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.

Hoping that 2017 "pushes" out all the grief, sadness and illness and brings peace, wellness and secuirty to myself and everyone!

I have been "quiet" - but I had more terrible stuff going on... Bubba my Chiweenie, got suddenly ill, and passed away in my arms night before last. All of the loss surrounding myself and my family is really taking its toll on all of us. I've had all kinds of complications, from the anemia, to a huge hematoma just where the surgery on my hip was done. I look "deformed" because that hip looks like it is 4 times bigger than it should look, then my liver enzymes and lab work was high and all messed up. 

Then I still have this place on my right foot that I swear has to be fractured. I cannot stand to put any weight on it, which hinders my therapy for my hip. I just want things to get back to some kind of normal so I can go home. Even though everyone is extremely nice here, I don't want to stay one moment more than I have to. I had hoped I would be home by January 1st, but looks like that is not happening. My doctor wants to leave the staples in another 5 days or so, due to the large hematoma where the surgery and the staples are... 

PT is going fine, other than me having such heck with that right foot. They re-x-rayed it last night, and the woman doing the X-rays showed them to me, and said she was not the doctor but it didn't appear to have a fracture, and she mentioned a bone spur... but I still insist that due to the pain, the "redness" where it hurts and the pain and swelling from it kind of around and down my foot, something is wrong, and they have not found it. Anyway, wishing everyone a Safe and Happy New Year's eve and Day... I hope is 2017 brings more happiness, peace, and security, and wellness for myself and everyone.... Rhia

Thursday, December 29, 2016

How to Move forward with severa Systemic diseases, Lupus, Sjogren's, RA & knowing when everything feels so out of sorts, even with the New Year Upon me....

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.

The latest is I have a huge hematoma where the surgery was done on my hip. I knew it had been looking like a I had "2nd hip" and was sticking out but I just thought it was swelling. But when the nurse went to put a new dressing on it yesterday she found it was much more than swelling, and they took pics of it, and sent them to my doctor. Sure enough it is probably a  huge hematoma, and they are putting ice packs on it 4 times daily, and I won't even get the staples out for another week.

My foot still hurts and I still think I have a hairline fracture in it. I guess I should ask for it to be X-Rayed again. I am just so sick of being poked and prodded on, I hate to say that anything hurts.

I have to wonder if anything in my life will ever become "normal" again?

Friday, December 23, 2016

Perspective....during the rough times of life....

As I sit here in Rehab after a bit over a week since I fell, broke my right hip in 2 places, had surgery, and all within the holidays, I am so full of mixed emotions that I m not sure how or what I feel. I look around at everyone patient here. and ALL of them I have seen so far are at least 12 plus years older than me. I must say the entire staff are great. from the nurses to be rehab gals and guys. We had a really good morning in Rehab this morning, even had one of the guys playing the guitar and singing Christmas songs, and many were joining in.

 I wish all of you a Blessed and Safe Holiday - the weather appears like it may not be the greatest so all be careful if you are driving ... be sure to watch out for those in too big of a hurry or already have had too much "holiday cheer"... My Greatest Hope for the days ahead are for everyone to be at Peace, Harmony, and learn how tolerance can balance out life, and give all a better perspective of people, all people surrounding you daily that we are all the same... all pure humans, in an "Earthly World" that sadly has gone astray from their viewing others with new eyes and a renewed heart.

Monday, December 19, 2016

I FEEL totally CURSED!!

Most of u already are aware of my situation. Thank U ALL fir th well wishes, thoughts and prayers. When I am a bit more out of pain I will post more. Worried about my r. foot, think it may have a hairline fracture, so we may be going for another X-Ray This really put a kink in the holidays, and me having neck surgery. I will not be able to have that done now until the hip is healed more.... I am going to try and still write,blog, and do my advocacy work Again to you that have been so supportive to Amanda, Jason and myself - you guys and gals rock - guess this means my dream of snow skiing 1 more time in my life is over darned it..

Yes, this has been quite a shock to everyone to say the least. I WAS SUPPOSED to have cervical neck surgery BEFORE the end of the year. Last Tuesday, about 9AM or somy daughter, & I were on the phone talking. 

I walked out to the front porch, to see how"cool" it was outside & then walked back in the house & was going to step over 1 baby gate I have up between my Living room and bedroom. I have several up to keep the dogs out of places they just don't need be. I started over the gate & the toe of my shoe caught either the tip of rug out of the living room, so it is all hardwood floor right side, from my head/neck to my toes. 

It hurt so badly I dropped the phone & I WAS SCREAMING to the top of my lungs - I HOPED it was just sprained badly...but I got the phone , told Amanda to let me try and see if I could find out what I had messed up. I remembered that I had my crutches in the spare bedroom & also an extra rolling desk chair back there also. 

So, I put my heavy robe under me & was able to scoot a little at a time to that room. and then get up on the chair,grab the crutches & with my left foot I slowly rolled myself to the office.By about 2PM I KNEW something was broken but honestly I did NOT want to admit it. So, when the pain was unbearable 

I knew I had to call 911. I had no choice so, I made the call. Sure enough the CT& X-rays confirmed 2 breaks in my right hip. The Orthopedic surgeon , (Dr. Roye) who had also done surgery on my left shoulder & elbow, so he is familiar with my physical ailments. I can say this is the very last ordeal myself and my family needed- after losing Mom about 6 months ago.

 when it rains, it pours......

Friday, December 9, 2016

WEGO Health Blog Challenge for Monday 28th, 2016 - 5 Challenges and 5 Victories

Challenges and Victories (the WEGO Blog Challenge from November for Monday 28th, 2016)

As many of us have faced, it always feels as if the challenges tend to stick out stay with us, rather than the victories. I feel that is more likely about "Human Nature". As humans we tend to "dwell" on the things that feel lousy to us.


As far as "Challenges - the 1st Challenge was truly facing the fact, I DID have not just ONE but "several" possible Autoimmune Illnesses, of which any or all, could cause all kinds of havoc in my life.

2) Facing the tests, all the labs (my 1st go round with lab work, they took 18 TUBES of blood, I am a difficult stick anyway but had to go back 2 or 3 times because some of the blood did not get to the lab quickly enough and was ruined before those tests could be ran.

3) How many so-called "Rheumatologists" do NOT have the "same thoughts and mindset" on Lupus, RA, Sjogren's and all of the other Autoimmune disorders. I found that some did not deal with "ALL' but possibly only dealt with one or two of them. I also found out that MANY doctors (specialists) ONLY went by "blood tests". IF you did not have a "positive lab on RA for example) some of them really were not convinced there was a "sero-negative" RA. I went through at least 7 or 8 Rheumatologists BEFORE finally finding the Rheumatologist that fit my illnesses and needs.

4) Trying to "find" the right medications, then trying to get the doctors to allow me to try them, and the insurance to pay for them, and then finding that medication or medications that even worked for my particular symptoms.

5) Losing my own "caretaker", then becoming a caretaker twice, all the while letting my own illnesses, continue to deteriorate my joints, and body. After putting off surgeries, now I facing further degeneration of my cervical and lumbar spine. I've come to find out that losing all of my teeth, all of the joint replacements, surgeries, many of my other illnesses, are ALL due to the autoimmune diseases and medications also. It seems there are so MANY different health problems that can be caused by AI diseases and/or the medications.


1) Finally getting "diagnosed after MANY years of not one physician "getting" that it was Autoimmune related issues. 

2) Becoming aware that I was able to take my illnesses, become a "voice", advocate, Ambassador, for some of these, and that my blog, writing, and my books; along with Social Media really gave me a chance to MAKE A DIFFERENCE!

3) Getting to go to Washington DC in 2014 with the Arthritis Foundation! That was a dream come true. All my life, I had said I wanted to stand on the White House steps, and TELL MY STORY! Basically that is what I truly was able to do. I was able to "tell Congress" what my own personal journey through hell and back was like.

4) Finding the ONE Rheumatologist who has helped me, along with my Primary Care Physician, who Thank goodness was the physician who actually "found" my Autoimmune Issues.

5) Continuing to be able to slowly but surely "move forward". At times these diseases are "dammit the hell" bad, and put me on the sofa for even a week or more. BUT, so far, I am able to put one foot in front of the other each day, and even though the pain, and all of what comes with these illnesses can get horrible, I so far am able to do some things myself, realize when I can't, and be "smart enough" to admit that I need help with certain things. 

continuing with another "Victory"

For the most part, I feel "fortunate" to have somewhat of a "victory" over whatever happened to me in 2010, when I was so extremely ill and in the hospital for over 6 weeks having several surgeries, even a 2nd Heart Attack, yet survived to come home, take months to really "get better" and still be here right now to "tell about it"!! 

Thursday, December 8, 2016

My "Annual Christmas Letter for 2016" such a different twist on this past year.

                       “The Steele’s” Annual Christmas Letter 2016 - by Pam Steele 

I have tried to set down at least 10 times and start this Annual Christmas Letter. I've been doing them for many, many years, at least 25 or more. I send them out with my Cards, to family and friends especially those that we don't get to see much anymore.
With what happened for the at least last 6 months of 2015, with the abscesses and cellulitis in my thighs, then my internal pain pump "failed" and it was the last week of the year, December 29th before I was well enough and clear of infections to have the pump replaced.

I did well, and Mom had been giving me certain "signs" for at least 18 months or so, that her "memory" was just not as it used to be. Of course she turned in 80 years old inn August 2015, so our minds, including mine are not what they used to be. Yet, I was with her, or talked to her everyday. I noticed more and more certain things she said, she did, she did not do, and the way she seemed confused at times, really concerned me.

I began to notice her "telling stories" that she absolutely believed happened, and which seemed “odd” at the very least. Yet, what she was telling, just seemed to not at all be something that really ever happened, or would almost be "making-up" portions like she was not sure about all of what she was saying,

I had already fixed everything(bills & such) and it just paid out of her account. Before I did, she made out checks, and did not sign them, or could not "recall" how to spell something such as "one hundred" etc. In January this year, I was getting more concerned by the day. She became to falls. One time, she fell out of her chair in the living room, could not get up, did not have the cordless phone anywhere she could get to, and I felt like she laid in the floor at least 8 hours or so, because I could tell she had cushions under her head, and I would ask her Mom, how long have you been there? She would say, at least 3 or 4 DAYS! No one ever comes to check on me! Well, I had been by the afternoon before. Plus I had talked to her on the phone about 7PM or so, and she was “fine" that same evening earlier I felt like she got up in the night, sat down in her chair in the living room, maybe to get a drink, or sometimes she would have a bad dream, so she would get up, roam around in the dark basically, then sat down in that rocker, fell asleep, and fell out of the chair.I had already gotten onto her about NOT keeping that cordless phone with her at all times, and the doctor even suggested a cell phone or an alarm around her neck. Well, I bought one, and she said she did not know how to use it, so I gave that idea up quickly,

Within about 4 weeks after seeing the doctor, she began to "regress". It was very rapid the way, she went from being able to drive, clean her house, cook, and buy groceries. By the middle of February, she called me and said her "car" would not start. I tried to ask her what she was doing, and I knew she was NOT turning on the ignition, so it would NOT go drive or reverse. I had to jump up, put clothes on (this was early, like 8 or 9AM, she wanted to go to the store) sure enough, I go over, open the door, put the key in the ignition, turn it and the car starts, and I could put it into the gear. She was MAD thinking that "I did something". Yet, she just could not recall how to turn on the ignition, and drive. So, immediately I took the keys away, and within a few days, I would go over, and either she could not "light the oven", or she forgot how to use the television. She told me she did not "care about" television anymore. But, she used to watch shows late at night, when she could not sleep.
She could not dial a phone number a number was "messed up" because there was no way she could dial it. So, if I did not call her, or go over there every day, usually several times, I was stressed over what she might do that could harm herself or worse, so I had to check on her.

I had been scheduled for neck and lower back surgery and rescheduled about 4 times from March till May. There was not way I could trust her, even for a day without me going to check k on her, so I turned off the gas to the stove, to the heater, it was not cold anymore anyway, and then she just stopped eating. She began to lose weight, and nothing fit her. She could not take her medications correctly, and would either take them twice, or not at all, mostly, not at all. I even had them in a holder, but she did not know what day of the week it was.

By, May, I had to have help, Her doctor gave us a "script" for home health. The more I was at her home, I began to notice, that the house, that always was spotless... things she would never let go or get dirty, were terrible. She had not been sweeping, the bathroom was terrible, and she had ants everywhere. It took me weeks to finally get rid of all of the ants.
By May, Mom became mainly bedridden. She was "barely knew where she was, who she was, who anyone was", she would not even get on the bedside to clean up, or to get on the portable potty. Then anytime the nurse, the aid, or even I barely touched her to get her cleaned up, she would CRY and fuss, and say were were abusing her and that “I” should be ashamed of myself ofr allowing this all to happen.

She fell again right at the 1st of June, and the nurse for the home health wanted her to be taken to ER. I said NO, her wishes are NOT to be transported, nor on medications or machines, she did not want any tests, no blood work, she just wanted to be left alone. But, that nurse called the ambulance, and after much griping, I let them take her, which was a mistake. They did NOTHING for her, kept her overnight, in a bed, no medications, nothing. They sent her home the next EVENING, now this was like 7PM after being at the hospital all day long and no one doing anything, and then they expected ME TO GET HER UP TWO STAIRS, INTO HER HOUSE, AND IN THE BED BY MYSELF!

I almost fell, she almost fell, and it was the last time I heard her "laugh"... I said MOM, dammit, YOU HAVE TO TAKE TWO STEPS UP, then I can get the walker, and between it, and me helping, we can get this done, BUT I cannot carry you up these steps, and if you fall, I fall, and we both will be in deep "do'do"! She actually kind of giggled, as the neighbor saw us, and she came to help, and we made it in, and made it to the bed. But, I really hurt my neck and back again, and felt it when I did.
It was exactly one week later, on a Thursday morning, I went in to give her the medications "Hospice" was giving her as comfort meds... and I knew then, she would not make it through the day.
About 10AM, something just told me to go in there, and by now she was not responsive at all, nothing. So, I sat down beside her, on the left side, took her tiny frail hand in mine, and began singing 3 Hymns that she always loved to her Dad sing.

I finished the last few words of "Pearly White City", she took a breath, and she was gone.
Oddly enough, the Hospice Nurse knocked on the door within a few minutes, so she came in, took Mom's "pulse", they must check it for 5 minutes before they can "pronounce" them gone. She called the Funeral home for me, and once they arrived, I left and went to "Urgent Care" myself. I had been sick for two weeks so, while I knew I had that time to go and take care of me for a bit, I did. I had already bought her a blouse, and pants, and I took those to the funeral home, picked out the casket, etc. and began to try and "decompress" from all of the shock of it all.
From there, of course family called, and friends, and those who needed to be called.
The service was perfect. I could not have asked for anything that fit any better than how it all came together.

There are still loose ends to work on, decisions to be made, and I hope that I will be able to "finish up the year" having either my cervical neck or lumbar spine surgery.
It has been a year, that if I tried to explain all of it, and the emotions, feelings, and so many things that I've been through, there would be no way, to truly give you real look into how much it all changed me.
My hope is that each of you, your families, friends, and this nation can find a solution, to PEACE, here, and on this Earth!

If I have wished for anything, PEACE is on the top of my list for all,

With my love and Merry Christmas, My prayers are that 2017 bring in light, love, laughter, and a life that is truly in “satisfaction".... along with hope, & a renewed faith and knowing what matters For as I experienced the moments of life are truly fleeting and precious

Rhia and her two "fur-kids" - Bubba and Peanut

Wednesday, December 7, 2016

When Lupus, RA, & Osteoporosis is taking over Trying to Feel Like Catching Up on my Own Health Issues, Surgery Upcoming on my Cervical Spine and Lumbar spine soon, and everything else that "can happen, will happen" to me

I have been gone for the most part off and on, and also doing a great deal of stuff around the house the past several weeks. 
I have also been battling being ill myself, not knowing whether it's been another flare with the Lupus and RA, or everything else, from a stomach bug, to allergies, and this ever changing weather is NOT helping us either. So, rather than go through the entire ordeal, yes, I've been under the weather since before Thanksgiving, off and on, with a probable Lupus flare, but my cervical spine issues, and my lumbar/sacral spine problems have came to the place I can no longer put off surgery. 
SO, FINALLY YESTERDAY, I did go to Dallas, to my Orthopedic Specialist, to tell him what has been going on, and that I've developed "more symptoms and problems, especially when I was having to take care of Mom, I had done something back then, and also outside trimming trees etc, that BOTH my neck and my lower back need HELP! "HOPEFULLY" HE WILL be able to get me in there, scheduled and get one of the surgeries done before the end of the the year. 
Not that I am looking forward to holidays and surgery, but before all of the new year deductibles and so on roll over for insurance, I feel now is the time to get at least ONE done, and then face the other early next year. I know he thinks we need another CT Scan and I wanted to tell him NO, because I've have way too many, they are expensive, he SAW my NECK DAMAGE ON A REGULAR X-RAY last time I was in there, but I also know due to insurance and their bull, plus he can see if here is NEW damage and be prepared with the right things he needs in surgery to "repair" whatever all is there, so wish me luck. 
I do not like the WEATHER BUT we have been fortunate up until now NOT to have horrible weather as far as cold, dreary mess, and that makes it harder to have to go to Dallas for surgery, and then get home. I am hoping my son will be able to take me, and he said that he is now where he can take me, so if not I maybe calling on one of my close friends to take me up and get the surgery done. It will be one that I should go home that same day, IF it goes as planned and he does not run into further complications once he is in there and can tell what all is happening. I will keep you posted as I can and let you all know what is happening.... Rhia

Saturday, December 3, 2016


The WEGO Health Patient Influencer Network is made up of thousands of health activists who are all working hard to raise awareness for their condition area. The people in our network are making their voices heard and we're here to amplify those voices by supporting them with amazing opportunities.
We created the WEGO Health Activist Awards to:
  • Recognize patient influencers who have become leaders among leaders
  • Connect patient leaders to each other, across conditions and platforms
  • Give a big "Thank you!" to all the leaders impacting lives
Many times, these hard working individuals go unrecognized but we believe these individuals are the innovation of healthcare and deserve to be celebrated for the change they are creating.
We celebrate health activists across all condition areas and with 14 award categories, there is something for everyone!
So support your favorite community leaders by joining us for our Awards Week celebration, December 5th-9th, where we will be announcing our 14 winners and hosting a week full of tips, tricks and tactics to improve patient advocacy efforts.
Be sure to check out all of our 2016 nominees- it’s no wonder these awesome activists were nominated!



Here are the schedule of Events for the Annual WEGO Health Activist Awards!

Prizes, Fun, Support for WEGO Health and ALL of the Advocates and Activists that make this event, AND WEGO HEALTH MOVING FORWARD TO CONTINUE TO HELP ALL OF US, THE PATIENTS!

Tuesday, November 29, 2016

WEGO Health Blog Challenge Day 27: Sunday 11/27 Sunday Selfie! OMG and do not be "shy"? I scare the neighbors most mornings!!

This is my favorite "Selfie of mine" In fact, I am going to have my stylist cut it like this hopefully this week, and will put the Burgundy color in it. My hair is blonde, so it does not "hold red" well... but within about 2 to 3 weeks of washing, it will be the "highlighted blondish red, which I love)

WEGO Health Blog Challenge November 27th Sunday, 2016

Sunday WEGO Blog Challenge - November 20th 2016 - 20th BLOG POST! What has been the Highlight of my Actvist Journey So far?

Sunday WEGO Blog Challenge - November 20th 2016 - 20th BLOG POST!  What has been the Highlight of my Activist Journey So far?

Out of ALL the things I've learned and gotten to do that were highlights in my activism so far, going to the Arthritis Summit in 2014, to do my dream (Stand on the White House Steps and tell my Story to All of CONGRESS) I must say has so far been the real moment that I felt that I WAS MAKING a difference!

Being a writer, since the age of 13 years old, I had two goals, one to have a "book published". I told my kids that if I never got to "see" that happen they had to promise me to try and get at least ONE published. Thus in 2012/13 that goal came through twice! With the self-publishing and I used Amazon; although still a great deal of work, if you want to be frugal yet get your book(s) out there, that was my way to go,

So, I had many poems, short prose, and had began on my story several times. I wanted to tell my journey throughout the chronic illnesses and pain, but also some other very personal terrible things I lived through. I am a huge advocate for Women's Rights, and not being subjected to abuse, rape and such. A piece of the book will include that, plus my journey that began in TX, took me around the Western part of the Nation, to live in Lancaster CA for a short while. Then I came back, and went through an entire series of events; honestly a role of changes, that I am proud I got to go through. Without those, I am not sure I would have survived and been here this morning to be blogging this.

After several years I literally made a circle, and came back to my hometown. That was the one thing, I had hoped I would not have to do, come and stay permanently here. It held many lousy memories, and times that I did not want to face again. I had "been there, done that" and was so hoping all of that was behind me. I can tell you, life just like a wedding band, or the moon, is always a circle. Many of us do exactly what I did,

So, I lived to see two books published, and although they are not "chart toppers" I did get to live that dream.

I desperately needed something in my life, once again that I felt would truly help to change things for others, make a difference, and since I always wanted to be in the medical field, the entire "medical research", being a voice, advocate, activist, and Ambassador, in the realms of what I felt may do just that.

Long before I really "got extremely chronically ill" (I have lived with severe Migraines and joint problems since I was 17 years old), I kind of viewed an "activist" as someone standing on a sidewalk, or on the steps of some place, shouting, screaming, making waves, and that was how you tried to get your point across.

As I became aware of my ongoing health issues, I began to view the act of being an Advocate could be anything but "picketing", and there was non-profits, individuals that especially due to Social Media and the Internet who were making changes in so many ways, but especially when it came to Chronic Pain, Chronic Health Problems, from Autoimmune Illnesses, to Heart Attacks, to Degenerative Joint diseases, and MANY others, such as Fibromyalgia.

I began asking questions, researching some of the non-profits, looking for groups on Facebook, and saw that MANY of these types of opportunities are out there, and in TOO MANY when you are someone who would like to DO IT ALL!

I found out more about the Arthritis Foundation, through Tiffany Westrich-Robertson who had started her own "non-profit" more specifically for "Autoimmune Arthritis Diseases" such as RA, Sjogren's, at the (IFAA) - The International Foundation for Autoimmune Arthritis". She really began, along with the other advocates there taught me so much about getting into the organizations I felt were the "best fit" for what I wanted to try and accomplish. Thus the Arthritis Foundation (plus I still do Activism) for several other places.

Shortly, right after I attended my 1st "Ambassador Meeting" via the Internet and Phone, I found out that there was a possibility I COULD GO TO TELL CONGRESS MY STORY! Well, those that represented my District. The one person that did that happened to have been from my own home town, he had worked for the same company long years ago, that my Dad, Mom and I had worked for and I "knew" him, and some of his staff. In fact he has an office right here in my hometown.

So, I applied for a "Travel Grant" to go to Washington DC on March 24th, 2014. It was already probably kind of "past due" to even apply, but I did anyway. Tears of joy streamed down my face, when within a couple of weeks, I received notice I had been GRANTED A TRAVEL AWARD, for room, round trip flight, training, and such. I was almost shouting at my neighbors when I found out, telling everyone I could about getting the grant. My MOM was SO PROUD!!! SHE always SUPPORTED ME, AND BRAGGED ABOUT ME, to everyone! Mom was my "greatest fan", from my writing, to my advocacy work, to everything else I ever tried to do that was worth doing.

So, on March 24th, I flew to DC, and got to meet with Representative Joe Barton, tell my story, along with some other incredible people I met there. I cannot say enough about not only all of the Ambassadors, but the entire STAFF, are the most caring people. Laura Keivel was also such an inspiration to me from the AF, and she continues to be there for me at times,

On my last day of the Summit, I got a phone call (emergent) but at the time I did not hear my phone ringing. I was waiting to be picked up outside the Hotel, by my "Mother In Law" whom I had never met, (her son and I had been together over 10 years), plus we were going to stay, he was flying in, so we could spend time with her, and he could show me Washington DC!

Tragically, that phone call, came in about the same time my Mother in Law, walked into the Lobby to find me. It was from the Emergency Critical Care Unit in Dallas TX at Baylor Hospital, telling me my husband was in an extremely horrible car accident on the way to the airport in Dallas, to fly out to meet me! I dropped to the floor, and of course no one knew at that moment what was happening. But, a gentleman there that helped me get back to Dallas within about 6 to 8 hours, and I was at Baylor in ICU, my husband at the time, other than many other injuries, had a "broken back" and was headed for major surgery.

I shall end this piece here, but little did I know after March 26th, 2014, just how much more my life would change forevermore. Little did I know I would lose my Mom's sister, my Mom this past June, 2016 to a horrid Lewy Bodies Dementia, and that I became more ill, lost ALL OF MY TEETH TO SJOGREN'S, and the story just continues to go on. My husband went back to Seattle after mending a year here, for reasons, I feel mainly guilt, although it was NOT HIS FAULT! An 18-wheel tractor trailer literally ran over him,  and yes there is much more to that story also. Then my Pug, Tazzy, who was a Christmas Present in 2004 in Seattle, passed away within 24 hours of getting very ill. Thus "loss: had been a large portion of my life, loss of my own health, my own ways, my husband, my Dad in 2005, my Aunt and then my Uncle, and shortly thereafter my Mom.

So, I realize due to the nature of emotions tied into that fateful March 24th-March 26th, 2014, have been a mixture and blend of the good, the great, the bad, and just the plain horrid.

YET; although what happened in March 2014 WAS such a horror, being able to go to Congress, tell my story, and KNOW I HELP TO MAKE A DIFFERENCE, has been the "highlight" of my activism so far.....


(by the Way WEGO HEALTH, all of you are also an inspiration to me also) 

Monday, November 28, 2016

DAY #30! WEGO 30 DAY NOVEMBER 2016 HEALTH BLOG CHALLENGE!!! LAST DAY! REFLECTION, CONGRATULATIONS FOR 30 days of posts, & where do I feel I go from here?

 WEGO HEALTH NOVEMBER 30TH, LAST DAY OF CHALLENGE!!! What this 30 days has taught me, and how I intend on moving past, and take what I have learned "with me"....

I am still not completely through with ALL of my November 30 day Challenge Blog Posts. I got almost all, but still lack about 6 or so, before I can say I did all of them.

I do appreciate WEGO HEALTH and the "challenges" they give us as advocates, activists, and those who want to make things "better", to change the way Health care works for us, for others and for the world.

I hope to go from this past 30 days and take a hard look at myself. I DO definitely do "my part" when it comes to Advocacy, Activism, and being an Ambassador.... whichever you choose to define it, ALL mean you STEP UP to the plate,  take your very best swing, and hope to hit the "ball" right out of the park!

I know that MANY have made that possible with our Congress, with our States Governments, and even around the globe. Each day is a new light, new action when it comes to the way everyone views how "the health care" system should be.

WE have become #1 as, patients, BUT moreover as "activists"... able to give our story out, and know We DID make a difference.

*I've always been the type of person who likes "order".... things to be put away, no clutter, no mess, everything where it should be.. and up until the Lupus, RA, Sjogrens's and LIFE HIT me, I could do that,

A dear friend of mine, taught me a lesson, that was so very simple, YET it totally CHANGED the way I try and do things now.

I was in the car with my friend, and trying to get a lighter of mine to work. I had probably been to stubborn to stop and get another one, or would forget, so I was trying and trying and it just was "finished"... no more "flame" to come out of it... He asked me to "hand it to him"... so I did, and as soon as I handed it to him, it went flying by my face, out the car window (we were at a Stop Sign), and into a "field" by the roadway.

At 1st I was confused, then I wanted to laugh, and then it totally HIT ME! Not literally, but in a "life changing way". When something whether as "small" as a lighter, or as large as an "elephant in the room" is giving you problems, not working, and you are just getting more and more upset, frustrated, and plain down right MAD about it, "throw it out".... it is NOT WORTH trying to "fix" something, that is NOT fixable. Here I was stressing over a 99 cent light, when all I needed to do is pitch it out the window, stop and get a new one, or he happened to have had an extra one he gave me, and go on with life!!!

LIFE, as I have witnessed in the past 11 years, but MORE in the last 3 years or so, is TOO SHORT, to precious, TOO "there one day and gone the next" to allow yourself to be "worried" over "what is NOT working"...and go onto the next phase, where something IS working...

We can "Duct Tape" a sole on our favorite shoe, or "mend a hole in a sock. We can choose to drive ourselves nuts over something so silly as the news, a TV show, and all we need to do is "turn the channel"..

As humans, I know for myself, I've wasted too much of my life, "watching" the channel that I did not like, when all I had to do is change it.

Decisions, even where to go out to eat for me, are always "stressful".... everything in my life, I "question" up, down and sideways, I always "sleep on it" before I make a change, buy something, make a decision that ultimately could change my entire life, well what is left of it...

Yet, I've learned in the past year that "letting go"... of what I cannot do a thing about, and trying to "mend" what I can, or if it is TOO stressful, pitch it out the window, and drive away, Tomorrow is still will NOT work, but your mind WILL!

WEGO's Annual Blog for November Challenge did just that for me. I find myself "throwing out" what does not work, and moving on to the greater thing right in front of me. Making "right" what I can, and walking away from what I cannot do a thing about....

WEGO Health Blog 2016 November 29th Challenge - Have I checked out some others bloggers and #HAWMC Fellow bloggers -Choose a few I liked and repost to my Blog!

This is a very difficult choice to make because EVERYONE'S are GREAT! Information, giving of "self" in an unselfish way, bearing your own health burden's and life challenges for ALL to see - - - - - - - - -  



I am always so thrilled to participate and interact with ALL of the people there. ALL of you ROCK!!!

So, it is a "trying" time to make sure I give "back" to those who gave me so much, either through their own blog posts, or their comments about mine! I've learned a great deal about illnesses, about other bloggers, about how there are those that do CARE, and they "give of themselves" often "Bearing their Souls" about life, pain, chronic illnesses, being a caretaker, and the REST of what WEGO Health Helps to Teach us!

So, Here are a few of my re-posts:

Day #4 What Superpower would you like to have: Kristen's re-post form the FB Page :

Kristen WEGO - My superpower would be patience! Yes I count that as a superpower. Challenging yoga class this morning and a challenging first time working with clay this afternoon. Finding myself frustrated and pushing for perfection but remembering to have patience and to accept where I'm at 👌🏼My vase may be crap but at least I'm rockin my awesome Bipolar tee from @GabeHoward to help #Stompstigma

Day #1 on Julie Cerrone's  - FB Link -

 Her Blog Repost I liked is at:

Day #29 - "What I Wished I had known Before:

Day #4 by one her blog (re-post) Blog Name - Inflamed and Untamed!

Day #11 - Your Top Ten - From Blog "Journeying Beyond Breast Cancer" Re-Post

These are just a very few that touched me in one way or the other - I could name almost everyone I got to read, and will be reading over the next weeks, so I can really get to know so many of these great people and awesome Bloggers!!!!!! Rhia



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Sunday, November 27, 2016

Saturday WEGO Blog challenge - November 19th - How to Pull yourself out of a "rut" when things seem to just not fall in place? Health, skills, writing tools, life. being sick, other problems


I believe I've been pulling myself out of a rut so many years, I have to find MANY WAYS to try and continue to move on day to day, week to week, month to month... and hope the years continue to come also.

I used to gripe about birthdays, now that I've been so chronically ill, I am THANKFUL for them when they happen.

I have to admit, one of my "ways" I remain half "sane" is to talk to myself! I know that sounds more nuts than I will admit, BUT, I've found if I "talk" to myself, through a bad day, lousy situation, too many irons in the fire, I tend to be able to "move forward" past whatever is giving me too much hell at that time.

My advocacy work helps, and the blogging, and friends on Facebook (those that Truly LISTEN) that also gives me a way to purge whatever may be going on. There is ONE HUGE problem with purging online, especially Facebook! "Some" people that may not know why I write some of what I do, or they take is ALL LITERALLY, then I have "issues" to deal with. The true friends that know what is going on with my life, AND they know that my writing, is usually my #1 (first) to getting rid of whatever is eating me up inside.

I am the type of person, who can be totally upset, distraught, and appearing as if I am going to come apart a the seams, BUT once I can "say" it, whether Social Media, my blog, or talking to myself or my two fur-kids, it is gone. I don't harbor over problems that are in the past. Life is worth trying not to feel frustrated, upset and alone. As the years go on, I really have come to realize we are only here for a brief time, and allowing STUFF that we usually cannot do a thing about disrupt even an hour of a day, is an hour lost, that I can never get back.

So, I FUSS about it, throw it out with the bathwater, LOL, and for me it is usually over and done. You could ask me in a couple of hours what I was bummed about, and I probably will say honestly, I don't recall.

WEGO Health

Tuesday, November 22, 2016

Monday WEGO Health Blog Challenge for 21st of November - "Motivation Monday - A "Life slogan? What helps to make the experience so special?"

Monday, November 21,2016 WEGO BLOG CHALLENGE - "Motivation Monday" A Life Slogan that gets Me Through The days, that something are less than expected to be...

As I've always said in life, "IF you want the job done, and done well, you must dig your heels in, get your hands dirty, and stains on those "white jeans" and do that job yourself.

 My "mantra" has not changed all that much, other than the fact like this past 10 days, for 2 weeks I WAY OVERDID EVERYTHING!! Cutting down tree limbs, cleaning up my yard, re-potting plants, throwing out an old loveseat I had to literally take apart to get it out of my door, then dragging a heavy 10x 12 area rug out so I can replace it, re-arranging furniture, brought ALL of my very heavy houseplants in just before the cold got too bad for them, and I am talking about a palm 8 foot tall, my fern is about 12 foot around at least, my ginger plant is over 8 foot tall, and several more not quite as heavy but still burdensome to get into the house, after having to clean them all up, clean the pots, re-pot some, pulled one air conditioner unit out of one window, that I needed to throw away, and it was the small one. The large one is on the fritz and I have to get it out of that window, but I think my neighbor may have to help with that one...

I have TWO BROKEN WINDOW PANES, well I really have 4, these old glasses after 50 years are so brittle, but I am replacing them with plexiglass so for the most part I can do it myself, rather than have to be concerned about holding a piece of glass in place, while you try to place the push pins in, then get the glazing around it... so I am going to opt for plexiglass for now, and then worry about something else later... and I've baked some, and that is not including the running around errands, the regular house work, and my list goes on and on... thus I KNOW I did this to myself, with the assistance of Lupus.

I also know some things like hanging a ceiling fan now, and other things that require me to put my arms up and hold things up very long, I am going to have to get help with some of those, and the heavy stuff... after all of the lifting, pulling, pushing, etc... every joint, every bone, every muscle hurt, I even thought I had broken ribs it hurt so much to breathe... but ALL OF ME WAS SORE, EXTREMELY SORE, I had a horrid Lupus Migraine for days and days, the night sweats (cold ones), fever off and on.... my joints in my hands and thumbs are now so bad, my Rheumy will not believe how bad they got within 3 months or so...

But, even as my PA told me yesterday, she "understands".... she said I could "scold" you BUT, I DO THE SAME THING! I can't afford someone to cut tree limbs, and shrubs, or do lawn work, and lots of things that need to be done, she said there is just ME, and I have to do it come heck or high water... but THEN she said BEFORE MY CERVICAL SPINE IS WORSE THAT IT ALREADY IS, I'VE HURT IT TWICE AT LEAST WHEN MOM WAS SO SICK. Then I hurt my lower back here doing all of the stuff at home... to the point that NONE of my pain medications would touch it, BUT corticosteroids, are about the only thing that will get rid of this "type of pain"... it works on my other pain fine, but when it comes to "inflammatory" pain, all of the regular pain meds in the world will not get rid of it...

So, my "life's talk" to me is still the same, for the most part, "If I want it done correctly, and when I WANT IT DONE(like NOW) I must dig my heels in, hands dirty, clothes dirty, and "remember" to take it either slower, or try and get "some help" for some of this stuff that now is beyond my body's capabilities...

That is what gets me through my days, that and my two fur kids, even though sometimes they grate my last inkling of nerve I have... and knowing life goes I can get up and DO SOMETHING, OR I CAN SIT AROUND, HURT, MOAN, GROAN AND FEEL SORRY FOR MYSELF. (Which for me is NOT what I want, nor need to do.)