Showing posts with label Sjogren's. Show all posts
Showing posts with label Sjogren's. Show all posts

Tuesday, November 27, 2018

After All of the "Buying" Now is the Day to "Give" - #GivingTuesday!

Giving Tuesday! Now that we have given Thanks for our loved ones, friends, and had our meals, shopping for days, and all of the "buying" - TODAY is the DAY TO GIVE -  #GIVINGTUESDAY  

Pick One of your Charities or reasons, or places to give to and give in order that we may help to either cure illnesses, bring change to stop illnesses, to raise awareness, to feed the hungry, or whatever you may feel needs to be done or changed... Raise your Hands and Help to Giving Tuesday!






Friday, March 16, 2018

AUTOIMMUNE ILLNESSES, & CAN YOU have "Botox", "Restalyne" Or some of the other injections for lines around the "Mouth and Lips?"

QUESTION? ANY OF YOU WITH AUTOIMMUNE ILLNESSES, HAVE YOU EVER WENT AND HAD ANY TYPE OF FACE/LINE PROBLEMS DONE? LIKE GETTING A BOTOX INJECTION, OR SOME OF THE NEWER ITEMS THAT ARE DONE BY INJECTIONS? I KNEW ONCE I GOT MY DENTURES (DAMNED SJOGREN'S TAKING ALL OF MY TEETH) THAT I WOULD HAVE MORE OF A LINE ON EACH SIDE OF MY FACE AND ON THE TOP OF MY LIP... 


BUT OF COURSE WITH AGE THEY ARE GOING TO BE THERE AND GET WORSE. SO, I HAVE READ BOTH "OKAY" AND "NOT OKAY" TO HAVE THESE TYPES OF PROCEDURES DONE IF YOU HAVE LUPUS ETC??? ANYONE HAD ANY EXPERIENCE, AND IF YOU DON'T WANT TO SAY ON MY MAIN PAGE JUST SEND ME A MESSAGE ON THE MESSENGER. I AM REALLY, REALLY BUMMED ABOUT HOW THEY ARE WITH THE DENTURE SITUATION, WHICH I HATE THEM ANYWAY, THAT IS ANOTHER ENTIRE STORY! BUT, I WOULD LOVE TO KNOW MORE FROM SOMEONE WHO HAS EITHER TRIED TO HAVE IT DONE, OR HAD IT DONE ETC!!!!! THANKS! RHIA


ONE ARTICLE:   https://www.skintour.com/q-and-a/autoimmune-diseases-and-fillers-are-they-safe-can-food-help/

Sunday, August 6, 2017

The Memories of Life BEFORE Chronic Pain & Illnesse"S", thoughts of simpler times, knowing one should NEVER be "complacent" & not share your feelings, all too often "we" lose out

In The World We Now Live In, All Too Often Many Of Us Remember Times that were Simpler, Many of Us Without Chronic Pain and Suffering, not Fighting to Get Into See Physicians, or Fighting to Get Insurance Companies to Pay the Bills. We also Were Not "Surrounded by A Sea of Specialists" Parents and Kids Never had to Be Concerned Over "kids Abusing Drugs", we could Leave Our Windows Open, Our Doors Unlocked, Those Time When a "Mean World" did not exist. You Could Walk down The Street, You could Drive down The Highway, Kids could Play in Their Yards, We were not a Country, And World filled with Violence, Hatred, Bigotry, None a few years ago would have been a "Suicide Bombers" or 'Home Grown" Terrorists; in fact any type" of Terrorists

 

 

Time were filled with good memories, vacations with families, getting together with the Neighbors, Having a "treat" of a Hamburger and Fries on Paydays. Deer Hunting, Fishing, and Our Minds Filled with The Promise of a Brighter Future... now WE LONG for those times that gas was .50 a gallon, and $10.00 would buy enough groceries for a month. We have such gratefulness and I know for myself, a "Longing" to live in "that World" again...

 

I had been "going over" all kinds of memories, good times. lousy times, and all of the "quickness" of how time goes by. My daughter and I were talking on the phone yesterday. She had taken the boys to get school shoes and clothes. She was saying that of course Logan, the youngest, still has a "school supply" list, yet James, who it just dawned on me, my oldest Grandson is going into JR. HIGH SCHOOL this year. So, of course they wait for many of the supplies because the teachers will want different things. That got me to thinking and remembering what seems like just yesterday, that Amanda and Jimbo brought James up from Corpus, he was only about 6 WEEKS old, born on December 6th, 2005. I had really just moved back to Texas, after being in Seattle for almost 5 years, and only had been back myself for about 2 weeks or so.

 

I got to looking at all of the photo's over the years, how little James was, then Logan, who is almost 5 years younger than James, is also getting much older, growing like a weed, and is now I believe 7 and going into the 2nd grade! Heather my Granddaughter, who was only 2 years old when Amanda and Jimbo began seeing one another, is now been out of high school over a year, and is starting on her 2nd year in college, working, and getting ready to go to nursing school probably next spring. As I thought about my years, my hopes, dreams, possibilities, the things I accomplished, things I wished I had accomplished, and that "list of deals, times, events, and yet dreams" of what we "hope" we get to do, before we are "no longer here" on this "plain" and have stepped into another realm. I've been blessed with the incredible children, grown, never was into loads of trouble, drugs, causing problems, both have the high school diploma's and have some college, certificates and so forth. I had a son in law that is that is the most caring, nurturing, loving, comforting, care taking husband, son and Father I believe I've ever known.

 

 My daughter and him met when she was about 15 years old, and as of today, and what will probably be the rest of their lives, that have a stable, happy, loving home, with three incredible kids, and they are blessed, and I am blessed and a better person for my daughter, son and son in law. When I think about how much I "missed out on" from my personal ideology that I so wanted to accomplish, I began pondering that first of all, when I was in school, and for the most part when my kids were in school, there was NOT a great deal of "meanness" of drugs, of those who choose to terrify other kids... life honestly was much simpler, especially when i was in high school. Yet, the very things I felt I would either "do" etc in my own personal life, much I never accomplished. I wanted to be a nurse, and in the medical profession, from the time I was about 13. I began my "writing" at 14, and felt I would be compelled to be a very accomplished author in the time to come. I wanted to travel much more, even overseas to many of the European countries, yet I've only been out of "the states" once, and that was to Mexico. I never even got the chance to go up to British Columbia when I was in Seattle.

 

It happened that I went shortly after 9/11, and things at the borders had really changed. In fact, I never owned a passport. I've seen many of our states, had many vacation from those with my parents, to those that I took my kids on, to those I've been with someone else, and then even by myself, to Austin TX, to Lancaster CA, to Phoenix AZ, been snow skiing, and have had many great experiences, even though I also "missed out" on many, that for one reason or the other, life turned me a new direction, thus I did something else, other than what I "thought I would".... at 57 years old, and suffering from several chronic and severe illnesses and pain, it makes it more difficult that when I was younger and in better health to jump up and spend a weekend in San Antonio, or go to Dallas dancing, or just for a night out on the town...

 

 I still have "some of those dreams" on a list, I don't really like the term "bucket list"... for some reason that just does not sound correct to me... but I have come to see that life is a challenge and LIFE FLIES BY TOO QUICKLY, you blink and you are in college, and you blink again, and you are over 50... pondering over where the time went, and why you did or didn't do some of the things you did. I've had many people over the years ask me how I "withstand" the illnesses and pain... 

 

well "faith" and "hope" along with what little bit of family I have, along with my "fur babies" keep me trudging forward even when i feel like throwing in the towel. So, tell everyone you love, that you love them, every chance you get, never take one moment for "granted" for the next one may not be there, never pass up an opportunity, if you can, to do something you have always wanted to do, be kind to those around you, be courteous to the elderly, those who are suffering, and even if you don't "give financially" giving FROM THE HEART, and with NO expectations, other than it made you feel good to do something... for coming from the heart and soul, is truly blessing someone else. I sit here today, alone, well Peanut is here, but no other "human" - and I do get lonely, I do at times feel that I've "failed" at marriage more than once. But, in my heart of hearts, i do cherish the "love" I've had, have and maybe someday have again.... Thanks to each and everyone of you, that give me a "lift" when this life seems to "weigh me down".... for you are a true blessing yourself....

Tuesday, June 6, 2017

What in the World is going on in our World???? And How Do We Feel Now About putting our "Medical Life stories" out there to help others?

I've kept quiet for the most part when it comes to politics, all of the terrorists horrid and unspeakable acts, and all that goes along those things, from emails being "hacked" to the nightmare of situations in Britain, we "swear" we are not going to "cow" down to these happenings and allow them to change our lives,

Yet that HAVE! They have changed the way we live forever. More people purchasing things to protect themselves, whether it be a gun, tazer, baseball bat, or a large heavy flashlight. I am not trying to be "funny" but there are those that are not as thrilled about some types of things for protection, so like myself, I do have a baseball bat, Mace, a small Tazer, and I do have a very HEAVY flashlight.

What really has come to my attention through all of the "political" dilemma and all of the horrid things happening in our county, from Florida to California, to right new me in the Dallas TX area, is that people are now so "cautious" and concerned for their "Well Being" from those who may want to harm us, that things like our own "health matters" seem to be put on the back burner.

I have noticed that all too often there is SO MUCH taking up the internet, the television, everywhere we turn, that anything to do with health, from heart attacks, to RA, Lupus, and other Autoimmunity or Arthritic Illnesses seem to not be mentioned as much.

In fact, I feel that many of us feel "off" trying to discuss our medications, especially pain medications. Here I have been a blogger for many years, and have a Facebook, Twitter, Pinterest, and other forms of online things where I can reach out to others, yet I am almost in "fear" of talking about pain medications. They have gotten such a horribly bad "rap" that some of our very own "key words" we may use in a post on any of these, you worry if they could be misunderstood, or taken in the wrong context. 

I've often said that I try to stay away from talking or writing about "politics" and anything to do with "religious beliefs"... those things are very, very personal for many, and while some can tell their stories about their religious beliefs, there are some that feel it is a private matter. They may not want to talk about it with someone "online".... and if you do, then you kind of wonder if you could be "targeted" again for making a statement that could be taken wrong.... by anyone.

We also feel that used to like myself, I could put my story and "myself" out there online, not worrying about "hacking", or someone getting mad, or you even be "targeted" or watched and now even with medical things, at times I find myself almost "neutering" my own feelings and my own illness issues.

My issues lately have been since I've had the cervical neck surgery that was so much more in depth than we thought, I've not been able to really sit and type much. Thus I've kind of had to be a bit less here online... but then you hear and see things on the television, news, online, and you have to at times wonder if you really want to "give out" as much about yourself, as you may have 10 years ago....

Something to definitely ponder. .... YOUR THOUGHTS.. would be welcome....



Tuesday, May 16, 2017

World Autoimmune/Autoinflammatory Arthritis Day

 In one week we'll be putting the AUTO in AUTOimmune & AUTOinflammatory Arthritis by hosting a virtual awareness race via Facebook & Twitter - and YOU need to help "drive" the awareness!

Learn more at www.WAAD17.org - and invite others (SHARE!)
— with American Autoimmune Related Diseases Association (AARDA), CreakyJoints and International Foundation for Autoimmune & Autoinflammatory Arthritis.
Take a look at the website, and Facebook page! YOU can find out more at both of those.

It's time to take Autoimmune Arthritic Illnesses, and "run" them off the track! 

 


 

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 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.

Challenges

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.


Victories     


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"!! 





Sunday, November 6, 2016

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

 

 

Friday, October 7, 2016

Fearful that something is very WRONG & not sure what I want t do honestly....

First of all, I want to see who reads this. Some of those if they do, should "respond" to me quickly.

IF they DO NOT, then I know they lie to me about "reading" my blog posts and FB posts etc.


I've lost something like 24 POUNDS for no "real reason" over the past about 8 months. I "chalked" it up to stress of all I went through with my Mom, the Dementia, then the grief and everything that is STILL going on even after her passing away.

Funny how even "family" can be so damned "selfish" once they "think" they are getting a little bit of the "green stuff"... or if they are NOT, and so forth.

Anyway, I've been having severe "night sweats", I mean COLD, shivering, soaking wet to the bone, and all onto my sheets, my blanket and so forth. Those have been going on now for about 2 years off and on... but lately they are much worse.

Then I KNOW I am anemic, and have been, I take B-12 injections monthly BUT my RBC IS not BETTER but WORSE, anytime I have labs drawn.

Then there is the bone weary fatigue. I struggle with severe fatigue, and have always felt it was the Lupus, RA and so forth....

I cannot sleep, the lymph nodes in my neck stay swollen and the Left one under my ear is like a rock, and sore all the time.

THEN, I developed this one "lump" about the size of a LARGE marble on my L. Butt cheek about 6 months ago... rather than go away, now it appears like it is "sunken in" around it, with a bluish tint, almost looking bruised YET it is NOT bruising... I've had NO trauma there and now this past week up and down my outside right thigh, I began to "feel" the little lumps, about 4 or 5 of them...

I've looked and researched, and although we know often these things may mean nothing, YET I fear I may have "Non-Hodgkins" Lymphoma.

The "symptoms fit"... and with my other issues like Lupus, RA, Sjogren's, Raynaud's and so forth, my chances are much greater of having something such as this... I shall say no more for now... and see if anyone reads this....

Saturday, August 6, 2016

A bit of catching up, been once again "ill" with "something" a Flare possiblly, but fever, severe body hurting all over, severe headache and NO energy!!!!!

Dropping in quickly to say I am still here! Been sick for two and a half days at least with yet again, fever, severe body pain all over, severe headache, and neck hurting, and my lower sides...plus NO energy...it was as if someone took a needle stuck it in e, and drained EVER BIT OF WHAT LITTLE BIT OF STAMINA I HAVE AND TOOK IT ALL AWAY! I could barely go from one room to the other at my house...so needless to say, I am BEHIND on painting, and everything. this house needs to be cleaned, including dogs bathed, and so forth... and I am way behind on getting the painting done... and I had been on a roll... not sure if it is just the heat that ha s zapped me, even though I have tried not to be in it a lot, or possibly just a continuing LUPUS and RA flare...


PLUS my ankles are "better" but that right one continues to swell if I get up and stand, walk on it a great deal, like painting, standing on the short ladder, or cleaning house... and I am sure the heat does not help it either... I felt as if someone had taken a ball bat to me and beat the hell out of me... honestly...So, I am headed to go and paint... and hope I can continue to "feel well enough" to get somewhat caught up o that, then tomorrow spend the day bathing the dogs, cleaning and and showering me! Anyway, keep my in your thoughts, and keep my kids in your thoughts and prayers...I know they have a an awesome trip to the river, for a week, but will be driving home I think tomorrow with their huge travel trailer in tow...so I wish them safety in getting home... 


This damned Lupus, RA, Sjogrnen's and the like all added up can really put a kink in your life, and you never know when it will hit you like a ton of bricks...

Thursday, June 9, 2016

"Dare To Dream" Sponored by Cure Click and About "Dreaming" and Clnical Trials



If you are a research volunteer, share your story! Tell others what it was like.
If you don't know, but you're curious, check out the stories of real people like you, helping advance science.


Project D.R.E.A.M. Dedicated to Research Education and Awareness Movement


 

Thursday, March 3, 2016

PLEASE JOIN ME in My DAILY NEWSPAPER "All Things Autoimmune"! News you Can Use for all types of health issues... and more...

MY LATEST ENDEAVOR TO KEEP YOU, MY AUDIENCE, UPDATED ON THE THINGS THAT MATTER TO YOU AND YOUR HEALTH MOST, FROM RA, LUPUS, SJOGREN'S, TO FM, CHRONIC PAIN, AND SO MUCH MORE!

Autoimmune Arthritic Systemic Life Daily – Rhia

Please join my Daily Newspaper that can give you much insight into the latest information of Autoimmune, RA, Lupus, Sjogren's. Chronic Pain, FM and many more health issues, from the latest news, medications, and information YOU can use! I am currently working to really "update" and make it "customized" for YOU, my audience! Thank you, Rhia Steele "All things Autoimmune"


Friday, February 19, 2016

The Arthritis Foundation and Arthritis Introspective - Two Creations as One to Give Us Advocates a "Voice" in Our local communities

This is only a tip of the total iceberg from a teleconference I attended last night, but I am totally thrilled about the idea!

The AF has teamed up with Arthritis Introspective to finally create ways "we" as advocates, and Ambassadors and so forth can have our own local community Outreach and Groups available for our towns and counties. I am totally thrilled about this idea and have wanted to do this now for years. So, now seems like the time to get involved in this.


Here is the link to the URL of the non-profit:









They have a Facebook Page also:


I will be posting MUCH MUCH MORE ABOUT THIS OVER THE WEEKEND!

Sunday, January 17, 2016

Setting The New Year Tone as I Deal With RA, Lupus, Sjogren's, Trying to Complete a 3rd book, Life, Family and so much more...

Every Year so many of us have a "List to Live By"... for the New Year. Some call it a list of "resolutions", "Changes", a new way, a different attitude, motivation for making things different, making what you want in life happen... Whatever you "call" it... we try to set the "tone" for our New Year.

Whether "chronically ill" or not... each of us want things to "change". Now, many of us may be completely satisfied with our life "as is"... but human nature gives us this innate intuition to never stand stagnant, to always want to evolve, to make our mark on the world, or at least our own home and community. As a whole, although when you hear the news it does not sound like it, I still feel "human nature" basically wants to "do well"... to help, to be that change maker...

As I have prodded through these past 7, 8, 9 or more years of chronic illness and chronic pain, I've noticed that it seems for the majority of us that are chronically ill, whether it is an Autoimmune Illness, Heart Disease, Cancer, or any number of diseases, syndromes and/or illnesses "we" as a whole tend to try even harder to "change" what that disease is doing not just to "our bodies and lives" but to all the others we see on a daily basis suffering from the very same illnesses. We tend to be more a part of the "change makers", whether that means a local community awareness, or a National Campaign and being an "Ambassador", Volunteer, Activist, a "voice" such as helping so many of our non-profits, such as The Arthritis Foundation, The Cancer Society, The American Heart Association, Lupus Foundation, The Pain Foundation, and the many, many, charities and organizations that "go to bat" to fight not only locally, in our states, but nationally to make awareness known within our Governmental Bodies, to get finances for more research, the race for a cure, for answers as to "why" some of us suffer so badly from such horrid illnesses, what causes them, how to treat them without destroying a patients life, and how to give people back their quality of daily living!

So, when our chronic illness and/or oain issues bring us to the place we no longer can "work" our jobs, or do many things we once could do, we find ourselves seeking a way to help STOP these diseases from ruining more lives in the future. With the technology, and how we have evolved globally, with a few key strokes, we can contact our state, our county, our city, and our National Government Officials. We can provide all types of very usual assistance without leaving our homes to "make that difference" we so want to make in life. I know some people that probably spend more hours a day now as a volunteer, activist, etc... than they did actually working a 9 to 5 job that nearly killed them... but we can "take off" for a week if we are ill, or work an hour a day, or a few hours a month.... however much "we" want to put into assisting these foundations, is so appreciated. And many of us, like myself have been even honored and rewarded by being sent to Washington DC to stand on Capitol Hill and tell our stories! So, activism, can be and is such a rewarding part of a chronically ill person's life. We feel we are "contributing" even though we may not be able to work hours a day, or leave our homes... we "make a difference"... and not even spend a penny... but give of ourselves and our time... which is definitely valuable... sometimes more than money... the value of "our time"....

I had been looking on Twitter a bit ago, and there was a great idea that I decided to not only to share, but to do. Take an empty jar, and each "good thing" that happens within the New Year, jot it down on a small piece of paper and put it in the jar. Then in the start of the next New Year, get those out and read them. As I said, all too often we "recall" all of the crappy, the bad stuff, that happens within a years time, yet we don't remember those "good moments" and maybe they are "small" but memorable. Then see just how many have filled that jar from that year before. I have already been able to write down 3 or 4 things and put in the jar, and this is the middle of January! Maybe I will need 2 jars to "hold" onto those good moments... those moments that help to make the bad ones seem not so bad.

So, the "title" of this post, is a bit deceiving in some ways. I gave the impression this was going to me more about my own "revelations" for the New Year, and the "tone" of how I "want" my year to be for 2016. I've never been one to set expectations to high, but I do try to give myself "goals" to achieve... yet I have also had to learn that when you have illnesses such as Lupus, RA, Sjogren's.... and so forth... those things you "want to achieve" may get put on the back burner, for those times you are in a "flare", or you are having surgery, or sick, or going to the doctors... there can be all kinds of things that interfere with those "good intentions"... and it is not that you may not achieve them... just not in the time frame you thought you would. I had wanted to be a published author for 20 years plus, and then was with two books within less than a year between them! My 3rd book, has been sitting here mainly completed on my computer, but needing to be put in some type of order now for gosh 3, 4 or more years. But, life and illness... have had to come first... thus the book WILL GET PUBLISHED, but I no longer "pressure" myself... Due to things beyond my control over the last almost 3 years, I began getting it together, then had to leave it... now it will take me weeks to even get back into where I am, what I have in it, and how I want to continue... and I will get there... but I have to feel well enough "physically" to be able to sit at the computer several hours at a time, hopefully with little interruption for weeks, at least 2 or 3... or I will never be able to "delve" into where I am, and where I want to go forward.... so I may not be able to do as much as I want on it, until I have the cervical neck surgery... I can't sit very long at the computer typing right now because of that disc... when it presses down on the nerves, and I have pain in my shoulders and down my arms into my thumbs... it makes it very difficult to "find my voice" to write...

It is different with my blog... I can write a bit, get up, do a few things, and come back to "finish" the post...

But, the "tone" for my 2016 is to try my best to get as far on the 3rd book as I can to prepare for it to be published. I also need to get myself back into "physical shape" and I mean back to walking when it warms up, taking the dogs out walking, and getting out of the house... but I also face at least the one surgery... and maybe two this year... my lower lumbar and sacral spine gives me hell when I try and sit for very long also... and after Friday's ordeal of driving and doctors in Dallas all day long, I have suffered with a great deal of back and side pain... hell I've wondered if I have another kidney stone, the pain has been so bad off and on...

So, the "tone" again is to do as much as I can personally to my home, bless it's heart it needs so much work, and myself... and try to "enjoy" each day whether ill on the sofa, sitting here at the computer writing, or online...walking my pups... walking myself... and hopefully spending several times this year for a day or overnight stay at Winstar! Gosh how I miss that Casino! I walk in and the world melts away, at least for that time you are there...

So, take time to "set your tone" for 2016.... make yourself a "good moments" jar... and in 2017 (when I get to trade in my Prius for a New Model) see how many of those truly make you smile.....

Sunday, January 3, 2016

Starting 2016 The New Year Off Right! Lupus, Joint problems, Surgeries, Pain Pump Replacments, Cervical Disc Surgeries, & Seeing the "Positive" Side of a New Year.

Morning Everyone! Well, I must say, I know there are MANY, MANY of us that are GLAD to see 2015 come to a close. Gosh, the number of people that I've came in contact with both on Facebook, and here in my hometown, that have either endured so much loss, or have been extremely ill, in the hospitals, had surgeries, have had major issues with Lupus, RA, Heart problems.... Sjogren's and the list just continues.

I know I face, (now the the 1st one the pain pump replacement surgery is done) at least one surgery. I have to have that cervical disc above where my doctor repaired the others (he is kind of wishy, washy but I think it's probably C-2-C-3.. not sure but am going to look it up. He did an X-ray and saw that I have a disc, at least one, that is 80% "collapsed" which is causing all of the severe neck, shoulder blade, and down my shoulders, into my arms, wrists and even thumbs... pain... at times it is almost unbearable... if I drive even to Dallas about 40 miles or so, it hurts so badly... so I know that has to be dealt with.

Also, the lumbar/sacral disc at L-5 (I think) and S-1, anyway, right at the bottom of my lumbar spine where it begins my sacral spine is also a mess... plus I have some issues with the "opposite" of scoliosis, where my spine tilts "inward" rather than outward... and I've had a "sway back" all my life... so that is certainly not helping but I don't think there is anything they can do about that, but he can fix the disc down there.

Once those things are done, and then I can go to my Rheumatologist, and we re-evaluate all of my medication for RA/Lupus etc... and possibly make some changes then I may begin to see some positive changes for me as far as function of what I can do, and lesser pain, hopefully.

So, even though I "make" A New Years "change things" list... some of it is more those types of things, so I can again have some quality of life...

I also know we must "deal" with my Mom, and all that has been going on with her.... she is much better after the injections into her lumbar spine, which is awesome, but the issues about possibly having "dementia", or worse, ALZ, have to be looked in to...

Other than that, I want to be able to do MORE of my advocacy work, and get back to cross my fingers, eyes and toes, of finishing my book... I've been trying for 2, almost 3 years now, and was on a roll, then between the accident with Jim, the lawsuit, trial, illneses, my teeth and losing those, then Mom being sick, it seems I cannot either find the time, or have enough "energy" to stay and type on it. I have some other things that I had not thought about that I am adding to it. When I was telling one of my high school friends I grew up with about my "home life", when I was young... she told me that I really needed to address those in the book. They in themselves caused me to "think" and do, or not do things throughout my entire life. Nothing that Dad did that was "bad... he was a great Dad, BUT his being over controlling, even when I was in my 30's, and him trying to "help" but he was also trying to place things that he went through during the depression, "on and in my life"... and thus things like me marrying much too young etc... all have had a very prominent effect on how I've lived, and the things I've done, and why I didn't do some of the things I so wanted to do....

I inend on giving YOU, my BLOG READERS much more "facts" and information about "All things Autoimmune"... I hope to really ADD some very important issues, from medications, from how the government effects our lives, about the latest things to get help. hopefully get more people involved in GOOD clinical trials (I know people that have been truly amazed in clinical trials) and work with WEGO, The Arthrhtis Foundation, With the Pain Foundations, plus others such as the Lupus, Sjogren's, RA... and more things that can help YOU as patients, caretaker's. family, friends.... to understand the way these illnesses effect each and every part of a life, from physical, mental, emotional, spiritual... and why "we" do or do not do, things.... due to often "invisible" illnesses and pain....


One for instance, I had "major surgery" last Monday. I had my pain pump that "stalled" replaced. I am really not supposed to be doing much of anything, BUT I am by myself for now, so there are things I must take care of... and can't wait... So, I had not been to the market in a week, and needed a few things... NO, I was NOT feeling the best, but I got dressed, "forwent" the makeup, and went to the market. Well, I was not "moaning" in pain, or even acting as if I had "surgery"... the only things I did do, is ask the guy bagging my stuff to keep my "bags" light this time, because I was not supposed to life anything over 5 pounds, and was not supposed to use my arms over my head... well there are MANY things a person needs to get, reach, etc... and it calls for putting your arms over your head..

Of course I got home, and I was "good" I did bring in one bag at a time, rather than grabbing several, as usual... and tried NOT to do anything he told me NOT to do... yet, people around me in the market, unless I "told" them would have never known I had "surgery" or that I was in pain..... we sometimes "hurt" and it shows.. but we also have learned to "suck it up" at times, and try to not let that type of thing effect our lives... I don't want to think someone feel "sorry" for me... etc....


Okay, well I need to get some other things done, but I wanted to "catch up" as to what 2016 shall mean HERE, and what I plan to try and do to HELP MY READERS!

Wishing YOU and YOURS a blessed, healthy, peaceful, calm, faith filled, renewed hope and love for 2016!

Rhia

Friday, December 11, 2015

"Sharing" My Annual Christmas Letter with Each of You! - And Wishing you a Wondrous Holiday Season Despite Chronic Illness/Pain,RA,Lupus,FM, Sjogren's and More

I debated as to whether to "share" this with everyone here or not... but I feel I truly need to share "my own family, trials, tribulations, and hope that through my own "life's eyes" you can find your own "spirit" to write, email or tell your family, and extended family that "life" can sometimes be not so great, yet the "hope, faith, peace and spirit" can exist in spite of all that life decides to throw our way..... so here it is....




              ********** And Here’s A Merry Christmas Straight to You From Texas!*********


I feel as if i just completed my “Annual Christmas Letter” and once again, another year is flying by quickly. It is like with each year that passes, they seem to be shorter in length. Yet, it seems it takes me 3 times as long to accomplish anything!


Age, a subject most of us prefer not to talk about in length. Another thing is that with each birthday celebration, I feel like they come around twice a year rather than once. As I have told my son and daughter, Jason (who is 37), and Amanda (who is now 31), enjoy each moment, and savor all of the memories you can soak in, because as it used to feel when we are young, time seems to “drag” by,

Then we become adults with jobs, families, spouses, and the hectic times we live in, and time just flies by, and sometimes our memories of the good things we have seen, done, accomplished, been through, all tend to fade…

The holiday seasons always tend to bring back so many wonderful memories, of those Christmas’ when the kids were little, all of the decorating, baking, cooking, and parties that I had and went to, and how life gives us a great deal of good times, yet we tend to take them for granted. I know I have at times for sure.

Then with age, definitely comes some wisdom, and as I look back, I have had many “fulfilling” adventures, even though at the time I may not have realized it. Yet, when I think about my trips, whether vacations, with my parents, or with my own kids, or the times I took off on my own, and kind of let the wind carry me away… I always knew my “destination”… but it was always the journey to get there that made it exciting, and finally allowed to me look back and see just how “strong” (emotionally and mentally) I’ve been for the most part in my life.

So, as I try my best to “tap out” another Holiday Letter, I find myself almost as a loss for “words of true spirit” and good things from 2015. There is so much that has happened over the course of 20 plus months to my family and myself, that it will take another small “novelette” to give all of you the details of what has gone on.

The accident in 2014, that Jim, my husband was in, and the lawsuit that followed, finally came to a close the first week in November. Much to all of our surprise, it did NOT end on a “good note” for us. Basically, the jury decided it was NOT the truck driver’s fault (even though he completely ran over the back of our car and never slowed down etc.) and even though the other side tried to say our “car” was not in good shape, (they had someone say that the hood flew up while Jim was driving the car”, which I know and all of us know that did NOT happen, and never would have. My car, was in perfect condition to be on the road, and that hood was completely latched down, and did not just “suddenly” fly up. We have no way to “prove” it, but even our own lawyers tend to believe there was some “hush money”, and these “so-called” witnesses, that happened to have been outside in their yard, on a very busy I-45 coming into Dallas, and at that moment “saw” the hood open… that chances of that, you could win the lottery before that would happen. Yet, we have no way to prove that people lied on the witness stand, and I also feel there was something odd about the “jury”… I felt again, someone had been “paid” to keep their mouths shut, OR rule “no one at fault”… anyway, it left all of us devastated, more than you can even know. That accident has “wrecked” Jim’s life, especially physically, but mentally and emotionally. It totally wrecked my life, harmed my own health, and upset of course Mom, and my two children Jason and Amanda. So, due to a “truck driver” who was “on a cell phone with his brother”, and ran over the back of our car, we still basically “lost” any and all help with Jim’s medical bills, his future needs medically, he is unable to work full time due to what they now feel was more of a concussion than they first realized, he is partially paraplegic, and can walk on a cane some, but needs a wheelchair if it is a longer distance… and more than that, he moved back to Seattle 6 months ago. I am still not even sure why, other than he felt he was a “burden” on me… and that my health was suffering, and I was having to do everything, he could not cook, drive, even get down the steps by himself, and then I had Mom’s things I am doing also… thus we are still friends, and talking, keeping in touch… but whether we will ever “regain” our 13 YEARS together, 10 of those married this year in April, is still yet to be seen.

That is why partially I almost decided “not” to write this Annual Christmas Letter this year. I feel there is not a great deal of “good” that has happened to any of us over the course of 2015. In fact, Mom has not been well, and she has issues with her lumbar spine, and is getting ready to have lumbar injections in the next week or so. My internal “pain pump” also “stalled”, & I need surgery to replace it. But. 4 months ago I came down with two “lumps” one on each upper thigh, originally thought to be cellulitis. After 4 or 5 weeks of antibiotics, I was sent to a surgeon, to “incise” them, and he was NOT the doctor who should have done those procedures. I now have been going to a wound care specialist for 4 weeks in Dallas every week, so they will get well enough I can even have surgery. I also have lumbar/sacral back problems that need surgery, and without my Rheumatoid Arthritis medications, (they took me off them when I had the increase of infections with the cellulitis), so my pain level, without the pain pump, and even on oral medications do not even “touch” the horrid pain I’ve been in now for 3 or 4 months.

Mom also had some issues due to medications, and had some kidney functions problems, that they feel have been cleared up. But, she is also in pain, with her back, and the sciatic pain, but also she at 80 this year is suffering from arthritis pain several places. She had been on Celebrex, but it is the NSAIDS that caused the kidney function problems, so she cannot take any NSAIDS to help with arthritis pain. She is also on some pain medication, and we hope the epidural injections give her some relief from the back and sciatic pain.

Amanda, Jimbo, Heather, James, and Logan are doing well. I finally got to visit with them during Thanksgiving. It had been a long time since we had seen one another, so I was so thrilled that they got to come up, even though it was not long enough. Heather, their daughter will graduate this year, and already has decided to go into the Marines. She wants to be in the medical field, and feels enlisting will give her the education, the discipline and all she needs to succeed in the medical field. I am so proud of all of them. They are a wonderful wife and husband, Mom and Dad, and Amanda is an awesome daughter!

Jason has a new job, working with some electrical devices that he enjoys. So, he is doing okay. He would like to get a bit more established, and get an apartment up in the area where he is working. So, he is busy working to fulfill his goals, and he also plays guitar and sings with some of the local bands in the Dallas area. He really loves the guitar and playing. He has always been so great at that. I love music, dancing, and singing… and wished I had the talent many years ago, to do something in the music field.

But, I do write lyrics, and still practice my singing and playing the drums sometimes. I just bought a pair of boots and jeans (well waiting on the jeans to come in, I ordered them too large, so waiting on the smaller pair to come in), so I can go out and see if I can still “scoot a boot”. It has been a long time, and have not tried since both knee were replaced. So, I hope I can still love across that dance floor.

From all of us, myself, Mom, Amanda, Jason, and family… we wish you a very Happy and Merry Christmas! May the New Year 2016, bring you peace, good health, happiness, and hope. May you be blessed and overflowing with all things good!

Love you…. Pam (Rhia)

Tuesday, November 24, 2015

"Thankfulness" during a World in Chaos, those who do not Value Human Life, and things Life throws our way, chornic illness/pain, yet finding what truly matters most....



As the holiday to be "thankful" grows near, may you find many reasons to be thankful for, from family, friends, to all the beauty life bestows upon us. I realize for many of us, this holiday comes with a very mixed time of emotions. When our world around is so full of hate, terror, harsh, and those that will harm innocent people, trying to look past those actions are very difficult. With the events so fresh in our hearts and minds of those who want to take our freedom away, to scare us so badly, we fear going out and enjoying life... May all of us find that special place within the depths of our souls, to "go forward" and be in reverence of what we do have.... 



 


As the miles physically are far between us, within our hearts the warmth and joy of family and friends keep us close to one another. As I said on my other page, this is a holiday of thankfulness although with the events that have taken place lately, along with those out there who would rather do us harm than even live themselves, it is difficult to find those reasons why we are truly thankful. I also know that myself and my family included, have experienced some life changing events for 2015. Many of which, we not only unexpected, but turned our lives somewhat into chaos. I certainly know it has for myself and my own family. Thus with those things again, trying to truly find things we are grateful for, can be difficult. We are human, and we at times reach a crossroads that is not what we planned. So, as we come together, whether physically, or mentally and emotionally, may we find those things that bless us, give us reasons to be so thankful for today, tomorrow, and the future ahead of us. May you and your find the peace, love, hope, and faith that shall sustain us... May you be safe, and healthy, and enjoy your family and friends... With Love, and Happy Thanksgiving, Rhia