More News on the Lupus Front

It is very exciting to see all of the ideas, research, advocacy, and funding for even more research that is coming out when it comes to Lupus! I have gotten at least 4 emails just this week alone about things that are just incredible when it comes to the realms of Lupus!

Here are a few URL's for you to read:

http://www.lupusresearchinstitute.org/our-research/advancing-lupus-care-through-research-and-advocacy-progress-and-promise-lupus-patients

this one above is about the Advancement of Care when it comes to Lupus through Research and Advocacy. Novel research through genetics that will come to target of drug development to help in the fight of two very serious complications that happen often with Lupus, which is kidney damage and damage to the heart. As of now there are 30 different clinical trials that are going on for these two particular complications in themselves. The more clinical research going on though means the need for more patients who meet the criteria and are willing to go through these clinical trials. Several other issues were addressed, along with these, and you can read about those also in the URL above...

As with all of our clinical trials for possible Lupus medications, as well as other Autoimmune Arthritic illnesses, we must have change in the factors of getting insurance companies to pay for the drugs once they are on the market and out there for patients.

I realized through my own illnesses, the medications are extremely expensive. If my insurance decides not to pay for any of them, I would not be able to afford them myself. So, we must continue to advocate in order to make sure that we have insurance companies who are willing to pay for these medications as they are approved by the FDA and out there for patients to use.


This next one is difficult for me to believe, simply because just about any time I "flare" with my Lupus, I begin with a headache, that I often refer to as a "Lupus Migraine". It will not stop with just "pain medications", no matter how much you throw to try and stop it. The ONLY thing I've found to halt the horrid pain of one of the headaches is corticosteroids. I can get an injection of Solu-Medrol, along with a 14 day step down packet of prednisone, and about 18 hours later the headaches begins to subside. So, to say the Headaches are "not" related to the Lupus Disease and its Activity seems wrong to me. But, that is myself, and not everyone as a whole out there. That would be a great poll to take, on the average how many of us have some form of a migraine, or headache when we have a flare coming on ? It would be interesting to see what statics we came up with as far as us and headaches.... Here is the URL:

        
http://www.eurekalert.org/pub_releases/2013-10/w-hil102413.php

Lots of New News After What Sounds Like An Extremely Successful Rheumatology Meeting/New Pain Medication Approved?

I've already heard great things from the weekend's meeting of the American Board of Rheumatology. There are already many articles coming out about medications, new research, and all types of things that will probably be coming out in news articles over the coming weeks.... There is also an article in the NYT's today about a new pain medication approved by the FDA. Due to all of the controversy over the "narcotic" pain meds lately, this of course was a mixed blessing depending on which angle you look at it. My understanding is that it will have a "security" type coating built into it, or something where the medication is not good if it is cut, smashed, or so forth. I am still looking into it, but I believe from what this article says, that will be the case.... for more information see this URL:


http://www.nytimes.com/2013/10/28/business/fda-shift-on-painkillers-was-years-in-the-making.html?partner=rss&emc=rss&_r=0

Lupus Patients and Low Income/Medicaid

http://healthyliving.msn.com/health-wellness/many-lupus-patients-forgo-needed-medication-study-finds


I can totally understand this.... Medicaid is different in different states... so there are many places medications may not be affordable to someone with a low income...

Well How Long had it taken them to figure this out???!! RA Early Treatment help to cut damaging effects!!!

http://healthyliving.msn.com/health-wellness/treating-rheumatoid-arthritis-early-may-cut-damaging-effects


Good Lord, will I ever have lots to say about this article!!!

Living through a "female's" hell....

Ya know... I have just about decided to change my ENTIRE REALM of thinking when it comes to writing, especially my BLOG!!! I want to start talking and writing about HOW MUCH CRAP WOMEN go through in order to just BE A FEMALE!!! Why is it that WE THROUGH ALL OF THESE CHANGES IN OUR LIVES, from the time we are a teenager and develop "a body" and curves, to child bearing years, birth control, yeast infections, annual "exams", and every kind of extremely "intimate" piece of us gets exposed most of our lives... mammograms, pap smears, dealing with cramps, and all those goes along with that.... then you go through either a "hysterical" ectomy! if you get my drift, to hormones changes that "atrophy" things that hell you never knew you "atrophy".... I am just blown away that men... don't have to worry about anything such as any of this... oh they may "worry" because it does not "fit" their schedule, when they are "in the mood"... I spent my entire morning crying my eyes out over "creams", worrying about another heart attack if I use some of these things that should make my life a little "special" again... WE always are making a "choice"... whatever it is, our bodies go through hell and back .... and then hell and back again... I am so totally torn into shreds about all of this crap, until i can't even write this without crying... it sucks

More News on the Lupus Front...

http://lupusresearchinstitute.org/lupus-news/discoveries/13/10/24/lupus-research-institute-announces-new-global-research-fundamental-c?utm_source=feedburner&utm_medium=email&utm_campaign=Feed%3A+lrinews+%28Latest+News+from+the+Lupus+Research+Institute%29

National "Drug" Take Back Day this Saturday!

This Weekend the "Take-Back" day for all types of medications especially prescriptions that you may have that are outdated, something you no longer take, etc will be on the 26th. Here is the link for more information... by the way, this is totally anonymous. I have done it the last two years with expired prescriptions, or medications like antibiotics or something that I did not use all of, or could not take for some reason. It is a great way to dispose of these. We should never throw medications in the toliet or wash them down the drain. Our water is full enough now because of us doing that. Yet, most of us do not want these lying around our home either, so this makes it easy to get rid of them. I have some samples etc that I will take this weekend. Sometimes the doctors gives you some samples, and then maybe you can't use them... thus they are there in bottles laying around... I know I also have some Humira here that I wished I could give to someone who could use it. After my Rituxan infusion for the RA, I no longer can use the Humira injections. And they are so expensive, but I know there is no way a doctors office would give them to a patient... even though they are completely sealed. I have tried to think of some way of finding someone who could use them. I hate to throw them out. I don't think I can even dispose of those on the 26th though. I believe anything that involves syringes can't be taken... even those like something for diabetes and so forth. I will have to check. Anyway here is the link: http://www.deadiversion.usdoj.gov/drug_disposal/takeback/index.html

cont... How Does One get an "Award Winning Blog"?

I've touched on this subject a couple of weeks back, and I am still searching for answers about how I can get my blog "out there", push it so others with Autoimmune Arthritic Illnesses, and other autoimmune diseases can read it. I honestly feel like I have many things to say to those that suffer so badly from the trials and tribulations that come with chronic pain and illness. I don't want to seem like I am just "tooting my own horn", as the saying goes. I truly want to make a difference in others lives. I've always felt being online, where I can reach so many people around the globe was the way to do it. That said, I also still feel that my next book will really be one that many of those out there suffering will find solace in. I feel that when I talk about my own "journey" through the land of the lost as so many of us think we are, will help others strive on to move their own mountains.
Even being a professional web designer, where I optimized many of my husband's clients websites so they got out there and rated high on Google's listings, I still am not sure how to push my own blog. I am already on Facebook, I have my 2 books on Amazon.com, I have my blog here, I am a member of many groups dealing in the illnesses, and still I feel like I am totally stranded in a sea of "sites" so that not many get to see my own blog. Recently I got the pleasure of meeting an incredible woman that also has RA. She founded what is now a non-profit Foundation that has become famous and well known within a few years. She started out with a "bracelet" she made in her apartment, that quickly became a success in the realms of Autoimmune Arthritis Illnesses. From this incredible "Buckle Me Up" Movement that came from that bracelet, she is now the Co-Founder and CEO of the International Foundation of Autoimmune Arthritis. Talk about one incredible lady! She is also a "victim" of Rheumatoid Arthritis, which is one, of several Autoimmune Arthritic diseases that challenge hundreds of thousand's of us all over the globe. I was totally elated when I met her through a mutual FaceBook friend. Even though I have written and published two books, and am working on a third that will be my own personal saga of these forever life altering, still often mysterious illnesses, I feel I am not getting my own story our here.
I have my blog, yet even with it set to be "public" I have not gotten many followers. It is kept up, and I post just about every day, most of which has something to do with either these illnesses themselves, or the way they have altered my life. Then I have a Facebook page, am a member of several groups there, yet I feel I have "dropped the ball" as far as gaining public recognition with any of it.
As I said above, I am not trying to be "rich and famous", or try and say I am some super star of blogging and writing. Yet, I feel so deeply that my "job" on Earth as long as I am here is to reach out to others, and give them the tools, the courage, the information about all of these illnesses, the medications, new research, and the hope for a cure! If I would design my own website, I could push in with SEO. Of course many of you would not know what "SEO" stands for. It means "Seacrch Engine Optimization". I did that for clients, and it helps to push them up to the front pages of search engines such as Google, and so forth where potential readers, clients and the like can find them easily. It means the essence of a "money-making" website, making it or failing. Without your site being "out there" for people to find, even though word of mouth helps also, it is almost impossible to have people be able to get to you now in the oceans of sites on the World Wide Web...
Part of me thinks I should have stuck to web design, and just forgotten what I am trying to accomplish here. I have mulled over the facts, time and again, how one person "makes" it per se', and the other one doesn't. Why is it, one person can put one tiny 30 page "novella" out there, that really does not say a great deal, yet I have two published books, and not one person really gives a darned.
My husband says it is "money" and "status". He also says it also takes "luck". So, in other words, no matter what I put out here, whether it is good, bad or indifferent... when is comes to having lots of people "find you" it is more luck of the draw, and how many "ads" you put on your blog.
Well, I come back to the "award winning blog".... How does one get "an award winning blog?" Do you submit it, is it really because you pay for ads, it is because what I have to say is not anything worth reading... I wished I could find out the real "truth"... As I continue to reach out and find some way, some how, some truth, and some realm of getting to that place, I watch others just dance circles around me, with their blogs and the like. I am genuinely happy for them! But, I feel what I have to say is also worth people's time to read... if anyone has some kind of "magical potion" or answer I would love to hear from you.....

Sharing and Supporting Lupus Awareness!

For all that work so hard to get the word out about Autoimmune Arthritic diseases, as well as those other autoimmune illnesses, many come as a 2nd illness to the main illnesses such as RA, Lupus, or MCTD... getting the word out...

Great news for those who take Methotrexate! This is especially wonderful news for those of us who go into the doctor's office, a clinic etc... to get an infusion or injection of the medication weekly... You can deliver it to yourself at home, like a "diabetic" pen for insulin does. Here is the news report on it! This is awesome!

http://www.medgadget.com/2013/10/otrexup-self-injection-device-receives-fda-approval-to-treat-rheumatoid-arthritis.html