Showing posts with label activism. Show all posts
Showing posts with label activism. Show all posts

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.


WEGO HEALTH

 

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!

 

Tuesday, September 15, 2015

When You are Unable to be somewhere, participate in events, whether family, friends and your activist, advocacy things... the challenge is to NOT feel guilty or as if you are letting others down....

 

 

https://creakyjoints.org/blog/rsvp-blues-when-autoimmune-disease-keeps-you-home-saying-no-to-invites/#.Vfg6WntAzIU

 

A great article about just how we all too often feel - when we deal daily with Chronic Illnesses and/or Pain. The challenges of being able to be at events, be with family and friends... how we feel "guilty" for thinking we are letting others down... it is NOT our fault, yet, I know for myself, I feel guilty, frustrated and like everyone around me thinks I am just making this up and I am not all that sick... People in general see us outside the home, when we are "okay"... many do not witness those days, weeks, or even months that we are NOT okay....

 

Friday, July 31, 2015

How to React to an "invisible bacteria" invading your body, when Autoimmune Diseases are involved & how do you know when you are "well"?

Good question! For myself, YES, it is!  Whether it is a "missing" bone out of my spine, that was found after 55 years of life, or an unusual "lump" on the top of my let thigh, my entire "medical" life always evolves around being unusual, unique, complicated, complex, and some doctors almost "fear" having to treat me at times.

We all in the world now share an added sense of "something is worse now" than 20 years ago. Bacteria now that invades our bodies have mutated and changed so much, many of the well known medications to treat these bacterial infections no longer are able to do so. I found that over the years our bodies do have an extremely interesting way they fight certain things... like this lump on the top of my left thing. IT is my own immune system although compromised, that began getting that infection "rounded up" an circled to push it into this lump, in order to try and stop it from spreading more. So even with a body and immune system that tends to not work properly at times, I still have enough of my immunity, that the body tries its best to fend off the bacteria, thus the "lump" under my skin is cellulitis. But, unless you know about it, or it breaks to the outer skin, it can go possibly not noticed. Of course when the lump came up and began to grow so quickly I knew there was something very wrong.

things with myself and my Mom are just insane. Between my own needing for back surgery, and now to find out my Mom, who we thought has a hip problem, find out it is also her lumbar spine and arthritis. So, between running to doctors, to therapy, for tests, some local and some in Dallas, and then me to come down with the cellulitis, plus I have not even gotten the chest X-ray so I can go on Xeljanz. My "TB" blood test came back "inconclusive" but they feel it is because it did not get tested quickly enough, thus that happens. But, until I have the X-ray, my insurance will not approve the medication.

Of course the sweltering temperatures are not helping... we are under a heat warning for at least the next 5 days and more... looking at temps above 105 plus the heat indeces bringing it up to 110 and above at times...

Things are just a mess right now and I am about ready to throw in the towel, throw my hands up, and then hide under the bed for the next month or so... Gosh knows when it rains it pours... and my doctors all agree, I am a "complex and complicated" patient... YA THINK???

I apologize for not posting more here, but due to my health issues and then all of Mom's things, I have really not been able to sit here for very long to post... I decided I did need to come in and post a few things and share why I have been "lax" in my postings lately....

Here are a few links also I want to share with you...

http://blog.arthritis.org/stories-of-yes/miss-teen-minnesota-juvenile-arthritis/

http://www.lupusresearchinstitute.org/lupus-facts/fight-lupus/lupus-and-your-skin


http://www.lupus.org/general-news/entry/statement-on-the-results-of-epratuzumab-study-for-the-treatment-of-lupus


http://blog.arthritis.org/living-with-arthritis/omega-3-fatty-acids-arthritis/?utm_source=facebook

By the way, talking about "Fish oil" and such especially for your pets, dogs in particular, I had a friend tell me about her dog, who was very, very old and had severe issues with joints. She had put her on "Canna - Pet" which is "industrial hemp powder".... I tried it for Tazz a couple of months... and it just helped her immensely. I was so surprised and thrilled. BUT I was NOT thrilled with the PRICE! The stuff is like $30.00 for a month's supply. In fact, it would be 60.00 a month if you gave them 2 a day... anyway, I did my own research on this "hemp powder" and began to find that there are many "humans" that use it for all types of problems. Especially joint pain, and inflammation... even allergies and so forth. So, I looked on Amazon and found a bottle of "100% hemp powder".... and this has NO THC or whatever the initials are for what is in cannabis that humans use to smoke... it contains none of that... so there is no "high" anyone would get, and it would never show up in the bloodstream or urine. So, I ordered a fairly large canister full at about $10.00. Well, the price right there was much better, but I was not sure how well it would work... It works just as well if not better than those capsules, costs a heck of a lot less, and both dogs even like the taste of it. I can take a treat, or a piece of fresh fruit etc... and roll it in the powder and they just love the flavor. So, I've been giving it to them every morning, and then I put a bit on their food.... I can see both of them up playing, and doing things that before they just almost could not do, especially Tazzy.... I wanted to share this with all of you, and also the fish oil they love too. I feared they might eat their food, but they eat better with the fish oil on it.... LOL!!!! Anyway, a bit of information for some of you..


http://www.medpagetoday.com/Rheumatology/Lupus/52814


Lots of great news above... from information about Fish oil and its benefits, to a new Lupus medication on the horizon, Miss Teen who has made her dreams come true in spite of fighting Juvenile Arthritis, and more... I think you will like reading these...

http://www.ucb.com/presscenter/News/article/UCB-announces-Phase-3-clinical-trial-program-for-epratuzumab-in-Systemic-Lupus-Erythematosus-did-not-meet-primary-endpoint-nbsp

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"





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

Hobbies - #HAWMC - Wego Writers Challenge - April 21, 2015 (this is actually a day early for Wednesday the 22nd.

Over the years I've had many different types of "hobbies". I've always been on the "creative side", thus anything with an artistic or creative flare really suits me.

I learned how to crochet and do counted cross-stitch when I was in my early teens. I love to read books. I love to do all types of flower arrangements. You never know what I may come dragging in the house! From a piece of an old log, that I used to put flowers, ribbons and greenery on. I have 3 of them. I've done Christmas themes with them. I've also done Easter themes, and even one year did a "Shamrock Green" for St. Patty's day. I usually have some type of wicker broom, weather, or even some different very straight types of limbs from trees, that I've made sure are dried, wired those together, and put all types of decor on them. I always have one of those hanging on our front door.

I have oil painted, and was told years ago, I definitely had an "eye" for it. I've played the piano since I was about 7 years old, love to just mess around on the drums, keyboard, and even "write" lyrics and come up with the music for them. Of course writing is one of my all time, best loved, hobbies. It began also when I was quite young, and has been something I've done all my life, through every winding road, on a bus headed for Seattle, a plane headed for Washington DC or Vegas, on road trips, and I've been known to "scratch" down a few words to a poem on a piece of paper or a receipt while sitting at a red light.

I have a "huge" hobby, than really probably is not really considered one. But, it began as kind of a "hobby" for me. Then out of what I felt was necessity, being into research about all types of medical problems, from medications, to illnesses, to research over so many things that effect us on a physical level, along with usually a mental level also. Thus, as a hobby it began, yet now it is not only a hobby, that I absolutely love; it has helped me attain I feel some doctors that I trust, given me direction or suggestions when I need them, and also possibly helped some of my physicians to better understand my health issues at times, more than they do. After all, doctors as a whole, are all too often swamped with other patients, calls, pharmaceutical representatives, prescriptions, and the other 1,001 things they must do in the course of a week. So, I have watched a couple of my specialists truly be almost relieved that I do "have some understanding" of my conditions, so they can then decide of a course of action to take when it comes to treating me.

I am someone who loves to bake! I just absolutely love just about everything "sweet"! So, I am almost in "hobby heaven" when I am in the kitchen preparing for some awesome new recipe, for a new pie, cake, cookies, you name it. I love doing it.

I enjoy "people watching" at times. Not to be nosy, or like I want to say anything to them etc. But at times I find it very interesting the items people buy, whether at the market, large stores like "Wally World" or shopping malls. You can truly learn a great deal about someone by what they may have in their grocery cart,  or what kind of clothing they try on in a department store. Perhaps you are out for a stroll, or you are enjoying the outdoors. It is interesting to see what people are doing when they are outside. Are they exercising, playing with their kids, just having some quiet time, listening for nature in all of its glory. No matter where you are, where you go, people can be so totally amazing to watch.

I do like doing some like gardening. I have LOADS of "house plants". If I counted, I would say at least 80, maybe more. Believe me in the winter when they all have to be brought in, our small home looks like "jungle fever" has hit it. I love to be able to take a small plant, and after a bit of love, food and care, it can grow into something so beautiful. I used to love to mow, rake, do heavier gardening types of things, but now with my health issues, some of those things I am no longer able to do as well, if at all.

I am a "giant" DIY person... (do it yourself). Nothing thrills me more than to be able to "repair something", or fix something. My Mom never ceases to be amazed at all I can "do", "fix"... repair. The DIY is "almost" as good as me saving a HUGE amount on groceries, clothes or whatever it maybe. I NEVER and I mean NEVER EVER pay or will pay full price for anything. I am an avid coupon clipper and shopper. I've saved anywhere from 24% all the way up to 85% on certain things along the way. I watch for those "clearance" markdowns, with an additional amount off, and then all of the coupons I can use also. So, for me, "saving" a great amount of off something I really need or want, is a hobby for me. The MORE I save. the happier I am. Don't get me wrong, I am not the "Queen of Coupon-o-holics. I a not one of these buy 50 newspapers, or dumpster dive for them in recycle bins, but I do get mine of out my own newspaper, and then I frequently print MANY coupons. I also NEVER only in a very rare situation pay for "shipping". I always do and about 98% of the time, I do not pay any shipping. So, that is yet another almost hobby for me.

If I sat here and gave some "foggy brain thought" a bit more, I am sure I could come up with several more things I so enjoy doing and consider them hobbies.

A piece of why I do advocacy and activist, and volunteer work, is because they are kind of a hobby to me. Yet, I don't want to sound condescending when I say that. I guess what I really mean is from my first experiences of blogging, and getting into Facebook, then later finding out how much I would love to be a "voice" for others when it comes to illnesses, pain, and even other things in life... kind of back then, were a hobby of sorts. Since then it has turned into much more than a hobby. I feel it is truly a part of my life daily.





Wednesday, January 21, 2015

"Learning" - New Words for Today - and My thoughts about a Certain Quote I stumbled upon...

Okay, time to learn words for the day! 

1)  decumbiture

The time at which a sick person takes to his bed, or during which he is confined to it by disease.

In astrology, the figure of the heavens erected for the time of a person's first taking to his bed from illness. Prognostics of recovery or death were derived from this figure.

The word 'decumbiture' comes from a Latin word meaning 'to lie down'.


2)  libertine
MEANING:
noun: A person who is morally unrestrained.
adjective: Unrestrained by conventions or morality.

ETYMOLOGY:
From Latin libertinus (freedman), from liber (free). Ultimately from the Indo-European root leudh- (to mount up or grow), which also gave us liberty, livery, and deliver. Earliest documented use: 1384.

A THOUGHT FOR TODAY:
In those parts of the world where learning and science has prevailed, miracles have ceased; but in those parts of it as are barbarous and ignorant, miracles are still in vogue. -Ethan Allen, revolutionary (21 Jan 1738-1789)

and now my own "thoughts" about the Thought for Today....

I find the "Thought for the Day" quite interesting. Being that it came from the 1700's, and at the time of course we were not "barbaric" at all, but we also were not out of the woods as far as having a good grip on large corporations, large manufacturing, or items that would make us appear to be very far on the other side of science and learning. We have always been a great deal ahead in some countries as far as our "learning curves" compared to places such as some places in Africa, or down in South America. Yet, look at "Stonehenge" and the "Inca's" and the "housing" or tiers that they "built" or the pyramids... all of those things were designed by "a learned and scientific" society. I believe that those people that built Stonehenge, or the Inca's, and many other people like the Egyptians believed in miracles, yet they also had knowledge behind them also. So, it just seemed very interesting even in the early 1700's that Ethan Allen saw that those who are more attuned into "miraculous" happenings seemed to be less "educated" than some. I guess there are two sides to the coin when it comes to scientific beliefs, knowledge, and the other side of the coin, believing more in a miracle than in it being based with some kind of real explanation. What may seem a miracle to some, can often be explained away as it being a specific answer, rather than it being spiritual or something that happens where knowledge nor science can explain it. Yet, when you look up at the heavens, can "science and knowledge" truly "explain" all that we see and know up there? Some would certainly agree that "all" things can be given explanation to, and not be done like a magical force. Yet, I think as our constant, every changing world is today, more and more even those with the most knowledge can see that some things that happen just cannot have a concrete reasoning behind them. Thus, there are other forces at work in our world that cannot be seen, touched, or felt. But, are here, and logic must fly out the window... I am sure I am not making much sense at this moment, even though I know what I am trying to say... even in the entire jurisdiction of the medical world, there are items that are just not explainable by modern medicine. We see this with physicians and in our medical domain all the time. Doctors at times admit they may not truly have a plausible "why" or "why not".

When you start to delve into our issues with chronic illnesses, chronic pain, and how many things we still have to school ourselves on, it is an endless and boundless "land" on which we stand. Even as many researchers, teams, advocates, non-profits, doctors, students, and schooling as we have to offer up the best explanations as to why some of us, especially female in gender, fall into the role of living with "autoimmune illnesses". I've often wondered "why" it is more of a "female" set of disorders, syndromes and illnesses, that do not effect the male population nearly as it does our women.
I've also pondered upon the reasons as to why my life's journey didn't take me further into the places of medicine. The medical field has been a fascination of mine since I was about 12 or 13 years old. I've told the tale often about living next door and growing up with a neighbor who was a nurse for our hospital forever and a day as it seemed. Our next door neighbor was the very BEST NURSE in her time on this planet. She is almost a "lost" soul now. I am NOT knocking nurses at all. There are many out there that do the job, BECAUSE THEY CARE! But, much like Teachers these days, between the worry of red tape paperwork, the number of horrid illnesses out there they must be so careful about, and now things even worse due to diseases out there we have no "medications" for... antibiotic resistant infections, like Ebola, and even forms of TB, Pneumonia, and others. It is a frightening era in nursing and the medical field for those that deal one on one with patients, body fluids, and everything that they could have just a tiny "mishap" and be one of those in the hospital, rather than working there.

Yet, this lady took me under her wing. She was a 2nd Mom to me all my life, from about the time I was 6 or 7, until I graduated and married at 17, she had me so engrossed in the passions of medicine and nursing that I had plans for many years to do just that. I wanted to go to school to be a nurse. This woman (I will call her Dee Ann) had 2 sons, and then decided to go to nursing school. At the time being an LVN was a good position. RN's of course were more of the "leaders" and supervisors, but being an LVN appealed to me because when I was old enough to become a "Candy Striper" I got "hands on" experience of watching babies be born, "autoclaving and sterilizing instruments", watching surgeries, caring for the newborns, and even making Christmas "stockings" that babies born on Christmas Day got to go home in a "stocking" Dee Ann and I made. She taught me how to sew, how to crochet, how to do just about everything at the hospital that she did. At the time, I was probably the only girl racking up hours and many hours at that as an "aide"... more like an advocate, or volunteer. But, I would spend my entire Summer Days 8 hours or more if they let me right beside Dee Ann, learning everything there was to becoming the very best nurse possible. There were no "disposable" instruments. Everything was sterilized, washed, and then packed in certain ways depending on what those instruments were for (an in what type of surgery and so forth), then wrapped in special wrapping and put into a very large "vat-like" autoclave. They were then in there, and steamed for a certain amount of time to completely finish the sterilizing process. Then they were labeled by date and what type of pack it was. I got to change diapers, take the newborns to their Mom's, hold them, feed them, watch them be born, and even would watch through the window of the Operating Room when they were performing surgery. Those were some of the best years of my younger life.
Why I had the notion to decide and marry so young, I don't know. Love is love... but hind sight is 20-20 as they say. I still at the age of almost 55 years old, "kick myself in the butt" at times wondering why I didn't go ahead to nursing school. Even married, I could have went. Then when I was working in the business office at a hospital for 6 years, again I had the opportunity to go to nursing school all paid for, and I passed the test and could have went. But, I had two kids in school at the time, and being away from a full time job for 2 years to go to school full time, was a bit of a daunting situation for me. Even my 2nd marriage was full of ups and downs, in the later years more downs than ups. I felt I had to "support" my kids and home first, thus I decided NOT to go to nursing school. Even after passing the test number 1 at the college there, and was a front runner, I declined. It was one of the most difficult decisions I ever made in my life. I did go to college at night for several years, completely a degree in accounting. Yet, accounting was just not in my mind as the passion I felt for the medical field.
And it still holds true today. If things were different, and I was not chronically ill, and now a bit OLD to decide to go off to college and become a nurse, I would go in a heart beat.

Alas, life takes us on many journey's. Often we may not understand the reasons why until later in our lives. Then there are times we never quite figure out why or why not in what we consider this daily walk of the "game of life"... all too often now it seems it is a game all right, but I feel as if I am on the losing team.

I can "see" the many "curves" in my river of flooded waters and then at times, just a trickle of water over the rocky bottoms of my life. I can blame it on love, on family, on Dad NOT pushing me enough, on the "time" in life when most women didn't think about college, and then on seeing that now I am chronically ill and probably would not be able to be the nurse I would want to be.

Any and all of the excuses in the Universe have never allowed me not to feel a bit bitter about not fulfilling that dream of destiny I had for myself and for the many I feel I could have helped.

I realize now, more than ever, I can "fulfill" a portion of that dream. All of my wide array of medical knowledge, and the years I've put in, along with what I have done to "self educate" and learn about my own illnesses has given me a light to the path of advocacy, of activism, and to help other through my own journey. I've been able to do some things that I helped to kind of fulfill a portion of that dream of "helping others".

As I ponder over all the things that flow and swirl around in my brain, I still live with the idea that many times I've put off something, thinking, well I still have time... to do this, that or the other... or things will be different or better... yet life is very short... as young people we so often can't see that... and as our years pass by so swiftly, we begin to live with "regrets" of why or why not, of how we did or did not, of all the things in life we now know are "missed opportunities". Of course I don't and will never "regret" the wonderful times in my life, and the things I have been able to do, accomplish and say that I did, like publish two books, and hopefully a 3rd this year... but still as mere humans there are so many things we "miss the boat" on... and when you become chronically ill, or arrive at this crossroads in your life where you can recall those times, it can be a mixture of happiness and also sadness for what you "might have" accomplished... never take a moment for granted... they all fly by so quickly.....





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