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 

Another Week of an Elderly Mom, some type of "Dementia", me trying to cope and deal with her, and all of my severe pain, and missing surgeries, and doctors appts because she is ill....

I am MOSTLY on the sofa today I HOPE! This has been another week of hell... to say the least... Mom "seems" to do better on the days I go over there... but yesterday I was trying to get my yard down enough so with this rain it would not get any taller than it already was.... so between my cordless weedeater and my cordless lawn mower it was even hell with all of the weeks and it still being so wet from the humidity... I cleaned out from under my mower at least 4 times trying to clear that mess out from under it... but I got "most" of the tall stuff back and front down for now... I am paying for it today... and have been paying for it all week... I NEED THIS NECK SURGERY and now I KNOW I HAVE TO HAVE THE LUMBAR/SACRAL surgery also... I keep "putting them off" because of Mom mainly... until I know that the Nurse, and the Home Health is going to go over, and she is getting one meal brought to her daily... I feel I cannot go through with the surgeries... I feel she does NOT even grasp that I will be "down" for at least 2 weeks, I should not drive, even though I will probably have to around town... after a week, but that means I can "barely" take care of me and the pups, and I will NOT be able to lift anything heavy, or be taking lots of stuff over to her, or be able to go over there every day, for at least a week or so... after that, then I still will be in a neck brace at the very least 6 weeks maybe longer because this surgery calls for taking OUT all of the "hardware" he put in , in 2012 and redoing it plus the new issues with discs compressed... so then he also is calling for some type of "bone growth stimulation" which I gather he means on the outside, I will have to wear because due to my osteoporosis, the RA and Lupus, he fears I may have further issues with my vertebra and getting all of that to fill in and heal... which takes 6 months or longer for "my own bone fragments" to heal in the "cage" they put in and if they have to use "other types" it may take longer.... I rescheduled the cervical neck surgery for May 4th and unless something horrid happens I HAVE TO HAVE THIS SURGERY NO MATTER WHAT! I will be "well enough" to go down to Corpus Christi to what my Granddaughter graduate, and hopefully stay a day or so, then come through and stay in San Antonio for a night, and see the Riverwalk before heading home... I will have to see how well I am feeling.. with the 1st neck surgery I felt GREAT even before I left the hospital, all of the pain in my shoulder blades and down my arms was "gone" almost right after the surgery, I can only hope I do that well this time... that has been 4 years ago, and lots can change with a body in 4 years.... anyway, 

Mom is NOT EATING! In fact, I got PISSED at HER yesterday! I told her if she continues to LAY IN BED, NOT EAT, NOT DRINK (AN NO CARBONATED ANYTHING), and NOT think she can live off of Ensure, and get back to eating some, supplementing it with the Ensure, and begin to move around some, that her "bowels" (which is what she keeps griping about) were NOT GOING TO DO RIGHT! Plus if she continues to NOT TAKE HER MEDICATIONS, she will NOT be well, or feel well. So, I MADE HER TELL ME SOMETHING SHE WOULD EAT... and I went and got the chicken strips (although fried anything she would put in her system), mashed potatoes, and a roll... plus I brought her LARGE GLASS OF UNSWEETENED TEA, and told her she needed to drink ALL of IT! She is also "dry and dehydrated which does NOT help either... she cannot expect her stomach NOT to hurt, if she puts NOTHING in it, and for her intestines to "work" without getting up moving around some and taking her proper medications... when I ask her if she too her meds... 

I get this answer "Well, I took something"... NO she took NOTHING of her regular daily medications, they were in the pill box on the table! Plus she is drinking milk, which Mom NEVER drank milk or ate much of anything with "milk" in it.. SO I TOLD HER SHE COULD BE LACTOSE INTOLERANT" and may not even know it... because up until the past month or so, she never ate much cheese, never drank milk, never ate much of anything other than breads, bisquits, etc... other than that not much dairy stuff... and if I take her to a doctor he will basically TELL HER THE SAME THING I AM SAYING... she has to EAT some, TAKE HER MEDS AS SHE IS SUPPOSED TO, get UP and MOVE, and quit laying in that bed 24 hours a day... and LAY OFF THE COLA'S AND THE MILK... 

I told her to drink water, drink "green tea" some, but nothing dairy, and nothing carbonated at all, no coffee, nothing with caffeine in it, and continue to drink the ensures but EAT WITH IT! Anyway, when I left yesterday afternoon, she had taken all of her medications, she DID EAT SOME, and of course she can't hold a lot at a time, because she is NOT eating.... and she was drinking the tea, I left a pitcher of water and a glass there, and gave her one pain pill. 

Then I told her after that pain pill begins to kick in to get up and quit laying down all the time... to at least move around to the kitchen, get up and sit in her chair in the living room, but MOVE AROUND SOME... and today through the next several days our weather is supposed to be HORRIBLE, THUNDERSTORMS, FLASH FLOODS, HAIL... no telling what from today through at least TUESDAY.. so I told her I was NOT well either, I've been in pain, unable to sleep, my stomach is not the best either, but mine is nerves and stress more than anything, and the nurse and the aid are supposed to start next week, but I prefer they not come until our weather is a bit more stable after Tuesday or so... I will NOT get my car out in possible hail if I can avoid it.... anyway, I had to get all of that off my chest., it hurts so bad to sit here and write dammit, and I need to write and do some things online, but it is hell for me to sit here very long... keep us in your thoughts and prayers... it is going to honestly take a "miracle" I think for her to get "better".... Hugs, Rhia

Saturday's New Addition of my Newspaper "Life with Chronic Pain and AI Diseases" - Great info in here this morning!

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

MORE CRAZINESS INVOLVING the CDC and them NOT WANTING DOCTORS TO ASK A PATIENT ABOUT THEIR PAIN LEVELS AS FAR AS A 5TH VITAL SIGN!!!! JUST PURE INSANITY!

Please read and sign the petition below to President Obama and how you feel about this Opioid bull!!!!


http://www.medpagetoday.com/PublicHealthPolicy/PublicHealth/57336?xid=nl_mpt_DHE_2016-04-14&eun=g773630d0r



This is titiled "TO STOP DOCTORS FORM ASKING ABOUT"A FIFTH ISSUE WHEN YOU GO TO YOUR PHYSICIAN, AND THAT IS ASKING ABOUT YOUR PAIN, AND PAIN LEVEL!"

http://www.medpagetoday.com/PublicHealthPolicy/PublicHealth/57336

Talk about another load of CRAP!!!! If a patient comes in with anything that a physician KNOWS causes pain, why would they NOT ask the patient what their pain level was, had been and what is "tolerable?" I am SO SICK of the CC, the government, Congress and all of these "opioid fearful people causing havoc for us Chronic Pain patients who like myself when I go to my Rheumatologist Friday, HE SHOULD want To KNOW my PAIN, then, the past few months and what is TOLERABLE? How do we or HE know if my MEDICATIONS ARE WORKING? If he does NOT ask the Questions about pain, the inflammation, and so forth he would NOT know... this is simply ridiculous!

This is purely incidious! How can a doctor NOT ask a patient who comes to see them especially with any illness, whether chronic or acute what their "level of pain is" as a "vital sign"? In the first place, if you leg is broken, or you are having heart problems such as a heart attack that in itself can cause PAIN!

 

Then take Pain Doctors who see chronically ill pain patients, or like above my Rheumatologist who bases a portion of their "diagnosis" updates on how a patient's pain level is, whether worse, better, the same, and so forth... I swear with each day, and each article I want to fly to Georgia and tell the CDC, along with being in Congress, my story, then ask them, HOW LONG THEY WOULD GO WITHOUT ANY PAIN MEDICATIONS IF THEIR SITUATION WAS LIKE MYSELF AND MANY OTHERS? If they have a loved one that is in severe pain from a spinal injury, or chronic severe disease, or has Lupus, RA, and even osteoarthritis, as my Mom can testify lately, causes her SO MUCH PAIN, without a pain pill, SHE LITERALLY CANNOT GET OUT OF BED AT ALL, PERIOD! I felt she may "pass away" on Monday, because I got there and she was in so much pain, AND APPEARED TO BE SO ILL, I FELT SHE WOULD NOT MAKE IT ANOTHER DAY!

I GAVE HER, her pain medication properly, her other medications for her blood pressure and so forth, and made sure she had some beside her with direction on when to take them, and by TUESDAY, she was UP AND OUT OF THE BED! Yesterday, she was up and able to do a "few things" rather than be CONFINED TO A BED! So, I want the CDC TO EXPLAIN WHY I WOULD ALLOW MY MOM TO SUFFER NEEDLESSLY TO THE POINT SHE WAS CONFINED TO HER BED, WHICH WOULD ONLY CAUSE MORE HEALTH PROBLEMS, AND POSSIBLY SEND HER TO THE HOSPITAL, RATHER THAN MAKE SURE SHE TAKES HER PROPER PAIN MEDICATION????? I am SICK TO MY STOMACH, AT THIS CRAP OVER ABUSERS, AND USERS... WHO FOR THE MOST PART BY THE MEDICATIONS VIA THE BLACK MARKET, OR FROM OVERSEAS, AND NOT FROM A REPUTABLE PHYSICIAN! 

THOSE THAT SELL HEROIN, ALSO HAVE THEIR HANDS ON EVERY TYPE OF MEDICATIONS, WHETHER THEY BE OPIOIDS, AND DOWN THE LINE... AND THEY CERTAINLY ARE NOT GETTING THEM FROM A REAL PHYSICIAN... THEY ARE GETTING THEM THROUGH SOURCES AND SELLING THEM ILLEGALLY TO THOSE WHO CHOOSE TO ABUSE!!!!!! 

I want to SCREAM OUT to these fools that THE MAJORITY OF US ARE NOT ABUSERS! We are people that NEED TO BE OUT OF THE BED AND LIVING OUR LIVES LIKE MY MOM! AND, our medications do NOT REMOVE ALL OF THE PAIN... but MAKE IT TOLERABLE ENOUGH TO GO ON for the most part. I STILL LIKE THIS WEEK, HAVE MY DAYS THAT THE WEATHER, WHAT I HAVE TO DO THAT WEEK, from TAKING OUT THE TRASH TO THE CURB, TO SOMETIMES JUST HAVING TO RUN TOO MANY PLACES FOR ERRANDS FOR MY MOM AND I... AND IT WILL PUT ME DOWN FOR A DAY OR TWO, OR THREE... BUT I CAN TELL YOU I would be DEAD, and in ASHES, if I HAD TO LIVE EVERYDAY IN THE SEVERITY OF PAIN with NO medications! There is NO WAY MY BODY could WITHSTAND THAT SERIOUS AMOUNT OF INTRACTABLE PAIN!!! Pain EFFECTS YOUR HEART, AND OTHER REALMS OF THE BODY, and my BODY WOULD GIVE WAY, AND I PROBABLY WOULD HAVE A 3RD HEART ATTACK IF I HAD TO LIVE IN SEVERE CHRONIC PAIN EVERY DAY!!!! SO PEOPLE GET A GRIP AND LEARN THE TRUE FACTS OF THE STORY... WE KEEP HEARING "ONE SIDE" AND NOT THE OTHER......

 

 

 

 

 

 

A Letter to children (mine included) if something happens such as Alzheimer's or Dementia to me....

Here is a wonderful but hard to think about article with a "letter" to their Children from someone who thinks about Alzheimer's and what they want to share with their children....

https://chermor2.wordpress.com/2013/08/21/what-ill-say-to-my-children-if-im-diagnosed-with-alzheimers/

And after witnessing what this horrid disease did to my Granny, my Papa and some with my Dad, and now what it is doing to my Mom at such a rpaid rate... a woman that just 7 months ago was just waiting for my two abscesses to get well enough so we could go to Winstar for a night, that now cannot turn her washer, dryer, microwave, TV, or just about anything "on" or use it... has no clue how to "drive" her car, & cannot recall how to take her medications, but also I have watched her go down in physical appearance, she is shriveling up to nothing, she barely eats, but will right now drink the Ensure's and drink Diet Drinks, and she NEVER used to like any type of soda that much, she has not put on "street" clothes in months, she "cut up" her card to the Casino, lost her SS card, her Medicare card, 3 credit cards within 2 weeks, can't pay a bill, or make out a check, has no clue what any of her bills mean, and even though I have just about all of them on auto pay, two of them I am going to have to put on just emailing them to me, she was almost late on one this past week. I did not know she got it in the mail, and finally she happened to show it to me, many days she is almost bedridden, thank goodness yesterday was BETTER, for a change... she was up and out of the bed yesterday, and was "more alert' and understood more, although again, I had to start her washer, then put the clothes in the dryer.... she thought her money was "running low" and I told her Mom, you are NOT spending any money, other than your regular bills, so nothing is wrong with your finances... she cannot recall the day, month, or day of the week most of the time...

 I have never seen her home as in a disarray as it is now... and even her, she no longer barely cares for herself in appearance, and I feel does not care to.... anyway that is just a few things that Lisa Lisman Walker, you totally understand and more, and you helped me so much... I am now more aware of why or why not on some of the things she is doing... plus Mom is also in chronic pain too... I feel it is her lower lumbar spine, plus arthritis in other places also... she had it already in her hands and so forth, but with her back, and she has some stenosis, some discs that are not good, and bone spurs etc... but the only thing they can do is give her medication... they did one round of injections, but unless she gets a bit better mentally, I do not think she would even think about going back for those... and she cannot take NSAIDS due to kidney functions... so she will be on medications the rest of her life... and if she does not take them as she should, then it puts her in bed worse due to the pain.... 

SO, THE MESSAGE HERE IS... this "letter" is also to my two children Amanda Batson- Matheny and Jason Harber - I will write you both to tell you many of the things this woman says in hers... IF I EVER GET THIS HORRID DISEASE... just put me in a special "home" for these types of patients, especially when I am getting this bad... because I NEVER would want either of you to have to deal with me in this capacity... I am trying my best to keep Mom at her home, and feel it is "too late" to try and "build on" to put her here with me... plus I feel she would not be happy, if we did... if I can keep her in her home as long as possible, with the help of Home Health Care, Meals on Wheels, and myself, then I shall do that... but I want you both to be able to always LIVE YOUR LIVES...Mandi, with your family, and Jason, you also... you have a life ahead of you, and you may too have a wife, and someday kids if you chose that route, and I do not want either of you to have to deal with what I see and hear daily. I want you both to remember that I love you both too the "moon and back" twice, and that if it came to me being like this, I still love you and I would understand if you could not yourselves take care of me... do how I am doing Granny, and let me stay with my own home and puppies, as long as I can... and if with help from Home Health care, and so forth, I still cannot be "alone" then I want you to put me where I can be cared for, but not have to be a "burden" in your lives.... I love you both and miss us not being close, "physically" as to where we live, but that does not change the fact that I love the both of you more than life itself.... Mom Rhia Steele "All things Autoimmune"