The acceptance in a reality we have no control of is a freedom of a tapestry. This tapestry’s threads is made of beautifully woven threads. These threads hold us in our lives with Peaceful positivity, Graceful strength/optimism a steady growth in all we say and do from hour to hour. We can breathe past our physicality in spirituality to live fully above a reality reflected in chronic bodies often diagnosed with realities which would try to rob us of our Heaven on Earth. We can choose to see beyond ourselves and words rooted in physical definitions which often try to lure us into conversations about what we have or have not, missing the conversation about what we are seeing, hearing, understanding about ourselves in Grace & Peace. It is a greater conversation than the one filled with the why, what, filled with recriminations of why we arrived at our current predicament. Let’s quit the questions about our lack of control in our current incurable situation as advocates seeking cures for our chronic communities. Let’s communicare as advocates in our Grace, in the fullness of our humanity knowing our adversity took us on a higher path filled with great empathetic unconditional love to all, while seeking to help as many as we can before exiting into a higher Grace with an infinite amount appreciation for the opportunity to be a small cog as a advocate. A deeply humbled, honored grateful blessed member of the chronic warriors. As such, we are members, allowed to share and contribute to our goals toward better research, treatments, quality of life and care while seeking cures for our chronic communities. We are seeking the passage of HR1187, our motility bill, in the USA still requiring cosponsors (The IFFGD was looking to reintroduce this bill into our new congress.. as I await this information I continue to share the information I know. It is truly an honor to be a voice for our communities) The nonprofit organizations AGMD -Association for Gastrointestinal Motility Disorders – a platform empowering those with motility digestive diseases and those caring for those with chronic illnesses through outreach programs /regularly scheduled topical conference calls for those newly diagnosed & more experienced diagnosed. Calls to share /mentor those diagnosed with chronic illnesses. Living with chronic illnesses can be very isolating. Calls from all areas of the country, sharing compassion,wisdom, strength, empathy can be greatly beneficial for those who feel they are all alone. Those who call never give their full name nor any personal information on the call. Privacy rules are strictly maintained.
IFFGD – International Foundation for Gastrointestinal Disorders – lobbying legislation & coordinating with advocacy/outreach making life easier for those with motility issues. Both have led us through their efforts as advocates for all digestive diseases since approximately 1991. Newly formed nonprofit Glitter Queens Global adds a voice to empower those “Chronically Well.” This is a motivational, life coach, thematic nonprofit which has begun to build upon its platform of advocacy of those with chronic illness reaching out to others with chronic illnesses. Coach April with her best selling “Chronically Well” & team members known for #WarriorWednesday #TogetherWeFightTogetherWeWin as well (as well as many others) their glitter bombs for birthdays & holiday seasonal events to empower, enlighten, educate, & motivate unconditionally with support & love in a myriad of ways one of which is Facebook live sessions interactive coaching lifting chronic communities. Empowering ourselves and others to bring ourselves higher by lifting each other whether it’s day by day or hour by hour we can lend each other enough strength to manifest our higher path through Him or if your beliefs lie through meditation…. let’s choose to be greater in our humanity in empathy Peace, positivity Grace and optimism.
As I give a synopsis of advocacy information I can share with you, from my chronic journey, at this moment, it is not all of the vast array of options available to us in our various chronic communities. Thank you Jesus!
In 2006, I went online, faced with an issue I could not find anyone available who had a shared experience of my diagnosis/es nor my then set of issues. My newly placed gastric electrical stimulator. I went online to a yahoo support group. While it was amazing, I was extremely happy to see the amount of people speaking on a vast array of motility issues, no one had my particular issue. Fast forward to 2013-2015 then I went online to the support groups. I had my choice of numerous groups with various types of information. The entire process of options had changed. While judgement, commonsense, privacy all normal aspects of your daily life and how you conduct your life would still be applied add more layers when conducting ourselves online, safety, privacy, etc. Please take care before you jump into waters it is a lesson well worth the wait. We seek wisdom, so putting aside wisdom in search of wisdom is a foolish destination, if not cautious. It is a priceless blessing to understand the chronic journey with patience and peaceful perseverance.
I must be honest in saying I have not been as active as should have been in the last year due to the chronic issues I personally have been given… fact not excuses. My inadequate attempts to re-emerge into advocacy have not been as successful as they should have been. This said, I also acknowledge, I can only do the best I can and then go forward. This is me going forward. I have some blanks to fill in. I will attempt to do so when Grace allows.
There are many factors in our chronic journey beating ourselves up over lost spoons isn’t helpful. Doing what we can, when we can is helpful, for ourselves and others.