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)...so 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

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

MONDAY STARTS THE KICKOFF OF WEGO HEALTH AWARDS CEREMONY! BE SURE TO GET INVOLVED, SUPPORT YOUR NOMINEES & ENJOY! #HAA Awards

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!

CELEBRATE THE PATIENT VOICE! 

 

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

 

http://blog.wegohealth.com/2016/11/23/haawards-celebration-schedule-of-events/

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!

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)

#HAWMC

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.....

#HAWMC

 - #HAWMC on Twitter

 

 

 

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

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"....

#HAWMC

 Twitter #HAWMC and WEGO Health

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....