A New Book - and Our Immune System A New Look (and the drama of being a woman in her 50's)

http://www.nytimes.com/2013/10/15/science/the-compatibility-gene-offers-interesting-insights-on-the-immune-system.html?ref=nicholaswade&_r=1

I found this article interesting and thought I would share with you. I am extremely busy this week, although I feel I have gotten nothing done. I  try to get here to post and dammit, there seems to be always something else to do, look up, and it just goes on and on.   With the weather changing I woke up to a "crick" in my neck and my entire left shoulder (OMG NOT THIS ONE!!!) in just a stage of almost hurting enough to make me cry! I feel like we must have a cool front headed this way. I have had such great success so far, so good (cross my fingers and toes if I could) since the 2nf Rituxan infusion, am I so prying I am able to continue to be as least that much free of pain, (never all of it is ever gone), but also some of the daily stiffness had diminished until this a.m. 

Of course the (OMG) above is because even though my left shoulder did have surgery on it,several years ago, I have been extremely fortunate that it has not given me much hell. Even my left elbow, which in MRI's show to be just a freaking mess (I had surgery on it in the late 090's for a severe tear, and it is torn again, but it quit giving me trouble,. So, I have just gone on without being concerned. Hopefully it will continue to behave, but with me you never know. None the less, I am not sure what this left neck/shoulder thing is but my hopes are it is just a "crick" and it will dissipate soon.

Other than that this week has been a conundrum of good and not good at all. I did finally go to the new "female" .... female doctor. I did really like her, so that is great news. Of course not that I want to have to see her again, but I do have a GYN now just in case I need one. I found out, that even though I had a basically complete hysterectomy in about 1995 or so, I was supposed to have an "annual" pap smear anyway. Of course I felt like a fool, because out of all the medical knowledge I try to keep up with, especially anything that involves something that effects me, I had no clue about this. Not one doctor had ever mentioned it to me. They ALL know I had a hysterectomy, and from day one, not one said that even though the cervix is all removed, that if you had any displasia from your previous pap's that you could have some cancerous cells develop where that has been taken away... that there can be a tad bit of tissue that may develop into cancer... NICE TO KNOW 20 years later!!!! And that is the "cut-off"... once it has been 20 years with all "clean" pap's, then no others are required... damned talk about embarrassed... out of all the stuff I TELL my doctors about and it seems they may not know... here I am walking around all these years and could have still gotten "cervical cancer" or even ovarian cancer (as far as I know I still have one ovary)... so guess what?? I got a damned pap smear yesterday... go figure! She said I probably would not need any more. If this one is "okee dokie" then I am probably good to go. 

Then she seemed to think that my bladder repair surgery has nothing to do with my problems now. She seems to think (this word of dread for ALL WOMAN-KIND) - that I am going through .............grrrrrrrr and I never really believed it could cause issues... Menopause.... damned not something any "girl" my age or any age wants to freaking hear!!! So here we go with "hormone" creams etc... as far as I know I cannot freaking take estrogen pills due to my previous heart attacks... but she did talk about a brand new pill out that "acts" like estrogen to help with the symptoms, but it is not supposed to be estrogen related as far as its side effects..... but before I even dare get a script (which a pill is so much better than damned creams---yuck)!!!! I have to talk to my cardiologist... no way will I risk having another MI = since I have had 2... don't need or want any other heart issues for sure... I already run enough risk with RA, Lupus etc.... all of the Autoimmune Arthritic diseases and their "mates" I have... thus adding something else to the fire, is not what I need to do. I am in the midst of looking up this new medication today... and I will post about it also.... more to come... freaking nine billion things to do today... and not enough "spoons" to do 3 of them :)  Rhia

Getting the most Quality Time out of A Doctor's Visit

There are many of us that feel when we see our doctors we are hurried through a visit, don't get to discuss all we wanted to, or get out of the office and remember you have questions that did not get answered and so forth. It seems all of our physicians now are "overbooked" and "under staffed", or they just stretch themselves too "thin", thus we don't get the undivided attention we want and should have when visiting our doctors office. Here is an article about how to make the most out of your doctors visit.

Before I post it, I wanted to give you a few of my tips, even before I read the information. :) I ALWAYS go in with a LIST! I first of all, carry lists of my current medications, my current doctors with phone numbers, addresses, and FAX numbers. I carry a list of EVERYTHING I want to speak to the doctor about, questions, concerns, symptoms, side effects of medications, new things I have read online and so forth. If this is a doctor I don't see very often, I start my list even a week before the appointment. That way I have time to "remember" all of those questions and/or comments I had been thinking about since the last visit. With the age of the internet, if I read an article, see a new medication online, or see anything I think maybe pertinent to my office visit, I print it to take with me. They may not have time to read it then, but it is there to scan over and possibly hold answers for you when they have time to read it. IF the visit is with a brand NEW physician I check to see if they have a website where I can download the new patient information to fill out and take with me. This saves a load of time for you and for the doctor's staff, and the physician. That may lead into giving you more time with the doctor, rather than filling out paperwork in the waiting area. If they don't have a website, and the appointment maybe a month away or more, I ask them if they can mail me the information so I can fill it out ahead of time. If you have had new "procedures", tests and so forth, take copies of those results with you, if possible. I try to get a copy of everything I have done to keep in a file at home. I scan them into my computer, and keep a file on my desktop. Then all I have to do, is print it, update medications and so forth. This saves YOU lots of time hunting for results, or having to wait until the doctor requests the information, thus holding back a possibly diagnosis, or them wanting you to have the test again, and so forth. Now I will post this page about their tips... I will see how closely they are to my way of trying to make quality time with my physicians or what they may also advise...

http://www.lupus.org/blog/entry/getting-the-most-from-your-doctors-appointment?utm_source=Newsletter+10-22-13&utm_campaign=Newsletter+10-22-13&utm_medium=email

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...

One Line A Day!!! Lupus...

                                     Please Help Spread The word!!!!


                                         Alliance for Lupus Research 

                                                    ALR.org

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

"Award" Winning Blog! How does that happen?

This line as a "ring" to it.... "Award Winning Blog or Award Winning Blogger"... not that an award "makes or breaks" a blog, but I had never given thought to blog awards until today. I ran across this fact on a FB page that I frequent. I had to stop and ask myself first of all, how the heck do I get OTHER PEOPLE to read my blog? I have asked people on my FB page until I am blue in the face to please go there read and comment. Of course my husband, a few friends, and a few that find me out there in the realms of "googling" may come across my blog, but I still do not have the traffic I really want to have. My blog "rings" our about autoimmune illnesses and chronic pain for the most part. I also have a touch of my own "drama" in life, which for the most part involves the chronic pain and illness I deal with. Along with that, is the fact that doctors do not (in general) have enough "education" on these illnesses. There is also not enough education out there for patients, for caretakers, and professionals, friends and so forth about these "evil" diseases that take away the very essence of who you are.
They suck the life out of you, and spit it back in your face. Whether you are talking about Lupus, RA, CFS, FM (I happen to have the opinion of FM and CFS are also autoimmune related diseases also), Raynaud's. Sjogren's, MS, Mysathenia Gravis, Diabetes 2, and this list of 100's of these AI's goes on and on.
As a "patient", "suffer"... being inflicted terminally, being saddled with for life, which ever circle you find yourself in; or whatever way you want to describe yourself. This "nomination" called "Autoimmune Illness - Chronic" means that you have been "signed up" (not because you wanted to) for a life long, eternity of many, many symptoms, diagnosis, tests, doctors, quacks (at times), blood work, needles, IV's, possible hospitalizations, possible surgeries ( i've endured well over what I can count on my fingers and toes), massive insurance bull crap paperwork, more medications that your stomach can hold on many days, and endless lists and lists that you take to every doctor you see. Believe me, with one "bad" brain fog day at a doctor's without a list of medications, new procedures, new tests, blood work, Ct's, MRI's, surgeries and other new doctors, you will never remember or have enough room on their forms to write it all down.
So, now back to this "Award" winning blog! What do I do? Do I "advertise?" I already use the social media scene, Facebook, Twitter, of course my blog, which also posts to my Amazon.com Author page every time I post something new. I have hundreds of FB friends. Yet, trying to get them to the blog is like giving medication to a puppy... almost impossible. Why is that? I think I give them "too much information" on FB. So, they just avoid wasting time on my blog. So, maybe I should NOT say much on FB, but just post all on the blog, and a link on FB where the latest and greatest out of my brain fogged mind is written.

I don't have to have an "award". But, the idea of it sounds wonderful. So, what do I do? "Google" about "how to have an award winning blog".. Ah, and there it is... knowing people, social media, putting your blog information everywhere that is relevant or possibly irrelevant also.... anyway, anywhere you can get it out there for the world to see and read hopefully...

All I can say is, "I WANT ONE!"  Can I make "this one" Award Winning? Good Question.....