Showing posts with label writing. Show all posts
Showing posts with label writing. Show all posts

Wednesday, January 10, 2018

Hoping a better 2018! Lupus flare, RA flare, Flu virus, Chronic Pain severity, epidemic, wishing for a better year than since 2014 wanting to get back to writing, blogging and advocacy work

Putting "hopefully" my writing, posting, advocacy and writing areas of my life back in the forefront. The past two years, really more like since late 2014, seem to have been a nightmare. 


I've had good things happen, but losing two of my fur-babies, my Mom getting ill so quickly and passing away in 6 months, losing my Mom's "baby" sister, losing my marriage and not sure why yet, having a pain pump replaced, having a fractured hip and spending Christmas 2016 in the hospital and inpatient rehab, the a very complicated neck surgery in April 2017 that took me months to just get out of a hard collar with, and now my Lupus and RA are really giving me heck... much more but those are a few of the "highlights" that really put my several years previously in a spot where I felt I would NEVER be able to get back to my advocacy, activism, writing, blogging, posting... and the things I want and love to do... And I am still going through stuff health wise, my neck is really hurting again, and has been, but my shoulder as I say below, that has already had a complicated replacement began acting up, right after the last neck surgery. We have changed RA medications trying to get the RA flares under control, and my lower back and legs really beginning to bother me again...


I am not sure if the ridiculous weather we are having is a huge factor, but generally the WEATHER has always had a huge impact on me, when it comes to chronic pain, and migraines.... way before I could ever get a physician to "agree" with me, I KNEW the weather effected my severe migraines when they were so bad for over 20 years of my early life. 

Now all doctors and health professionals agree that the weather, temperature, humidity, erratic weather, cold one day, hot the next, all of those things and the barametric pressure have sometimes severe effects on many illnesses, especially chronic pain...

I ASK that each of you the "follow me" here, on my daily newspaper, through Facebook, Twitter or wherever to keep me in your thoughts and prayers as the year progresses. I REALLY want to get back to those things such as my writing and blogging... more on the advocacy side, but even sitting here at the computer puts me in such pain at times, there are days it hurts to sit, stand, walk, lie, no matter what I do, it is severe on some days, and here lately MORE days than not....

BELOW is a POST from my Facebook page, where I had been commenting to a friend of mine who is going though some frightening issues with her liver, and her Diabetes. So, as I posted this, I wanted to "add" it here also... my numbers honestly here on my blog have fallen so much, and I know the holidays effects that, but also me not able to post as much, put up as much relevant information as I usually do... I desperately need to update the look and feel... I know it's getting outdated, and it is a matter of having the time to do those things, and those are what I really want to be able to work on....

I APPRECIATE those like yourself, that give back the feeling that "I matter"... I try my best to let others know I do appreciate each one of you that take time to even give a "thumbs up" I realize not all of us have time, or feel like Posting, but I always know someone "cares" by just a heart, a thumbs up, or a "face".... you too I realize have been through so much. I have to "say something" about a "comment" I read the other day. Some one made a comment that Facebook is NOT THE PLACE to "post your personal problems"????? WHY would we "want to connect here at all" if we were not looking for others either like ourselves that "need that extra push up" every once in a while, or to "see" we are NOT alone in this come and when I "post" personal issues, which health is very personal I think, 

I am NOT looking for an answer or someone to totally agree with me, or what, it is MY way, like my blogging and writing (partially)... the social media is a way to connect for many reasons, but since I have "no really close family or friends physically that I can "see" ) my son and daughter are about the only "close family" I have left, and my daughter is 8 hours away and we talk probably at least 3 or 4 times a week, but she cannot just "drop her kids, family and husband" to run 8 hours up here, and although my son lives close by, he has his own things also, he has been fighting with "FM" now for a long while, so he is trying to re-educate himself, by some short classes, where he can do certain jobs, that the ones he used to do, due to the FM he no longer can do, lots of very hard physical labor... even though he is 37, age as many of us know with some of these horrid illnesses, syndromes, chronic pain issues and so forth, AGE has nothing to do with it.... so he sends me messages, and if I NEED him, he could be with me quickly, and we keep up with each other, 

BUT he also knows ME, I really 'don't want" the feeling that I have to have someone doing everything for me. I LIKE doing all that I CAN DO myself... and it is hard for me to even ask for help, because all the years I did everything, from hanging ceiling fans, to painting, any kind of home improvement just about, the lawn, and so many things I've loved to do, I KNOW that even since my cervical neck surgery last April, I have "overdone" some stuff. I PRAY my neck is not messed up again, or my right shoulder, that ever since the neck surgery, it is the RIGHT ONE that has already been totally replaced by a "reverse total shoulder replacement" about 6 years ago, I think, but it has given me hell ever since the last neck surgery... of course I realize 'some things" I had been doing I've had to "stop" and either let my son do it, or my neighbors help some, or I just let it go, knowing it can wait, other than an emergency thing at the house, some things that I just could NOT stand to "let go" I've had to and I am STILL learning to "let them go"... but being alone with the pups now, I do as many things as I feel like, or that I can do, if possible.... yet trying to learn to say "no" I can't, or sit down and say I just hurt too badly today, etc... those are very hard things for many of us to do... not in our "genetic makeup" 

Friday, February 10, 2017

I was given a "press release" that I am very proud of ;)m- Goes to show ANY Advocacy Work is well worth doing especially for Chronic Pain and Illnesses


I've really been down and out lately at the numbers that are coming to my blog. Used to I would have at least 75-100 and sometimes 300 or over. But, over the past 4 months, even before I went into the hospital I noticed a huge drop in those coming to my blog.

I know "Google" have changed a great deal of their SEO stuff, BUT, I have many of their ideas and recommendations that I use. I've not went through the entire "book" of recommendations, BUT, I usually post everyday, sometimes more than once. I do miss sometimes, such as when I was "out of pocket" due to the hip fracture, but even then I still posted once I was feeling a bit better and had my laptop to post to all of my social media places.

The one thing that I have not done "much" and continue to try and not do, is get too deep into the "political" issues that are invading our lives DAILY! I know many are like myself and HOPED that AFTER THE ELECTION some of the DAILY CRAP WOULD STOP!

Well, I should have known much better than that. With the "Donald Duck" elected LOL, there is NO way to SHUT HIM UP NOR the NEWS. Everything he does, tweets, says, posts, and probably what he eats for his 3 meals a day are NOW LARGER ISSUES ON THE NEWS, THAN THE ELECTION!!!!!

I am SICK TO the point of NAUSEA hearing about "The Duck" this, that and the other.... I cannot even "type his name" it makes me so ill to see or hear about one damned thing he does.

I was a "voter" and I've voted for many years, without missing many. Of course I feel if we "vote" then we do have a right to GRIPE! But, for those WHO DO NOT VOTE, then you do not have the RIGHT TO FUSS because you did not allow YOUR VOICE TO BE HEARD!


I KNOW that my "typical" daily life may not interest you. thus I "try" my best, to put something useful, fun, information that you can use, new items from The Arthritis Foundation, to WEGO, to other health and human information especially for us that remain all too ill, from Chronic Pain and/or illnesses.

I am HAPPY that although I had TWO HIP FRACTURES, now in 3 days it will be 90 days since that 1st surgery, and I am doing very well. Even without a cane, and in fact, I left it at home yesterday and did not even take it with me.

I realize at times, I am still leery about being almost too cautious, in fear that another fall could even be worse. I also am in fear that if I don't try and do all I can to "never cure" the osteoporosis, BUT try and build "muscle" and "put protein" back into my body, I have a far better chance of not being a "fall victim".

The woman that was in the room at the Rehab place with me for part of the time, had already been in the hospital like 3 times BEFORE CHRISTMAS, IN LIKE 3 MONTHS! She had pneumonia a couple of times and was put in for that. She has also been a "Diabetes 1" victim since being a teenager, which I watched even after all these years, especially without a proper diet like she should have had in Rehab, she was always having way too many problems with her Diabetes. Then she had fallen and been in Rehab before Christmas I guess in August or September, then fell broke her pelvis, WHICH SURGERY OFTEN CANNOT REPAIR A BROKEN PELVIS, thus you have to spend WEEKS AND WEEKS IN BED TO ALLOW IT TO HEAL ON ITS OWN! Her pain had to be horrible. I know HOW MUCH PAIN I WAS IN WITH THE FRACTURES TO MY HIP, and I was yelling, screaming, cussing, bitching, crying and my entire neighborhood probably thought someone was attacking me, or I had just lost the rest of my mind. MANY of them came when they saw my son's vehicle here to ask what happened, that I was SCREAMING AND CRYING SO MUCH, they could not imagine what had happened. No one I guess heard me screaming and yelling and crying, while I was still in the house for over 3 hours, being too stubborn to call the ambulance. I "hoped" I had a "bad bruise" NOT a damned brake to my hip. But, alas dammit the news was worse, because I had TWO breaks in it.

I cannot begin to even express "ALL I LOST" in those weeks and weeks, through the surgery, through being an inpatient in a Rehab Center, from my own self-esteem, pride, I felt unworthy, useless, a burden, and just a totally screwed up person to be going through this and making my kids go through this also.

LOTS played into my issues with the entire thing, because of losing Mom to Lewy Bodies Dementia in June of last year, and having to take care of her, the 6 months prior, I was already more than behind on "caring for me"... I cancelled neck surgery at least 4 times, and just put my RA medication on hold, since I just felt I COULD NOT leave and go to Dallas for a few hours.

I AM STILL trying to "clean up" everything that needs to be done, and actually am totally confused, because I feel I did not "grieve" enough before trying to begin taking care of other affairs once she past away, that now I get to a place I am not sure what, what not, which, how, is done, not done, and my own "Christmas Present" to myself, is still sitting in my hallway, along with the new rug for my living room. But, now with the hip thing, I fear trying to turn the old sofa over in order to get the backs off of it. That is what has to be done, before it can be taken out of the house. Once that is gone, I can once again clean the hardwood floor very well, put the rug down and get my new sofa/futon/chaise lounge finally put up and using it.

So, NO the political issues I speak of are usually tied into "medical things".... whether clinical trials, or laws, or trying to get the government to fund certain research projects, and so forth, my "own personal beliefs" in whom should be or not be President, and so on down the agenda, I feel I did my part, I can now bitch all I want, AND then go on with my life and pray we have NO ALLIES by the time one YEAR has gone by with the "Donald Duck"....



P.S. I WILL POST THAT PRESS RELEASE AS SOON AS MY NEWSPAPER PUTS IT OUT.


Saturday, December 31, 2016

Trying to Move Past the "bad" of 2016 & look ahead to a Hopeful 2017... (Resolutions?, Revelations, Lessons from life's past, reaching within the depths of my soul to make sense, out of a "senseless" world and all that we must endure)

"Trying to Move Past the "bad" of 2016 & look ahead to a Hopeful 2017... (Resolutions?, Revelations, Lessons from life's past, reaching within the depths of my soul to make sense, out of a "senseless" world and all that we must endure) "

Alas the "title of this post" is a great deal longer than usual. I felt in order to bring the message to all of you I needed to try and title this so everyone will know how crucial this post is, and just how I've had to pull every ounce of whatever bit of faith I have to bring you the truest feelings of this past couple of years.

Life deems to bring us many things that we cannot possibly "see" the good out of it, whether it is loss of a loved one, a fur baby, chronic illnesses and pain, watching others suffer, when so often whatever is happening seems useless and a waste of what little time we have here on this Earth. I never said or pretended to understand why so many horrible events happen to those that are good, gracious, loving, nurturing, and are decent people. Yet, others that are horrible, frightening, terrible to their own kind, are not decent, not caring, and often tear others down, rather than build them up.

Most people find themselves trying to put a list of "New Years Resolutions" together at the beginning of each year. Other similar words, "revelations, settle, make a pledge to do something a different way, such a quit smoking, work out more, eat healthier, we pledge to ourselves to do some things in a manner more positive, than hold onto our old ways, that may not have been the best way to do things...

thus rather than resolutions, I try and use a different term, such as "throwing out the old, torn and tattered ways, and beginning a new way with new "material" and a hopeful heart. I also know many of us "keep" some of those "resolutions", and some find themselves settling back into their old ways, which brings a guilt to our heart, thus too many "difficult" changes within a short amount of time, leaves us to NOT be able to keep them all. We get upset, feel so useless, see others making their goals, while maybe we cannot keep our own.

Below are a  few synonyms that could be used to mean "Resolutions":

intention, resolve, decision, intent, aim, plan;
   They have became a "tradition" like black eyed peas at midnight for good luck in the coming year, we have many traditions, we keep or try to keep during holidays and so forth, like mistletoe, the Christmas tree, sending cards for holidays, celebrating birthdays, anniversaries, and so forth.

I guess I would say that I shall "pledge" or commit to a few things that I feel I need to change and have a fresh start for the new year.

As always all too often we have "unexpected" roadblocks, happenings, events, whether it be family, illnesses, accidents, jobs, and so on, that change that path of good intentions we set up for ourselves at the 1st of the year.

For me my good intentions tend to get put aside for family, or for the chronic illness and pain I suffer with, that in a moment I can go from feeling great to being in the hospital... having surgery etc. None of us can truly "predict" the exact things that will happen from one moment to the next.


So, as I, along with many of you try to "have the promises" to ourselves duly noted and ready to start anew, remember WE ARE HUMAN! We will have issues come up that causes us not to be able to keep some of the very things we so want to do, change, stop, start and so forth...

As I write this tonight December 31,2016 from my hospital bed, hoping to be out of here and home very soon, again, never did I think 3 weeks ago I would fall, fracture my hip in 2 places, have other complications arise, and spend both Christmas and New Years in a hospital.

Try to keep yours a list of things that are not too complicated, or just write down a few, lie 4 or 5, rather than 10, 20 or more, and be proud of the progress you make even if you don't complete them all. If you get "some" of them done, or just a piece of several that you are working towards a goal on, give yourself a "well done" and push forward, knowing even a baby step, is a definite positive for the New year and YOU!

A piece of me feels as if I am blocking out all that we went through with Mom, then losing her in June so suddenly. Then the ordeal of paperwork, and all that happens even after the funeral is over.

Then I've went from one issue such as both ankles severely twisted, to sinusitis, to pneumonia, to Lupus flares, then to take such a horrible fall. and break my right hip in two places... to wind up being in the Rehab on Christmas, and maybe for awhile after the 1st of the year.

I just know that things have to get better. I am so terribly tired of being ill in one way or the other. I tried so hard to NOT allow this to happen to me. I knew my chances of a fall could lead to a break of a bone or joint. That is one of the very last things I wanted r needed. But, when I hit that hardwood floor two weeks ago the coming Tuesday, I knew it was not good.

I wanted to believe that it was bruised badly, yet when I could not drag it on the floor without screaming out in pain, I knew then it was bad.

I've been in a turmoil over the state our nation is in. Now with the "person" that is to be our new President, totally terrifies the hell out of me. I cannot fathom him having enough tact with out own Congress, much less any other nation.

I am having to almost "hide" my feelings this season. Here I see many families, together, excited about kids, Christmas, and this very special time of the year, yet I feel left in a "dark fog" wondering once again why I feel "punished", why did I have to take a fall as I did, and break a hip. And what are the chances that I wind up having another surgery if this hip does not work without an entire replacement since the osteoporosis could cause issues.

Frankly, this is one of the very 1st times I've been this worried about my own health issues. I watched my Grandmother and my Mom be able especially my Grandmother take care of themselves for YEARS alone. Now, I fear everything, from just getting out of the bed to going home. I've always been so bound and determined to do my stuff myself. Now, between the Lupus, the RA, the Osteoporosis, and now a broken hip, that I will lose some of my independence, which that thought bothers me badly.

Then to have one of my fur kids pass away suddenly night before last in my arms, here in the Rehab, just seemed to put the entire last almost 3 years into a world of such hurt, for myself, and also my kids; I keep trying to "hold onto" what little faith I have to sustain me, and try to over the sinking into sand, peeking upward, and asking for another half ounce of courage, strength and ability to try to "understand" the reasons I may NOT understand, not now, but someday I shall know the why's of this life, and the grief it brings to us within a matter of moments.




Sunday, November 6, 2016

Day 5 - WEGO Blog Writer's Challenge! "Who am I"? What makes me want to really stand up and be heard? #HAWMC

Day 5 - 

 

WEGO Blog Writer's Challenge! "Who am I"? What makes me want to really stand up and be heard? 

I've been a "passionate" and avid writer and poet since I was 13. I told people many years ago, my "heart's and life's work" was to write. That may entail poetry, short prose, and even as later in my life came, Music Lyrics and singing. I've always loved music, played the piano for years and took lessons, played the drums, (not all that good but I love it), and I always wished I could have been a good a singer as my Dad was.
When "something" hits me, whatever subject that maybe. From all of the advocacy, volunteer, and human rights issues, to diseases, and illnesses, plus chronic pain, the way I serve best is through my writing. That may be on Facebook, my blog, or through my books. Even my emails often reflect what "platform" I am on at that moment (not political for the most part).

I believe we all have a "voice". It is just that some of us, like any other talent, singing, painting, drawing, playing sports, or whatever your "best and favorite" thing is to do, we can "say" how we feel by the way we work towards those goals within those favorite realms we face.

I get upset because I find that although I "think" after one thing or the other "settles in my life" I will find MORE TIME to do THOSE THINGS I LOVE, it seems something else "holds me back" or take my attention from the exact thing I want to do.

I LOVED the trips every couple of months or so with my Mom. We had such an awesome time, heading up to just over the border of Texas to the Casino in Oklahoma, Winstar. Neither of us were or are "gamblers". Those times were more about "getting away" from it all. Bills, life, house, errands, cleaning, cooking, and all of the daily grind things we face. It was the drive and talking, the stop always at the same place for breakfast, just before we got to the Casino, and then walking into where there are NO CLOCKS, you do not know what time it is, whether it is day or night, you step into a world that totally takes your mind off the "world outside". It was watching Mom win a few bucks, or her sitting and watching me play some of the "penny games" that I loved with all of the "bonuses" and just us being together, deciding whether to play more or eat, or eat and go to the room for awhile... just her and I, off away from it all, and how much I enjoyed, watching her do the ONE THING she enjoyed in life, going and having that overnight stay away from it all, and the lights, the noise, and even going upstairs to our room and knowing she was worn out, but in a good way. 

I come back though to my writing. I "express" ALL of what I am feeling, whether good, bad or indifferent through my writing. Passion is there, love is there, frustration, being totally upset, or totally in heaven, whether feeling like I cannot go another step, or excited because I've been given another way to follow, a path to find something else around the corner.

The BEST right now is my TWO PUBLISHED BOOKS! As I work on 2 more, that I hope to finish, those two books published "before I left this world" was such an amazing thrill for me... SO, if YOU want to "know me", read my poetry, writing, my prose, my posts, my blog, and there you shall find "RHIA" - "ME'...
 

 

Friday, November 4, 2016

Day 1 - #HAWMC - WEGO- Health 30 Day Blog Challenge - What drives us to BLOG!? (running a bit behind)

WEGO Health Blog/Writer's Challenge Day 1 #HAWMC


I've been a "driven" writer since I was abut 13 years old. I began writing poetry back then, and a few short stories. I was even the "editorial" writer for our High School Newspaper. I took on a few tough subjects, from "Holes in our student parking area", to giving our students more of a challenge when it came to subject matter and getting us ready for what we would face in the real world; after high school and college.

I continued to write in "handwritten" form, before computers. I have notebook after notebook filled with my writing. I have most of them still with me, and have been able to put much of the material on the computer.

At the age of 14, I had a neighbor who was a RN at our local hospital. I seemed to "soak up" everything that was "medical" in nature. I volunteered as a "Candy Volunteer, I guess then called a "striper" and I stood beside her every chance I had spending all of my free hours learning about the medical world. From watching them deliver babies, to taking care of those babies and Moms, and learning at that time how to "pack instrument" packs, because back then most instruments were not "disposable". We had certain instruments for certain surgeries that had to be cleaned, disinfected, wrapped together, then put in an "autoclave" that sterilized them further to be used in surgeries.

From there, my mind was made up, I would be in the medical field. Of course things change, and I got out of high school early, wanted to go to work, and married young. We had my son 2 years later, but by the time I was about 22, I knew that is not what I wanted for my life. I went on to divorce my 1st husband, and then was a single Mom, with bills to pay, and went to work at a bank in Dallas. Still I was restless because I was not doing what I felt was my calling, my heart's work, and what I was supposed to be doing in my time here. I left the bank, remarried a couple of years later, got some college under my belt, and went to work in a hospital, but in the business office.

Those 6 years there made me know even more that I wanted to find a way to be in the medical field, more hands on, and not behind a desk collecting money from sick people.
Yet, again, even after having an offer from the hospital for them to fully pay for me to go to college and get my LVN degree, at that time, I had two younger kids in school, and was unable to go to school full time, and support my family also. Oddly, enough, I went ahead and took the "entrance exam" to get into the nursing program and passed it as #1! That made it even more difficult for me to pass up the opportunity. I not only had the drive, I had the offer to pay for my classes, then work for that hospital for a year to "pay back" a portion of my college. Then I could have went any direction I pleased. Yet, family came first, and with a heavy heart I declined that opportunity.

I was friends with a woman that was the head of nursing there, and there were days she was almost unable to walk. Her feet would hurt so badly, she could barely stand on them. I found out she had Rheumatoid Arthritis. That and another young woman that worked in the hospital pharmacy, had a type of "stomach issue" autoimmune in nature, that there was little known about, much less on how to treat it, and give her the life back she wanted.

All those years I continued to fill notebook after notebook of my writing and poetry. That was the one "steady" in my life, my writing. I did go to college, and took accounting classes and business classes, and almost had my degree in business. I was struck with Migraines, that were horrific. Over the years they would make me so ill, I would miss work for days at a time. I never "hid" that I had the headaches, but I could not predict when and how long they would come on and last. In fact, I lost several jobs either having to resign jobs, due to missing so much work because of the headaches, and other health issues, including needing surgery on several joints. I had painful problems with my knees, shoulders, hands, and elbows. Again, missing work for surgeries on painful joints, in my 30's that the doctors could not really explain.

I had went to a "pain specialist" long before they were really heard about, mainly to see if he could help the migraines. I had injections into the occiptal nerves in my neck, was hospitalized, had every test available, yet no doctor could put the pieces together as to what was "wrong" with me.

At 40 years old I was an avid exerciser, daily, I ate only healthy foods, watched every pound of my weight, and did everything "right" for my health. Yet on January 8th 2001, I suffered a heart attack.

After that, doctors began "speculating" what was medically wrong, and a huge amount of "stress" was a portion of it. My 2nd marriage although lasted 15 years, put me in a horrific "trauma" day after day, and that stress my doctors seemed to feel was what partially caused my MI at such an early age.

I began to have tests, be able to see better and more advanced physicians, and around the age of 45 I had a young PCP, who finally put the pieces together, along with the proper blood work and finally was open minded enough, to "listen" to me. He found out that I had some "type of autoimmune issue"(s). He sent me directly to a Rheumatologist, who ran more tests, and determined I had MCTD, or possibly Lupus, RA, Sjogrens' & Raynauds.

I had already discovered a whole new era in "writing". Online communities, of people such as I, and that my "writing" could really be helpful through these communities, through my own "blogging" (at the time I really did not even understand what a blog was) and that even though I never was able to go into the medical field to help people on a plane such as a nurse, doctor, or in research. I COULD bring my story as well as a great deal of information to so many others such as myself, that were severely in need of answers, of the questions to ask their doctors, of information on new medications, and through other telling them their own stories.

Thus, my writing and medical "knowledge" finally came together about 10 years ago, and I began to "help" others through my own frustrations and information about the diseases they had been told they had, but were frightened to even ask their physicians for more information.

So, out of my own Chronic Pain, many surgeries, dealing with several autoimmune illnesses, tests and knowledge, was born my own blog, and my own way of helping those who are in such need for someone "listening" and truly understanding their problems.

Sunday, November 15, 2015

Medicare Advantage Plans, Kidney Stones, Pain, and "pain" from life and all we know... trying to find that positive light admist all the negative's....

Thank you so much Tracie L Carlson and Lourdes Villegas-Anaya !!!!   I so appreciate the kind words, and giving me the courage to try and move past all of the nightmare's life can pitch at us, in any given moment. None of us are "immune" to life's way of trying to take us down further each time things happen. Especially when SO MANY happen all at ONCE! I also know that I am NOT the only person on this Earth with a world of problems, and a universe of pain and suffering. I have tried to find a way back to the "light" in my life... although not an easy task. In fact, you are both correct, a great deal of putting up the tree so early, was so that myself and Bub's can find some warmth and spirit since this nation and world seem to be so totally cold hearted and full of so much indignation, terror, and things we usually imagine to only happen far away from us. Yet, that is not true. Whether we are suffering from illnesses and pain, or heart break from those we thought never would cause it, or the loss of someone so special, like Tazz, and my Dad who passed away 10 years ago, and I as I say the "loss" of "oneself" which when health deteriorates so badly, and chronically, it is so very easy to "lose" who you thought you were... we all change and grow, just a fact of age, wisdom (for some), and the way our lives are meant to be... but when you feel as if you have lost your very core of spirit, you inner most power, your ability to see the world with different eyes, trying to not become bitter, and full of loathing, all too often of your own body, and mind.. the fight is not a simple one, nor is being alone to deal with it ever easy either. Even now for me, being in a room filled with people I feel totally alone, and misunderstood. Of course with Tazzy being a Christmas present and was born about the time she passed away 14 years ago, has made the loss of my one fur-kid even more painful. Thank goodness Bub's seems to be feeling better, and after getting his rabies vaccine and getting those terribly long nails trimmed, and without having to muzzle him, :):) I think his feet maybe a bit sore... now he cries for me to help him on the sofa. But, I also realized that he is almost 6 years old! My papers from the Vet said he was 5 years and 9 months old... which I knew he was pretty close to being between 5 and 6 but time has flown by so fast. I look at the pics of him, when I got him home, he was so little, he had a place on my desk he laid... and Tazz the same way, she was so tiny, I could hold her in one hand when we first brought her home... guess that is why that seems like yesterday, and how hard it has been for me to except her passing away.... but I found her and Bub's ornaments, I had bought them over the past 4 or 5 years in the chest yesterday, and they hang on the tree along with Tazzy underneath it... she can too "see" the warmth and love she still has from her home..... And the Christmas Letter... yes I am sure I will find something positive to say, but in that, I will also have to tell the family and friends about all that has happened in the past year. That is why I write the letter, to catch up to family, we do not get to see or talk with very often. So, those letters remain a lifeline from our home to theirs, and from their home to ours. I still have so much to get done... I have to make a decision about my insurance and Mom's - and that is not an easy choice... I came to find out an interesting fact about Medicare Advantage Plans - OUR doctors are NOT the ones who "take" or do not take these types of plans at all. In fact, they have no say so in it.... ONLY the "insurance" companies make that choice... They "choose" whom they will be an in-network provider, and the physicians cannot say no, but they can't have the plans either, unless the insurance companies themselves "choose" them... Now I understand why my hospital is not on the policy we have now, nor some other providers. Come to find out they all work that way... I know I was totally dismayed that NO HOSPITAL within 40 miles of us took the insurance we currently have... that seemed so ridiculous! Well, NOT the hospital's fault... the insurance makes that decision!!!! Now this is mainly for Medicare Advantage Plans specifically, and I do not think it effects like Medi-Gap policies and so forth... thus just because online the companies may tell us that "this doctor" will be covered, by Jan 1st, they can change their minds and NOT cover a doctor we need to see... Talk about a mixed up mess!!! Our dear government at work... I can guarantee you, THE CONGRESS has a huge say over these plans specifically, and they make it as hard as possible, since many of us on them, are below the age of 65, because we are on disability, not "retirement" age yet... Anyway, talk about one messed up situation.... I was all set to go back to Humana for 2016, then I noticed our PCP was not listed as a network provider... thus I asked Thursday while I was there, and come to find out no, but it is because the "insurance" is not "allowing" them to be a in-network provider, not that they do not want to!!! It made me so furious... Humana COVERS our hospitals and so forth BUT not my PCP! And I have no guarantee after Jan 1st, they will "cover" the others they say they will online... it is a huge mess... and for me to try and get a "Medi-gap" policy would be well over 500.00 a MONTH or more... so it is no "win-win" for anyone... except the insurance companies themselves... and "United HealthCare" Secure Horizons SPONSORED BY AARP!!! is the worst! I have had nothing but problems with them all year long, plus as I said they do not cover our local hospital, my Rheumatologist, our Urgent Care Center, which seems totally stupid, and so forth.... anyway, so that is just one more thorn in my side to deal with.... along with all of the rest... again thanks so much, each of you... I did not make it to church again this morning, but I tried to go see Mom yesterday, and by the time I was in the car, I got sick to my stomach, and had to come back in the house, and let her know there was no way I felt like going over... same way today... my stomach is still "not right" but I am in so much pain, again I have to wonder if I don't have a kidney stone... the past two mornings, around 3AM, I awake to horrible and severe lower back, lower abdominal, pain... and down the fronts of my legs... which is usually how I know it is kidney stones... the leg pain, but down my front thighs.,,

Thursday, April 30, 2015

WEGO Writer's Challenge! "You have made it!!!! 30 days and 30 posts! #HAWMC

Wow! What a fast month this has been. I realize I post on my blog daily most everyday of my life. Unless I am sick, having surgery, or out with myself or family at the doctor's I keep my blog very current. Often times more than once or twice in a day. Depending on what I am finding online, there maybe several posts in a days time.


This has been a wonderful and thrilling April 2015! thank you WEGO Health for the chance to be in this "writer's challenge" and I hope to be able to do it "annually" for as long as you offer it. The prompts were fantastic and it really gave me a much broader sense of what to write about. Sometimes as an author and writer, and blogger, I feel I get "stuck" saying the same things over and over again.

So, having another party give me the "prompts" helped to open my mind and heart up to write about some things I may not have thought about. So, I commend all of you for the hard work, for the "tweets" for all of the other writers, bloggers, and authors out there that I have gotten to know over this past month. That is another awesome thing about the Writer's Challenge. I've been able to "meet" new people, and see what they say about some of their own battles with all types of health problems. I thoroughly have enjoyed all of what I've read and I have learned so much from each of you. That in itself is such a wonderful blessing.

Oddly enough, now that we have become an "online" world, where "everything" can be known within a few short clicks on the keyboard, makes our world seem to be a much smaller place than it used to be. So, I may make friends with someone right here in the North Texas area, or maybe someone in Australia. I love being able to know people from other states, and countries. To see how their health care is, how far ahead some are from us, especially the UK, when it comes to Autoimmune Illnesses. They seem to be several steps above us, with new medications, research, clinical trials and more.

It is difficult to pick any one thing about the "prompts" or the entire Writer's Challenge that I could say I was not that crazy about. I felt that you did an incredible job of really making us dig deeper, and really think about different things when it comes to our own health issues.

I loved ALL of the prompts. Of course there were a few I liked more than others. I have to say the "acronym" was one of the biggest challenges. I liked it, but it was one that I guess may have been down on the scale of being a favorite. Yet, I learned things from it also, so it maybe a "less favorite" but I did partially enjoy the challenge.

The product review for me is somewhat a difficult one. I feel that I may not really understand exactly what you guys and gals were looking for. I tend to write and blog more about medications, research, new clinical trials, and so on. So, it took me awhile to decide whether the "favorite" products should be something more on the "medicinal" side, like prescriptions, or more like things we buy over and beyond the physicians, medications and so forth. For instance what I use on my mouth, corners of my mouth, my skin due to the Lupus, discolorations and so forth. Some I am sure have other types of devices that may use, such as a "zipper pull" or something to help get things off of tall shelves, and so forth. I am sure many have types of gels they use for sore muscles and so forth. So, I tend to go into the "mini implanted titanium rods" that hold my dentures on the bottom very tight. After losing all of my teeth within a year to Sjogren's, those have been lifesavers for me.

I would love to see even more types of "prompts" possibly on a more personal level. You already have given us quite a number of those that required us to open up more about our battles with health problems. But, I could see maybe a prompt next year that asks us to open up and tell some of the even more hardships, and things we go through that we may not write or speak about much.

Other than that, hats off to everyone! From all of the gang, of gal and guys at WEGO Health, to everyone who participated in the Writer's Challenge for this year, I commend all on their awesome posts, and what they said and chose to say that truly gave me new insight to myself and other illnesses, medications and how many of us are so "near" one another with our stories.

I loved many of the prompts. The "word cloud" was new to me and I really enjoyed it. The "Hindsight is 20/20" I truly liked. Stress Awareness, "telling someone "off" when they hurt your feelings", and the "travel" prompt was great also. It is difficult to pick one over the other because all of them were enjoyable. 

 I will be so excited to see what you "prompt" us with for next year! "If I am here, able, and still kicking, I look forward to participating in April 2016!!

I do hope and pray that by the time we do this again in 2016, my 3rd book will be completely written and published!!! By the way, that is another thing doing this has helped me with... material to use in my book. It also has given me some very good ideas about what to say, how to say it, and gotten me in the habit of the daily writing. I hope to take that even further, so I can finally finish my 3rd book (my own autobiographical journey) through the madness of chronic illness, autoimmune diseases, chronic pain, and all in between!

Again, I am just elated, yet a bit sad that it is over!

#HAWMC



Again WEGO Health, I've had a blast with these this month! I appreciate ALL everyone does for us as patients! You guys and gals rock!  Rhia

Sunday, April 26, 2015

#HAWMC WEGO Health's Writer's Challenge "How to "Smile" & Try and Feel Better Even Though Things are NOT as They Seem! How to Handle a "Bad Day"

I will attest, WEGO Health and the bunch, you have came up this entire month with some incredible "prompts"!


This is truly a great one also. 5 Tips to overcome" a Bad Day"!

I would venture to say (I guess at the moment I speak for myself), having chronic illnesses and Chronic Pain is almost something "negative" we live with daily. Of course some days are worse than others. We have our "memorable days". Those that we wished we could bottle up, and be able to open and have a sense of remembering them in touch, sight, smell, feel and thought! Of course all of us have those great memories. The idea of truly being able to capture them "hook, line and sinker" as the old saying goes could make them even more capable of giving over to the times when things feel like you are on top of the ever shaking mountain, and could conquer the world.

For me, I usually know very quickly, if I am going to have "one of those days." When I arise from bed, and everything hurts, I realize I have 3 or 4 doctors appointments, things my Mom needs done in that next few days, it is not sunny outside, OR it is HUMID and MUGGY; which brings on even more pain, that is when I feel like crawling under my bed, with my "granny blanket" as I call my favorite blanket with the silk on the edges, and hide for at least 24 hours, maybe more.

So, when things start off like that, I head to Facebook first, to find something "positive", "
funny, strange, thoughtful or whatever some friends have posted, that make me smile because they just have that ability. For instance, I have a dear friend who has a very busy
Fibromyalgia group. She seems to always know, when I need something to smile about. So, often times when it feels like I am "drenched from the fog of a lousy day" she has sent a "bundle of virtual flowers" and a small note to say "I totally get it and I understand". So, my first tip for "one of those days" is to "look" for something positive. If you have a FB page with friends who tend to find either positive things, pretty cards, or something funny to post, go and see if they have posted something. Usually if you scroll through the new posts, you will find one that just "fits" to make things feel a bit better. My next thing is that rather than allow all of that "garbage" to float around in my mind, I write down a list of what has to be done! Whether it is for just that one day, or for the next few very busy ones ahead, by writing them down on a list (I suggest literal paper and your favorite pen) rather than typing them out, making that list helps to put things into perspective. I feel I can better handle it all. I kind of purged it out of my thoughts by writing it on paper with my favorite pen (by the way, no one touches my favorite pen)! So, my 2nd way to make it a bit better is to write a list of what needs to be done, so you can kind of rid your mind of all of the stuff that is floating around almost eating at you.

My next thing I try to do, is take a look at the local weather. As silly as that sounds, once I have down a list of what needs to be done etc, then I want to know what to expect if I am having to go out and have things to take care of outside the house, the weather sometimes really makes a difference. Right now it is "thunderstorm, hail, high wind and possible tornado" time in Texas. So, if there is a 90 percent chance of thunderstorms, that are probably involving hail and high winds, then I decide what things I can do here at home done, and avoid going out in terrible weather. I know the day is only going to be worse, if I am fearing my new vehicle being hailed on, or going somewhere and having blinding, drenching rain, lightening and thunder all around. So, my 3rd thing to make for a better day is to KNOW what to expect weather wise. The weather makes such a difference "physically speaking" also. If I am already hurting, stiff, and feel lousy, then I see the weather has a high humidity, a barometric pressure that is nuts one way or the other, then I can "expect" the pain and stiffness, and "blame it on the weather" or at least partially know for sure, it is NOT helping.

Writing seems to be my way of truly ridding myself of the gunk in life that causes me great grief. So, my 4th idea is usually to write in my blog about all that is really eating at me, or post on Facebook, and ask my friends to keep me in their thoughts that day. Sometimes I just write and not post it. I hold onto it for a bit, to see if I really want to just rain pain down on everyone else. At times a post where I am griping, whining, fussing, and just letting it all out, is perfect for my Facebook page. When I can tell that others are also having a crappy day, pain wise or whatever, empathy goes a long way. Now, when I say empathy, I mean those people that REALLY understand what you are going through. Not the "acquaintances" that don't get it, because they are either not chronically ill, or have chronic pain. But, those friends who are often in the trenches of hell in illness, right along beside you. Or if you see there are other dear friends that are really having one of those days also, then I try and send a post to help lift them up. That empathy, can work both ways. If you are able to put aside your stuff for a bit, and tell someone else you totally understand, and you wished you could fix it, make it go away, or be better you would. Sending a little picture of something cute, or pretty, flowers, kids, beautiful scenery, anything that is positive and just can cut through that bad stuff for a moment, always helps to make me see, "I am NOT the only one having a heck of a day". So, writing and then also uplifting someone else can help me to put my own stuff into a better perspective.

Sometimes for me, since I love to bake, if things are really horrible, and I want to jump off the Earth, I go and bake something wonderful. Getting everything out of my face and out of my mind, and baking does that for me, can turn a bad day into "okay, I can deal". Then there are times, that I will just think to myself, pain or not, fatigue or not, do something constructive. I in fact have been having one of "those days" now for about 2 WEEKS! So, yesterday, as bad as I felt, I cleaned my house. I "swiffered" my hardwood floors, then I mopped them with my hardwood floor cleaner that smells like lemons. I got out my duster, sprayed some lemon dusting spray" on it, and went over pictures on the wall, around base boards, under the bed where all of those dust bunnies hide, and over some of my furniture etc. I am not talking a huge spring clean, but one where you can do just enough, that gives you a sense of you accomplished something in spite of the junk, and take a smell of just how "clean" and fresh your home smells. That lemon smell, or any type of citrus, just makes everything to me smell like a fresh spring and summer day. Plus, I could visibly "see" that my effort paid off. Things looked neater, cleaner, and I moved around stiffness, pain and all, which helped to take my mind off the pain, the stiffness and I got some exercise with it also.


Those are 5 that come to mind at first. Sometimes I just have to get out, and go walk. I may spend a half hour trapesing up and down my long driveway, ranting and raving to myself, about how life had just wronged me that day. Again, any way I can "purge" my mind of "the stuff the binds me" helps to turn a bad outlook around. Some days I take a drive to where my Dad is buried. He has been gone now 10 years, which seems impossible, but I go out there, and in all of the quiet, peace, the sea of colors with flowers everywhere, and I can quietly "talk" to Dad, there comes some peace of mind.  I may take new flowers to put out on his grave and my Grandparents. I enjoy doing that, so it helps to turn the day around also. When things are just ALL out of sorts, and I am dropping stuff, spilling, stuff, hurting badly, and everything I touch seems to turn into a huge mess, I give up, go set on the sofa with my two pups, one on each side, and chill to watch a movie. Having them beside me, and getting my thoughts off of all of the bad stuff, also puts me in a place of, "Okay now I can handle some of this stuff". Maybe I have some kind of small treat. A cookie I love, or a bite or two of a cake, pie, or something I've baked. Others I may go outside, hopefully with my gardening gloves and literally just pull the weeds, and stray grass from around my flowers. That helps to take my mind off of things.

The very best thing I can do, when it's possible, it try and just get completely away for a day or overnight. If I've had some really busy weeks, things have just been too hectic, too full of illness, doctors, medications, fighting with insurance, and there seems to be no end, then I get my Mom, and we go for at least a day visit, usually to the Casino in Oklahoma. We usually have "complimentary" rooms for a night or two. So, if time permits an overnight stay. As I had said before, being able to just totally get out of the house, of out of town, and away from all of the stuff that can just put you into overload, as soon as I pull into that Casino parking lot, and enter the doors, everything else seems so small in comparison. We are not much as far as gamblers, and usually play the "penny" slots, and my Mom likes the 25 cent slots. But, it is the people, we watch others and see how excited they are, or when you here the cheer from one of the tables, and know someone just did well, or just to relax and eat at one of their great eating places, and walk, walk and walk. The one we go to usually is now once again I believe considered the "largest casino in the world". I can attest to the fact, that a lap or two around the entire casino area in itself, not including the three huge hotels, and then the smaller one they call "The Inn", can give you all the exercise you need for a day or so. Plus there are no clocks, no windows, and with all of the sounds, lights, people, music and noises, everything else pales in comparison. I leave there still kind of in a "trance" almost. Even though it is only a day or one overnight trip, it can smooth the "edges" off of life's rigid times.

It will be interesting to read how others rid themselves of a bad day! I know WEGO Health keeps me busy, and they help to take my mind off of the "bad days" also.




















Wednesday, April 15, 2015

#HAWMC WEGO Health Writer's Challenge April 16th 2015 - "Life Goal" - Can you Achieve it ot possibly more than one -

The one goal that I've been working on now since I was about 15 years old, is to be an "author and writer" and have my books published.

That had been a goal that I had committed myself to, back then even as a teenager. I guess I really never gave myself a "time frame", but of course it is something that I want to do, and be able to see if what I write helps to make a difference in someones life.

Of course a "portion" of that goal I have already achieved. I had the honor to have not just one, but two of my books published in 2013. They came out about months from one another. Those were poetry and prose. And each time I hold one in my hand, I am so thrilled at the accomplishment I achieved.

Yet, the #1 goal even in the author and writers achievements, is to finally put all of my "life's journey" through the many things I have done, endured, and certainly will have a up close and personal look into my chronic illnesses and pain. I am working on that book, already have "named" it and got a "cover" for it done. I've gotten many of the chapters already completed, so I am on my way to hopefully completing this goal at the end of 2015 or early 2016. I just feel between my blogging, my activist, and advocacy role, and being an Ambassador, I am "giving of myself" exactly what I am supposed to be accomplishing. But, this book is what I hope to truly make others know for sure, they are not alone, they are not crazy, and all they experience it truly not "acceptable" as far as health goes, and we must try to move forward, to achieve victory over Chronic illnesses, such as "autoimmune diseases and others" and chronic pain.

I never fulfilled my greatest "desire" or goal that I had thought might happen very early in my life. That was to be a nurse. I also dreamed of being able to write my own songs, the lyrics, music, and sing them too. I knew a long time ago, I would never be the next "bright and shining" star of the music world, but I can dream about it.

Of course, I've had to "redo" my "course" several times when it comes to completing this 3rd book. I find myself taking on way too many other things that to me are very important. When I allow that to happen, then I have change my course, and get back on track of what I truly feel is the most important, which of course is this 3rd book. I have already decided there maybe yet another to follow it, and give more insight to things I dealt with in life.

        

WEGO Health Activist Writers Challenge!

 

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, January 11, 2015

Finding a starting point or possibly a stopping point... OR maybe there is no point at all... All in a day of Autoimmune Illness

I've been able to allow words to just pour out of my soul on Facebook, and here in the past week or so. Yet, when I put myself back in "alignment" to begin working on my book, again I lose all of the hope I've had to begin...

It is not that I haven't began... Gosh I've probably written enough for 2 or 3 books. Between here, Facebook, and other places I post in detail all types of my own personal experiences with these hideous illnesses and maladies, to the some times irreparable dealings of some medications, and the problems they can cause... and moreover what is so very frightening I have came to the conclusion that there is something else physically going on with me, that the doctors, tests, lab work, and so forth have not been able to pinpoint yet.

As I've said now for awhile, either there is much more to my health issues that need to be looked at. I realize that many of the symptoms of any of the autoimmune illnesses can really be "overlapping" in nature. It is a defining moment in any life when a physician can give you a "real name" for a certain symptom, or chronic illness. At times the answers are truly vague at best... and the chances of getting a proper diagnosis at the very first trip you make.

So, now the question is, how do I go about trying to find if there is something else wrong, if so what doctor do I consult, and what will happen if there is another AI involved, like MS, MG (myasthenia gravis), and so on? More than likely, unless it is MS, they have came up with some great meds for it, BUT some of them are already things I am taking, or they are so new and so expensive, my insurance would probably turn the noses up and drowned in the rain, if I was prescribed one. You can believe, if it can happen, or will happen, or has happened ... then it has been with me.

I am seriously debating where I go this year on my blog... and if I want to continue to grow my audience then it is imperative that I work it and work well. I don't want to lose who I have and of course I want those that are already coming here to be excited about the new year and what I am going to say... and how I am going to say it.....

So, bear with me, as I take my own heart felt words, and pour them out in different ways. I am trying to experiment on my blog, so I can have a better understanding of writing my 3rd book.

More often that not, (and I just had an idea today, that I think I am actually very seriously considering) it is bad enough for the "same of stuff, day after day, to step into your path of consciousness. Those types of things tend to cause a huge road block  for those of us who already suffer from massive brain fogs at times anyway. Then to try and work around all of it, and have something come out that maybe worth another persons time to read is a monumental task.... so right now, I only know to crawl up the side of this mountain and begin the book.                                                               

Tuesday, November 18, 2014

The Good, The Great, The Days you feel like NO ONE Gets IT!!!! I CANNOT BREATHE

I've just about had it with everything. I cannot stand when someone wants ME to be at their beckon call. But, when I do not hear a word and am suddenly "cut off" it seems, I cannot just hop up and fly off for 3 or 4 days for an event. I am really upset, hurt and pissed that I am "used" when they want me. Then they get me all hyped up to make another trip that is supposed to be the first part of December. Now I cannot get a response by email at all. It is like I am a "stranger" and Don't Exist... but if they need me in the future it will be expected for me to "jump" up and do exactly what they want and when, and fore go the thought that I am chronically ill, and I can't just take off at a moment's notice. And if I find out ANY of my "SO-CALLED" friends have had a thing to do with it, I will really be peeved.... but I can see a couple of them "climbing" the ladder of "fame"... by running over others to do so... anyway, I am just about finished with it all. I am going to take all of next year, or ever how much it takes, which maybe a year, less or a bit more, and write my book. I am sick of putting it off for "trivial" pursuits that now seem like it does not matter much what the hell I bent over backwards to do and help out with. I am no more than someone that is taken advantage of due to the fact of my passion about helping others. Then I am scooped up and heaved in a corner when they are "through" using me. I have been having horrid, night terrors, now for about 2 months or more... and last night really told it all. It was so bad, I was screaming and crying so much, I woke Jim up and he had to come out of the bedroom to check on me. Then it took me almost a half hour to truly settle down and figure out it was a night terror and not real. Yet, it did finally get through to me, when in my nights sleep, I am being put down, picked on, cast away to the sides, and everyone ignoring me, treating me like dirt, so badly that I could not even breathe... which woke me up, because I felt I was literally suffocating... and could not breathe... I am being "drowned" by the very thing I loved to do the most... well 2nd to my writing and blog... and that is my volunteer work... so I am bowing out for the most part, to allow those who choose to cram their "high heels" in my back as they walk all over me... (I saw this when I worked for a woman boss)... petty jealousy, wanting to take over and get credit for everything, taking someone's else hard work and saying it is theirs, and the subject matter goes on and on... well, I am pulling those damned "heels" out of my back, I am going back to write my 3rd book, keep up my blog, and keep to myself... so I may not show up or say as much here especially after the holidays are over. I feel I've been "used and abused" enough, and I am freaking sick of being tortured during my waking hours and it causing me to having horrid night terrors... it is time to get out of that "ladder climbing" crap....

Some of you may wonder why I get "caught up" in all of this. Well, for one thing I take my "advocacy", "Activism", my "Volunteering", my writing, blogging, and being An Ambassador, as well as a "general spokesperson" for those with illnesses, chronic in nature, those that we know will NEVER go away more than likely in our lifetimes, and so my dream is to "build a bridge" to future generations where they WILL have answers, as to why, what, how, when, where... and possibly a way to just say NO, to some horrid, chronically painful, life shattering chronic pain and illnesses. So, whether I am writing a blog post, or posting something in Facebook, or reading someone posts... whether I am "helping" a group, or Foundation... whether I am trying to help several causes and Foundations by "lending my voice and own personal experiences to them, in order to get OUR POINTS across to Congress, to the nation, to our own communities, even to our family and friends, when I am doing any and all of that, then I am serious about my "job". I don't take being an advocate for others lightly. I take it as I am trying my very best to try those out there, that either can't step forward, due to family, illness, lack of funds, or any number of reasons some people can't "lend a volunteering hand". There are those that are "shy", or they are raising families, or they are just too ill, to be able to either go to a Congressman's office, or send an email, and for all sorts of reasons people sometimes are able to get involved in that realm.

I can totally understand, because being a "voice", being assertive, putting your heart and soul on the line to speak with a member of the House or the Senate, or to ask for money for research and development for those who are researchers and may have the golden key some day to unlock and unleash something powerful enough to STOP the pain and suffering of RA, Lupus, Sjogren's, Osteoarthritis, MS, FM, CFS, MCTD, and the other host of autoimmune illnesses, or Lyme Disease, Cat Scratch disease that now has entered as a possible "means" by which some of us "got" these illnesses .... whether that is true or not, we need the people, researchers, money. the backers with funds, the corporations and foundations... the CDC... gosh the list is endless.... but we also need YOU and MYSELF. We MUST put our voices out there... if they "squash" us and tell us to get out, then so be it.... There will be yet another person that may not dismiss our "calling" and is willing to watch, look, and listen... 

I have been contacting my Senators and Representative (Federally) to invite them to an "Arthritis 101" meeting in DC the first week in December. Some of these folks are new to Congress, and we desperately need to "inform" them of just how important our medications, such as biologics, our not being delayed in getting a diagnosis, of getting treatment, and how critical it is for all patients with these illnesses have a fair chance to try and either go into remission, face less flares, not have to wake up every morning of your life, with stiffness, miserable fatigue, pain, and yet another day's fight to see who will when in the end... Will the "illness" take over all our spoon and then some, or will WE remain victor that day, and have spoons left over for the next day.

Life is so very, very, very SHORT!!! Many of us by the time we are about 25 years old, begin to realize that "forever" is not all that long... the 10 years, 15 years, 30 years... it all goes by too fast. We go from completely helpless as an infant, turn around and we are crawling, walking, and running. Turn around again, and we are driving a car, dating, and in college... one more turn and we are parents, raising our kids, and in the next turn they are grown, with kids of their own, and we have been out of high school for decades. You then begin to see "classmates" that are in the obituaries, or their parents are. We see the grey hair where the dark brown, blonde and red was. The wrinkles seem to come on over night. And within a "breath's space". we are as our parents were, feeble, not able to do, go, visit, travel and see the world through those young eyes. Our sight is blurry, our steps softer, and maybe not so sure, and you may even find yourself fighting with illnesses and what they cause, things you never would have dreamed they would happen just a few short years ago. 

I know I've thought back just 7 years ago. Never would I have dreamed I would lose all of my teeth, and need complete dentures. I didn't know I would have all of these implanted joints, many more that are deteriorating quickly, and may need a new implanted one also. Life has just gone by within the vast light and the vast dark, I stood in the gray in between and never gave a thought that I could not wear that pleather mini skirt, or my pleather pants again. I thought I would be in those 6 inch platform heels for many years to come. Little did I know that none of those would be true. That now I try to find shoes that are "pretty", yet they have to be half way comfortable. I can no longer wear some of those mini skirts, and tight tops... and I would never have expected to have a huge bulge our of my right side, where I have an implanted pain pump.  I never would have thought I would awaken to stiffness, pain, and sometimes so fatigued I just can't really do all I want to in a day. I find myself wandering through my own home, through my lists and lists, and wondering how I will do the laundry, vacuum, cook, clean, wash the car, change the sheets, get myself showered, get the pups fed, watered and taken care of, help my Mom with her things, and still need more time to do more things. I have a very difficult time "giving up" anything. Even though, just like here on my blog, or in my new book, I am writing, I HAVE NO CHOICE, I HAVE TO FOR GO something in order to have the time, the stamina, the brain power, to do what I NEED to do and what I WANT to do... and something will have to be put aside. If I had my way, it would be like it was in the late 90's. I could go to college full time at night, write, work full time, take care of the kids, house, yard, bills, cleaning, cooking, sewing, going out on the weekends, studying, and I just never stopped. I had the energy of an atom I guess.... I was a never ending ball of go, go, go, and that included exercising EVERY DAY, walking, go to aerobics, you name it... now if I get the laundry done, have enough time and energy to shower, you can bet before I can finish ONE task, I am exhausted and ready for the sofa instead.... and IT SUCKS...   

TO BE CONTINUED


Wednesday, September 17, 2014

PLEASE Start COMMENTING!!!!

I have lots to catch you up on over the next couple of weeks. I promise I will. I am on a new RA/Lupus medication, that is not a biologic. I will explain what my Rheumatologist told me, and how he has come to the conclusion, that if I can, maybe trying to stay away from a biologic, other than trying Orencia, would help to possibly reduce the number of infections I continue to get. I had been ill from way before Christmas last year, and was ill when I went to D.C. at the end of March! I was having a flare, but I was also I believe even then developing bronchitis that turned into double pneumonia. But, until I was running 104.5 degree temperature and almost out of my mind hallucinating from the high fever (I NEVER have a fever)... thus now I certainly know what to look for if I expect I might be having a new infection coming along.

I am so grateful to ALL of you who come here and read my blog posts. I know you do, and I see who comments and who does not. I will say that up until the last couple of weeks, there was not a good way I could see the comment if there was one, and I certainly had not a good way to see who commented at all, and what they said.

Now Blogger has made some much needed revisions in the Blogger software, and I just have to catch up as to what they have changed, and how I can use what they have done to make my blog even much, much better.

We have a few more things to work out with doctors, finding a "good" pain specialist for Jim and a Neurologist who will take his insurance and take care of problems as they arise. We think we may FINALLY have a couple of good referrals, but we shall see. When it comes to doctors, tests, hospitals, insurance companies, and pharmacies, you never know what the outcome will be.

I am still working on getting my jawbones strong and well enough to withstand the little mini implants that my dentures will snap down on those and be able to let me eat with them in and they not especially the bottom one coming falling out, I am getting there, but it is just taking patience to allow those all to fill in and heal before he can put those implants in and they stay strong enough, and my jawbone strong enough to hold them in. So, I still have at least until November to do X-rays and see where we stand.

I have just completed being a "Consumer Reviewer" that I had been nominated to do and then was asked if I wanted to do it, and of course I said yes. It was a true learning experience but it has provided me with lots of new avenues of advocacy, ambassador, and activist can mean, and how much my opinion and all of our opinions Do MATTER!!!!

On Monday, Jim's birthday.... the 22nd we have an appointment at our lawyers office to go over what will be going on for the depositions. Then on Tuesday we go back in and give our depositions.  Since it is in Ft. Worth, our plans are to stay the night, and possibly go out to eat or something in celebration of Jim's birthday... and who knows... we maybe also celebrating the nightmare of this wreck stuff to finally be coming close to an end... and it coming out in our favor in a very huge way!!!

It is a bit nerve racking, thus I have not talked about it much. I just felt until we are close enough to possibly know when we will know the outcome. So keep us in your thoughts and prayers, as Monday and Tuesday are very significant for us in regard to possibly getting favorable results from the law suit.

I shall put on more tomorrow... as I get some of my other
chores out of my face...


Hugs, Rhia and by the way.. once and again, thank you my dear friend for taking a moment to post here :)                                                                              

Friday, May 30, 2014

Life, Lupus, Symptoms, RA, and Coping... (My Own Pretense Portion 1)

(Portion 1) I began this weeks ago. So, I've decided to post it, some at a time, rather than one huge post... Maybe I, can find some "reasoning" for things that I have questioned through my own writing.... so here it is .... the first portion....



Even though the "title" of this only names "4" items, there are SO many more, that if I posted it all in my title would be as long or longer than my blog post.

Rather than bore myself and everyone else with some title, I much prefer to get right into the "meat", heart and soul of writing this. Many of you have followed my "trail" for a rather long time now. Well, before I had a great deal to so the Facebook, or truly decided to delve into the realms of blogging for a good reason.

As with life, and everyone else, I have underwent changes.... changes in illnesses, changes in life, changes in the way I feel about life, what I want to "accomplish" during the rest of my time here, and we ALL have lists and lists... and if you are anything like myself, I have another list to keep up with the lists. Humans are just that, humans. As I began this, my first portion said we all change our minds, we all have things we have to live with, tolerate, long for, debate, are stubborn about, will give in, and some things in our lives , we tend to have a firm stance, and like that tree with the larger trunk, than any other near it, nothing will move it - not until the heavens and Earth someday are moved.

I've gone through SO MANY "adaptations" since my RA/Lupus/
Sjogren's/Raynaud's.... and oh how the list tends to grow along this past 7 to 8 years. Blood work, physicians, specialists, MRI's, CT's, EMG's, NCS... and it seems those tests with the initials also go on forever. You finally come to realize you are thrilled with you type EMG or any one of the other numerous "initials" for tests that someone, everyone knows what you are talking about! Finally you have found somewhere you don't have to try to type out an entire 15 letter word for a diagnosis or test! Boy, though when you reach that place, sometimes it smacks you right back into thinking, damned this is seriously becoming a way of life. When I know as much about the tests (or at least what those initials mean) as the doctor does, or understand all I am reading about in an article online without having to flip back and forth to "Google" a word, you have reached the point of "Face it, You have one or MORE Autoimmune Illnesses"!

So, we put up with the poking, scanning, tiny little needle like electrodes being put into your muscles, injected, directed, and all types of waves going through you... to this place you think, okay, that has to be the "last one". The last test, the last diagnosis, the last new medication, and NOW finally I can go on with my "life" as I had planned it before all of these turns in the road took place. Guess what? Nope! Not yet! Although maybe, you reach just a couple of things, that need a couple of scans, and only 1 new medication for now.

My body feels like it is on its last "leg"... my mind feels like I have thought every thought that have a been thinking seems as if it leaves me with no other thought that would possibly be "different" or of my own.

I feel submerged in a "vat" of vastness, not knowing if I can breathe or not, do I actually "see" something, feeling something, taste or touch an item, hand, piece of fruit, a fork, spoon, or a human? I am just a wanderer now... wondering as I wander about, never knowing from one moment to the next how to think, what to feel, whether I should "act" normal, or sometimes act as crazy as I have felt in the past two months.

I wished I knew more answers to so many questions that I have "backed up" in my mind. There is this place that seems to be over wrought with all kinds of questions, from things about the wreck, to things about my Advocacy and Ambassador in the Arthritis Foundation.... to my own illnesses... my teeth just seeming to fall out of my mouth due to Sjogren's, and the $8,000.00 it takes to get them fixed.

Even with insurance the BEST I can get would be 60 percent of it paid. Yet, that means trips to Dallas, multiple trips... whereas I already have enough trips there due to the Lupus and RA. There are all of these "new" symptoms, yet I have not been able to be given "why" they are here... why am I so terribly weak, why do I find myself more stiff, and feel as if I can't walk very far without falling... why are all of those happening...

Then there are the brain issues, the forgetfulness, the fogginess, the ability not to spell correctly, and the problems typing that I never seemed to have found out as to why... and I fall asleep all the time... I can be having a conversation and I fall asleep.. I try to watch a movie and I fall asleep... I have found myself just standing on the front porch or deep in thought in the yard and I have literally stood there and basically fell asleep standing. It makes no sense... some seem to think it is lack of sleep for me, but I get more sleep now than I have in a very long time. So, I cannot fathom it being a "lack of sleep".






























                                                             

Monday, June 15, 2009

A long winded post as I turn another page in my life..

sMy Dear Friend.... (some of this is about a group I have on the Care 2 website.) So, if pieces of this do not make sense, you will know it has to do with my Power over Chronic Pain and Illness group there... if you care 2 (now that was a play on words) :) know about Care2, the petitions, the news there, the network of incredible people... let me know and I will send you a link... there are thousands, millions of people on there daily trying to make a difference in all aspects of life for everyone....

Here goes.... thanks in advance for reading this... my best to each of you... you are a huge part of my inspiration and life....

Happy Monday and Good Week to everyone. I have been contemplating some things over the past three weeks or so, and am now down to making my decisions and moving forth with a couple of things I feel I am compelled to do, in order to truly feel I am making a difference in my own way.



Many of you already know I am a strong voice to try and help get laws changed, get Chronic Pain and Illness helped out with new research, with new laws, with proper training of patients, caretakers, doctors, and all involved. I am trying to debunk the "myth" in those with Chronic Pain. We are NOT a bunch of "drug-seeking" low lifes, that frequent doctors and ER's just to get "High". The majority of those like myself with Chronic Daily Pain, and Chronic Illness, just want our medications, we do not want to haggle over getting them with the insurance companies, with doctors, with the pharmacies, and with stupid laws that tend to make us look like we are horrible, terrible individuals. Thus much more needs to be done about the entire medical and health situation of all, but moreover, all of the stigma of having Chronic Pain needs to get reeled in. Yes, there are those that "abuse" the system. There are those that are not in pain that do go to doctors, go to the ER's and so forth for the wrong reasons. Yet, staticists show the numbers of "abusers" are extremely low, yet millions of people try and cope with their daily life, in horrible, excruiating pain, that harms their jobs, their relationhsips, families, and leaves them with little or no quality of life.

I am also an avid voice Against Domestic Violence, and Violence against Women and Children.. well honestly violence of any kind... but I stood in the fires of Domestic Violenc for far too long in my life... I was one of the fortunate ones, that did finally get out, but the scars in my mind, and on my heart, still remain at times.



Due to my Chronic Illness with Lupus, and Mixed Connective Tissue disorder, I also am an activist to get much more done about these life altering diseases. There has really not been any quality of studies done on Lupus in 40 years! You will read things here and there, but even though the rise of Autoimmune Diseases is rapidly increasing, we are almost in the stone ages in some ways when it comes to these illnesses (Diabetes 1, Multiple Sclerosis, Sjogren's, Lupus, Mixed Connective Tissue Disorder, and there are literally 100's more), and even my own Rheumatologist will admit, there is still so much not known about these illnesses and disorders. I just read an article about another "new" autoimmune disorder that children are born with, and it can affect them as quickly as after they are two weeks old.



Many of the autoimmune illnesses, are NOT that your immune system is "failing" and not working. Actually, like Lupus, my autoimmune system is overworking to the point my own cells are attacking themselves. Medications are few, and the majority of them carry side effects that over years can be worse than the disorders themselves. Corti-Steriods such as Prednisone is a huge one. It is almost like a miracle drug, when I have a Lupus "flare" yet the long term side effects can be awful. We have made much progress in the realms of Rheumatoid Arthritis, so that is great news. There is much research, many more new medications, and effective treatments to help deal with the daily symptoms of RA. Yet, as I said we lack much when it comes to many of the other autoimmune disorders.



Some of you also know that I am a writer and poet, "in heart". I have felt that my "mission" here on Earth since about the age of 13, is to touch others, and help them through life altering situations, by my poetry and writing. I was blessed with a wonderful gift, and I have tried not to allow it to go to the wayside. Yet, there are times in my life, my own "muse" per se, gets in the background, and I get caught up in other things of life.



I have been contemplating for years now, about writing a book or books. I even submitted many of my thousands of poems to publishers, and do have some that are published at a couple of sites online. I have been told my many, that my writing, the compassion and empathy that shines through my writing, and how I touch some is incredible. I only know and say this not to be patting myself on the back, but rather I know this, due to those that write me and tell me just how much my words encourage and help them. I even had one couple ask permission to read one of my poems at their wedding.



About 6 months ago, after having a long dry spell of not writing much as far as daily journaling etc., I made a vow to myself, that no matter what was going on, how I felt physically, how busy or not busy life was, that I would write daily, even if was junk.



To get to the point before running out of room, I am now making the desicion to split my "time", possibly do away now for some things I am doing online daily, and put the majority of my mind, heart, soul and time into writing my first book. I have contemplated what type of book I would write. Yet, from what others have said to me, along with my own husband & family pushing me, I will be writing my own life journey, through the abuse, the illnesses, the pain & suffering... tell my story, in the hopes that if I touch one persons heart, my "job" here on Earth shall be completed.



I am telling each of you this for a couple of reasons. First, I ask each of you to keep my in your thoughts and prayers, as I take a trip down memory lane. Some good, yet some not so good. I know there will be an outpour of emotions for me, as I tread through my heart & head. I also am having to choose what I will put on the backburner during this time. I don't know if it will take me weeks, months, or a year to write.

I have written since I was 13, yet I have no idea of how much time I will need to finish the book. I am also already looking into how to get it out to the public. I may try and send it out to publishers, but more than likely, I will try the self-publishing route. There are some really good self-publishing companies now, and they help out with promotion, and so much more. The expense varies, but I could save up the money to go with a self-publishing situation.



Here is where my main point of telling you this comes in. I am going to have to as I said in the first post at the top, put some of my efforts, causes, and pieces of life, kind of on hold during this time. I do know I will need to really focus much of my effort into the book itself, so that means less time on my blogs, websites, activist actions, my group here, and so forth. I really am having a difficult time with the entire "time" issue. I also have my own health problems that I never know how I will feel from one moment to the next. I can be fine and in a matter of hours, be in a full blown Lupus Migraine, be totally and completely fatigued and in a Lupus "flare"... plus a growing list of new symptoms that continue to crop up weekly it seems. I, along with my doctors, try and say it is all about the Lupus that is causing issues, yet a part of me feels there could be much more going on, other than the Lupus itself. Yet the symptoms mimic so many other illnesses, so I never really know.



One thing I know I will continue to work on, is my group here, Power Over Chronic Pain and Illness. I would love to have a couple of "co-hosts" that could say hello to new members, post information about illness, pain, and other subjects such as Domestic Violence.... and as you all know, I tend to discuss whatever is on my heart thus it could be anything from politics to gardening



So, if you feel like you might want to help me out here at Care2, with my ongoing group, I would love to hear from you. The group is relatively small now, but I would love to see it grow also. Yet, if I quit actively being here, I know for a fact, it would dwindle and be gone. Tis the life of being actively online... things are so lightining fast when it comes to blogs, groups, the internet, and technology. I also have a couple of other projects, other than being online, from quilting and crocheting, to our new garden, and all of my recent houseplant family I have purchased. Each of those things take up quite a bit of my time daily. Watering, feeding, keeping bugs away, and all that comes with having real houseplants, and gardens, plus daily errands, bills to pay, laundry to do, shopping, cooking, cleaning... darned I am tired just thinking about it.



As of yesterday, I got my software in order that will help me in organizing what I need for the book. Characters, chapters, thoughts, and all that I will need to get very organized first, the software helps with that. From there, then the actual book writing begins. So, my first things is deciding what I have to leave off my schedule, how long per day I will write (waxing and waning depending upon my health, doctors appts, and such)... then I have lots to learn about this book writing software. It is extremely detailed, and has lots to offer, yet it will also be a huge learning experience, to understand how I can use it to actually get my book completed.



I will tell you, my time will be limited here. Rather than spending 3 hours plus here daily with all of your incredibly emails, cards, posts and so forth, I am not disappearing, but if I happen not to answer an email, post or something for a day or two, you can be sure, I have read it, or will, but I may be a little slower in answering. I probably will hand some of the gardening, watering and such over to my husband. I will not be able to spend as much time keeping up with all of the petitions, causes and so forth, but more focus on just a couple, more about Health Care issues, and Domestic Violence. I also intend on keeping my group here for now, yet my "Myspace" and Facebook pages, may not get as much updating of information as they do now. Plus I have a couple of Yahoo groups I am a member of, and I will put those kind of on hold. I intend on telling everyone that I email etc. about my intentions. I don't want to lose any friends throughout this, so I want all to know my plans.



As I start to learn this software, pick and choose my times for activities, decide what to take off the stove for now, and so one, I ask each of you to please post or email me with suggestions, tips, what you see as something I could benefit from, help me get organized as far as my causes and times... and the book... and anything you feel that I probably have not throught about... that would help with time and so forth....



LOL, as I think about what I am writing here, I have to wonder how the heck will I fit everything in, even though I am cutting back things. I am sure as I begin the book itself, all will fall into place... I will fall into pace.. and even though it may never be published... it is two fold for me. I am encouraged by many of you, my family, and others that I can do this, and I do have something to say, that could help others.... and then I can prove to myself, I am capable of writing an entire book. It may not be an awesome book, but I can write it... start to finish... and learn a great deal about myself, life, and writing in the process.



I close this for now, since it is already a small novelette... in asking again, for your thoughts and prayers as I begin this endeavor, for any suggestions you may have, if you care to help on my group, please let me know... anything you feel might benefit this cause will be so incredibly appreciated.


Thanks again... and please keep in touch.... Rhia




"We can judge the heart of a man by his treatment of animals."
- Immanuel Kant, German philosopher

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