Happy Thanksgiving to You and Your Family and Friends - "Open Enrollment" falls during the holidays.... Decisions to make...

Global Healthy Living Foundation 

Here is a great URL and information for your Guide to Open Enrollment brought to you by the "Global Healthy Living Foundation".....

https://www.50statenetwork.org/patient-guide-health-insurance/?utm_source=50-State+Network&utm_campaign=6055d3a2da-EMAIL_CAMPAIGN_2016_11_22_COPY_01&utm_medium=email&utm_term=0_7a423dd451-6055d3a2da-232458653



Along with Wishing you all a Peaceful, Family and/or Friends, Laughing, Eating, Making New Memories, and Recalling the ones past... May you have safe travels if you are traveling about, may there be harmony around the nation & world, and may the Thankfulness in your Heart be filled and overflowing... Whether you are in a room full celebrating, or like myself, at home with my two "fur-babies" Bella and Peanut, having our own small "family" Thanksgiving, may you find the blessings wherever the days take you....


Be Safe, Take Care, and Find Something to Feel Proud for, Thankful For, and to feel Gratitude for during the holidays and reaching into the upcoming New Year....

Rhia

May The New Year of 2018, bring a renewed peace, better health, less stress, added hope, and a feeling of "life worth living" to all....

My hopes are that everyone had a wonderful Christmas holiday, and everyone got to where they needed to be both going and coming, without delays from weather, illness or anything else...
I also bid you a very Precious and Special 2018! My heart has hope, that we find Tranquility, A Faith to withstand and to triumph over evil and those who wish harm upon others. May there be a LIGHT that adds warmth to your soul, and may we all find the beauty in all things....

I realize that MANY of us had yet again, a "terrible" 2017, whether it be family, loss, health, jobs, finances, or "harm" from others, most of us will try and find that renewal of faith come midnight 2017/2018...

Wishing each and every one of you a SAFE, HAPPY, and GRAND New Year! My hopes and prayers are that WE as a person, as families, as friends, as workers, and as a state and nation find more hope, more peace, less stress, and a brand new outlook on our lives. 

I "try" to always find "hope" deep down inside this time of year. I am not "one" to have a "New Years Resolution" list, but a I usually have a "few things" down that I might like to "try" if I haven't done it before, "OR" change an old habit, find a new friend, or a new hobby, pray that my health gets no worse, and wish for peace most of all, in these times of trials, tribulations and suffering we see or hear about almost daily... May we be blessed with a New Outlook...

Wishing you much in blessings, hope, strength, better health, family, friends, jobs and so much more....

Wishing All A Happy, Safe, Love Filled, Thanksgiving!

I wish everyone a very Happy, (Safe) if you are driving, Cheerful and thanksgiving full of family, friends, and finding what things in your life you are
 

 

Grateful and Thankful for. Although like some of you, it will be myself, Bella Doxie and Peanut, my daughters family can't make it up this time, and my son is preparing to start a new job, training next week so I won't get to see them. But, I am "thankful" and blessed to have my two grown children, my Grandsons and Granddaughter, A wonderful Son-In-Law, and I am full of joy with my 2 "Little Devils but they are my Best Friends" the two fur-babies, and am Happy to be able to say HAPPY THANKSGIVING to ALL of my "ONLINE FRIENDS"... 

 

so there are things to be thankful for on this day.... I will be reflecting on the past memories of Thanksgiving with my Aunts and Uncles, and Grandparents, and all of the cousins... and how the holidays were so filled with cheer, food, and laughter.... love all around... and wish all a continued "Hope" surrounding you....

 

 

May you Find Blessings, Peace, Harmony, Love and a Wondrous Easter Day and in the Days Ahead....

 

May You Be Blessed with Hope and Love Today, Easter Day and in the Days Ahead....

Happy Easter to All! Mine started out insane, I didn't go to bed until late, just because I have been NOT sleeping for several reasons over the past 8 weeks or so. Either I have terrible night terrors, that wake me up, and I am crying, then I get "stopped up" and can't breathe, and by the time I get settled, then I am not sleepy... or I just wind up turning the TV back on, and then I can sleep at times. I keep waking up at 2am, 3am, 4am, until I am so sick of the hourly issue, that I give up, get coffee, and sit up watching something on Netflix until I feel okay enough to do things. 

Also, my pain level is off the charts for the most part. My neck is so bad, that i am in constant pain with either a horrid headache, or my neck so stiff I can't turn it, and then I get more tense, and my entire body hurts.., this humid weather is not helping... although not all that "hot" the humidity has just been off the charts this past several weeks. I get up and every morning even if it has not rained everything is so "wet" grass and all, it it is muggy, sticky and too wet to even take Peanut out until it dries out later in the afternoon... plus I've had so many "catch up doctor visits, then Echocardiogram last week, follow ups on my hip, which is really been sore, but between the weather stuff, my RA is in a severe flare, and so is my Lupus, so that contributes to the pain, and it just all continues to circle around and around, causing me to not sleep, and then by early afternoon, I am so exhausted, I've just been up way too many hours, but I don't want to try to go to sleep at 8 or 9 pm, then the same cycle starts over again.

 Also, I've had so many things as far as paper work, trying to decide if I even want to "stay" in my house. I've just about decided to sell it. Right now it is a "seller's market" and like my investment lady and I talked about last week, I could sell quick more than likely, and do it without even a Realtor, and save that money and hassle. I've just gotten to where between ALL of the outside stuff, mowing, fire ants, other ants, bugs, and so forth, the weeds are nuts, the wasps and such are already trying to build nests, and I am constantly fighting them so i don't get a nest like last year, where i don't "see it" and they sting me, because I don't find the nest... that is what happened last year... they built 
in my gate to my car port, and then I found a huge nest from last year close to my front porch a couple of weeks ago... i could not see it last year, so I was constantly having to watch to keep them from getting in the house... so I've knocked down the old nests, been spraying and knocking down new ones as they start them, but I have dead trees, the "weeds" in the back look more like "trees" than weeds... so trying to weed eat, mow, cut, chop, saw, and then the inside NEEDS so much work, I still don't have the floors finished in the bathroom, kitchen and now the kitchen and bath need to be either finished or repainted... the outside still needs painting and it is terrible... plus it needs a roof... 

I know that is coming soon.,.. and there is just so much to keep up with that costs a fortune, or is beginning to be things that my "body" does not like me doing... like sawing, and even using the light weed eater and although all is cordless and battery operated still with all of my joint issues, pain, and now the Lupus and RA getting worse, I pay a price for 3 or 4 days after i work on things.. then I suffer like today, I hurt from head to toe... I do know having hold of that pole saw really helped my arms... i actually have "muscles" built up from the weed eating, mowing, sawing, cleaning and so forth... rather than all droopy, although the skin still is some, I finally have built back up some muscles in my arms and legs..,. if someone would have told me just 10 or 12 years ago, I would not be able to do even little things, trying to use a can opener, button buttons, zippers, and all kinds of things using my wrists, hands and fingers, I would have thought they were nuts... not true... my hands, fingers, wrists, and elbows are always stiff, not able to be used to open anything, and trying to do just about anything with them, on some days is almost impossible. Even sitting here to type, hurts my hands, wrists, fingers, but my neck, shoulders, lower back, all of me takes a "beating" from even sitting for very long.., it sucks and I KNOW I AM NOT THE ONLY ONE, but I think after doing some thinking, and I found out i probably can do some investment stuff where I would have enough money from one or two of them to pay rent monthly for an apartment, and avoid all of the money I am pouring into this older home, that truly needs much much more work and funds, than I want to put into it.


I never thought I would feel that way, but after living in Seattle for 5 years, in an apartment where NONE of all of those things like upkeep, yard, problems, were anything i had to worry about, honestly I LOVED BEING FREE... I love having a yard, flowers, trees, but everything that goes along with them is getting to be more of a burden than "fun" like it used to be... I "hope" that between myself and my doctors nurse, who can be a jerk honestly, that we have my insurance company now where i DO NOT HAVE TO HAVE A CT ETC. before my neck surgery! They told her last week I needed an "MRI" before they would approve it, well i cannot HAVE AN MRI DUE TO MY PAIN PUMP, and a CT scan is a waste of time and money - I have TWO LETTERS, ONE FROM JUST LAST DECEMBER, just before I broke my hip stating the INSURANCE APPROVED MY NECK SURGERY.... I fell, and we had to postpone due to the hip fractures... but the neck of course is WORSE, AND NO CT SCAN, will show different... the X-rays in themselves show the damage and how much worse it is than just 6 months ago or so.... anyway, I am going to stay on the nurses butt this next week, so she will do her part. I DID MINE FRIDAY! I got all of the information from the insurance company, faxed her the letter, and what they told me on the phone, and if she will not drag her feet, we can probably get it set up and done the last week of the month. I decided to wait and did not go to the Casino today.., the weather here and up that way is "wishy washy" today and tomorrow... and besides, 

I've had so much to do here, before surgery, and I feel like I've been beaten, I decided to "change" the reservation until next Sunday,,, I hope to go then and if not then wait until I am over the surgery in 5 or 6 weeks then I can go to the Casino then. I did get my ham baked, I made those home made biscuits with the Sprite Zero that are so good, got some fresh fruit, I have sweet potatoes etc if I wanted to fix them, and I have a half a cake that I baked earlier this week, etc.,,, so I don't think I will do much other cooking, I did bake some very "healthy" oatmeal cookies this morning, without all of the fat, sugars, carbs and so on in them... I ground my own oat flour, used Splenda, and the Ranger cookies of course have Oatmeal and Corn flakes in them... so they don't even have any white flour, and I used "County Crock" and not any type of oil or "bad" butter sat fats etc... they turned out really good and are not too sweet, and don't have a bunch of empty calories and "processed mess" in them, I re-potted a few of my plants that needed it, and right now my arms, hands and entire body hurt like hell. I think I am headed to the sofa for awhile to rest... I HAVE TO HAVE A SHOWER in a bit, but did not want to take that until I am finished with all of the "chores" stuff around 1st.... Hope everyone has a very blessed Easter and in the days ahead my prayers are that we find hope, peace, and "good things"... the way our world is, right now honestly it is frightening.... but "worrying" won't fix it, so rather than worry, I am just doing my own stuff, and enjoying my days and moments as they come.... Happy Easter again to all..

Talking about our own Advocacy work, activism, the GOOD you TRULY DO, & What makes "us tick" - all of us differ one to the other... and Chronic Illnesses and pain can create and reek havoc on us, as well as age....

I have a "surprise" for everyone, but I wanted to wait until our newspaper publishes it here locally, then I will post it on Facebook, in my personal newspaper and on my blog. I have a "Press Release" from a project, that is really a vital program for research in many different realms of chronic illnesses and/or pain. I've participated two times so far, after they "found" me. 

The 1st time, I guess we did not do a news release, but they have this time. I was so thrilled about it, because I always have to sign a NDA (non-disclosure affidavit) each year they ask me to do my part. I want to share it, not just because if it being "me" but MORE to show ALL OF YOU, HOW YOUR INPUT, YOUR ADVOCACY, WHETHER ONLINE, emails, a blog, Facebook, Twitter, or however you may help out when it comes to activism DOES MAKE A DIFFERENCE! I've done advocacy and activist items now for about 5 years, for different organizations and in different realms. Some of them, really in depth, like getting to go to Congress in Washington DC with the Arthritis Foundation, or posting blog articles, or my Facebook things that I read, post, and try to help provide viable and possible solutions for so many of us, that truly need to be helped, whether through knowledge (which believe me KNOWLEDGE IS POWER, ESPECIALLY WHEN IT COMES TO YOUR OWN HEALTH, ILLNESSES, PHYSICIANS, SURGERIES, and all types of medical needs we step into during life.) I found out that although "some doctors do not like "educated" patients' MANY OF THEM are extremely happy to see patients taking an initiative to reach out, look for answers, make lists, ask questions, and not sit back and just rely on what our physicians tell us. 

LIFE and PATIENTS are too many and too busy, and our medical people NEED us to know all we can... so it saves lives, even our own. If you KNOW your medications, what you take, what you are allergic to, or have an idea about all of your medical issues, your surgeries and symptoms that are due to either a chronic medical illness such as RA or Lupus. Or if you are diabetic, you KNOW your own body, what you CAN eat, how to keep your blood sugar evened out, or other medications, know the side effects, understand when you NEED to call your doctor, OR when that side effect may not HURT you or even after a few days go away, rather than trying to call a doctor's office, and either stop the medication or go on taking it when something may not be right about it. I can almost go in when one of my joints, or my spine, or my muscles, or tendons (since MUSCLES CAN BE TIGHTENED BY EXERCISE) and TENDONS HAVE TO BE SURGICALLY REPAIRED OFTEN TIMES BECAUSE THEY DO NOT GET TIGHT AGAIN, LIKE A MUSCLE MIGHT...

That is why when you have a "torn rotator cuff" in a shoulder, you "may" strengthen the muscles, but if those "tendons" that make up the rotator cuff are too lax, or torn completely away from the bone itself, surgery may be the only option to get back mobility, strength, get rid of pain or much of it, and then strengthen the muscles after the tendons are repaired. You would be shocked and I know even ...

I recently began to totally "understand" the true difference between tendons and muscles. I "asked" the question, and my foot specialist explained it to me... like a rubber band may "stretch" like a muscle... but if it is attached to a board, and you actually tear it away from that board, no amount of exercise will give you back the loss from a tear. I now also realize WHY when someone TEARS TENDONS in their foot, or leg, it takes MONTHS AND MONTHS EVEN WITH SURGERY, to get that tendon "healed". It has to "attach" back to that bone. So, like my shoulders, or my left elbow the "severe tennis elbow" I had was "torn" away from the bone. My orthopedic surgeon attached the tendons back to my bones, with screws, nuts etc... BUT it took a long time for that tendon to actually "grow itself" back to the elbow, and often times, they don't attach back themselves, that is why, so often you never can do some of what you did with that shoulder, elbow, ankle, and so forth as you could at one time.

Before I broke the hip, I had just about made up my mind to try and snow ski one more time in my life. That used to be my "birthday present" the week of my birthday for many years.... but after the replaced knees, and the shoulder replacement, I felt maybe I should not chance "wrecking" one of them again. But, I had decided I would give it a try once more... and thought about making a trip to Santa Fe NM, I've skied there as well as Wolf Creek Pass that I LOVED! 

But Santa Fe has lots of new courses, and much more to offer than they once did, and it is about 7 hours closer than Pagosa Springs, CO where you stay to ski Wolf Creek. But, once the hip was fractured, I then knew there would be no way I would try to ski... not really because of the break of the hip BUT a fear now since my bones are so severely taken away with osteoporosis, my fear would be to "break" more bones, or another hip, or injure my back worse, thus my days of skiing are over with. I have great memories... and in fact yesterday when I was going through looking for the photo's with the fish, deer etc... I started to scan a pic of me, when the "big hair" craze was in... Gosh I wished I still looked that young.... ;) Alas time has become somewhat of an enemy when it comes to skin, aging, and how our lines, wrinkles and so forth seem to develop out of nowhere.....

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.

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

Day 4 - #HAWMC WEGO Health Writer's Blog Challenge - for the Month of November 2016

Day 4 - #HAWMC - A Letter to "Myself" at the time I was diagnosed knowing now what I did not know then....

 

 

Dear Rhia (self),


You had already "figured out" that something must be wrong with your immune system. You had been through enough doctors, tests, had so many symptoms resembling Lupus, RA, and several others like Sjogren's and Raynaud's that you really did not know much about.

When the 1st round of labs came back, from my own PCP (who diagnosed me at first), he knew that you needed to see a specialist. Although you come to find out your PCP has been more beneficial with the Lupus and Lupus Flares, that the Rheumatologist, who concentrates more on the RA than the other Autoimmune diseases.

You now can recall the first Rheumatologist, even though he was quite elderly, had just came back to work after a stroke himself, but his diagnosis, just after a thorough examination gave proof enough to show not only did I show signs of Lupus, RA, Raynaud's, Sjogren's, but had findings of probable MCTD, and that was almost more frightening than the Lupus and the others.

My moments that now I wished I had realized that ALL RHEUMY"S are NOT THE SAME, is something I wished I knew when I was first diagnosed. That caused me going through at least 7 specialists, each of which had a different "edge" and look on my diseases, or lack thereof. Most of them were only "blood work" driven. Not anything to do with all of the symptoms I had for years and years.

I could have saved myself a great deal of stress, worry, and getting nowhere, had I known to search for the "proper" Rheumatologist from the beginning. I've also come to find out my doctors here at my local Urgent Care know more about my conditions, than my Rheumy's for the most part. Plus if I am in a severe flare, there is no way I could get into my Rheumy in Dallas quickly. With those at Urgent Care I can be in and out, have the medications I need, and be hopefully on the road to curving the flare, without having to drive 40 miles each way, and maybe not getting what I need.


When I found out that I had 2 or 3 other 1st cousins, all on my Mom's side with RA, then we each began to piece together that this could very well be "genetic".

I wished I had known more about Sjogren's, for one. Maybe had one doctor done more about the Sjogrnen's I would not have lost ALL OF MY TEETH WITHIN A COUPLE OF MONTHS, requiring severe pain, and many dentists visits, to have all of them pulled that were left, and then try to deal with dentures, and the expense of over 15,000.00! Now I am still left with "pretty straight" teeth, BUT "fake" in nature.

So, I also wished I had more knowledge of how I could have been a volunteer and advocate before I myself had been diagnosed. I think had I been involved in some ways with the organizations who help us I may have felt "better" about myself, and not so ashamed of what these illnesses can do to us, our minds, bodies and souls... plus relationships, friendships, and the way people "see" us after we are ill.


#HAWMC

WEGO HEALTH

https://www.facebook.com/hashtag/hawmc?source=feed_text&story_id=10154656411124254 

 FACEBOOK URL FOR POSTS FOR THE BLOGGER'S CHALLENGE

 

 

Surviving - Being a Caretaker even after the person passes away, dealing and coping with loss & still "feeling" someone still having a hold on you from the "grave" - Decisions when you are chronically ill, in pain & trying to make everyone "happy"

I've been trying to "get over" what all has been left behind for me to deal with since June 9th, 2016 - Actually more like the start from about 9 or so years ago, when I came back to TX, to help my Mom.

Most of you that follow me, know I was an only child, my Dad passed away in 2005, and by December 2005, I moved back here from Seattle, to help my Mom. I've talked about due to Dad's upbringing in the "Depression" back in the 20's and 30's Dad's "way" of handling life was much different than those who were younger. Not that he had "bad ideas" but there were many things he could never accept, that were just a part of life, as it evolved and changed.

We each know life does not remain standing still. Each day, there is something new, whether it be something horrible like the "wars" overseas, and innocent lives, even children suffering for no reason but greed from others who want to "rule" over people,

There are also many good things that almost change daily, from cell phones, to technology, jobs, the way our country is ran, and all types of good things that can change within a breath's space.

My life, as well as many of yours have changed, evolved, grown, fallen, gotten up, and tried to march on, even through the pain and suffering, the embarrassmentand the good, bad and indifferent of this world.

Speaking of, our nation and world are in such a torment, chaos and it's hard to fathom other humans can do some of the things they do to those like them, humans. Each day the news seems to worsen over not just all of the overseas fighting, hatred, war, and such, but right here in our nation, each evening, I watch almost in horror of what act of violence has happened that day.

I was left to "take care of" all of Mom's affairs, of course Executrix of her Will/Estate, as you can call it.

Mom had made some really "bad" choices when she was alive. She did some things that as much as I had tried to help, explain, and give her insight along with her financial advisor at the time, to get her to understand, some of what she was trying to choose, could cause family issues someday after she was no longer here.

I never "told" her what to do or not do, but helped her, by explaining why I felt one way or the other, as well as her advisor also helped to guide her into not causing family grief, anymore than we would already have after she had passed away.

I had been here over 10 years, and for most of that time, I helped her with just about  everything, from bills, to putting gas in her car, to helping her and doing her taxes, explaining things she did not understand, you name it, I did it... I am an only child, and I felt it was my responsibility to help her in ALL ways, that I possibly could. I can hope that I did for the most part a decent job at it.

Although a couple of things fell through the cracks, and as I said years ago, NOW, we have a family "uproar".... that although one member "seems" to not be hurt by what has taken place I feel badly that it has, and even more upset that the other 3rd party is NOT helping, and is acting like a damned toddler, rather than a grown up adult.


I am going to go ahead and publish this although it is not finished... I will finish it and post the rest very soon...

Happy Labor Day - Journey's and How Our Lives Change Within Moments - Coping with Grief, Chronic Pain, Lupus, RA, Sjogren's and taking one step at a time....

I’ve felt so many different emotion since June 9th, when my Mom passed away. As I told my daughter Amanda on Friday evening over the phone, I think the entire ordeal is just now beginning to set in as reality. I catch myself wanting to call Mom to tell her something or ask her something… often times a week. Then it dawns on me, I cannot do that via telephone anymore…. I’ve put off really doing ANYTHING for just myself. I’ve been so busy taking take of all that needs to be done, from paperwork, to painting and working on the house there, that I have NOT had anything I really wanted, needed - other than the weather get nice enough and for me to be well enough to feel like going to Winstar in OK for a night. As soon as I can find a Sunday and Monday, here, there and between there is going to be nice weather I plan on going and it will be a “delayed celebration” of what would have been Mom’s 81st birthday on August 28th.

 But, it came to me a week ago, if I don’t find some other way to sit at my computer to “write” I will never get it done. Right now due to my neck needing surgery, and possibly my lower back, I cannot sit here for very long at a time…. plus when I have the surgeries, I won’t be able to sit like this, due to the neck brace for 6 weeks and so on….


SO, I decided I CAN sit on the sofa, with my legs up, where my ankle also does not swell so badly, and THERE in the evening after dinner when these two hellions (Bub’s and Peanut” calm down - one on each side of me, would be a perfect time for me to get some writing done, more on my blog, be able to get possibly back into my advocacy work, but MAINLY WRITE! I desperately NEED to finish my 3rd book, and after what happened to Mom from this past January till June 9th, NOW I totally understand “why” my writing was “delayed”…. it is clear as day, that I MUST include all of what Mom went through along with myself, as a caretaker that needs a caretaker…. and so much that no one even knows happened…the details of each and every day being there with her those six months, even sometimes changing from hour to hour…. I witnessed such an unbelievable change in her emotionally, physically and mentally… and that is why my writing was put on hold…. I have much more to add to that journey, for myself, for her and for my kids… and Grandchildren later and those to come… SO I broke down and ordered an Apply Air Laptop. I didn’t get the “biggest” or most expensive, because some of it I probably may never use. But, the screen is large enough, and I already love the way the keyboard is laid out and back lit….

I just received it late yesterday via Fed Ex, so I really have not had much time to “learn” about it…. I felt much “guilt” and hesitated at first before I bought it, BUT, I recall what my Mom said to me, several times, but moreover just before she began to really show the signs of getting so bad, so quickly, she made me “promise” I WOULD complete this 3rd book, and have it published. MOM was and will always be my “Greatest Fan”…. So, I want to fulfill that promise to myself and to her…

thus then I knew the laptop made perfect sense…besides, as much as I LOVE MY PRIUS! And planned on leasing another the first part of 2017, if I forgo that, and drive Mom’s Elantra, which only has 10,000 miles on it, and just needs a battery and tires (from lack of her driving it much) then I could do away with a lease payment and higher insurance… I have not made that decision yet, because that Prius was the BEST thing I’ve ever had in my life, as far as “items”…. but I have time to decide… so by then things will be more centered, and I will be able to make that decision. So, here are a couple of photo’s of my Brand New Apple Air Laptop!

HAPPY LABOR DAY!

Why Do We Celebrate Labor Day and How It Began! 

For a lot of people, Labor Day means two things: a day off and the end of summer. But why is it called Labor Day? Labor Day is a day set aside to pay tribute to working men and women. It has been celebrated as a national holiday in the United States and Canada since 1894.

­­
Labor unions themselves celebrated the first labor days in the United States, although there's some speculation as to exactly who came up with the idea. Most historians credit Peter McGuire, general secretary of the Brotherhood of Carpenters and Joiners and a cofounder of the American Federation of Labor, with the original idea of a day for workers to show their solidarity. Others credit Matthew Maguire, later the secretary of Local 344 of the International Association of Machinists in Paterson, N.J.

The first Labor Day parade occurred Sept. 5, 1882, in New York City. The workers' unions chose the first Monday in September because it was halfway between Independence Day and Thanksgiving. The idea spread across the country, and some states designated Labor Day as a holiday before the federal holiday was created.
President Grover Cleveland signed a law designating the first Monday in September as Labor Day nationwide. This is interesting because Cleveland was not a labor union supporter. In fact, he was trying to repair some political damage that he suffered earlier that year when he sent federal troops to put down a strike by the American Railway Union at the Pullman Co. in Chicago, IL. That action resulted in the deaths of 34 workers.


In European countries, China and other parts of the world, May Day, the first day in May, is a holiday to celebrate workers and labor unions. Before it became an international workers holiday, May Day was a celebration of spring and the promise of summer. Membership in labor unions in the United States reached an all-time high in the 1950s when about 40 percent of the work force belonged to unions. Today, union membership is about 14 percent of the working population. Labor Day now carries less significance as a celebration of working people and more as the end of summer. Schools, government offices and businesses are closed on Labor Day so people can get in one last trip to the beach or have one last cookout before the weather starts to turn colder.

 Links Below for More Information On the History of Labor Day

• U.S. Department of Labor: The History of Labor Day
•  (from the Dept of Labor Website)
•  
•  
• An Eclectic List of Events in U.S. Labor History

 

 

 

CANCER "MOONSHOOT" Stop this horrid illnes in i's tracks for good!

WE HAVE the ability, the equipment, the knowledge, education and brilliance out there to CURE or STOP cancer in it's tracks ! FUNDING and others like me that SHARE in social media YOU DO MAKE A DIFFERENCE!

#CanServe #MoonshotSummit http://curec.lk/295ywFm

Dementia, Alzheimer's, "A Quilt to Remember", getting back to somewhat of a normal, life, Advocacy work, & making a "Quilt Block" in Memory of my Mom & both Grandparents

Alzheimer's, Dementia, Quilt to Remember,Mom, my Grandparents, and for our generations to follow


YES! IT is 4:30AM and I am UP!

 I have not been able to sleep again in a couple of days. I am not sure if it is just being "down" during the day with my ankle, or feeling a bit "edgy" that I am NOT up and doing some of the things I need to be doing. Both pups have also been restless, especially tonight. In fact the little one my Peanut Holy Terrier, :) was a bit sick to his tummy. But, that pup will EAT ANYTHING! I have to constantly keep a watch on him...because if he can get his paws on it, it's going in his mouth, and more than likely he will eat it. I hope it is a "puppy thing" for I know my Tazzy did that when she was little. But after she turned about a year old, she got out of that picking it any and everything in her mouth. Plus he CHEWS on everything! My other two did, some, also when they were in their first 6 to 9 months, but after that, they began to ONLY CHEW on what they were supposed to. I hope Peanut does the same. But he is definitely, "a pup of a different color" for sure...LOL! Stubborn as a Mule, yet he is coming out of that a little now. He also thinks my hands are "chew toys"...so we have really been working on NOT "chewing, nipping" at Mom's hands and on Bub's ears... They seem to get along good, but there are times since Bub's is older, he gets enough, so he puts Peanut "in his place"... he never hurts him, he just gives him this "look", and Peanut KNOWS to BACK OFF playing for now... :)

They both like me to sign to them, and I did finally get Peanut a "song" I made up, plus he already is getting a couple of nicknames, I catch myself calling him "Pea-knuckle" (spelling like the game Pinochle" - or LOL something I bit "off" color, since he was neutered, I call him "Peanut-less" at times.... LMAO! Well, believe me ALL of them have had several names and always learned that by either that name, OR my TONE or BOTH, either things were good, or they had done something "not so good".... just like kids, these fur-babies, seem although at times to continue to be fur-toddler's most of their lives... They have really been "trooper" though.

Through all of this with my Mom, I had to be in and out so much here at the house with them, and that was something they have not been used to, I know there were days they both could not wait for me to "cling" the keys and open the doors and both standing, jumping, barking, and crying for joy that "Mom is finally HOME"! So, it has been a difficult time for them, a totally weird schedule, and not our "normal routine", although I tried to give us "our time" each evening together... and then I know they have sensed me being upset, in a turmoil, and also both of them especially Bub's knows when I am not well myself, and it is almost like he "watches" over me, sitting beside me, and even at times he will be there, and he will just let out this kind of almost a "cry" wanting me to "sit down" with them, and be still for a little while. So, having me "home" the last couple of days to themselves more or less, and spending time down with my ankles, they have been in heaven right beside me.


Okay... now to another reason for this POST, I want to do a "quilt piece" for the "Quilt to Remember" tour that is going around the nation in honor of those who have had these horrid diseases of Dementia, and have taken away their minds, in so many different ways, time frames, and so forth. I had been an advocate already in many ways for the Alzheimer's Association but I had forgotten about the quilt. So, when I wan in getting information on where to donate in honor of a loved one etc, or in memory of someone, I saw that website about the quilt.

Since both of my maternal Grandparents had some form of Alzheimer's and Dementia, and now my Mom, I want to do a quilt piece to go with this quilt around the country. I've submitted my "story" and asked for instructions about the quilt block, which for an individual is 4 feet by 4 feet.

Since my Grandmother made MANY quilts completely BY HAND, not one machine stitch in them, and I have also been able to do a quilt, and have actually a oversized, probably King sized almost top finished for a quilt, I decided what better way to "give back" and also hope to help to find the reasons for these horrid, mind taking diseases, and give hope that we find reasons, find more help, have more research, find a cure, or find out what we can do to completely STOP some of these types of dementia's. I am enclosing the "link" here for this project. I have several ideas already and really already have materials etc, (some I found over at Mom's, and I think it is still good enough to use in the quilt) and am waiting to hear back on details about the quilt block and getting it to them -

http://www.alzquilt.org/

Here are a few example of blocks made by people for the "Quilt to Remember"

Created by Colleen Anderson,
Fargo, ND,
in honor of her mother, Patricia Kelso

 Created by Phyllis Bednarek,
Woodridge, IL,
in memory of her mother, Mary Estelle Ruppert 

 

Created by Bernadette Discon,
Jackson, NJ,
in memory of her husband, James Russell Discon

Created by Kimberly Fondaw,
Grand Rivers, KY,
in memory of her mother, Geraldine M. Brown 

ALL of these are from the website about the quilt! Plus there are many, many more that give me some wonderful ideas for doing one in memory of my Mom. 

Moving Forward.... thru the realms of Life, where it takes us, chronic pain, family, and all of the things we "learn" along the way..... Alzheimer's

They did not give Morphine due to Mom being allergic to Codeine, but Dilaudid instead and since I know more about that medication, I am glad they chose it. They also gave me "Ativan" that I can give her, and then a combination of meds in a "cream" that goes at the pulse points for nausea, agitation, and to assist in breathing... so far, Mom has been able to swallow just fine, but they gave me the Atropine because it may get to where she does have problems swallowing, and that is what is another part of the "comfort medications". I am able to give her the Norco just as before, she now has really stopped eating all together, which as they said was "normal"... and she still gets a dry mouth of course the medications themselves can do that, so she will drink of all things it is so funny, Mom never drank any type of "Cola's", or carbonated drinks... but when this first began, she wanted nothing but Diet Dr. Pepper, Sprite Zero, and sometimes Diet Pepsi.... 

so if she does tell me she wants a drink it is usually the Sprite Zero, with some water in it, so it is not so "strong" with the carbonation. I changed her a couple of hours ago, and got her all on clean and dry sheets, and a dry night shirt, and her diapers on, then they gave me some cream I put on the heels where the blisters were... actually the nurse told me unless they are "weeping", to allow them to "dry"... rather than put anything on them... so really the one heel is the only one needing much care... 

most of the other places where her skin is so thin, and like me, she has very huge places that appear almost like "blood blisters" but flat, and not blisters, just more broken blood vessels... and the Lupus causes me to have those... I told her that I had to look at those "new" types of diapers, because it has been so long since I used diapers on my 2 kids I was out of practice... LOL... and I told her that I wished we were at the Casino, and that everyone here online, and around town that knows tells me to say hello and tell her they are praying for her... but I try my best NOT to disturb her... 

I realize she "hurts" all over... and just even trying to roll her gently from one side to the other to change a sheet, diaper etc.. just plain hurts... so I give her the pain drops, and meds, and then I try to clean her good, but not put her through any more misery of being tossed and turned in the bed... and today she said "ouch" a few times, but I would tell her it was me, and that I was trying to do a "better job" that the aide as far as not making her hurt worse... and by the time I had her dry, cleaned up and gave her meds, she was asleep and peaceful again.... I don't know whether I should be "posting" this stuff or not, BUT it "helps" me honestly... have some way to "say" the feelings and emotions.... and then I am not so "frazzled" - thus the posts help.... my back is so messed up, I could sit in my floor, scream, cry, and gripe due to the intense burning in my hips and down both legs.... 

I may have to go to my pain doctor if I can next week and have him "up" my pain pump meds until I can get into surgery.... but we shall see.... As I said in another post, I continue to "learn" a great deal from those from Hospice, and I have a high and new found respect for the people that I have been in contact with so far.... they are definitely Angels... what a difficult "job"... that has to be.... Anyway, back to the sofa for me... I have to try and get my back to calm down a bit... I did not sleep well at all last night, and had severe nightmares all night long... so I am drained......

FINALLY, A Beautiful Day, more Wondrous than I have had in literally months and months!! Family, time away as a caretaker, as a patient, & feeling somewhat "normal" for at least a day or two.....

FINALLY WHAT IS AND HAS BEEN AN INCREDIBLE DAY IN SPITE OF LUPUS, RA, SJOGREN'S, DEMENTIA, AND ALL OF THE OTHER HORRID DISEASES AND CHRONIC PAIN!


This has been and is one of the BEST DAYS and BEST WEEKENDS that I've had in a very, very LONG TIME! It is so awesome to have my daughter Amanda  and her hubby Jimbo, as well as my son Jason all together in the same space, and be able to have a wonderful lunch (I ate way too much) and just enjoy one being together.... I surely so NEEDED this, and I know for them it is truly important to them also. Plus, although yesterday was a "rocky" start with Mom, I will explain more later, she did finally EAT, yesterday afternoon, and a bit more than usual. :)) 


She has not eaten in days again, other than drinking the Ensure, so seeing her actually eat and enjoy the food, although a very small amount, it was a blessing. Plus, we know she really does not for the most part know who any of us are, even me, I think she did have some lucid moments over the past day or so, and did understand the three of us were there today and were visiting her. 

The road to getting help is my next feat, I HAVE TO GET HOSPICE in there! I had to turn her mattress completely over due to now we are having "accidents" in the bed, that I did not know about, until yesterday... so I bought some of the "Depends" or as Jim and I used to call them "OOps I crapped my pants" underwear... LOL... right now she sometimes just I think does not realize she needs to get up to pee... that is our issue at the present.... so after buying new covers, pads, waterproof for the mattress, and all plus I put some under pads beneath her, so that way, we don't have her laying in urine, and causing sores... we don't need bed sores for sure.... but again, I am so proud of both my son and daughter, and I hope they know just how much I love them, and every day wished that we could be "closer" as far as our distance away in miles from one another... but sometimes life does not "give us" what WE think WE need, it deals out what for one reason or the other WE NEED, and don't know why.... and I also thank my friends for all of their love and support! Rhia

 LOL!!! For some very Odd reason this just seemed like the photo to publish!

A Letter to children (mine included) if something happens such as Alzheimer's or Dementia to me....

Here is a wonderful but hard to think about article with a "letter" to their Children from someone who thinks about Alzheimer's and what they want to share with their children....

https://chermor2.wordpress.com/2013/08/21/what-ill-say-to-my-children-if-im-diagnosed-with-alzheimers/

And after witnessing what this horrid disease did to my Granny, my Papa and some with my Dad, and now what it is doing to my Mom at such a rpaid rate... a woman that just 7 months ago was just waiting for my two abscesses to get well enough so we could go to Winstar for a night, that now cannot turn her washer, dryer, microwave, TV, or just about anything "on" or use it... has no clue how to "drive" her car, & cannot recall how to take her medications, but also I have watched her go down in physical appearance, she is shriveling up to nothing, she barely eats, but will right now drink the Ensure's and drink Diet Drinks, and she NEVER used to like any type of soda that much, she has not put on "street" clothes in months, she "cut up" her card to the Casino, lost her SS card, her Medicare card, 3 credit cards within 2 weeks, can't pay a bill, or make out a check, has no clue what any of her bills mean, and even though I have just about all of them on auto pay, two of them I am going to have to put on just emailing them to me, she was almost late on one this past week. I did not know she got it in the mail, and finally she happened to show it to me, many days she is almost bedridden, thank goodness yesterday was BETTER, for a change... she was up and out of the bed yesterday, and was "more alert' and understood more, although again, I had to start her washer, then put the clothes in the dryer.... she thought her money was "running low" and I told her Mom, you are NOT spending any money, other than your regular bills, so nothing is wrong with your finances... she cannot recall the day, month, or day of the week most of the time...

 I have never seen her home as in a disarray as it is now... and even her, she no longer barely cares for herself in appearance, and I feel does not care to.... anyway that is just a few things that Lisa Lisman Walker, you totally understand and more, and you helped me so much... I am now more aware of why or why not on some of the things she is doing... plus Mom is also in chronic pain too... I feel it is her lower lumbar spine, plus arthritis in other places also... she had it already in her hands and so forth, but with her back, and she has some stenosis, some discs that are not good, and bone spurs etc... but the only thing they can do is give her medication... they did one round of injections, but unless she gets a bit better mentally, I do not think she would even think about going back for those... and she cannot take NSAIDS due to kidney functions... so she will be on medications the rest of her life... and if she does not take them as she should, then it puts her in bed worse due to the pain.... 

SO, THE MESSAGE HERE IS... this "letter" is also to my two children Amanda Batson- Matheny and Jason Harber - I will write you both to tell you many of the things this woman says in hers... IF I EVER GET THIS HORRID DISEASE... just put me in a special "home" for these types of patients, especially when I am getting this bad... because I NEVER would want either of you to have to deal with me in this capacity... I am trying my best to keep Mom at her home, and feel it is "too late" to try and "build on" to put her here with me... plus I feel she would not be happy, if we did... if I can keep her in her home as long as possible, with the help of Home Health Care, Meals on Wheels, and myself, then I shall do that... but I want you both to be able to always LIVE YOUR LIVES...Mandi, with your family, and Jason, you also... you have a life ahead of you, and you may too have a wife, and someday kids if you chose that route, and I do not want either of you to have to deal with what I see and hear daily. I want you both to remember that I love you both too the "moon and back" twice, and that if it came to me being like this, I still love you and I would understand if you could not yourselves take care of me... do how I am doing Granny, and let me stay with my own home and puppies, as long as I can... and if with help from Home Health care, and so forth, I still cannot be "alone" then I want you to put me where I can be cared for, but not have to be a "burden" in your lives.... I love you both and miss us not being close, "physically" as to where we live, but that does not change the fact that I love the both of you more than life itself.... Mom Rhia Steele "All things Autoimmune"

DOES IT EVER END????

Now as if things are not screwed up enough!!!! MOM TOOK ALL HE MEDICATION MORNING MEDICATIONS THAT WERE SUPPOSED TO BE THROUGH FRIDAY! all of them already! THEN ONLY TOOK "PARTS" OF THE BEDTIME MEDS... WHEN I asked her why she just looked at me and said well it is so simple I really do not know why I can't "get it"????? Then she DID NOT TELL ME that her legs and ankles were VERY SWOLLEN... now this is since Sunday - well she did NOT take her LASIX all week last week, because she did not take ANY meds last week... and SHE said Well they were "worse" they are better now... BULL, SHE is playing with "fire"... the entire reason for being SO CAREFUL about swelling is TOO much FLUID can cause that "heart valve" to act up and then she is facing open HEART SURGERY!!! So, I MADE HER TAKE ANOTHER LASIX and watched her and then increased it over the next 5 days to 2 every other day, which is what her heart doctor wanted her to do in the 1st place!!!!! 

Then "THEY ARE BACK!!!!!!!!!!!" I was in the back yard a few days ago, and in the back forty lot over some of the "weeds" I saw lots of what I thought were those damned "May Flies" which I hate swarming... BUT NO, THANK goodness I went back today and looked, because earlier I was out there with the weed eater trying to knock down some of the tall weeks before the city freaks and wants me to pay to have someone come and mow it with a tractor... 

BUT I stopped and decided I had enough room to spray weed killer as usual and should knock it down enough, it is all weeds and no grass... BUT, I LOOKED BACK AT THAT OLD BUS again a bit later AND IT'S THOSE DAMNED HONEY BEES!!!! WE "RAN" THEM OFF WE THOUGHT' They built in the neighbors walls... and he almost never got rid of them and NOW THEY BUILT OR ARE BUILDING BACK IN THE DAMNED OLD PIECE OF BUS ON MY BACK FORTY!!! I have been wanting to get someone to haul it and a bunch of old dead trees and tree limbs out, but finding the money is not easy... SO CRAP I have to do something... I just hope I can find someone who will come and "move that damned hive".... what a mess... 

Bub's is better, and I still never "found" what bit or stung him, and he is still not all the way over it, but all of it is looking much better, and I can tell he feels much better... what a damned nightmare... I do not honestly know what to do about Mom... and then I find out something about my car lease that I am really pissed about, but I will "save" that story until I do some research..... anyway, things suck even worse, and I am worn out.... and sick and tired of it all..... does it ever end!!!????