I have been nominated for Facebook this year! |
"Through my heart's work of writing, I share with you my complex journey a top the mountain, sliding down, crawling up, & living through the realms of Autoimmune Arthritic Illnesses. Taming "The Wolf" Thru each Day... One Step at a Time … Together We Are Learning to Survive. Please follow along, to New Beginnings - looking Thru the Window Pane of Pain in life where we shall find our journey leading us to - New Perspectives
Showing posts with label facebook. Show all posts
Showing posts with label facebook. Show all posts
Thursday, July 1, 2021
Wednesday, November 14, 2018
"Giving Tuesday November 27th 2018" STOMP OUT BULLYING!!!! The "Global Movement"
Giving Tuesday, the Tuesday after Thanksgiving, is a movement to create an international day of giving at the beginning of the Christmas and holiday season. On this day of GIVING, we ask you to think of the youths who we work to keep safe at school every day .. the youths who we work to keep safe online... the youth whose lives we save every day.
World Kindness Week is November 13 - 20th. The purpose of World Kindness Week is to highlight good deeds in the community, focusing on the positive power and the common thread of kindness that binds us. Today and every day, focus on the good and spread kindness wherever you go. One way you can do this is to stand up for people who don't have a strong voice. You can also use inclusion, unity, respect and acceptance to spread kindess to the people around you. YOU can make a huge difference.
At STOMP Out Bullying™, we LOVE to share messages and stories of kindness, and to hear yours. What are your plans for this World Kindness Week? Share your thoughts with us on social media and let’s keep the global conversation on kindness going.
At STOMP Out Bullying™, we LOVE to share messages and stories of kindness, and to hear yours. What are your plans for this World Kindness Week? Share your thoughts with us on social media and let’s keep the global conversation on kindness going.
Friday, January 5, 2018
When a very "Special" Opportunity Arrives be sure to take the steps to help someone....
Happy New Year and the beginning of a very COLD 2018 to MOST of the nation!
I had an amazing opportunity this week. One that I never expected to happen, but the way it did, and how it did, brought tears of joy to my eyes.
Many of you know, that I am divorced. Albeit, WE thought we would be "old and rocking" together in a swing on our front porch, for many reasons, some I feel are senseless and we should still be together, but it takes TWO.
Anyway, my ex husband has a daughter. He has not seen or even known where she was for over 30 years. The last time he saw her, she was about 2 years old. He was young, the Mom was young, and it was just not meant to be at the time. But, things happened, that really should never have, and the Mom caused a great harm to a Dad and daughter, that I hope after all these years, that some of those precious days can be gained back.
I got a private message on Facebook in fact on Tuesday. I "immediately" recognized the name. In fact I had helped "search for her" for years, trying to help him get in touch with her. Once she was over 18 years old, he felt she "may" want to know him, or maybe not. But, he definitely wanted a chance for them to find one another, and see how the other felt. All the while recently she had been doing the same, but it never "aligned" until it so happened that "my name" associated with his, and some of my friends on Facebook were her friends also.
I got the message asking me if I was married to this man. I said that "yes" we were married for almost 10 years and together almost 13. But, things changed and he is now back in the Seattle area. Of course I already knew who she was, but I did ask. It still blows me away how people's paths can cross, when you least expect it.
For one, I will admit, he left, and I honestly never understood, WHY, he didn't stay because he still was in love with me, and him I.. yet he battles with thinking that if a couple "has a disagreement" then something is wrong with the relationship. He came from a very "not just broken" but completely "battlefield" of a home, where the Father was an abuser, and the Mother either mentally unstable, or caught up in some really horrid things and people. In fact she died when he was only about 9 years old. His Dad had been dead for 3 YEARS before he found out! Like I said this was a battlefield of a wrecked home.
Here is the main "scoop" to my post.....
I have a wonderful story to tell and this was just incredible for this to happen right at the brand New Year! Someone reached out to me, that thought I "may know" from the searches the person done online. They found my name along with someone's name and reached out to me on private messenger here yesterday. I KNEW immediately who this person was, and that actually who they was looking for had been searching a very long time to find them also.
So, I of course said yes I know them, and yes I can contact them. I told them that they had been searching for a long while and in fact several years ago, I helped someone search for this exact person. So, I made a couple of phone calls, and the two that had not been in contact with one another for something like 30 years almost, "connected" yesterday. Both had been so concerned that the other would not want anything to do with them, but it was just the opposite, they both had been looking for each other.
So, I got a beautiful message from them yesterday evening, telling me that they were so very appreciative of me finding out and helping to get them together after all these years. It is "close family" so when anyone is searching for a very close family member that they had "lost touch" with and had been searching, hoping and wishing it would someday happen, yesterday that miracle unfolded right in front of me. So, even if "my New Year" sucks, what happened yesterday was the BEST New Years blessing I could ever hope for. I realize all too often now, some get so caught up in their own situation, that they may not take the time and effort to do something like this, but of course it was never in my nature to not reach out and try to help. I am so totally blessed, and I now also "found" another person who I also was wanting to find for a long time also....
I had an amazing opportunity this week. One that I never expected to happen, but the way it did, and how it did, brought tears of joy to my eyes.
Many of you know, that I am divorced. Albeit, WE thought we would be "old and rocking" together in a swing on our front porch, for many reasons, some I feel are senseless and we should still be together, but it takes TWO.
Anyway, my ex husband has a daughter. He has not seen or even known where she was for over 30 years. The last time he saw her, she was about 2 years old. He was young, the Mom was young, and it was just not meant to be at the time. But, things happened, that really should never have, and the Mom caused a great harm to a Dad and daughter, that I hope after all these years, that some of those precious days can be gained back.
I got a private message on Facebook in fact on Tuesday. I "immediately" recognized the name. In fact I had helped "search for her" for years, trying to help him get in touch with her. Once she was over 18 years old, he felt she "may" want to know him, or maybe not. But, he definitely wanted a chance for them to find one another, and see how the other felt. All the while recently she had been doing the same, but it never "aligned" until it so happened that "my name" associated with his, and some of my friends on Facebook were her friends also.
I got the message asking me if I was married to this man. I said that "yes" we were married for almost 10 years and together almost 13. But, things changed and he is now back in the Seattle area. Of course I already knew who she was, but I did ask. It still blows me away how people's paths can cross, when you least expect it.
For one, I will admit, he left, and I honestly never understood, WHY, he didn't stay because he still was in love with me, and him I.. yet he battles with thinking that if a couple "has a disagreement" then something is wrong with the relationship. He came from a very "not just broken" but completely "battlefield" of a home, where the Father was an abuser, and the Mother either mentally unstable, or caught up in some really horrid things and people. In fact she died when he was only about 9 years old. His Dad had been dead for 3 YEARS before he found out! Like I said this was a battlefield of a wrecked home.
Here is the main "scoop" to my post.....
I have a wonderful story to tell and this was just incredible for this to happen right at the brand New Year! Someone reached out to me, that thought I "may know" from the searches the person done online. They found my name along with someone's name and reached out to me on private messenger here yesterday. I KNEW immediately who this person was, and that actually who they was looking for had been searching a very long time to find them also.
So, I of course said yes I know them, and yes I can contact them. I told them that they had been searching for a long while and in fact several years ago, I helped someone search for this exact person. So, I made a couple of phone calls, and the two that had not been in contact with one another for something like 30 years almost, "connected" yesterday. Both had been so concerned that the other would not want anything to do with them, but it was just the opposite, they both had been looking for each other.
So, I got a beautiful message from them yesterday evening, telling me that they were so very appreciative of me finding out and helping to get them together after all these years. It is "close family" so when anyone is searching for a very close family member that they had "lost touch" with and had been searching, hoping and wishing it would someday happen, yesterday that miracle unfolded right in front of me. So, even if "my New Year" sucks, what happened yesterday was the BEST New Years blessing I could ever hope for. I realize all too often now, some get so caught up in their own situation, that they may not take the time and effort to do something like this, but of course it was never in my nature to not reach out and try to help. I am so totally blessed, and I now also "found" another person who I also was wanting to find for a long time also....
Friday, February 10, 2017
I was given a "press release" that I am very proud of ;)m- Goes to show ANY Advocacy Work is well worth doing especially for Chronic Pain and Illnesses
I've really been down and out lately at the numbers that are coming to my blog. Used to I would have at least 75-100 and sometimes 300 or over. But, over the past 4 months, even before I went into the hospital I noticed a huge drop in those coming to my blog.
I know "Google" have changed a great deal of their SEO stuff, BUT, I have many of their ideas and recommendations that I use. I've not went through the entire "book" of recommendations, BUT, I usually post everyday, sometimes more than once. I do miss sometimes, such as when I was "out of pocket" due to the hip fracture, but even then I still posted once I was feeling a bit better and had my laptop to post to all of my social media places.
The one thing that I have not done "much" and continue to try and not do, is get too deep into the "political" issues that are invading our lives DAILY! I know many are like myself and HOPED that AFTER THE ELECTION some of the DAILY CRAP WOULD STOP!
Well, I should have known much better than that. With the "Donald Duck" elected LOL, there is NO way to SHUT HIM UP NOR the NEWS. Everything he does, tweets, says, posts, and probably what he eats for his 3 meals a day are NOW LARGER ISSUES ON THE NEWS, THAN THE ELECTION!!!!!
I am SICK TO the point of NAUSEA hearing about "The Duck" this, that and the other.... I cannot even "type his name" it makes me so ill to see or hear about one damned thing he does.
I was a "voter" and I've voted for many years, without missing many. Of course I feel if we "vote" then we do have a right to GRIPE! But, for those WHO DO NOT VOTE, then you do not have the RIGHT TO FUSS because you did not allow YOUR VOICE TO BE HEARD!
I KNOW that my "typical" daily life may not interest you. thus I "try" my best, to put something useful, fun, information that you can use, new items from The Arthritis Foundation, to WEGO, to other health and human information especially for us that remain all too ill, from Chronic Pain and/or illnesses.
I am HAPPY that although I had TWO HIP FRACTURES, now in 3 days it will be 90 days since that 1st surgery, and I am doing very well. Even without a cane, and in fact, I left it at home yesterday and did not even take it with me.
I realize at times, I am still leery about being almost too cautious, in fear that another fall could even be worse. I also am in fear that if I don't try and do all I can to "never cure" the osteoporosis, BUT try and build "muscle" and "put protein" back into my body, I have a far better chance of not being a "fall victim".
The woman that was in the room at the Rehab place with me for part of the time, had already been in the hospital like 3 times BEFORE CHRISTMAS, IN LIKE 3 MONTHS! She had pneumonia a couple of times and was put in for that. She has also been a "Diabetes 1" victim since being a teenager, which I watched even after all these years, especially without a proper diet like she should have had in Rehab, she was always having way too many problems with her Diabetes. Then she had fallen and been in Rehab before Christmas I guess in August or September, then fell broke her pelvis, WHICH SURGERY OFTEN CANNOT REPAIR A BROKEN PELVIS, thus you have to spend WEEKS AND WEEKS IN BED TO ALLOW IT TO HEAL ON ITS OWN! Her pain had to be horrible. I know HOW MUCH PAIN I WAS IN WITH THE FRACTURES TO MY HIP, and I was yelling, screaming, cussing, bitching, crying and my entire neighborhood probably thought someone was attacking me, or I had just lost the rest of my mind. MANY of them came when they saw my son's vehicle here to ask what happened, that I was SCREAMING AND CRYING SO MUCH, they could not imagine what had happened. No one I guess heard me screaming and yelling and crying, while I was still in the house for over 3 hours, being too stubborn to call the ambulance. I "hoped" I had a "bad bruise" NOT a damned brake to my hip. But, alas dammit the news was worse, because I had TWO breaks in it.
I cannot begin to even express "ALL I LOST" in those weeks and weeks, through the surgery, through being an inpatient in a Rehab Center, from my own self-esteem, pride, I felt unworthy, useless, a burden, and just a totally screwed up person to be going through this and making my kids go through this also.
LOTS played into my issues with the entire thing, because of losing Mom to Lewy Bodies Dementia in June of last year, and having to take care of her, the 6 months prior, I was already more than behind on "caring for me"... I cancelled neck surgery at least 4 times, and just put my RA medication on hold, since I just felt I COULD NOT leave and go to Dallas for a few hours.
I AM STILL trying to "clean up" everything that needs to be done, and actually am totally confused, because I feel I did not "grieve" enough before trying to begin taking care of other affairs once she past away, that now I get to a place I am not sure what, what not, which, how, is done, not done, and my own "Christmas Present" to myself, is still sitting in my hallway, along with the new rug for my living room. But, now with the hip thing, I fear trying to turn the old sofa over in order to get the backs off of it. That is what has to be done, before it can be taken out of the house. Once that is gone, I can once again clean the hardwood floor very well, put the rug down and get my new sofa/futon/chaise lounge finally put up and using it.
So, NO the political issues I speak of are usually tied into "medical things".... whether clinical trials, or laws, or trying to get the government to fund certain research projects, and so forth, my "own personal beliefs" in whom should be or not be President, and so on down the agenda, I feel I did my part, I can now bitch all I want, AND then go on with my life and pray we have NO ALLIES by the time one YEAR has gone by with the "Donald Duck"....
P.S. I WILL POST THAT PRESS RELEASE AS SOON AS MY NEWSPAPER PUTS IT OUT.
Friday, November 11, 2016
WEGO Health Day 11 - Bloggers Challenge a "TOP TEN "must follow" Lists From Facebook Twitter, and Blogs....
This one is kind of a mixed up "bunch" for me. I have those that follow me on Facebook, but they may rather follow my blog posts, or I know I have a good deal of following on Twitter. I really never have "kept up" with the number that come back again and again, but do know those that comment and read often, because they either give me a thumbs up, mention my "Newspaper" yes, I do have a Daily Newspaper I put out, FOR Chronic Pain, Chronic Illnesses and Dementia. I send it out daily on Twitter, Linkedin, FB, plus there is a follow page on my blog, in case you want to joint my daily Newspaper. I will say the newspaper "seems" to be giving people a great deal of information, because the articles are from reliable sources for the most part, I have also "tailored" it for those with the Autoimmune, Chronic Illnesses, such as Diabetes, Heart problems, and so forth, plus Chronic Pain, and all that comes with the controversy on it now, especially on our medications for chronic pain. Plus I added "Dementia/Alzheimer's" after my Mom passed away last June 9th, due to the fact I "feel" that it may run in our family, on Mom's side. Both of my Grandparents had it, but my Grandfather, had full blown very difficult Alzheimer's. Mom's turned into an aggressive, what we feel was the "Lewy Bodies" Dementia, that I watched take a woman of 78 years old, who could still drive, clean her home, and cook, etc... to within 4 months go to being bedridden, in diapers, could not even remember her home, who she was, and mostly had no memory most of the time of who I was. Within 2 more months it took her life. One of the most difficult times in my life, and something that has "changed" me forever, in SO many ways.... some good for the most part, and some may say things that may not be so good... but I know to just roll with the flow of it all, and NEVER take ONE MOMENT of life for granted.
So, Here is kind of a "mixed list" of blogs, Facebook friends, Twitter followers, and those that comment, and are "followers" in one way or the other....
Facebook Followers and I follow them also
Denise
Venetia Shafer- FB
Amanda Matheny - FB
So, Here is kind of a "mixed list" of blogs, Facebook friends, Twitter followers, and those that comment, and are "followers" in one way or the other....
Facebook Followers and I follow them also
Denise
Venetia Shafer- FB
Amanda Matheny - FB
Cynthia Carr Czaplicki - FB and she really is wonderful about making comments and reading, plus she is a relatively new friend there.
Betty Walters - FB
Raymond Veditz - FB
Judith Flanagan - FB
Barby Ingle - FB
Nancy Hershalman Gipson - FB
Jean Marie Ely Breaux - FB
Jane Gill-Wilson - FB
Blogs I follow (and love to tell others about)
Arthritis Foundation (I know it is a website but they have a blog also)
The Hurt Blogger
Rheumatoid Arthritis Guy
All Flared Up
Little Miss Autoimmune
Barby Ingle (all of her writing, articles, books & more)
Float Like a Buttahfly
Not Standing Still Disease
An Autoimmune Arthritic Systemic Life (of course my own ;)
WEGO Health's Blog, & ALL of the Help. Challenges (good kind) and assistance they give to all of us!! (Website in general)
Creaky Joints
Twitter Followers
JoJo
@SuzieMay08
Told You I Was Sick (Also great blog/writer!)
PajamaDaze
Arthritis Foundation
WEGO Health
Cure Click
Cluster Shade
Patient Power
Elizabeth@themamaspace
A Chronic Voice
And there are so many more, that either follow me, or we follow one another on Facebook, Twitter,Linkedin, Blogs, and even emails. There are many URL's that truly "help and guide me" at times. US Pain Foundation, and International Pain Organization, Med-Page and any "medical newsletters I get and save. they are also a wealth of information.
So, to those who I may have "missed" here, I apologize, because I do see and read you, your posts, and know much about your lives and what all of you are going through.
So, Here are my lists!
#HAWMC
and by the way, here is the link to my newspaper and the name of it!
http://news.autoimmunearthriticsystemiclife.com/#!headlines
Life Chronic Pain & Autoimmune Systemic Diseases & Dementia®
"All aspects of autoimmune & chronic pain illnesses, fighting to survive & grow past them"
Sunday, August 7, 2016
Sunday's A.M Addition to my Newspaper All things Autoimmune, Chronic Pain and Dementia! And Suggestions?????
My Brand News Newspaper for Sunda AM is OUT and Here is the link:
http://news.autoimmunearthriticsystemiclife.com/#!headlines
This is MINE to Add, change, or whatever I feel my audience" wants to read, see, hear more about and so forth (as far as health issues go) PLEASE FEEL FREE TO MAKE SUGGESTIONS...if yu have another health issue, or would like to see more about something in health, let me know and I can go in and get more article and information about those topics as well as the ones I am giving you!
I am DOING THIS FOR YOU!!! "My "Audience) So, post, email ,speak up even post on the paper itself and give me your personal thoughts and issues!
http://news.autoimmunearthriticsystemiclife.com/#!headlines
This is MINE to Add, change, or whatever I feel my audience" wants to read, see, hear more about and so forth (as far as health issues go) PLEASE FEEL FREE TO MAKE SUGGESTIONS...if yu have another health issue, or would like to see more about something in health, let me know and I can go in and get more article and information about those topics as well as the ones I am giving you!
I am DOING THIS FOR YOU!!! "My "Audience) So, post, email ,speak up even post on the paper itself and give me your personal thoughts and issues!
Friday, March 11, 2016
Dealing with Eldery Parents who have Alzheimer's or Dementia, when you, yourself are dealing with Chronic Pain and Illness...
posted this on my FB page, and I will put it here also... I will be doing some work on my blog, my book, my new newspaper I have began, as well as some other things around my home, and some thinking about life... and how to deal with some really tough issues.... I maybe "away" from FB for a couple of days.
There are some things I really need to get to working on as far as this new newspaper I am staring. I can customize is a great deal and it could really help me with my blog, as well as with my books , and my next book...plus lots of my advocacy work...getting information out there that would really benefit many people and help make what I want to happen possible ( I Hope)...I have also had some new ideas for my 3rd book unfold in my mind over this past couple of weeks, and although I jotted some of it down, I would like to start writing on it, in the beginnings of the book itself.... There are also some "personal matters" that honestly came up this morning, mainly to do with all of this mess with my Mother, and at this moment I am totally at my wits end, I have no clue where to go or what to do, other than leave her alone, and allow her to figure out "all is NOT RIGHT in her world".... she really hurt me earlier... calls me well before she is usually even out of bed, wanting to know "why I had not called or been by"...
well for one I was there two days in a row, just yesterday for one, and besides she is usually never even out of bed until after noon time... anyway, she asked me what I was doing, and then she told me I was a "blabber mouth", and I should NOT be telling my own kids what is going on... well I tried to tell her the kids are NOT stupid, and they "hear and see" and then she says they are never here nor never call so how do they know anything? So, I hung up... well I called back about 30 minutes later, and began to tell her to NEVER call me a "blabber mouth" again... that it for one hurt my feelings, and for two was NOT the truth, so then she began to tell me that losing her credit cards, not being able to work her stove, put her car in gear, not pay a bill correctly, not take her meds correctly, not know why the alarm clock blinked etc "meant nothing" and why do I even "care"... it is in the past...
and when I said MOM jut yesterday I WENT TO GET YOUR MEDS AND GO TO THE STORE BECAUSE YOU DID NOT FEEL LIKE IT... so it not in the PAST it is right now... and she made some snide remark oh well, when we get there or if we do, we will handle it then... well WE ARE THERE! And she cannot continue to live alone, and if I tell the doctors about the car incident and and a couple of other things, they will tell her she cannot drive NOT live alone! As I told her and "building you a room" takes more than a few days.... she began to tell me I was full of crap, and nothing was wrong with her.... so I hung up with Okay, I will not "bother" you again, I am NOT calling, I will NOT come over there, and "if" you need me, then call, otherwise, I refuse to be hurt and used like a doormat and then laughed at when I told her that her calling me a "blabber mouth" hurt my feelings... and she said "she never even called me this morning".....
so, I have LOTS of things I want to do and get done, and I honestly right now am so totally sick and tired of this crap.... that she may wind up in a nursing home, if she does not want to listen to me.... I don't know what else to do.... but I need to get some rest myself, and do some thinking about several things... so if you do not see me here much, I am okay, just "out of touch" for a few days....
There are some things I really need to get to working on as far as this new newspaper I am staring. I can customize is a great deal and it could really help me with my blog, as well as with my books , and my next book...plus lots of my advocacy work...getting information out there that would really benefit many people and help make what I want to happen possible ( I Hope)...I have also had some new ideas for my 3rd book unfold in my mind over this past couple of weeks, and although I jotted some of it down, I would like to start writing on it, in the beginnings of the book itself.... There are also some "personal matters" that honestly came up this morning, mainly to do with all of this mess with my Mother, and at this moment I am totally at my wits end, I have no clue where to go or what to do, other than leave her alone, and allow her to figure out "all is NOT RIGHT in her world".... she really hurt me earlier... calls me well before she is usually even out of bed, wanting to know "why I had not called or been by"...
well for one I was there two days in a row, just yesterday for one, and besides she is usually never even out of bed until after noon time... anyway, she asked me what I was doing, and then she told me I was a "blabber mouth", and I should NOT be telling my own kids what is going on... well I tried to tell her the kids are NOT stupid, and they "hear and see" and then she says they are never here nor never call so how do they know anything? So, I hung up... well I called back about 30 minutes later, and began to tell her to NEVER call me a "blabber mouth" again... that it for one hurt my feelings, and for two was NOT the truth, so then she began to tell me that losing her credit cards, not being able to work her stove, put her car in gear, not pay a bill correctly, not take her meds correctly, not know why the alarm clock blinked etc "meant nothing" and why do I even "care"... it is in the past...
and when I said MOM jut yesterday I WENT TO GET YOUR MEDS AND GO TO THE STORE BECAUSE YOU DID NOT FEEL LIKE IT... so it not in the PAST it is right now... and she made some snide remark oh well, when we get there or if we do, we will handle it then... well WE ARE THERE! And she cannot continue to live alone, and if I tell the doctors about the car incident and and a couple of other things, they will tell her she cannot drive NOT live alone! As I told her and "building you a room" takes more than a few days.... she began to tell me I was full of crap, and nothing was wrong with her.... so I hung up with Okay, I will not "bother" you again, I am NOT calling, I will NOT come over there, and "if" you need me, then call, otherwise, I refuse to be hurt and used like a doormat and then laughed at when I told her that her calling me a "blabber mouth" hurt my feelings... and she said "she never even called me this morning".....
so, I have LOTS of things I want to do and get done, and I honestly right now am so totally sick and tired of this crap.... that she may wind up in a nursing home, if she does not want to listen to me.... I don't know what else to do.... but I need to get some rest myself, and do some thinking about several things... so if you do not see me here much, I am okay, just "out of touch" for a few days....
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
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
Thursday, May 7, 2015
Taking A Moment Away from the Griping and Fussing over illness and pain to say " Happy Mother's Day" to All!
Before I get back to my griping, fussing and being "sick and tired" of feeling "sick and tired" I thought I would stop and take "inventory" of Mother's Day, coming up on Sunday. It used to be a "tradition" of ours, to take my Mom, and the three of us go to one of the casino's. The last several years, we usually go to Oklahoma, to Winstar, because it all has you could ever want or need, plus it is quite a bit closer than going to Louisiana. :)
After my husbands accident last year in March, that kind of put a damper on things. In fact he was still in the hospital at Mother's Day last year, and Mom and I went together, just the two of us, and had a wonderful time. We usually have a blast together, whether it be at a Casino, or just a day away for a "window shopping trip".... so not being able for the 3 of us to go right now, kind of changes the scheme of things. Yet, life is like that. We never know when within a breath's space our entire lives can be changed forevermore.
This year is going to be a real challenge for me. Now I face yet another round of tests on my lumbar/sacral spine. They just called to sit up a "discography" to be done in Dallas at Medical City. I chose to wait until the last part of the month, on the 27th, which now I am wondering why I decided to wait that long. Today, I feel like I've been ran over by a train, and then backed over and ran over once more. My back had been feeling "somewhat" better. And of course between our freaky weather, and all I've been doing, my back hurts like hell right now. But, so does the rest of me. So, I figure I've either came down with a slight "bug", or it is a "flare" trying to come on... fatigue, pain, lethargic, nauseated, my head feels like it could explode and our humidity has to be at 100%!!!!
Anyway, I said no "griping" on this post :) So, again below is what I posted to all of the Mom's on Facebook. Thus, here it is for all of you also.
Enjoy your kids!!! They grow up much to quickly. Just turn around once, blink your eyes, and within a breaths space, they are grown, often married, with family's of their own, jobs, and all that life entails for them. So, everyone with little tot's please enjoy every moment of the funny, silly, and sometimes messy things they do... for it won't be long, they will be out of high school, out of college and out into the world all their own....
And you shall be wondering where the time went....
I wanted to post a "shout out" there to ALL MOMS! Mothers Day is here on Sunday, and before I get too wrapped up in things I want to make sure to let every Mom, Step-Mom, and so on know just how incredible you are. The many nights we've stayed up with them when they were little, or ill, to the days of school, lunches and parties. From the PTA meetings, cupcakes for the class, all of the special birthday parties, holidays and decorations we put out for our kids to enjoy. From the days of worry over them as they grow a bit older, and pray "we've raised them right... those times we think "they didn't come with an instruction manual, and that pain we endured when they were born, and how quickly it melted away as soon as we heard that first cry. They always remain "Our kids" no matter if they are 3 yrs old or 35 years old... kids still are kids to parents... I am so proud of my two "kids"... although both grown, my son 35 soon to be 36 (I think) and my daughter 31soon to be 32 (I think);) and her awesome husband and my 3 great and wonderful grand kids. I so wished we lived closer, we just don't get to see one another as we would like. Yet, life is life, and sometimes things are not exactly as we would like them to be. So, thank goodness for FB, so she can keep me up to date, with pictures of all of their events, and I have got to watch them "grow up" via Facebook! :):) For that I am elated. I wish each and every Mom out there an incredible Mother's Day! Whatever and wherever you get to go, or stay home, visit, rest, and however you celebrate, may you be well, free from pain, if only for that day, and know in your heart, you are a fantastic Mom!!!!
After my husbands accident last year in March, that kind of put a damper on things. In fact he was still in the hospital at Mother's Day last year, and Mom and I went together, just the two of us, and had a wonderful time. We usually have a blast together, whether it be at a Casino, or just a day away for a "window shopping trip".... so not being able for the 3 of us to go right now, kind of changes the scheme of things. Yet, life is like that. We never know when within a breath's space our entire lives can be changed forevermore.
This year is going to be a real challenge for me. Now I face yet another round of tests on my lumbar/sacral spine. They just called to sit up a "discography" to be done in Dallas at Medical City. I chose to wait until the last part of the month, on the 27th, which now I am wondering why I decided to wait that long. Today, I feel like I've been ran over by a train, and then backed over and ran over once more. My back had been feeling "somewhat" better. And of course between our freaky weather, and all I've been doing, my back hurts like hell right now. But, so does the rest of me. So, I figure I've either came down with a slight "bug", or it is a "flare" trying to come on... fatigue, pain, lethargic, nauseated, my head feels like it could explode and our humidity has to be at 100%!!!!
Anyway, I said no "griping" on this post :) So, again below is what I posted to all of the Mom's on Facebook. Thus, here it is for all of you also.
Enjoy your kids!!! They grow up much to quickly. Just turn around once, blink your eyes, and within a breaths space, they are grown, often married, with family's of their own, jobs, and all that life entails for them. So, everyone with little tot's please enjoy every moment of the funny, silly, and sometimes messy things they do... for it won't be long, they will be out of high school, out of college and out into the world all their own....
And you shall be wondering where the time went....
With Love, Honor and Wishing All Mom's out there a very Happy Mother's Day!
I wanted to post a "shout out" there to ALL MOMS! Mothers Day is here on Sunday, and before I get too wrapped up in things I want to make sure to let every Mom, Step-Mom, and so on know just how incredible you are. The many nights we've stayed up with them when they were little, or ill, to the days of school, lunches and parties. From the PTA meetings, cupcakes for the class, all of the special birthday parties, holidays and decorations we put out for our kids to enjoy. From the days of worry over them as they grow a bit older, and pray "we've raised them right... those times we think "they didn't come with an instruction manual, and that pain we endured when they were born, and how quickly it melted away as soon as we heard that first cry. They always remain "Our kids" no matter if they are 3 yrs old or 35 years old... kids still are kids to parents... I am so proud of my two "kids"... although both grown, my son 35 soon to be 36 (I think) and my daughter 31soon to be 32 (I think);) and her awesome husband and my 3 great and wonderful grand kids. I so wished we lived closer, we just don't get to see one another as we would like. Yet, life is life, and sometimes things are not exactly as we would like them to be. So, thank goodness for FB, so she can keep me up to date, with pictures of all of their events, and I have got to watch them "grow up" via Facebook! :):) For that I am elated. I wish each and every Mom out there an incredible Mother's Day! Whatever and wherever you get to go, or stay home, visit, rest, and however you celebrate, may you be well, free from pain, if only for that day, and know in your heart, you are a fantastic Mom!!!!
Wednesday, March 4, 2015
YOUR VOICE on Capitol Hill at the "Virtual Summit" can be heard! YOU WILL BE HEARD! E-Advocacy and more for the Arthritis Foundation
Okay Guys and Gals!!! I am asking for YOUR Participation in this
EXTREMELY IMPORTANT situation. As most of you probably know I have made
"Platinum Ambassador" for the Arthritis Foundation for 2014-15. So, I am
headed for Washington D.C. March 22, through March 24-25th... for the
Annual "Summit on the Hill" by the AF. We will be going personally to
Capitol Hill to both the Senate and House of Representatives, to meet
with as many of them as we can. If we don't get to meet personally with
them, we still usually meet with their "health legislative" assistants,
and other staff that can help to deliver our information and message. It
is IMPERATIVE THOUGH that ALL OF YOU that can't be there, really and
truly KNOW YOUR VOICE COUNTS!!! I know many of us have become
disenchanted with "Congress" - our Senators and Representatives for many
reasons. Yet, I know PERSONALLY FOR a FACT that YOUR VOICE DOES
MATTER!!! I have seen the results of what letters, phone calls,
messages, and meetings can do for all of us in the matter of Arthritis,
whether osteoarthritis, RA, Juvenile RA, Still's Disease PLUS ALL of our
other "Autoimmune" and other health issues. BUT, WE need YOU to also
raise your voice and be heard. We will be DELIVERING YOUR LETTERS
PERSONALLY to the Senators and Representatives that you can follow from
instructions below, and fill in your personal parts, tell your story
also, or however you want to personalize it. The Arthritis Foundation
NEEDS "Virtual SUMMIT people" and that is YOU. Even if you are going to
DC, still please use this letter to be given to your Senators, and
Representatives. ONE VOICE can MOVE MOUNTAINS! I have witnessed it, and
continue to truly believe we do matter. BUT, if you DON'T contact them,
then they do not know your situation and how YOU feel. So, I am posting
here, on my blog, on my Pinterest, on my Instagram, on Twitter,
everywhere I can about how to be a part of this critical movement! This
is for ALL of us, with these horrible illnesses, that need help with
getting good physicians, the MEDICATIONS WE NEED and making them
AFFORDABLE FOR ALL! This is about those in our nation, many of our Armed
Forces Come home with arthritis problems or develop them..... and many
of our youngest of this nation are also patients, with Juvenile
Arthritis. I want to urge each of you to take a bit of time and send
your letters. I am including all of the instructions in an attachment
and at the URL that is provided. If you have questions feel free to ask
me, either through Facebook, or through message or email me. If you
would like me to help or if you have a message you want me to take your
letters with me, and I will make sure they get delivered.
Here is your link to sign on to be an "E-Advocate" for the Arthritis Foundation. This gives you a voice via emails and so forth so you can be heard at the National Congressional Level. It is not time consuming, you don't even have to leave the house, but this is a way to be able to speak up and be heard by your Congressional Leaders that you voted in. Let them know how you feel, and what you feel is good for yourself and the nation when it comes to Arthritis, RA, Osteoarthritis, and ALL of the other diseases that are often in tandum with arthritic illnesses. It takes a few moments to sign up and be heard for the rest of your life by those who can help to make things better in the realms of your health.
http://www.arthritis.org/ad…/sign-up-to-be-an-e-advocate.php
Then
this is how you can "attend" the Annual Summit on the Hill as a member
of the "Virtual Summit"... this link provides you with a sample letter
that you can also personalize, add your picture, and tell your story
about your health issues when it comes to arthritis, whether a patient,
caretaker, family member, or just want to be a "voice" to help others.
http://www.arthritis.org/.../virtual-summit/letters.php
You can download the "letter" from that link, and all of the instructions are there so you can send it back via email to those that will be taking YOUR letters directly to Congress. WE are giving a VOICE to YOU, even if you can't attend... as I said, if you have questions, need help, or however I can assist you, feel free to email, message me, or post and I will be more than happy to help out in any way I can.
ALSO!!! SOCIAL MEDIA is a HUGE way to get your messages across. MANY of our Congressional Members have Facebook pages, Twitter, Instagrams, and so forth. That is another way you can also make contact with them, so be sure to also look that up. I have both of my Senators and my Representatives Facebook pages, and I've sent Tweets to them and emails also from their websites. Sign up for their newsletters. That is a great way to find out how to contact them also.
Here you go!!! "Proof" is in the "pudding"!!! this study is compelling to show that a few "Tweets" or other type of Social Media use can capture your Leaders Attention on a Subject ...
http://connectivity.cqrollcall.com/just-a-handful-of.../
Tuesday, November 4, 2014
Nominated for Several WEGO Awards!!!! for 2014
I am so elated!!! I've gotten several nominations for the WEGO Annual Health Awards and just got my "Tweets" and Emails stating so, I am just blown away by those who believe in my hearts advocacy, volunteering, activist and Ambassador work!!!
Here is my profile information on WEGO:
https://awards.wegohealth.com/nominees/1998
Here are the nominations I have received so far:
Talk about feeling totally honored!!!!
Here is my profile information on WEGO:
https://awards.wegohealth.com/nominees/1998
Here are the nominations I have received so far:
Talk about feeling totally honored!!!!
Tuesday, July 22, 2014
3rd Time A Charm!! -
It is still not exactly as I want it BUT you can now "comment" right from the front page, where it is "no comments" just click there and a new window where you can comment will open up. Comment there and any other comments will also be in that window. I may still go back to having them right under the post. I feel people are more inclined to "leave a comment", and read any that are there.
I am hoping this does help clear some of the mess up. Google really did a number on Blogger when they made the "Circles" and the Google plus 1, etc. Not that they are a bad thing, but it did for some of us cause a nightmare with our blogs.
I am also seeing a "drop" in people coming in. I realize that is my own fault, with everyone as crazy as it had been. For about 6 weeks, about 4 days of each one has been spent either at therapy, at a doctors office, at the dentist, or something to do with one of us and medical mess. I am hoping that is beginning to calm down a bit. Jim "completes" out of the home therapy tomorrow... so that takes care of 2 trips each week to Waxahachie. It seems like not that much, but it just wrecks the afternoon and evening. By the time you get out, get out of the traffic and get home to straighten out dogs, house, and put things away, it is a hurried dinner of whatever and then all we want to do is sit down and freaking relax. I see my Rheumy next week! Thank Goodness... and I will post at the bottom of this a link to my FB page where I put one pic up of my new beautiful teeth! ;) I will get some when I am dressed and have makeup on next week. But for now my mouth is still swollen, so my face in places is a bit puffy especially my top lip and around my nose.... More very SOON, I promise... I have LOTS of exciting new stuff... some I can tell... others, well it will be awhile, but I still have eons of stuff to catch you up on.... Hugs, Rhia
I FINALLY figured out what the issue was on the "comments" part of my blog. That is where you can put your comments right under my posts. It is ready to go now :) Let me know if you have any problems!
Rhia
I am still having problems on the "main page", but if you go to the "page" of that particular post, then you will see where you can "comment"/. click that and a window will pop open where you can post comments. I know blogger is making a bunch of changes, which has screwed up a lot of what I thought was working. That is why I have thought about going to Word Press. But, then that means a learning curve to figure out Word Press also.... always something... If this is still not making sense, send me an email at rhia@ravishingrhia.com or redstangblonde@yahoo.com and I will explain fuller.... I want you all to be able to comment! That is my reason for this in part, is so I can HEAR FROM all of YOU!
Saturday, November 23, 2013
Living Life In An AutoImmune Illness "Zone"....
Life as we have lived it... and now Life as WE that deal with AutoImmune illnesses Live it Differently - Yet Happily!
As some of you know, I live in TX, just below the Dallas area. WE are having our first blast of very COLD weather today and over the next few days. We are now under a Winter Storm Advisory, with possibly sleet, ice, and some snow. Usually we get more ice than the fun stuff, snow. As I was talking about on FB, how I can "predict" the weather almost better than the forecasters can, the memories came pouring back to me of when I was able to go snow skiing. For years, before I had all of the illnesses happen, we went snow skiing, every year the week of my birthday. It was our annual vacation, that I saved up for as soon as I got home from the one we were on. I put money back in a "Christmas savings" fund every week for the entire year. Part we used for Santa and Christmas and the other was for our trip. Those are still some incredible memories for me. That was a time when I was on those skis, I felt completely "FREE". All of the snow and the forests, and just a quiet feeling of peace always came over me as I started down the mountain. Don't get me wrong... I took some hellacious spills. We always made videos so we could laugh about each other and our "Oh Crap" falls. You knew when one of us was going to take a very funny fall, because "Oh Crap" was all you heard! ;) Anyway, below is the post from Face Book that I wanted to share with everyone here.
This may not sound like a "post" about autoimmune arthritic illnesses, yet it has all to do with then for me. Now I can no longer snow ski. In fact there are many things that have been crossed off my list, because I no longer do them. Mowing my lawn, and tilling the garden. Going to the lake and being in the sun. Making plans like a trip for something to do months away. I never know even a week before something is planned if I am going to be able to go or not. There are times I feel so bad that I cancel doctors appointments. I am just too fatigued to go, especially if the appointment are in Dallas.
This comes to the place of why I can't do things any longer. It is certainly not age. There are MANY people I saw on those slopes as Wolf Creek Pass that were in their 70's. I am sure some of them lived close, so they have much more practice. But it is just the point "age" does not necessarily cause someone to stop doing things they enjoy doing. As you are reading this, I am sure you are thinking back to the times that are special to you also. Vacations, visiting family or friends, gardening, riding a bike, just a number of things that so many love to do, and do it. Age is not the factor at all.
But, having an illness that can even strike when you are very young, in your teens, can stop you from doing many things that you loved to do, or would love to do. Is it a difficult thing to handle? You bet it is. I know I speak for not just myself but ALL of us with an Autoimmune Arthritic Illness, or any type of Autoimmune illness and/or Chronic Pain/Chronic Illnesses such as FM and CFS that also take away so many things in life that either we once took for granted; or at least never gave a thought that we would not be able to do them "the next time". Yet, it can strike anyone. Even though "women" are probably 80 more times or more to come down with one of these illnesses, men are also victims of these diseases. So, they do not discriminate when it comes to gender, age, or race. I have read articles and I am sure to do those studies that African-American people are more prone to these illnesses such as Lupus than other genders. I am sure researchers have been studying that one a great deal to find out why a nationality would make a difference. Also, why so many more women are much more likely to get the disease than men.
My point to this is one, I did have some great memories flow through my mind when it comes to snowy weather. I also have these "blasting" memories of how much these horrid diseases take away from our lives. From changing relationships, families, jobs, and everything about your life basically, all of us can't help but be angry at times about it. Even though like myself, we come to accept it for the most part, I still feel at times like a piece of me has died... has left me... and changed me forevermore.
WE do learn to deal with it. I have in most ways. You find ways to compensate for what an autoimmune illness takes away. You learn new hobbies, or a different way to do them. You discover another way in a relationship to be close, and educate your spouse, and your family so they will truly understand the "why" of the things you can't do.
As I often talk about my life, a flowing river, where there are bends, turns, white rushing waters, and then the bridges I flow under. The climb to the top of life's mountain. I scratch, crawl, and inch my way up, and sometimes I slide back down, as the rocks and stones may scar me, I still look up and know that is where I am supposed to be.
For the rest of the year, and into the next year, I hope each of you who suffer and are inflicted with these still misunderstood life altering illnesses, such as RA, :Lupus, Sjogren's, MS, Still's disease, MCTD, UCTD, JA, pernicious anemia and the 100 other AI diseases out there, can look UP and reach up to see that you also can stand atop your own "life"s mountain".... and reach up to the stars... and feel whole again... even if that means you must "change" how you enjoy life in a new way!!!!
This below is a Face Book post from this morning... I wanted to say it also along with the above writing....
I imagine you are probably getting it up there worse than we are. they have changed the forecast so many times the past week, I was not sure what it was going to do. But my "bones" always let me know... My thumbs and fingers have been extremely bad this past week or so. Not just pain... now it is more of them not wanting to bend, I have like almost "zero" flexibility. I can't hold onto things That has been going on for a while now. That is partially why I suspected MS along with all of the other ailments. I have just lost so much grip and strength in my hands, arms, fingers, and I notice it lately even in my legs. IF I am up for a long while at the house doing things, or I go to "Wally World" and walk for a long while in there, my legs feel like "rubber bands" of jello ... I feel as if I am going to just collapse. I guess partially illnesses, partially all of the surgeries, and then I guess I have to account for getter older!!! Even though that is NT one I really want to ADMIT! Kind of like my memory... if I forget, or can't remember, I blame it on the brain fog... better than saying maybe I have dementia... You stay warm up there and out of this weather... and of course avoid all of the "no driving fools" that try to drive in ice. No way most Texans from in this part can drive on ice. HAHAH Many of them can't drive on dry pavement, much less wet or icy!!! Speaking about "black ice" on the roads. One year we were coming home from snow skiing in Pagosa Springs, CO... at Wolf Creek Pass (some great memories of snow skiing for me)... we left Santa Fe... and already knew it was a possibility the roads could be bad. We got to the main highway from Santa Fe (I-40) to head to Amarillo state and all of a sudden we felt the van just slip a little... it was a solid sheet of thin ice on the roads and of course you can't see it. Anyway, we slowed down to a crawl. In fact we happened to have borrowed a friends van so we sure as heck did not want to be in a wreck, much less a friend's vehicle.. suddenly here comes an 18 wheeler SIDEWAYS beside us just flying past. He jackknifed it into the medium and then here comes several cars, and they were not expecting it. Each one that went around us were in the ditch when we got up ahead. In fact, we drove on to Amarillo, but it took us something like 12 HOURS to get there. We called 911 and reported the accidents, but the entire way there were cars and 18-wheeler in the ditches. It was nuts. Believe me I felt that the Lord was helping to drive that van for sure.
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