Thursday, October 17, 2013

Recovery - Life long Process

I know some ill think this has nothing to do with Autoimmune Arthritis or Chronic Pain and Chronic illnesses but I know from speaking to many, that at one time or the other they used the "addiction" to squelch the pain... whether physical, emotional or mental... it "dampened" the hurt... thus this does hit home for many...


 Here is the link to the entire website and its information:

http://blog.stjosephinstitute.com/how-long-to-change/

Due to a very personal friend of mine coming to grips with the realms of an "addict" of pills (I HATE the word ADDICT but I know that really is the term no matter how WE outside the situation feels about it. So, I have also recently found out there are several of my close friends on Facebook  that have dealt with recovery and now sobriety for years. Which I commend them highly! After reading this I felt the need to put it out there, for I feel there are many of us that honestly don't know someone who can be very close to us, and addict or alcoholic, and we not know. I am so proud of this person who has been "clean" now for 6 weeks. I am trying to understand the whole thing, from why the addiction, and why "recovery" honestly is a life long process. And I know where there must be especially spouses, man or wife that would not be able to "walk" that sobriety "walk " no matter how much love you feel. It just like some of us that so "chronically ill"( of which I think of and addiction of any type to be a "chronic illness") just like a diabetic or we are... we have those that their spouse cannot deal with the chronic illnesses and they must go... even if love is there sometimes people are just not that strong.... So,  post this for those who are recovering, those that have a spouse who is trying to recover, even more for the ones that need their spouse of family member to realize their problem and take that first step...  my heart and prayers are with you and my hopes are that even though that "craving" may never truly disappear completely, may you find your life is more life now full and more "normal" than when you used those "wrong tools" to aid you to get through emotions that can be very difficult..  I hope this post may help someone else...

Along the Lines of FM and Chronic Pain More Exciting News also...

This is such a wonderful thing that is happening also. This one about the realms of Fibromyalgia and Chronic Pain.

Here is the first part of the letter I received and you can read the rest at the  URL below:

Dear American Pain Foundation Constituent,

Recently the National Fibromyalgia & Chronic Pain Association (NFMCPA) inherited the good works of the American Pain Foundation. The NFMCPA is a 501c3 charitable and nonprofit organization focused on fibromyalgia and chronic pain conditions...
                          more here:  http://www.fmcpaware.org/

Lots of Exciting News on the Homefront of Autoimmune Arthritis, including Lupus!

I have just been bowled over by the amount of research, and now clinical trials on the Lupus home front. There are some very positive things about the latest medication be tested, which is "Lupuzor". In the Phase 2 clinical trial improvements with arthritic symptoms, as well as skin rash in two thirds of the patients! So, the FDA has given the "thumbs" up on the next Clinical Trial Stage... Here is the story...

http://lupusresearchinstitute.org/lupus-news/13/10/15/positive-results-clinical-trial-testing-lupuzor?utm_source=feedburner&utm_medium=email&utm_campaign=Feed%3A+lrinews+%28Latest+News+from+the+Lupus+Research+Institute%29

It's amazing to see us move from the very first "Lupus" medication Benlysta, and now we have several being tested. Thanks to so much grant money, and those out there doing the research, we are really making progress to find medications to at the very least halt some of the symptoms.

We also have even more news in the realms of research and a "genetic" link to as to why are antibodies do as they do in the Lupus illness. Two of the researchers has been making headway by leaps and bounds in the position of giving Lupus patients a more "personalized" way of treating them, along with more information These are both ground breaking scenarios and they both have won the award for 2013 Distinguished Innovators Awards Support Large-scale Novel Studies to Find Root Causes that Can Drive to a Cure. 

These are the two 2013 award recipients are David Tarlinton, PhD at The Walter and Eliza Hall Institute of Medical Research, Australia and Kenneth Smith, MD, PhD of University of Cambridge, Great Britain.

Here is a link to their further research that may change the face of Lupus forever...

http://lupusresearchinstitute.org/node/1691?utm_source=feedburner&utm_medium=email&utm_campaign=Feed%3A+lrinews+%28Latest+News+from+the+Lupus+Research+Institute%29





Bear With Me - Sometimes The Brain Fog is More than I know...

LOL!!! I have to laugh at myself. As much as I know about e-mail, web sites, URL's, design, development, and all about anything internet wise... I just learned something "new" to me.  I have honestly "Not" learned all about "Google" + and the circles, groups and so forth as I should have. I began using Google" mainly due to wanting to start a blog. Rather than continue to post so much about the Realms of Autoimmune Arthritis, and Chronic pain issues on Facebook; I wanted to "blog" it and give a wide array over the world a chance to view what I write about. I know I can do that on FB, but I just feel a blog is much more "personal". Thus I began using "Blogger" several years back. Well, then of course I figured out there was "gmail" and I set up an account. It never dawned on me that it being an
email account, meant that all of the "comments", posts etc. on "Blogger" would go to that email address, until this morning!! All this time I have been "manually" going to my blog and viewing answering, comments etc. Well idiot me, "I am just a tad bit slow" ..... finally had an amazing brain happening, and it dawned in the light that everything was going to an email address THAT I NEVER LOOK AT!!! So, I really hate to admit something so ridiculously stupid on my part. But, for me an "Email" address was not what I was looking for back then, it was a "blog" that suited my needs. Now I kind of think I wished I would have done a "Word Press" blog, but I figure they are all about the same. I just hear a great deal about Word Press and wonder why the ordeal is about it.

Anyway, I truly belive I need to "update" my own "mind" about Google" circles, and remember to check my email here OR send it to one of my other email addresses so that I KNOW when I get posts etc...

Tuesday, October 15, 2013

One Line A Day!!! Lupus...

                                     Please Help Spread The word!!!!


                                         Alliance for Lupus Research 

                                                    ALR.org

Saturday, October 12, 2013

Question??? Has anyone else had something like this??

I have developed a "new" problem, or I think it is potentially a problem. I have not mentioned it here, but now it is really beginning to scare me. About 3 months ago, I began to notice that it felt like I had a "lump" on my left lower abdomen. It kind of felt almost like it was "swollen". My right side is flat completely, so I noticed it because it was so puffy and my right side under the pain pump is so flat. I've been to the doctors, and even my PCP since it came up and I did not say anything. I have kind of blown it off until the past few days. Now it seems to be an oval lump that is getting larger I think. It seems to be protruding out more away from my abdomen and I can see it plainly in the mirror. Jim said he sees it also, so it has gotten bigger. I really don't know what to do. I have researched it, and it could be a number of things. I think I am just fearful about seeing the doctor about it... so I have just not said anything... has anyone else had something like this???

When you are "touched" by an "Angel of Inspiration"

Living with Autoimmune Arthritic illnesses can bring you down to your knees in many realms. Whether it be physical, mental, emotional, or all of them combined, it can be difficult to find "inspiration" to aid you in finding your way out of the "darkness" of these awful illnesses, and back into the light and fight.

Well, I have met someone lately who has done just that for me. This lady is such a blessing. As ill as she is with RA, she refuses to let it interfere with the tasks of life that she has in mind to spread awareness, to bring about patient centered research, to be a huge advocacy voice, and to include patients to do this research, run this global foundation, and bring aid to all around the world. Just when I felt I had lost my own way through the pits of illness and what it has done to my life lately... taken away everything that I felt like I was doing to help others, and honestly made me feel that I just needed to shut up, get off line, and stop writing.

I got to meet Tiffany Westrich-Robertson through a mutual online friend. Actually I have also met him in person. I had been reading some of his posts and decided that he was helping a FB community to really provide awareness about AI Arthritis and other AI diseases, and how they so often overlap one another. Well, I found out after just a few moments that Tiffany and her activeness and advocacy was much, much more than just Facebook oriented!

The more I read, the more I wanted to know. The more I knew, the more I wanted to help this incredible lady with this foundation. After a few weeks of really getting to know the whole story of how all of this came about, and how quickly she has grown into a non-profit Foundation to do just what I love to write about and spread knowledge about, my hopes were there would be some way I could be a part of her tremendous important work.

Thus I have! I am taking "classes" to become an "active volunteer" for the "International Autoimmune Arthritis Foundation" or "IAAF". The URL where the new website is can be found at:
http://www.ifautoimmunearthritis.org/Home_Page.html


Please take a look and you will also find inspiration and a renewal of hope from her amazing story.

I certainly know I have. :)

Rhia