(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...