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

AS YOU Go to DC Next Week to Represent ALL with so many health issues, may WE ALL do our part to BREAKTHROUGH the disparities that hold back Cures...

Well the "day of infamy" is almost upon many of us! That is the packing, preparing, and getting on that flight to Washington DC for several activities going on there this coming week! I believe our Congress will be a bit on overwhelm at times with all of the health activists, Ambassadors, Volunteers, and many that will be telling their own personal story about their chronic illnesses, the different disparities and challenges they face, some daily, and how much more we need in research, in new technology, new medications, more specialized physicians, of course which all take lots of dollars to be able to fund some of these extremely needed actions. Life is already a huge enough daily challenge, to work, take care of family, kids, go to college, and participate in the "daily" life of living. Then you add on top of that, chronic illnesses, chronic pain, being unable to get the doctors and medications you need, further more possibly not being able to even get a "real and proper" diagnosis FIRST so you can receive the treatment you need. The amount of "challenges" that those of us with chronic illnesses face, especially when the diseases are often arthritis, autoimmune, or both, and we still have so many UNANSWERED questions about these illnesses. Are they genetic in nature? Is there something on Earth, in our water, food, land, air, that is causing so many more of us to become ill with these chronic diseases? It is almost unbelievable to actually think about the growing numbers of those (and especially once again women) at an alarming rate being diagnosed with autoimmune, autoimmune arthritic, arthritis, FM, CFS. MS. Myasthenia Gravis, and then the other "ailments" that follow along with these "main illnesses"... brain issues, heart problems, lung problems, bones, joints, spinal issues, and then with Sjogren's the "dental" problems that are so very severe so quickly, that within months, like myself you find you are losing every tooth to this horrid disease, and there is not a thing to do about it, but have dentures. You cannot stop it or even slow it down. I tried. I was meticulous with my dental health, always had been. but, even as meticulous as I was, also using the couple of medications available, along with keeping my mouth moist, chewing sugar free gum, you name it I tried it, yet I still lost ALL of my teeth in less than a year to Sjogren's. So, each and every person, whether you get to go to DC this week and tell your story, or you are sitting at home, possibly too ill to attend, and you do your "advocacy" work from your computer, you send emails, you send snail mails, tell your own elected officials, and not just "federal" but our STATE Officials, and even Local governmental officials need to be a part of this growing, ever enlarging issue of autoimmune illnesses, and rare diseases. All also goes along, with people getting the help they need, so they can afford their medications, they can afford and be seen by the proper physicians, they can afford the surgeries, or whatever their treatment needs to be, even like myself, trying to PAY out of MY POCKET over $15,000.00!!!!! cash for my dentures to be put in properly... there are not many people around with that kind of available money to spend in one whack at a dentist! THIS NEEDS to be PAID FOR MY HEALTH INSURANCE! IT is A HEALTH PROBLEM, NOT DENTAL THAT CAUSED ME TO LOSE EVERY TOOTH!!! But, we ALL need to stand up and say NONE of this is RIGHT, NONE of this is ACCEPTABLE, WE should have the medical, dental, eye and more CARE of PROFESSIONALS and experts that can help us live somewhat of a normal life. The ALMOST INTRACTABLE PAIN I've been in over the past week, SHOULD NOT BE!!! I SHOULD not have to wait, I should have been able to have my medication UPPED the next day, not a week later! I HURT! I HURT to the point, that it's stopping me from doing what I love the best, my advocacy, my writing, my helping others.... my taking care of my own home, shopping. and helping Jim and my Mom... ALL of this is just WRONG! AND ONLY YOU AND I can MAKE IT RIGHT! So, for ALL of you whether you will be in DC next and able to "stand on the steps of the White House" as I used to say, and plead my own case and the case of others that could not attend, or if you are home, and not able to attend you still MATTER! YOUR VOICE will STILL BE HEARD! We must RING OUT, CRY OUT, and say ENOUGH IS TOTALLY ENOUGH! WE are one of the MOST INTELLIGENT NATIONS in the entire WORLD! There is NO REASON that our incredibly talented researchers, doctors, professionals in these fields can't find solutions, but they need funds to get these types of things running and off the ground. Again, I wish ALL next week an incredible and memorable trip to DC. May your voice RING true for all of us... from patients, physicians, family, friends caretakers... researchers... may we FINALLY BREAK THROUGH the "thick headed" thinking of some, and get brilliant things accomplished! As tears roll down my face, I beg of all of you to stand up and tell your story... to stand up and tell a story of a friend, family member.... stand up and be heard!

RA Connections - in the Texas/OK area - IN April!

This is awesome!!! Everyone in these areas of Texas or OK this is the time for you to get even more involved!!! I am planning on going to the one in Addison TX for sure! #RAConnections

Excited, Thrilled, Disappointed, Upset, Mad At Autoimmune Illnesses, and sometimes just upset with life in general - Not able To go to The Arthritis Summit next week!

I've not said much to anyone about my current situation with the autoimmune illnesses, pain, the severity of pain, a headache now that just won't go away, and all of the stress these autoimmune illnesses have caused me over the past month.

I always know, for ANY of us, plans sometimes change within a day! When you have a chronic illness and/or chronic pain, every day can be a challenge! WE can have our "great days", our "good" days, our "okay" days... and honestly it seems more days that it is SUCKS! These illnesses completely destroy our lives as far as whatever normal is.

They take us by the hand, heart, body and soul, and sling us around to the 4 corners of the Earth. We never know if we will land standing up, or sliding down that damned steep hill, with the rocks, twigs, gravel, and all scarring if not our "bodies".... our minds for sure.

I realize that "autoimmune illnesses" are NOT the ONLY diseases that are chronic and hit us in a haphazard way of life. But, they tend to be really good about waiting until we have some awesome plans scheduled, then totally ripping them to shreds within a breath's space.

I've been fighting with what I have felt was a Lupus flare now for weeks. I've also come to the place I MUST get these bottom teeth, "implanted" and anchored down. It is way overdue, and it is causing me to have all kinds of stomach issues, since there is so much either I can't eat, or I can't chew properly, thus I either avoid those things, or try to eat them, and almost choke, or they go down half chewed which is horrid for my stomach.

So, I knew I was facing a possibility  of not being able to go to the Summit with AF next week, which SUCKS big time, since I am one that made a "Platinum Ambassador" and should be there to represent all of us that had that honor, and be there to do what I am supposed to and that is to get those in Congress, "educated", "on-board" "possibly involved in the Arthritis Caucus" and backing the Congress people that are in the Caucus.

Plus I feel it is also my duty to lay out the "agenda" for AF 2015, and the things we need and hope to accomplish, from the issues involving now our "state" representatives, more on the realms of the DOD and the role in arthritis for our men and women that come home and develop these illnesses, to getting research out there in a more advanced way, and to "teach" ALL, public, government, professionals, the medical world, caretakers, patients, ALL about how "arthritis is NOT ACCEPTABLE" for anyone to have to live with.

So, to NOT be able to carry out what I feel is my duty to do, has really put me in a tailspin of hurt, worry, and let down. I feel I've let down the AF, the Ambassadors, and let down everyone who has stood beside me all last year no matter what helping me to see, even though I felt I was not doing enough, I was doing plenty, even when I felt like I wasn't.

Now I have developed something as of day before yesterday, that came on very sudden and hit me like a brick wall. I am not sure if it is a bad flare, or what. But, between a headache that is the WORST HEADACHE I have ever had in my life, that will NOT GO AWAY...my strength is none, I do well to walk across the house, I am freezing one moment, burning up the next, and I am in extreme pain from my head to my toes.... I feel as if someone has beat the literal hell out of me with a baseball bat, then ran over me with a car a couple of times. From my thumbs, all the way to my head, and all the way to down my toes, I HURT! A very DEEP BONE ACHE, that is relentless! Plus I ran low grade fever all day yesterday, and this morning, I can tell my body is fighting the fever, because I feel so damned lousy... I am hot one moment, chilled the next, cold the next, sweating the next... and our very HIGH Humidity is NOT helping it at all.

Anyway, I honestly am not up to sitting here, so I will close this for now, and explain more over the next couple of days.

But, I DO INTEND on doing EVERYTHING I CAN FOR THE E-SUMMIT!, and posting to social media and so forth as the AF storms Capitol Hill on Monday and Tuesday! I wish all of them luck, and hope it turns out to be an incredibly awesome Summit!!! Go Get Um!!!! I will be there in spirit....

Cure Click- Alzheimer's Clinical Trial - Thought some maybe interested in this!

http://curec.lk/19F3Fgh

Even those this is not "autoimmune" at this moment, I know many of us with brain fog issues, or that have had Alzheimer's in their family, like I have had. My Grandfather had full blown Alzheimer's and my Grandmother developed dementia also.

This can be done online, so I don't believe there is really somewhere you must "travel" for this clinical trial.

The link is above, and feel free to ask questions, if you have them. I know I participated in the "initial" trial information and I am supposed to let them contact me for more information, due to my answers to the first round of questions online.