"Empowerment" When All of Life "Strength" that had Sustained You - Suddenly is Gone - as I Thief in the Night

Honestly, I am here to write, yet I am not sure the words shall even come. The other day I had posted on Facebook and one of my friends there mentioned "I wished I had the knowledge and know how to write things, and say things as you do, Rhia".
I have given thought to that over the past week, and tried to also allow that place, that suddenly was so engrained in me, to be jerked right out from underneath me. The very core of my world was shaken on March 26th 2014.
As many of us, we have events that come into our world "that shake us down into that deep dark cavern" of where we just don't really heed was is going on or not. As the days have gone by, and I have tried to reach into my very soul, and pull out all of the things that are so precious to me, and I mean within myself, I realized even more so that a happening such as the catastrophe like my husbands car crash, not only shook me off my foundation, it has left me in a place of "shock" that I have yet to come out of, I am not sure that anyone else "caught it" or not, but his accident fell exactly one day before my Dad passed away in 2005. If my memory serves me right ( and I cannot say that is does at all) I believe Dad passed away on Easter Sunday, March 27th 2005. It hit me that very evening when we first arrived at Baylor Hospital in Dallas, that it was almost 9 years to the day of these two things happening. In a way, and maybe they also remembered but chose to not say anything either due to the circumstances that were happening at that moment. thus some of my family may have recalled it also. I just have not brought it up, for why at this time pour salt into an open wound, as the saying goes.
In such a very short span of time SO MANY things can change. Until you are thrown into the situation yourself, whatever the circumstances might be, you really cannot imagine ALL of the complexities something like this causes. From me not having my head on straight, and accidentally moving more money from an account than I intended to, so I did not realize that one of my bills that goes through bill pay had not cleared. So, here I was thinking things were fine, then I find out I did too much of a transfer into an account, and then that bill payment came through that I thought already had, so I overdrew my acct. by $.21... I felt so ashamed I was just going to bite the bullet and let it stay and me make it up, but one of the sweetest ladies there happen to have seen it, and asked me what happened. And as I told her, just all of that going on, and I took some money thinking I was good, and put it over into an acct... yet it was more than I really wanted to move, then the bill comes through I thought had been paid days and days before. She as she is, she went to the bank manager and got it reversed for me. But, still, you just don't realize how many things in your life are totally "wrecked" within the wreck I guess you could say, I catch myself looking for my car to go wash it, or now I have a very hard time sitting her at the computer. I was so used to him and I being here across from one another. Even though we may not utter a word to each other for hours, it was just the fact, we were here together. I find myself wandering through this tiny house, and wandering around in the yard, thinking I should just mow it myself. I should be able to mow those basically weeds down... and I need to spread the granules out for the fleas, and spray around the porches, and put ot fire bait, and now I have our bedroom, the ridiculous bathroom, and more over that stupid back room junk catch all room is all going to go. I am going to pitch about 90 percent of it out in trash can bags. I have stuff back there that I will NEVER use what so ever... and I know just from cleaning the windows and laundering the curtains in the other rooms, it just looked and smelled so much more fresh this morning. So, I know allow that pile of crap to go out of there, will again, give me a "new" lease on life.

I just can tell there are some thing that my brain is not quite comprehending... or if I don't have a note or a list (which was already an issue for me) then I am just not on "target".


May 1st, 2014


Ah, the "sounds", Sights", smells, and renewed feelings that come with the rebirth of Spring. The trees opening up their green leaves, as the wildflowers start to pop open. Of course the birds where we are and all of their "voices".... just an amazing sound on a Spring morning just as dawn breaks... and like a silent whisper into a rather loud victory march, the sun comes forth to warm us up once more. Assuredly we can't say that weather has been "odd".... odd, hell, down right insane. I had golf ball sized hail just last week pounding down up us, and you have to wonder are they all practicing with balls of ice for "T-Ball" season... they can absolutely do damage,that is for sure.

although just as quickly as that "rogue" storm marched in, it left us, only to leave a path of destruction from Louisiana to the Florida Panhandle. Yet, on the other side of the nation, California dealing with their the Santa Anna winds and the driving force in fires that burn thousands of acres and hundreds of homes... and they have just barely started.

I've I had tough go of it this past two weeks once again. I have felt lousy and not quite myself, since before I left for DC the last of March. And even half joked about us all going to have pneumonia on the Tuesday we went to the Capitol. It was snowing huge, very wet flakes and it was cold.... even with an umbrella, coat and wrap it was not very pleasant weather to say the least.

What was to follow on that fated trip... came as a shock wave... a tidal of disbelief, and every kind of emotion you could be possibly dream of. I have tried my best to not question, "why"... because if I need to know then it will be revealed to me. I still believe we have the "will" to take our own paths, yet we are somewhat predestend as to what those paths are. I have began to already realize things about me, that I did not know existed, until that day of the accident. And I also realized for the 1st time in my life, it was okay to say "no", I can't. I never thought about me ever "refusing" to help someone, or do something for someone, but I have to had to make those choices these past weeks. I can't be in three places at once, I cannot run on 3 hours of sleep for long, I have to have time to decompress, or I will and am ill. You can throw in the Lupus, Sjogren's, RA, and all of the other issues physically but the point it that I allowed myself to say, yes, yes, yes when I should have been politely saying not this time, but on the next go round I hope to have some sanity back in my life. I continue to find it difficult to even write here... even though I have a billion things to talk about... my new car, which is awesome, the progress Jim has made which is fantastic, Spring coming out, and hopefully getting an oral surgeon closer to begin the journey about my teeth. I can say eventually I will have the prettiest smile I've ever had for sure. I am wide awake, yet I honestly don't want to do this either, and coming from me that is terrible.... I once again have misplaced that inner voice, that keeps me coming back to write over and over again... it has hidden itself now for awhile, and when it finally reveals itself it will have much to do to make up on.

May 26th 2014

It has been awhile... too long really. I've not even truly been here but glad I have come in to see that many people had been following along on my blog lately. I am not sure if they is due to the horrible accident, my wanting to go and then enjoying DC so very much (and I apologize) I WILL talk about it soon. I've just not had the strength to "face" that very last hour or so of that fateful day. Thus trying to tell about ALL of the very incredible things I learned in DC and moreover how many wondrous people I met... it has truly been one of the greatest trips in my life. I surely hope I get "picked" or get into the "platinum status" for Ambassador before next Summit, so I maybe able to go again. I certainly will if the chance arises again.

I've been trying mentally and emotionally with my "reasoning" behind why I am having suck a difficult time of putting words and sentences together.... I am so embarrassed by it, that I have almost am in fear to post anything I write, because my fear is it will not make much sense. I know when I had the pneumonia, I had not been able to type anything that made any sense what so ever. I was terrified the day that happened. That is one say that I was probably more in fear for what was going on with me then any other day I can think of as far as my own self. I was trying to type out an email... I continued over and over to misspell, to type incorrectly, to use the wrong words for what I was trying to say... and as I stood up and realized I was hallucinating so badly... I felt faint but I was hearing things and seeing things. that were not there... I was just walking around the house like a crazy person! I just could not imagine what was happening to me. I had not taken any new meds, I had felt lousy, but I had been fighting a kind of like sore throat thing off and on and felt so drained of energy, but what was causing this so extremely unusual feeling... like I my faint, dizzy, my brain just not "working".... my first thought was to take myself to the Urgent Care Clinic across town. So, Happened Mom had her car that day back so she could go to church that morning, so I called her and let her know something was not right... Thus she came and got me and took me to Urgent Care... Thank goodness, the doctor that saw me happened to also be one of our ER physicians, so that worked out well. He was concerned enough to really send me to ER but then after we saw the lung XRays and he knew I really did not feel like going to ER and further being poked, stuck, blood drawn etc put through another battery of tests, the sent home with probably the say thing he gave me... high powered antibiotics, cough medication, an inhaler, and other pills for my breathing... so fortunately I got home, got on the sofa with my meds and the puppies and we were there all except for the very necessary done... all other stuff was put off until I felt better. Then both my cardiac doctor and my PCP BOTH still here the pneumonia in my lungs. So, I had another round of antibiotics, also my 2nd infusion of Rituxan has been postponed until my lungs are completely clear on an X-ray.... and in the mean time I am hurting like hell due to the lack of a biologic...I t has been a very rouogh 3 or 4 days... Jim is home and he is of course working much harder not having the wheelchair and relying solely on the cane... and me just trying to get used to all of the things that are different now as he takes over a new "home" and new ways to discover how to do things. So, we are "okay" he does to Outpatient Therapy on Wednesday, tomorrow... in Waxahachie..... and for me I am working on getting these teeth all pulled and the "mini implants" put in ... along with insurance to hopefully pay 60 percent of it! Again we take a step forward daily and learn to adapt to this new course... this new pathway of life.....

Announcing the 4th Annual World AutoImmune Arthritis Day! Come Join Us!

JOIN THE GLOBAL VIRTUAL WAVE NOW

“World Autoimmune Arthritis Day is coming May 20th, pre-registration opens TODAY- Get excited and join the Global Virtual Wave by sharing this post!” 

To be part of the wave all you have to do is “share” this post.

World Autoimmune Arthritis Day
Theme: A Day in the Life of an Autoimmune Arthritis Patient

This Global Virtual Wave marks the official OPENING OF World Autoimmune Arthritis Day 2014 (WAAD14) Registration as we start the countdown to May 20th.

WAAD14 celebrates May 20th in EVERY time zone in the world, so the online Virtual Convention “opens” its’ virtual doors at 6am ET/USA on May 19th and runs for 47 continuous hours, closing on May 21st 5am ET/USA. You can visit dozens of virtual booths hosted by organizations around the world, tune in to live Chats by scientists, patient advocates and more, send supporters to the Day in the Life of an World Autoimmune Arthritis Day Patient feature booth, learn about all the latest research and download 1,000's of resources right to your home computer!!!

So let's start the wave and get pre-registered for the event. Those who pre-register get a complimentary WAAD14 limited edition bag (ships internationally). Pre-registration cost to attend is $5.00 USD and $7.00 USD after the event begins at 6am ET/USA May 19th. 100% of the proceeds are used to put on the event.

Learn more about WAAD14:
http://www.worldautoimmunearthritisday.org/Home_Page.html

Register: https://engage.vevent.com/rt/ifaa~waad14

Trying to Place "priorities" in the right spot! Difficult to do when you suffer a Chronic Illness

I just said that I was going to go "rest" and watch a movie with my dogs. After all, I am just barely a week out of "major surgery", even though laparoscopic, nonetheless, major anyway, as my Surgeon, Dr. Sullivan reminded me yesterday. I went in for my week recheck, knowing he would turn me loose to ride my exercise bike... Well, his answer was an emphatic NO! NOT for 6 WEEKS!

I gave him a bit of an evil look, and he began to tell me... okay ride that bike, incumbent or not, and when you come back, and those "mesh" panels have pulled away, the next surgery will be big incisions, and not pleasant at all. So, of course to the best of my ability, I am abiding by doctors rules... so today at least although windy as hell, warm enough that I made my 30 minute or so jaunt around our long driveway. So, I did get some exercise in. :)

And I realize he is right... if I did something stupid, and pulled what he has done loose, then the repair of that would be a much more difficult surgery, that would probably mean a hospital stay. I still can't fathom riding that stupid bike would hurt, but okay, I will behave for now.

I am still sore, still purple from my navel, all the way down to my thighs... yes EVERY PIECE of me, is "purple". I won't give the "details" but you can get the jest of it all, since the hernia's are right at the pubic bone, and blood travels downward, when healing begins, thus due to gravity, several "parts" on me that are not usually purple sure are now.

I had to laugh when I was telling him. He basically just came right out and said it, and I sat giggling and agreed ALL of me was bruised and purple!

I am just so disgusted with everything right now, I won't even begin to get into all that has happened in just a few short days... but I will say between the ignorant people at my insurance company, and the stupidity of the "billers" at the hospital where I have my infusions, along with (if I get another automated stupid Call from Humana I am going to scream)!!! I want to say to that recording, QUIT spending MONEY on these stupid calls and pay my damned bills! Of course they see "coding" is wrong, but rather than question it, they just pay it wrong or right... and even if they "underpay" or believe me I had them overpay a year ago or so, and called to tell them they paid for blood and lab work that DID NOT belong to me... 4,000.00 worth! And honestly, I don't think they cared... But they sure as heck care when "their" premiums aren't paid..

I spent most of my walk in deep thought today. In fact my husband said I looked almost upset... but not really at all. I am more in this place that I have to "split" my time. I desperately have to go allow myself to work on my book, and post more of my "own" stuff here on my blog. Not that what I am doing is not awesome, because it is. But, more along the lines of I HAVE to for my OWN SANITY get back to writing my book. No more of this waxing and waning... or feeling fearful... it is time to put that "foot" in the door, and go for it.

So, that is where my thoughts have been this afternoon.

Actually this morning, I just about have the "mini-manual" and all of the "Hubs" and sites set up with the correct permissions and so forth. I just hope they will be able to decipher my manual.

But, I HAVE GOT TO ORGANIZE and split my time up between my advocacy and my own blog and book. I have been so far out on a limb, with all of my new responsibilities with all of the Advocacy and Volunteer work (which I am THRILLED to do), but in between all of that, I've kind of lost my own "path" up the mountain to get my book written and published. Along with not overwhelming my blog, and FB page with too much of one thing, yet not nearly enough of "me"... which is why I do this... for YOU and for ME... so I have got to stick Rhia back into the picture as of exactly who I am, and not lose all contact of what my very real goal is... to write that book, and to have the very best blog I can.

While I walked... I talked... to myself. I have been faced with "one" reason as to why I won't start the first chapter... and "fear" is the only thing I can come up with is "Fear".... not sure what kind of fear, or what I am frightened of... but it seems fear holds me back from putting my eyes on the goal, and putting my fingers on these keys. As Natalie Goldberg says, WRITE...Write Daily... even if you fill notebooks full of crap, write it anyway.... and in my heart of hearts, I know that....

So, if I seem a bit "pre-occupied", or a bit distant over the next few weeks, I am in the process of mentally sorting out all of this. I want so badly to get that book written I can almost taste it. So, as Tiffany said today in a post on Facebook. I have got to put one foot down and the next one in front of it, or it shall not write itself....


I think right now must be a very difficult time of the year for many of it seems.... each person I come in contact with, is having hell on some level....

May be would should have named this Hell 2014!!!!

Please Come By and Meet Two More of Our Blog Leaders from IFAA's "Systemically Connected"

We have two more "live Facebook" chats this week, and both are going to be wonderful..

Lorna Krump and her blog "Life With RA is a Pain" will be on January 29th at 9 pm (ET) at the Facebook General Room for the IFAA! Lorna is just an incredible Health Activist, Blogger, & lady that lives with several different Autoimmune Arthritis Illnesses. Her blog talks about life with these diseases, and so much more! I know you will really enjoy hearing Lorna!

We also have Polly, "Pollyanna Penguin's RA Blog" as she tells about her life with RA, and also gives us more details on her award winning blog! Drop by on January 28th at 3:30 pm (ET) to hear her live FB Chat!

IFAA Blog Leader "Rhia Steele" & Her Featured Interview - I Would LOVE to See you there!

I am so totally amazed and thrilled at the turnout "WE", meaning IFAA has had on introducing all of our Blog Leaders with Interviews over the past couple of weeks! We still have many more to do, and my hopes are is that you will stop in, say hello, learn some wonderful things about these ladies, their own personal stories, and how they began blogging for "Autoimmune Arthritis Illnesses" of one kind or another! I have learned a great deal about these illnesses, along with the wonderful bloggers themselves. They come from all over the nation, all walks of life, some even "caretakers" for their own children; yet one thing in common, these women blog to help get Autoimmune Arthritic Illnesses information out there, so we can do more research, find educate and aggressive physicians quickly, who know and understand these life altering illnesses. We are wanting to CHANGE that on the average of 4.7 YEARS before many get properly diagnosed!

So, I hope you shall stop by on the (19th, which is the coming Sunday) - this maybe on Monday evening but I will give you a definite day (Whether Sunday or Monday) later in the week!

Introducing! - "Systemically Connected" the Official Blog for the International Foundation for Autoimmune Arthritis' Blog Leader - Rhia Steele!!!!

IFAA's Facebook Page" https:www.facebook.com/IFAutoimmuneArthritis

Now if she looks "familiar" (which I hope so) I do so hope you will drop by IFAA's Facebook page and say Hello!

I am more than honored to be a Blog Leader and an Active Volunteer for the International Foundation for Autoimmune Arthritis! Plus I am even more honored to be a "Guest" Blogger on the 19th!

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!

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!!! 

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)

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!!!! 

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.