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)

I am SO TOTALLY Honored! WEGO Health Awards Nominee & I am invited to be a Judge also!!!

UPDATE!!!!!!!! for Nominee and Endorsements ON THE WEGO HEALTH ACTIVIST AWARDS! DECEMBER 31ST 2013 THE DEADLINE!

Here is my "Profile" on WEGO Health Activist Awards for "Best in Show - My Blog!" Today, December 31st, is the LAST day for nominations and you can also if you like "endorse" me on my profile! This is just a huge honor for me, and I hope to make this one more step to helping ALL of you, out there, the others suffering from these horrendous illneses!

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

Talk about an incredible way to begin the New Year!!!! I've been nominated to receive a WEGO Health Activist Award & last week I was also INVITED to be a Judge in the panel!! I could not say about the judging part, since I was not sure I could. But, today I did get the great news!!! I will post more about this later this evening or tomorrow morning bright and early!!! Do remember if you wish to nominate someone December 31st the nominations close!!

By the way, I got nominated for my "Blog!!!!"

I am so very grateful to ALL of you for the support and well wishes you give to me!!! As I said on FB, these past few months have been a bit rocky in many ways. So, these are just so amazing to me....

Rhia

http://awards.wegohealth.com/awards?utm_campaign=awards13&utm_content=banner&utm_medium=web&utm_source=whcom

Only a Couple Days Left to Nominate for WEGO Activist Awards!!!!!

Please be sure you "run" over to WEGO Health and Nominate your favorite Activists!!! From the "best blog", to best health "activist" geek, there is an "award" for many that you may feel that deserve the "accolades" for their vast efforts in the realms of Health and how they give themselves willingly helping to show more people about different illnesses, make others more aware of illnesses, provide enough "pull and push" to get more research, more medications, more doctors, and more activists on board the "WEGO Health Train" and help to try and give more attention to so many health issues that definitely need to be looked into so much further!!!! 

Take a look at the link below and see which of your favorite health volunteers/activists may fit one or more of these Awards! The 31st of December is the Deadline so don't delay!!!!!

Below are only THREE of the 14 Health Activist Awards being given out by WEGO Health for the year's annual awards event!

https://awards.wegohealth.com

https://awards.wegohealth.com

                                                          https://awards.wegohealth.com

https://awards.wegohealth.com

Blogging My "Real" Life as an Autoimmune Arthritis "Victim"

Some May find my "Blog" a bit Different, so I want to give more of "me" to you... 

I realize that my blog may be a bit "rough around the edges" at times. I would much rather tell it like it is daily in my life. I prefer not to "sugar coat" daily living with autoimmune arthritis, chronic pain, and health issues that almost control my every waking minute!

So, rather than try to sit here, and find ways to give people a look at what myself and my family go through in reality. Doing that to me, is giving you, as another victim of these horrid illnesses a chance to know it is "okay" to be angry, upset, have bad days, say what you feel, not sugar coat your own reality, not have to try and hide the fact that your life is also just a mess at times because these illnesses overtake every step you make.

When you have a flare, nothing is "nice". Everything "sucks". Life is truly Hell! So, I could write about my medications, or find anything else to sit here and say, but that would not be what I need to give those who are following me a "false sense" of the days when you feel like you've been run over my a train! Times when you are on your sofa, or in bed, wishing you could have a break from pain, fatigue, shingles, mouth ulcers, rashes, stomach issues, kidney problems, medications that cause side effects, and this list goes on and on.

When these Autoimmune Diseases decide to enter your life, nothing, and I mean NOTHING is the same!!! You have to "adjust" your life in all ways. There are things you can't do sometimes. Like go out with the girls shopping, or meet the guys after work for a beer. Family get togethers, may find you smack middle in a horrible flare, or worn down from a new infusion, thus you feel guilty yet you feel like you will just have to sit this one out, (probably more like lay this one out). Your "normal" routine of life is completely turned upside down. Often you wake up with pain, and stiffness, that makes you have to take additional time to get up and get going. You find yourself slower at everything. It once took me about half an hour to get dressed to go somewhere. Now I better start at the very LEAST 2 hours ahead of time. Sometimes more than that, depending how I feel that day. You may not have the strength to do laundry, vacuum, dust, clean the bathroom, and make a fabulous dinner. More than likely if you get a couple of things done, and a meal on the table, that is a "good day". Shopping becomes a living nightmare. If you have a huge market or are going to a large store such as "Wally World" by the time you get in from the parking lot, you feel as if you walked a mile. Then if you are truly shopping with an entire list of things, that means "hours" of going through that humongous store!!! Then if no one is with you, that means taking that entire basket full to your vehicle, loading your purchase into your vehicle, and then trying to put a basket somewhere hoping one of their places for baskets is close!!! Plus, I bet many of you have this happen... I have a "disabled parking" plackard. My orthopedic surgeon wanted me to have one when I went through all of those knee replacements, then just all of the other illnesses, shoulder replacement, neck surgery... so I have one.
If you are not absolutely limping, have a crutch, or in some way look "disabled" boy are there the "looks" that you get from others!!! Thus the business about you do not look "disabled" or sick! Now I am one that uses mine sometimes, and at other times I park in a regular spot. If I am alone, and I am there to buy a large bill of groceries, or I am in a flare, not well, weather truly bad, I use mine. But if my husband's with me, or I am feeling okay etc... and especially if there is only one left, then I just ry to park in a normal spot so someone else can use it.

There are so many ways our lives are different. Some of those differences are just almost too difficult to deal with. Vacations you may miss, your hobbies that you used to love. I have a dear friend who loves sports. She used to play baseball, softball, and loved so many sports, yet RA has damaged her wrist and hand, thus that ended her ever playing ball, or other sports she so loves again. I hear story after story. For me, things such as running, snow skiing, mowing my lawn and doing yard work is out of the question. Bless my neighbors heart, he sees I've bought plants, or need to weed the flower beds, or mow, and he insists on doing all of it, and never wants to take a dime for helping. But I know he and his wife and two kids have a difficult time making ends meet, so I always give him money and tell him it is "for the kids"... LOL Then he will take it. :)

Sometimes we see family and friends all but disappear from our lives. It could be for several reasons. One might be there are those that just don't do well around someone who is "chronically" ill. Not in a bad way, but they can't take watching you in pain and suffering. So, they tend to not be around as much as they may have been. Others are just "busy". Since you have "slowed" down, and they are still in that "run, run run" mode, they don't want to be slowed down due to your illness. It sounds horrible but I know it's true. Others just fear the entire ordeal. Either they "fear" it is contagious (sounds ridiculous, but I had someone ask me if it was), or they fear it will cause them to be in a "mental anguish" if they see you in a state of illness. Some are in disbelief that you are that sick. Some family and friends are in "denial". They feel you are making all of it up. They feel it is just like, okay so your knees hurt, or your wrists hurt, well others have "arthritis" & they are up and doing fine. Some think you are a hypochondriac. And that if you would just stop all of those "harmful medications" and take vitamins, eat "right, exercise,  you would "feel better". Or there are those that every thing they see online or on the Television they think it is what you need! My Mom is bad about that? She doesn't sleep, so she watches those stupid "info-mericals" all night. Then when I go over to her house, she has all of these names of rubs, pills, etc. that should "help me". So, I have to come home, get online, prove to her the stuff is pure "quackery" and let her know none of it will help me, nor anyone else! Bless her heart, she is still in that "zone" due to her age, that every thing she sees, hears, reads, she totally thinks it is the truth! She gets phone calls from sales telemarketers constantly. She used to listen to them6, and believe every word they said. I had to put a "no solicitors" sign on her front door. Again she was constantly bombarded with people trying to "pave her driveway", or "insurance her water pipes", or "save her money on her Electric bill".

Speaking of my Mom. I am here to help her. I am an only child, thus I feel it is my responsibility since my Dad passed away in 2005 from complications of a knee replacement. She was and still is in many ways completely clueless about the world. Even small things like using a "debit" card, or putting gas in her car, calling in a prescription refill & putting it in the "automated system". She would not even learn how to use a DVD player we bought her. Dad did it all. Bill paying, handling money and investments, from putting gas in the car, to mowing the lawn, or taking care of just about any and everything. Which was great, BUT he NEVER taught Mom how to do any of it!!! So, when he passed away, it was total chaos here. We did move here, from Seattle, so we both would be close enough to help her. Of course I was already in need of several surgeries, so my first couple of years here were spent in the operating room and recovering. I helped her until I finally got my total disability rewarded, then it I could finally get to the doctors I needed to get to. At the time though I had not gotten the "autoimmune arthritis" diagnosis. It became apparent as the orthopedic surgeon was in my knees, shoulders, and so forth that this was not some regular "osteoarthritis", there was much more there in damage than it could have done so quickly and so early in my life. It was not long after a couple of surgeries on my shoulder and both knees, that my PCP put it all together and diagnosed the "autoimmune arthritic" illnesses. I began to have all types of symptoms.

Back to Mom now that I've given you a bit of "history" about her. So, I also have to do many things for her. It is not usually a huge issue, but there are days, or even weeks that I am busy enough, or have a flare, that trying to take care of "me", and then trying to take care of the house, and then all of her things going on, becomes almost overwhelming. You would not believe the mess that I had to go through with her insurance and the surgery center to get her surgery bill paid correctly! I spent over 6 months trying to get the to "code" the surgery correctly so the insurance would pay. I was treated like trash, I was spoken to like I was an idiot, I was "lied" to, because for 3 months I was told the "supervisor" had to handle it, and she was "out" with surgery. It was all a bunch of bull. I even went out there face to face and they basically said I was wrong, and I needed to just leave. That was in front of all the people in the waiting area! Well, I knew that the orthopedic surgeon did have his own personal funds in the center. Several of our doctors got together and opened it, with another company's help. So. I went to the "big boys". I wrote a letter explaining ALL of it. I had names, dates, what they said, etc. and I told it all. I took it to my doctor's office. About 2 days later, not only did I get a call from my doctor, I got a call from the head gentleman over the entire center, with a HUGE apology!!!!! They were "grafling" at my feet, trying to make amends for the stupidity and ignorance of their "staff" the worked with filing insurance claims. Plus not only was Mom one of the patients that had the same insurance and they had tried to say they owed money that they didn't owe either. The point of me talking about this, IS because all of that took my time up, and lots of it. Even when I was home, ill and certainly not feeling like talking to those "morons", I did it, because it had to be done.

I realize that I certainly not the ONLY HUMAN on this Earth with some type of chronic illness/pain. I also have come to a real eye opener. That is we have a tremendous amount of our population all over the WORLD suffering from Autoimmune Arthritic Diseases!!! And in bringing those facts into the entire realm of this blog post, they also are subject to losing friends, relatives, not having a care taker, or they are a "care taker" for a family member or even possibly a close friend!

So, how do we "balance" the situations? We NEVER know when a flare or symptoms are going to pop up. We may feel great in the morning and have shingles, fatigue, pain, or any number of problems within hours. So, it is almost impossible to try and "estimate" how much or how little you will have the "physical" ability to do. The ONLY way I can do things, is try to make arrangements ahead of time. But, if somethings happens to me, or I am ill, I try to have an "alternative" plan ready. Fortunately, up until about 6 weeks ago, my husband can "step in" and take Mom to the doctor, or run an errand, or whatever she might need, he can handle it.

Of course as "Rhia's Law" might have it, my husband has been in terrible pain. Between going to a clinic and having a MRI, that shows the pain in his shoulder is coming from his neck. Well, I can certainly relate. Same Story with my last surgery. Almost my entire cervical spine was a mess. I had a 4 level discectomy, fusion and 2 replacement discs. So, I totally understand his situation. But, now my "caretaker" is out of pocket. I've had to basically "buck up" and pull not only My "Weight", but HIS and MOM'S also. Now he is in bed with some type of horrible flu, bronchitis or something. It happened suddenly night before last, and I pray I don't get it. I've disinfected everything in this house 10 times! And I am staying as far away as I can. I fear if I catch what he has, I'll be in the hospital with my immune system as it is. I've already been exposed to more than I care to think about having to be at clinics several times with my husband and Mom.

So, WE (WE - as in ALL of US with AUTOIMMUNE ARTHRITIC DISEASES) can and do have a great many "mountains" to climb. We also know about those deep valley's. They can take you in so quickly and put you right down at the foot of the mountain you just climbed up. Of course we also have "rewards" in the sense of the term when it comes to "us", "we" when the time comes for us to assist those like ourselves into a direction of wellness!!! When we use our voices, social media, writing, blogging, sharing, volunteering; ALL of those things are divine intervention that shall lead to better and quicker diagnosis, much more aggressive and earlier treatments, that then can HALT some or much of the damage these diseases do!!! It is "too late" for me. I have so much "damage" that even though we are trying to aggressively work on it, I already have most of my joints either replaced, and the others will probably have to be, hopefully not, but it is a good possibility I face that in my future.

BUT, until the moment I can no longer type (so I will find a program I can speak into and it will type for me), my heart, my soul, and my mind is set on the GOAL of HELPING others! Standing up with other like minded wonderful people that also share in my heart's goal!!! Through our struggle, and trepidations. we have found STRENGTH today and we stand United in our goals to change the face of Autoimmune Arthritis Diseases forever!

So, this is much of "my life"... day to day... and now the part here at the last is the very best. It is my new opportunity I've found with the IFAA, as an Active Volunteer. I've also been able to be able to give my own story to WEGO when I was invited to be on a panel. My blogging shall also continue to be not only here but on the IFAA's blog site. And with the upcoming WAAD14!!!! there shall be AMAZING THINGS FOR EVERYONE TO GET INTO THE Online CONVENTION in early 2014!!! There will be more upcoming information as we get closer to it! So, I'll post more when I know details... Take care of YOU!!!! Then you can help others....

Annual Family Christmas Letter for 2013....

                   How Can It Be Christmas 2013 Already?

I’ve been contemplating over writing this “annual Christmas Letter” for weeks. Although it is a tradition, and I am not one for altering traditions; life in itself gives you no choice BUT to alter, change, move, forward, backward, and sometimes even upside down, as far as the traditional sense goes.

I do just sit here in wonderment of just how quickly this year has flown by. It seems each February that rolls around (my birthday month), makes that year fly by swifter than the one before. As kids we fuss that it takes such a long time for holidays, a new school year, Summer to arrive, time for us to have our driver’s license, time to graduate… 
After you are out of school, in a job, possibly have a spouse, a family, and all of the hustle and bustle that goes with those things, time seems to “turn a page” in a greater way than the years before. Marriages seem to go by more quickly, kids grow up just all too fast, and then you are again by yourselves, with an occasional visit from the kids and the Grand kids. 

As I watch my own Grand kids grow, they are also growing from one stage in childhood so fast, and the next thing you know, they are like my Grand Daughter Heather. Here she is a teenager and getting her driver’s license as they turn 16 in the blink of an eye. My oldest Grand son James jut turned 8 on the 6th of December. As I looked at all of his  birthday pictures on Facebook earlier this morning, my memories were of him, just practically a newborn a few weeks after we moved back to Texas in 2005. I am amazed as I think about them visiting at that time, with their first newborn son together; yet now their is the 2nd one Logan, who is sure not a baby anymore either. It was so cute to see Logan right beside James every step he made in those pictures! He follows his “big brother” around everywhere he goes. Then again I see Heather, the oldest as a young woman, not the tiny 2 year old child she was when I first met her. Time has flown by, and it does just seem to fly more quickly with each turn of a page in life. 

We tend to take “time” for granted. So, rather than spend this moment of time fussing about how time flies by, I’ll spend these few moments to let you know a bit about the homes of our families.

Mom is doing well. In fact, she is doing much better than the rest of us in many ways. Her health is good. But, she did go through a bit of a scare with her heart earlier in the year. She had been a bit short of breath, but she called me one morning to say she could not even walk to the mail box without being very winded. So, I called, got her into the doctor, and they thought it was her heart. They wheeled her over to the ER at the hospital next door. Her EKG, blood work, and all indicated she did not have a heart attack, so that was a good thing. In fact her doctor kept her overnight, and monitored her heart, along with doing labs every few hours to make sure nothing was awry. He wanted her to see a cardiologist just for the sake of making sure all was okay. in fact I took her to my own cardiologist, who is just wonderful. Dr. Meg Sullivan put Mom with a couple of other tests, and one was an echocardiogram. There was a “severe” abnormality of her mitral valve, which would not have been caught on an EKG or blood work. It was “sloppy” and loose, thus blood with oxygen is not all getting where it needs to be, thus causing her to be out of breath. The first “echo” was showing this in the “severe” range. That usually means open heart surgery, the only way to repair that valve. I think they have some doctors doing it with a scope, but I am not sure just how well that is going yet. Anyway, I asked Dr. Meg if we could do something “else” before we consider going through a huge surgical procedure. Mom was of course stunned and certainly NOT ready to even think about open heart surgery and I was also quite stunned myself. I think our cardiologist saw that neither of us were exactly thrilled and in fact both of us, Mom and I were in shock. That was the last thing we expected to hear. So, the doctor did suggest that Mom could “increase” one of her medications, Lasix, so it would take MORE fluid from her body. With that, even less sodium intake, adding more Potassium to her schedule, and “decreasing” the amount of fluids she drank daily. Believe it or not, it worked! The Lord was certainly on her side and all of ours. Two weeks after she began this routine, they did another ultrasound on her heart. Not only did the issue go from “severe”, but decreased that “sloppiness” so much, that her mitral valve was almost “normal”, rather than appearing diseased! Talk about miracles! That was a miracle. So far, that was at the first of the year, she has not had any real issues again. I am sure it may come to give problems some day, but for now, she had a 6 month check up about a month ago, and all appears to be well. I was extremely thankful. Mom has been so very fortunate health wise, that I am not sure she would stand to go through something that dramatic as far as a surgical procedure. She is having some horrible pain issues with her right shoulder. It has gotten so bad she is unable to even comb her hair. I’ve been fussing for her to see our Orthopedic surgeon. I feel it could be her neck, since I went through much of the same with mine. After having a shoulder replacement on the right, then also having cervical neck surgery due to continued pain in my right shoulder blade, I fear her issues could be cervical neck related also. Other than this issue with her shoulder, and of course she is having more problems with arthritis, and a bit “feeble” like having to watch going up and down stairs, holding onto rails more, and that kind of thing, she is doing very well to be 78 years old. She sends her love to all.

Both Jason and Amanda; along with Amanda’s husband and three children are all doing okay. Jason recently took a job not far from where Amanda and her family live; about 30 minutes out of Corpus Christi. So, he spends quite a bit of time with her and her family. I  am happy that they have one another close now. They have been close to each other, ever since they grew out of that “kid sister - older brother” stage years ago. It is wonderful to see them enjoy one another and have a good relationship. She stays on the go as usual. Never a dull moment with the three kids and their friends and families. She just doesn’t know “yet” how to sit still very long! Reminds me of “me” when I was her age. 

Jason decided to change a few things in his life. He is out of the career for now of any type of law enforcement, and is now working for a company out of Corpus Christi in the oil business. He seems to like it, and it seems to be less stressful, of course than the law enforcement jobs. Jason has some issues health wise with what seems to be symptoms of Fibromyalgia. He has had “aches and pains” with his joints for several years now. As of this past year it seems that some other symptoms have cropped up. These newer symptoms seem to exemplify more in the range of “FM” (Fibromyalgia)/“CFS/ME” (Chronic Fatigue Syndrome). He has been taking some medication that seems to be helping and our hopes are that he shall continue to see improvement, and be able to continue on with all of his dreams and plans for the future. 

Well, “our home”. Actually things have been not nearly as “upside down” on the health front as the past few years had been. In saying that, I have had “new symptoms” and side effects from the Autoimmune Arthritic Illnesses. They have not been the most pleasant to say the least. I suddenly developed “double vision” the first part of this year. We first thought it was because I was not getting much sleep. So, I was overly tired most of the time, thus it was effecting my eye sight. I went through several doctors/specialists, lots of tests, including a “temporal artery biopsy”, and in the end, one of the best specialists in the field told me, “Frankly, he thinks it’s the Lupus, but is not sure exactly why it is”. He put a totally different type of glasses on me, with spheres in both lenses. They do a great job correcting the double vision, while I am wearing them. With them off, I still see “double”. Although we are still a bit baffled by it all, we also know when it comes to these autoimmune illnesses that have kind of “taken” over; there sometimes it just “not” a “diagnosis” or “explanation” but to say it is one of those. 
I have made change in the RA medication. I am taking “infusions” every 4 to 6 months. The hope is that this medication will somewhat control the RA pain AND our greatest hope is that it will slow down the progression of the damage to my joints. I have my thumbs that are just in terrible shape. The use of my hands continues to get worse each year. Until I have just about lost all use, or the doctors insist on “fusing” the thumb joints or replacing them, I just do things to help assist me in opening things, buttoning, holding and so on. My only other “oddity” is that I recently developed an “oval lump” on my lower left abdomen. I was at three doctors, had a sonogram, and no one could figure it out! (what’s new)… Finally, one of my regular physicians’, PA (assistant) saw me again, and “bingo” she found the problem right away. Of all things I have a “hernia”, actually I now have 2 hernia’s, one on each side; left and right. Only me! From all I have read and been told, hernia’s (inguinal hernia’s) are EXTREMELY difficult to find in females. Plus, they are usually “genetic” in nature. When we are in the womb, well before even “sex” is determined there are two tubes that form, and after that then the “sex” of the baby happens. But, those “tubes” especially in females can be “weak”. That weakness tends to run in families. So, as my PA told me, my own daughter could be subject to having a hernia or hernia’s also. It is only genetic as far as they know, more on the female side. Even though male babies, often have a hernia(s) when they are born, or very small. But those in themselves, supposedly are not “genetic”. I thought it was “wild” but I did some research and that is exactly what I found. I guess we learn something new no matter how old we are. Life to me stays absolutely fascinating for that reason! No matter how lousy I feel, or what is going on, I still love learning something new all the time! Especially when it comes to the “medical realms” of life. 

Jim, is also having one heck of a time with a shoulder/neck problem. He recently had an MRI, and in fact we have not gotten the results as of the time I am writing this letter. Our hopes are, and fingers crossed, that he is not facing surgery. But, it just does not look good. He stays in a tremendous amount of pain, and of all things, the pain is almost unbearable each time he sits down at the computer to work. Well, being the he designs and develops web sites as a career makes it a bad situation all the way around. I pray that rather than be some that needs surgery, that it may be something that is a “chronic inflammatory” process, which possibly corticosteroids in a larger dose, for an extended length of time, and some powerful NSAID”s maybe the answer. Surgery is just not something he wants to face at all. Plus he is without health insurance at the time. As anyone knows that works for themselves, with things in a mess as they are in our country with the health insurance situation, we are not sure how we will face something surgical in nature. But, I know that our “Higher Power” is watching over us, and “He” will make everything happen as it should be. 

I swore I wouldn’t make this long, but here it is, long as usual. I’ll just say a couple more things. I did have my 2nd PUBLISHED book go out earlier this year. I now have TWO books published, and they are on amazon.com   …   I use the “pen” name of “Rhia” or “Rhiannon” Steele. Both are Poetry/short Prose books, and are named “Ramblings of A Seasoned Soul” and the other is “Time Tattered Musings”. If you want to and have a moment look them up and you can “Look Inside the book” on Amazon, on both and read a couple of pages in them. My hope was to have a “3rd” book out by now. My “dream” to  be a “published” author has came true twice! Yet, my ultimate dream is to have the journey of my life in a book published. I have the entire “story” in bits and pieces all over my computer as well as in my blog online, and dozens of “handwritten” journals I’ve kept since I was around 14 years old. Every time I try to “begin” the book though, I just never quite come up with how I want that very first paragraph, page; the first chapter to sound. All of us have “a book” in us, is what I had a dear friend say to me. In a way that is so true. We “all” have a story about our lives, and how we got from point “a” as a youngster to point “b” in our present, plus we have ideas about point “c” where we hope to be in the future. But, some just never write it. I want to take that step and tell my story. Much of it, I’ve never shared with anyone. Much of it, I have shared but with only those I felt could totally understood where I came from. Yet, everyone that knows me well, especially Mom and Jim, have continued to encourage me to write “the” book, book… as I call it. 

I hope to accomplish that “dream” and write the “ultimate”, “Book, Book”, this year. That is if the “Lord willing and the creek don’t rise”, as the saying goes. As far as the “rest” of our family, “Tazzy” and “Bubba Gump”, our two “fur kids” are just as spoiled rotten as ever. They are getting older also as we can tell. Tazz, our Pug, is the oldest. She came with us from Seattle. That was in 2005. She was about a year old then. Bubba, is a
“Chi-Weenie”, and he is a character. They both keep us laughing, and talk about “separation anxiety”. They “cry” if I or Jim leave to go to the store! Bless their hearts, they are so accustomed to the both of us being with them. But, they are a joy, even though they can aggravate the heck out of us as times also. Just like 2 kids for sure!

My “projects” are many. It seems I always have my “fingers” in a different pie. I recently became an “Active Volunteer” for a non-profit Foundation that is trying to help bring awareness to Autoimmune Arthritic Illnesses. I just “graduated” from a several month class learning about the Foundation, and all they are accomplishing. It is truly an amazing story. The “founder” began about 4 years ago, after she was diagnosed with Rheumatoid Arthritis. She wanted to make a difference and she has truly already done “miracles” through what started out as a “Buckle Me Up Movement” and a bracelet she made with a “belt buckle” at her apartment in San Francisco. From there it has grown to her and 4 “co-founders”, became an official non-profit foundation, and is about 35 volunteers strong and growing quickly. She has honestly accomplished things in 4 short years that many would never accomplish in a life time. And ALL of us have one or more Autoimmune Arthritic Illnesses. The Foundation is International Foundation for Autoimmune Arthritis. I would love it if you have a moment to take a look at their website. Even it does not really tell just how incredible this truly is and how many lives she and all of us as a team shall touch! You can visit the website at: 
http://www.ifautoimmunearthritis.org  …
Also, I will be doing some blogging on their own blog, which is called “Systemically Connected”. Plus my own personal blog, “Gaze Thru Pain - Lupus/RA & This Foggy Brain” is the name of it, and the URL to my blog is :  
http://rhiannonsrisetodreamstate.blogspot.com  …
I have to laugh, of course, as I say every year; I’m not going to make my “Annual Christmas Letter” so long! Of course it is always long, and probably longer than usual. I find as I write, there is lots more that went on during the year, than I think did. 

My hope… Our Hope is the you and your families are healthy, happy, and enjoying one another throughout the holidays. May you find peace, joy, and most of all love throughout 2014 and beyond. Know that we think of you often; even though we aren’t close physically, in our hearts and spirit we are always right there.

Much Love, Merry Christmas and A 2014 that shall be Wonderful!  Rhia,Jim, Tazz, Bubba… and All of Our Family!!!! 

Holiday "Lost" Spirit & The Apparent Lack Of Giving of Self To Find Your Light

Taking The "Money" Out of the Holidays to find the true Reasons for This Wondrous Season

I usually have posted my "annual Christmas letter" by now. I decided this year to wait. I was not sure I even wanted to post it here and on my blog. I have first hand watched so many people that are dear to me, both "right here" and those that are my "FB Family", go through so much pain, suffering, fear, shock, and dreadful things especially within their health, that I find it very difficult to try and make this holiday season "Happy" and feel "Blessed". How do you feel "blessed" when it is like the entire universe has fallen in on you, and that black hole that the universe came from, has now swallowed you up in it, and pulled everything in on top of you??? I know, I know... Faith!!! I've lived in the footsteps of "faith", "hope", & trying to just "be". I have tried my best to "take all the bad" and try to see that positive side that is supposed to come from the resonating facts that it seems nothing lately is very good. In fact if anything, there is just too much "bad". I managed to write my Christmas Letter this year and I did put it in the Xmas cards I sent out. But, even as positive as I tried to be, I feel the ones who read it, will think I want them to "feel sorry" for us, or think I am griping and moaning. Or they will think "Wow" what a mess? I am holding on by my "fingertips" to the rope of faith that always in the past, has "sustained" me, no matter how bad things got. In my past life, things at one time or the other probably have been "worse" in many ways. But, as far as health wise, for myself, my family, and so many of you, it cannot get much worse! I hear it, I see it, I read it daily, everywhere you turn, people are hurting. I know in other ways we hurt also, but I am speaking more about the "physical" pain so many of us are dealing with. From all of the drama around autoimmune diseases, which seem to be running rampant in our world, to those I know that are so dear to me battling cancer, several with diabetes that have now had to begin having dialysis due to kidney failure. These are people in the prime of life! Many my age, and like myself, they are seriously ill in one way or the other. Yesterday, I open our tiny daily paper, and TWO guys 19 YEARS old, were in the "Obituary" column! I was just flabbergasted to say the least! I could not believe my eyes. And what makes it worse, it has been that way now for months. It seems like each day, I open our "Daily Paper" there are people who are in there early 50's and some much younger that are passing away! I realize Ellis County is not tiny, but it certainly is not some huge county with many large cities in it! We have no "cities", but more like towns. Even our county seat, Waxahachie, is not a huge city by any means. So, how can so many people, at such a young age, in a smaller community like this, be so very ill?? It seems like insanity! I had a talk with Jim after seeing the "evening news" yesterday, that all we hear on the news or read, is "bad". Nothing "good" is ever broadcasted. As we talked about it, he said it is because "good news" does NOT sell! In other words, our news is full of the "bad" because that is what brings readers and watchers in! How sad is that? As I began to repute his statement, I began to wonder if what he said is really true? Have we become a society so complacent, so weary, so looking for the dramatic and the shocking, that "good news" does not sell? I have to think he is probably quite right. Look around. Even with the "spirit" of what this season is all about... greed, money, more about "how much" you buy and give for gifts, how "pretty" your tree or decor is, how many gifts under the tree, how many parties you attend, with the latest dress and accessories on... along with how many toys the kids get, how much you spend on your kids, getting them the "latest and best" and most wanted toys on the market, not sparing what you spend at all. I've watched my "debit" card purchases lately be so slow in going through the system. I thought about it, and it is because SO MANY people are going DEEP into Debt, for the New Year that is not even here yet! Those credit card limits are moving to the max fast for many, because rather than being about the "pure" meaning of this holiday, the monetary portion has become number one! The part about the birth of Christ, and what His journey on this earth meant, until the day His "mortal" life was taken, so He could stand in the place of us for all of our many transgressions. I know that the "season of giving", pretty lights, and festive decor are a part of the celebration of His birth. But, we have become totally wrapped up in buying, spending, and thinking about the material things, that the spiritual has been thrown out the window, bath water, bucket, baby and all... as the old saying goes... Rather than getting "better", it seems to just get worse every year. I've witnessed it here my hometown for weeks!!! No matter WHEN I go to the market, or any store in town, no matter the time, the day, everyone is packed like sardines in the stores!!! I have to wonder how people are shopping constantly??? In the middle of the week during the early morning, and early afternoons, the stores are full! I told Jim it appears that people just stay in town, and it is vicious circle... they just drive and shop from one store to the other and must never go home! It sounds like a joke, but heck how can people afford to be in stores constantly??? I try MY BEST to STAY away from shopping!!! The longer I can remain at home, out of all the stores, the less money I am throwing out the window. I've found that "stuff" that I used to think was so necessary, I have come to not need nor miss at all. So, when I began to "make do" with what I have at home, I dramatically lowered our "cost of living" each month. Yet, even with all of the coupons, sales, free stuff, stock piling, and shopping as wisely as possible with always a list that I try my best to never swerve off of, we are basically in the hole monetarily like everyone else. Between the two of us, just the medical bills have been ridiculous the past month or two. Jim has no insurance, so when you are a "cash pay" patient, it does not take long for the "cash" to run out! And we have just about "cash paid" ourselves to be considered in the poor house. I am rambling on. I so wanted this to be about the "sunny" and positive light of the season. But, when every day you run into those that have the same horror stories in their own lives, it makes it difficult to find the "light" in that black hole of darkness. I still "stand" on my rock of faith. But, at times it feels like the waters of life have "broken" down that foundation some. I lately, have not felt as strong and sturdy on my faith's foundation as I usually do. Maybe all of us feel this way, but just don't want to admit it... So, call me a scrooge... or think I am crazy, maybe feel like I am giving myself a "pity party", but no this is not about "me" but about the "droves" of us all around, everywhere I look... I DO WISH YOU a Better Day, and beautiful warmth of family, friends, food, peace, understanding, good health & most of all love during this holiday season. I also pray with all my heart, we each find "our" foundation sturdy once again... As I try to cast my burdens off my shoulders, and give them over to my Higher Power, I pray we are all healed, mind, body, heart and soul.... Merry Christmas!!! Rhia

"Resolving Resolutions" for 2014 & Weird Weather, High Humidity in December, & RA/Lupus PAIN!!!

It's Time for A Chance To Touch Others Lives, even through Autoimmune Illnesses, You CAN make A Difference!

As I am deciding as I do each year at this time what I shall decide to try and "change", do more of, less of, try new, stop the old... in other words... what some call my "Resolutions" for 2014, I actually don't like the term "resolutions". Simply said, more often than not, it is a "cliche'" and those things usually don't get accomplished. I'm not saying "we" just make them for lip service, but it has become this tradition to make your New Years Resolutions. Whether it be to eat healthier, quit smoking or other bad habits, visit family more, exercise more, get stress under control, and the list of those things we want to try and do or not do, to make our "New Year" a fresh beginning. As we press forward quickly into the 2014 year, and I do mean QUICKLY; as most of us, I also am reflecting upon 2013. I managed to get my 2nd prose and poetry book published! That was a great achievement! Yet, I am somewhat disappointed as myself because I did not get as far on my "life's battle with AA illnesses" as I wanted to. Last year 2012, I had made a promise to myself to have it ready for the last look overs and edits; then have it ready to publish in February 2014. At that time, the task seemed very possible. I was thrilled to have made myself a goal in date form. So, I put my eyes on the road of writing, yet got wrecked and knocked off that driven path several times over the course of 2013.

As I had begin to say in another blog post, that I still have not "published", I had been writing about our little neighborhood and town in general. Usually right at the first of December, every house on my street has some Christmas lights and decorations, including us. It is like we almost have an unspoken tradition on the block that we all put something up for the holiday, even if it is just lights. We have icicle lights that look amazing on the front of our tiny home. I had decorated my two beautiful planters last year with wrapped "presents", Xmas Flowers in silk, and had lights around those also. I had little sacks that I put the tiny battery operated tea lights in, in every window in the front, and always turned them on all night about the last two weeks before Christmas. A door decoration, our tree with our at that time 10 "sleigh bells" we order each year as a tradition from our very 1st Christmas together, little decorations that I hang up above each doorway in the house, cup towels decorated for the holidays, and my Christmas Bedspread set that is just beautiful with these "golden colored" sheets I use with it. At one time Jim and I even made a new Christmas puzzle together to hang up. It seems we either got bored with those (I have like 40 we put together, put on a backer board, and I have them hung up in the house. I have three "logs" that I had gotten from a huge limb that fell several years ago from one of our trees. I took the saw and cut off a fairly thick section about 14 to 16 inches long or so. Then I take Xmas flowers, ribbon, tiny decorations, cotton for snow etc, and decorate all three of them. One for each room we are in the most. Kitchen, Office and Living Room.

But, as of this morning, one neighbor has his lights up. Not one other home is lit up, including ours. As I began to reflect over the past couple of months in our own little world, there are MANY, MANY of us who just almost "missed" the fact that holidays are here! From the horrible things happening in our nation; destructive storms and weather, to wildfires, droughts, floods, crops destroyed by bugs. People are still hurting from job loss, homes being foreclosed on, trying to just feed a family, money is tight for a huge amount of our nation and around the world. I had a conversation with a close friend of mine. She had told me her husband, who has been with a company for 11 years, had his Christmas bonus cut down to ONLY 10% of what it always was!!!! This company is NOT hurting by any means. It had the financial ability to treat its employees right. Yet, one bad apple in the bunch, with greed as green as a gourd in a "management" position, took away from those who have worked for it, so he made himself look good. Thus his "bonus" is quite "stuffed", and the others that have been loyal employees for years, are facing Christmas, with children, and no idea until the last moment, they are not going to have the bonus they are expecting. GREED! It is all over this world!

As I look around at my sparsely decorated home, and see that we are certainly not alone, it instills in me, that we must open our eyes, and open our hearts to make a difference in this nation in the coming years.

Whether we are advocating for a medical and health causes, government cause, specific health problems, domestic violence, and all of the other 100's of Charitable causes we contribute to, we are giving of ourselves to make a difference in the quality of life for others. To me, giving of yourself, through being a volunteer for an organization you truly believe in, is one of the kindest, compassionate, and self less things you can do.

With "one" person's voice, we can "change" the world! One leads to two, two lead to 10, and from there it grows, shapes, expands and becoming a beautiful thing.

We can all give a bit of cash here they and yonder, but to give of your time, of your heart, and do it freely without an provocation but because you want to make a difference in the lives of those who suffer and who will suffer without OUR voices uniting together!

So, as we reflect on what is truly precious in our holidays activities, or as you think about some of those "New Years Resolutions" give thought to giving of "your time" as a volunteer online to something, someone, any cause that touches your heart and soul! Within those moments that you give of yourself freely, you shall find a peace that does pass beyond all you could ever understand....

Hopeful for a better year in 2014.... Rhia

Introducing WAAD14!!!! Join Us for an International Online Convention of 2014!!!

World Arthritis Day 2014!!!!

World Autoimmune Arthritis Day

November 4 

Are you ready for WAAD14? Are you ready for the largest virtual gathering of nonprofits and autoimmune arthritis resources available under one roof?

Get ready... while WAAD14 is hosted for 47 consecutive hours ONLINE at a separate website/Virtual Convention site starting May 19th at 6am ET/USA, the Countdown to WAAD14 starts in March!

This years' theme, "A Day in the Life of an Autoimmune Arthritis Patient" will kick off in March with dozens of nonprofits from around the world joining forces to play "Amazing Race" type educational awareness games, all created and managed by your WAAD14 creators and Hosts, the International Foundation for Autoimmune Arthritis.

Get excited for WAAD14!

If you are a nonprofit and want to sign up please email Tami@IFAutoimmuneArthritis.org.

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

             Representing International Foundation of AutoImmune Arthritis

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

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

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


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

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

"The International Foundation for Autoimmune Arthritis".

The "IAAM" was the "infant" stage of IFAA. Beginning as a "Movement" - it was named "International Autoimmune Arthritis Movement", then "moved" forth to be the IFAA.

So, the "IAAM" means (on the rubbery bracelet)

I am..

A Leader For Change,

Hopeful,

A Believer in Progress,

And Rebranding Stereotypes.

I Am an Advocate for

Autoimmune Arthritis Awareness.

    http://www.IFAutoimmuneArthritis.org