Showing posts with label advocacy. Show all posts
Showing posts with label advocacy. Show all posts

Wednesday, April 8, 2015

My First "Victory" 25 Chapters in my latest book written and a huge word count over 50% finished!!!!


I JUST officially HIT Chapter #25!!! In the latest book I am writing!!! I now have 47,383 WORDS!!!! I am so elated. Much of it of course will have to be gone through, spaced, and so on... going to take a great deal of going over, and over.. and then going over it again to have it to the "publication date"... But, having that much into "copy" for now is exciting!! Jim just looked up the "typical" word count for a book such as this, and it is between 80,000 to 90,000 WORDS. So, I am at my half way or more point in the writing process... I have to admit I HATE proofing!!! I get so tired of looking at it over and over.. so I always have Jim also proof it for me several times also. That way, hopefully between the two of us, it is "readable" and makes sense. I know with this "brain fog" that seems to be growing worse by the day, I tend to find myself "repeating" something that I may have written a few weeks back. Now, to "take up" for myself, often that is because some new light has been shed on the subject, or I've gotten more news, did further research and so forth. Thus I may post on the "same subject" several times. But, I do find myself "forgetting" much more than I used to just a year ago. It really concerns me... BUT for NOW I am going to feel very "elated" that I've made the half way point in my book that shall be titled "It's Not ME! It's the Disease! ( actually when we first came up with the title, we almost wanted to ad in "It's not ME Stupid! It's the Disease! Yet, I don't want to make people feel stupid or any thing like that... because these illnesses are extremely complex, and my entire reason for writing them, this one especially is to help make people understand these illnesses better.... also I am now Kicking the Can around on making this a "2 Part" book... In other words, publish this first one, yet move on forward and write #2 - like they both should follow one then the other.... I am still thinking on that one... and I'm not sure how I feel about this whole "Volume 1, Volume 2 etc ordeal... I am not a huge fan of it in the movies, and the only time I really loved it is in the 4 books "Twilight, New Moon, And The Twilight Saga, Part 1 and art 2" Those really and truly "fit the bill!" But, of course I will always be a writer and author and if by the Grace of God Go I, my intentions of course are to publish more in the future. But, I've thought about taking a stab at writing "thrillers" based on "medical things gone bad" etc... there are so many things out there now, that would make for incredible thrillers with the medical issues today, that I have really given that I very big possible yes... plus I am still writing on the "Texas Sayings" so it will of course be much smaller but I am also going to publish it too....

Friday, April 3, 2015

Sharing More About My Pathway to being An Autoimmune "Voice" Activist, doing Advocacy & being An Ambassador for AI's - A Long Journey...

I am WAITING "patiently". I am supposed to get a huge "suprise" goody box from the Arthritis Foundation. Since I was not able to attend the Summit, they are sending me my "Platinum Ambassador" certificate, along with some other things from the Summit!!! Hopefully another reusable bag, so I can "advertise" plus maybe a T-Shirt smile emoticon I hope. We got them last year, so maybe that will be with some of the rest of it... I will take a picture after I get it so everyone can see what kinds of things I got.... I am still so totally bummed about not getting to go to DC I pray and pray, I will get another chance in the future! :):) I certainly hope so... being in DC for me, is the ultimate "advocacy" way to get your message across... I did last year in 2014... and even though I didn't get to go physically this past time, my heart, soul and spirit were there and I was "tweeting", blogging and posting everything I could to help spread the word!

I will have more and better pics in a bit.. my battery on my camera needs charging. But, here is a portion of the awesome box I received yesterday from The Grassroots Manager at the Arthritis Foundation!!!! Even though I did not make it to DC this year and be awarded my plaque in person, I hope next year to go one way or the other... I was so surprised and honored to receive this!
  • I am going to post a photo a bit later of ALL of my incredible things I received from the Arthritis Foundation. I was so thrilled when it came yesterday afternoon! I received my "Official Plaque" for being a 20014 "Platinum Ambassador", a new T-Shirt from the new Summit, several buttons I can wear, a "stress" ball, an awesome "reusable" bag!! This one has zipper pockets, and is lined very well in heavy plastic, with the whole logo on it from the summit. It is really awesome! I also got the brand new 2015 Ambassador "Too; lit", which is so nice. I have it downloaded onto my computer, but this one is so cool. It is in a beautiful bound booklet, with all of the "colorful" logos etc used this year for the Summit. By the way, it is "green" this year and so it my new T-Shirt! I am just so happy I received it with a beautiful note written by the "grassroots manager" who is just a real sweetheart! Laura has been almost like a "mentor" to me in so many wonderful ways. Also, last year along the way, we became "friends". I learned a great deal about her on more of a personal level and we shared things back and forth over the year about the Arthritis Foundation, but also what we had going on more about our own lives. I have truly been blessed to have her kind of take me under her wing. She was the person that helped to get me home, in the last years Summit of 2014, when Jim had the severe and very bad car accident at the last of the Summit. Her and Chris Nieto will always remain extremely special to me on many, many ways. I thank the Lord for them each day, and all of the help. compassion, support, and so much more they gave to me during that "trying time". Those times when life can all of a sudden within a breaths space throw a curve ball at you 90 MPH, & hit you right in the gut with full force. I am so indebted to both of them, plus the Arthritis Foundation; along with several others that gave me the support I needed when literally my knees buckled under the weight of way too much "life tragedy" when I least expected it. Pam Gill from the Central AF also was a huge help, and so many of the advocates, and my "family here on FB" were here day after day during those trying times when he was in the hospital for over 3 months. I never thought our lives would ever see anything
    "normal" again. As I said before, and we continue to see it, a "new normal" whatever that might be in our lives now. Denise Tekell you have also been here to listen, encourage, support, & be such a very dear, dear friend even though you are going through a very difficult time in your own life. I admire you so very much, for the strength you show, for your tenacity to find your way through such again a time when life seems to be so turned upside down for you and your family. Yet, you always have a smile on your face, no matter the amount of pain, and of fatigue, & all kinds of health issues you are dealing with, you have a kind word for us no matter what life is also pitching at you also, at a pace so fast, sometimes we find ourselves almost unable to "dodge" it. So many of you here have lifted myself and Jim up in thought, positive light and prayers. I hope EACH and everyone of you (and you know who you are) always KNOW and TRUST we are so blessed and so very grateful to have you on our fighting side of life, when it decides to deem a rapid punch when you least expect it. As I finish up "HOPEFULLY" over a YEAR of the NIGHTMARE from the Sjogren's and Losing ALL OF MY TEETH to that horrid disease, and Hope for these "mini titanium pins" will continue to help give me the added support I so desperately need in order to hold these bottom dentures in place, only to now fight another battle of a "new pain" - well it is not so "new" but much worse than it had been in my lower back, hips and legs. I am still not so sure my hips are also a part of the problem. In fact I am going to call my orthopedic surgeon and make an appointment to see him hopefully ASAP and see about having my hips injected again very soon. So, once again I face a "new frontier" in this battle of autoimmune illnesses. They can cut you down much faster than you can get up all too often... more later...
  • I am sure (Jim and I in fact talked about this yesterday) that at times people probably wonder If I have lost my mind.... Well, I didn't have a whole lot to lose, since over the years many things have certainly waxed and waned me in life. At one time, before I got into the "advocacy" work, and before I got "chronically ill"... my "voice" in my writing and some volunteer work was for "battered and abused" women (men kids etc)... but mainly women. Due to a couple of events that happened to me as a teenager, that I never spoke of here in this town at all, along with the living hell of an extremely abusive marriage that I stayed in WAY TOO LONG, before I finally decided to leave the entire state of TX behind... and find "peace" somewhere else.. which at first I thought was Lancaster CA, then things happened, I had to move back to TX, and again put up with the mental, emotional and physical abuse of someone who was "supposed to love me".... I had a knee operated on... and when it was well enough, I moved to Seattle WA... there of which I thought I had found my "life"... and I did in many ways. I loved my job there, and I was basically more "healthy" that I had been in years and years. Then I was struck down with yet some more abuse, that I got out of very quickly. It was not long until I began to I am sure now have the sign and symptoms of what I now know is the Lupus, RA, Sjogrens and so forth ... so due to life's changing path, just as a river can change course my life led me back here, to where I grew up... and at first I was angry... I was ANGRY AND MAD AS HELL! To be quite honest. That was the last thing I wanted to do. But I did miss my Mom and kids... thus coming back was a good thing... As far as the "abuser" he wound up in jail for a long time right after me moving back. So, that kept him out of my life... and after that, he has left me, (us) alone for the most part. Thank goodness. Back before I moved to Seattle, due to mainly "hiding" to keep from being abused (I was 40 at the time) many thought I was the one insane, on drugs, etc... no one was ever told the truth at that time... i hid it, kept it inside because I knew no one would believe me then. They would assume and did, that I was the one with "the problem". Later it all came out, and when that happened it stopped many years of gossip, pain, and others thinking I was nuts. Anyway, My advocacy, writing, poetry and so forth for many years had always been about the abuse, how to get out, how to get help, and so on... then it took a new twist after I became so chronically ill. During my "research" of what all of these "diseases" were doing to my body, I saw much that "called me into" the activist work. I wanted to TELL THE ENTIRE WORLD that I, THAT WE... all of us NEEDED ASSISTANCE.. we needed a cure, a reason why, MORE RESEARCH, more of everything, and I so wanted to be a part of that change.... thus my own illness led me to this road of being an Ambassador... and the challenge of trying to "make a difference"... but when the ordeal with Jim happened a year ago, things truly changed again... what many DO NOT SEE, are the days, times, moments, sometimes a week or two, that I DO FALL APART... I do want to just say to hell with it and quit... I don't want to make another step, see another doctor, take another pill, and at times I am truly SICK OF BEING SICK FOR ONE... AND #2 i am SICK OF ALWAYS TALKING ABOUT BEING SICK!! So, I like you try to hold onto one moment, one hour, one day, one month... and step forward sometimes to an abyss of the unknown... and allow "faith" to lead me where I need to go... Even now, I know in my heart, if I ever intend of being SERIOUS about WRITING my BOOK, I am going to have to "cut back" on some of my other advocacy work... as much as I never wanted to even think that, much less have to honestly deal with it. I am under way too much "pressure and stress"... I've always been a "yes" person... someone asks me to "help" and of course I am always willing and ready to step up to the plate and do whatever it takes... but between my own "all terrain" keeper of our domain, in other words, taking care of the WHOLE HOME, all of it... and then so much with Mom, that she honestly cannot do on her own... and my own illness, I am still way too overloaded to find the time to write, to blog, and to do the other things I feel that are also my "calling"....So, as much as I don't want to, I am going to have to back out of some of the activism for now. I can always pick it back up later.... but for now, I feel my work on my book, our home, and Mom's things... as well as my own health has to take precedence over some of the other things I have been participating in... So, as in the next couple of days, I make that decision of what to "hold onto" for now, and what to "bow out of" for now... pray I am making the right decisions and I am doing what "His" Will is, not just my own... so this is a perfect "holiday" to "roll away the stone"... and find out what is "truly meant for me to do over the next year or so"... I pray and hope for guidance, because Lord knows I may mess it up on my own.... Hugs back and much love.





Thursday, April 2, 2015

The Realms of My Own Happiness #HAWMC

Check out my true happiness and happy moments below!  #HAWMC


Happiness for each and everyone in this nation, and on the planet for that matter, can vary from person to person, from day to day, and even from moment to moment under some circumstances.

It is a very interesting question that can lead to you learning a great deal about a person by what truly brings out those "giddy" feelings of being totally "in bliss"; in a complete and whole state of all being fine in your little corner of the world.

For me, of course there are different things or ideas that bring me that feeling of "glory", of wanting to smile at the world, and hold onto that "key" situation, moment, happening that brought so much joyful glee to my soul.

If I had to pick one thing, it would be having a true inner feeling of accomplishment. I mean having one of those days, weeks, and so forth that I feel I am totally finished with certain things, that I have completed the "list of tasks" that I set out to do, say for that day or week. Within that time frame, for instance, I started out with an extremely huge amount of items that really needed to be done. Whether it means, a blog post I've really wanted to write, and write well that is also received well, I've taken care of a number of things that needed to be completed at home; such as possibly baking a special cake and it turns out perfect, errands that go by quickly, allowing me to free up some time, having ALL of my household "honey do" lists (when I say lists I mean our own at home along with my Mom's usual list), and all goes as planned, no accidental trip ups, nothing else to go wrong, plans that have been made being completed, and all seems in a place of peace. That would include my own advocacy work also. It in itself gives me those feelings of happiness in the fact again, I've "conquered" the battle ahead, forged through, and completed it. I see also that others have benefited from my own ideas, and I've also been able to spread my own happiness with others. When I find that state of mind, that state of feeling whole and complete, accomplished, with major and minor items, than I am in harmony with myself. I then can justify a "day off" to the Casino with a "daughter and Mom" overnight stay. Or I can justify that I've done a great job, having freed up time to make a trip over to another town, our county seat, and shopping, possibly grabbing lunch, and finding a huge bargain on an item of clothing that I needed, or had been wanting. So, the means is the end result for me, happiness.

When I can take a look backward in a certain day, week or weeks, and watch what my jobs, errands, cooking cleaning, blogging, writing, doing my activist work all come together in a neat package that I feel I could tie a ribbon around and say,
"Wow"! I really did get so much done, had a pretty "stress less" time doing all of it, and I've given others a reason to also say, "Thank you", "Job well done", or I (we) appreciate your good attitude and accomplishment.

Although there are other things such as being able to play my drums for a short while, getting out of the house and going for a "girls night out" with Mom to the Winstar in OK, being asked to participate in something special, such as the "WEGO Activist Writer's Challenge Month", or any type of event or happening that involves me more into my activist, advocate and Ambassador dealings also gives me a sense of accomplishment, thus happiness is always the end result.

Rhia Steele
April 2nd, 2015


p.s. When I speak of accomplishment; along with the completion of a long list of things to be done, I also mean being able to not take to be concerned over my health. I am at least for a small while, free of many of the main symptoms of my illnesses have calmed and quieted down long enough for me to do those things, which brings me bliss in with all I set out to do and get done...

#HAWMC

Friday, March 13, 2015

Changing of The "Plans"... asking for positive thoughts....

Please keep "positive" thoughts my way as I try to delve into my 3rd book. I've been working on it off and on for a long while, and really began to watch it somewhat take "shape" after the first of 2015. But, I was also trying to juggle writing it, all of the errands, bills, groceries, shopping, house cleaning, cooking... and of course that list goes on and on... along with all of my activist, advocacy, Ambassador, and volunteer work. Now, I have tried to come up with more ways to make some of the daily "drum" of life, play a different tune for me. I've re-organized (or I trying to) how I deal with the daily things that all of us must do, and also be loyal to my own blog and book... PLUS remain a huge VOICE as  I feel I must in the realms of my advocacy, activism, volunteer, and ambassador work as well. I never want to "negate" how critical I feel it is to give true "voice" to those out there with these often daily, chronic illnesses, pain, and make sure I am doing my part to help in that also. So, as I try to "coordinate" more, "combine tasks more"... and give myself plenty of "quality time" to write. I can't write 10 sentences, then have to get up, leave, run errands, go to the market, do laundry, and 4 hours come back and pick up where I left off... my mind just does not work that way anymore... with all of the brain fog, as well as stress, and the "business" of life, I have to allow myself to "tune out" some of those things, and let go of some of the stuff I tend to lay way too much priority on, that I need not. I don't have to have every dish, every towel, every floor, every inch of my car.... all in "perfection" .... some of that type "A" personality, must go... I've had to face that my mind just won't and cannot deal with way too many "irons in the fire" at once. When I do that, then I am more concerned about "doing" other "stuff", then do the "stuff" I WANT and need to do... LOL... no that does not mean I am going to have bare cupboards, do no cooking, never clean, or do laundry, not do all of the daily items, but I can do them in a bit different manner, thus freeing a "chunk" of time up to write, to do my advocacy work, to work on my blog... and so forth... thus that is my plan, and goal... of course like all great ideas, that may not come to fruition either... but I can try... plus I've tended to "neglect" the fact that I am in a GREAT DEAL MORE PAIN, than I wanted to admit to myself and my doctor. There is something going on, whether related to the RA, Lupus, my hips, osteoporosis... or what ever... that is causing me a world of hurt, that was under control for a long while. So, that may mean reconsidering my "autoimmune medications"... and also opting for more medication coming to me from my pain pump, in another small increment. I had it put in around October 2010... and for the 1st year, we "adjusted" it almost monthly... then we got it pretty well working as well as it was going to.... and 2 years ago, I went through another spell, where I was in "intractable" pain... again lower back, hips, legs... we adjusted the medication then, and there has not been a change since that time. So, I did tell my specialist last time he refilled my pump, that I was "jumping up" on the scale of pain... and he did "up" it a tiny bit... which is always how they have to handle it... but even with that, I am still in too much daily pain... and even though I and everyone knows we are NEVER completely "free" of pain... it just does not happen... so... I am going to ask him next week - Jim has an appt with them on Monday, about coming back in and having him "Up' the dose again. From there, I will be probably working with my Rheumatologist on trying a different "combination" of meds for the RA/Lupus.... but I really don't see him until May... yet I can email him, and sometimes he makes changes in between visits, since he is so swamped with research, teaching and seeing patients... that our visits are usually far between... Anyway... that is where I am at this moment... and I shall put one foot in front of the other... (by the way I have MY BOTTOM DENTURES FINISHED A WEEK FROM TODAY!!!!!!)))))) THAT WILL BE A HUGE HELP ALSO.... Thanks all... Rhia Steele​

Sunday, February 22, 2015

How to find "Center" - Deal with "Disappointment" - and Feel Like You are "contributing" to Life, when AI illnesses try and take over...

Not overly thrilled this morning. My Pug woke us up about 4:00am sneezing! I bet she sneezed 25 times. I got her over to me, and pinched her nose really softly, covered her up and started rubbing her head and neck. She finally stopped sneezing for a bit, then began again. I decided to just wrap her up and put her out on the sofa, and I would stay out there with her. Then of course my other one Bubba, was crying, he wanted out there with us. So, I got him, and wrapped him up in the bends of my knees like he sleeps all the time, and FINALLY they both went back to sleep. I tried to, but then I thought it appeared to be getting light outside, so I went to get up. Then headache and nausea hit me all over again. So, I went and got the last little drink of "coke' (the original full Coke will most of the time help my headache and also settle my stomach some). I didn't have much left, so then I poured me a glass of green tea, and debated about getting back on the sofa. I had been on the run yesterday part of the day, and it was also my Orencia day. Not sure if some of that made me fatigued and not feeling well or what. Anyway, I went in the afternoon around 3:30 om and had my hair trimmed back up so it would style correctly. And she sprayed a bit of some kind of hair spray on it. I don't use much hairspray and the one I have I use mostly because I love the way it smells. But, whatever she used, really got to me. Even though she didn't put much on, right away I began to feel the headache and of course then the nausea coming. There are certain smells, even in really good perfumes and so forth, that just don't settle well with me. I guess due to having migraines all my life, and now that my stomach really acts up so much, the combination of the two just put me in a fluster last night. Then the dogs, didn't help.... having to tend to them... just like kids at times, I was up a couple of hours getting them settled back down. Now today I feel like I am paying for it. For some reason, and I am not really sure exactly why, I am just having a heck of a time "dealing" with life in general. Not feeling well makes it worse of course, but I am not really depressed, but I am just not really thrilled over anything at this moment. I think I got bummed a bit about the weather being so crappy and we didn't get to go to the Casino last Sunday, may be part of it. Plus I just feel as if everything I attempt to do, either takes me forever, or like a shower, sometimes by the time I take one, get out, dry my hair and get dressed, I feel worn out and it seemed to take 8 times longer than it used to. I think I was hoping for 2015 to be so much better than the past year. And for sure, it is nothing like 2014 at this moment. But, I believe I thought I would have MORE GOOD days, and less bad ones. I think I was wishing for the entire ordeal with the wreck to be over and done with. The thought of having to drag out this "lawsuit" crap another almost year, really is not settling well either. Even though it does not actually in many ways effect our "daily" lives, it does in others. I feel we are in a "holding pattern" not knowing what will happen if anything, wanting to get the mess over with and not have to even remotely think about dealing with a trial... that could drag things out even longer, and the longer that drags out, the less our lives feel any type of "normal" to me. Even though it has probably been more of the "economic state" of our nation that has effected Jim's clients, in many ways, I know we are losing a couple of clients more than likely due to some ways all of this effected how Jim tries to work. With all of his own pain, and dealing with his balance, he can't drive, and who knows when he might, if ever, along with all that faces us both, it just feels like we are totally unsettled every day that dawns. I REALLY wanted us to go to Vegas for our wedding anniversary. That will be in April on the 6th. It will also be 10 years of Dad's passing away on March 27th. Time flying by also really is getting to me. Each day that I don't feel well, means another day I don't get to live my life to the fullest I want to... (wow, I just have this eerie feeling of deja-vue) like I've written those exact lines before, in the exact place... wow that is a strange feeling for sure... each and every element of our lives have been ripped, torn, mangled, and we try every day to find some kind of "normal" again. Yet, there is not one thing normal about life for us really whatsoever. I am truly pissed at myself, because of all the things I've wanted to do in 2015 the number one was to finish writing my 3rd book. I find myself, either not having the time, getting interrupted with other stuff, then it takes me forever to get to where I left off, and when I finally do get to write, either I feel what I am saying is boring as hell, it's not how I want it to come out, or I am all over the place, rather than focused, or I am either too tired and fatigued, or I have a bad headache, or a flare going on... the list is endless. What makes that worse, it ALL of it sounds like an "excuse" for not getting the book written. But, when I look around at our home, all the things we need to finish, that we have not been able to, from painting the outside to finishing the floors in the bath and kitchen, to completely doing the laundry room walls, to remodeling the music room... a billion and one things we want to do, yet one or both of us physically are no longer able to do.

Just as we find ourselves in a rut, in the same old place we have tried NOT to be in, to break old habits, like for me, POSTING HERE, and just putting a link from here to Facebook. Not writing it all in Facebook. That is not how I want to do things, yet old habits just don't go away overnight. Plus "this" also is something I need to put in my book. It is how every aspect of daily life is totally surrounding, or surrounded by something to do with autoimmune illnesses. Either physically, mentally, emotionally, somehow, someway, I feel these diseases rule over my way of living. People can say, "just put that aside", do some Yoga, don't worry as much, blah, blah blah... you can bet that is all wonderful advice, but not easily followed when you have chronic illnesses and chronic pain. They are like a "plague"... they just don't "shoo" away like flies off of a pie. They mix you up in a blender, or roll you around like dice, then spill you out all over the floor and you are trying to pick up the pieces and put them back together again. Believe me, Humpty-Dumpty has an easier shot at it, than the majority of us with any type of autoimmune disorder.

I can go from feeling like a thousand bucks, to feeling like a penny in the middle of a busy road. Ran over time and time again. Worse? Not even knowing why? The illnesses, medications, new symptoms, your mind playing tricks on you? Maybe you are finally just going crazy, and insanity will be the "new black" (or possibly going to the "nuts house" in your little black dress!)

Often times I want to act as if certain things in life don't really upset me, or make me feel disappointed. Yet, inside I realize that is not true at all. I am totally disappointed with so many small things in life, that I would feel as if all I did was whine, mope, fuss, gripe and bitch if I was show to how I truly feel in regard to our daily living.

I find myself disgusted with our world in general. I am also very sure I am NOT THE ONLY one either! All over this nation, and our globe something horrible is happening. People are more disgusting everyday. When you turn on the nightly news, and 90% of it is "bad", how can you not be effected by those things? I know that as population grows, of course it seems that we have more bad than good in life. The needless shootings, looting, those taking advantage of our elderly, poor, and people that may lack the education... war, let's face it, whether (and I am to the point of being sick of hearing "boots on the ground") but if they are or not, we are still very much in a constant state of "war". Hell, we are at war all too often with our very own nation. Rather than work together for the common decency of everyone, the greed, the power hungry, non caring, lack of any morals, and horrid attitude many have for their own kind, humans, is purely disgusting. We wage war right here in our streets... What makes that even worse, is often times it is family members that take their own flesh and blood, then kill themselves. I have heard suicide defined as being a very "selfish act". I didn't understand that until over the past twenty years or so of my life. Or course it is a very selfish thing to do. If you have parent's, spouses, friends, brothers, sisters, and other family members that love you; then you decide not to deal with life anymore, and you "leave" this world in a manner of taking your own life, you have now cheated all of those that love you. No longer can they see you, talk to you, be around you... you have taken away something that was so precious to them, YOU! So, it is a very horrible way to do those that love you. I know with suicide victims, often times those people are not considering that they are being selfish, they just want to end what pain they are in.

Wednesday, January 21, 2015

"Learning" - New Words for Today - and My thoughts about a Certain Quote I stumbled upon...

Okay, time to learn words for the day! 

1)  decumbiture

The time at which a sick person takes to his bed, or during which he is confined to it by disease.

In astrology, the figure of the heavens erected for the time of a person's first taking to his bed from illness. Prognostics of recovery or death were derived from this figure.

The word 'decumbiture' comes from a Latin word meaning 'to lie down'.


2)  libertine
MEANING:
noun: A person who is morally unrestrained.
adjective: Unrestrained by conventions or morality.

ETYMOLOGY:
From Latin libertinus (freedman), from liber (free). Ultimately from the Indo-European root leudh- (to mount up or grow), which also gave us liberty, livery, and deliver. Earliest documented use: 1384.

A THOUGHT FOR TODAY:
In those parts of the world where learning and science has prevailed, miracles have ceased; but in those parts of it as are barbarous and ignorant, miracles are still in vogue. -Ethan Allen, revolutionary (21 Jan 1738-1789)

and now my own "thoughts" about the Thought for Today....

I find the "Thought for the Day" quite interesting. Being that it came from the 1700's, and at the time of course we were not "barbaric" at all, but we also were not out of the woods as far as having a good grip on large corporations, large manufacturing, or items that would make us appear to be very far on the other side of science and learning. We have always been a great deal ahead in some countries as far as our "learning curves" compared to places such as some places in Africa, or down in South America. Yet, look at "Stonehenge" and the "Inca's" and the "housing" or tiers that they "built" or the pyramids... all of those things were designed by "a learned and scientific" society. I believe that those people that built Stonehenge, or the Inca's, and many other people like the Egyptians believed in miracles, yet they also had knowledge behind them also. So, it just seemed very interesting even in the early 1700's that Ethan Allen saw that those who are more attuned into "miraculous" happenings seemed to be less "educated" than some. I guess there are two sides to the coin when it comes to scientific beliefs, knowledge, and the other side of the coin, believing more in a miracle than in it being based with some kind of real explanation. What may seem a miracle to some, can often be explained away as it being a specific answer, rather than it being spiritual or something that happens where knowledge nor science can explain it. Yet, when you look up at the heavens, can "science and knowledge" truly "explain" all that we see and know up there? Some would certainly agree that "all" things can be given explanation to, and not be done like a magical force. Yet, I think as our constant, every changing world is today, more and more even those with the most knowledge can see that some things that happen just cannot have a concrete reasoning behind them. Thus, there are other forces at work in our world that cannot be seen, touched, or felt. But, are here, and logic must fly out the window... I am sure I am not making much sense at this moment, even though I know what I am trying to say... even in the entire jurisdiction of the medical world, there are items that are just not explainable by modern medicine. We see this with physicians and in our medical domain all the time. Doctors at times admit they may not truly have a plausible "why" or "why not".

When you start to delve into our issues with chronic illnesses, chronic pain, and how many things we still have to school ourselves on, it is an endless and boundless "land" on which we stand. Even as many researchers, teams, advocates, non-profits, doctors, students, and schooling as we have to offer up the best explanations as to why some of us, especially female in gender, fall into the role of living with "autoimmune illnesses". I've often wondered "why" it is more of a "female" set of disorders, syndromes and illnesses, that do not effect the male population nearly as it does our women.
I've also pondered upon the reasons as to why my life's journey didn't take me further into the places of medicine. The medical field has been a fascination of mine since I was about 12 or 13 years old. I've told the tale often about living next door and growing up with a neighbor who was a nurse for our hospital forever and a day as it seemed. Our next door neighbor was the very BEST NURSE in her time on this planet. She is almost a "lost" soul now. I am NOT knocking nurses at all. There are many out there that do the job, BECAUSE THEY CARE! But, much like Teachers these days, between the worry of red tape paperwork, the number of horrid illnesses out there they must be so careful about, and now things even worse due to diseases out there we have no "medications" for... antibiotic resistant infections, like Ebola, and even forms of TB, Pneumonia, and others. It is a frightening era in nursing and the medical field for those that deal one on one with patients, body fluids, and everything that they could have just a tiny "mishap" and be one of those in the hospital, rather than working there.

Yet, this lady took me under her wing. She was a 2nd Mom to me all my life, from about the time I was 6 or 7, until I graduated and married at 17, she had me so engrossed in the passions of medicine and nursing that I had plans for many years to do just that. I wanted to go to school to be a nurse. This woman (I will call her Dee Ann) had 2 sons, and then decided to go to nursing school. At the time being an LVN was a good position. RN's of course were more of the "leaders" and supervisors, but being an LVN appealed to me because when I was old enough to become a "Candy Striper" I got "hands on" experience of watching babies be born, "autoclaving and sterilizing instruments", watching surgeries, caring for the newborns, and even making Christmas "stockings" that babies born on Christmas Day got to go home in a "stocking" Dee Ann and I made. She taught me how to sew, how to crochet, how to do just about everything at the hospital that she did. At the time, I was probably the only girl racking up hours and many hours at that as an "aide"... more like an advocate, or volunteer. But, I would spend my entire Summer Days 8 hours or more if they let me right beside Dee Ann, learning everything there was to becoming the very best nurse possible. There were no "disposable" instruments. Everything was sterilized, washed, and then packed in certain ways depending on what those instruments were for (an in what type of surgery and so forth), then wrapped in special wrapping and put into a very large "vat-like" autoclave. They were then in there, and steamed for a certain amount of time to completely finish the sterilizing process. Then they were labeled by date and what type of pack it was. I got to change diapers, take the newborns to their Mom's, hold them, feed them, watch them be born, and even would watch through the window of the Operating Room when they were performing surgery. Those were some of the best years of my younger life.
Why I had the notion to decide and marry so young, I don't know. Love is love... but hind sight is 20-20 as they say. I still at the age of almost 55 years old, "kick myself in the butt" at times wondering why I didn't go ahead to nursing school. Even married, I could have went. Then when I was working in the business office at a hospital for 6 years, again I had the opportunity to go to nursing school all paid for, and I passed the test and could have went. But, I had two kids in school at the time, and being away from a full time job for 2 years to go to school full time, was a bit of a daunting situation for me. Even my 2nd marriage was full of ups and downs, in the later years more downs than ups. I felt I had to "support" my kids and home first, thus I decided NOT to go to nursing school. Even after passing the test number 1 at the college there, and was a front runner, I declined. It was one of the most difficult decisions I ever made in my life. I did go to college at night for several years, completely a degree in accounting. Yet, accounting was just not in my mind as the passion I felt for the medical field.
And it still holds true today. If things were different, and I was not chronically ill, and now a bit OLD to decide to go off to college and become a nurse, I would go in a heart beat.

Alas, life takes us on many journey's. Often we may not understand the reasons why until later in our lives. Then there are times we never quite figure out why or why not in what we consider this daily walk of the "game of life"... all too often now it seems it is a game all right, but I feel as if I am on the losing team.

I can "see" the many "curves" in my river of flooded waters and then at times, just a trickle of water over the rocky bottoms of my life. I can blame it on love, on family, on Dad NOT pushing me enough, on the "time" in life when most women didn't think about college, and then on seeing that now I am chronically ill and probably would not be able to be the nurse I would want to be.

Any and all of the excuses in the Universe have never allowed me not to feel a bit bitter about not fulfilling that dream of destiny I had for myself and for the many I feel I could have helped.

I realize now, more than ever, I can "fulfill" a portion of that dream. All of my wide array of medical knowledge, and the years I've put in, along with what I have done to "self educate" and learn about my own illnesses has given me a light to the path of advocacy, of activism, and to help other through my own journey. I've been able to do some things that I helped to kind of fulfill a portion of that dream of "helping others".

As I ponder over all the things that flow and swirl around in my brain, I still live with the idea that many times I've put off something, thinking, well I still have time... to do this, that or the other... or things will be different or better... yet life is very short... as young people we so often can't see that... and as our years pass by so swiftly, we begin to live with "regrets" of why or why not, of how we did or did not, of all the things in life we now know are "missed opportunities". Of course I don't and will never "regret" the wonderful times in my life, and the things I have been able to do, accomplish and say that I did, like publish two books, and hopefully a 3rd this year... but still as mere humans there are so many things we "miss the boat" on... and when you become chronically ill, or arrive at this crossroads in your life where you can recall those times, it can be a mixture of happiness and also sadness for what you "might have" accomplished... never take a moment for granted... they all fly by so quickly.....





Tuesday, January 20, 2015

"Autoimmune Epilepsy"? - Stiffness Onset, feeling severe fatigue, headache? What is it?

I had an "episode" last Friday. It is something I had experienced perhaps 2 or 3 times in my life that I can recall. But, never like I did this time. It was early, and I was getting out of my computer chair, and began to yawn.... but then my entire body became "stiff"... like every muscle "locked down" and the more I tried to stretch out, the worse it seemed to be stiff. 

I had originally posted my "episode" on Facebook. I've got to get out of the habit of posting there, when I have LOTS to say. I need to post here first, then put only a "bit" on Facebook with a link to my blog.... thus here is the post and more about this "Autoimmune Epilepsy" information I have came into as I did some research... And of course, I am "under the weather"... or not feeling well at all. I've got some kind of stomach mess going I guess. I was having issues yesterday with this very strange "yawning" episode ordeal. It's been a long time since I've had it happen. I would yawn and it was like all of my "muscles" in my body would almost "lock" as I tried to stretch. I can't really explain it, but I guess the feeling would almost be like someone having a "seizure" and all of the muscles get "stiff" and rigid all at once. That is kind of the "feeling" I have with this. I've had it happen before but it as has a long time ago. I already was very fatigued and had a very nauseated stomach early yesterday morning. In fact I took medication for the nausea before it got bad and got on the sofa. And I also ran a low grade fever, like around 99.7 to about 99.9 yesterday all day long, had a severe headache, and my neck muscles are so sore I can barely stand to touch them. Of course every morning when I first get up, I really can't tell how I feel. My feet always hurt so badly, I can't hardly stand to walk on them until I have been up and around for a few hours. Anyway, I think my butt might be back on the sofa today. I am still not feeling "great" at all. Probably a flare, I am going to say. Unless the fever was to get higher than what it had been yesterday, any lower grade fever usually goes with one. And even a low grade fever will make me feel like hell, and give me a bad headache. Anyway, I am still pissed because between the pharmacy and my new insurance they still have my scripts screwed up. I am not sure if either of them know what the hell they are doing. Plus I am already getting letters from the stupid insurance co. wanting my doctor to say "why" I am on one medication rather than what "they" suggest... well in the first place the 3 they suggested are NSAIDS of which I CANNOT TAKE - due to my heart and my stomach, plus what I am on is a muscle relaxer, so why the hell they think a stupid NSAID should be what I am on is beyond my thinking. I can already see it will be hell getting all of this through and over with until I get a fill on ALL of my meds and see what they are going to bitch about, and how many they are going to have the doctors freaking send a form on. It just gripes my butt they feel they know "more" than your doctor!

Anyway, the other funny thing that happened last night! We were watching a movie and all of a sudden my pup, Bubba started barking. Within about 10 seconds we started hearing all of this loud popping, banging, and I could see "colors" through my blinds outside. We ran out the door thinking something was very wrong, and there were fireworks going off left, right and center, right what looked like the middle of our town. We live just a stone's throw away from the main part of town. This went on for about 7 minutes or more. And it began to appear it was on purpose and professional. Lots of dollars of fireworks were going up in the air and it was definitely awesome... except for the smoke trail it left when it was all over with. About that time, the phone rings and I told Jim I bet it is my Mother! Sure enough he answered it and she was all in a tizzy thinking this was happening just a block from her house! LOL!!! Then it dawned on me that I remembered reading something about the City having a parade etc for our High School Football team. They won state here about 3 or so weeks ago, so the city was going to honor them. Sure enough I grabbed the newspaper, and I was right. That was going on right around that time, and I guess was the "finale'" when the parade and so forth was over. OMG, though every neighbor was out, all of Mom's neighbors were all thinking something horrible was happening. But, I don't think they could actually see the fireworks like we could. They are just a bit farther from the main street where it was taking place, plus the trees over there are so tall, I think most of them were only seeing the smoky trail it was making as they went off. Anyway, Jim got her settled down and told her, I had read where they were having that last night, so that is what was happening.... so far no terrorists were shooting off fireworks in our town...LOL... guess not really funny since Lord knows where those freaking nut cases are and what they might do. I think Jim put up the "front page" of the magazine from France the other day and I told him that may not be a great idea.... you never know when those totally insane people might be and what they might do if they find anything to try and pin on any Americans. We all know they absolutely hate us... and we would be "extinct" if they had their way.... just insanity.... so if I am not online much today, it is because I am on the sofa. I just still feel really "off"... everyone else take care and have a good Sunday....(here is a bit more on the subject of the parade and my Mom and her ordeal out if it....

 This just had to be posted... it is funny, but it is also a realization of age, the quickness of times that things change in this world, and how the elderly get so ether corn
And if either of my KIDS tell on me for telling this story about my Mom, I will beat your butts... LOL... but Saturday night they had a parade here in town for our High School Football Team. They won state this year, and they were celebrating 5 State Championship Wins that we have had since 1975... well there had been a couple of articles in our daily paper here about it, and I knew they were going to do the parade. But, I don't think they mentioned anywhere I could find that they were going to put on a "huge fireworks" display as soon as it got dark right after the parade. So Jim and I were watching a movie, and the dogs "heard" something first, and one of them barked a bit. Then we turned the movie volume down and sure enough you could hear this loud "popping" noise almost like gun fire at first. But, we both went outside and saw all of these fireworks going off near down town. We weren't but about 4 or 5 city blocks away, so we could see it over the trees, and it went on for at least 10 minutes or so. We still didn't really know why they had went off, but what did dawn on us, is that it was done "professionally". or the city would have never allowed it to happen. Well, about the time the last one went off my phone rang and I told Jim, I bet it is my Mom... now it still had not really dawned on me about the parade, so neither one of us really knew why they were going off, but it appeared it was done "on purpose", not some accident etc... sure enough my Mom was in a panic... she asked Jim if we heard it and he went in to telling her yes, we did, and yes we saw all the smoke afterward, and about that time then it did dawn on me about the Parade for our Football Team. Sure enough I grabbed the newspaper so I knew that is what it was, even though they had not mentioned the fireworks. As Jim tried to tell Mom what the deal was, she got almost pissed and said why would they fire "fireworks" off right by her house?? And we were puzzled... she thought due to the smoke and the way it came over town and she never saw the fireworks at all. She thought they were doing it right around the corner from her where our old hospital building is.... LOL!!!! Jim was trying to tell her no, they were down in town around the old building and where people who used to work at Ennis Business Forms parked on the "parking lot" right at main street... well she wanted to argue so he just said "okay" and all is fine... and I was indisposed at the moment in the bathroom, so I would talk to her the next day. Well, I go over yesterday, and she said did you see where they were trying to clean all that mess up in front of the old hospital from that fireworks mess??? I almost wanted to tell her to shut up about it, but I explained NO!!!!! it was down by the old Ennis Bus. Forms parking lot, and we saw all of it. What was in that parking lot of the old hospital is a huge dumpster full of junk they have taken out of the old building there, and were using a small bull dozer to dump it into that dumpster... it had NOTHING to do with the parade or fireworks what so ever... and if she had been that way all week last week, she would have seen them cleaning up a bunch of stuff they were hauling out of that building... In fact I had told her twice last week I saw them cleaning out some stuff and wondered if someone finally bought that property... the building is in such an old state and the code violations so many, they really can't "repair" it, it would be cheaper to tear it down, and then rebuild it, because of the shape it is in... anyway, she was still so pissed about the fireworks, and then it was even more funny. I got home, pulled out the newspaper from last Tuesday, and on the FRONT PAGE... a HUGE ARTICLE about the PARADE ON SATURDAY NIGHT for the State Win in Football... but I didn't see anything about the fireworks... so that was kind of an error because with as many elderly people that we have here and especially living relatively close to down town, I am sure many that really don't follow our football team. So with the world in the shape it is in and all of the stuff going on, I do feel they should have definitely put something in about the fireworks and made sure that people knew it was going to happen... like I said we really was not sure at first, until I recalled something about a parade in the paper, and that is when I put it all together... but Mom was still just pissed about it all... she HATES FOOTBALL anyway.... so for her it made no sense at all.... IT was so funny!!!! Just because she was so adamant that I was nuts and it was right by her....LOL!!! and as I said MY KIDS BETTER NOT TELL HER I PUT THIS ON FB!!! 

Now I realize I posted a bit about this a day or two ago... but I didn't get the entire thing in there, thus I wanted to "repost" it with all of the "good stuff" in it.... anyone who knew my Mom would totally "get" why this was so freaking funny... I mean she is getting up in age, and I know there are often things she just does not "get" anymore... and maybe never had honestly. But, when I went back over there yesterday and she was still going on and on about how they should have "never" done that... and how horrible it was and so forth, I just had to post the entire conversations.... so take this multiply it by about 100 times and think of all of the "things" in life, her, like many older citizens just don't get... computers, "automated teller machines", debit cards, washing a car at the car wash, driving in the dark, you name it.... it really at times is almost sad that she is so "frightened" of so much in life.... here this year in August comes her 80th Birthday... seems impossible, yet there is still so much that just either scares her because she has not been exposed to it, or she fears learning anything new, she absolutely does not even know what kind of batteries go in her TV remote, and if I finally get her to write them down. and understand it. Then there is no way she can figure out how to put them in the proper direction.

It just seems so terribly wrong to know she struggles with these things, and without someone right here to help her, there would be a great deal that just would totally be things she never could do herself, or my other fear is her getting taken advantage of, if something needs repair at her house... I have to continually warn her to throw away "junk" mail - stuff like "insurance" for your water pipes, or people calling her all the time about trying to "sell" her something, or get her to change over her "electrical" carrier... they just target and prey on the elderly people knowing so many of them either don't understand or they have no one to "watch out" for them.... it is a totally crazy and insane world we live in. Even myself, especially with some emails, for the most part I can detect a "spam" or some "trap" email that can reek havoc with my computer, etc... yet these "spammers" and others that send out these emails get smarter, more aggressive, yet sloppier all the time. But when you get something and it may refer to one of your credit cards, or a company you may do business with, they can almost make you truly believe it is a "for real" email that is totally critical... so if those of us who "know" and are wise enough to "smell a rat" per se', yet can almost be fooled, then people that aren't as educated, or have not grown up with all we face in the daily realms through this walk of life... then someone has to try and look out for them... I feel for those that don't have anyone... we hear all the time how people get "cheated" out of sometimes their life savings by these bullies out there....

Tuesday, December 23, 2014

"Onward and Upward" A 2nd Very Grave and Close Loss of A Dear Friend, Advocate, and a Patient of RA, Lupus, and more...

I almost could not believe my eyes as I read on Facebook last evening, that one of our "own" - in fact a 2nd one this year we lost to these Autoimmune Illnesses. Anthony Hileson was only 62 years old. He had a terrible time with RA, Lupus, and other AI illnesses, along with the brain fog and more than that the extreme pain that comes all too often with these horrid diseases.

After our loss earlier this year of Ali, who was in her early 20's... now we are mourning yet another "victim" from these diseases.

I got to know Anthony through Facebook, and became close to him due to him being in the Dallas area, and he in fact was the one that told me about my now incredible Rheumatologist. He "referred" me to Dr. Q. as well always have called him online, and Anthony was also looking into getting a pain pump shortly after the holidays, which he had talked with me in length about since he knew I had mine.

We have met him once, in fact when I was seeing my Rheumatologist. Anthony was in the hospital at the time right there by the doctors office. So, Jim and I met him for a brief few minutes. We had also had several conversations on the phone.

He wanted so much to put in all he could to help the IFAA, and everything that was related to helping be an advocate and activist and volunteer again the Autoimmune Illnesses that have now taken his life.

He was a very spiritual gentleman, kind, and wished everyone well. Even when he was very ill, he always tried his best to be online to do his part.

"Onward and Upward" was a phrase "coined" by him. So, it is very appropriate that this graphic below express his deep love of advocacy and people. May you rest in peace, without any more pain, sorrow and loneliness Anthony. Your giving of self without any selfishness at all, just to be there for others will always be remembered.....

and if you care to see more about Anthony, you can find his Facebook page at:

The Arthritis Foundation and Our "Victory" from the 2014 Summit!

I am so elated to know my "voice" was in part what made the "Summit" on Capitol Hill a Success Story for Us as Patients, Caregivers and more, along with such an Amazing Success for the Arthritis Foundation!!!!!



It is with pride that I talk about my own personal story and share it through the Arthritis Foundation. I know in my heart they truly care about us as patients. I am so pleased to be able to help out. I am also so proud to be in a very "elite" group which is the "Platinum Ambassador's" for AF!!!!

Wednesday, November 12, 2014

Ennis Daily News Local Paper Arthritis Foundation and Myself - Article

After lots of jumping through hoops due to out local paper having new people coming in, I got the article about myself and the Arthritis Foundation in and published this past weekend. I didn't realize it was printed, because "Rhia's Law" if it will happen, it will happen to me... I didn't get my paper thrown that one day, out of ALL days, that one day I didn't get the paper as usual. That NEVER happens usually....


Anyway. I will thrilled to see it, and also thrilled to hear one friend of the family who told us about it this morning at the doctor's office, which is how I found out that it had been published!!!

I went straight to the paper and picked up a copy, and when I went into the market, I had several people stop me and say they had seen it in the paper over the weekend!!!!! Which made it even better!!!!!

I am kind of upset that they "shortened" it a bit, because it was longer. But, I think due to the fact he had left it out, and it had not been published when I first sent it to them, he made sure he got it in immediately.

Again, I owe so much to the Arthritis Foundation and especially to Laura Keivel, who has truly made me feel that I have found "my voice" in being an Ambassador for the Foundation. "The Lord Willing and the Creek Don't Rise" as the saying goes, I hope to be back in DC, for the Annual 2015 Summit on the Hill, in March again. If at all possible I plan to be there every year my body, my mind, my spirit, and everything involved allows me to...

Saturday, August 16, 2014

New Post - My Letter to Congress in Regard to Arthritis, Autoimmune Illnesses, Medicare, Advantage Plans, Medicaid & Just How We Lack All We need to have a "Quality of Life"

I just completed this email below. I've been working on it for what seems like weeks. Due to ALL of the doctors visits, Jim going to Rehab twice weekly, my visits with my dentist to get my dentures (which I am already having "flare" issues I think with the Lupus, Sjogren's and RA) & numerous other things that have had to be taken care of, I've had to write this in between all of that. Finally, this morning around 1:30am I woke up needing a drink of water. Not realizing my foot was so "asleep" I got up and immediately went to the floor, with a very "twisted" left ankle, that left me in tears. I tried to go back to bed, but there was no use. So, at 4 am I got up, and decided to finish the email, and try and get some things done on the computer and on line that have had to be put on the back burner due to all else going on.

I am sharing the email with you. I am also sending it to my own House Representative, and to several others in the Federal Government that I feel can and may try to do something to help not just myself but ALL of us. Here is the email. My hopes are that YOU will write your own and also email it. The Arthritis Foundation sent out a newsletter about 10 days ago asking for us to all send in our stories to the email address that will be listed below this one I sent....

Good Afternoon to All In Congressional Representatives,

First of All, I want to thank, House Energy and Commerce Committee Chairman Fred Upton (R-MI) and Rep. Diana DeGette (D-CO) recently who announced a bi-partisan initiative, called the “21st Century Cures: A Call to Action”. This will certainly help to shed some new light on chronic illnesses, and especially those new diseases and illnesses, that at this time, like many types of Arthritis, (Rheumatoid, Osteoarthritis & Juvenile to name a few), that have NO cure at the time, little known about “why” those who all of a sudden get the diseases, why others may not, what medications we need in the future to either put these illnesses into remission, OR CURE them…. even STOP them before they ever do the severe damage they do to all of us suffering daily dealing with ALL of this issues these horrid illnesses bring into our lives. I hope many of our other Congressional members will stand beside HECC Chairman Mr. Fred Upton and Representative Diana DeGette and help to make this “Call to Action” a huge success for the thousands and hundreds of thousands suffering from various forms of Arthritis and Autoimmune Illnesses.

I am an “Arthritis Patient", that suffers from several various forms of autoimmune arthritis, as well as osteoarthritis. My list of diseases, illnesses and syndromes; Lupus, Rheumatoid Arthritis (RA), Sjƶgren’s, Pernicious Anemia, along with many issues brought on by thee illnesses, such as a heart attack at 40, severe pain, swelling stiffness that all have consumed my quality of life at times so much, that I feel the diseases rule my daily living. At the age of 15 I had my 1st knee surgery. At that time, they knew little about Juvenile Arthritis (JA), and the experts really did not know much about RA, and all of the other arthritic and autoimmune illnesses here in our nation. So, I went for years from one physician to another, trying to find out why all of my joints were “falling apart”… by the time I was 40, I had already had a left elbow repaired, a left shoulder repaired both knees had surgery at least twice back them, plus all of the other “symptoms” that most doctors at the time “blew off” especially when it came to women. They for the most part thought if I woman complained about aches and pains, she was either nuts, a hypochondriac, was having “female” issues, or was depressed. That was the huge one. The answer from most doctors to a woman with “mysterious” health issues was to determine they are depressed and fill you full of anti-depressants that did nothing for the “physical issues” that overwhelmed you. Still I would hear, even with the severe migraine headaches I had, the weakness, & still other signs and symptoms that should have never been looked over, but taken seriously.

In 2009 I FINALLY began to get some “answers” that made sense. I was not nuts, depressed, making it up, had female issues etc…. I had an “autoimmune issues or issues” that were ruining not only my joints, but also causing he severe fatigue, all of the joints and surgeries I was having… including both knees completely replaced and my right shoulder had to be replaced, along with a 4 level cervical surgery, for degenerated disc disease, and now my thumbs, fingers, toes, and ankles are “eaten up” by RA.

I’ve jumped through hoops and hoops for a very long while over my medications for these diseases. When you have a serious illness, and medications come out that may “halt” or at least give you a huge percentage of reprieve, so your quality of life comes back & your doctor feels the medication is necessary, there should be NO ONE at an insurance company, or throughout Medicare to tell your doctor differently. These ridiculous amounts of forms, paperwork, having to be put through 4 or more medications that DO NOT work before the ONE that does can even be considered, makes for a patient becoming worse by the day, paperwork and red tape costing precious doctors time, insurance people who have no clue what the entire thing is all about, and it is a vicious cycle of “stuff” in order to finally either get the medication you NEED OR be turned down, which really is asinine. I have been through I cannot tell you how many “pre-authorizations”, sending medical records, my doctor having to fill out forms which they should not have to, talking for literally hours on the phone trying to get to ONE PERSON who can “fix” the problem… and on the computer sending emails, sending messages, and as I said, all the while suffering from these horrid diseases that each day wreck my joints and my body a bit more each day. Any type of “autoimmune arthritis” such as RA, effects NOT JUST the joints. They are “ systemic” in nature & can effect the heart, lungs, kidneys, your hearing, your eyesight, your memory, your blood, your stomach, intestines, and so on. Just about every part of the body can be effected by any type of autoimmune illness, and can reek havoc in just a short time without proper care.

One of my horrors with one of these “Autoimmune Arthritic” diseases is Sjƶgrens. This is just one that they do not know nearly enough about. The doctors know it effects the mucous  membranes, which we have all over our bodies. Our mouth, which is how saliva is formed. It keeps our eyes moist, our intestines, and many “linings” in our organs have these types of member in them. Without them, organs like the inside of the mouth, dries out so badly, you cannot even speak, swallow, and the worse cause horrendous “dental caries” and other issues! Yet, I was not informed of just how quickly and how badly my teeth might be effected. I brushed daily, tried my best to chew sugarless gum, sipped on green tea all day long, and used the special toothpastes and all of the “remedies” for dry mouth. Yet, about a year ago, all of a sudden one evening we were eating dinner, and an entire back of a molar just fell off in my mouth! Within the course of 3 weeks I had 3 more teeth with break off at the gum line, or a half of a tooth break off. Then suddenly almost every tooth had either a large cavity in it, OR would crumble off on the edges, and I knew I had to get assistance quickly because I was losing all of my teeth, and in a time frame that was not going to allow me to wait even a month or two.

So, I began trying to find an “Oral Surgeon” and/or an Oral Surgeon/Maxillary surgeon that would take my Medicare Advantage Plan “Humana Insurance”. Well, I have yet to find ONE dentist, oral surgeon, and so forth that will take my insurance, EVEN THOUGH this problem is caused from a physical ILLNESS, NOT just regular dental caries. This is a serious matter, that I spent weeks and weeks calling dental offices, and researching online, first of all, WHAT I truly needed done, and a Dental Doctor that could do the procedure, and try to help me get some of it paid for by my Medicare Advantage Plan. I literally spent days and days sending emails, making phone calls, sending messages to dentists offices, all to no avail. In other words, (unless you have had to price these types of dentures called “mini implants”) I was going to have to cough up anywhere from $8,000.00 to some the charge $16,000.00! Now these are the dentists that have been through enough “training” to do certain types of “oral surgeries”, not the Physician Dentists, the true Oral and Maxillary Surgeons MD. I am sure when you look at the fact they usually put you under complete anesthetic in an operating room, and have several nurses and so on assisting them, they charge I would say $25,000.00 and UP! By the time you pay his services, a anesthesia doctor, all of the charges for an “outpatient” stay at a day surgery or hospital setting, I know from the extensive surgeries I’ve had due to all of these horrid, life altering chronic illnesses, it certainly would be a great deal more than $8,000.00. And “they” MAY be able to get my Medicare Advantage Plan to “pay”… with some pushing, pulling, red tape, & lots of time before I could have anything done, BUT the insurance ONLY PAYS 60% of any type of “dental” procedure no matter if the problem has been caused by an Illness! So, that means by the time you added up all of those “extra’s” involved where I would have to travel back and forth from Dallas many times to get it all done (so far I have had about 5 appointments to do all of this, and still have another at least 3 to go)… thus you are looking at the cost of gas, parking, and what if something happened after hours or a weekend? Like a dry socket, of which I had one, and also the start of an infection. But, I am within 5 minutes of my dentist/oral surgeon, thus I can be in there and getting care within an hour or two. And I am sure if something happened over the weekend that called for attention, he would go to the office and see me. Now, as it is, after an almost “deadly” car accident that my husband (who more or less has been my “caretaker” now for almost 10 years) last March. An 18-wheel tractor trailer “ran over” him from the back. Aa of now he is barely able to walk, much less drive anywhere. So, I have only myself to depend upon. My 2 children live 8 or more hours away, and my Mom, who I am “watching after” and helping out at times, can barely drive to the grocery store and back home that is about 10 blocks or less, thus there is NO way I could have been going to Dallas, being “put under” and driving myself home.

This part of my story only touches the “iceberg” of what I’ve had to endure. Lupus, RA, Sjƶgren’s, Raynaud’s, Osteoarthritis, Migraines, two heart attacks, one at the age of 40 (now they think the Lupus may have caused them, but that was years ago before I was diagnosed), plus all of the complications that go along with these illnesses. They can “attack” just about any part of the body, from the brain, to kidneys, to your heart and lungs, blood vessels, skin, and that list just goes on and on. As I have come to find out also, once they “finally diagnose” you, more than likely you have “several AI’s, causing the problems. (AI- Autoimmune diseases). We NEED HELP! WE NEED more RESEARCH, TRAINED PHYSICIANS ON THESE ILLNESSES, including DENTISTS, MORE MEDICATIONS, TO BE DIAGNOSED EARLY BEFORE all of your body is falling apart from them. We need to find out what causes these chronic illnesses, whether heredity, or caused by something later in life. The number of people (WOMEN rank MUCH HIGHER in getting any of these than men), grows each day. Some of us, like myself, may have been ill for many years, 10 years, or more BEFORE they finally get a doctor who takes the time to sit down, and put together the pieces of the puzzle of someone with one or more of these illnesses. But, doctors are overwhelmed, underpaid, and just do not have the time, even as specialists, like Rheumatologists, to really EXAMINE a patient, and there past medical issues to find out their patient is ill with a disease that could have been there for a decade or more, By the time mine were found out, I had already had both knees replaced (after several arthroscopic surgeries), an elbow surgery, arthroscopic surgery on both shoulders, my right one now replaced completely. I have osteoporosis, and mine is “severe” in range. I have the bones of someone 80 plus years old.

This past 6 weeks have been especially an extremely fought time for me. Due to the Sjogren’s literally eating away from the inside out, and no one knowing it until it was too late, I have had to endure having two sets of 5 at a time teeth pulled, much of it difficult due to the teeth being so brittle, thus difficult to excise, then after going through a couple of times trying to make sure the complete regular dentures will fit right for now, I went through a couple of visits for that. I finally got my “new teeth” just this past week on August 12th, 2014. Yet, I still had 11 teeth that had to be pulled all at once, then my gums were sutured shut, after my dentist had to do some “filing” to my bone so the dentures will fit properly, and then my gums were sutured closed in the front, top and bottom. I did then immediately get my dentures put is, but of course with extremely swollen gums, suturing and a great deal of bruising due to all of the local anesthetic being put in the syringes, then the extracting in itself, my gums developed some very sore spots, and even several mouth ulcers. Those I get with Sjogren’s to my dismay. I HAVE to be able to wear these teeth, since I have none of my own now. And I cannot have them “modified” to be held in with the “mini implants” until the bone is completely healed from where all of the teeth were extracted first. This process could take 90 to maybe even 120 days. My problem is trying to have my own mouth accept them, due to the issues of ulcers, and other problems I develop in my mouth due to the Sjogren’s. Then even at that there is already over $4,000.00 paid all of my pocket to get this far with the dentures. Then in another 90-120 days, there will be another $1200.00 (what was “left off accidentally the original treatment plan to pull all of the 11 teeth left) that we were not expecting, then another over $3,000.00 just to have those four “mini-implant posts” put into place in my gums, then the dentures modified to fit properly on those posts. If I could wear the dentures as they are now, I may not have to incur the last $3,000.00 plus BUT I can already see since I am suffering from ulcers, (probably a bad flare of the Lupus, Sjogren’s, and RA) from all of the trauma to getting this far with the dentures, and all of the other very stressful things going on in my life at the present, it has brought a bad flaring up of the autoimmune illness. When this happens, I can have everything from those types of very painful mouth issues, severe Lupus Headaches, severe fatigue, swelling of my joints, the “mylar rash” on my face, & numerous other symptoms that are from these illnesses. It is shameful the amount of time, the loss of quality of life I have sufferer and continue to suffer, the lack of enough research, medication, doctors, and other medical items that may help to put these illnesses in permanent remission, or not get them at all, then I have to fight “tooth and nail” (no pun intended) to get my Medicare Advantage Plan to pay a dime, especially when it comes to anything to do with the huge burden of expense of all that I have endured with my mouth, and the Sjogren’s that causes it. I want to see this change, for myself, and also for many others, some I have met recently that are going through the same situation that I am. Most of them like myself, really taking on a very heavy financial burden because they cannot get Medicare or a Medicare Advantage Plan to cover any of this even though it is a “medical” problem, not dental per se. For some $9,880.00 plus (because I already had several teeth that rotted down to the gum and had to be pulled before the procedure of getting my mouth ready for the dentures) may not think that is a great sum some of money. BUT, someone living on Social Security Disability, and the spouse (my husband) that had been my “caretaker” for the most part, then he was in a severe, almost life taking vehicle accident on March 26th, 2014 and spent almost 4 months in the hospital, with many complicated injuries including his spinal cord. Thus now he had massive health needs, puts even more of a burden on my life and on his that I an barely begin to tell about. He was hit from behind by an 18 wheel tractor trailer that day, and rushed to Baylor Emergency in Dallas, where he was operated on for basically a “broken back”, 7 broken ribs, and the list of injuries goes on and on. So, us trying to take care of one another is a daily struggle. Again we begin all over to try and find proper physicians for him through the system, and much like I have come to find out, many doctors are refusing to take any Medicaid patient, and now even worse, are refusing to take Medicare patients, due to not getting paid properly, and in a reasonable time length.

I would like to see for one Medicare or these Medicare Advantage plans cover MORE on something such as Sjogren’s, that is not “dental” in nature, but caused by a physical illness. I would also ask that rather than put up a road block, where the patient cannot get through to anyone at Medicare to explain the problems, or be able to get our doctors and dentists to be able to help get these types of things paid for just as any other type of chronic illness. I cannot express enough the huge amount of emotional, physical, mental, and financial anguish I have been through, and still have more to go just to be able to eat. But, my teeth are what can sustain my life, and without them, I am at risk for all types of other physical and emotional issues.

I realize we have many people in our nation, and around the globe in need of all types of medical attention. Yet, in a great nation such as the United States, our people should not have to bear such a hardship, and not have anywhere to turn to get any type of financial assistance with something so critical as your teeth. I did NOT cause this, the disease did.

I ask you to see if there is a way to change this system, give help to get things like this paid for or at least a good portion paid for by Medicare and/or a Medicare Advantage Plan. I ask you to get the funds out there to get more specialists, so we have enough doctors to are qualified and trained, that have went through a major study of these life altering illnesses, and can give us back our quality of life, and find these illnesses and have the ability to treat them before 5, 10, of more years go by and the damage has already been done.

I feel I do my part by voting, by participating as a volunteer, activist, and Ambassador for several organizations that are trying to change the face of Arthritis, Autoimmune Diseases, and all of the other medical problems that come with them, I sign petitions, I send letters, make calls, and send emails. I am somewhat limited to do what I can medically and monetarily, but in the ways I can try to stand up and make a difference, I give it my all. Now, I ask you do to the same. Stand up for all of us that want our quality of life back, to be able to do the simple things in life like eat, do a hobby, work in a garden, or whatever you may want to do, by giving the way with funds, research and voting for bills that will reduce the terrible burden off of those like myself.

Thank you for your time and for listening. I hope my “one” voice can help to make a difference.

Sunday, June 29, 2014

Doctors, Patients, Medical Staff.... We Must Stand Together, Hand In Hand... and NOT Allow this "ship" of Medical Needs Sink

In this day and time, when SO MANY of us NEED doctors, medications and care, of the very best, what happens...POLITICS happen! I realize the VA has been an extremely huge mess for many years. I had watched my ex Father In Law go through that entire "system" when he had a brain tumor, and it is insanity. But, Medicare and ESPECIALLY the "Medicare Advantage" Plans are in the realm oer ever WORSE than the VA's nightmare. Our physicians are falling out and "opting out" of taking anymore patients by the dozens. In TX alone we have the HIGHEST RATE of doctors stating they are opting out.. because they are NOT getting paid, OR like a doctor told me, it literally took him 2 YEARS to receive payment for two surgical procedures that were done, and it was not until it WENT in front of the Cort of Appeals, the judge FINALLY paid him what he was owed. Of course what about all the time he was waiting to get paid? Who is "soaking" up these "unpaid" and underpaid bills the physicians wait literally for years to get paid for???? So, when you begin to "hear" the real stories of the doctors and medical staff that are there everyday working in the trenches, with the ridiculous amount of red tape, tangled and mangled "referral" for this doctor, and a "referral for this one, and another one"... and it goes on and on. And where are we when all of this "Waiting" is going on???? The patient suffers also.... somethings cannot and should not be put off due to "money".... so it is a two way street.... I don't blame the doctors for wanting to "jump ship" yet I also cannot fathom having honestly to CALL 32 DOCTORS OFFICES as WE have this week and NOT ONE will take the "State Funded Care" that Jim has to be on now, until settlement comes in from the wreck. So, even though this is a "state" by "state by state" situation, it is all the same! Patients suffer, the medical professionals suffer, and those sitting in the "big house" on the Hill are not "concerned" because they know THEY are taken care of the rest of their lives. I know there are some "good people" in Congress.
There are some that are fighting day and night, tooth and nail to CHANGE, UPGRADE, get patients taken care of in a manner they should be, but also get the hospitals, all of the medical staff, and doctors paid what they are truly "Owed" .... I am enclosing a part of the AMA Network Newsletter I get Monthly... down on the side there is one article talking about just this... but I feel you will find this horrifying when you begin to really take it all in.... where will "Medicare" being in 10 years, 20 years, 50 years... I doubt our kids will even see anything called "Medicare".... if we as a country continue to allow this "bad" business to go on... ALL of us shall suffer needlessly....





http://www.patientsactionnetwork.com/lets-work-together-to-fix-medicare-now/