Cure Click - New Clinical Trial - Mild to Moderate Alzheimer's

 New Clinical Trial by Cure Click for Mild to Moderate Alzheimer's

http://curec.lk/1Pt53Dp

 

#alzheimers 

#ClinicalTrials 

#ALZ 

#dementia

 #ClinicalTrial

 

More News You can use - an article about what a patient with Lupus wished other people without it Understood and more...

I began this "daily paper" and it is based on the information that I would like to share with others. Health, Technology, sometimes specific information about cancer,Lupus, RA and other illnesses... but usually a couple of times a day I refresh it so the latest news comes up when someone reads it! I've not said much about it yet, since I was trying to get a feel for if it would be something worth my time... and now after several weeks, I do feel it brings forth some very interesting information that is specific and pertinent to what I want to share with my family friends, and readers, and of course now my blog people! So, there has been an add for it on the right side of my blog for awhile, and I decided to post a blog post about it now, so others can see what it is like, and see if some of the information is helpful to you! The link to the latest addition is above! Please tweet, or share it if you feel you would like to pass it on, and if you want please comment so I know how you all feel about the articles.... more to come soon Rhia

IF my typing is "off" I broke a pinkie nail off below the quick yesterday evening closing my back fence! So, I am trying to catch any thing I misspell :)   )

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

What "Out of the Mouths of Babes" Taught Me this Morning about Lupus and Advocacy!!!!

I have to post this in regard to ALL of us EFFECTED by LUPUS!!! My daughter called a little while ago, as most know she lives about 8 hours away around the Corpus Christ area, and she was talking about Selena Gomez having Lupus. I told her I had just began to read that, and she said that the woman she works with, has a son who is 24 years old, and he was diagnosed with Lupus... recently he almost died due to it almost shutting down his kidneys.. and then "out of the mouths of babes comes" This is not a "rare" disease, it effects so many and there needs to be much more awareness about it!!!! As I almost fainted because of course here I am her Mother who has it among other A illnesses, and of course I am a huge Advocate for Lupus and RA...Sjogren's and so forth. So, the "point" here it dawned on me, that first of all of course she knows that I have Lupus, but her thoughts have been it is a "rare" disease, and she knows that I help to spread awareness and then it dawned on me - 



UNTIL WE make LUPUS a COMMON HOUSEHOLD TERM like CANCER - never will all of our advocacy be enough.. even those out there educated about it, with a family member with it, like a Mother, and all she knows about me, it still to her seems to be a "rare" issue - then when she said, but Mom is is NOT - the news always makes it sound like some "rare" disease but it is far from being rare... it touches MANY people's lives daily and then she said and they give "chemotherapy" medications for it - that Selena Gomez is on a much smaller dose, but it is a "cancer" drug that is used"- now my kids know that I am on medication and neither of them live close enough to "see me" when I am ill, or see what the doctors say, and so on 0 but of all of the advocacy work I do- I "missed the boat" in telling my own daughter that I am TOO on chemotherapy type medication just also in a much smaller dose.... I felt as if in my own way, to those closest to me, I have FAILED miserably in my "activism" and voice for these diseases..... again that is when it dawned on me until we QUIT having people think of these diseases as "rare" and they become as "well-known" as cancer, heart disease, diabetes etc.... then we shall never HAVE ENOUGH AWARENESS out there.... I told her that kids as young as 9 MONTHS old can be diagnosed with JRA.... and I did not have time to explain more about how that is found, but it surely hit me square in the face, that our activism, advocacy, and awareness need to be MUCH, MUCH more...Lupus as I said, needs to be a "household" word......


So, I now am even MORE AWARE that we need MORE AWARENESS! All too often these types of illnesses are considered "rare" yet as we know now, daily, we hear of many, many more cases, and people that have it Lupus, RA, Sjogren's and such for YEARS and they do not get diagnosed until after they are much more ill that they should have to be!


This to me is just NOT ACCEPTABLE and it should NOT BE acceptable to any of us.... whether you have Lupus and so forth, or a family member with it or a friend, and so on, awareness is they key to finding a cure, a reason for, how to STOP LUPUS before it attacks someone so young, that their kidneys fail..... Her comments to me certainly gave me chills down my back, to think I was diagnosed about 2009 or so with Lupus, RA, etc... and even though I have made it very well aware to both my kids and my Mom and other relatives, friends and such... and even put my heart and soul into all of the Advocacy I can, it is NOT ENOUGH1 STANDING on those White House Steps in 2014, and telling CONGRESS having these disease is NOT ACCEPTABLE and yet each day we grow it seems almost further from education people about this not being some very rare something, but it is a part of MANY and THEIR EVERYDAY LIFE!!!!!


I have to keep DIGGING away and trying to do all I can to spread information about Autoimmune illnesses and just how deadly they can be.....

WE must ALL do so!

 

Awesome News From the AF and on Capitol Hil in Californial - about "steo-Therapy" - A "step" in the right direction for California!

http://blog.arthritis.org/advocacy/ab-374-step-therapy-arthritis/

Chipping away at the issues that keep us from our medications due to "step therapy", Pricing and much more!!! This is certainly a Victory!

Tips on How to Share your "diagnosis with family, friends, the public and so forth - These tips may help in any type of chronic illness or pain issue, not just autoimmune

www.rheumatology.org/I-Am-A/Patient-Caregiver/Diseases-Conditions/Living-Well-with-Rheumatic-Disease/Sharing-Your-Diagnosis-with-Others

The above link comes from the Rheumatology site and it gives you assistance on whom, how to, what to, say or maybe not say about any illnesses such as RA, Lupus and other autoimmune issues, but many of these same tips, when you have an "invisible illness" especially could help you also.


I know for many, they feel an isolation, a coldness from others, when they explain being "chronically" ill. Some want to try and put it off to you just being "lazy", or to use as an excuse to do or not do something. Others thing you are just faking it, or that it is a way to gain attention... all of which is total bull, but I can attest that even DOCTORS can give you that feeling. In fact just last week, after being ill for months with other issues, and feeling as if I had a Lupus Flare coming on, that ONE DAY after an entire year of not getting to see him, but deal with his PA, and guess what? That is the one damned day, I feel "better"... and I had emailed me on several occasions about how lousy I felt and what all was going on, and yet then he walks in expecting me to look horrible and I look fairly well..... I knew he wondered if a part of me, was just complaining to complain. So, then I spent two entire days, plus even the weekend feeling lousy, a headache, a stiff neck, the mylar rash my throat feeling swollen and raw..and today Mom and I went into see our PCP.. well I did not look all that well this morning, BUT I also once again did not look as "sickly" as I had felt and been over those past 4 days... I did tell him that my Rheumy gave me the flu shot.... and i told him usually I kind of feel lousy or maybe achy a bit, but never have I ran a fever, high enough that again I was almost hallucinating... every joint hurt, my head and neck hurt so badly... and so I thought he would give me a corticosteroid injection to slow down or help this Lupus flare go away... well he said the "new" flu shot this year contains FOUR rather than 3 strains of flu and thus my body may have reacted quite differently due to being autoimmune & if he gave me the injection and the prednisone, then my flu vaccine would basically be "useless" because my body would fight it off if I took that now...

So, I have to wait at least another week, and if I still feel as if I may have a flare THEN I can go in for the injection and medication.... so now I have to I guess just tough it out, which all too often is easier said than done.....