Showing posts with label advocacy. Show all posts
Showing posts with label advocacy. Show all posts

Wednesday, January 10, 2018

Hoping a better 2018! Lupus flare, RA flare, Flu virus, Chronic Pain severity, epidemic, wishing for a better year than since 2014 wanting to get back to writing, blogging and advocacy work

Putting "hopefully" my writing, posting, advocacy and writing areas of my life back in the forefront. The past two years, really more like since late 2014, seem to have been a nightmare. 

I've had good things happen, but losing two of my fur-babies, my Mom getting ill so quickly and passing away in 6 months, losing my Mom's "baby" sister, losing my marriage and not sure why yet, having a pain pump replaced, having a fractured hip and spending Christmas 2016 in the hospital and inpatient rehab, the a very complicated neck surgery in April 2017 that took me months to just get out of a hard collar with, and now my Lupus and RA are really giving me heck... much more but those are a few of the "highlights" that really put my several years previously in a spot where I felt I would NEVER be able to get back to my advocacy, activism, writing, blogging, posting... and the things I want and love to do... And I am still going through stuff health wise, my neck is really hurting again, and has been, but my shoulder as I say below, that has already had a complicated replacement began acting up, right after the last neck surgery. We have changed RA medications trying to get the RA flares under control, and my lower back and legs really beginning to bother me again...

I am not sure if the ridiculous weather we are having is a huge factor, but generally the WEATHER has always had a huge impact on me, when it comes to chronic pain, and migraines.... way before I could ever get a physician to "agree" with me, I KNEW the weather effected my severe migraines when they were so bad for over 20 years of my early life. 

Now all doctors and health professionals agree that the weather, temperature, humidity, erratic weather, cold one day, hot the next, all of those things and the barametric pressure have sometimes severe effects on many illnesses, especially chronic pain...

I ASK that each of you the "follow me" here, on my daily newspaper, through Facebook, Twitter or wherever to keep me in your thoughts and prayers as the year progresses. I REALLY want to get back to those things such as my writing and blogging... more on the advocacy side, but even sitting here at the computer puts me in such pain at times, there are days it hurts to sit, stand, walk, lie, no matter what I do, it is severe on some days, and here lately MORE days than not....

BELOW is a POST from my Facebook page, where I had been commenting to a friend of mine who is going though some frightening issues with her liver, and her Diabetes. So, as I posted this, I wanted to "add" it here also... my numbers honestly here on my blog have fallen so much, and I know the holidays effects that, but also me not able to post as much, put up as much relevant information as I usually do... I desperately need to update the look and feel... I know it's getting outdated, and it is a matter of having the time to do those things, and those are what I really want to be able to work on....

I APPRECIATE those like yourself, that give back the feeling that "I matter"... I try my best to let others know I do appreciate each one of you that take time to even give a "thumbs up" I realize not all of us have time, or feel like Posting, but I always know someone "cares" by just a heart, a thumbs up, or a "face".... you too I realize have been through so much. I have to "say something" about a "comment" I read the other day. Some one made a comment that Facebook is NOT THE PLACE to "post your personal problems"????? WHY would we "want to connect here at all" if we were not looking for others either like ourselves that "need that extra push up" every once in a while, or to "see" we are NOT alone in this come and when I "post" personal issues, which health is very personal I think, 

I am NOT looking for an answer or someone to totally agree with me, or what, it is MY way, like my blogging and writing (partially)... the social media is a way to connect for many reasons, but since I have "no really close family or friends physically that I can "see" ) my son and daughter are about the only "close family" I have left, and my daughter is 8 hours away and we talk probably at least 3 or 4 times a week, but she cannot just "drop her kids, family and husband" to run 8 hours up here, and although my son lives close by, he has his own things also, he has been fighting with "FM" now for a long while, so he is trying to re-educate himself, by some short classes, where he can do certain jobs, that the ones he used to do, due to the FM he no longer can do, lots of very hard physical labor... even though he is 37, age as many of us know with some of these horrid illnesses, syndromes, chronic pain issues and so forth, AGE has nothing to do with it.... so he sends me messages, and if I NEED him, he could be with me quickly, and we keep up with each other, 

BUT he also knows ME, I really 'don't want" the feeling that I have to have someone doing everything for me. I LIKE doing all that I CAN DO myself... and it is hard for me to even ask for help, because all the years I did everything, from hanging ceiling fans, to painting, any kind of home improvement just about, the lawn, and so many things I've loved to do, I KNOW that even since my cervical neck surgery last April, I have "overdone" some stuff. I PRAY my neck is not messed up again, or my right shoulder, that ever since the neck surgery, it is the RIGHT ONE that has already been totally replaced by a "reverse total shoulder replacement" about 6 years ago, I think, but it has given me hell ever since the last neck surgery... of course I realize 'some things" I had been doing I've had to "stop" and either let my son do it, or my neighbors help some, or I just let it go, knowing it can wait, other than an emergency thing at the house, some things that I just could NOT stand to "let go" I've had to and I am STILL learning to "let them go"... but being alone with the pups now, I do as many things as I feel like, or that I can do, if possible.... yet trying to learn to say "no" I can't, or sit down and say I just hurt too badly today, etc... those are very hard things for many of us to do... not in our "genetic makeup" 

Friday, April 28, 2017

LUPUS Awareness MONTH May 2017!!!! LOTS you can do to get message through to Congress, to Walk, Advocacy from Home and Much More!

Use the Lupus Research Alliance Legislative Action Center to tell legislators why we need greater funding for scientific research at the National Institutes for Health and allocations to continue a dedicated lupus research program at the Department of Defense. Equally important is to convey why we must make sure that any new healthcare policy allows all people with this challenging disease to get the critical medical care they need. And to be most effective, share your own story – share how lupus affects you!



Tuesday, November 29, 2016

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


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

Wednesday, November 16, 2016

WEGO Health Blog Challenge for November 2016 Day - 16 - What kind of suggestions I may give to others who are starting out as "Activists - Advocates - Volunteers

" What Kind of Advice I May have for those who are starting out in the Advocate, Activist Role and are "Rookies" wanting to know a few tips."

Wow, that is a very great question! I wished I had "asked" more questions when I began my ongoing pledge, and began down the road of activism, advocacy and being a volunteer when it comes to just about anything involved in the health field. When it is a chronic health issue and/or chronic pain, there are SO MANY websites, blogs, non-profits, articles and more that can begin you on your journey.

Yet, here are a few things I've learned and "taught myself" along the way.

Try to pick "one or two" illnesses, health needs, healthcare related issues, such as insurance, medications, physicians, and so forth. I am the type of person who wants to "do it all", "be in it all", help everyone, be there to assist everyone I can. I found out very quickly, especially if you, yourself Are "Chronically Ill", or are a Caretaker of someone ill, that you can definitely be in way "over your head" and in burn out quickly if you try and take on too much at once. So, try a few different avenues, such as being an advocate for a certain group, such as Diabetes, Autoimmune Illnesses (RA, Lupus, Sjogren's and so forth), heart diseases in women, children's health, becoming a blogger, posting on Social Media, on Facebook, Twitter, Pinterest and such. This may help you find your "niche'".

You may prefer to do "drives" such as the "Jingle Bell Run" for the Arthritis foundation, in many major cities across the nation, or one of the other drives, many do walks and runs, women's breast cancer, heart problems, other cancer's. If you are good with people, then you may find helping to raise awareness AND raise MONEY for one of them, could be what you feel good at.

Write! Tell your story! If you are chronically ill, you maybe already on a Facebook group, or one of the Foundations's groups, where you can tell your own story, which often helps to inspire others.

That is the ONE thing that I found out of everything I do in my years of activism, Ambassadorship and Advocacy, is TELLING MY PERSONAL STORY, either on a social media site, or possibly at a group in your town or city, or even in your newspaper. Get your own experiences out there, Those help others to see they are not alone. They have people that DO totally understand, and can support them.

Often now many of the non-profits go to a "Summit" Annually making a trip to Washington DC, in order to tell their stories to CONGRESS! We need Congress on our side for helping with medications getting passed possibly, or funding to get a new medication researched, or raising awareness of just how many people are ill, not working, and are so ill daily they are not able to cope with a job, and YOU are the ones that NEED TO again TELL YOUR STORIES TO CONGRESS!!! Those stories are exactly how we get the government, whether, local, state wide, or National, and make them understand how crucial the help and role the governments play in assisting non-profits, can possibly help others to feel well enough to work, to someday find a cure, or even STOP THE ILLNESSES, BEFORE THEY EVER HAPPEN!

So, above are the few things I've learned about getting involved, remembering you are not a "super-activist" so you can't do it all at once, then find your niche, and off you go in search of all of the help and awareness you can get in the activism direction your heart desires.



Monday, November 7, 2016

WEGO Health Bloggers/Writer's Challenge 2016 - Day 7 - How I chose to start my Advocacy Work & How I felt when I made that decision

Day 7 - WEGO HEALTH Blogger/Writer's Challenge 2016

"How I Chose to become an "Advocate" & How I felt about that decision"

I had really already been a "voice" in many ways well before I was diagnosed with RA, Lupus and Sjogren's. Before those came into play, I suffered with Migraine's from the time I was 17 years old.

I was also wanting to be in the medical field almost all my life in some way. Early in life, my thoughts were on becoming a nurse. As time went by, I married, had my son, then a few years later, remarried, and had my daughter, the idea of going to school full time in order to become a nurse was almost impossible. I was mainly the "bread winner" of my home, and my paycheck really needed to be there in order to pay for the house, car, and for all that my children needed as they got older. 

I had a chance when the kids were around early teen years to go to Nursing School full time and it be completely paid for by the hospital I was working at, in the Business Office. I did pass #1 on the Exam to get in, but then it was the "money" issues, of me having my paycheck completely cut out for at least two years, that made me have to decline going to college full time. Although I took classes at night and got my Associate Degree in more of a business light, the medical field has always been in my "blood". 

I seemed to "absorb" all things "medical" in nature. After being formally "diagnosed" first with MCTD, then soon that changed into Lupus, RA, DDD, DJD, Raynaud's "Hyper-joint mobility", Sjogren's and that list grew on, I then "knew" first of all, the Heart Attack I had at 40 years old, had to have something to do with the RA and Lupus. Although when I was 40, I was the "picture of health" ate properly, exercised daily, watched every type of food I ate, was the exact weight I should be, yes, I had a heart attack. At the time the doctors said the huge amount of stress I was under had caused it, which I am sure played a role, but I was SURE back then, that my Migraines, joints issues, that had already caused me to have several major joint surgeries, plus other things in my health that just did not add up, yet not one doctor took me "seriously" for another 10 years or MORE, before I finally got the diagnosis of "autoimmune disorders". Thus at 50, I suffered another heart attack. 

Now, back to my advocacy work. I was already writing a book about my "health issues". The doctors that had been great, and those that treated me like I was some "air-headed, over anxious blonde" because as we have come to find out "Chronic Pain and Illness can often be UNSEEN by others in our lives - Invisible to those around us, even physicians". 

Back then women were also kind of considered "off the wall", depressed, anxious, stressed and that ALL of their "illnesses" were basically psychosomatic, rather than being looked upon as most men were. A man walks into the ER or doctor's office complaining and they are taken seriously. Back then and still it happens, woman can do the same, and we get the answer YOU need a "shrink"... this has changed for the better and does not happen as much, but back then most women were just "crazy", when they complained, especially of pain. 

So, when I became interested in finding out how I could get MY voice heard, other than my writing, I turned to Facebook to do some research. I also began doing searches on the different illnesses, diseases and syndromes, and came to find out there was an entire realm of "advocacy" places, where the PATIENT'S VOICE was CRUCIAL!

No longer was it just the professionals that were hailed upon for answers, but us, those that suffered with these diseases had a voice in groups, by jointing some of the organizations, and even going right up to Washington DC (which I had long said I wanted to stand at the White House Steps and TELL MY STORY) ... and I came to find out, that is exactly what patients were doing! That the Arthritis Foundation, WEGO Health, the Lupus Foundation, the IFAA, and so many other of the non-profits were "enlisting" us, everyday, regular patients to tell our stories, and move those that could help us by money for research, by giving people access to clinical trials, helping to get our voices to the experts, thus that is what I did.

I dove in head first, to a couple of organizations, and I was excited, thrilled, terrified, star-struck, and scared all at the same time! When I was able to attend the Arthritis Foundation's "Capitol Hill's Annual Summit" and DID GET TO tell my story to some of the Congressional men and women, I truly felt that I had accomplished a greatness. That is when I also wanted to tell everyone else, that they TOO, right from their home and computer, can also make their voices heard. They are important, and crucial to making the diseases stand out, where we can get answers, get proper diagnosis', get the care, medications and specialists we need in order to survive all of the horrid illnesses, we've had to endure for much too long.


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.....

Thursday, October 22, 2015

Where do you turn when there is nowhere to turn you feel like???

I just cannot begin to even tell what all has went on with me over the past 10 days, but this has been one of the worst weeks in my life, and it is like I see no end in sight...

I had a "plumbing" issue and thought I had taken care of it... well then I go to check my "clean out" to make sure, and I still had some standing water, from my washer in it, and I knew the weather is going to get back, and with Winter coming on, I certainly did not need a plumbing problem... it sucks because I just had all new pipes put i=under the house, and then even replaced a large section of our outside sewer line a couple of years back. So, it is all almost new, and even the cleanout itself we added a new one in, in order to hopefully not run into bad issues again....

In fact one of the guys from out city water dept. told me tree roots are really bad about getting into the pipes as they age... they can somehow get into them, and he told me to get a cheap container of bleach, and pour down that clean out once every month or so, and that would stop the tree roots from getting so bad... and it has slipped my mind, but once I had poured some of that in, and also went and got some liquid cleaner and poured down it, I thought I had remedied it... so Monday, he comes out, runs the auger through it, said he cleaned it out over 90 feet, and the only thing he found was possibly some ball of cotton or something, and it was okay... well that took 5 minutes and 130.00 later out of my pocket to be fixed....

Okay, then my Mom and I have been for followups for our PCP..he keeps an eye on her, blood pressure, and she has had some issues with UTI's and he watches me every 3 months due to the Lupus.... of course I have just went through the abscess on my left thigh, and it is still not completely well, and I still have the hard lump on the other thigh, but it just has not gotten larger... but it is there and should not be, and if I can ever get the other leg well, I feel it needs to come out and be biopsied due to the Lupus, RA, Sjogren's and my history of autoimmune stuff, and the medications, it could be a "sarcoma" and/or maybe just a benign lipoma, but still I do need to have the surgeon remove it.... so my blood work comes back and again I am still anemic... which I have been now for a couple of years, enough that I take B-12 injections every month, and should be taking pills daily, but with all of my other meds, my stomach just had a difficult time with so much medication....

So, then I get a call, and my Mom's "kidney function" labs, came back very "low", which means her kidneys for some reason are not ridding the waste as they should... so she went back for more labs yesterday, but I had to find a Nephrologist, and she sees him in early November.

She is still too thin, lost way too much weight, she stays totally confused about her medications, appts, even going to the store, I almost feel she is just not able to go alone right now... whatever we both went through at first about 3 months ago with what seemed to be a "stomach bug".... has worked into neither of us eating very much, nothing tastes right, and there is not much I can even think of that I want to eat... and I have lost weight also, but I wanted to... so for me that was fine... I did not lose like she did...

She is getting very feeble, and if she does not take the Meclazine, like I do daily, even yesterday I could tell she was kind of "off balance" at Wally World... and then to top that off she is complaining about being short of breath, which last time we went through that we found out she has a "leaky valve" in her heart, that lets the blood with oxygen flow backwards, thus not getting enough of it through her body and lungs... but we had fate on our side, and for the time, her cardiologist was able to contain it without open heart surgery, by reducing her fluid intake, and her taking more Lasix, which keeps the flow a bit lower, and it does not flow backwards as much...

But, now once again, and it could be allergies, it could be a touch of COPD, her age, and even her just being so ill for so long... she went through a huge ordeal with her intestines and stomach... and come to find out she had not been taking her GERD medications in months and months I guess. She was on one prescription and somewhere down the line, I guess she lost track, or whatever and she was not taking GARD meds, which was a lot of the stomach issues, and then she tends to be "obsessed" in going to the "bathroom" - and when I began to read on this, the elderly people especially if they are having some dementia issues, or Alzheimer's, they become "obsessed" with their bathroom habits... how much, how many times a day, and on and on - and when we finally thought all of it had been resolved, then she takes a medication the doctor gave her "if" she is constipated.... but if not then she does not need to take it.... but again, she did not understand, so then she began having "accidents"... and I told her Mom, you do not need to take that medication, if you are not having a problem going... it will cause you to have "accidents" if it is not necessary.... anyway, I also have told her over and over, and over again, if she will USE THE FIBER DAILY, she will NOT have issues with being constipated.... and then she will not need that medication..... Once I found out about the "fiber" that is now "clear" and is does not "thicken" up like the first ones that came out, or even the Gummies... I hate Gummires but if I take two of those in the morning and two at night... then I have no problems as far as my stomach, intestinal tract and so forth..,

So, then I wanted to get a new puppy. I've decided that even though it has not been that long since Tazzy passed away, I felt that both Bub's and I both would "feel better" and have something "positive" to look forward to and I just feel that it is a good thing for him and myself.. but I've been through the mill trying to "adopt"... I never had to give out so much information, and have all of these references, and on and on.... I've adopted several pups in my years, and even a few cats.. and of course they wanted to "know" some about me, but not like it is now.... and I "get" they must watch whom they have that adopts these animals, but I've had dogs now most all of my grown life, and cats... and I got Tazzy in Seattle for a Christmas present, and we purchased her, and I also purchased Bub"s as a puppy, so I've never had any issues when it came to adopting or buying a new pup....

So, in beetween trying to find time to go look at a puppy over in Waxahachie, and trying to take Bub's in for his shots, and nails clipped, and then I have about 50 houseplants I needed to "de-critter and bring in before the weather gets bad, and then having to take Mom for all of her stuff, and run errands... and you name it, put my own lawn mower back together, and went and bought a new gas can, since my neighbor never returned mine, and I guess I am too stupid to use the "new ordeal" types of gas holders, because I poured gas on my hands and so forth yesterday evening, just rying to put some in the mower to see if it will crank... I replaced the entire pulley mechanism, the air filter, the oil, and the spark plug, but I have heck trying to start it, because I no longer have enough strength in my arms to pull on it....

Well, I had also spent two weeks cleaning out my storage building and throwing stuff away that had been under the carport... and guess what? Do you think one neighbor would ask me if I needed help???? They even saw me this morning, regrettingly having to toss away some of my beautiful house plants, but ants have taken up around the roots, and the only thing to do is throw them away,,, and one of them was my very first "airplane" plant, the "Momma" plant, and out of it, I had between 50 to 70 plants, along with a couple of others.... so I bring my Palm in that doubled in size over the summer, and some of my other larger plants, I get them in, and then find ants in the bottoms of two of them outside.... so then I got paranoid, that these in here maybe have ants, and even after spraying them, and letting them stay out until they dry, I now am making to watch for signs of ants, because I certainly do not want those in my house....

My Chi-Weenie Bub's already has a very huge issue, with allergies, and sneezing, plus he stays "itchy" all the time... and sometimes snores... so I something he is allergic to and I surely don't want to make it worse by finding I have brought ants in the house...

I've had to miss twice being able to go see a new puppy due to running everywhere else, and now the weather was suppsed to get very bad, so I postponed Bub's Vet visit for today, and now dammit the weather seems fine and I could have taken him anyway... s that upsets me.... his nails are so long, and he will not allow anyone to touch his feet, last time I had to muzzle him, because he nipped at my Vet's assistant and I just hate having to put that thing on him,,,,,

Now my own Rheumatologist appt did not really turn out well... of all days, and I had been ill for weeks with a Flare before i went, and then finally the day arrives so I can go see him, and that is the one day, I am "feeling better" and my knuckes were not swollen as they have been, then he gives me a flu shot, and I will be damned if for the first time, the shot made me sick!!! I know they should not, but I came down running a fever, chills, feeling totally exhausted and weak for like 5 days after the shot.... I even asked my PCP and my Pharmacist if they have had others complain about it, and I know my Pharmacist said Yes, so I figure due to my autoimmune issues and all of the added stress, I may have had a "case" of the flu, and but I had a Lupus Flare, but until I had the vaccine for two weeks, they could not give me one at that moment, because it had only been a week, and it takes two for the vaccine to have its full effect... and if they had given me an injection and dosage pack then it may have made the flu vaccine less effective... so now it has been two weeks, and I still have the flare, but I feel like hell now and my fatigue is so bad, I don't even have enough strength to take myself to see my PCP...

Then there is the ordeal of finding a New "Medicare Advantage PLan"  especially for me... even though the "Obama" ordeal should have stopped the "Medi-gap" policies for "discriminating" against me because I am not 65 yet, they still do... and the one I found would cost me 700.00 A MONTH just to have a Medi-Gap" policy.

But, Untied Healthcare, Secure Horizons SUCK, SUCK, SUCK, AND MORE SUCK!!!! That was the worst mistake I made changing from Humana over to them last year.., they are liars, they are scammers, they drive myself and my Mom nuts with constant phone calls, mail and you name it.... wanting to have a "home visit" or "check my medications" and as I have told them, I DO NOT NEED a home visit, and my medications are fully understood, and I have no need for them to disrupt my life, and furthermore I AM TOTALLY PEEVED AT AARP!!!!! They should be ashamed of themselves for "sponoring" such a lousy, no  or even our Urgent Care.... it is insane.. so now I have to make that decision for both Mom and myself as to whom to go to and what type of a plan etc....

Then there is this entire ORDEAL about this "accident" that happened in March 26th 2014.. when my soon to be ex-husband as I had been told at first was accidentally "tapped" going into the Dallas area on I-45, and they spun the car out of control, Jim claims he remembers nothing, and now they are saying that "HE" initially hit the edge of the Tahoe on the back, and it went off the highway, but an 18 wheel tractor trailer who was behind Jim, was on his cell phone, and if he had not been, he would not have RAN OVER the car!!!! This had not been like 18 MONTHS ago and is still ongoing!!! Rather than "mediate" which is what we felt the whole time they would do, it appears they will go to trial, which means once again, my life turned upside down and right side out, and in all honesty, I do not even know WHY I am a part of this????? Jim left 4 months ago, and I found out, that he stands to get "double" the suit, if I AM NOT with him!!! Good reason to suddenly move back to Seattle, and me not know why.... after 13 years together, and 10 married, even with all of his issues now not able to walk, drive, and the list goes on and on, he all of a sudden gets a ticket, and flies back to Seattle.... So, later I learn that he gets "double" the money if I am not "his caretaker" anymore... and what about my CARETAKER????? I can't even get a neighbor to help me move something heavy, and now they act like I "ran him off" the ones next door will not speak, and he used to mow the lawn and help us out, the whole time Jim was here, the day Jim left, it is like I DO NOT EXIST!!!!!

Now, it appears this "could go to trial" which means a week or more going to Dallas everyday to a court, and honestly, I feel this has all been a "shaft" on my acct... he is getting the money, unlike what I was told in the beginning, even though it has caused me to LOSE all of my Teeth, have major complications with my Lupus and RA, the stress I am already under is bad enough, and my doctors continue to tell me if I don't get some "peace of mind" I may not survive a 3RD ONE!!!!!!

So, I am SICK AND TIRED OF ALL MY LIFE, TURNED UPSIDE DOWN... and I feel as if I am just a DOORMAT.... when I can "help" then everyone is after me... yet, when it comes to me needing help, everyone seems to "disappear".....

I feel like my time is so totally wrapped up in something else, or someone else, that I can't sit down to work on my blog, write my book and finish it, I feel like I've had to let myself get behind on my advocacy work - everything my life that "matters" to me, not just health wise, but my pup, and now after Tazzy passing away, Bub's and I feel all alone, and I can tell he is continuing to miss her terribly... but because of other "stuff", I could not even shake loose long enough to go look at a pup for adoption, and had the chance today, yet the weather says we are supposed to have 100% thunderstorms, lightening, flash floods, and is could even hail... well, I can't run over to Waxahachie, not knowing whether the weather might turn horrible within moments... it just now began to sprinkle here, and I could have went and took Bub's for his shots and his nails cut, but it appeared as if that weather would be here about the time I needed to go to the Vet... and alas I could have gone, never fails... so now that is postponed, and I had to postpone going to Waxahachie, as I said I certainly can't take a chance into getting into a flash flood, or powerful thunderstorm, or some idiot running over me.. which happens quite frequently on 287 when the roads are DRY, much less any rain on them....

Then it is my own health issues, lots I have "left undone" simply because I have to get my Mom feeling better, and make sure she is not having some really terrible kidney issues, or something going on now with that valve in her heart.... those things are terribly important.... yet, my life, my home, my car, my Bub's, me.... all of that is also crucial, if I a not WELL, whether emotionally, physically, or mentally, then I am certainly no good to anyone else...

It always takes me back to the "spoon theory"..... I ONLY HAVE so many "spoons" a day and it gets to the place, that I feel as if I have "less" each day.

So, when I have, let's say 10 spoons - and to do my laundry, take out the trash, put a chicken on to cook in my Crockpot, bake a cake, and try to deal with just getting a "few" of my houseplants in before the cold hits.... that is already over 5 spoons, and if I take a shower, than that uses at least 2 to 3 spoons, depending on it I have to dress to go out to town, run errands, and so on.... by the time I "fix" Bub's and I dinner, make sure all is well, locked up, and even try to get online enough to write either here, on FB, my blog then I have already "borrowed" spoons from the next day....

And if I am already not well, especially dealing with a Lupus Migraine and a flare, then that strips me of 4 spoons or more before anything else begins in a day.... then errands, medications, taking Mom to the store, or to do labs, or to shop, or having to go and pick up 5 or 6 gallons of drinking water... we refuse now to drink our tap water, or if there are bills to pay, or I have medications to pick up, and I've used DOZENS of SPOONS way too far in advance, trying to upstop my sewer line, completely redo the wiring in a big lamp... I have a ceiling fan, and I need to get it up in my living room, then I find that I don't have just ONE broken window that has been "broken" and held together with duct tape and cardboard now for months, due to it hailing, I also found another broken one yesterday in my bedroom and I have no clue to even why it is cracked all the way across it side to side.... plus in that spare bedroom where the other one is, I have another one that someone tried to "repair" by caulking up the hole in it, but all of those 4 or 5 windows back there are so brittle, and they are so loose, because all of the sealant has fallen away or had gotten so brittle, that they ALL need to be replaced or at least replace the two that are broken and then pin and glaze the others... and I have the push pins and glaze, but guess what??? I know how, but cannot find the time to do it, nor can I find the time to pain my house.... which I wanted to do before the colder winter came in, I have two gallons of brand new outside white paint, and I have already had them back once to be shaken so I could begin painting, but of course there is always something that takes me away from what I feel I need to be doing... all are important and yes, I could "hire" someone to put in the ceiling fan, and replace the windows, but on the monthly check I receive from my Social Security, there is no way, I can afford to have people hired to come to do it.... and as I said, above, as many times as I have done things for others, out of the kindness of my heart, you think anyone standing in these yards around me, will offer to help??? NOT ONE!!!!

I have to wonder where I went so wrong, that I feel I am totally being punished, and I have no clue as to why.....

As someone told me not long ago, "You are TOO nice"! Start saying NO to some of this stuff... if it is going to cause me to lose out on time I need to spend doing things that are important for myself, Bub's and my home, then there needs to be a moment to stop and say, hey, I would love to, but I am just too far behind, and I am too overwhelmed as it is, so I have to decline.... but I find it difficult to do that....

Dowes this have anything to do with autoimmune illnesses, Lupus, RA, Sjogren's, Invisible Illnesses, Chronic Pain, Chronic Fatigue, medications and so forth YES!!!!! Yes it has all to do with them... I am no longer able to DO it ALL! BUT WHERE DO YOU FIND A PLACE TO FINALLY SAY NO!.... THERE IS WHERE I AM AT A LOSS...

Thursday, October 15, 2015

What "Out of the Mouths of Babes" Taught Me this Morning about Lupus and Advocacy!!!!

I have to post this in regard to ALL of us EFFECTED by LUPUS!!! My daughter called a little while ago, as most know she lives about 8 hours away around the Corpus Christ area, and she was talking about Selena Gomez having Lupus. I told her I had just began to read that, and she said that the woman she works with, has a son who is 24 years old, and he was diagnosed with Lupus... recently he almost died due to it almost shutting down his kidneys.. and then "out of the mouths of babes comes" This is not a "rare" disease, it effects so many and there needs to be much more awareness about it!!!! As I almost fainted because of course here I am her Mother who has it among other A illnesses, and of course I am a huge Advocate for Lupus and RA...Sjogren's and so forth. So, the "point" here it dawned on me, that first of all of course she knows that I have Lupus, but her thoughts have been it is a "rare" disease, and she knows that I help to spread awareness and then it dawned on me - 

UNTIL WE make LUPUS a COMMON HOUSEHOLD TERM like CANCER - never will all of our advocacy be enough.. even those out there educated about it, with a family member with it, like a Mother, and all she knows about me, it still to her seems to be a "rare" issue - then when she said, but Mom is is NOT - the news always makes it sound like some "rare" disease but it is far from being rare... it touches MANY people's lives daily and then she said and they give "chemotherapy" medications for it - that Selena Gomez is on a much smaller dose, but it is a "cancer" drug that is used"- now my kids know that I am on medication and neither of them live close enough to "see me" when I am ill, or see what the doctors say, and so on 0 but of all of the advocacy work I do- I "missed the boat" in telling my own daughter that I am TOO on chemotherapy type medication just also in a much smaller dose.... I felt as if in my own way, to those closest to me, I have FAILED miserably in my "activism" and voice for these diseases..... again that is when it dawned on me until we QUIT having people think of these diseases as "rare" and they become as "well-known" as cancer, heart disease, diabetes etc.... then we shall never HAVE ENOUGH AWARENESS out there.... I told her that kids as young as 9 MONTHS old can be diagnosed with JRA.... and I did not have time to explain more about how that is found, but it surely hit me square in the face, that our activism, advocacy, and awareness need to be MUCH, MUCH more...Lupus as I said, needs to be a "household" word......

So, I now am even MORE AWARE that we need MORE AWARENESS! All too often these types of illnesses are considered "rare" yet as we know now, daily, we hear of many, many more cases, and people that have it Lupus, RA, Sjogren's and such for YEARS and they do not get diagnosed until after they are much more ill that they should have to be!

This to me is just NOT ACCEPTABLE and it should NOT BE acceptable to any of us.... whether you have Lupus and so forth, or a family member with it or a friend, and so on, awareness is they key to finding a cure, a reason for, how to STOP LUPUS before it attacks someone so young, that their kidneys fail..... Her comments to me certainly gave me chills down my back, to think I was diagnosed about 2009 or so with Lupus, RA, etc... and even though I have made it very well aware to both my kids and my Mom and other relatives, friends and such... and even put my heart and soul into all of the Advocacy I can, it is NOT ENOUGH1 STANDING on those White House Steps in 2014, and telling CONGRESS having these disease is NOT ACCEPTABLE and yet each day we grow it seems almost further from education people about this not being some very rare something, but it is a part of MANY and THEIR EVERYDAY LIFE!!!!!

I have to keep DIGGING away and trying to do all I can to spread information about Autoimmune illnesses and just how deadly they can be.....

WE must ALL do so!


Thursday, September 24, 2015

#RA Blog Week WEGO Day 4 - 5 things I have learned About Myself since Diagnosed with RA

Another great subject to ponder! What 5 things I have learned having Rheumatoid Arthritis?

I am sure MANY and/OR ALL of us, could state many, many more than 5 things we have learned over the course of days after you are diagnosed with RA.

I've learned that even through all of the fatigue, all of the complications, medications, turmoil, the "loss" of what a normal life had been before RA was for me, that I am MUCH STRONGER, and I can DEAL mentally and emotionally with ALL things than I used to think I could.

I can "handle" helping my Mom, running errands at times, shopping, and all of the usual things we all need or must do in a day, week, month or as the years go by.

I also have had to "deal" with a new normal. I've not been sure if I could truly deal with all that having any chronic illness and/or chronic pain when I was diagnosed. I cannot DO all as I used to be able to. I've had to give up many things I loved so much. Going on an all day shopping spree, and maybe just window shopping, but I was able to go, and then come home to get ready and go dancing, or out to eat with friends.

I no longer CAN do those things, but I have found out that I can live with NOT doing some things, yet I've learned new things that now can occupy me, like advocacy, activism, and being an Ambassador. I learned how good I am at being in the realms of helping others go through what I may have or are going through too.

I've learned that there are BILLIONS of places online to get information, do research, and find out any and everything you want to learn about your health issues. But, I have learned to "watch" carefully some of what I see. NOT ALL of the information out there in Cyber Space is true.

I have to learn how to give myself injections. I also have had to learn "where" and "where not" the lab people can "stick" me to draw blood. My veins are tiny, and have lots of "valves" in them (something else I learned) thus I have about 3 places that they need to use (if they will listen) or I have to be stuck several times before they can "hit" the spot.

I've learned how to improvise, and find different ways to open a jar lid, or a can. I've had to make sure I take enough reusable bags into the market, so they are not too heavy for me to carry. I've learned to "ask" for help, which is so difficult for me to do. I just dislike having to ask anyone to "help" me, yet I have learned at times someone else has to do it, because for one reason or the other I can't.

I could go on and on about what I have learned, think about, and also cherishing each and every moment of those that I love and hold dearly. Time is truly precious. This week for me has proved that 50 times over for sure.

Wednesday, June 10, 2015

Lots of thoughts and prayers needed now...

I can't really go into lots of details at the moment, but there are some really life changing things going on at this time for myself, and my family.

When you are chronically ill, and or in chronic pain... at the first you may never have the thought about HOW MUCH your life can change. Then as the doctors visits, medications, tests, surgeries, fatigue.... and so many things change, physically, emotionally, mentally... all aspects of what used to be "normal"... can be gone within a breath's space...

Then you have two people, one that has been "healthier" that could stand in for the other, when illness or flares hit... and all of a sudden that person is also either as ill as you, or even worse. So, that is when nothing is the same... you may think things will improve, we will find a "new normal".... and it just takes time, patience, tenacity... will power, respect, and love to finally find whatever can go on in the future. Yet, a "dam" appears... the river of life that you felt was so awesome, suddenly turns into a raging force, driving one in one direction, a fork you may say, and the other, suddenly winds up in the opposite direction.... and that is when "trying to piece back your life" can either be not really going to happen, might happen, or usually you finally KNOW, things must change... and change drastically, for both of your sakes...

As I said, I can't go into lots of details, and for now, I think those that do know me, and have an understanding of all of the drama, the illnesses, surgeries, doctors, and pain... from the physical, to the emotional, mental, and daily life - has all bundled up into a huge knot, and you just cannot manage to go on that way.

We are NEVER guaranteed anything but to "live" and then to "die".... in between things can be smooth, even, rocky, a landslide, and so often we are left wondering why the hell this happened? All of the questions, why am I being punished? Am I a "bad" person? Why can't I just have a break? Why can't something be "easy" for a change????

None of us know that answer. And throughout my entire life, most EVERYTHING has been a challenge. There are not many things for me, that have came "easy"... I worked, fought, crawled up the mountain, as the stones dug into my knees.... and slid back down again.... and I do know that only through FAITH and HOPE can I continue to one step at a time, moment by moment, then hour by hour, day by day.... week by week... and then months... years... and one day when I am no longer on this Earth... then all shall be revealed.

So, I WILL continue on with my 3rd book... and hope to finish it up on schedule by the end of the year. I WILL continue to be a voice, activist, advocate, and ambassador...
Lord willing, and my health continue to half way act right.... and hopefully the brain fog, pain and suffering may hopefully have something done about soon... either by surgery, by new medications... and so forth...

I shall give more information as the next days go along... so PLEASE continue to come and join in on my blog... and for those who have always been here to support, encourage, provide strength, faith, and prayers... I am so very grateful for all of you....

Thursday, May 28, 2015

When it finally "dawns on you" why you seem so totally living in "chaos" even above the drama of Chronic Pain and Chronic Illnesses

I have spent moments, hours, days, weeks, even I am sure YEARS trying to figure out exactly "why" my life seems to be in a "chaotic" whirlwind almost daily.

Yes, having autoimmune and/or any type of "chronic illnesses" along with "chronic pain" puts your life in turmoil more often it seems than not.

Yet, that still does not explain why, with only 2 adults, 2 pups, in a tiny two bedroom, barely over a 1,000 sq foot home, and a back and front lawn that are definitely average in size, along with a "back forty" a small bit of land that up until this fall had the neighbors sheep and goats on it, so we never had to be concerned on it. Why it seems that EVERY DAY of my life I look around, and I am constantly dusting, vacuuming, mopping, sweeping, picking up things, doing laundry, taking out trash, scrubbing tub and toilet. Yet both inside and out, I feel like it appears that this house is dirty, and it is just falling down around me every day a bit more.

When I bought it, I put a LOT of money into it, there was still SO MUCH "restoration" that needed to be done, yet the money ran out. So, even though there was at least 10,000.00 or more put into it, for painting, redoing floors, carpets, furniture, redoing plumbing, a lot of the electrical rewiring, lots of new plumbing, a brand new shower/tub, a new toliet, taking in a wall, knocking one out to have a bit of closet space and to make the bathroom larger. Yet, when it came to redoing flooring in the bath, kitchen, doing the finishing work i the laundry room, a carport had to be put up, and now the list is still endless.

We had some storm windows put in, and had a great deal of insulation put in the walls and attic. Yet, one bedroom did not get the new windows, and the windows are so old, the glass brittle, they lack most of the correct Pins and "glazing" that should be around them. That entire room has really never had been redone, so it needs paint, the windows repaired, a new ceiling fan, carpeting laid, and along with now the outside of the house needs a complete paint job, and some rotten board repaired.

So, I see one of my "mistakes" was not considering just how much MORE I needed in finances to really PUT this home back to its original state. I lacked about 5,000.00 back then, and now with other things going on, it is more like 10,000.00  more that needs to be put in... a new roof, the ceiling in many of the rooms really need to be either repainted or redone. The floors in the kitchen, bath and laundry room laid in. The walls that are in the bath need to be some still put in, and/or "mudded" and textured for paint. So, I should have known that without ALL of those funds, trying to "make" this house "look" neat and clean is very difficult, if you still have "portions" that are not yet up.

So, I look around, and even though SO MUCH work was done, and ALL for the most part myself and my husband did it all. From redoing hardwood flooring to painting, texturing, putting in a larger shower/tub, all of the plumbing, still the house no matter HOW MUCH I clean it, to me it looks dirty. I can dust, mop,sweep, do laundry, and almost every day it could be done again. Nothing ever looks "clean". Even though I KNOW it is, when it is "old" stained, and needs replacing, it just never appears to be clean.

Of course, then there were a stove/oven, the refrigerator, the washer and dryer, bed, furniture for the living room, and the list of all of those things, from the "renovation" work, to all of the other items needed to run a home, lawn mower, weedeater, tools... we had to buy a huge array of tools, saws, screwdrivers, wrenches, tree trimmers, you name it, of course if you do lawn work, and work around your home, you know just how many tools that can take. Blinds, curtains, sheets, towels... yes, we had "some" of these after being together for a pretty good length of time, but even those were beginning to show their own signs of "wear and tear".

So, then come along, and I became "chronically ill" - with autoimmune illnesses, that led into many surgeries, doctors, tests, you name it, I went through it. It seemed endless. Then, many of the things I could do, no longer was I able to do, when it came to the DIY around the house. I had both knees replaced, a shoulder replaced, surgeries on other joints, my neck had to have surgery, then I had "double hernia" surgery, not that long ago... thus me being able to even, "mow", do things in the yard as I once did, many things in the house, either I cannot do them anymore, or it takes me 5 TIMES as long as it used to.

My energy level is constantly up and down. The fatigue at times is just horrid. The brain fog, now has "captured" my mind so much, that even trying to write some days seems like it might be impossible.

So, now after being in this home, that we loved, we wanted, we wanted something we could "FIX UP" ourselves... yet, now it needs a new roof, we need gravel under the carport, windows finished in that back room, carpet laid in there, the house needs a painting all over... and again the list is endless .... and again it seems no matter how much I clean, how much I sweep, it seems nothing is ever "finished" or clean.

Texas is known for its "dust" that seems to come from no where. But, there is a constant battle with a grey dust that seems to settle daily on everything. As I said in the beginning, it just seems endless.\

What makes it even worse, I would much rather be here, at the computer, writing my book, so I can get it published. Yet, that always seems to be the "last" thing on the bottom of an endless to do list. So, by the time I reach down and pull up more things to be done, I am too worn out, physically, mentally and emotionally to really put myself into the writing as I want to.

So, now I sit here, daily, wanting so badly for things to just STOP for a few days, stay clean, not have endless errands to run, or things to do like shopping, mail, laundry, cooking, mopping, paying bills... all of that could just be put on hold for a few weeks so I can have some quality time to write...

Right now, it is almost 1 PM. I am on "empty" as far as energy, with sheets to be put back on the bed, and other clothes to be hung up or put away. I need a shower, and I'm drenched in sweat from the humidity. I have already swept, done laundry, mopped, dusted, including under the bed, behind it, and so on, it id trash day and after a holiday and a massive amount of bad weather I had 3 can FULL of not just trash, but limbs, and 4 other huge limbs too large to cut up. In between, I've done some things on line, but I am worn out from these past few weeks of energy.... and it seems there is never a break. I began trying to work on the inside windows in the back spare room. Well, that is going to take time to sand down, fill in so many places with wood putty and then get them ready to paint. After that, they have to be fixed from the outside with the pins and glazing which is very time consuming. I have a total of 5 windows, all of which need that work on them. I actually still have a broken windows from the hail storm last year. I had hail break a window when I was ill with pneumonia, so it is taped up and sealed up the best I can until I can get it measured and have someone to help me put it in. I can, but I need another person to hold it in place, as I can't hold it and pin it at the same time..

So, hind sight is "20/20".... there are so many things I look back on now, and so wished I would have done differently. I can't tell it all here in one post, but from some of my "relationships", to homes, to where I am living in the nation, to health problems, jobs... and TIME to write my book! That is probably THE MOST important thing to me, is to FINISH THAT BOOK AND GET IT PUBLISHED! But, how does ONE person do it all? And then have enough "time and energy" to feel like doing it all, and then spending time on my book daily.

By the time I've been up since sometimes 5AM, and 4 PM rolls around, I am totally exhausted. I wished I had an easy answer... I wished I had any answer.....

Monday, April 27, 2015

Monday #HAWMC - WEGO Writers' Challenge! H. E. A. L.T. H. - April 27th 2015

Talk about a post to think about. So many "words" for so many illnesses, symptoms, medications and the like. So, I shall give this one a try today  - come up with an "acronym" to describe my activist journey.

"Hoping Extreme Activism Leans Towards Healing"







This was is not as easy as one might think. To really use only what "letters" given or a word for example, such as this without putting any other "in between" words such as "IN' An, The, and so forth takes some thought. So, since I do at times "feel" like I want to take my own "Activism" to the "Extremes" so one day, what I have accomplished does lean towards others "healing".....

Great one WEGO!!!!!!

Thursday, April 23, 2015

WEGO Writer's Challenge Month April 23, 2015 - "Our Choice" of what to Write About

I have a smile as I start this. With WEGO allowing us a "write about what you you choose today" could possibly be a very lengthy readers challenge!

As I always warn people, I don't think I am even capable of writing anything "short". Even my emails can consist of enough words to be a "Novella" at times. That is the "writer" in me. Some people have "bugs" in them... I have "writer" and "voice" within my nature. The "bug" thing was to be a "ding" from that show that was on about all of the different "creatures" people had picked up, and then got very ill due to them. From fleas, deer ticks, to all kinds of worms, and so forth. That show was eery, but also interesting.

Anyway, as I mull it around in my mind what subject I may like to talk about, one item that tends to comes up in my everyday life is, "loyalty". When I say loyalty that could mean anything from being a "loyal" customer to a department store, to a loyal friend.

I was raised "old school" I guess you may call it. My Dad taught me (he was born in 1923 and lived a bit of what he remembered through the Great Depression), although he was very young; that everyone gets their commendations for being truthful, honest, loyal, committed, and to keep their word. On jobs, my Dad first of all was not all that thrilled about me having to work when I was young and my kids small. He was so totally raised in such a different time frame, that women did for the most part stay at home, and did all of those things, and men earned the paycheck and took care of bills.

Well, we all know that as "great" and fantastic is that may sound, for the most part, if you have a family, it takes two and sometimes MORE than to put kids through school, feed everyone, make mortgage payments, car payments, and unless you are fortunate enough, you never have "cash" to buy a car outright. You usually don't have "cash" to do many things for your home, your kids, and family outright, because everywhere we turn, things are so much more expensive. Cars (new) are no longer $2,000.00 cash. Heck you can barely use that for a down payment. If you are lucky, it will be that, but if not, you can expect more.

Same way with homes. My parents paid $50.00 a MONTH for their tiny 2 bedroom home, that included taxes and insurance for 30 YEARS. I am talking about a home that is barely 1,000 square feet. OF course they paid that off many, many years ago. My Mom still lives in that home also.

So, the idea of a "small town" everyone knows everyone, and used to provide a running tab at a local store that you paid at the end of the week. Or the small town, you got an awesome deal on local items due to the "Mom and Pop" stores that did line our city streets. Shamefully most of those are gone. Unless they have really worked to KEEP up a "self-owned" store; they have been overtaken by the HUGE "one stop shops" of these last several decades.

So, onto what I feel my post today is all about. Not long ago I had a situation where I felt that I needed to "honor" a particular group and my own "loyalty" to me, was to make sure I did all I could to promote things for these people. Well, I was asked some questions, and due to my background of feeling like I needed to remain loyal to one, the questions asked from another seemed to be "fishing for me" to use the first event to also "help promote" the 2nd event.

Well, I guess that is where I see things a bit differently than what happens in this time of life. I was told that it was not that I was being "not loyal" to first first event, if I used it to gain information, and "promote" at the same time another event. I felt uncomfortable with this, because to me, I was "using" one to help the other.

I was then told, that is was all a part of "networking". In other words, using "resources" from one place, whether a job, an event, a group or whatever, using your information from one to help the 2nd was "okay" and not "cheating" your original group you were doing things for.

I guess  my "idea" is that for instance, I was working at a women's clothing store. I had been an employee for a few years, and I was "loyal" to them. I felt that was the proper thing to do. But, later down the line, I was approached by another women's clothing store, that would be a "rival" to where I worked. They asked me to send some clients there way by telling those who come into where I work, that they could go over to the "other" store and pay less, or get a discount, or something of the sort. Or say I was "moonlighting" at a competitors store, while I was supposed to be supporting who I worked for.

Those are kind of what I am talking about. I consider "networking" a tool used let's say by several organizations that do similar things. Maybe they are both in the place of "research" when it comes to a new stomach bug, or a new medication. If "they" as companies decide to "combine their efforts", then to me that is fine. It is on the "up and up", the Boards of both will determine all of what will happen, thus that is great and dandy.

But, if one or two employees from one place, go over to a competitor, and give out vital information about themselves to the rival, or in any way try and "get their foot in the door" by having someone who works there do it for them, to me that is NOT networking. It is just not correct. I feel it is something that if you cannot be "loyal" as a representative, then you should not be there at all. No one should "feel" even say best friends.... there are 3 of them. One tells the middle one about a certain free item, or better buy, or tells them that the "3rd" friends information could be used to help the other... to me that is just poor character, and no one should ever be asked in any shape or form, whether you volunteer, whether you work somewhere, any thing where it involves something helping the "rival" then to me that is just not how I was brought up. You GET MERIT for a job well done! You get where you are destined by being loyal, upfront, trustworthy, and not "back stabbing" someone else per'se.

Now I realize with this nation and our world in such a horrid mess all around, that these types of activities go on daily. Whether it be a "news" station trying to one up another, or a clothing retailer trying to gather inside information about a rival by asking someone to do the "snooping" around etc.

There are usually at least "two" sides to every story, and usually more than two. So, what one person deems, "networking" even though they may not have really used the entire truthful way to obtain a "foot in the door" or not, everyone sees things in a different light.

This is NOT about any one situation that has involved myself, but my daughter has ran into in even on a "school level" as far as her kids go. She sees it all the time, those who sometimes "get their way" and they are not as qualified as another child, then hard feelings develop.

If this does not make sense, blame it on my Lupus/RA/Sjogrens Brain fog!!!  This has came to mind to me on several occasions and I really have never written my opinion on the subject..

There is no "right or wrong" here... just different beliefs, and often times it totally has to do with the "time frame" in life, how you were raised, and so on....

Tuesday, April 21, 2015

WEGO Writers Challenge April 20th, 2015 - Reflection... Your ambitions, hopes and how things have came together for you - Reflection from Life, to Chronic Illness

Each of us, no matter whether we are an activist, voice, Ambassador, Volunteer, all have some set of "what we hope to help do, and what we feel we may gain from doing those particular activities.

Whether you give out lunches in your home town daily to the elderly, or you have a blog that is all about how you want to help others through horrendous illnesses, whether it be mental, physical, or emotional... for the most part, when do you any type of event that is "volunteering" it comes from within your heart and soul.

Most of us "expect nothing" back. We don't expect a "pay check". For many of us, notoriety, fame, being "patted" on the back is really nothing we feel is necessary. We "GIVE" because that is what we want to do. That simple act of "random kindness" gives us feeling enough inside knowing we did something "extra" for someone's day. Maybe that door you held open for someone behind you, helped them put a smile on their face, in the midst of a terrible day. That "E-card" to a friend who is ill, who maybe overwhelmed, who may be feeling like life is a bit too much, and their comes that special card, just when they need it the most.

So, reflection back on my life and all of my "volunteering" even when I was 13 years old and was the only "Candy Striper" at the hospital at that time. Those days there taught me so many valuable lessons about life, people, the medical field, and gave me a chance to give of myself freely.

From there, whether it be a shoulder to cry on, a friend needing a lift due to their car being on the blink, sharing a cup of coffee with someone upset, just telling the checker and the guy doing the sacking at the grocery store, "Thank You!" and that you appreciate their help.

I've had to "overcome" some issues when it comes to I guess you might call it "pride". Before I had all of the joint issues, surgeries, Lupus, RA, and so on, I usually took out my own baskets from the stores. It was just something I did, and of course many of our stores now don't even offer the service. Fortunately, our local grocery store that is here in Texas always offers the assistance, which is a good thing. I know for the elderly people it is a huge help, and when I am having issues with my back, or joints having had surgery, or just not feeling well. It truly does help to have someone take the basket out and put your groceries in the car. A great example for me just a couple of days ago. I noticed our market was really busy. They were trying to keep up with checking and getting the merchandise sacked. So, at first I told them, don't worry about it, I will just take it out myself this time. Well, I should have allowed them to. First of all, the way the parking lot is designed, you are on a slight slope as you come out of the store. Of course that makes it a bit easier to push the baskets. But, when I have a huge bill of items, or heavy items, that basket will try and "run away" from you outside. I had a gentleman that had his two young children with him, stop and help me hold the basket that day. I was so elated to see we still have some awesome people in this world. I commended him with a huge thank you, and I also commended him for having his two kids, and they were younger children with him at the store. Often times, you don't see as many men with their younger children especially at the store. So, it was just an all around "thanks" for everything I witnessed there within a few moments of this gentleman.

So, whether it maybe reflection on advocacy work, or having someone help you out when you least expect it, for me, my reflections are on those that do some wonderful things and their not expecting a "thank you" for it.

My "hopes" are that I also continue to "share" a helping hand or a thank you.  My goals are to become that "author and writer" of a book that truly will help others. Some of those things have suddenly within the last weeks came together.

Then there are many "detours" that come along, unexpected, that can delay all of those ambitions, hopes and what we feel we truly need to accomplish in our time here.

The chronic illnesses of course have all too often caused a delay in some of my goals, dreams and wishes. In fact, there are some of those things, that I may never be able to do again. At times that really bothers me. Yet, I also try and look back to remember when I DID do that thing, or I DID get to go to that concert, or vacation... or something as simple as now I am looking forward to being able to get away for a night, and have my Mom and I take a couple of hour trip to the Casino and possibly spend the night.

I also hope that my own health will hold out, so I can become a better advocate, activist and an Ambassador. I hope to be able to go back to Washington DC next March and once again "give voice" for ALL of us with these horrid arthritic illnesses.

I can also reflect on the facts that I feel I've "built" a very good repoire with the "non-profits" that I advocate for. Or really I should say I feel they have truly "taken me under their wing" and given me some amazing opportunities to be the advocate, activist, Ambassador and Volunteer that I want and will continue to want to be. So, I say a huge "Thank You" to all of those that are so incredible in the realms of health and helping others.