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!!!!

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!

PLACES I FOLLOW IN MY TWITTER - "Twitter" Hashtags...

As our "methods" of finding information online, or passing information around online continue to evolve, it is sometimes almost impossible to keep up with what everything means... we now have "twitter", and also "hashtags", we have Facebook groups, pages... we have Pinterest, blogs, Linkedin, we can "follow" some page, group, non-profit, we can be volunteers, Advocates, Activists, Ambassadors, we can be the ones ill with chronic pain, chronic illnesses, and the thousands of online sites you can get to for information about everything from doctors, medications, Pharmaceutical Companies, we can find kin folks, friends, classmates, ancestors, family trees, online books, online instructions... we can order online & get things in email, or by "snail mail", or pay bills online and have it in "real time" post to our accounts.

Our "daily" online world changes what seems like every moment. If something happens in a country thousands of miles away, we can know it in an instant. We can save hundreds of thousands of lives in knowing about large storms, violent eruptions, medical history in the making, watch surgeries online, watch directions of how to online, see our friends and family online, talk to everyone online.





I find I have a difficult time keeping up with exactly what some of our newest "ideas" mean. About the time I "almost" figured out Twitter, and hashtags, then this new "hashtags" main came out, and I am trying to figure out the proper way to use them. It seems they can be an "instant link" to every "search term", site, Facebook page, everyone on Twitter... technology in the making when you breathe in and out, something new has happened. So, I am "listing" some hashtags that you might find useful in a general sense of your searching for different things.

I will add to this list as I go along. In fact I may put this into a different "page" so it will be on top and available for you....

           
#AARDA

#Chronicpain

#sjogrens

#partD

#RA