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....

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.html

Since 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...

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.

#HAWMC

WEGO HEALTH

 

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. 

#HAWMC 

 

 

 

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....

#HAWMC

Having the "most" of the past 5 days of this week, where I was able enough to get some things done in the house, like moving some furniture, dusting, and doing that "deeper" cleaning, even washing the drapes (although I don't have them back up yet) & also being able to do some limb cutting from my trees that dearly need it. The drought here several years back did a number on them and almost killed them. So, they needed to be pruned back really far before winter col, cold hits, so they will have a change to put some "good" new growth on, and not look so "bare" in the inner parts of the tree.

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!"


#HAWMC

#HAWMC@wegohealth

WEGO Health Day 11 - Bloggers Challenge a "TOP TEN "must follow" Lists From Facebook Twitter, and Blogs....

This one is kind of a mixed up "bunch" for me. I have those that follow me on Facebook, but they may rather follow my blog posts, or I know I have a good deal of following on Twitter. I really never have "kept up" with the number that come back again and again, but do know those that comment and read often, because they either give me a thumbs up, mention my "Newspaper" yes, I do have a Daily Newspaper I put out, FOR Chronic Pain, Chronic Illnesses and Dementia. I send it out daily on Twitter, Linkedin, FB, plus there is a follow page on my blog, in case you want to joint my daily Newspaper. I will say the newspaper "seems" to be giving people a great deal of information, because the articles are from reliable sources for the most part, I have also "tailored" it for those with the Autoimmune, Chronic Illnesses, such as Diabetes, Heart problems, and so forth, plus Chronic Pain, and all that comes with the controversy on it now, especially on our medications for chronic pain. Plus I added "Dementia/Alzheimer's" after my Mom passed away last June 9th, due to the fact I "feel" that it may run in our family, on Mom's side. Both of my Grandparents had it, but my Grandfather, had full blown very difficult Alzheimer's. Mom's turned into an aggressive, what we feel was the "Lewy Bodies" Dementia, that I watched take a woman of 78 years old, who could still drive, clean her home, and cook, etc... to within 4 months go to being bedridden, in diapers, could not even remember her home, who she was, and mostly had no memory most of the time of who I was. Within 2 more months it took her life. One of the most difficult times in my life, and something that has "changed" me forever, in SO many ways.... some good for the most part, and some may say things that may not be so good... but I know to just roll with the flow of it all, and NEVER take ONE MOMENT of life for granted.

So, Here is kind of a "mixed list" of blogs, Facebook friends, Twitter followers, and those that comment, and are "followers" in one way or the other....

Facebook Followers and I follow them also

Denise 

Venetia Shafer- FB

Amanda Matheny - FB

Cynthia Carr Czaplicki - FB and she really is wonderful about making comments and reading, plus she is a relatively new friend there. 

Betty Walters - FB

Raymond Veditz - FB

Judith Flanagan  - FB

Barby Ingle - FB

Nancy Hershalman Gipson - FB

Jean Marie Ely Breaux - FB

Jane Gill-Wilson  - FB

Blogs I follow (and love to tell others about)

Arthritis Foundation (I know it is a website but they have a blog also)

The Hurt Blogger

Rheumatoid Arthritis Guy

All Flared Up

Little Miss Autoimmune

Barby Ingle (all of her writing, articles, books & more)

Float Like a Buttahfly

Not Standing Still Disease

An Autoimmune Arthritic Systemic Life (of course my own  ;)

WEGO Health's Blog, & ALL of the Help. Challenges (good kind) and assistance they give to all of us!! (Website in general)

Creaky Joints

Twitter Followers

JoJo @SuzieMay08

Told You I Was Sick (Also great blog/writer!)

PajamaDaze

Arthritis Foundation

WEGO Health

Cure Click

Cluster Shade

Patient Power

Elizabeth@themamaspace

A Chronic Voice

 

And there are so many more, that either follow me, or we follow one another on Facebook, Twitter,Linkedin, Blogs, and even emails. There are many URL's that truly "help and guide me" at times.  US Pain Foundation, and International Pain Organization, Med-Page and any "medical newsletters I get and save. they are also a wealth of information.

So, to those who I may have "missed" here, I apologize, because I do see and read you, your posts, and know much about your lives and what all of you are going through.

 

So, Here are my lists!

 

#HAWMC  

 

 

 

 

and by the way, here is the link to my newspaper and the name of it!

http://news.autoimmunearthriticsystemiclife.com/#!headlines

Life Chronic Pain & Autoimmune Systemic Diseases & Dementia®

"All aspects of autoimmune & chronic pain illnesses, fighting to survive & grow past them"