Smiles on the Outside Sometimes May Not Mean Smiles on the Inside!





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Moving Right Along Trying to Put Medications in Place for Lupus

http://lupusresearchinstitute.org/lupus-news/13/10/15/positive-results-clinical-trial-testing-lupuzor


This is incredible news! Once again great things are happening in the world of Lupus, why it occurs, how to possibly "kick" it with new medications, and research in such a huge dimension! It thrills me to see this, not just for myself, but for the thousands of others suffering needlessly from all of the symptoms and other "co-ailments" that go along with it.

More Incredible News in the Realms of RA and New Treatments

Many of you have already heard of Simponi. It is one of the latest "biologics" on the scene as far a Rheumatoid Arthritis, infusions, injections, and the like. We have several that you can now give your own self an injection at home weekly on the majority of them. That has made all of these much more appealing so you don't have to make trips back and forth frequently for infusions.

I recently went on Rituxan. My Rheumatologist and I had discussed it for over a year, before we took the plunge. But, I had already tried Humira for over a year, had tried Orencia for several months, and I still had severe pain, and what felt like my feet, ankles, heels, fingers and thumbs were just degrading daily. The pain had gotten so intense, I feared we would not be able to get it under control. Lord knows I take enough medication for various types of pain, plus I have my pain pump that is internal. That sucker still has to be refilled about every three months. Due to my insurance just jumping off the roof in pricing it almost would be cheaper for me to take pills. But more than likely I would never be able to get enough meds in my system to do enough good on my body to stop the pain. The pump alleviate's most of that. Since the medication in liquid form goes directly through a small catheter to my spinal fluid, the medication goes straight to the part of the brain that needs it to get relief. Thus it takes a very minute amount daily to get that relief, verses me having to try and keep up with, and take on a daily basis several pain pills at different intervals. So, for know i will say due to my situation, the pump was and is still the answer. Now don't get me wrong, it absolutely does NOT take away ALL the pain, nothing does. But, it sure resolves the fact that I am not "out of it" or groggy and so forth. I have no side effects as you would with it being orally taken.


Now as I said I got a notice this morning via email that Janssen Biotech, Inc has just came out with a "new" type of the medication called "Simponi Aria". If the Rituxan for some reason decided to not work, I would definitely look into this medication. The link is below:

http://www.simponiaria.com/?utm_source=3504&utm_medium=email&utm_content=simponiaria.com&utm_campaign=august_2013

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

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.....

(IFAA) International Foundation Autoimmune Arthritis Advocacy Volunteer

I am so excited about my latest venture in the realms of advocacy for Autoimmune Illnesses! I met this incredible lady through a friend of mine about 5 months ago. She is just an amazing, energetic, ball of fire, that has really put together an incredible Foundation for Autoimmune Arthritis on the map! Tiffany Westrich is also a sufferer of RA (Rheumatoid Arthritis). She also found out after several years of not knowing what her diagnosis was. Like many of us who have wandered around in the dark sometimes for what seems like eons, not really knowing what the heck is wrong with us. Then finally you KNOW! And you are actually RELIEVED to know something is REALLY WRONG! How crazy is that??? But, it is true. Many of us go, in fact the majority of us go for years, through test after test, doctor after doctor, diagnosis after also the terms, you are a complicated patient, you are difficult, we are not sure what is wrong with you, and so forth... then finally the light shines through, and there you have it, you have an "Autoimmune illness"? And now, what does that mean? Since there are literally 100's of them... which one or ones is it? RA, Lupus, MS, Sjogren's. Raynaud's. Diabetes 2, and many others that come to light. As you begin to try to figure out what all of this means for your future, you also begin to see that you will almost know more through your own research about "your illness(es)" than your doctors. You will also find out having "one" Rheumatologist, Internist, PCP, Hematologist, Neurologist, Eye Specialist, Nephrologist, Heart Specialist, and that list goes on and on... any and all of them may or may NOT know what is happening to you.

Back to this exciting realm of Tiffany and her Foundation. I recently found out I could become at "active volunteer" with her. Her foundation is unique in the fact that patients, those that are ill with these diseases are the ones that really do all of the work, or at least 99 percent of it. Also, 85 percent of the foundation is ran online. This makes it viable for those who are ill, in bed, with a flare, who are not able to get out possibly, be able to be actively involved in this Foundation. It is growing by leaps and bounds, and just recently went from what was a thought of Tiffany's once she was diagnosed, to design a bracelet from a "belt buckle", and was called "Buckle It Up", to the Autoimmune Arthritis Movement, and now has became a full fledged "non-profit" organization, hence the name now is International Autoimmune Arthritis Foundation! International? Yes! She has had stories from all over the world come in about patients, many of them very young, from their Mom's and families telling about these young people and the life they live with their illnesses.

I am currently "in training" to become one of the active volunteers. It is a 3 month training period, or for me hopefully, I am "fast tracking" and will be finished in about half that time, so I can begin helping out with all of the projects, programs, advocacy, and making a difference!

I am so honored to know this wonderful woman, and hope someday to get to meet her in person. She is just a joy in my life already, and I am sure working with her will be a wondrous motivation for me.

Please take a moment and look at their new website:

http://www.ifautoimmunearthritis.org/Home_Page.html

The rest of the story, as well as all they have already done is there. I hope you get as much inspiration from it, as I do....

Rhia

Like Me - "Untitled"

I wanted to complete this before I posted. But, since everything of mine that I write is never quite"completed" I am posting this first part now... and will add as the next couple of days go by...


Maybe that is an odd way to look at yourself, "Untitled". Yet, in the past three weeks or possibly more that is just how U have felt, as if I had no title, no purpose, no meaning, and no reasoning.

I've beckoned my "voice" to give me something to write about. I have called upon my Higherpower to bring me some kind of belonging, to give me an inner hope, a ray, a glimmer, of a reason to believe in anything good in this world. Or, moreover, my own world. I know... the first thing everyone thinks, "oh, she's depressed." Well, hell, "Oh" I already know that. I have been "depressed" off and on for years. Anyone who deals with a chronic illness or the issues of chronic pain are depressed. You just can't get around it. Chronic Illness/Pain, walk, hand in hand, and side by side, together. Chronic means just that... either when you are speaking of the illnesses, the pain, or the depression. There shall be days, moments, weeks, months, hell maybe even years that you "feel" depressed. Honestly, I would rather at the very least "feel" depressed, rather than feel "absolutely nothing at all." There is the good and bad to everything in life. It just seem as of late, not just my own drama, but out nations' drama, and our world's drama continue to escalate on a daily basis.

Things here lately for me, have been more frightening that the usual pieces of Lupus, RA, Sjogren's and the other several medical illnesses and issues I contend with. I began having "symptoms" OR "side effects" that just don' add up to being Lupus or any of the AI illnesses I have already been diagnosed with. These things that are happening are somewhat either very new to me, OR they are becoming much larger in their showing than what I've seen before.

For clarity, I have had a movement disorder for several years. It came upon me in about 2007, I believe. Maybe more like late 2006. It was less than a year after arriving in TX, because we were still in the apartment and not our home yet. I had this strange occurrence one Sunday morning out on our back patio, that first of all I heard the sounds of "a very loud radio or TV station". I knew it was not ours, so I thought it was a neighbors. But, the longer I listened, it just sounded "off", odd.. so I called my husband out and asked him if he heard it. He listened for a minute or more, and said that he heard nothing like that. He said all he heard was the outside fans from the central heat and air units, but nothing like a radio or TV. He went in, and I went on with whatever I was doing, and after a short time, I began to "feel" as if I was moving. I felt like either the "world" around me was moving, like a vertigo, OR more like I physically was rotating from my waist up in a circle. I was sitting down, so from where I was sitting all the way up, I was getting to this place of making larger and larger "circles". I got to noticing it had something to do with the "noise" of the air conditioner compressors. When they were on, I would circle... I could stop it, but within moments I would start up again.

Trust...

Trust. A word that can mean so much depending on what type of "trust" you are speaking of. There is a "trust" that is money set aside often by a Grandparent, Parent and so forth to take care of a child/children after their death. They do this when kids are younger and not able to take care of financial activities, then often when they come of age are able to see over it then.
Then there is trust, in the sense of "truth". If you ask someone a question, you expect for them to tell you the truth, thus you develop a trust in that person.
Trust can be telling someone something extremely delicate and private. You tell the person not to tell anyone. You trust that they will and you expect for them to not tell a soul, unless you later say it's okay.
We trust that when we pay our bills, all of our utilities stay connected, and so forth.
A supervisor trusts an employee to do a job right.
Parents often begin to trust in their teenagers, that they will not drive and drink, they will not act stupid, and will take care of and respect responsibility.
We for the most part of us, "Trust", in the "Lord"... or the name of your Higher Power. Often our trust in "him" or "her" is one of the strongest bonds we form as far as the spiritual realms of our entity.
When we take marriage vows, those are said in trust that they will be honored, and kept sacred.
We use "trust" in so many ways, daily, for all type of things, people and situations. If we did not "trust" in others and things we would never get anything accomplished because we would be either doing it ourselves or looking over the person to see if it is correct.
Then for us as a Nation, we had, notice I sad "had" TRUST, that who we elected to represent us would UPHOLD THE TRUST THEY instilled in us when they said yes, we will take care of and represent you, as the people. Well, folks that trust has been not only cracked but shattered! I don't trust anything that comes out of anyone's mouth if they are a part of this government. The new media is almost as bad. They stir up and manipulate situations to only get us more "riled" up and thinking about ways we can "fix" it, or giving us just a piece of the story and not the entire story. My last couple of weeks have involved a great deal of trust, and trust that was broken... and this government we call Washington D.C. is a huge part of it. I am not sure they will ever regain mine back again, what about you???