WAAD 15 - Begins Friday! The "race around the globe for Autoimmune Arthritic Awareness!

World Autoimmune Arthritis Day

In addition to the online race, with 2 dozen nonprofits competing to win WAAD15 while spreading education and awareness around the world, we have MORE for you during the 6 day online World Autoimmune Arthritis Day experience!
There are FIVE webinars you can register for as well. IF you are also registering to officially play WAAD15 then these webinars can earn you major mileage points for yourself!*
The second webinar of the event is Saturday night (USA) at 7:00 ET (9am AUS/11am New Zealand, Sunday), which deals with the frustrations of awareness, delay in diagnosis, and access to treatments- all associated with living with an autoimmune arthritis disease. The official Hosts and Event Coordinators of WAAD15, International Foundation for Autoimmune Arthritis will be leading this session. There will also be a special feature discussion on PsA with guest Marel Pike, from Secret Psoriatic Arthritis Business, and materials referenced from the National Psoriasis Foundation and IFPA (International Federation of Psoriasis Associations).
This will be a casual, "chat" type webinar with a Q and A session at the end.
You can register for this FREE webinar here: https://attendee.gotowebinar.com/regist…/6827783956463713793
You can learn more about WAAD15 at www.worldautoimmunearthritisday.org!
*While it's not required to register FOR FREE to play along with WAAD15 you still should to get the full experience. First, your registrations earns your 3 favorite nonprofits 25 mileage points each towards winning WAAD15 and enables YOU to log mileage points as an official WAAD15 player...so YOU can win prizes too! You can learn all about WAAD15 and register to play along at www.worldautoimmunearthritisday.org

Just wanted to remind everyone to go to the WAAD15 Website and Register for FREE! This year the event will run for about 5 to 6 days, and will have some of the best information from many sources when it comes to Autoimmune Arthritis - More information is listed below and the URL you can go to for registering
and more...

The Arthritis Foundation and More of its Goals for 2015

The Arthritis Foundation Being an Ambassador & Just how incredible of a Foundation it is.

I've talked a great deal here on my blog, as well as on Facebook, in emails to friends and family, along with spreading the word here in my hometown, and even in our local newspaper, I've had a couple of articles published.

I know at times when we think "non-profit", charity organization, or other ways they are often referred to, it gives the idea that they "collect money through donations" and use those to help others, possibly for some research, and so forth.

Actually, that is not all that the Arthritis Foundation does at all. They are an incredible Foundation, created by some fantastic people, that have changed the face of arthritis throughout the world. They bring "patients" and "caretakers", even our youngest of patients the kids with Juvenile Rheumatoid Arthritis, and have them involved in the annual "Summit on the Hill" each March on Capitol Hill in D.C. in order to have more funds, more awareness, and more support through Caucus' and those Representatives that can help to make research, awareness, and also others types of assistance available for patients, families and caretakers.

They are a true leader when it comes to "arthritis". Whether it be Rheumatoid Arthritis, Osteoarthritis, and Juvenile RA, and/or the complications of those to a standstill. They feel that anyone that has to suffer from these horrid diseases, that can't get the medications and care they need in order to have a normal life, as being totally not acceptable in any shape or form.

They are warriors in the battle of these horrid illnesses and diseases. They have made an impact through not only the Federal Levels of government, but also in our States legislation to chance things so that "we" as patients can have affordable medications, access to the proper care, making sure that "generic" medications are virtually the same as the original name brands.

Not only do they hold the annual Summit each year and see each and every Senator/staff and/or Representatives, they have also changed things that were very wrong with insurance coverage for people with these illnesses, and helped to stop the "insurance" companies from telling the doctors what or what they cannot give to their own patients.

They have also along with the Department of Defense started a program years back, where our women and men that come out of duty home, all too often to suffer from some type of arthritis and/or autoimmune illness, have a "face and name" in that respect. There are studies about why so often a "well" soldier comes in from a stent of duty, only to realize they have been "taken down" by some type of arthritic ailment. The chances of that grows higher each year, with troops coming home to be in much more pain and suffering than to be in the wars.

The "AF" Arthritis Foundation provides dozens of opportunities for those who wish to become a "voice" by being able to become an Ambassador, help with other volunteer efforts, write letters and emails to your representatives, attend different events, such as the "Jingle Bell Run" and the latest which is the annual "Walk for Arthritis".

Over and above all of those, they also have events for those kids with Juvenile RA. They have week long camps, are also there at times to speak to the Congress, and help in some many ways when it comes to fighting for a cure for these diseases.

So, whether you are able to give a few hours of your time to help out, send out emails, hand out information to others in your community, do a local fundraiser, get the word out like this through blog postings, social media, your local government, newspapers,attend a "Town Hall Meeting", or however you can give of your time, all of those things and so much more are crucial to "solve the mysteries" of these life altering diseases.

Please go to:

http://www.arthritis.org/

                      and be a "Champion of YES!"

I will post more about my own "Ambassador" role, and in fact I was made a "Platinum Ambassador for 2014! Which is another one of those incredible honors bestowed on those that give of themselves and of their time to make a difference for "every one"!

 Below explains more in detail of just how crucial it is to be a "Champion of Yes!

 

Champion of Yes.

Our Voice Resonates Loud and Clear
All-In
We are all driven by a passion and commitment to work that goes beyond the call of duty.
Expert
We continually strengthen our longstanding track record of leadership, and apply our authority to initiatives that are escalating technological, medical and scientific advancements every day.
Bold
We are tenaciously and aggressively attacking arthritis and its effects, with a loud voice and loyal persistence that will never back down.
Ever Present
We are here for the long haul —when, where and how people need us — maintaining relevance in every field and facet that affects arthritis.
Brave
Together, in the face of darkness, we possess an optimistic outlook and winning spirit that courageously leads us.

arthritis.org

Arthritis is a thief. People with arthritis know this full well. It steals everyday joys and long- term dreams. It isolates and ostracizes.
It is painful. It induces a spirit of No.
As people close to the Arthritis Foundation, we know that it doesn’t have to be this way. We are in a unique place of authority and action, with the purpose of finding a cure, but also fighting for the everyday victories.
We Exist to Conquer Arthritis
The Arthritis Foundation is focused on finding a cure and championing the fight against arthritis with life-changing information, advocacy, science and community.
Plan for Yes
We chart the course for the arthritis community, helping families develop personalized plans for saying Yes — day after day.

 

Sjogrens' Syndrome Foundation - Walk A Bouts for May the Annual Awareness Month

I was trying to put a message on Twitter but of course stupid me, was not thinking, so This horrid disease like a thief in the middle of the night stole ALL of my TEETH within a year!!~ Not only has it taken my teeth and created a HUGE expense for "special dentures" but it truly messed with my own self-esteem! Even though I have the dentures, I must take them out completely at night every night, and sometimes at home, I don't put them in for several hours. When I look in the mirror at myself with them not in, I appear to be a 90 year old woman with all the wrinkles, no lips, and the "sunk in" way my face looks. that are not there unless the dentures are in. So, I attest to this disease needing MORE research, Actually, there is not ONE medication for "Sjogren's". There are a couple of meds that may help "somewhat" but neither of them really work very well. I take on of them daily "pilocarpine" and I truly don't see much of a difference. ... Like ALL autoimmune illnesses, they cause so very much more "damage" to the body, that often we may not realize until, like myself, my teeth began to fall out, from the gum line... even taking medication using everything I could for cry mouth, chewing sugar free gum and always sipping on something - so there is not a thing I could have done or not done to keep this from happening.

http://events.sjogrens.org/site/TR?fr_id=1060&pg=entry

When Life changes upon a "dime"... how do you cope? "It is not easy to be... me"...

Further information on our friend and client in Seattle. He may have that portion of his skull that they removed off for even a year. He will have to wear a helmet to protect his brain during that time (which I had also read). They will "freeze" that part of his skull in a special way and then can put it back later after things are settled. They say that even though he is responding and seems to know everyone and so forth, he seems to have no movement in his left side of the body at all right now. What really makes this difficult on Jim, my husband, is that after the accident a year ago, he is also basically left with his left side also the one with the most damage. Of course Jim's is from the nerve damage of the spine being basically "broken" from C-7 through T-7. But he continues to "regain" more use all the time in little ways. The nerves can somewhat regenerate, even though just a few years back, they thought they could not. Researchers now know that some nerves can definitely "heal" themselves, it just sometimes takes months or even years for that to happen. Fortunately it seems that his "autonomic" nerve system is intact. Even though they have him on a vent, he is breathing over and above it on his own. So, it will be a moment by moment watch for him. We never really have gotten exactly what happened, but it appears the brain bleed was probably stroke related. So, only time will tell. I am sure the biggest concern now, is of course the swelling on the brain, and fluid, he is extremely "puffy", his face and all are so swollen that he cannot hardly open his eyes. But, also I am sure they are watching and treating him for another bleed of the brain, or a blood clot would be my guess they would be concerned about now... so please continue to say prayers for them. As I said he and his wife have been "clients" now for over 10 years. Yet, before that Jim and he were friends at least 7 or more years before that. They own an online retail store, and he also has a business set up on E-bay. So that makes this even much more difficult. They were kind of "a family" business and needed to ship out parts daily all over the world. So, his wife is probably just in a terrible state trying to keep up with business and feeling badly she can't be with him all the time also. AGain, much like Jim and I a year ago. I needed to be home taking care of things here, and there was so much to make sure was taken care of after the accident, and then split my time being with his in Dallas at the hospital also. It certainly was not a great time in our lives, and in all honesty, things will never be the same for us. It has really taken its toll on the both of us in so many ways... more than you can know... and more than what we even thought it would. As I had said we would have to find a "new normal"... well that new normal changes from moment to moment. Between my own health issues, and all I have to take care of daily, and then Jim's lack of being able to do so many things, and his disability also, we both are truly at times on overload... I find us sometimes going for days and not really saying much to one another. We seem to get to a place that we are lost in our own thoughts, and tend to keep them to ourselves. I know I feel as if I am walking on egg shells all the time, and I am sure he feels the same. There seems to be "drama" about something every day... and now here I face this very invasive discograph, later in the month, again I cannot drive myself from, and then what if I have to have back surgery?? That is just another issue we face, and how we will get through that? I probably may not be able to drive for a few weeks... and who will take care of the dogs, and feeding us, and doing all of the errands and so on... so you can see, and all of you that have been through or are going through similar issues can relate....


When I think of the song by "David Grey".... that is how I feel these days... "It's not easy to me... me"....