News To Muse - #HAWMC Wego's Writers Challenge 2015 "Breaking News"

First of all, I am sure, like myself, many of us really "want" to talk about our triumphs, yet we don't want to seem to be "gloating", "selfish", or as if we feel w are the only people in this world that are doing things "right".

The last 5 years have been up and down for me. Right off the very first, my main accomplishment, that took the entire year of 2014, was to become a "Platinum Ambassador" for the Arthritis Foundation! When I received the email telling me that, I was a bit more than elated. It did take a great deal of effort on my part to go that "extra mile" as it's called, to get to be in that "status" for the AF. Hand in hand with that, was my 2014 Washington DC Summit on the Hill visit, that I went on with the Arthritis Foundation, and I got to do ONE of the couple of things I had always dreamed of in life. That one was to "stand upon the steps of the White House" and tell my own story of the horrid nightmare of these illnesses, ranging from Rheumatoid Arthritis, osteoarthritis, JRA, and of course other autoimmune illnesses that can sometimes run hand in hand with them.

There I was, living my dream. I did get to tell my own story, several times to members of Congress and/or their legislative assistants. I did not really "stand upon the steps of the White House" to do it, but being in the Halls of Congress, both House and Senate was close enough.

I was proud that I had been able to develop a good relationship with my Federal Representative in my District, which included getting to go to a "Town Hall Meeting" last year when he was here, back home where I could also once again tell my story.

In the past 5 years, I've also got to live my first dream I guess you could say. I became a "published" author. What was even sweeter about that deal, was that I not only got one book published, but actually published 2 books, within about 6 months apart.

I am thrilled that my activist, advocate. and ambassador tasks are becoming more. In other words, rather than just contributing to my own Facebook, Twitter, Pinterest, and Blog; I've been able to do many other items of advocacy work with some very famous non-profits, which I feel in itself has been and will continue to be a remarkable force that within me, drives me to want to help others. So, those things I do that make life either less painful, less stressful, possibly develop research in the future, or even find a cure, I am thrilled that I have remained steadfast in my activism. I hope to for many years to come.

I've had several articles published about my activism, as well as about my books being published in our local newspaper. That is always something that gives me a feeling of "accomplishment". Even though there are many places I wished would pick up on my blogging and writing, if I never do, I will always and forever feel the pride that comes with having a blog that stays very up to date, and being able to see others follow me on Facebook or Twitter.

I have also had 3 different "Proclamations" dedicating an entire month to "Lupus Awareness". Two of those were actually were signed by the Governor of Texas. The other was signed by the Mayor of my town. I have those proudly framed and on my wall around my desk.

I've survived having ALL of my teeth pulled because of the Sjogren's literally rotting them from the inside out within less than a year. So, it took almost a year to the day that I spent several occasions in the dentist chair for hours, getting the rest pulled, then having dentures put in. Due to the Sjogren's then the last portion that actually just took place, was to have "mini implanted titanium pins" put into my bottom jaw, in order to hold my bottom dentures in place. Between my own bone structure, and the lack of saliva because of the Sjogren's, I spent about 4 months trying to keep those bottom ones from "floating" around anywhere they pleased. I just finished the process up on March 31st, a few days ago. Believe me, as many things in life can be nerve racking, having that many teeth have to be pulled (even though some had not fallen out, they showed in the special digital X-ray to be all rotted). I would not wish any of that on an enemy. But, sometimes we have no choice in life but to do something that is not really all that pleasant.

So, all in all, even though I am not one to be able to "pat myself on the back", or "toot my own horn", I will say that over the years I've been elated with my own actions that lead into helping others. Those are the moments that I am the proudest of.


WEGO Writer's Month Challenge  #HAWMC

Creatures of Habit - WEGO #HAWMC for Saturday April 4th 2015

       Today's Post for WEGO Health Writers Month Challenge!

 

https://twitter.com/hashtag/HAWMC?src=hash

What a great post this will be for many! I've mentioned this particular subject pretty often.

We become "engrained" in a certain routine, or something we tend to do daily, or quite often, without even giving it much of a thought.

So, here is my "Creature of Habit" posting...

My daily "routine" is probably fairly boring to most, but for me, it is usually what deems how the "rest of my day" will be. Will I feel behind the entire day, like I am not getting all accomplished as I had planned? Probably! Will I look up and find I have actually done much more at an earlier time than I thought, so I may have a bit of "free time" to write more, and so forth?

My day begins with turning the coffee pot on, even though I quit drinking coffee, I do it because my husband drinks coffee. Talk about a "habit change"? He used to be a morning couple of cups coffee drinker. Now, like my Mom, he has developed a habit of drinking coffee ALL day and even into the evening hours. Weird and strange, but true. From there it is check the dogs water, and check their food bowls, fill them as needed, and put them in their proper places. Since they are both inside dogs, then I have to do a "paper check" clean that up and mop if need be, and put fresh paper down. Okay, then it is off to open all the blinds because I want as much light as possible in our home. So in just about every room, I have blinds I open first thing also so we can have a bit of "light on the subject". I usually join my husband on the front porch to check out the "brand new day" and see how the weather is. Of course TX weather can change within a breath's space, so it could look like it might rain like heck, and in a half hour, be sunny and not a cloud in the sky.

By this time, I am about to "die" for something to drink. Since I don't drink coffee anymore, it is usually iced green tea, with lemon and Splenda, or I've began this Coke Zero, Diet Pepsi, Sprite Zero thing now. I switch back and forth during the day from a "diet" drink to green tea. But, I am ALWAYS with a glass of something to drink in my hand, or a bottle in the car. Due to the Sjogren's, I HAVE to have something to keep my "whistle wet" as the old saying goes.

Then it is onto make the bed. I cannot stand to NOT have the bed made! that is one of those things that would drive me nuts, not to have the bed made up. I get the pups in their places of "habit" on the sofa. Then head to the computer, to check out the weather, see what is happening on Facebook, check out Twitter, and my blog, then I go and begin to weed through the huge load of crud in my email box. Thank goodness we have a "spam" program that for the most part puts the spam mess in a different box, but some of it still slips through, so through that I go, to see if I need to answer emails and so on.

I check the calendar and my "list". I never go a day without a "list" or "lists". Sometimes I may have several lists for different things. I could rarely remember my name if it were not on some kind of list.

Now, onto a "creature of habit" about some things that just drive me nuts. Of course the bed being made is one of them. But, I HATE the phone to ring before 9AM and after 6PM! Unless I am expecting a call before or after those times, it just almost makes me upset. I am one that does NOT like the phone to ring anyway. But. when it rings way too much during the course of a day, or rings too early or late in the evening after we have settled in to watch a movie etc. I get totally disarrayed over the phone ringing. One of my "habits".

I HATE any dish that is sitting not washed. I can't stand to have any unwashed dishes, silver ware, bowls. whatever. Before I go anywhere, or leave home etc. every dish better be washed and at least in the drain rack. Closing the toilet seat is another. One of those things I always do, and just get upset if I find it left up. (This my husband knows all too well!) LOL!!!

I take a handful of certain medications as soon as my feet hit the floor out of bed, and then I take my others about 10 AM every morning, habit that it is, then in most cases, I then eat a bowl of cereal for my morning breakfast, or more out of the habit due to not wanting my medications to upset my stomach. And for the post part it is usually cereal. Sometimes I've bought cinnamon rolls, or made muffins etc. But I am a cereal person, and I rarely ate cereal as I kid. So, that is quite funny and odd now.

Just about every day, I take a "break" about 4PM, and sit down with my pups, one on each side, to watch part of a movie, before time to cook dinner around 5:30PM or so. It is a habit, that I've kept for the most part, unless something takes me away from the house, or I am sick, but most of the time, at 4PM I am with those two pups and on our sofa for about an hour or so.

I always 'Pay" my bills on the 3rd of each month. That is almost "religiously". Unless something is strange as far as how that day falls in the month or so forth, I pay bills every month on the 3rd.

I ALWAYS have a list, my coupons, and my reusable bags when I shop. Never do I go without the very least my reusable bags. The list and coupons are there about 99 percent of the time also.

Every night without question, after we eat dinner, which by the way, is on two of our very nice wooden TV trays in our living room, and we "I" watch the "Nightly News". If the news happens to not be one due to a ball game etc, it just messes up my entire evening. I want to see the news, at that time. It is always on Channel 5 here, and up until "Bryan Williams" had his stuff happen, I always preferred to watch him, another habit.

I NEVER DRY most of my "good clothes" in the dryer. I always hang them on hangers, and let them air dry in the house. Jeans and all. I don't want anything pulled out of shape, or fading, or wrapped around anything, so I never dry my clothes other than on hangers.

I absolutely, unless I am too ill, do some type of writing daily. Whether it is on my blog, Facebook, on my book I am writing now, or even sometimes in an email to a friend, I write daily. I also always as a habit try to do at the very least ONE thing for advocacy. I try and it is definitely a habit, that I do at least one item, and usually it is several a day for advocacy.

I for the most part have a habit of being off the computer by mid afternoon. Unless something is very important, that is when I stop my "computer stuff", do my house hold cleaning, run errands and so on. But by about 2 to 3 PM, I am off the computer.

IF I bake something, which also a habit, I do without fail at the least 3 times a week. I always bake in the morning early. I get that done, and as whatever it is bakes, a cake, pie, cookies, brownies, crumb cakes, or whatever, I bake very early in the morning.

I am in the habit of if there is a shower curtain it must be pulled all the way out to dry. Now with my "glassed in shower" I ALWAYS spray it with shower spray, and open both doors all the way so they will dry out, without fail.

I cannot stand anything on my area rugs. We have wood floors, so we have large area rugs. If there is the least bit of anything on them, I vacuum without fail. I hate seeing those carpets with any thing on them such as lint, crumbs, dog hair, etc.

I am a habitual believer in washing my car by hand. Unless the weather is too cold, or I am ill, I wash the car by hand. I've done that for many years and feel it is much better for the finish if it is hand washed.

I HATE a wet dish towel. I always have two or three out, and I switch them around, so the one that is with the dish drainer is dry. It just irks me to pick one up and it be too wet.

I am in the "habit" of taking care of ALL of our medications. I feel if "I" don't call in refills, or do them through the computer etc. they will not get done correctly. So, I always take care of medication refills, I always do any banking to be done, I always pay the bills, and those are things that I've done as a "habit" all of my grown adult life.

I am in the habit of sending "snail mail" greeting cards to family. I send some online to online friends. But, when it comes to close family, I believe in taking the time to go, pick out the card special for that person, and writing in it to let them know I am thinking of them, and send those snail mail.

I also made it a habit that every year without fail I write a "Christmas letter". It goes out with our snail mail cards, and each year for as long as I can remember I've sent a letter telling others about the past year and what ever I happened during that time.

My "habits" are many when it comes to the routine things in life. It seems since I had a very difficult time when I was a young adult, I have been the "take charge" person in any relationship. I DO it, because whether it is paying a bill, making a doctor visit, buy groceries, and that includes my Mom's things also, I am the one that is in the habit of, I do it. As I said, even with Mom's bills, and anything with paperwork, or making appointments to see the doctor, whatever she has that needs to be done, I am usually the one who takes care of it. I had mentioned above about have issues when I was a young adult. Back then I had two very abusive relationships. One not so much, physical, but more emotional and mental. The 2nd one turned out to be an abusive drama for many years in all ways. From mental, emotional, physical, to not paying bills, or helping to support myself and the 2 kids (I worked full time so usually my own paycheck paid the bills), because the person I was with back then could not keep a job, or spent his paycheck before he even came home with it and so forth. So, at a very early age I decided I would be the one that took charge of most everything that is involved in daily life, from paying bills, to even planning a vacation, I did it myself.

So, creature of habit, yes. There are many other things. I always read on my "new diagnosis" or a "new medication" when that happens. One "habit" that began when my now husband and I first got together over 10 years ago, we without fail, always buy a "Sleigh Bell" Christmas Ornament every year. In fact, we have bought them from the exact same place, and I believe we have at least 11, if not 12 including this past Christmas. No matter what else is going on during the holidays, it is definitely a "traditional habit" that I make sure we get the Christmas Sleigh Bell Ornament by Wallace in fact every year and it comes from a small store in all places Kent, Washington. The first one we bought, we drove down to the actual store and picked it out. After that we moved, so I've had to order them, but it is another one of those wonderful habits, that is a memory maker for the years to come.

Cure Click And You! RA Clinical Trial for a "biosimilar" somewhat like Rituxan - Could You be the next "winner" in the clinical trial Race?

TEXAS in the San Antonio and Austin Area will be participating!

The purpose of this study is to compare the proposed biosimilar study drug rituximab (GP2013) against a standard approved treatment rituximab (Rituxan®) to see if the study drug is as safe and effective in patients with rheumatoid arthritis.

Rheumatoid Arthritis Clinical Trial

The currently recruiting trial listed on CureClick for rheumatoid arthritis is a clinical study for a biosimilar medication. We have received several messages about this trial so we wanted to post some additional information:

According to the FDA, “Biosimilars are a type of biological product that are licensed (approved) by FDA because they are highly similar to an already FDA-approved biological product, known as the biological reference product (reference product), and have been shown to have no clinically meaningful differences from the reference product.” 

For this trial, one group will be given the currently approved and available medication Rituxan® (rituximab) and the other will be on a biosimilar version of rituxumab. Neither group will receive a placebo. The goal of the trial is to see if the study drug is as safe and effective in patients with rheumatoid arthritis and attempt to show it has no clinically meaningful difference to the reference product (Rituxan®).

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MORE ABOUT THE STUDY FROM THE SPONSOR:

The purpose of this study is to compare the proposed biosimilar study drug rituximab (GP2013) against a standard approved treatment rituximab (Rituxan®) to see if the study drug is as safe and effective in patients with rheumatoid arthritis.

• The study drug (GP2013 and Rituximab) is administered by IV Injection (IV).
• At least 174 people have already taken this drug in clinical trials
• All study related medications, analysis, hospital visits and procedures are free

Eligibility Criteria:

Participants must:

• be at least 18 years old
• have been diagnosed with rheumatoid arthritis for at least 6 months
• have had inadequate response or intolerance to DMARDs (disease-modifying anti-rheumatic drugs) and 1 – 3 anti-TNF (tumor necrosis factor) therapies
• have received methotrexate for at least 4 months with 25 mg/week as the maximal dose

Participants must not:

• have significant liver disease, or congestive heart failure
• be taking a high potency of opioid analgesics (e.g. methadone, hydromorphone, morphine)

For more information about the study, please visit the link provided to you by your Ambassador.

For more General Information" about Clinical Trials see this link:

https://share.cureclick.com/r/29oy79A/about

#HAWMC April 3rd, 2015 & My Own Experience with "Random Acts of Kindness"...

                            Random Acts of Kindness      - WEGO Health
                                            #HAWMC - WEGO Health

Last year March 2014, the 26th day to be exact, I received what was I felt the most incredible “act of kindness and compassion” that I had ever seen or received.

I was in Washington DC, as a part of the Annual Summit “on the Hill” with the Arthritis Foundation. It was on the 26th, we had officially ended the Summit, and I was awaiting the arrival of my Mother-In-Law, whom I had never met. Even though we (my husband and I) had been together for 10 years, I had only gotten to know her through call, emails, and so forth. I was also awaiting the arrival of my spouse. He was going to be going to the Dallas-FT. Worth Airport, to board a plane and come to DC to join me. We were considering this also a vacation, since I had never been to DC before; so all of it was something we had looked forward to for many months.

About noon there on the East Coast, I received what seemed like several “emergent” cell phone calls from my daughter. So happened I had been outside standing in front of the Hotel there in DC. waiting on my Mother In Law to pick me up. My spouse, Jim was going to arrive a bit later in the evening, so she was going to take me to her home, and let me get some rest.

As I went into the lobby again, wondering why it was taking her “Hilda” so long to pick me up. But, in the same time frame, I had gotten 5 or 6 calls again, from my daughter. So, I went into the lobby a bit further, to call and be able to hear. My daughter began in a very frantic voice, also hysterical, telling me that Jim, my husband had been in a very severe car accident in Dallas on his way to the airport to fly out. Well, I almost fell to pieces, but was trying to get hold of the trauma team in Baylor Hospital where he was taken and find out more about his injuries.

At that moment, time along with myself, seemed to “hit the floor” literally. My knees buckled from underneath me, and I began to probably scream, people all around waiting to go to their planes etc, hearing my cries. One gentleman, who had also been in my “group” for the entire Summit, Chris Nieto happened to be standing there, and heard what was going on. Thank Goodness for that man. He took it immediately as he truly felt he needed to help me. He knew whatever news I had just received was not good at all, and as I tried to explain, I fell to pieces. I asked him to speak with the doctor at Baylor who was on the cell phone with me. I just was listening to this list after list, of things that were “wrong”, broken, out of place, from a broken shoulder, to a “broken back”. I nick in an Aorta, almost every rib broken, and again as he wrote down each item the list began to grow further into a place I felt someone had just pushed me off of the highest cliff known to man. Chris finished up on the phone, got me some water, all of my group gathered around, and Chris looked at me and asked me what I wanted to do.

I said “I need to go to Dallas”… ASAP, yet that moment I had no idea whether Jim would live or die before I even got on the plane. Chris told me he would be right back. In a few minutes him and the “Grassroots Manager” over the Summit for the Arthritis Foundation. Laura came to me and handed me the information and a “fax” I believe for me to go get my ticket and be on the plane headed to Dallas within a few hours. No hesitation, and within an hour I and Chris Nieto who lives in the Austin TX area, was with me, headed to the airport there in DC, so we both could fly into DFW (Dallas/Ft. Worth International Airport). He happened to be catching a connecting flight to go to another Arthritis Foundation sponsored trip in Colorado, which was for the Juvenile Arthritis Kids and their annual get together. He stood with me every step of the way. He made sure that I got my bags where they needed to be, got my ticket, and got me on the plane. In fact, he went and asked if I could be boarded ahead of some just due to the fact I was honestly in total shock at that time. I really could not at that moment tell you ALL that was going around and around in my mind.

Chris got me safe and sound to Dallas, helped me make sure I got my bags, and made sure I got hold of my son, who was on his way to pick me up at the airport. Then he had to get on his connecting flight, and as we parted ways, I just cannot tell you in words how much that dear man did for me. The kindness, compassion, the selflessness, all of the assistance and making sure I didn’t just totally collapse, was purely a miracle. And he was my walking, talking miracle for those first horrid hours.

He is truly a man of courage, generosity, of giving, of making sure everyone else is “lifted up” and are recognized for their achievements. He also has a dear wife, and two beautiful girls, one of which was diagnosed at only 9 MONTHS old with Juvenile Rheumatoid Arthritis. He helps at just about every event for the AF; as well as recently sits on their board of directors. Again, there is no way I could ever repay the incredible gift of help from Chris, and also the generosity of the Arthritis Foundation to fly me home immediately, no questions asked. I was on my way back to Dallas and that was just how awesome the foundation is and always will be.

I am so very proud to be one of their “Platinum Ambassadors” for 2014. In fact, since illness and some family issues kept me from going back to the DC Summit this past March, I received a box filled with a plaque recognizing my “devotion” as going the extra mile for them. I also received a great T-Shirt, which I wear proudly today, and an awesome reusable bag, plus some “buttons”, a “stress ball”, and our latest “Ambassador Outline” for all we want to do in 2015. Again, I’ve been able to keep up with Chris and his family through Facebook, and again I am still speechless when it comes to the pure and wondrous gift Chris gave to myself, and I know he would do the same for anyone who needed his help. It draws tears to my eyes of joy each time I recall just how wonderful of a man he was then, and how he shall continue to make his own mark against the horrid Arthritic Illnesses. Rhia Steele 4/3/2015

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.