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