Please Come and Meet Our Next Guest Blogger - Kirsten Walters as she talks about her Blog "Not Standing Still's Disease"

Here is the link for the FB page for IFAA!

"Unwell" ... and if you stay long enough, you shall find and see a very different side of me...

....Right Now I know I am a bit IMPAIRED....

cont. from FB post.

...    for me it is worth mentioning. I became a HUGE" Matchbox 20 “  fan when I was living in Seattle. I had bought their first two CD’s(and yes then CD’s were still a huge market) LOL! Both of them really had some songs on their that “not only touched me back then” BUT it was as if every word they had written, sang, and played music to spoke to this very inner core of my being. I recall walking on Alki (West Seattle looking over the Sound back to the City) Beach, and I played those two CD’s and could walk for hours. There is something un EVERY song, that Rod Thomas sings that just expresses (even now and especially back then) in which sounded like many of my poems and short prose. My live at that time was such an incredibly  wondrous, almost esoteric tempo to it, thus something about most of those lyrics, just reached out and “grabbed” me. Anyone that is a Matchbox Twenty fan, knows the song, “Unwell”. It seemed to be the “theme” of my life at that time! Now, I’m not saying “illness” as far as being physically sick, I really was not “mentally” or “emotionally” challenged either. Yet, for some of those looking outside to within me, may have thought to themselves, she seems a little “Unwell”! The fact was those years in Seattle, especially the last three, were the years that taught me SO MUCH in regards to my strength in all ways, my courage to venture out, to a HUGE city, thousands of miles from any family, or anyone I really “knew” that well; in more ways than I can count, I felt each day, I was “Less” “UNWELL”. Not only all of the above, but I rented my own apartment all by myself (may sound silly to some but for me it was a first; I bought my “own” first “very good” used Honda & knew without any help I could pay my car payment, living expenses, and so on all by myself. I “gained” an independence in my those years more than any other in a lifetime! I interviewed all through the downtown part of the city (LOL! anyone who knows Seattle, knows it has some HUGE hills to go up and down in with very busy city traffic), and in fact had taken two previous jobs I had loved being an apartment manager at both! This new one was at a banking institute and at that time it was MEGA busy due to ALL the interest rates, and the “Fannie May” and all of that boon at that time. I got hired on to help be the assistant to the lady that did all of the last paperwork for home loans. I had to know everything from what a Title Policy needed and looked for, the note, the deed of trust, insurance, flood insurance, all of the truth in lending information….. I was responsible for making sure we had ALL of that paperwork and it was correct before they could “close” on the home loan. We also “sold” off “blocks” of them. Of course that was to have more funds that would ultimately turn into more blocks of loans that were sold off also. You get the picture. My salary was MORE money that I had ever made at any job in my life! Now even though was was a fact, I still had those rent, car and living expenses to think about. But I had figured all of that out and knew I would be fine. :) I got insurance coverage, I kind of worked my “own” hours. I was a morning person. So, I would come in at 7 am, way before any of the rest of them showed up. My direct boss, bless her heart had a young son, she was single, or about to be, and she usually showed up about 9:45 or so. LOL!! That mattered not, because as soon as 8 hours rolled around, I could leave. So, I went home early most days also. )BY THE WAY this is PRE AUTOIMMUNE ILLNESSES DIAGNOSIS) days… I did suffer from severe migraines, did all my life, and they put me down at least 2 days when I had one. Anyway, dream life for me… not rich by no means at all. But, I saved a bit here and there and would buy a new outfit, or treat myself to something like a little TV I bought for my apartment back then, etc. Anyway, I am sure many people that “knew” me then, often wondered if I didn’t have a “screw or two loose”, or was missing a few cards from the deck, a brick or two out of the wall etc… because I was “eccentric”. I “danced” life to my own tunes playing in my head. I wrote more poetry and short prose there than ever. I didn’t have “friends” per se, other than some online that we had known one another for a long time. I dressed as I wanted (at that time I only weighed like 118 pounds and had a waistline that was tiny like Dolly Parton’s… BUT not the “TOP” of the hour glass like she did” HAHAHA!!… I loved clothes and shoes… yet with it just me, and my bills, I bargain hunted on the weekends at the Mall nearby, and bought one thing etc… as I could afford it. Yet, even though I felt “business” dressed, and I was… I honestly believe the supervisor OVER my own supervisor was quite jealous! Never did figure that one out… the ONLY thing I DID figure out is that she was a “backstabbing, manipulating, ladder climbing, crush the persons under you, and a plain “witch” of a boss and a woman. Okay, now to pull all of this “insanity” together… Hey good word for this “insanity” …….LOL!!! That song by Rob Thomas” “ Unwell” was the theme of my life… I even would quote some of it at times when it was appropriate, “Oh, no, I not crazy, I’m just a little “Unwell”… and if you stay you will see a different side of me”. I still “dance to my own “weird” tune inside my head”…. I am NOT one to “go along” with the crowds, and I REFUSE to HURT< BACKSTAB, MANIPULATE …. and all of those other “nasty words” to ANYONE! I am NOT a Ladder climber! And if I did NOT get the “promotion” or raise for some reason, as far as I was concerned, then I needed to do a “better” job… and those things like more money, a further up position, more responsibility… all would come in good time. I remain the same. I will “take up” for the guy or gal being stomped on, I think that is why I just about HATE politics, I am NOT a “used car sale man” (even hough I did do that for a few months in my twenties), … you get the picture… if MY OWN SKILLS, personality, aura, …. does not put me in that place, then I need to “turn my sails” a different direction and get with the winds of change that shall make my sail into my own smooth river happen. There are so many days, that I say just this… I’m not Crazy, I’m just a little Unwell, and if you will stay long enough, you shall see a different side of me…. and it is very true… even here in Facebook, a few of those who have gotten to really “know” ME, not just the illnesses me, etc… but this complex, but simple, conundrum, and dichotomy that makes up the wholeness that I am… of course the “autoimmune illnesses” and age have “changed” me in many ways… yet that creative, tend to flow on a different rivers path “me” is still very much alive and “Well”!!!!  “She” does not show up as much as far as to others outside my very personal life very much, yet, if you “stay” a while… you shall see that “different side” of me… … And to “honor” that song… Here are the lyrics… and they just tell a story that was a piece of my lifetime….

 "UnWell" 

           Lyrics  written by Rob Thomas off of Matchbox Twenty 

"More Than You Think You Are CD"

All day staring at the ceiling

Making friends with shadows on my wall

All night hearing voices telling me

That I should get some sleep

Because tomorrow might be good for something

Hold on

Feeling like Im headed for a breakdown

And I don't know why

[chorus]

But Im not crazy, Im just a little unwell

I know right now you can't tell

But stay awhile and maybe then you'll see

A different side of me

Im not crazy, Im just a little impaired

I know right now you don't care

But soon enough you're gonna think of me

And how I used to be...me

Im talking to myself in public

Dodging glances on the train

And I know, I know they've all been talking about me

I can hear them whisper

And it makes me think there must be something wrong with me

Out of all the hours thinking

Somehow Ive lost my mind

[chorus]

But Im not crazy, Im just a little unwell

I know right now you can't tell

But stay awhile and maybe then you'll see

A different side of me

Im not crazy, Im just a little impaired

I know right now you don't care

But soon enough you're gonna think of me

And how I used to be

Ive been talking in my sleep

Pretty soon they'll come to get me

Yeah, they're taking me away

[chorus]

But Im not crazy, Im just a little unwell

I know right now you can't tell

But stay awhile and maybe then you'll see

A different side of me

Im not crazy, Im just a little impaired

I know right now you don't care

But soon enough you're gonna think of me

And how I used to be

Yeah, how I used to be

How I used to be

Well, Im just a little unwell

How I used to be

How I used to be

Im just a little unwell

DREAMS DO COME TRUE!!! Even for the weary and broken hearted!!! This is HUGE NEWS!!!!!

OKAY!!!!!!!!THIS is HUGE!!!!!!!!!! About 3 weeks ago I got an email from the Arthritis.org organization. It was for a "grant application" to go to the get a complete GRANT AWARD to go to the 2014 Arthritis Foundation's Advocacy Summit in Washington D.C. in March... ALL EXPENSES PAID!!! Well, of course I figured I would never hear back, and about 10 minutes ago I received an email from a lady there and I AM GOING TO WASHINGTON D.C. IN MARCH TO BE THERE AT THE SUMMIT...ALL EXPENSES PAID!!!!!! PMG!!!! MY OTHER DREAM to stand on the "White House Steps" and "tell my story" is NOW A DREAM COME TRUE!!!!!!! I have read the email 5 times and I still cannot believe my eyes!!!!! This is so huge words again cannot express how  many emotions and feelings are with me right now!!!!!! It will be March 24th through the 26th!!!!  I've got to respond and of course it is YES!!!!! I am not sure exactly what I said in that lengthy grant application but SOMEONE IS LOOKING OUT for me now!!!!!! Lord, I can't even type!!!!!!   Rhia





                                                             

       

                                            http://www.arthritis.org/

I will give more details tomorrow when I am still SHOCKED, BUT a bit back down to "Earth"!!!!! I have to say, and I do not want at all to sound conceited, BUT HONESTLY I am PROUD of myself, and I feel I truly deserve this opportunity to SPEAK OUT for ALL of us suffering from these diseases!!! Diseases that more often than NOT RUIN Our Quality of Life!!! Believe me, if the Lord does let me get there, every thing I do and say will represent ALL of US!!!!!!   

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!