The #MIT 2016 Medical Grand "Hack-A-Thon & a One Minute Video of What YOU FEEL May Help to Change The World of Health from Today - April 29th thru May 1st 2016!

Here is the initial page that tells you what type of "video" they are looking for. It needs to be of course about something in the medical world, that you feel would be of a HUGE Benefit to "change some course of action in our realms of the medical issues today". Only a minute long, and it could be exactly what may bring great results and help to move forward a positive force in the Medical World!

Here are the links:

http://www.2016grandhack.com/

Here is the U-Tube Page:

https://www.youtube.com/channel/UCrzUtRGswcsYvjvYn-hxSYw

Here is a snippet of information from the main page to help you understand what they are looking for! This could be FUN! I just have to make sure I have my "face-on" LOL... in other words look "okay for in front of my camera" before recording it!

Let's see how many can put "their face on in the realms of Medicine" and make some incredible changes. After all PATIENTS MORE THAN ANYONE UNDERSTAND WHAT CAN CHANGE TO MAKE THINGS BETTER! 

 

 

 

"New Way" of Asking about a Patient's "Pain Level"!

I have often wondered why with all of the medical knowledge and technology we have, why someone has not invented a "new type" of pain scale.

This "1" to "10" is so totally "not really" giving anyone a true look at what a patient's pain truly is... I mean what is a "3" to someone, versus another it maybe an "8"?

If there were another way to "give someone an example of what those numbers actually meant" then I feel our medical professionals would also have a much better understanding of what that individuals pain level is. In fact just this week, Home Health Care's Nurse that came over to see my Mom for the 1st time asked her "pain level". Well, 1st of all, my Mom just over the past 6 months really began to have "serious daily chronic pain". Up until that time, she was not even sure what that "1 to 10" was. Sure, it is on the walls at the doctor's offices, hospitals and you are always asked, BUT still for someone especially in chronic pain, it can be baffling to describe what that means to that person,

So, I read an article just this week and it had a posting of a brand new way, of taking that 1 to 10 and putting "real life" examples to it, that most can relate to. Here is the chart below:

This was put out by the American Chronic Pain Association and is definitely a much better way of people stating what their pain level is, and what pain level "they" can "live with"....

Plus those with chronic pain, really do go through most of these examples throughout any one day, week, month, and year. In one day, there are times that I may feel like a "6".... but within hours, that may change for a number of reasons, and go to a "2".... and I am willing to bet MOST of us with all these different reasons and types of Chronic Pain will feel the same. I am actually going to print this, and from now on, take it to any office visit etc.... when pain needs to be described. I feel by showing this to my health care workers, nurses, doctors and such, this will make much more sense than me saying I have a "9" but I can live with a "3"... well a "3" under most circumstances is TOO MUCH PAIN to have to bear, especially by the older way of thinking... and an 8 things such as childbirth, kidney stones, severe days of RA/Lupus flares and Arthritis, and depending on what I have done or not done can make that happen, yet within a day or two, I can be at a 4.... again thougH that id NOT AN ACCEPTABLE AMOUNT OF PAIN TO LIVE WITH DAILY! IF CHRONIC DAILY PAIN, PUTS YOU IN YOUR HOME, UNABLE TO DO MOST OF YOUR ACTIVITIES, THAT IS TOO MUCH PAIN TO HAVE TO LIVE WITH!


I Hope that this "New Chart" will give you a better example as how to describe "your own pain" to your doctors. I know for me, it is definitely a better system than the old way!

The Latest Addition of my Saturday Newspaper All Things from Chronic Pain to AAI illnesses, Lupus, and so much more.... great stories today!

Latest Saturday Addition of My Newspaper "Life with Chronic Pain and AAASD's"'' LOTS of great articles from Arthritis, to AI illnesses, including Lupus Awareness Month coming up, Chronic Pain Patients speaking out about the medications they need for a quality of life and even so much more! Check it out, please forward it, and sign up to get the updates daily!  Thanks to all of you, Rhia Steele "All things Autoimmune"​



http://paper.li/ravishingrhia/1438808814?edition_id=1522ce40-0766-11e6-8e8c-0cc47a0d15fd

Update of My Daily Newspaper - and also an "Update" on just how Insane" a disease like Dementia /Alzheimer's Truly is.....

http://paper.li/ravishingrhia/1438808814#!headlines

It really DOES for the most part have many articles and information relating to our AI, RA,FM,Chronic Pain, Lupus and so forth, because am able to "pick and choose" what types of information is printed in it daily. So, I have chosen the specifics of what I know many here are dealing with. 


Now I have added "Dementia/Alzheimer's" to the "pot" of things that bring in articles. Never would I have ever in my life thought that about 9 months ago, my own Mom would go from doing her own grocery shopping, driving to church, doing her own house work, cooking, and I just helped with other things... to NOW... she at times does NOT even know WHO I AM, nor that she is in "our home". She cannot go and fix much to eat, I have to make sure she eats, drinks and takes her medications properly. She cannot shower or bathe herself, she cannot clean her house... and she has not driven her car in over 2 months maybe longer, nor been to church... she cannot "operate" her oven, stove, washer or dryer, and honestly the phone (regular home phone) she at times does not know how to use it... she stays in bed more than not, and the list just goes on and on and on... of what in such a short amount of time, not just "mentally" but physically incapacitated these illnesses can be... 

I am of the belief she has a "certain" type that unlike many, starts gradually... and for a couple of years there were "signs" but to go down hill so quickly. It is a "fast type" of dementia called Creutzfeldt-Jakob Disease .... honestly I hope and PRAY I AM WRONG, because usually it comes quickly, and they pass away pretty soon for the most part, and I am wanting my Mom to go with me like we did just about 4 MONTHS ago to the Casino overnight!!!! She "cut up" her players cards and said she would never be able to again... plus she went from no cane and no walker, to a cane, and within weeks to a walker... and we have to watch her, she now has problems with balance and is a huge fall risk... she has not clue how to pay a bill, she does not even go outside, check the mail, or anything, but due to her falling right now it is best she does not go out... she has several steps down in the front to go down... 

I am totally exhausted, worn out, drained, and in almost a "state of shock"r" for the lack of a better term right now, mentally, physically and emotionally now... I have to go over every day and really should be there more, but I have of course my own home, my pups, and me to take care of also.... WE NEVER KNOW!

Brand New Clinical Trials Sponored by Cure Click One New for Rheumatoid Arthritis and Osteoarthritis, Cushings, CLL,COPD, Pediatric Asthma, Diabetes Trial Search, Alzheimer's & More coming soon!

I want to give out the great news to all of you who suffer from RA and Osteoarthritis! There are two new Clinical trial Studies, for each of these horrid illnesses.

The Information is below, and will also be on my pages of my blog around where all of the other great clinical trials are. Actually several new ones have been added just in the past week or so, including  Chronic Lymphocytic Leukemia (CLL) including a new video link below, Pediatric Asthma, Diabetes Universal Clinical Trial Search, and still there are ones for COPD, Cushings Syndrome, and Alzheimer's Mild to Moderate.

There are also upcoming new Clinical Trials very soon on other very important illnesses that plague our nation, and the world..

So, below are some links that you can go to, and find out more about whether the clinical trial is in your area, if you qualify, and also spread the word to others who maybe interested in some of these. Many people find they are better, some even "cured" by certain clinical trials, and most cost the patient nothing, and in fact many also compensate the patient for their time, their gas money and so forth. So, please take a look or pass these onto others you may be thinking would benefit!

http://curec.lk/1hKk5XN

http://curec.lk/1YGQWfK

http://curec.lk/1rfgZAJ

http://curec.lk/1QkoLgA

http://curec.lk/1VK9axV

http://curec.lk/23JLHmp

http://curec.lk/1SfAHn2 

#cushingsdisease #cushingssyndrome    #patientpower, #arthritis,  #RheumatoidArthritis, #arthritis365, #Rheum, #osteoarthritis, #asthma,#CLL

World Hemophilia Day 2016

http://curec.lk/1W9imfi

World Hemophilia Day 2016

On behalf of the World Federation of Hemophilia, please join us on April 17 to raise awareness about hemophilia and other inherited bleeding disorders. Globally 1 in 1,000 people has a bleeding disorder. Most are not diagnosed and do not receive treatment. Together we can change that. World Hemophilia Day provides an opportunity to talk to your family and friends, colleagues, and caregivers to raise awareness and increase support for those living with an inherited bleeding disorder.

http://www.worldhemophiliaday.com/?dLvEwg