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.

#HAWMC

I also know some things like hanging a ceiling fan now, and other things that require me to put my arms up and hold things up very long, I am going to have to get help with some of those, and the heavy stuff... after all of the lifting, pulling, pushing, etc... every joint, every bone, every muscle hurt, I even thought I had broken ribs it hurt so much to breathe... but ALL OF ME WAS SORE, EXTREMELY SORE, I had a horrid Lupus Migraine for days and days, the night sweats (cold ones), fever off and on.... my joints in my hands and thumbs are now so bad, my Rheumy will not believe how bad they got within 3 months or so...

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...

That is what gets me through my days, that and my two fur kids, even though sometimes they grate my last inkling of nerve I have... and knowing life goes on...so I can get up and DO SOMETHING, OR I CAN SIT AROUND, HURT, MOAN, GROAN AND FEEL SORRY FOR MYSELF. (Which for me is NOT what I want, nor need to do.)

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....


#HAWMC

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