Lupus and Sun Advice

 

https://lupus.net/living/sun-sensitivity?utm_confid=2ace9515f1b02bee3772369cdfad53445b38225ccdee5abb2e0c734920995634&utm_term=Article_1_Button&utm_source=Newsletter&utm_medium=email&utm_content=Tips%20for%20Having%20Fun%20in%20the%20Sun%20%28Safely%29%20With%20Lupus%20%F0%9F%8C%9E&utm_campaign=Lupus%20net-newsletter-8%2F2%2F2023&fbclid=IwAR0njedfHG_A3MleagvoXtuHoDc9BQZcd3Kxe7xm0VQtwbSKgBGbPiJj9k8

MY NEW BOOK JUST WENT TO BE PUBLISHED!!!

This is not the cover...I changed it!

I'M SO THRILLED MY FIRST EDITION OF MY BOOK...MY OWN JOURNEY THROUGH LUPUS, RA, SJOGREN'S AND SO MUCH MORE!!! 

I'LL POST WHEN IT IS READY!!!

Lupus and Heart Complications....

 

https://lupus.net/living/heart-complication?utm_confid=2ace9515f1b02bee3772369cdfad53445b38225ccdee5abb2e0c734920995634&utm_term=Article_2_Button&utm_source=Newsletter&utm_medium=email&utm_content=5%20Great%20Date%20Night%20Ideas%20For%20Lupus%20Warriors%20%F0%9F%92%98&utm_campaign=Lupus%20net-newsletter-7%2F26%2F2023

New Book coming out soon! My Journey with Autoimmune Diseases ..Lupus , RA and other issues with these conditions

 
I've been working of this for a while. The 1st edition has been ready, but I made some changes. 

I decided this needed to be a least 2 volumes..

The "Title" stands as it was..
"It's Not me! It's the Disease!...Stupid!

World Sjogren's ...July ...and July 23rd was the main day!

This is a horrid disease (AI)! Sjogrens is not just dry eyes or dry mouth. It's much more complex than that. I had my teeth begin breaking off at the gum line. Sjogrens had destroyed my teeth. I had to have the rest extracted and have Dentures.

 A few days late but we wanted to acknowledge World Sjogren's that was celebrated on July 23. To learn more about Sjogren's disease go to: https://www.aiarthritis.org/sjogrens #sjogrenssyndrome #sjogrensdisease #aiarthritis

All reactions:

55

Our Medical Spaces are "Diseased" by many Doctors, ""Big Pharma", the Government... & so much more

 ******I have not posted this yet...but it seems appropriate now....

THIS IS EXACTLY WHAT I NEEDED TO SAY!!!
AND IT IS NOT A POEM IT IS THE FLIPPIN' TRUTH!!!!********

Diseased… this entire damned mess...IS Diseased!!!

All too often these days…I see more “ill” people than healthy.
It’s not due to status, married young, old, divorced or wealthy.

It baffles me more each time my heart beats; those whom should take care of us…
They’ve turned their backs on thousands.. & how some act is a total disgust.

We are quickly becoming a “society” that has a great deal of distain on how this nation is ran.
Many of us are so through with the mess with doctor’s, medications, tests…we have as patients & caretakers we've taken care into our hands.

My thoughts are that we are being given so many different things from “Big Pharma”; that we know is definitely tied into our federal government "IF" I can say “our government” with a straight face.
The FDA and DEA are right there to make sure who lines their pockets and tries to win this race.

Our insurance, groceries, gas, and EVERYTHING is so expensive…and we continue to inundate our lands, waters, air with a “fiery end”…
We see it, hear it each & every day…weather patterns are insane. Viruses, more and more illnesses the OFTEN can’t be properly diagnosed…we are overwhelmed to the brim.

A great example is this “bone growth stimulator I’m wearing due to a collarbone fracture (also a shoulder blade and 2 ribs) a YEAR ago July 4th 2023. I noticed it is a “wave length” the same as my mic.
I can’t get my microphone near it when I’m having to wear it right.

If it’s causing that, what is it really doing to my bones and my body? Then when you include a cost of $5,000.00 plus. It was insane. My insurance pays 80%. Which left me at $800.00 out of pocket. When you are “through” with it; it can’t be used again. SO if you have another break, surgery and so forth..this thing is USELESS! Oddly enough, I found out the company online. I called customer service, explained my situation, they waved my portion.

What irked me that that the REP that brought it out here knew that. I told him and he said did you find out? I told flat old him I used “Google” and the company’s website.

He was shocked & after a moment, he said well I was going to mention that to you.. totally smelling like B/S …right???!!😠😡😠

Why would he be upset over whether I have to pay the co-pay or not? Ten to one HE gets a commission from that money he thought I would pay in.

Why else when he saw my situation NOT offer to see if I qualify for assistance? This is the TYPE OF SITUATION... That I feel is "medical gaslighting". Believe me MANY of us are being used by "gaslighting" and we are not even aware of just HOW WRONG it is!

It's happened to me at least a handful of times; without me truly understanding what the term "gaslighting" even meant. I had actually seen it used in a "good manner".

Once I went through the last time I was medically gaslighted, I knew what was happening with my doctors office was absolutely against the OATH and regulations doctors have to do or not do for patients.

Defeated...Am I???

 Defeated… am I?

Trouble is I have so many reasons they don’t..

My perception of this horrid world..is not what I want.

As I’ve sat back….to heal & hang…we’ve became a mere number on a wall…

This world… this nation… is so much more than just a hot mess… we should all be appalled at how we as the PEOPLE

that feel we must beg and crawl.

It’s not just the “disease” of the physical realm.

Lunatics for the most part have taken over the helm.

I’m burned out, I am fed up, I shall NOT stand for all 

that is in this ridiculous, insanity of a world.

I’ve waded, crawled, begged, dropped into a crying heap of nothingness…

NEVER again will anyone…have to live with what I’ve put up with …the distress.

There is way too much pain, too many illnesses, diseases, &

people that suffer daily ….needlessly.

Anyone who tries to tell me or YOU..Life is “easy peasy”…

They must be running in an entirely different time & space…for that’s crazy!

Yes… I write all too often about “love”. I’ve had to crawl out of the pits of hell, abuse, emotional. physical and moreover mental & emotional.

I’ve never said I was some “ranking” of an angel.

But, I do KNOW NO ONE on this planet will fair as an “angelic” figure.

Like I’ve heard…some people are trying to be hurtful.. & their mouths and mind state just pulls the trigger.

By this moment…I thought life would be better..different..well..full of love, laughter…and of course forever after..

What a damned dream fantasy world I was living in…for I feel as if I’m some kind of vermin..a bat…hanging off of a rafter.

Some make us feel ashamed, some bitch, moan, mumble under their breath and then break our hearts….

Have I been so damned naive’ to think SOMEONE REALLY loved ME for ME  from the start?

I’m just someone that has been handed down… and I’ve never 

really felt LOVE!

I see those that “think” they are happy..with greed, lies, just unfathomable ways that shall be judged someday up ABOVE!

Someone said to a friend,”how do you sleep?” because of a statement….and good gosh all I could think of was what a freaking creep!!

We are being demolished…waiting as those who come and want to break us down…

They better take me to the deepest oceans if they think in their horrid ways…make them think I shall ever in their own lies…drowned.

I’m no one with “clout”…I’m not famous, rich or…. have

one damned thing to brag about…

I’ve never & shall never be someone who thinks I’m better…within or without..

I can guarantee not one of us…are “born” without soul…

We may be born with struggles…but look how many become  BOLD!

and from this..all I think is SOMEDAY….MAYBE SOMEDAY…

SOMEONE SHALL SURROUND ME WITH THEIR LOVE AND AFFECTION…. AND GIVE ME DIRECTION…..

AND THERE ARE TEARS ON MY PERSONAL CROSS TO BEAR..

because the ONE person in THIS LIFE…no matter close or far…is completely out of my reach..

I’m in complete defeat….

I FEEL TORTURED!!!!!!! & do NOT know why!

Rhiannon Steele

7/24/2023

Pain News Network World Wide Pain..Patients left behind..in Pain!! fro the WHO!!

 https://www.painnewsnetwork.org/stories/2023/7/5/millions-of-people-worldwide-are-left-behind-in-pain

Pain Patients Around the World left out and in Pain  by WHO!

https://www.painnewsnetwork.org/stories/2023/7/7/home-delivery-of-rx-opioids-could-help-chronic-pain-patients

  More from Pain News Network

Dawning of A New Day..

Dawning of a New Day…

I’ve been swept away within a breaths’ space how fast life can change..

Just as a heart beat… or the rhythm of the perfect song..for I found my place.

I’m blown away and incredibly ready to spread my wings and fly…

The tears I’ve spilled…now I have my reasons to have hope …not cry.

Sometimes we walk away from something we should cling to…

Other times we wonder… as humans …why love and life tends to be askew.

“Tis never as I think it should be…

I’m learning to accept that I am excellent…just being me.

The stars may align in the heavens & planets are just in the correct space..

With my eyes wide open…and my heart always on my sleeve… I’m winning the race.

It’s a dawning of a new horizon; a new reason and the perfection of the soul…

That brings me to my knees… for now I can “”feel” that nothing has to take its toll.

I fear not how I deemed my life would be right at this moment…. I’m never alone.

Oddly I have had an awakening … what I need to make me see myself as whole.

I’m unique in many ways…. I dance to a different song… I accept that for it’s how I roll.

I’ve never been one to require material things…. now scars cover up my hearts’ hole.

Some may wonder if I’m a handful and may not be able to accept how I think…

I’ll not be someone who plays games;  I accept the changes… around the truth i won’t skate.

My head may be within the edge of where I stand on the edge… where I am totally free.

Toes over that ledge, arms open wide… willing to take a chance again…“Tis where I should be.

Thunder may roll, the skies turn cloudy.. and I watch how it tends to wash away all fears.

It’s only spaces between … shades of grey… suddenly I realize some listen & they hear.

What comes from the moments of each time my heart sings…

At that second my soul also …as a bell..rings.

Love is always ready to take you into the heavens..floating all around within the clear blue skies

Life moves, flows, ebbs, trying to bring me down; with time I shall stand on mountain top.. I shall arise

Never can I turn my heart out into this world broken nor  shall it be cold …

My guess is that I’m a fool & ready to try again… for love  am still sold..

Rhiannon Steele 6/18/2023

Wheel of my Angels....

 My Wheel of Angels....