, by the time someone came to get me, I could just drive myself. So, I grabbed my purse, keys, and cell phone, got in the car, & started to the ER, which was about 20 miles away. At one time I thought to myself "MMM.. maybe I should turn on the flashers" on. Needless to say, I began to be a bit frightened when the thought crossed my mind "What if I pass out?" Just when you need one, not one police officer in sight! So, I went through the "back way" of the town the hospital was in, and missed red lights and traffic as best I could.

I pulled up, parked, got and out and walked myself in, and calmly told the receptionist my doctor asked me to come straight to the ER, he thought I might be having a heart attack. Well, all heck broke loose! I guess my doctor may have called ahead, because they were escorting me back very quickly, right to a room, and right with IV's, EKG, Oxygen and the entire ordeal before I was even able to say much of anything. I realized when one of the doctors that I happened to know (I was a Patient REP at that hospital before this happened), when he came in after about 10 minutes or so to speak with me, he basically told me that if I had NOT gotten up, and drove myself there, the situation would not be nearly as great (even though it was not great at that moment) if I had waited even another 45 minutes. I was having a "massive" MI, from what all of the labs were telling them. There was already "clot busting" meds going into the IV, they actually even gave me an aspirin, and all kinds of things were beeping and going on around me. He told me that when I was "stable" enough, hopefully the next day, they would move me from the ICU unit their to Dallas at Baylor. Well, of course I was totally terrified!!! At the time I had NO ONE there!

My parents lived in the next town up towards Dallas, but by the time someone called them,  and they drove about 25 - 30 miles there, it took a bit. They gave me meds, pain meds, and IV's , etc... all night long, with the telemetry on watching me. So, the next morning, I took that HORRIBLE ambulance ride to Dallas! NEVER if you can AVOID it HAVE TO RIDE in an AMBULANCE!

From there I spent about 7 days, lots of labs, cardiac tests, they did an angiogram, and the old fateful "treadmill" test... of course they could not put me on the walker, and just gave me medication to up my heart rate instead.

I was totally fortunate through out it all. When ALL of the tests, work ups, labs, plus the other 100 things they did were finished, it was then known the YES the heart attack was SEVeR, BUT due to ME getting at the ER when I did, the clot busting meds, STOPPED most of the damage to the heart muscle. :):):) I did not have to have a stent at the time, had some issues with the artery above my heart going into spasms, gave me meds, sent me home, and told me to walk, eat right and call the doctor if anything else came up. :):) Talk about a miracle! This is THE time, I honestly DID see myself.... as I was laying in the ER on the gurney, when my first doctor came in, I was "watching" myself from above...  It was the oddest, surreal, but most amazing feeling I ever had.

IT maybe not that was for some, and some say they see the white lights and so forth... I just knew either my own mind kind of "detached" for a few moments, and then I could kind of look down objectively upon the situation.

So, I could go on BUT I stop there... (by the way my 2nd MI took place in 2010, only about a week or two from the date of the 1st first, just 10 years later. I had already been extremely ill, and in the 2 hospitals, and I was so totally weak, I think my heart, was so almost "broken" I feared going home. I still even after 6 weeks, was terrified of leaving the hospital. Thus the day before they were thinking of sending me home, I truly was so totally out of it, the terrible fear and stress I was in, they feel caused the 2nd one!!!



So, "Go For Red" It Could Just Save Your Life!!!

Great News on the Autoimmune Illness Front - "Molecular "Gene" Dance in Autoimmune System

I had just got through emailing one of my friends who also suffers from the horrid effect of your teeth from Sjogren's.  Then I find this article! Of course this is not "just Sjogren's" but can mean another advancement in the world of "changing the face" of ALL Autoimmune Arthritic Illnesses and more.

Great Article!!!



http://www.medicalnewstoday.com/releases/270928.php

Come to IFAA & Meet Our Bloggers for a Live Chat!

IFAA is excited to announce that their blog site "Systemically Connected", will be hosting live chats for everyone to attend! There will be different ones at different times and dates, so keep watching for updates.

The first LIVE CHAT FB Blogger is Kristin! Please the her "poster" below tells the time, the date, and a bit about her and what she will be talking about when it comes to her blog, her role & her life.

Here is the link for the FB page for IFAA!

I will follow up a reminder next week so you won't forget! We are so looking forward to having each of you there!

Another Huge JUMP ahead for IFAA thanks to Janssen Global!

And we're off!

The International Foundation for Autoimmune Arthritis received a large grant from Janssen Global, Inc. to begin a study that, when finished, will combat the delay in diagnosis that is often associated with these diseases. Current AVERAGE time for diagnosis is 1-3 PLUS years, but the "plus years" is often 5, 7, even 10 or more. Given 50% of all patients can experience complete disability 10 years after ONSET if not treated properly, this means if a delay in diagnosis is 3 years the patient is almost 1/3 of the way to disability before ever starting treatment...and any damage accrued in that time is PERMANENT and IRREVERSIBLE, regardless if clinical remission can be achieved.

We will begin developing a survey that will analyze the early symptoms- as recorded by patients- then take the findings and cross-reference what is currently used as a model for detection, referral, and diagnosis. With these results we will then be able develop wellness education for primary care physicians and other "first responders", as well as rheumatologists, that can broaden the understanding of early symptoms, thus promoting an accelerated process towards diagnosis. In addition, we will be able to review the crossover in symptoms that occur in all Autoimmune Arthritis diseases, regardless of the outcome of final diagnosis, which should narrow the mystery of what it could be and push towards more firm treatment plans associated with the 'undifferentiated' genre.

We'll be coming for YOU to participate in this two part study, first analyzing patients in the US and the second phase will expand to a global level. YOU can be part of the change, matter-in-fact, we insist...because we are all about making the patient first in research!

Survey will be ready for distribution in March 2013. Results will be revealed LIVE during World Autoimmune Arthritis Day in May.

Thank you also to the Spondylitis Association of America & the @International Stills Disease Foundation for already signing on to help us recruit patients and distribute the survey. "Together we will move mountains, bulldozers are so overrated." -Tiffany Westrich, CEO of IFAA

WEGO Health Activist Awards - International Foundation for Autoimmune Arthritis - A Winning Team!!!!

Truly We are a Winning Team! I am incredibly overwhelmed that I can be a part of this "voice" for Patients with Autoimmune Arthritis!!!!

Below are the words from Tiffany Westrich Robertson, Founder and CEO of IFAA!!! 

With the 2013 WEGO Health Advocacy Awards right around the corner, we are SO PROUD to announce that collectively IFAA and some of our own Active Volunteers-who also perform their own advocacy efforts in the community-have SEVENTEEN NOMINATIONS in a variety of categories!

Some of our AMAZING Volunteers who are recognized for their work outside of IFAA are:

Wendy Koski, with her Friends and Family of Autoimmune Diseases Facebook Group is up for Best in Show Community/Forum, Facebook Page, AND Google +

Lorna Krump, blogger who writes Life with RA is a Pain, has been nominated for Best in Show-Blog, Best Kept Secret, Rookie of the Year, AND Healthcare Hero. Lorna also helps run our IFAA Blog Leader program.

Rhia Steele, recognized for her blog, An Autoimmune Arthritic Systemic Life

Therese Freeman Humphrey for her dedication to advocacy through Twitter and Anthony, "our first boy", for his work advocating via Facebook.

Co-Founder, Amanda John, nominated for Best in Show: Blog for All Flared Up!

And for their work WITH IFAA:

Co-Founder, Kelly Conway, & Co-Founder/CEO, Tiffany Westrich, both also up for Health Hero

and Co-Founder Tami Brown has the nod for Health Hero, Advocating for Another, & Best Kept Secret

We even have a current volunteer-in-training, Rheumagram Melissa for her work with a nomination for Best in Show: Community/Forum

AND

IFAA as an organization is up for Best in Show: Community, an award nomination earned collectively for ALL 40+ active volunteers (those who donate on average 30 minutes a week) and additional dozen+ general volunteers (who have donated their time at some point through the year). We are a TEAM, a FAMILY, and yes, we believe BEST IN SHOW: COMMUNITY, whether we win or not 

Volunteers who are nominated outside of IFAA, we are so very proud of you!!! Way to go!

Thank you Tiffany!!! We would not be here if it were not for a young woman, a "diagnosis" FINALLY after a time of not knowing what was wrong, and the "idea" that came from a few pieces of leather, a belt buckle, a few colored beads, and some silver wire! She knew she had to find a way to get an earlier diagnosis, for earlier treatments, and to STOP so much damage BEFORE it was too late. The "Buckle Me Up" program came alive! And here just a couple of years later, this her ALL of her accomplishments unfolding!!! 

WEGO Health Activists -- You can STILL ENDORSE Nominee's Until January 31st!

I did not realize you can still go into WEGO Health and "ENDORSE" those that have been chose as "NOMINEES!!!! I was not aware of it until early this morning, so I did want to let everyone know you still have a "voice" in the 14 categories of awards to give your favorite Health Advocates a "Thumbs Up"!!!!!

My link is:
    https://awards.wegohealth.com/nominees/rhia-s-autoimmune-arthritic-systemic-life-1998

http://www.wegohealth.com

Now, of course I would LOVE YOUR "Endorsement" for "Best in Show - Blog", but I wanted all the Nominee's to have a chance to be endorsed!

Time to "Empower The PATIENT"! IFAA Shall Move Mountains of Obstacles to "Clear" Paths for the Patient!!!

This is THE YEAR to EMPOWER the PATIENT

International Foundation of Autoimmune Arthritis- "Moving Mountains of Obstacles in 2014 so PATIENTS have a CLEAR Path to EMPOWERMENT!!!!

Hope to be "Hopping" for All Things Autoimmune Arthritic for 2014!!!

Time!!!  Time!!!! TIME!!! To Make Things happen in the World of Autoimmune Arthritic Illnesses and for all of the things I so believe in!

Wow! Yes, I say, "WOW"!!! First of all it is just almost impossible that 2013 has "flown the coop" and brought in a brand new year! I am always saying that it just seems like life is flying by too quickly! I blame it on everything from "getting older", to "being slower", to "wearing out earlier than I used to before I finish something", to I honestly think that "time has began to slow down"!

In all honesty, I feel it is ALL of those above and then some. Age as I have found out does several things to you. Most of us it does much more than we even want to admit to. Yet, I am talking more about what it does to our "time". Let's face it, I am not sure about you, but, I do KNOW I am "slower" at getting some things done. It takes me twice as long to get dressed and ready to go somewhere. Usually it is more when I am "dressing" to go some place special. Such as to the Casino, out to dinner, a movie, or anything "special". From the time it takes me for a shower, then to dry my hair, make up my mind "what to wear", and probably change my mind at least 3 times, to makeup, shoes, and the jewelry. Now I must say, that "men" in general have it quite a bit less to do, in order to go somewhere, even if it is a special occasion. Their concerns usually are not "what shirt", or what pants to wear. Men never have to wonder, well does this chain go with this belt, and you know the story.  One thing for being male, is that in the normal sense of things, you guys have it much simpler as far as clothing and going out somewhere.

Then it is cleaning my home, doing laundry, and everything that entails. It has not been that long ago, I could on a Saturday morning, clean my ENTIRE house, and I mean top to bottom, dress, go the the market, and pick up everything else I needed to do or errands to run. I was home before I knew it, had that all put away, out to the yard where I could mow, and have all of my lawn looking great by mid-afternoon. When I was taking college classes at night and working, I could then sit down, do my "homework" which was usually 2 to 3 hours at least to complete, and by then either be cooking dinner or usually headed for the shower, to get ready to go out dancing, to dinner, friends, or whatever our plans were for the Saturday night. Now this was all done in the SAME SATURDAY! Stay out until midnight, sometimes catch a "early breakfast", go home, maybe sleep or rest a few hours, and it was off again, with either errands, to church, out to exercise, or whatever that Sunday afternoon brought. Then it was late Sunday, time to get everyone ready for the week that followed, and off we were on Monday mornings, kids to school, me to work usually at least a 20 mile one way drive, classes at night at least 3 nights a week, and that was in between everything else that was happening with the kids.

Honestly, I am already exhausted just typing that paragraph, much less thinking about "how the heck" did I GET IT ALL DONE??? I did, so thus "age" does have to be a factor. What I have also noticed, it is not just "me" that is slower, it seems we have "more to do" than before. I don't recall having to spend as much time at the market, as I do now. Between coupons, looking for the best deals, and just all of the lists of things to do, it took time. But, I also washed my car every Saturday, went shopping sometimes, other than house hold items, and still it seems "time" was more prevalent then.

Now I think "we" as a "society" have put WAY too much emphasis on "stuff" that takes up our time, rather than allowing "us" to use our time more wisely. You would also think with this day and age of computers, knowledge at our fingertips, being able to pay bills from home, buy from home, you practically NEVER have to LEAVE HOME if you have a way to get your market to deliver! Yet, in the scheme of things, I see that COMPUTERS can often be the "demise" of time. What happens when you are "checking out" and the "computer" goes down??? Well, there is no longer a way for most places of business to check you out "manually". Some of the checkers would not even be able to figure the sales tax, or heck give the correct change! Lord forbid, them have to "key" anything into a calculator and add it up! I know you have seen the same thing all too much. Certain things in this age of fast moving technology has made certain things extremely fast. But, "faster" isn't always "better".

Then we are stressed out it seems all the times. I feel (and I know I am chronically ill) that so many of us spend more time in the doctor's offices than we ever done. I used to never be in the doctor's office every month! Even my kids, they were not ill all the time. If they had a runny nose, or an ear ache, they took over the counter medications, rested a day, and went on their way. Now, each time we take a breath, they have a new medication for us to try.

We are bombarded with OVERLOAD, when it comes to our senses!!! We are shown so many THINGS, that we MUST have, or life would just not be worth it without them. I've "pared" down some of the "stuff" over the years that is just that.... stuff! Stuff that takes more time to dust, to find a place for, to throw away once it has sat for years and collected dust. I did not NEED an ENTIRE walk in CLOSET FULL OF SHOES! I love shoes; always have! When I worked, I had some nice shoes, and clothes of course. BUT, I did NOT need to buy a new dress, blouse, skirt, and shoes every time there was a "sale". That is another thing what is up with this SALE stuff???

By the time Summer was winding down a bit, and it was "school" clothes time and supplies, there are the Halloween decorations! This is in August! Well, as they push those out the door, here comes Thanksgiving, which is basically skipped over and Christmas decor comes out the first part of November, if not earlier. And just this week, as I watched in total amazement, our stores here locally, were putting VALENTINE candy out BY THE after CHRISTMAS sale, the DAY AFTER Christmas!  Now unless I am mistaken they "missed" New Years there; plus Valentine's is in "mid-February"!!! I know because my birthday is the 15th of February! Well you can bet, Easter, Memorial Day, and St. Patty's will be all rolled up and tossed out before "spring" has sprung!!!

So, yes, my chronic "illnesses" and my age, have made me slower. I admit it all the time. I no longer can keep up the schedule I used to. And frankly, I don't want to. Yet, Lord where is there any "spare" down time now? My kids are grown and gone, it is just myself, Jim and the two dogs, I am home, he works from home, our house is tiny, we can't possibly eat that much, and for the life of me, I can't figure out where time goes.

I am up at 3am, and by 10am, I feel like nothing has been accomplished! My brain fog does not help, I do have to help Mom quite a bit, and we do live in a much "faster" paced world than just 15 years ago.

We are SPOILED to IMMEDIATE GRATIFICATION!!! Fast food, drive thru pharmacies, and doctors in some places, faster cars, television without commercials, you name it, we want it, THEN!!! Buy a physical book!??? Heck, read it then on your Kindle, I-Pad, phone... I could take a week and talk about all of those things... but you already get the picture, which also I would make right here, "looking at you" from my computer!


So, this year, it WILL BE a BUSY 2014! I have made "more" obligations, but those that I have made, will be ones that COUNT for something.

I am now officially an "Active Volunteer" for the IFAA. I plan to help out as much as the Founder and Co-Founders will allow me. I plan on blogging for Activism and for Advocacy! Not only on my personal blog here, BUT on the International Foundations of Autoimmune Arthritis Blog, "Systemically Connected", which I am already a "Blog Leader" on! I also plan on doing some things in the Health Activism realms for WEGO Health. I am "nominated" for a "Blog" award, which I am still so tickled about, along with being asked to be on the "Judges Panel" for the WEGO Awards, which will be in ceremony this March! Of course, then there is also my "book"! My 3rd book! I have not "forgotten" what so ever. In fact I am more than EVER KEYED up and looking forward to having that "puppy" ready to be published by the end of 2014! Now, if you are wondering how the "hell" "she plans", on doing all of this, ah, great question!

My plans are to use my "time" more wisely. The "time" when I am feeling like doing all of these things above, plus play some keyboard, maybe even "bang" around on my drums, after I get over this stupid hernia surgery in a week!

I HOPE that all of my "Autoimmune Arthritic Illnesses" stay at bay... in other words I hope that the "Wolf" stays the heck away from my door this year, along with the others like RA, Sjogren's and what all that focuses on.

I am a "schedule" and list maker. I make lists , for the lists, when I do lists! Yet, rather than trying to "force" myself into more, I plan on trying to encourage myself to handle things much more efficiently. Now, don't get me wrong, I am frugal when it comes to how I spend my time. But, I want what time I spend to be in the right places, for the right things.

My health first (or try to of course), my husband, Mom, and family, my home, errands, and all that goes along with those things, and then my plans are to put much MORE TIME into the THINGS I have so wanted to do and NOW I HAVE THE OPPORTUNITY! Get my "Health Advocacy, Health Activism shoes on, put my head into the "real" meat of the autoimmune arthritic issues, do some great blogging, do some very meaningful work for the IFAA, WEGO and for all of those out there that deserve to have better information.  and one add to this list!!!

WAAD14!!!!! World Autoimmune Arthritis 14!!!! Be sure to keep watching, for that is going to be one monumental event!!!

And then never shall I forget, my book. I have it probably "written" several times over. My issue is trying to put it into some type of "interesting" and "catching" way a order goes, so you, the public will WANT TO READ IT!!! IT DOES MYSELF and No one ELSE a bit of good, if they do not pick it up and say "WOW!" She really has some great things to say.... ;)

So, for now I close and I will call this my 1st "Initial" Post for 2014!!!

I hope to "SEE" each of you making comments, suggestions, asking questions, and helping me to help you!!!!


                                                                              

The (IFAA) formally Introduces "The Year of the Patient"

                      IFAA's - "The Year of The Patient"

I am thrilled to share this exciting news with you! The International Autoimmune Arthritis Foundation is announcing 2014 as "The Year of The Patient"!

Here is just a peek at what the IFAA (International Foundation of Autoimmune Arthritis) has "in store"!

Isn't it ABOUT TIME!!! "You" the PATIENT was put as "#1" when it comes to your care???

In 2013, the International Foundation for Autoimmune Arthritis was created as an extension to the International Autoimmune Arthritis Movement 501c3 nonprofit, adding patient-centered research, advocacy, and support to the existing awareness, wellness education, and global network platform.

So what will happen in 2014?
Patient-Centered Research:
We will start off the year with our first patient-centered research grant, funded by Janssen Global, Inc, a study led by IFAA (patients) that will investigate the early signs and symptoms of these diseases, then comparing them to each other and to existing literature used for clinical diagnosis. The goal is to find correlation between the diseases early enough to promote quicker detection and referrals, as well as diagnosis and treatment. No more unnecessary disability!

In addition, Tami Brown, co-founder, has signed on as a permanent PCORI (patient-centered outcomes research institute) reviewer, and co-founder/CEO, Tiffany Westrich, was invited to serve on an ad-hoc basis as the 2nd patient ever to help NIAMS review their clinical grant submissions (National Institute of Arthritis, Musculoskeletal, and Skin Diseases). IFAA will also be applying for additional grants where the patient community works with researchers, but serves as the lead in the project instead of the consultant.

Wellness Education:
We will also be creating wellness education from the Janssen-funded study, aimed to educate both patients and practitioners in new, updated early detection strategies. Also, we will be creating education for patients (both juvenile and adult) that better explains how these diseases work on a cellular level, followed with outlines for a broad, cross-disciplinary treatment menu so patients can learn to choose the path best for their disease journey.

Awareness:
IFAA will continue hosting our Media Awareness Hotline, a service online where YOU can submit false or misinformation published or broadcasted about autoimmune arthritis diseases. Our team will combat the misinformation, working diligently to obtain a correction or retraction.

Support:
IFAA will be providing extra training for those existing volunteers who wish to work with JA patients, acting as advisors, friends, and sounding boards. JA'ers will have the opportunity, through the JA Mentorship Program, to submit questions about dealing with their disease (from how to select a college major, to dating, to advocacy) and our team will help answer those questions and provide advice.

World Autoimmune Arthritis Day 2014:
For the 3rd year IFAA will host WAAD, a 47 hour virtual convention held ONLINE that unites patients around the world with nonprofits, advocates, researchers and an abundance of education and resources- all of which they can DOWNLOAD to their own computer. More about WAAD14 coming soon!



This is just a sample of what 2014 will bring to patients, straight from the patients and volunteers who run IFAA. We are patients fighting for a better today and tomorrow, from our computers, beds, and sofas. As our CEO says, "Together we can move mountains. Bulldozers are so overrated."

Here's to a fantastic 2014!

(If you would like to donate to the IFAA or request more information about volunteering, please visit our website at www.IFAutoimmuneArthritis.org)