One Line A Day!!! Lupus...

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                                         Alliance for Lupus Research 

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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???

What Do You Say... When You Feel There Is Nothing Else TO Say???

I did have a post up about this... but I decided to hold it in draft mode for a little while. I don't think I am finished with it, and I want to get the point across so I will wait...

Speaking of Medications... and Gabapetin & Thoughts...

Morning All... May I say Good Sunday Morning All... Well, for now it is good because I could get up out of bed, but I am not sure just how I truly "feel" yet. I am kind of in that foggy wave of whatever it is... the Gabapentin, or if it is the brain fog it self today... we have got rain and have had all weekend! For that we are blessed! I hope everyone is waking up and getting their bearings for the day. I know my husband did not sleep well, so he maybe sleeping in. My stomach seems to be acting up, so I am not sure what is about. But I do know I am having hell typing this morning.. I can't spell anything correctly, and I keep putting sentences together wrong, so I have to see what is going on with me. Everything I type is either misspelled or not in the right order. I still believe it is the Neurotin or whichever you want to call it messing with me... it is driving me crazy though. It happens more in the early am when I first wake up. Everything is "off" kilter. This morning it is certainly bad. I have had to go back and retype every sentence in here two or three times before I can even think about posting this or anything else for that matter. But the stuff does not bother me right after I take it, like in the few hours after taking one of the pills. It takes overnight for me to notice all of these odd symptoms going on. But what is sad about it, is that I think it maybe helping a portion of the pain... It seems it could be... I don't want to shout to the roof tops too soon...

Same Answers - Makes I guess NO Sense When You "Feel" your Life Disrputed...

More "NO" News of course....

Well, I get the same basic answers from every doctor. It is "Lupus" , yet it is more than likely Lupus mixed in with MS, RA, Sjogren's, Raynauds, probably FM or CFS to boot...IN other words THEY HAVE RAN OUT OF DIAGNOSIS on me!!! this doctor wants to order another CT Scan and I just had one in March! I know as well as him and the other doctors, a CT scan is useless as far as the brain, MS lesions, or any type of disorder of the muscles and so forth. ONLY a MRI can give them what they need maybe (some do not help at all, yet the people have MS etc) So, it is a waste of time and MONEY Those suckers cost me 200.00 EVERY time! And right now I need one on my hips, which will help with that problem. He says he thinks I have some type of "muscle" disease going on... but it is separate from the memory loss, etc... thus the CT, and then he wanted a carotid artery sonogram, which I had one about a year ago, thus I see my heart doctor Monday so I will ask her. She did the last one, and I bet she says it is not necessary. And even though I just had a entire mountain of blood work done, he wanted another test! I asked about Myasthenia Gravis and there is a blood test for it. But that means a trip to our hospital and probably another co-pay there. I am ready to call it Done, DONE DONE... I "might" have them all and guess what I am ON THE VERY MEDICATION they would use for them anyway!!! So, why the hell am I getting worse??? Again The Lupus!!!! Right now I am utterly pissed at the Wolf"!!!!!!