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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!!!!

I am with you and the Arthritis Foundation in spirit and in thoughts and well wishes!!!

Since TOMORROW is the HUGE "Summit on Capitol Hill" Day for the Arthritis Foundation. This is just one of the many "Annual" events AF puts on throughout the year. There is the "Jingle-Bell Run", the "camp" for the Juvenile Arthritis Patients, there are also other walks that are done around the various states. In fact here in my part of Texas, we will be having a get together in April! I am so hoping to be able to go! So, since I am sure there are many people out there that are "aware" of the Arthritis Foundation, and that they are a non-profit for Osteoarthritis and Rheumatoid Arthritis, they do any and every thing imaginable to HELP US as Patients, Caregivers, Family Members, Friends, and those that have children with JRA or JA/Still's Disease. From being up front and personal with our Nation's Congress, the AF is always reaching out to help with some bills, laws, and even the different states platforms when it comes to patients with these illnesses. AF addresses the disparities involved, trying to find ways to get more researchers, more medications, more educated physicians, nurses and all medical professionals, and also work on some things with the DOD which involves our own troops that come home all too often with some type of "Arthritic" illness that takes its toll on their lives state side. The AF brings "patients" in as Advocates, and Ambassadors, takes them to Capitol Hill annually about this time in March each year, to visit the different Representatives in our areas, and "educate" them about our illnesses. We also tell them how they can help immensely by "supporting" the Arthritis Caucus or even being a member of it. We talk to them about the "real day to day" hellish at times living we face. We explain how things need to change in order for us to be more able to work, to take care of us, our families, and participate in many activities, but without the proper treatment EARLY in the game, and a proper well educated physician that knows his or her stuff, we often wind up totally disabled, totally unable to take care of ourselves, or much of our things, and then the quality of our lives are painful to not just us, but spouses, children, family and friends.... OF course we all totally understand that these types of medical ideas - whether a research study or clinical trial, maybe a drug that is needing approval from the FDA, thus possibly more of a wait to get it on the market, the VAST
arena" of prices on these "new medications" and how can patients possibly afford them? When you are speaking of a medication, one injected at home weekly, at the "cost of" $4,000.00 a MONTH, plus insurance either will NOT PAY any of it, OR the "co-pay" you would owe is so astronomical there is no way you can even pay that. Then the money it takes to get a research project off the ground. Researchers may spend years and years on ONE idea, ONE cure, ONE reason... for the illness in the first place. Then that may hit a wall, and after all the money and time, nothing comes of it anyway.
So, in front of the scenes and behind the scenes the Arthritis Foundation has brought and continues to bring patients together, in a bond, a purpose, and driven to "change" what is now just purely unacceptable. As I have thought of each of you all day long today, knowing that each of you are there and are "taking my place" to get the word out, to get Congress to really "listen" and act! I feel this will be a very incredible Summit this year and MANY things will start to be accomplished over the next few days.
My prayers, thoughts and well wishes to all of you there. PLEASE POST, email, tweet and so forth any and everything you can if you get a chance! I will be closely watching Twitter, FB, and the others, watching for any thing that may get posted. smile emoticon So, if you don't have time send the pics and so forth to me, and I will definitely be here, trying to do all I can to support the AF and all of you..... my well wishes and may all of you stay warm, healthy, and safe! Rhia Steele

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

Clinical Trials - Cure Click and more information

 

See Cure Click at the URL Above and Take the "Hassle" out of Clinical Trials