This is my favorite "Selfie of mine" In fact, I am going to have my stylist cut it like this hopefully this week, and will put the Burgundy color in it. My hair is blonde, so it does not "hold red" well... but within about 2 to 3 weeks of washing, it will be the "highlighted blondish red, which I love)
"Through my heart's work of writing, I share with you my complex journey a top the mountain, sliding down, crawling up, & living through the realms of Autoimmune Arthritic Illnesses. Taming "The Wolf" Thru each Day... One Step at a Time … Together We Are Learning to Survive. Please follow along, to New Beginnings - looking Thru the Window Pane of Pain in life where we shall find our journey leading us to - New Perspectives
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)
Monday, November 28, 2016
DAY #30! WEGO 30 DAY NOVEMBER 2016 HEALTH BLOG CHALLENGE!!! LAST DAY! REFLECTION, CONGRATULATIONS FOR 30 days of posts, & where do I feel I go from here?
WEGO HEALTH NOVEMBER 30TH, LAST DAY OF CHALLENGE!!! What this 30 days has taught me, and how I intend on moving past, and take what I have learned "with me"....
I am still not completely through with ALL of my November 30 day Challenge Blog Posts. I got almost all, but still lack about 6 or so, before I can say I did all of them.
I do appreciate WEGO HEALTH and the "challenges" they give us as advocates, activists, and those who want to make things "better", to change the way Health care works for us, for others and for the world.
I hope to go from this past 30 days and take a hard look at myself. I DO definitely do "my part" when it comes to Advocacy, Activism, and being an Ambassador.... whichever you choose to define it, ALL mean you STEP UP to the plate, take your very best swing, and hope to hit the "ball" right out of the park!
I know that MANY have made that possible with our Congress, with our States Governments, and even around the globe. Each day is a new light, new action when it comes to the way everyone views how "the health care" system should be.
WE have become #1 as, patients, BUT moreover as "activists"... able to give our story out, and know We DID make a difference.
*I've always been the type of person who likes "order".... things to be put away, no clutter, no mess, everything where it should be.. and up until the Lupus, RA, Sjogrens's and LIFE HIT me, I could do that,
A dear friend of mine, taught me a lesson, that was so very simple, YET it totally CHANGED the way I try and do things now.
I was in the car with my friend, and trying to get a lighter of mine to work. I had probably been to stubborn to stop and get another one, or would forget, so I was trying and trying and it just was "finished"... no more "flame" to come out of it... He asked me to "hand it to him"... so I did, and as soon as I handed it to him, it went flying by my face, out the car window (we were at a Stop Sign), and into a "field" by the roadway.
At 1st I was confused, then I wanted to laugh, and then it totally HIT ME! Not literally, but in a "life changing way". When something whether as "small" as a lighter, or as large as an "elephant in the room" is giving you problems, not working, and you are just getting more and more upset, frustrated, and plain down right MAD about it, "throw it out".... it is NOT WORTH trying to "fix" something, that is NOT fixable. Here I was stressing over a 99 cent light, when all I needed to do is pitch it out the window, stop and get a new one, or he happened to have had an extra one he gave me, and go on with life!!!
LIFE, as I have witnessed in the past 11 years, but MORE in the last 3 years or so, is TOO SHORT, to precious, TOO "there one day and gone the next" to allow yourself to be "worried" over "what is NOT working"...and go onto the next phase, where something IS working...
We can "Duct Tape" a sole on our favorite shoe, or "mend a hole in a sock. We can choose to drive ourselves nuts over something so silly as the news, a TV show, and all we need to do is "turn the channel"..
As humans, I know for myself, I've wasted too much of my life, "watching" the channel that I did not like, when all I had to do is change it.
Decisions, even where to go out to eat for me, are always "stressful".... everything in my life, I "question" up, down and sideways, I always "sleep on it" before I make a change, buy something, make a decision that ultimately could change my entire life, well what is left of it...
Yet, I've learned in the past year that "letting go"... of what I cannot do a thing about, and trying to "mend" what I can, or if it is TOO stressful, pitch it out the window, and drive away, Tomorrow is still will NOT work, but your mind WILL!
WEGO's Annual Blog for November Challenge did just that for me. I find myself "throwing out" what does not work, and moving on to the greater thing right in front of me. Making "right" what I can, and walking away from what I cannot do a thing about....
WEGO Health Blog 2016 November 29th Challenge - Have I checked out some others bloggers and #HAWMC Fellow bloggers -Choose a few I liked and repost to my Blog!
This is a very difficult choice to make because EVERYONE'S are GREAT! Information, giving of "self" in an unselfish way, bearing your own health burden's and life challenges for ALL to see - - - - - - - - -
I am always so thrilled to participate and interact with ALL of the people there. ALL of you ROCK!!!
So, it is a "trying" time to make sure I give "back" to those who gave me so much, either through their own blog posts, or their comments about mine! I've learned a great deal about illnesses, about other bloggers, about how there are those that do CARE, and they "give of themselves" often "Bearing their Souls" about life, pain, chronic illnesses, being a caretaker, and the REST of what WEGO Health Helps to Teach us!
So, Here are a few of my re-posts:
Day #4 What Superpower would you like to have: Kristen's re-post form the FB Page :
Kristen WEGO - My superpower would be patience! Yes I count that as a superpower. Challenging yoga class this morning and a challenging first time working with clay this afternoon. Finding myself frustrated and pushing for perfection but remembering to have patience and to accept where I'm at 👌🏼My vase may be crap but at least I'm rockin my awesome Bipolar tee from @GabeHoward to help #Stompstigma
Day #1 on Julie Cerrone's - FB Link - https://www.facebook.com/itsjustabaddaynotlife/
Her Blog Repost I liked is at:
Day #29 - "What I Wished I had known Before:
Day #4 by one her blog (re-post) Blog Name - Inflamed and Untamed!
Day #11 - Your Top Ten - From Blog "Journeying Beyond Breast Cancer" Re-Post
These are just a very few that touched me in one way or the other - I could name almost everyone I got to read, and will be reading over the next weeks, so I can really get to know so many of these great people and awesome Bloggers!!!!!! Rhia
"GIVING TUESDAY" A TIME TO GIVE BACK" TO SO MANY THAT HELP US IN ALL KINDS OF WAYS! November 29th, 2016
"GIVING TUESDAY" A TIME TO GIVE BACK" TO SO MANY THAT HELP US IN ALL KINDS OF WAYS! November 29th, 2016
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at November 28, 2016 No comments:
Labels: #arthritis foundation, #EndALZ, #givingtuesday november 29th, American Chronic Pain Association, gifts to non-profits, giving back to community, givingtuesday, Lupus Foundation, WEGO HEALTH
Sunday, November 27, 2016
Saturday WEGO Blog challenge - November 19th - How to Pull yourself out of a "rut" when things seem to just not fall in place? Health, skills, writing tools, life. being sick, other problems
WEGO HEALTH BLOG CHALLENGE FOR SATURDAY NOVEMBER #19! YES, I AM BEHIND!
I believe I've been pulling myself out of a rut so many years, I have to find MANY WAYS to try and continue to move on day to day, week to week, month to month... and hope the years continue to come also.
I used to gripe about birthdays, now that I've been so chronically ill, I am THANKFUL for them when they happen.
I have to admit, one of my "ways" I remain half "sane" is to talk to myself! I know that sounds more nuts than I will admit, BUT, I've found if I "talk" to myself, through a bad day, lousy situation, too many irons in the fire, I tend to be able to "move forward" past whatever is giving me too much hell at that time.
My advocacy work helps, and the blogging, and friends on Facebook (those that Truly LISTEN) that also gives me a way to purge whatever may be going on. There is ONE HUGE problem with purging online, especially Facebook! "Some" people that may not know why I write some of what I do, or they take is ALL LITERALLY, then I have "issues" to deal with. The true friends that know what is going on with my life, AND they know that my writing, is usually my #1 (first) to getting rid of whatever is eating me up inside.
I am the type of person, who can be totally upset, distraught, and appearing as if I am going to come apart a the seams, BUT once I can "say" it, whether Social Media, my blog, or talking to myself or my two fur-kids, it is gone. I don't harbor over problems that are in the past. Life is worth trying not to feel frustrated, upset and alone. As the years go on, I really have come to realize we are only here for a brief time, and allowing STUFF that we usually cannot do a thing about disrupt even an hour of a day, is an hour lost, that I can never get back.
So, I FUSS about it, throw it out with the bathwater, LOL, and for me it is usually over and done. You could ask me in a couple of hours what I was bummed about, and I probably will say honestly, I don't recall.
Tuesday, November 22, 2016
Monday WEGO Health Blog Challenge for 21st of November - "Motivation Monday - A "Life slogan? What helps to make the experience so special?"
Monday, November 21,2016 WEGO BLOG CHALLENGE - "Motivation Monday" A Life Slogan that gets Me Through The days, that something are less than expected to be...
As I've always said in life, "IF you want the job done, and done well, you must dig your heels in, get your hands dirty, and stains on those "white jeans" and do that job yourself.
My "mantra" has not changed all that much, other than the fact like this past 10 days, for 2 weeks I WAY OVERDID EVERYTHING!! Cutting down tree limbs, cleaning up my yard, re-potting plants, throwing out an old loveseat I had to literally take apart to get it out of my door, then dragging a heavy 10x 12 area rug out so I can replace it, re-arranging furniture, brought ALL of my very heavy houseplants in just before the cold got too bad for them, and I am talking about a palm 8 foot tall, my fern is about 12 foot around at least, my ginger plant is over 8 foot tall, and several more not quite as heavy but still burdensome to get into the house, after having to clean them all up, clean the pots, re-pot some, pulled one air conditioner unit out of one window, that I needed to throw away, and it was the small one. The large one is on the fritz and I have to get it out of that window, but I think my neighbor may have to help with that one...
I have TWO BROKEN WINDOW PANES, well I really have 4, these old glasses after 50 years are so brittle, but I am replacing them with plexiglass so for the most part I can do it myself, rather than have to be concerned about holding a piece of glass in place, while you try to place the push pins in, then get the glazing around it... so I am going to opt for plexiglass for now, and then worry about something else later... and I've baked some, and that is not including the running around errands, the regular house work, and my list goes on and on... thus I KNOW I did this to myself, with the assistance of Lupus.
But, even as my PA told me yesterday, she "understands".... she said I could "scold" you BUT, I DO THE SAME THING! I can't afford someone to cut tree limbs, and shrubs, or do lawn work, and lots of things that need to be done, she said there is just ME, and I have to do it come heck or high water... but THEN she said BEFORE MY CERVICAL SPINE IS WORSE THAT IT ALREADY IS, I'VE HURT IT TWICE AT LEAST WHEN MOM WAS SO SICK. Then I hurt my lower back here doing all of the stuff at home... to the point that NONE of my pain medications would touch it, BUT corticosteroids, are about the only thing that will get rid of this "type of pain"... it works on my other pain fine, but when it comes to "inflammatory" pain, all of the regular pain meds in the world will not get rid of it...
So, my "life's talk" to me is still the same, for the most part, "If I want it done correctly, and when I WANT IT DONE(like NOW) I must dig my heels in, hands dirty, clothes dirty, and "remember" to take it either slower, or try and get "some help" for some of this stuff that now is beyond my body's capabilities...
Sunday, November 20, 2016
Friday - WEGO Bloggers Challenge - A "Cliche'" I hear that just bugs me, and some way to make it "reclaimed" and sound much like they "mean it"...
WEGO BLOG CHALLENGE FRIDAY 18TH, 2016 - "CLICHE'S YOU HEAR about you, your health, and the "one" or ones that really get under your skin and how you may turn those around...
I realize "we" as chronic patients have many "cliches'" we hear that makes us want to pull our hair out at times.. Some worse than others, from "you are "sick" you should not be doing that", or "if you would "eat, drink, exercise,rest, sleep etc (right), you would "feel" better, or I just cannot see why you "think" you feel so bad, you don't look like you feel all that bad, "GRRRR".... or rest for the day or two, you need it. Let "a friend, sister,brother, and so on, "do that for you". I saw you were in the doctors office or hospital, have you been sick AGAIN? Or "panicky" I "heard" so and so say on Facebook, they saw you went to Urgent Care (now this is 3 or 4 days ago), I was worried, are you okay? Call me if you "need anything".... and that list just goes on and on and on... we have heard them all, and then some... for sure.
"How are you doing?" And before I say anything, I guess I must say I catch my own self "asking that same question at times to others".
This very one above is probably one phrase that tends to get under our skin the most, and one we hear the most... "How are you doing", you are looking just great"!
Well, my answer to that has become "If you have a few HOURS to sit down over a cup or several cups of coffee, I can TELL YOU ALL ABOUT HOW I FEEL AND HOW I AM.... not really "screaming" but wanting to as we "grind our teeth, under our breath!
This business about just because someone "looks good" or maybe does not look so great at one time or the other, may not have one thing to do with our illnesses OR it could have everything to do with them. So, I truly have just began to say, unless you have an hour or more, or would like to sit down for a day, then there is NO way, I could explain it all, within a few minutes standing here in the market.
I know it sounds harsh, but 1st of all, it gets "their attention", because they are expecting you to say , "I'm okay"...or Things are not bad... yet you come back with a phrase that throws off what they thought you would say. It also makes them stop and think, well, maybe just because he/she looks a "certain way" does not mean they are not well or well... maybe other things in life are going on besides being ill. Maybe something is wrong with a friend, or at your home, or plumbing, or your car, and so forth. We may not "feel" all that bad, but have other things causing you grief, in fact more grief that if we were ill. I know when I am already not feeling all that well, and then something like a car problem, something as small as the tires needing air, or feeling like I am on overwhelm and cannot get everything accomplished I need to, will cause my stress level to rise, and thus my "feelings of illness could be worse" than if things were going more "level" in life.
I know when my Mom got so ill at the first of the year, and I was ill myself, in need of surgeries, trying to keep up my home, my puppies, her home, her medications, my medications, cleaning, cooking, being there when she needed something, going to the market, taking her or me to the doctor, making sure I was there for the medical staff or later the Hospice staff to come over. Basically, being 10 people all at once, postponing my own surgeries, doctors, and tests, so I could tend to her, I know I looked horrible most of the time. I did "feel" like makeup, dressing up, and even then people would ask "how are you doing"? Oh Gosh, I wanted to scream, 'HOW DO YOU THINK I AM DOING"?
LORD BLESS THOSE WHO TRULY DO NOT "GET IT"... they have NOT lived it, so they just don't get it....
Shout Out Tuesday! (I missed!) sharing the love to those Health Activists that Truly give me a "hand and foot up" when I need it the most! (TUESDAY 15th ,2016)
TUESDAY 15TH - WEGO BLOGGERS ANNUAL EVENT - shout out Tuesday to some of my great people in the HA and friends world!
I must thank Laura Keivel with the Arthritis Foundation. She has helped me and continues to help me get through some of the very tough times these illnesses , and life can throw us in. From all of my own health issues, to Jim's accident while I was at the Summit with them in DC in 2014, Laura has been right there, helping me in any way she can as a mentor, a friend, and giving me advice to make me feel like I can still "charge through these things" and bring my activism and writing back on tract. Laura, you are just a true angel.
Barby Ingle and I got to know one another through chronic pain, and also with her writing, her testimony and advocacy skills, and also someone who can be so ill and in the hospital yet bounce back and be on the road again, never allowing the pain and chronic illness steal away her "show" through her goals, Barbe Ingle, you are an inspiration.
Kerri Fabert I met during my 1st Summit in 2014, She lives about a bit over an hour away from me, and has Sjogren's that now is effecting her sight even worse than ever. Yet, again, she is a loving wife, Mom, and works in the medical field, as well as does the Jingle Bell Run, and other events to help get the word out about autoimmune illnesses and yet how we can ALL can contribute in one way or the other, Kerri THANK YOU FOR ALL OF YOUR KIND WORDS and being a role model in so many ways, activism, being a fantastic Mom, Wife, and friend.
WEGO Health has SEVERAL INCREDIBLE PEOPLE, that always are there to answer my questions, and listen when I need an ear to "bend". Susan Mees, Danielle Schroth, who is Community director and also works with Cure Ckick, helps to make Cure Click something that everyone can do to help spread the word about Clinical Trials. I am so proud to be a part of Cure Click!
Pam Gill, from the more "local" part of the Arthritis Foundation, I met at the 2014 Summit, is just a sweetheart. She is a huge advisor for our District in this Central portion of Texas, and keeps everyone up and going' excited about all of the activities, from the National, to the State and Local parts of the AF. Thanks Pam for being a great friend and even though we don't speak much, I always know I can email you for guidance and help.
KRISTEN AT WEGO is such an upbeat and sweet young woman! She is always giving up hope, encouragement, and reasons why she feels "we" are what makes "WEGO" work! - "the patients"!
Gosh, then there is Laurel, Jackie, and so many at WEGO Health, that I am so thrilled to be in touch with from time to time. Everyone At WEGO are just wonderful people, and I feel blessed to be a part of the patient team.
There are so many more of you that give me hope, lift me up, and give me the strength to move on, even when I feel I am not make enough of a contribution,
Clarissa Shepard who has a huge following on her Facebook group about FM, and the illnesses that go along with them. Clarissa is also a dear sweet lady and friend, who is there when you need her, and works herself day and night keeping up with all of the information about FM, and the other illnesses that go along with that fight, Much like other autoimmune illnesses, Fibromyalgia, is yet another one of those mystery illnesses that we still have a very long way to go before we understand the issues surrounding this horrid "disease". I appreciate you Clarissa and thank you for your hard work and friendship.
This is hard to do because I know I am missing many... but know ALL of you are in my heart, and I am so elated and feel honored to know each of you in all ways....
Friday, November 18, 2016
Throwback Thursday! WEGO BLOG #HAWMC a "phost" from the past? (Christmas Eve 2014)
WEGO HEALTH Bloggers Challenge for 2016 - 'Throwback Thursday" One of my blogs from the past and why I picked it to go back and "share" it again.
Many of you know how "messed, mixed, and flat horrid most of my year in 2014 was. This post explains a great deal of what went on, and why 2014 had an incredible start, I got to go to Washington DC for the Arthritis Foundations Annual Summit and although I had been down with a severe Lupus Flare, I had been to our Urgent Care the Friday before I was to leave and the doctor who knew a great deal about Lupus, since he suffers from it also, gave me enough corticosteroids for a horse I think (LOL, well not quite that much but enough to make me feel like I was brand new by the morning at 4AM I left for DFW Airport, for the flight to DC!
Little did I know what would happen that last day of the Summit March 26th, 2014. A horrendous nightmare of an event, that forevermore changed my entire life. There are days it still effects me, even now. So, here is the post from then:
http://www.autoimmunearthriticsystemiclife.com/2014/12/christmas-eve-2014.htmlSince the post is pretty long, rather than try to post all of it here, I decided to just post the URL (link) to it. That was a year of hell to say the least, then 2015, was not much better... I DID get the honor of being a "Platinum Ambassador" in 2015 BUT, did not get to attend the Summit that March, for reasons why in 2014, along with other issues that happened due to that "eventful" day.
Then, thinking I would "start new" for 2016, only to become, someone without their own caretaker, that became a "caretaker" for my own Mom, who up until January 2016, had been in pretty good health. Little did we know what awaited us the first 6 months of this year...
at November 18, 2016 No comments:
Labels: #HAWMC, AF 2016, Arthritis Foundation, dealing with horrible illnesses, dealing with no caretaker, lewy bodies dementia, Losing my Mom, Lupus, March 26th 2014, RA, Summit 2014, WEGO #HAWMC
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.
Tuesday, November 15, 2016
WEGO Bloggers Challenge for Monday November 14th 2016 - Monday, Monday.... "Purging what "burns me out", makes me upset, gets me down and out" so I can "deal" with it on Tuesday
This is an easy one. TOO MANY IRONS IN THE FIRE AND TRYING TO KEEP THEM ALL HOT AND READY TO GO!
Trying to do 100 things at once, being ALL to everyone and not able to just say ENOUGH, I NEED HELP AND I NEED A BREAK FROM THE INSANITY, THE PAIN, I NEED THE SURGERIES, AND I WANT MY LIFE BACK WHERE I CAN DO MY WRITING, MY ADVOCACY AND BE READY TO HIT WASHINGTON DC IN MARCH, FOR THE AF SUMMIT READY TO "ROAR" AT ARE "NEW" CONGRESS!Since my Mom getting so ill so quickly, and needing my help 24/365/7, and then passing away so suddenly this past June, my life has turned into a disaster beyond anything I could have ever imagined. Being an only child made that even more difficult because it was ME and only myself to do everything. When you are already chronically ill yourself and your own "caretaker" of 13 years suddenly has walked out a year before, I was left to try and hold on taking care of her, myself, and ALL that has gone with that, and then after she passed away, I am still reeiing from "wanting to get back to having some of my life, having surgeries I need, writing and doing my advocacy work.
I thought once "most was settled" just before the funeral, then just after, some type of somewhat "normal" would begin to come to fruition.
Boy, what a "slap" in the face I got, with paperwork, and all that STILL HAS TO BE DONE, even though she is no longer with us, I miss her dearly, and although I "thought" we had everything in order long ago, I found out that somehow things got "changed" that I was not made aware of. That has caused hard feelings, and those things were the very last I wanted for myself and my two grown children.
So, hopefully by "telling" this once again, and often what my writing can be for, is to "purge" some of what is stressing me so badly, and help to get my surgery on my neck done at least before the end of the year, and allow me to have back some of that normality I so need in my life.
I LOVE my Mom, and I MISS HER, but at times I am so UPSET AT HER, for "changing" things that did just what I told her it would leave harsh feelings for those left here to continue on.
Monday, November 14, 2016
WEGO Bloggers Challenge for Sunday November 13th - "One of the "BEST THINGS THAT Happened this past week?"
November 13th, 2016 WEGO Health Bloggers Challenge for Friday - "Finding the "good" from this past week"
I seem to not have "many good things" as of this past about a year. So, when those time come along, they are certainly not taken for granted, and I try and hold on to that good memory, so I can get through all of the circumstances of pain, burn out, and pure life's grief it can give to us....
I have a great deal more to do, but I got some of that cut up and put out for the trash collectors this morning, Now the larger limbs I have left I have to get cut down small enough so they will pick those up.
I also made a decision (FINALLY) to order a new area rug for my living room and have my eye on a sofa that will be high enough ff the ground the dogs will no longer be able to have their "peeing contests" when they get mad, and soil the carpet OR the sofa.
I am hurting from head to toe, I am hoping to have my neck surgery done in December, and try to help stop this pain. It is another reason that I am not keeping up with my blogging and writing, I am in so much pain, on my right side, shoulders,hand,wrists, swelling, now a lump at my thumb, and I am hoping that they put me on Xeljanz, because the MTX for one is NOT working, and for 2, I am having side effects again from it...
So, there is what I considered "good bits and pieces" of my week, last week.
WEGO Bloggers Challenge for Saturday 12th - Time to "get real" with your doctor
Saturday Day 12, 2016 - WEGO HEALTH'S BLOGGER'S CHALLENGE - WHAT DO YOU REALLY WANT TO TELL SOME OF YOUR DOCTOR'S AND DON'T HOLD BACK!
Well for one, I am sick and tired of doctors thinking that just because I patient may do research on their illness(es) or look things up, I cannot fathom a doctor getting upset or calling a patient a "moron", Layman, and telling them "you do not know what you are talking about".
I agree there is a OVER ABUNDANCE of some really ridiculous information online for everything! Not just the medical field, but just about anything you want to search for.
One has to learn how to "think" about what you read or hear when it is NOT a specialist, and try to weed out what really is silly, or does not apply to your case.
Plus for myself, when I go into my doctors offices, and ask questions or tell them about something I've read online, often times "most" of my research, is usually almost right on target. Not always, and I have one physician that LOVES and "educated patient".
But, one is a complete jack-ass to put it like it is, he ignores anything I have to say, he tells me I am basically stupid, and leave the "doctoring up to those who do have the "knwledge and education" to do the "medical work".
I SO would love to tell him, that I have been to "some so-called" doctors, that not being narsaccist but I KNE more than they did about some things. When you are chronically ill, many of us DO KNOW more about our conditions than doctors. WE KNOW our bodies, we know what feels right and what feels wrong. We understand the articles, even bloggers posts we read, and they also know many things our physicians never are even taught, especially about autoimmune diseases. My own pain doctor will admit, that I know more than many medical workers, including doctors, nurses, PA's, and NP's when it comes to my own conditions, because I do research things, I do decipher what is "not right" and what may be deemed something critical in my situation.
I would love to tell every doctor I have been to and others, that they NEED to be EDUCATED MORE on autoimmune and rare illnesses, because in many cases now, WHAT WAS RARE, is NOT that rare anymore.
"THAT IS MY STORY AND I AM STICKING TO IT!"
Friday, November 11, 2016
WEGO Health Day 11 - Bloggers Challenge a "TOP TEN "must follow" Lists From Facebook Twitter, and Blogs....
This one is kind of a mixed up "bunch" for me. I have those that follow me on Facebook, but they may rather follow my blog posts, or I know I have a good deal of following on Twitter. I really never have "kept up" with the number that come back again and again, but do know those that comment and read often, because they either give me a thumbs up, mention my "Newspaper" yes, I do have a Daily Newspaper I put out, FOR Chronic Pain, Chronic Illnesses and Dementia. I send it out daily on Twitter, Linkedin, FB, plus there is a follow page on my blog, in case you want to joint my daily Newspaper. I will say the newspaper "seems" to be giving people a great deal of information, because the articles are from reliable sources for the most part, I have also "tailored" it for those with the Autoimmune, Chronic Illnesses, such as Diabetes, Heart problems, and so forth, plus Chronic Pain, and all that comes with the controversy on it now, especially on our medications for chronic pain. Plus I added "Dementia/Alzheimer's" after my Mom passed away last June 9th, due to the fact I "feel" that it may run in our family, on Mom's side. Both of my Grandparents had it, but my Grandfather, had full blown very difficult Alzheimer's. Mom's turned into an aggressive, what we feel was the "Lewy Bodies" Dementia, that I watched take a woman of 78 years old, who could still drive, clean her home, and cook, etc... to within 4 months go to being bedridden, in diapers, could not even remember her home, who she was, and mostly had no memory most of the time of who I was. Within 2 more months it took her life. One of the most difficult times in my life, and something that has "changed" me forever, in SO many ways.... some good for the most part, and some may say things that may not be so good... but I know to just roll with the flow of it all, and NEVER take ONE MOMENT of life for granted.
So, Here is kind of a "mixed list" of blogs, Facebook friends, Twitter followers, and those that comment, and are "followers" in one way or the other....
Facebook Followers and I follow them also
Venetia Shafer- FB
Amanda Matheny - FB
So, Here is kind of a "mixed list" of blogs, Facebook friends, Twitter followers, and those that comment, and are "followers" in one way or the other....
Facebook Followers and I follow them also
Venetia Shafer- FB
Amanda Matheny - FB
Cynthia Carr Czaplicki - FB and she really is wonderful about making comments and reading, plus she is a relatively new friend there.
Betty Walters - FB
Raymond Veditz - FB
Judith Flanagan - FB
Barby Ingle - FB
Nancy Hershalman Gipson - FB
Jean Marie Ely Breaux - FB
Jane Gill-Wilson - FB
Blogs I follow (and love to tell others about)
Arthritis Foundation (I know it is a website but they have a blog also)
The Hurt Blogger
Rheumatoid Arthritis Guy
All Flared Up
Little Miss Autoimmune
Barby Ingle (all of her writing, articles, books & more)
Float Like a Buttahfly
Not Standing Still Disease
An Autoimmune Arthritic Systemic Life (of course my own ;)
WEGO Health's Blog, & ALL of the Help. Challenges (good kind) and assistance they give to all of us!! (Website in general)
Told You I Was Sick (Also great blog/writer!)
A Chronic Voice
And there are so many more, that either follow me, or we follow one another on Facebook, Twitter,Linkedin, Blogs, and even emails. There are many URL's that truly "help and guide me" at times. US Pain Foundation, and International Pain Organization, Med-Page and any "medical newsletters I get and save. they are also a wealth of information.
So, to those who I may have "missed" here, I apologize, because I do see and read you, your posts, and know much about your lives and what all of you are going through.
So, Here are my lists!
and by the way, here is the link to my newspaper and the name of it!
Life Chronic Pain & Autoimmune Systemic Diseases & Dementia®
"All aspects of autoimmune & chronic pain illnesses, fighting to survive & grow past them"
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