Sunday WEGO Blog Challenge - November 20th 2016 - 20th BLOG POST! What has been the Highlight of my Actvist Journey So far?

Sunday WEGO Blog Challenge - November 20th 2016 - 20th BLOG POST!  What has been the Highlight of my Activist Journey So far?

Out of ALL the things I've learned and gotten to do that were highlights in my activism so far, going to the Arthritis Summit in 2014, to do my dream (Stand on the White House Steps and tell my Story to All of CONGRESS) I must say has so far been the real moment that I felt that I WAS MAKING a difference!

Being a writer, since the age of 13 years old, I had two goals, one to have a "book published". I told my kids that if I never got to "see" that happen they had to promise me to try and get at least ONE published. Thus in 2012/13 that goal came through twice! With the self-publishing and I used Amazon; although still a great deal of work, if you want to be frugal yet get your book(s) out there, that was my way to go,

So, I had many poems, short prose, and had began on my story several times. I wanted to tell my journey throughout the chronic illnesses and pain, but also some other very personal terrible things I lived through. I am a huge advocate for Women's Rights, and not being subjected to abuse, rape and such. A piece of the book will include that, plus my journey that began in TX, took me around the Western part of the Nation, to live in Lancaster CA for a short while. Then I came back, and went through an entire series of events; honestly a role of changes, that I am proud I got to go through. Without those, I am not sure I would have survived and been here this morning to be blogging this.

After several years I literally made a circle, and came back to my hometown. That was the one thing, I had hoped I would not have to do, come and stay permanently here. It held many lousy memories, and times that I did not want to face again. I had "been there, done that" and was so hoping all of that was behind me. I can tell you, life just like a wedding band, or the moon, is always a circle. Many of us do exactly what I did,

So, I lived to see two books published, and although they are not "chart toppers" I did get to live that dream.

I desperately needed something in my life, once again that I felt would truly help to change things for others, make a difference, and since I always wanted to be in the medical field, the entire "medical research", being a voice, advocate, activist, and Ambassador, in the realms of what I felt may do just that.

Long before I really "got extremely chronically ill" (I have lived with severe Migraines and joint problems since I was 17 years old), I kind of viewed an "activist" as someone standing on a sidewalk, or on the steps of some place, shouting, screaming, making waves, and that was how you tried to get your point across.

As I became aware of my ongoing health issues, I began to view the act of being an Advocate could be anything but "picketing", and there was non-profits, individuals that especially due to Social Media and the Internet who were making changes in so many ways, but especially when it came to Chronic Pain, Chronic Health Problems, from Autoimmune Illnesses, to Heart Attacks, to Degenerative Joint diseases, and MANY others, such as Fibromyalgia.

I began asking questions, researching some of the non-profits, looking for groups on Facebook, and saw that MANY of these types of opportunities are out there, and in TOO MANY when you are someone who would like to DO IT ALL!

I found out more about the Arthritis Foundation, through Tiffany Westrich-Robertson who had started her own "non-profit" more specifically for "Autoimmune Arthritis Diseases" such as RA, Sjogren's, at the (IFAA) - The International Foundation for Autoimmune Arthritis". She really began, along with the other advocates there taught me so much about getting into the organizations I felt were the "best fit" for what I wanted to try and accomplish. Thus the Arthritis Foundation (plus I still do Activism) for several other places.

Shortly, right after I attended my 1st "Ambassador Meeting" via the Internet and Phone, I found out that there was a possibility I COULD GO TO TELL CONGRESS MY STORY! Well, those that represented my District. The one person that did that happened to have been from my own home town, he had worked for the same company long years ago, that my Dad, Mom and I had worked for and I "knew" him, and some of his staff. In fact he has an office right here in my hometown.

So, I applied for a "Travel Grant" to go to Washington DC on March 24th, 2014. It was already probably kind of "past due" to even apply, but I did anyway. Tears of joy streamed down my face, when within a couple of weeks, I received notice I had been GRANTED A TRAVEL AWARD, for room, round trip flight, training, and such. I was almost shouting at my neighbors when I found out, telling everyone I could about getting the grant. My MOM was SO PROUD!!! SHE always SUPPORTED ME, AND BRAGGED ABOUT ME, to everyone! Mom was my "greatest fan", from my writing, to my advocacy work, to everything else I ever tried to do that was worth doing.

So, on March 24th, I flew to DC, and got to meet with Representative Joe Barton, tell my story, along with some other incredible people I met there. I cannot say enough about not only all of the Ambassadors, but the entire STAFF, are the most caring people. Laura Keivel was also such an inspiration to me from the AF, and she continues to be there for me at times,

On my last day of the Summit, I got a phone call (emergent) but at the time I did not hear my phone ringing. I was waiting to be picked up outside the Hotel, by my "Mother In Law" whom I had never met, (her son and I had been together over 10 years), plus we were going to stay, he was flying in, so we could spend time with her, and he could show me Washington DC!

Tragically, that phone call, came in about the same time my Mother in Law, walked into the Lobby to find me. It was from the Emergency Critical Care Unit in Dallas TX at Baylor Hospital, telling me my husband was in an extremely horrible car accident on the way to the airport in Dallas, to fly out to meet me! I dropped to the floor, and of course no one knew at that moment what was happening. But, a gentleman there that helped me get back to Dallas within about 6 to 8 hours, and I was at Baylor in ICU, my husband at the time, other than many other injuries, had a "broken back" and was headed for major surgery.

I shall end this piece here, but little did I know after March 26th, 2014, just how much more my life would change forevermore. Little did I know I would lose my Mom's sister, my Mom this past June, 2016 to a horrid Lewy Bodies Dementia, and that I became more ill, lost ALL OF MY TEETH TO SJOGREN'S, and the story just continues to go on. My husband went back to Seattle after mending a year here, for reasons, I feel mainly guilt, although it was NOT HIS FAULT! An 18-wheel tractor trailer literally ran over him,  and yes there is much more to that story also. Then my Pug, Tazzy, who was a Christmas Present in 2004 in Seattle, passed away within 24 hours of getting very ill. Thus "loss: had been a large portion of my life, loss of my own health, my own ways, my husband, my Dad in 2005, my Aunt and then my Uncle, and shortly thereafter my Mom.

So, I realize due to the nature of emotions tied into that fateful March 24th-March 26th, 2014, have been a mixture and blend of the good, the great, the bad, and just the plain horrid.

YET; although what happened in March 2014 WAS such a horror, being able to go to Congress, tell my story, and KNOW I HELP TO MAKE A DIFFERENCE, has been the "highlight" of my activism so far.....

#HAWMC

 - #HAWMC on Twitter

 

 

 

(by the Way WEGO HEALTH, all of you are also an inspiration to me also) 

Setting The New Year Tone as I Deal With RA, Lupus, Sjogren's, Trying to Complete a 3rd book, Life, Family and so much more...

Every Year so many of us have a "List to Live By"... for the New Year. Some call it a list of "resolutions", "Changes", a new way, a different attitude, motivation for making things different, making what you want in life happen... Whatever you "call" it... we try to set the "tone" for our New Year.

Whether "chronically ill" or not... each of us want things to "change". Now, many of us may be completely satisfied with our life "as is"... but human nature gives us this innate intuition to never stand stagnant, to always want to evolve, to make our mark on the world, or at least our own home and community. As a whole, although when you hear the news it does not sound like it, I still feel "human nature" basically wants to "do well"... to help, to be that change maker...

As I have prodded through these past 7, 8, 9 or more years of chronic illness and chronic pain, I've noticed that it seems for the majority of us that are chronically ill, whether it is an Autoimmune Illness, Heart Disease, Cancer, or any number of diseases, syndromes and/or illnesses "we" as a whole tend to try even harder to "change" what that disease is doing not just to "our bodies and lives" but to all the others we see on a daily basis suffering from the very same illnesses. We tend to be more a part of the "change makers", whether that means a local community awareness, or a National Campaign and being an "Ambassador", Volunteer, Activist, a "voice" such as helping so many of our non-profits, such as The Arthritis Foundation, The Cancer Society, The American Heart Association, Lupus Foundation, The Pain Foundation, and the many, many, charities and organizations that "go to bat" to fight not only locally, in our states, but nationally to make awareness known within our Governmental Bodies, to get finances for more research, the race for a cure, for answers as to "why" some of us suffer so badly from such horrid illnesses, what causes them, how to treat them without destroying a patients life, and how to give people back their quality of daily living!

So, when our chronic illness and/or oain issues bring us to the place we no longer can "work" our jobs, or do many things we once could do, we find ourselves seeking a way to help STOP these diseases from ruining more lives in the future. With the technology, and how we have evolved globally, with a few key strokes, we can contact our state, our county, our city, and our National Government Officials. We can provide all types of very usual assistance without leaving our homes to "make that difference" we so want to make in life. I know some people that probably spend more hours a day now as a volunteer, activist, etc... than they did actually working a 9 to 5 job that nearly killed them... but we can "take off" for a week if we are ill, or work an hour a day, or a few hours a month.... however much "we" want to put into assisting these foundations, is so appreciated. And many of us, like myself have been even honored and rewarded by being sent to Washington DC to stand on Capitol Hill and tell our stories! So, activism, can be and is such a rewarding part of a chronically ill person's life. We feel we are "contributing" even though we may not be able to work hours a day, or leave our homes... we "make a difference"... and not even spend a penny... but give of ourselves and our time... which is definitely valuable... sometimes more than money... the value of "our time"....

I had been looking on Twitter a bit ago, and there was a great idea that I decided to not only to share, but to do. Take an empty jar, and each "good thing" that happens within the New Year, jot it down on a small piece of paper and put it in the jar. Then in the start of the next New Year, get those out and read them. As I said, all too often we "recall" all of the crappy, the bad stuff, that happens within a years time, yet we don't remember those "good moments" and maybe they are "small" but memorable. Then see just how many have filled that jar from that year before. I have already been able to write down 3 or 4 things and put in the jar, and this is the middle of January! Maybe I will need 2 jars to "hold" onto those good moments... those moments that help to make the bad ones seem not so bad.

So, the "title" of this post, is a bit deceiving in some ways. I gave the impression this was going to me more about my own "revelations" for the New Year, and the "tone" of how I "want" my year to be for 2016. I've never been one to set expectations to high, but I do try to give myself "goals" to achieve... yet I have also had to learn that when you have illnesses such as Lupus, RA, Sjogren's.... and so forth... those things you "want to achieve" may get put on the back burner, for those times you are in a "flare", or you are having surgery, or sick, or going to the doctors... there can be all kinds of things that interfere with those "good intentions"... and it is not that you may not achieve them... just not in the time frame you thought you would. I had wanted to be a published author for 20 years plus, and then was with two books within less than a year between them! My 3rd book, has been sitting here mainly completed on my computer, but needing to be put in some type of order now for gosh 3, 4 or more years. But, life and illness... have had to come first... thus the book WILL GET PUBLISHED, but I no longer "pressure" myself... Due to things beyond my control over the last almost 3 years, I began getting it together, then had to leave it... now it will take me weeks to even get back into where I am, what I have in it, and how I want to continue... and I will get there... but I have to feel well enough "physically" to be able to sit at the computer several hours at a time, hopefully with little interruption for weeks, at least 2 or 3... or I will never be able to "delve" into where I am, and where I want to go forward.... so I may not be able to do as much as I want on it, until I have the cervical neck surgery... I can't sit very long at the computer typing right now because of that disc... when it presses down on the nerves, and I have pain in my shoulders and down my arms into my thumbs... it makes it very difficult to "find my voice" to write...

It is different with my blog... I can write a bit, get up, do a few things, and come back to "finish" the post...

But, the "tone" for my 2016 is to try my best to get as far on the 3rd book as I can to prepare for it to be published. I also need to get myself back into "physical shape" and I mean back to walking when it warms up, taking the dogs out walking, and getting out of the house... but I also face at least the one surgery... and maybe two this year... my lower lumbar and sacral spine gives me hell when I try and sit for very long also... and after Friday's ordeal of driving and doctors in Dallas all day long, I have suffered with a great deal of back and side pain... hell I've wondered if I have another kidney stone, the pain has been so bad off and on...

So, the "tone" again is to do as much as I can personally to my home, bless it's heart it needs so much work, and myself... and try to "enjoy" each day whether ill on the sofa, sitting here at the computer writing, or online...walking my pups... walking myself... and hopefully spending several times this year for a day or overnight stay at Winstar! Gosh how I miss that Casino! I walk in and the world melts away, at least for that time you are there...

So, take time to "set your tone" for 2016.... make yourself a "good moments" jar... and in 2017 (when I get to trade in my Prius for a New Model) see how many of those truly make you smile.....

What "Out of the Mouths of Babes" Taught Me this Morning about Lupus and Advocacy!!!!

I have to post this in regard to ALL of us EFFECTED by LUPUS!!! My daughter called a little while ago, as most know she lives about 8 hours away around the Corpus Christ area, and she was talking about Selena Gomez having Lupus. I told her I had just began to read that, and she said that the woman she works with, has a son who is 24 years old, and he was diagnosed with Lupus... recently he almost died due to it almost shutting down his kidneys.. and then "out of the mouths of babes comes" This is not a "rare" disease, it effects so many and there needs to be much more awareness about it!!!! As I almost fainted because of course here I am her Mother who has it among other A illnesses, and of course I am a huge Advocate for Lupus and RA...Sjogren's and so forth. So, the "point" here it dawned on me, that first of all of course she knows that I have Lupus, but her thoughts have been it is a "rare" disease, and she knows that I help to spread awareness and then it dawned on me - 



UNTIL WE make LUPUS a COMMON HOUSEHOLD TERM like CANCER - never will all of our advocacy be enough.. even those out there educated about it, with a family member with it, like a Mother, and all she knows about me, it still to her seems to be a "rare" issue - then when she said, but Mom is is NOT - the news always makes it sound like some "rare" disease but it is far from being rare... it touches MANY people's lives daily and then she said and they give "chemotherapy" medications for it - that Selena Gomez is on a much smaller dose, but it is a "cancer" drug that is used"- now my kids know that I am on medication and neither of them live close enough to "see me" when I am ill, or see what the doctors say, and so on 0 but of all of the advocacy work I do- I "missed the boat" in telling my own daughter that I am TOO on chemotherapy type medication just also in a much smaller dose.... I felt as if in my own way, to those closest to me, I have FAILED miserably in my "activism" and voice for these diseases..... again that is when it dawned on me until we QUIT having people think of these diseases as "rare" and they become as "well-known" as cancer, heart disease, diabetes etc.... then we shall never HAVE ENOUGH AWARENESS out there.... I told her that kids as young as 9 MONTHS old can be diagnosed with JRA.... and I did not have time to explain more about how that is found, but it surely hit me square in the face, that our activism, advocacy, and awareness need to be MUCH, MUCH more...Lupus as I said, needs to be a "household" word......


So, I now am even MORE AWARE that we need MORE AWARENESS! All too often these types of illnesses are considered "rare" yet as we know now, daily, we hear of many, many more cases, and people that have it Lupus, RA, Sjogren's and such for YEARS and they do not get diagnosed until after they are much more ill that they should have to be!


This to me is just NOT ACCEPTABLE and it should NOT BE acceptable to any of us.... whether you have Lupus and so forth, or a family member with it or a friend, and so on, awareness is they key to finding a cure, a reason for, how to STOP LUPUS before it attacks someone so young, that their kidneys fail..... Her comments to me certainly gave me chills down my back, to think I was diagnosed about 2009 or so with Lupus, RA, etc... and even though I have made it very well aware to both my kids and my Mom and other relatives, friends and such... and even put my heart and soul into all of the Advocacy I can, it is NOT ENOUGH1 STANDING on those White House Steps in 2014, and telling CONGRESS having these disease is NOT ACCEPTABLE and yet each day we grow it seems almost further from education people about this not being some very rare something, but it is a part of MANY and THEIR EVERYDAY LIFE!!!!!


I have to keep DIGGING away and trying to do all I can to spread information about Autoimmune illnesses and just how deadly they can be.....

WE must ALL do so!

 

Awesome News From the AF and on Capitol Hil in Californial - about "steo-Therapy" - A "step" in the right direction for California!

http://blog.arthritis.org/advocacy/ab-374-step-therapy-arthritis/

Chipping away at the issues that keep us from our medications due to "step therapy", Pricing and much more!!! This is certainly a Victory!

When it finally "dawns on you" why you seem so totally living in "chaos" even above the drama of Chronic Pain and Chronic Illnesses

I have spent moments, hours, days, weeks, even I am sure YEARS trying to figure out exactly "why" my life seems to be in a "chaotic" whirlwind almost daily.

Yes, having autoimmune and/or any type of "chronic illnesses" along with "chronic pain" puts your life in turmoil more often it seems than not.


Yet, that still does not explain why, with only 2 adults, 2 pups, in a tiny two bedroom, barely over a 1,000 sq foot home, and a back and front lawn that are definitely average in size, along with a "back forty" a small bit of land that up until this fall had the neighbors sheep and goats on it, so we never had to be concerned on it. Why it seems that EVERY DAY of my life I look around, and I am constantly dusting, vacuuming, mopping, sweeping, picking up things, doing laundry, taking out trash, scrubbing tub and toilet. Yet both inside and out, I feel like it appears that this house is dirty, and it is just falling down around me every day a bit more.

When I bought it, I put a LOT of money into it, there was still SO MUCH "restoration" that needed to be done, yet the money ran out. So, even though there was at least 10,000.00 or more put into it, for painting, redoing floors, carpets, furniture, redoing plumbing, a lot of the electrical rewiring, lots of new plumbing, a brand new shower/tub, a new toliet, taking in a wall, knocking one out to have a bit of closet space and to make the bathroom larger. Yet, when it came to redoing flooring in the bath, kitchen, doing the finishing work i the laundry room, a carport had to be put up, and now the list is still endless.

We had some storm windows put in, and had a great deal of insulation put in the walls and attic. Yet, one bedroom did not get the new windows, and the windows are so old, the glass brittle, they lack most of the correct Pins and "glazing" that should be around them. That entire room has really never had been redone, so it needs paint, the windows repaired, a new ceiling fan, carpeting laid, and along with now the outside of the house needs a complete paint job, and some rotten board repaired.

So, I see one of my "mistakes" was not considering just how much MORE I needed in finances to really PUT this home back to its original state. I lacked about 5,000.00 back then, and now with other things going on, it is more like 10,000.00  more that needs to be put in... a new roof, the ceiling in many of the rooms really need to be either repainted or redone. The floors in the kitchen, bath and laundry room laid in. The walls that are in the bath need to be some still put in, and/or "mudded" and textured for paint. So, I should have known that without ALL of those funds, trying to "make" this house "look" neat and clean is very difficult, if you still have "portions" that are not yet up.

So, I look around, and even though SO MUCH work was done, and ALL for the most part myself and my husband did it all. From redoing hardwood flooring to painting, texturing, putting in a larger shower/tub, all of the plumbing, still the house no matter HOW MUCH I clean it, to me it looks dirty. I can dust, mop,sweep, do laundry, and almost every day it could be done again. Nothing ever looks "clean". Even though I KNOW it is, when it is "old" stained, and needs replacing, it just never appears to be clean.

Of course, then there were a stove/oven, the refrigerator, the washer and dryer, bed, furniture for the living room, and the list of all of those things, from the "renovation" work, to all of the other items needed to run a home, lawn mower, weedeater, tools... we had to buy a huge array of tools, saws, screwdrivers, wrenches, tree trimmers, you name it, of course if you do lawn work, and work around your home, you know just how many tools that can take. Blinds, curtains, sheets, towels... yes, we had "some" of these after being together for a pretty good length of time, but even those were beginning to show their own signs of "wear and tear".

So, then come along, and I became "chronically ill" - with autoimmune illnesses, that led into many surgeries, doctors, tests, you name it, I went through it. It seemed endless. Then, many of the things I could do, no longer was I able to do, when it came to the DIY around the house. I had both knees replaced, a shoulder replaced, surgeries on other joints, my neck had to have surgery, then I had "double hernia" surgery, not that long ago... thus me being able to even, "mow", do things in the yard as I once did, many things in the house, either I cannot do them anymore, or it takes me 5 TIMES as long as it used to.

My energy level is constantly up and down. The fatigue at times is just horrid. The brain fog, now has "captured" my mind so much, that even trying to write some days seems like it might be impossible.

So, now after being in this home, that we loved, we wanted, we wanted something we could "FIX UP" ourselves... yet, now it needs a new roof, we need gravel under the carport, windows finished in that back room, carpet laid in there, the house needs a painting all over... and again the list is endless .... and again it seems no matter how much I clean, how much I sweep, it seems nothing is ever "finished" or clean.

Texas is known for its "dust" that seems to come from no where. But, there is a constant battle with a grey dust that seems to settle daily on everything. As I said in the beginning, it just seems endless.\

What makes it even worse, I would much rather be here, at the computer, writing my book, so I can get it published. Yet, that always seems to be the "last" thing on the bottom of an endless to do list. So, by the time I reach down and pull up more things to be done, I am too worn out, physically, mentally and emotionally to really put myself into the writing as I want to.

So, now I sit here, daily, wanting so badly for things to just STOP for a few days, stay clean, not have endless errands to run, or things to do like shopping, mail, laundry, cooking, mopping, paying bills... all of that could just be put on hold for a few weeks so I can have some quality time to write...

Right now, it is almost 1 PM. I am on "empty" as far as energy, with sheets to be put back on the bed, and other clothes to be hung up or put away. I need a shower, and I'm drenched in sweat from the humidity. I have already swept, done laundry, mopped, dusted, including under the bed, behind it, and so on, it id trash day and after a holiday and a massive amount of bad weather I had 3 can FULL of not just trash, but limbs, and 4 other huge limbs too large to cut up. In between, I've done some things on line, but I am worn out from these past few weeks of energy.... and it seems there is never a break. I began trying to work on the inside windows in the back spare room. Well, that is going to take time to sand down, fill in so many places with wood putty and then get them ready to paint. After that, they have to be fixed from the outside with the pins and glazing which is very time consuming. I have a total of 5 windows, all of which need that work on them. I actually still have a broken windows from the hail storm last year. I had hail break a window when I was ill with pneumonia, so it is taped up and sealed up the best I can until I can get it measured and have someone to help me put it in. I can, but I need another person to hold it in place, as I can't hold it and pin it at the same time..


So, hind sight is "20/20".... there are so many things I look back on now, and so wished I would have done differently. I can't tell it all here in one post, but from some of my "relationships", to homes, to where I am living in the nation, to health problems, jobs... and TIME to write my book! That is probably THE MOST important thing to me, is to FINISH THAT BOOK AND GET IT PUBLISHED! But, how does ONE person do it all? And then have enough "time and energy" to feel like doing it all, and then spending time on my book daily.


By the time I've been up since sometimes 5AM, and 4 PM rolls around, I am totally exhausted. I wished I had an easy answer... I wished I had any answer.....

The Arthritis Foundation Being an Ambassador & Just how incredible of a Foundation it is.

I've talked a great deal here on my blog, as well as on Facebook, in emails to friends and family, along with spreading the word here in my hometown, and even in our local newspaper, I've had a couple of articles published.

I know at times when we think "non-profit", charity organization, or other ways they are often referred to, it gives the idea that they "collect money through donations" and use those to help others, possibly for some research, and so forth.

Actually, that is not all that the Arthritis Foundation does at all. They are an incredible Foundation, created by some fantastic people, that have changed the face of arthritis throughout the world. They bring "patients" and "caretakers", even our youngest of patients the kids with Juvenile Rheumatoid Arthritis, and have them involved in the annual "Summit on the Hill" each March on Capitol Hill in D.C. in order to have more funds, more awareness, and more support through Caucus' and those Representatives that can help to make research, awareness, and also others types of assistance available for patients, families and caretakers.

They are a true leader when it comes to "arthritis". Whether it be Rheumatoid Arthritis, Osteoarthritis, and Juvenile RA, and/or the complications of those to a standstill. They feel that anyone that has to suffer from these horrid diseases, that can't get the medications and care they need in order to have a normal life, as being totally not acceptable in any shape or form.

They are warriors in the battle of these horrid illnesses and diseases. They have made an impact through not only the Federal Levels of government, but also in our States legislation to chance things so that "we" as patients can have affordable medications, access to the proper care, making sure that "generic" medications are virtually the same as the original name brands.

Not only do they hold the annual Summit each year and see each and every Senator/staff and/or Representatives, they have also changed things that were very wrong with insurance coverage for people with these illnesses, and helped to stop the "insurance" companies from telling the doctors what or what they cannot give to their own patients.

They have also along with the Department of Defense started a program years back, where our women and men that come out of duty home, all too often to suffer from some type of arthritis and/or autoimmune illness, have a "face and name" in that respect. There are studies about why so often a "well" soldier comes in from a stent of duty, only to realize they have been "taken down" by some type of arthritic ailment. The chances of that grows higher each year, with troops coming home to be in much more pain and suffering than to be in the wars.

The "AF" Arthritis Foundation provides dozens of opportunities for those who wish to become a "voice" by being able to become an Ambassador, help with other volunteer efforts, write letters and emails to your representatives, attend different events, such as the "Jingle Bell Run" and the latest which is the annual "Walk for Arthritis".

Over and above all of those, they also have events for those kids with Juvenile RA. They have week long camps, are also there at times to speak to the Congress, and help in some many ways when it comes to fighting for a cure for these diseases.

So, whether you are able to give a few hours of your time to help out, send out emails, hand out information to others in your community, do a local fundraiser, get the word out like this through blog postings, social media, your local government, newspapers,attend a "Town Hall Meeting", or however you can give of your time, all of those things and so much more are crucial to "solve the mysteries" of these life altering diseases.

Please go to:

http://www.arthritis.org/

                      and be a "Champion of YES!"

I will post more about my own "Ambassador" role, and in fact I was made a "Platinum Ambassador for 2014! Which is another one of those incredible honors bestowed on those that give of themselves and of their time to make a difference for "every one"!

 Below explains more in detail of just how crucial it is to be a "Champion of Yes!

 

Champion of Yes.

Our Voice Resonates Loud and Clear
All-In
We are all driven by a passion and commitment to work that goes beyond the call of duty.
Expert
We continually strengthen our longstanding track record of leadership, and apply our authority to initiatives that are escalating technological, medical and scientific advancements every day.
Bold
We are tenaciously and aggressively attacking arthritis and its effects, with a loud voice and loyal persistence that will never back down.
Ever Present
We are here for the long haul —when, where and how people need us — maintaining relevance in every field and facet that affects arthritis.
Brave
Together, in the face of darkness, we possess an optimistic outlook and winning spirit that courageously leads us.

arthritis.org

Arthritis is a thief. People with arthritis know this full well. It steals everyday joys and long- term dreams. It isolates and ostracizes.
It is painful. It induces a spirit of No.
As people close to the Arthritis Foundation, we know that it doesn’t have to be this way. We are in a unique place of authority and action, with the purpose of finding a cure, but also fighting for the everyday victories.
We Exist to Conquer Arthritis
The Arthritis Foundation is focused on finding a cure and championing the fight against arthritis with life-changing information, advocacy, science and community.
Plan for Yes
We chart the course for the arthritis community, helping families develop personalized plans for saying Yes — day after day.

 

Monday #HAWMC - WEGO Writers' Challenge! H. E. A. L.T. H. - April 27th 2015

Talk about a post to think about. So many "words" for so many illnesses, symptoms, medications and the like. So, I shall give this one a try today  - come up with an "acronym" to describe my activist journey.

"Hoping Extreme Activism Leans Towards Healing"

Hoping

Extreme

Activism

Leans 

Towards

Healing

This was is not as easy as one might think. To really use only what "letters" given or a word for example, such as this without putting any other "in between" words such as "IN' An, The, and so forth takes some thought. So, since I do at times "feel" like I want to take my own "Activism" to the "Extremes" so one day, what I have accomplished does lean towards others "healing".....


Great one WEGO!!!!!!

#HAWMC

Sharing More About My Pathway to being An Autoimmune "Voice" Activist, doing Advocacy & being An Ambassador for AI's - A Long Journey...

I am WAITING "patiently". I am supposed to get a huge "suprise" goody box from the Arthritis Foundation. Since I was not able to attend the Summit, they are sending me my "Platinum Ambassador" certificate, along with some other things from the Summit!!! Hopefully another reusable bag, so I can "advertise" plus maybe a T-Shirt smile emoticon I hope. We got them last year, so maybe that will be with some of the rest of it... I will take a picture after I get it so everyone can see what kinds of things I got.... I am still so totally bummed about not getting to go to DC I pray and pray, I will get another chance in the future! :):) I certainly hope so... being in DC for me, is the ultimate "advocacy" way to get your message across... I did last year in 2014... and even though I didn't get to go physically this past time, my heart, soul and spirit were there and I was "tweeting", blogging and posting everything I could to help spread the word!

I will have more and better pics in a bit.. my battery on my camera needs charging. But, here is a portion of the awesome box I received yesterday from The Grassroots Manager at the Arthritis Foundation!!!! Even though I did not make it to DC this year and be awarded my plaque in person, I hope next year to go one way or the other... I was so surprised and honored to receive this!

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• I am going to post a photo a bit later of ALL of my incredible things I received from the Arthritis Foundation. I was so thrilled when it came yesterday afternoon! I received my "Official Plaque" for being a 20014 "Platinum Ambassador", a new T-Shirt from the new Summit, several buttons I can wear, a "stress" ball, an awesome "reusable" bag!! This one has zipper pockets, and is lined very well in heavy plastic, with the whole logo on it from the summit. It is really awesome! I also got the brand new 2015 Ambassador "Too; lit", which is so nice. I have it downloaded onto my computer, but this one is so cool. It is in a beautiful bound booklet, with all of the "colorful" logos etc used this year for the Summit. By the way, it is "green" this year and so it my new T-Shirt! I am just so happy I received it with a beautiful note written by the "grassroots manager" who is just a real sweetheart! Laura has been almost like a "mentor" to me in so many wonderful ways. Also, last year along the way, we became "friends". I learned a great deal about her on more of a personal level and we shared things back and forth over the year about the Arthritis Foundation, but also what we had going on more about our own lives. I have truly been blessed to have her kind of take me under her wing. She was the person that helped to get me home, in the last years Summit of 2014, when Jim had the severe and very bad car accident at the last of the Summit. Her and Chris Nieto will always remain extremely special to me on many, many ways. I thank the Lord for them each day, and all of the help. compassion, support, and so much more they gave to me during that "trying time". Those times when life can all of a sudden within a breaths space throw a curve ball at you 90 MPH, & hit you right in the gut with full force. I am so indebted to both of them, plus the Arthritis Foundation; along with several others that gave me the support I needed when literally my knees buckled under the weight of way too much "life tragedy" when I least expected it. Pam Gill from the Central AF also was a huge help, and so many of the advocates, and my "family here on FB" were here day after day during those trying times when he was in the hospital for over 3 months. I never thought our lives would ever see anything
  "normal" again. As I said before, and we continue to see it, a "new normal" whatever that might be in our lives now. Denise Tekell you have also been here to listen, encourage, support, & be such a very dear, dear friend even though you are going through a very difficult time in your own life. I admire you so very much, for the strength you show, for your tenacity to find your way through such again a time when life seems to be so turned upside down for you and your family. Yet, you always have a smile on your face, no matter the amount of pain, and of fatigue, & all kinds of health issues you are dealing with, you have a kind word for us no matter what life is also pitching at you also, at a pace so fast, sometimes we find ourselves almost unable to "dodge" it. So many of you here have lifted myself and Jim up in thought, positive light and prayers. I hope EACH and everyone of you (and you know who you are) always KNOW and TRUST we are so blessed and so very grateful to have you on our fighting side of life, when it decides to deem a rapid punch when you least expect it. As I finish up "HOPEFULLY" over a YEAR of the NIGHTMARE from the Sjogren's and Losing ALL OF MY TEETH to that horrid disease, and Hope for these "mini titanium pins" will continue to help give me the added support I so desperately need in order to hold these bottom dentures in place, only to now fight another battle of a "new pain" - well it is not so "new" but much worse than it had been in my lower back, hips and legs. I am still not so sure my hips are also a part of the problem. In fact I am going to call my orthopedic surgeon and make an appointment to see him hopefully ASAP and see about having my hips injected again very soon. So, once again I face a "new frontier" in this battle of autoimmune illnesses. They can cut you down much faster than you can get up all too often... more later...
I am sure (Jim and I in fact talked about this yesterday) that at times people probably wonder If I have lost my mind.... Well, I didn't have a whole lot to lose, since over the years many things have certainly waxed and waned me in life. At one time, before I got into the "advocacy" work, and before I got "chronically ill"... my "voice" in my writing and some volunteer work was for "battered and abused" women (men kids etc)... but mainly women. Due to a couple of events that happened to me as a teenager, that I never spoke of here in this town at all, along with the living hell of an extremely abusive marriage that I stayed in WAY TOO LONG, before I finally decided to leave the entire state of TX behind... and find "peace" somewhere else.. which at first I thought was Lancaster CA, then things happened, I had to move back to TX, and again put up with the mental, emotional and physical abuse of someone who was "supposed to love me".... I had a knee operated on... and when it was well enough, I moved to Seattle WA... there of which I thought I had found my "life"... and I did in many ways. I loved my job there, and I was basically more "healthy" that I had been in years and years. Then I was struck down with yet some more abuse, that I got out of very quickly. It was not long until I began to I am sure now have the sign and symptoms of what I now know is the Lupus, RA, Sjogrens and so forth ... so due to life's changing path, just as a river can change course my life led me back here, to where I grew up... and at first I was angry... I was ANGRY AND MAD AS HELL! To be quite honest. That was the last thing I wanted to do. But I did miss my Mom and kids... thus coming back was a good thing... As far as the "abuser" he wound up in jail for a long time right after me moving back. So, that kept him out of my life... and after that, he has left me, (us) alone for the most part. Thank goodness. Back before I moved to Seattle, due to mainly "hiding" to keep from being abused (I was 40 at the time) many thought I was the one insane, on drugs, etc... no one was ever told the truth at that time... i hid it, kept it inside because I knew no one would believe me then. They would assume and did, that I was the one with "the problem". Later it all came out, and when that happened it stopped many years of gossip, pain, and others thinking I was nuts. Anyway, My advocacy, writing, poetry and so forth for many years had always been about the abuse, how to get out, how to get help, and so on... then it took a new twist after I became so chronically ill. During my "research" of what all of these "diseases" were doing to my body, I saw much that "called me into" the activist work. I wanted to TELL THE ENTIRE WORLD that I, THAT WE... all of us NEEDED ASSISTANCE.. we needed a cure, a reason why, MORE RESEARCH, more of everything, and I so wanted to be a part of that change.... thus my own illness led me to this road of being an Ambassador... and the challenge of trying to "make a difference"... but when the ordeal with Jim happened a year ago, things truly changed again... what many DO NOT SEE, are the days, times, moments, sometimes a week or two, that I DO FALL APART... I do want to just say to hell with it and quit... I don't want to make another step, see another doctor, take another pill, and at times I am truly SICK OF BEING SICK FOR ONE... AND #2 i am SICK OF ALWAYS TALKING ABOUT BEING SICK!! So, I like you try to hold onto one moment, one hour, one day, one month... and step forward sometimes to an abyss of the unknown... and allow "faith" to lead me where I need to go... Even now, I know in my heart, if I ever intend of being SERIOUS about WRITING my BOOK, I am going to have to "cut back" on some of my other advocacy work... as much as I never wanted to even think that, much less have to honestly deal with it. I am under way too much "pressure and stress"... I've always been a "yes" person... someone asks me to "help" and of course I am always willing and ready to step up to the plate and do whatever it takes... but between my own "all terrain" keeper of our domain, in other words, taking care of the WHOLE HOME, all of it... and then so much with Mom, that she honestly cannot do on her own... and my own illness, I am still way too overloaded to find the time to write, to blog, and to do the other things I feel that are also my "calling"....So, as much as I don't want to, I am going to have to back out of some of the activism for now. I can always pick it back up later.... but for now, I feel my work on my book, our home, and Mom's things... as well as my own health has to take precedence over some of the other things I have been participating in... So, as in the next couple of days, I make that decision of what to "hold onto" for now, and what to "bow out of" for now... pray I am making the right decisions and I am doing what "His" Will is, not just my own... so this is a perfect "holiday" to "roll away the stone"... and find out what is "truly meant for me to do over the next year or so"... I pray and hope for guidance, because Lord knows I may mess it up on my own.... Hugs back and much love.

The Realms of My Own Happiness #HAWMC

Check out my true happiness and happy moments below!  #HAWMC


Happiness for each and everyone in this nation, and on the planet for that matter, can vary from person to person, from day to day, and even from moment to moment under some circumstances.

It is a very interesting question that can lead to you learning a great deal about a person by what truly brings out those "giddy" feelings of being totally "in bliss"; in a complete and whole state of all being fine in your little corner of the world.

For me, of course there are different things or ideas that bring me that feeling of "glory", of wanting to smile at the world, and hold onto that "key" situation, moment, happening that brought so much joyful glee to my soul.

If I had to pick one thing, it would be having a true inner feeling of accomplishment. I mean having one of those days, weeks, and so forth that I feel I am totally finished with certain things, that I have completed the "list of tasks" that I set out to do, say for that day or week. Within that time frame, for instance, I started out with an extremely huge amount of items that really needed to be done. Whether it means, a blog post I've really wanted to write, and write well that is also received well, I've taken care of a number of things that needed to be completed at home; such as possibly baking a special cake and it turns out perfect, errands that go by quickly, allowing me to free up some time, having ALL of my household "honey do" lists (when I say lists I mean our own at home along with my Mom's usual list), and all goes as planned, no accidental trip ups, nothing else to go wrong, plans that have been made being completed, and all seems in a place of peace. That would include my own advocacy work also. It in itself gives me those feelings of happiness in the fact again, I've "conquered" the battle ahead, forged through, and completed it. I see also that others have benefited from my own ideas, and I've also been able to spread my own happiness with others. When I find that state of mind, that state of feeling whole and complete, accomplished, with major and minor items, than I am in harmony with myself. I then can justify a "day off" to the Casino with a "daughter and Mom" overnight stay. Or I can justify that I've done a great job, having freed up time to make a trip over to another town, our county seat, and shopping, possibly grabbing lunch, and finding a huge bargain on an item of clothing that I needed, or had been wanting. So, the means is the end result for me, happiness.

When I can take a look backward in a certain day, week or weeks, and watch what my jobs, errands, cooking cleaning, blogging, writing, doing my activist work all come together in a neat package that I feel I could tie a ribbon around and say,
"Wow"! I really did get so much done, had a pretty "stress less" time doing all of it, and I've given others a reason to also say, "Thank you", "Job well done", or I (we) appreciate your good attitude and accomplishment.

Although there are other things such as being able to play my drums for a short while, getting out of the house and going for a "girls night out" with Mom to the Winstar in OK, being asked to participate in something special, such as the "WEGO Activist Writer's Challenge Month", or any type of event or happening that involves me more into my activist, advocate and Ambassador dealings also gives me a sense of accomplishment, thus happiness is always the end result.

Rhia Steele
April 2nd, 2015


p.s. When I speak of accomplishment; along with the completion of a long list of things to be done, I also mean being able to not take to be concerned over my health. I am at least for a small while, free of many of the main symptoms of my illnesses have calmed and quieted down long enough for me to do those things, which brings me bliss in with all I set out to do and get done...