#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.

Cure Click - What a Clinical Trial Means to You!

http://curec.lk/1HmayAK

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...

Clinical Trial possibly in your area, for a new "biosimilar" study!!!

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.

#HAWMC Wordless Wednesday!!! April 1, 2015

Okay for "Wordless Wednesday" the "Official" start to WEGO Health's April Health Activist Writer's Month Challenge

#HAWMC

Here you go, this represents "Rhia" and the things that I LOVE to do!!! Or may I say "did" LOVE to do! I have always been a "music freak"!!! And always wanted to play the drums, the guitar, and the keyboard. I took piano lessons for many years when I was a teenager. Thank goodness I can still "read music" fairly well.

BEFORE all of the Lupus, Rheumatoid Arthritis and Sjogren's... and before all of the joint replacements... my Husband, bless his soul, bought the drums for me in the background!!! They were a birthday present and I just had an incredible time driving the neighbors crazy!!!

We both play and write our own songs. He plays the guitar quite well (or did) also. I bought the blue "Fender" you see me holding and had just begin to learn a bit from him, when my own illnesses hit.

Then, a year ago March 26th, in 2014, while I was in Washington DC in fact at a Summit, he had been in a very serious traffic accident. Ran over by an 18 wheel tractor trailer from behind.... thus his days of guitar playing were also "iffy"....

Well, both of us have been able to play a bit here and there. We just can't go on for hours and hours like we used to... and we both miss it so much...

So, this picture does speak a thousand words for sure... about before, now and what we hope the future may hold... Rhia

Funny Times, Laughing years later, and Wonderful Memories that even 30 years ago are still so Humorous ....

Well today of course is "April Fools Day"!!!! I am sure you, I and many others will have a "joke" played on them before day end.

Actually, ironically for me, mine already happened, kind of..

I wanted to join in on WEGO's Blog post month or as it is called
 "Health Activist Writers Challenge Month"

I had the "list" so I went ahead and wrote my 1st post several days back. Well, I noticed a mixup in "dates" on the information, so I found out actually they start today, but it is with a "Wordless Wednesday", and I had written about a couple of "still funny" things that happened many years back! I thought by the .PDF we needed to write about something funny that had happened to us.

So.. since I've already written it, I'll post it with the Twitter sharing tag for my readers and maybe those at WEGO will get a kick out of it also.

So, here goes, my 1st Blog post for April Fools Day! #HAWMC

April 1, 2015 WEGO Post #1 For April Fools Day - Something, or Someone, or a Time that Always makes you Laugh


Years back, I was about 30 years old or so, we used to go on an annual snow skiing trip to either Santa Fe New Mexico or on up to Pagosa Springs, CO at the Wolf Creek Ski Resort. It was our trip to celebrate my birthday on the 15th of February each year. I always spent months, in fact the entire year planning it, saving for it, and it was always a time I cherish in my life.

One year a couple that lived next door to us, Rex and Jeanie, were going with us that particular time. We had been friends for a long time, and always enjoyed going together. This particular year, we had decided to ski in Santa Fe, NM. I had only been a couple of times then, and it was a bit closer than going on up to Pagosa Springs in CO, so we decided to stay there and ski.

There was a particular restaurant we ate at, and also a particular hotel we always stayed at every year. Staying there and eating at this special Mexican Food Restaurant were “traditions” each trip. This one year we decided to stay at a different hotel, and since we spent most of the time on the ski slopes, we thought we would just share a room and save that money for more skiing. Well, we had left Ennis Texas extremely early as usual. I never slept a wink that night before we left, so we were usually out the door and on the road by between 3 or 4 AM. It was about 11 hours or so to Santa Fe, depending on which route we took. Most of the time we would travel on Interstate 40, so we would go through Ft. Worth and hit I-40 up that direction. I sometimes helped with the driving, but this time the guys changed out, and they did the driving. There was just a magic each year about that trip. We rented a video recorder (this was back when they were huge and weighed a ton), so we had most of the trip on “record” to remember the rest of the year.

When had arrived in Santa Fe, just about noon, as our plan usually was, always about time for us to eat, so we went to the Mexican Food Place and had the feast of a lifetime. Between a couple of margaritas’ or a “cerveza” we about laughed our way right out the door. All of us were a bunch of comedian’s on the slopes and off during these incredible journeys. Each year seemed to be more special than the last. So, we decided to go back to the room, get unpacked the rest of the way, and possibly go to the downtown area to see all of the wonderful artwork, bead work, and just awesome pottery that the people there in Santa FE always had out on the “square” around all of the beautiful buildings.

Jeanie and I were unpacking and talking. All of a sudden we didn’t hear the guys making jokes and cutting up, so we turned around and both of them were totally “sacked out” asleep, one on each bed. It was already funny enough, because both of them began snoring in “tune” together. The more they snored right in tune with each other, the more the both of us got tickled. Well, my “then husband” sat up in the bed very casually and said,  “What and the heck are you two laughing about? What is so darned funny?” I about busted out laughing again and said you and Rex were “snoring in unison”. He looked at me very seriously and said,“NO, we aren’t. We are in Santa Fe, not “unison”! I cannot tell you how funny that was! WE made fun of him the entire trip, constantly asking him if he had found “unison” yet and repeating what he said. It was just hysterical.

So, that whole ordeal became a joke between all of us for years. Every once in a while we would ask my ex, “Hey have you seen unison” lately! He would just turn red in the face, and get almost mad at us for making such fun of him.

On the very same trip, the 2nd night there, we decided to try a new place to eat. I had never really eaten much “Chinese Food” or any type of Asian cuisine. So, we decided to try a Chinese dinner for a change. We went in and the place was not busy at all. But, this was in the middle of the week, so we figured they just weren’t all that busy because of that. It was fairly dimly lit. But, it was adorned with all of the Asian decor. I was quite impressed with the “ambiance”.

Anyway, an Asian gentleman came to take our drink orders, gave us menu’s and of course I had no idea about that type of food. I had only eaten this type of food possibly once or twice, and everything on the menu sounded good. It always did that first night after being on the mountain top all day long. Usually all of us were starving from all of the activity of the day. Anyway, we each picked an entree’ and the guys asked about “fried rice” and if it came with the meal. Well, I am sure quite sure if the woman taking our order at the time really understood the question or not. She made the comment about each would get a side of “fried rice” of our choosing, chicken, shrimp, vegetable etc. So, above our regular orders we asked for “one extra bowl” of fried rice on the side. I think most of us had chosen something with noodles in it, or figured the way she talked the “side” with the meal we ordered would not be all the big.

So, she took our orders, and it wasn’t long until TWO of them, her and the gentleman who had seated us came out with the HUGE serving tray of “many” plates and bowls of food. At first we thought they had mixed our order up with another group that was there. But, no it was “our” order. So, they begin loading our table up with the plates with the entree’s on them. Then here comes all of these “extra bowls” of fried rice!!! They not only brought the “side” order of rice with our entree, but they also brought EACH of an a huge EXTRA bowl of fried rice on the side. In fact our table was almost not big enough to hold all of the plates, bowls, and everything they had put in front of us. We sat there almost dumb founded, but thought well, that is what they thought we ordered so that is what they brought us.

We began eating, laughing, talking, and spent at least an hour just tasting the different dishes all of which were delicious. Yet, even with all of us hungry, and the guys could eat everything in sight usually, we still had bowls of rice left over. So, it was about time to settle up the bill and leave. The woman came out, refilled our tea glasses, and then looked up at us and said just as politely and calmly as could be “You want more fried “lice”?” Oh good gosh, all four of us burst into tears laughing. Here is bowls of rice there was no way we could eat, and I even thought about taking some of it back to the hotel, but I knew there was no way we would probably eat it that evening, so we decided not to take a “doggy bag” with us. But, between us having ALL of those extra bowls of rice, and her “Asian” accent; then asking us if we wanted “more” fried rice was almost too much. We just about wet all over ourselves going out, and for the rest of the trip we kept asking one another “Do you want more fried “lice”?” Again, between the “snoring” in unison, and now the “fried lice”, we had the trip to remember for a lifetime. In fact, it has been something like 20 plus years since that trip, and still to this day, my now husband and I get a kick out of making a silly comment about, No, we aren’t in unison, we’re in Ennis!”. Of course, we had to wonder if that entire kitchen in that Chinese restaurant were also hysterically laughing at us for ordering all of that “extra fried rice”? They had to have just been as tickled at us as we were. It was very obvious that we had not ordered Chinese food very often.

There were many “moments” during those ski trips each February that I will truly cherish for a lifetime, and can’t help but grin when I think about them. Now, I am not able to go snow skiing. Due to the replaced knees and shoulder, the Lupus, RA, Sjogren’s and chronic pain issues, my snow skiing days are well past me now. But, the memories, the laughter, and some of the things that happened back then will last a life time.   Rhia Steele 4/1/2015

Thoughts on the Arthritis Foundation Visit and the Summit on Capitol Hill, and others that were and are there this week!!!

....  Plus we will be able to get some of those extremely important issues covered like the "biosimilars" (which also is going to be on a state level of legislature also). the business about affordable medications, more from the DOD about our armed service people coming home and facing some of these often crippling illnesses, plus get the Pediatric Rheumatologists more plentiful for the children with Juvenile Arthritis, JRA etc. There are MANY "Eggs" in the basket once again this year, so I am happy to know that I will be an important part to helping to possibly gain more access for patients on medications, get more research and development off the ground, and as the AF says, get to the point that everyone on the "Hill" and not there to understand that "Arthritis is Unacceptable".... I appreciate ALL of those who were able to go to DC. I still am so bummed that I missed it. But, I guess I now know "why" or part of why I was not able to go. My health a huge part of it, plus there were several things I needed to be here at home about already this week, and I still have more. I had the CT Scan yesterday, so as I said in a previous post, I hope they "find" what the problem is. If that can be done, THEN as stupid as it sounds, I think I will somewhat be relieved. I, along with many feel when we go into our doctors complaining of certain symptoms, especially pain in some ways, that if there is not some "thing" they can point it to exactly, that we are not believed as much as if we go in, they do labs, scans and whatever, find something "tangible" to say "this" is what is causing that severe pain... then we feel it is far better received all too often by our physicians, family, friends and so forth. We ALL are all too aware of "silent illnesses" that don't just "show" and even in testing at times those tests are just as good as the people doing them, reading them etc. So, I know for me I just think if they can "pin point" something in my lumbar spine, like I suspect some "compression fractures" due to the osteoporosis, then my doctor will be more apt to "see" that YES I am in more pain and my pump should be upped. But, of if that stupid scan does not give a "bird's eye" picture of something obvious, then will he still take me "seriously"??? He should, he has been my pain specialist now since about 2008 or so. He is the one that got me on the right medication, and then put the pump in when we reached that place in late 2010. Wow, it is hard to believe it is coming up on 5 years since the pump was placed on my right side! Time flies by much too quickly. But, I also still suspect part pf my issue is with my hips. I've had them injected with corticosteroid on several occasions. In fact the last time, both hips were so bad, I asked my orthopedic surgeon to inject both at the same time! He did, and I got better for a long time. So, if the back shows something then I will be "relieved"... and yet if something still seems "off" then I will see about my orthopedic doctor maybe doing a CT scan of them, or sometimes just X-rays are good enough in hips to show the degeneration. Like my hands, thumbs, wrists and feet, and toes. All of that show up in a regular X-ray.

So, I also of course below talked about the issues with my Mom's sister, and it is at the point, that I just hope she hangs on until tomorrow. I am taking Mom their tomorrow, and then we will go to my doctors appt after that.
I just have not gotten a good enough information, that I really know. I am under the impression that when they call in "hospice" that usually means things are heading downhill fast. So I certainly don't want my Mom to put this off ... I think she just has a difficult time seeing my Aunt in the shape she is in, so she kind of puts off visiting,  because of how hard it is on her. But, time is of the essence now for sure. So, no more putting it off, even if I have to drag her kicking and screaming LOL... tomorrow to see my Aunt and Uncle.... Please any and everyone share your visits to the "Hill" with myself and others... I would love to hear from you!!!!

A Bit OF "Personal" Goings ON I wanted to share....

In between all of this, I have not mentioned that I got a call from Mom last night. Her last living sibling, her sister, who is about 3 years younger than Mom, has been battling "terminal" stomach cancer for a long while. Well, my Uncle called Mom and told her that my Aunt now has Hospice coming in all the time. I feel from what he said she does not have much longer. So, this week is so nuts for myself and Mom, that I hope and pray my Aunt Geri makes it till Thursday. They live in Mesquite up by Dallas and it is not far from my Pain Doctor. I have an appt with him on Thursday afternoon. So, our plans are to go up and visit my Aunt for a bit, then go on over to my doctors for my appt. This is a horribly busy week for me, and I am already feeling run down. I had the CT Scan done earlier this morning, and now we shall see what that has to say. I fear it will not "show enough"... which as stupid as this sounds, I hope it DOES show what the heck is causing all of my added pain!!! My pain doctor is going to "up" my medication in my pump, so we need to know where the freaking pain is coming from. I feel it could be from "compression fractures" due to my osteoporosis being so severe. But, I am also having major pain in both hips... and then down the back and sometimes front of my legs, all the way to my heels. So, please keep my Aunt, My Mom and our family in your prayers. This is my Mom's last "close" family member, besides myself and my two kids. So, she has lost my Dad, both her parents, and then her brother and sister in law. I know she is taking this much harder than she lets on. I am worried about her too... she kept repeating herself and asking me the same questions over and over today when I dropped by, so I know she is just upset, plus I feel she may have some "dementia" herself. Both my Grandfather, he had Alzheimer's and my Grandmother had dementia... so it runs in her family... also my daughter and her husband and kids are really going through a tough time right now.... more on the level of a job situation, and has to do with the oil business. Her hubby has worked for this company for 10 years or more... and there is lots going on for them also... so I would really appreciate your positive thoughts our way...

 

 

Of course, everything always is either feast or famine and we don't realize at times when something either keeps us "home" rather than going where we feel we should be, or having to be some place and you never expected that either. I've been waxing and waning now for months with this "new" type of almost at times unbearable pain. But, this is my hips, my lower back, then down my legs almost into my heels. It seems to be worse on my feet, or if I stand or walk a bit more than around the house. Yet, now I notice if I sit here at my computer in my chair, I also begin to hurt and I have to get up and walk away... so it is almost damned if I do, and damned if I don't.... I shall update my post as things happen.... until then keep all of us in your thoughts and prayers.... Rhia

Arthritis Foundation Annual Summit on the Hill in DC Happening NOW!

Get your fingers in gear and get ready to do some "E-Summit Advocacy" things, if you were not able to attend the Summit. I feel this will be an incredible couple of days that will certainly help to enhance the future treatments, research, physicians, tests and reasons to why these illnesses attack so many of us!

http://www.arthritis.org/advocate/advocacy-summit/virtual-summit/


LOTS of things going on today on Capitol Hill - Check your FB and Tweets!!!!