The Arthritis Foundation and Our "Victory" from the 2014 Summit!

I am so elated to know my "voice" was in part what made the "Summit" on Capitol Hill a Success Story for Us as Patients, Caregivers and more, along with such an Amazing Success for the Arthritis Foundation!!!!!

http://www.arthritis.org

It is with pride that I talk about my own personal story and share it through the Arthritis Foundation. I know in my heart they truly care about us as patients. I am so pleased to be able to help out. I am also so proud to be in a very "elite" group which is the "Platinum Ambassador's" for AF!!!!

Wishing Your and Yours A Very Wonderful Holiday and A Happy New Year!

Before time flies by and I don't get here to post as I want to... I am doing this a few days early, so the "brain drain and brain fog" does not take me away from doing this.

I am writing a long piece about the holidays, the things I miss so much, that I can't do anymore because of the Autoimmune Illnesses, and just how heartbreaking the diseases are for so many. They take the quality of Life away that you had, and turn it upside down. They often take away many things you used to love to do, even small things we used to take for granted now, are sometimes impossible to achieve.

I shall post it when I am finished but for now, I want to ...

WISH YOU AND YOURS AN INCREDIBLE CHRISTMAS, A 2015 THAT SHALL BRING PEACE, HARMONY, GOOD HEALTH, PROSPERITY AND MANY MORE OF THE WONDERFUL THINGS IN LIFE YOUR WAY... and I also wish our WORLD would FIND PEACE, A WAY TO GET ALONG WITH EVERYONE, COUNTRY TO COUNTRY, NATION TO NATION, NEIGHBORHOOD TO NEIGHBORHOOD... FOR EVEN IN OUR OWN TOWNS WE SEE THEM DIVIDED AND IT SHOULD NOT BE THAT WAY... So the saying from the Word of the Lord... 

Peace on Earth and Goodwill to "Men" and Women....

One of Our Own Tiffany Westrich on this mornings session of "The Doctors"!!!!

An International Autoimmune Arthritis Movement of awareness is launching THIS FRIDAY, December 19th, the date the International Foundation for Autoimmune Arthritis's short segment on Rheumatoid Arthritis airs on national television.

Use this link to get to the page on "The Doctors Site"IFAA/IAAM" Tiffany Westrich Robertson TODAY on "The Doctors"

Will YOU join the Movement? Here's how:

1. Be willing to share your story on Social Media starting on December 19th, 2014. This is the date the Doctors' will air a short segment on Rheumatoid Arthritis, featuring IFAA's CEO and this is when YOU should start sharing YOUR story about your journey with Autoimmune Arthritis!

2. Decide what you want to say. In just a couple of paragraphs, tell the world what makes your disease different than other arthritis and autoimmune diseases.

3. Share via Social Media. Tag IFAA's Facebook and/or Twitter. Please also use hashtags #AutoimmuneArthritisAwareness and #IAAM.

Why should the world just view ONE story on the 19th when they can see 100's???? If you are posting, we'll be sharing!

Note: This Movement will begin on Friday, but we'll keep it going as long as YOU keep it going. Want awareness for a day, submit for a day. Want it for a week? Keep submitting for a week. Want it for a YEAR? Keep 'em coming, we'll keep on raising awareness together!

International Foundation for Autoimmune Arthritis 

  you can share by posting on this page (you can start your own post) and we will start sharing stories on Friday! You can post after Friday as well, we will keep sharing stories as long as they keep coming in!

An International Autoimmune Arthritis Movement of awareness is launching THIS FRIDAY, December 19th, the date the International Foundation for Autoimmune Arthritis's short segment on Rheumatoid Arthritis airs on national television.

Will YOU join the Movement? Here's how:

1. Be willing to share your story on Social Media starting on December 19th, 2014. This is the date the Doctors' will air a short segment on Rheumatoid Arthritis, featuring IFAA's CEO and this is when YOU should start sharing YOUR story about your journey with Autoimmune Arthritis!

2. Decide what you want to say. In just a couple of paragraphs, tell the world what makes your disease different than other arthritis and autoimmune diseases.

3. Share via Social Media. Tag IFAA's Facebook and/or Twitter. Please also use hashtags #AutoimmuneArthritisAwareness and #IAAM.

Why should the world just view ONE story on the 19th when they can see 100's???? If you are posting, we'll be sharing!

Note: This Movement will begin on Friday, but we'll keep it going as long as YOU keep it going. Want awareness for a day, submit for a day. Want it for a week? Keep submitting for a week. Want it for a YEAR? Keep 'em coming, we'll keep on raising awareness together!

(Photo: Left and Right- Doctors from the episode, Center Left- CEO of IFAA, Center Right- Pfizer Representative/Segment Sponsor)


http://www.thedoctorstv.com/articles/2865-managing-rheumatoid-arthritis

And above is the link to see Tiffany and the important information she shared!!!!
 

Missing Many of Life's Amazing Things ... through the Eyes of an Autoimmune Patient

Memories of What The Past Life meant back then, and How to “begin” Anew Once Your Life has been totally turned upside down and pulled inside out…

I started writing this yesterday evening. Then I worked on it some this morning. I have a great deal to add. But, I am in the middle of having the Flu. I woke up yesterday morning with the worst headache, even worse than any migraine... and my entire body from head to toe hurt and ached. I knew I had to been running a fever, thus I was. It started at 99 degrees, and quickly began to rise even after aspirin, Tylenol.... it was already up to almost 101 by the time I decided what to do. First I called my PCP. But was on hold at least 20 minutes with them. Thus even though I did get to leave a message for my doctor, I knew he would probably need to see me. The last thing already figuring I have the Flu, and then my Autoimmune system compromised.... I decided as badly as I felt to go to our local Urgent Care Center. So, I did. Thankfully when I arrived hardly no one was there and I got into see the doctor quickly. He did verify I have the flu. I got the Tamiflu script and he told me to be prepared for a horrible cough to come. So, he gave me cough medication to be prepared for that. Anyway, I wanted to at least get this much posted... and I promise when I am feeling better to finish it.... but here is the beginning of just how much your life changes when an autoimmune or chronic pain or illness comes along...


I had this come to mind yesterday afternoon. I was doing something in the kitchen and I got to thinking about just HOW MUCH life has changed within the past 20 years. Some of those things are okay to gone and blown into the 4 winds. Some although, have created turmoil in our lives, and honestly it scares the hell out of me.


When I think back just 10 years ago, Jim and I had first met, in 2003, on a Memorial Day Weekend. I was searching at that time for the “one” special person in my life that I could share everything with. I actually went to Seattle thinking I had found him. Yet, that relationship was never meant to last. As I’ve seen and felt now, I realized that relationship was never really meant to be. It was more of a stepping stone to get me out of Texas, out of the horror of Domestic Violence that had been dragging me into the black hole of no where. I needed a drastic change in order to get my own life back, to get a new perspective on life, and a new, The ”odd”  part of it all, is I went not truly prepared as far as my clothing, my attire was more for a lighter cold, and not a heavier cold weather. Fortunately, the weather was fairly nice at that time of the year (I had arrived in Seattle at 8:00 pm Halloween Night 2001).

I think back on the times even before Seattle, before the Autoimmune Illnesses began to rear their ugly heads. Those days are for the most part all gone. The years I could decorate my entire home for Christmas. From the kitchen, bedroom, to the living room, kids rooms, bathrooms and even outside the house. Everything was in a “Kris Kringle” theme. I was always so Christmas oriented, and I never wanted it any other way. That was just one piece o the puzzle of life, that always seemed to make sense. 

Never back then did I ever give a thought that life would be “different” and that I would not be in a situation that I could no longer do so many of my daily living activities that I had become accustomed to over the years. I had a few instances that due to Migraines I was to bow out and not attend a few things. Yet, never would I have dreamed within 10 short years, I would never be able to do so many of the things I loved to do again. But, it had and had happened.

I can’t blame it on anyone or anything, I’ve just fallen into a realm of life, that has robbed me of the beautiful things I used to be able do. This is an insight as to just how much my life, as well as many others lives, have changed from the bottom to the top in so many different ways. We don’t even realize how many things are never the same. I think we become so complacent in some ways, while our concentration then goes to other places where we never had to go. For instance, new doctors, all of the different diagnosis, medications, what we can do with diet, exercise, different and alternative ways to help ourselves feel better. I think for me I went into the “untrue” mode. I refused to believe I had a chronic illness or illnesses that would take my life and flip it all around. Then for many, we go from doctor to doctor, fighting insurance companies to pay, finding out some doctors that we think “should know” about our illnesses do not. Physicians had so “specialized” themselves to the point that one Rheumatologist may deal with RA, but not really treat Lupus. Another may deal with Lupus, but not really deal with MS. Multiple Sclerosis in itself a strange disorder. It is more of an “autoimmune illnesses that harms the nerve endings” thus often time a certain type of Neurologist maybe the doctor to see. Yet again some Neurologists know little or do not really treat MS. So, it can be an extremely frustrating, trying, wanting to give up time that will actually take YEARS in many cases to get the “right” physician, who knows the correct information, and can properly give you a diagnosis, that ultimately can then be addressed and treated.

So, a couple of days ago, I got to thinking about the “little everyday things” I no longer do. The list continues to get longer and longer. I no longer cook as much from “scratch” as I used to. Baking has always been one of my favorite things to do. An example is just about every year since we moved here in this house, I have made home made pumpkin, date, banana breads and more. Then one year I actually made “mini-loaves” of fresh home made baked bread right out of the oven. It turned out so beautifully. I also make sugar cookies, cut out and decorated, fruitcake from my own “family” recipe, fudge, sometimes peanut brittle, cookies with the kisses in the middle, and more. We always wrapped it all up individually in decorated plastic wrap, then made a “Christmas Sack” for each of our 5 closest neighbors. I was a highlight of our holiday. I spent weeks and weeks baking and cooking hand and home made everything.

This year things are so just under the radar of holidays, that we probably not give anything to the neighbors, if so it will be only a few slices of fruitcake. I’ve not made any of the breads, the cookies I am not sure if I will feel like it, especially now since I have the flu! I don’t do as much baking from scratch at all, but have had to go to boxed cake mixes and store bought frosting. Cookie mixes rather than me put them together myself, and same way with pies. I often buy the “canned” fruit, or creme - like key lime or lemon, then I do make a crumb topping for them. So, that is just one of the many things, I no longer am really able to do. Either fatigue, or being so slow at everything, or being in pain, or feeling ill… even my own “daily home” cooking has fallen below “home made” which is NOT good because everything is full of salt, sugar, even the “light”, “low fat”   or low carb stuff tends to be not that healthy at all,

I used to mow my lawn, and do all of the yard work. From planting, to gardening, to flower beds, and house plants, I did it all. Now I do well to half way rake up leaves, a couple cans at a time, and forget the mowing, weed eating, and even trying to hoe is very difficult for me.

I can no longer wear my 5, 6, and 7 inch platforms heels. I have loved those so much even before they became all the rage again in the last couple of years. I have 3 pairs of very high heeled platforms that I totally dream of wearing again. When i go into the shoe store it almost makes me sick to see all of the incredible high heels and platforms. yet I cannot even attempt
to think about wearing them out in the public. I would certainly now fall, due to my artificial knees, and taking a chance of a fall, just is not appealing when I have “severe osteoporosis”.    

Of course no snow skiing which was my biggest thrill. I can still somewhat play the keyboard, piano, and I can still band around a short while on the drums but not for long.

Some things I can do, but it takes me 20 times longer than it used to. If I am getting dressed to go out somewhere special I must start at least 4 hours early if not more. I am then lucky if I am ready on time, Even typing this, of course I also have the flu at this point, but my wrists, thumbs, hands and fingers are beginning to hurt and become too stiff to type. The brain fog hinders what used to be a mind that could spin around in 15 directions all at once, and I could multi-task and get them all done and feel wonderful as I did them. I miss college classes. I miss being able to walk 5 or even 10 miles a day. I miss traveling, vacationing, heading out for a weekend  get away.

I get sick of planning a day around being sick. I hate getting up and never knowing if I will feel “okay” or horrible that day. I am pissed that I can’t do things like put up my light fixtures, finish mudding the bathroom walls, painting the outside of the house, laying my flooring in my bathroom and kitchen and all of the DIY things I used to do on a daily basis, never giving a thought that I may not be able to do the little things, like get flowers for Christmas out to Dad’s and my Grandparents Graves. By now I would have Dad’s Tree out there all decorated… and Poinsetta’s for my Grandparents.

Sometimes it is difficult for me to type, to write, and to clip coupons. My hands don’t seem to work as well, and neither does my brain. I FEAR that if I don’t write my books (the next 2) very soon, I may lose the “brain power” wording, spelling, and aptitude it takes to write a book and get it published.

There are days that even the simplest words seem impossible to spell. Maybe the simplest sentence I have problems with finishing properly. I am one to NOT use the same word over and over again. But, without the Thesaurus, I would never have the brain as I used to have that remembered everything, no matter how large or small it was. Days I lose that ability to find them within my own thinking.  I used to be a grand speller. I had 100’s on every spelling test and then I won many spelling contests because I was so great as a speller. People cam and asked me how to spell a certain word, and used to I could rattle it off without hesitating.

Being able to learn new things. That was my forte’. Any and everything I didn’t know something about, and was interested, I wanted to learn. And, I did. Whether it was flying a plane, or knowing how one flies was remarkable to me. Even my “Annual Christmas Letter” that was usually all decorated with a border and colors for the typing, got left with me printing the letter on regular paper, in black and white, with no border. It was too much this year for me to deal with and I knew I needed to get the cards out before it was too late!                                                                                                     



More to come......

And thus it continues... the brain fog is so bad, I forgot I had already posted part of this... so here is more.....

Even at this, I am almost feeling like I got "off topic" of what I wanted to say... but I shall post this next installment....

It continues to be the “little” things I had enjoyed so much in my years before I became chronically ill. I was able to do just about everything from going to college full time at night, working full time, taking care of my two kids, a home, a mortgage, car payments, and everything that goes along with those things.

The day that I knew for certain I would no longer be able to hold down a full time job anymore, was on of the most depressing, the saddest, the fearful, time of my life. I had no idea how I would make it in Seattle. Jim and I had already met, but he was living with a friend over by Lake Washington, he had a full time job, that actually was knocked to part time, so he had his own portion of rent and bills to pay. I was very leery of anything at that time…. from even thinking about Jim and I, we had just really met, to finding another at least part time job. I had rent monthly, and a car payment monthly, plus my bills which were not that bad with just me. So, I looked actively for a job daily, from the paper, online, asking around, and even went for a couple of interviews both at banks. Both seemed like great positions, but they also seemed very stressful, and it would mean me working MORE hours that I already had been working, which was one reason I got ill in the first place. So, I was offered both, but turned them down graciously. This was about time my lease for my apartment would be coming up. I knew that the woman above us was not thrilled with our TV (which was a 16 inch tiny TV with an antenna inside, or she would gripe if we smoked outside on the deck… said she could smell it… well there were lots of wooded areas, and honestly I think she was just jealous that I had found someone that was coming over fairly often. Anyway, the problem was my own next door neighbor. He was the one with the very loud music and television. But I knew I needed to go and not sign into another year’s lease. So, when it came time to make a decision, I decided to take my stuff, and move in with Jim and his room mate. It seemed “smart” and cheaper at the time. We did have some beautiful memories of Lake Washington, and it was an incredible several months we spent there before we decided it was more than time to move out and find our own place. We did just that. We moved just North of Seattle into Everett. Smart move, loved our apartments and the manager was such a sweetheart….

 It seems from there things began to look brighter… and then in 2005 March, Easter Sunday, I lost my Dad to a brain infection from a knee surgery that just never turned out right. He had that surgery on Feb 15th 2005 my birthday. So, there is always mixed emotions when I try to celebrate.

We found ourselves going ahead with our marriage plans in Vegas about 10 days after going back to Seattle, for I knew Dad would have wanted it that way. Then we also knew it was only a matter of time, and I would need to be back in Texas, close to my Mom. Being an only child, and my Dad took care of everything, Mom was not even able to put gas in her car.

At the time, I had already hired an attorney, and was in the process of my 2nd appeal for my Disability, Social Security benefits. After a short time in California, for a job Jim got that was not working out, we loaded up the U-Haul once again, and headed for Texas. We had no clue what we were going to do when we got there, but we knew we had to come back. So on December 19th, 2005 we arrived in Ennis Texas. I had already checked on apartments, so luckily we got into one just a couple of days after arriving. They were so nice and hurried to clean it, touch it up and laid new carpet. So, we celebrated that Christmas in Ennis. Actually both of my kids, and my two Grand children got to come up and we had Christmas at our apartment. We had bought the very last “real” Christmas tree in town, and it was scrawny but we decorated it, and it turned out beautiful.

We spent a year there, and in about August 2006, I got word I would need to make a trip to Seattle for my “hearing” for my disability. We flew back, not knowing what to expect, and when we left I did not know for sure if I had “won” my case or not. It might be a month before the judge sent me the letter. But, I could tell from his comments in the hearing that he probably would give me a favorable outcome. Thus about 5 weeks later, I got my letter saying I did get my full disability and they paid me retroactively back from 2004, so I got a fairly good sized check. We looked for a house, small, but something we could work on, yet not too much work, and thus we found our house in December 2006, and got to move in after much DIY renovations, paint, redoing floors, and so forth, at the end of January 2007.

My disability then meant I had Medicare. I took a Medicare Advantage Plan, and then the real fun began. I had 8 surgeries in  2007 alone. Two total knee replacements, a shoulder replacement, wrist surgery, bladder surgery, my other shoulder had been scoped, and my hips injected a couple of times. My left elbow had surgery, and the right one was giving me issues, but I was fortunate enough that my right elbow and so far both hips have been able to stay together enough that the corticosteroid injections have kept me from having surgery.

In 2009, I went to a new PCP (Family doctor) that after a couple of months of seeing me, did a great deal of blood work. I had even mentioned Lupus, RA, or some other type of autoimmune disorder. He thought so also, thus the blood work came back showing I was positive for probably Lupus, RA, and later confirmed I had Sjogren’s and Raynauds.

After those diagnosis, things went nuts from there. Rheumatologists, several that really were not specializing in my type of issues. The pain had already sent me to a pain doctor, who was treating me for the chronic pain, migraines and all of the pain that went along with the AI illnesses. In 2010, he made the decision I needed an “internal pain pump” to try and get my pain more under control. So, October 2010 I underwent yet another surgery, having it put in.

All of that and more are why my heart breaks when I watch someone on Television skiing down a slope full of white powdery snow. Or, when I don’t feel well enough to go out to the store, or to even sit here and type. The brain fog causes me all kind of issues, from having to make list after list …. Even writing this, I did not recall that I had already posted a portion of it on my blog….
                                                                                              

PLACES I FOLLOW IN MY TWITTER - "Twitter" Hashtags...

As our "methods" of finding information online, or passing information around online continue to evolve, it is sometimes almost impossible to keep up with what everything means... we now have "twitter", and also "hashtags", we have Facebook groups, pages... we have Pinterest, blogs, Linkedin, we can "follow" some page, group, non-profit, we can be volunteers, Advocates, Activists, Ambassadors, we can be the ones ill with chronic pain, chronic illnesses, and the thousands of online sites you can get to for information about everything from doctors, medications, Pharmaceutical Companies, we can find kin folks, friends, classmates, ancestors, family trees, online books, online instructions... we can order online & get things in email, or by "snail mail", or pay bills online and have it in "real time" post to our accounts.

Our "daily" online world changes what seems like every moment. If something happens in a country thousands of miles away, we can know it in an instant. We can save hundreds of thousands of lives in knowing about large storms, violent eruptions, medical history in the making, watch surgeries online, watch directions of how to online, see our friends and family online, talk to everyone online.





I find I have a difficult time keeping up with exactly what some of our newest "ideas" mean. About the time I "almost" figured out Twitter, and hashtags, then this new "hashtags" main came out, and I am trying to figure out the proper way to use them. It seems they can be an "instant link" to every "search term", site, Facebook page, everyone on Twitter... technology in the making when you breathe in and out, something new has happened. So, I am "listing" some hashtags that you might find useful in a general sense of your searching for different things.

I will add to this list as I go along. In fact I may put this into a different "page" so it will be on top and available for you....

           
#AARDA

#Chronicpain

#sjogrens

#partD

#RA

WEGO Health Awards Annual Event!!! Please go by and "Endorse" me!

Things have been hectic with everything going on from the holidays, to my own issues with going for check ups, getting my pain pump refilled, getting Jim to a decent, reputable pain doctor (MINE)... and hopefully getting him the medications he needs in order to be able to get up and function without so much horrid pain.

  https://awards.wegohealth.com/nominees/1998

Jim's pain of course, like mine and many others is a complicated situation. After the car accident, he has lots of damage to nerves, to the spinal cord, to muscles, and so forth. So, it takes a combination of medications, not just the "standard" pain meds, to help him. Things like Baclofen, Zanaflex, Gabapentin, are three of the others he needs in order to get the pain of nerve damage, muscle issues like spasticity, under control. Then some regular pain medication for other pain. So, going to the specialist enabled him to get ALL of the meds needed, rather than just "pain meds".

I am still reeling also from the ridiculously stupid incident in Corsicana that I would NOT TAKE my dog to .... the so-called "Oral Surgeon", more like a money hungry greedy, jack ass, that practically ran out the back door, when he heard the lady in the front asking me for MONEY!!! It was "supposed" to be a "free consultation", or at the very least, NO other costs of Xrays. Oh hell no, of course he had to do his OWN freaking Xray, in which my dentist had just done not 3 weeks ago to show the HOLE between my sinus cavity (Maxillary Sinus Cavity) and my mouth. As I've said that was caused due to a very difficult root in an upper molar that was so close to the "boney part" between the mouth and sinus cavity that it actually pulled a hole in between them. It appears in my mouth to be only about like the thickness of a small toothpick. But in the X-ray, it does show a larger "communication" as they call it in technical terms, maybe a 1/2 inch or possibly longer between them. Well, I went down there prepared to set up a "more aggressive plan to fix it" which would entail probably bone implant. I have already had it "sewn" closed initially, then my own dentist did a less invasive procedure that I wished I would have asked for "gas" like I had been with the rest. He had to literally "cut" a flap of my gum and try and put it over the tiny hole, then suture that into place. Hopes were it would "seal" itself over and we would be done... but IT IS COMPLICATED RHIA!!! So "Rhia's Law" NOThING is "simple" with me... always has to be complicated as hell and stubborn, and cost more... and. and, and .... and ... and then more... but the jackass down there basically as far as I am concerned ripped me off of 130.00 and DID NOTHING for me... in fact he was even "wishy washy" ABOUT ME having it "fixed"!!!! How stupid is that, plus he wanted to do the "same thing" that had already been tried and failed... and charge me $2,400.00!!!!!!!... YES Two Thousand Four Hundred Dollars and was going to do it under a "local" and not even gas!!! He is nuts. I watched on U-Tube what "needs" to be done... and I NEED TO BE KNOCKED OUT to do it!!!! It is insanity now days to get anyone to do their damned job as far as physicians, pharmacists etc...

Yesterday, I went to 3 DIFFERENT PHARMACIES, to get Jim's meds filled... and used to if they did not have it, they could order and have it the next day... NOT ANY MORE.... now like WG's told me they only ORDER MEDICATIONS ON THE WEEKEND!!! Excuse me???? No wonder they never have anything in stock... that is crazy!!! Hell not all that long ago, I could go into my pharmacy in Corsicana, my Pharmacist, would GO OUT OF HIS WAY, AND even call around to other pharmacies if need be to get my meds if they did not have them at the moment!!! And this was not a "small" pharmacy, but it was actually Wal-Marts pharmacy in Corsicana!!! He was amazing.

RARELY DID THEY NOT HAVE MY MEDS... and if they did. 99% of the time, they got them that day, if not the next for sure......

Well, I finally had to just get up, get a few things done around the house, that I REALLY DID NOT feel like doing, but I did them anyway... and now I think I may sit down and watch a movie with my puppies....

I am seriously considering writing yet a 4th book. This one will be "fun" for myself and everyone who loves the "colloquialisms" of different states, even different places within a state... accents, the "sayings" we have heard from our child hoo years and so forth. My husband has been on me to actually put ALL that I have and say all the time together and publish a book of them. Thus, I've been putting down many, many of the sayings as I've went through the years. Now, I am trying to think of a really great name for the book!!!! Then I can "register" the title, start on the cover of it, and then it gives me something very "tangible" I can work with. Wish me luck as a venture on out yet into another realm of my life... many good times wrapped around lots of those "sayings" I've heard since I was a young child... this time I think Dad will be (would have been) proud... :):) It will be dedicated to him, because he is the one that filled my head full of them for so many years... :):) More to come..... 

It is Official - I am a "Platinum Ambassador" for the Arthritis Foundation!!!

I was just totally on Cloud Nine yesterday afternoon! I received an email from someone I've became quite good friends with over the last about 9 months or so. She emailed to tell me that I had qualified for the "Platinum" Ambassador Activist, which is an elite group of Advocates!

I had tried to spend lots of time this past nine months or so, putting myself into the throws of Advocacy, Activism, Ambassadorship, .... volunteering to keep me mine as clear of "brain fog" as possible! Plus I also used my "voice" and Advocacy work to help me not think about the horrid event on March 26th 2014.

It has been a very long way to get this far from Jim's wreck, and have some type of "normalcy" to our lives. We still have a great deal more to go, and our "normal" will never be what we considered a "normal day" again. But, through the pain, tears, the smiles, and frowns, and all that has been in between. Each day has been one step, one moment, one hour, one day, at a time.

Yet, we are blessed that as bad as it really is, it could have been much worse. He can walk, with a cane. Not for very long right now. But, as time goes by, we do have hope still that much of the pain, the stiffness, the ability to be "whole" again.

So, through the "window" pane of activism, and my role of becoming an Ambassador for the Arthritis Foundation (now to find out I made Platinum) feels like an honored victory for myself, and my family.

My Mom and Jim are so very proud of me. They have witnessed all I've done to be as an Advocacy and Voice!

So, that means in March, I get to go back to Washington D.C.!!!!! The Annual Summit will be there again next March, and I'll have my "warm, fuzzy, walking boots ready! Last year I sure wished I had taken them, so this time they WILL BE with me!!!

So, that gives me another realm of my "voice" I will work on throughout 2015! There are lots of new things in store from the Arthritis Foundation, and I am elated to be a part of such a worthy organization.


I will keep you informed of course as time goes on. My blog will be a huge part of my voice, and now I have something else to put into my book, that I hope to finish up by the end of 2015!

http://www.arthritisfoundation.org

Join Us at the Annual "Jingle Bell Run" in Ft. Worth TX at Burnett Park TODAY!!!!!

I so wished I could go. I have been just in such horrid pain with I guess a very bad Lupus/RA flare, and Jim is not feeling the very best, so as much as I want to be there in person, I will be there in heart and spirit!!! 

I will keep everyone updated as everything takes place. It will be a fun time for everyone, so please have a great day and you can see it all at the "Jingle Bell Run".

by the way, see the website for ALL of the locations of the run across the nation also!!!!!!   http://www.arthritis.org/get-involved/jingle-bell-run-walk/

http://fortworthjinglebellrun.kintera.org/faf/home/default.asp?ievent=1112128

There for Me...

As any writer knows, sometimes things don't play in your mind as maybe they should be. And where inspiration comes only a true writer can see. A silly TV show that went "viral" for many seasons... and for years I never saw any of the episodes. But, this evening as I watched one of the reruns. Something spoke so deeply to me, that I could not even lay down and sleep. I had to get up and put it down on "paper"... Now some may "get the wrong impression" when they read this... it has NOTHING to do with my life now or anyone in my life now. But, it hits me from way back when... I thought fairy tales never came to an end.... So this is a "song" I heard in my head tonight... and I am compelled to post it here. I started not to, and just put it up on my blog... and it will definitely be there also... but for now, here it is:


There for Me...

When you needed me, I was there for you…
And you pleaded for me, cause you always knew…
When you would call, I could hear your words of sound…
Yet, when I called out, you were no where to be found.

We lit the sky up with love in the words…
Sounds came crashing down, as I walked towards…
To find out I was there for you…
Yet, where you were I never knew.

We took that plunge when you were so young…
Singing the songs that should never have been sung…
You turned around and saw me, and even then I knew…
You would cling to me, yet I could never cling to you.

Many nights I seemed to fly so high…
Above the moon and Earth, into to another sky…
As I turned to see the stars within your eyes…
All I could see was all those sad goodbyes…

When you needed me, I was there for you…
Tumbling down the mountain side, I bled for two…
Me and you should have never have been…
And now I feel the pain, it’s as bad as it was, way back then.


Then the darkness fell all around…
The chaotic world, yet not a single sound…
Of those words you said back then…
Did you mean them, when you said them way back when.

I came to you wanting to journey through space and time…
Make my life out, just like Cinderella in a nursery rhyme…
Yet I turned around and then I knew…
That was way back then, but you never had a clue…

The years have flown by and in those many nights of tears…
I cried out to you, yet you never feared…
You thought you and I would always be…
And even now you still try to cling to me.

When you needed me, I was there for you…
And you pleaded for me, cause you always knew.
When you would call, I could hear your words so dear…
And in those words it took me many years to fear…

That for me, never you meant to be…
What you promised, was to always cling to me…
And now in my lonely nights I silently pray…
Never tried to hate you, but I found no other way.

To get over you for so many years…
Through painful nights and all too many tears…
I fell from my own mountain top, and finally seen the end.
Of what I thought, was not even there back then.


When I needed you, you were never there for me…
I could not see the forest, for you stood as the tallest tree..
Blocking this vision, for too many years…
So what I cling to now, is what I know I fear.


Rhia Steele 12/2/2014

Fighting "Monstritis": Tucker Beau, 6, and his loved ones on their juven...