How do we remain ourselves in a social media platform where it can be a lil rough at times? We can only share a perspective & thoughts from a viewpoint of patient/advocacy & with the knowledge of a singular “big picture” goal of many in our community. We come at this with many personalities & ideas yet, we still want a better quality of life & the ultimate goal of a cure for our many incurables – hence #CureGP #MitoCure and the many other hashtags. It is simple & complex in its concept/mission. #CureGP #Gastroparesis a motility disorder faced by over 5 million in the USA. It has a bill in committee in the USA HR2311 which would provide centers of excellence & research  my prayer for this research is to do what our Vice-President is doing for Cancer in siloing all the research. Therefore everything is not scattered and our precious jewels are all gathered togethered. (perhaps giving us better statistics of who, how many, where, why, what, & how we help/cure) 

I explain this to say the on-line support groups around the world non-profit & those who advocate without a non-profit status come to this issue with a deep desire to help those dehydrated, malnourished, in pain, fatigued, with nausea, vomiting, diarrhea, constipation, — multiple hospitalizations, procedures, feeding tubes, port-a-Caths, piccs, TPN, IV infusions, IV meds, all in an attempt to address varying degrees of an internal paralysis – our lack of motility in varying degrees. The term paralysis – yet it is- is not – the best descriptor for a colon aka large intestine not able to move bile. Nor does the  small intestine work as it should when bile is backing up in it along with the left over 7 inches of colon. When the motility of your stomach slows to point of not moving or dumping. … It is called Gastroparesis literally meaning paralyzed stomach but it is referring to the motility in the stomach or rather lack thereof! This specific type of motility disorder with neuropathy can encompass the stomach or part of/to all of the digestive tract. From top, esophagus, to, bottom, rectum. It can be incredibly difficult to remove bile from our bodies when the muscles do not work as they should.  I think you can insert the unsaid here – it is not easy. 

See it is a simple goal of high complexity in the level/layers of diagnosis & variations of symptoms which are different from patient to patient. 

Looking at the advocacy from patient/advocates on social media it is inspiring to see the dedication by many. Of course, there are those in the media  who choose a combative, negative, gaming  type of interaction filled with drama. But it is never a situation which has to be engaged with – always fits,anger, or negative complaining can be addressed with kind helpfulness or completely ignored (kind of like not giving a fire oxygen – it cannot continue poof gone) again simple yet complex. 

Are you a researcher? Looking at our largest oldest Non-Profits www.iffgd.org & www.agmd-gimotility.org the work they have done over the years on the behalf of our community, #GPNation, along with so many others, our fellow  #GPSisters_Brothers who we stand on their shoulders, some of whom are no longer with us- those #Warriors who are still with us –>their courage, advocacy, willingness to try what had not been tried before advanced the research & otions + answers for our overall community! Thank you !  #ClinicalTrials Gastric Electrical Stimulators – which are so very helpful to so many took many years of trial & advancement from the dedicated doctors but also our beautiful courageous #GPSisters we honor them each day in our prayers & thoughts. This device is still being advanced & improved. (Research — just looking at this lil piece is a great hope & #Inspiration  for #GPNation)  It is another aspect of the simple & complex – so many stories to arrive at this option. #Inspired 

(We really need a #GPHistory page, cause how do you appreciate how far you have come, if you don’t know the whole story?

Sorry thought bubble!)

Still I believe we have more to be optimistic about than downhearted with the options for support & advocacy . Be a #GPReporter 

Show your talent – show you! #GPStarSearch need some joy? #GPElfie is ready to come visit you! It looks like she may be going on to be #GPJoyElf & travel throughout the year to spread lil gifts & joy. She has a lot of houses to visit & does not want to turn down anyone! So she is going to keep traveling! #Inspiring 

We have advocacy in so many flavors & support groups the same!  We have a new type of support group in an app discord https://discord.gg/mM8Yv59 https://discord.gg/mM8Yv59 where you download register, & set it up like any other app & then request to join a server. All are welcome with Motility Disorders.  Our password to the link is on the link itself mM8Yv59 you will see the #TakeABite4GP information & some of the discussion after you get into the chat. We can do group voice, text, and pics in the chat. It is taking our support to a new level (I just wish it was called accord instead because the voice feature especially is so cool! It is like jumping into a great conference call with a great connection & no long distance charge.. And verrrry low data usage. ) Plus the app is available across multiple devices /PC/laptops! 

#Inspired  by “Scars to your Beautiful” by Alessia Cara   – everything – every moment- is a blink, a thought away from seeing your beautiful in you, your family, your community, your world . 

Prayers & meditation every morning with meds. & I love “aha!” Music & reading ! Scripture,  The Four Agreements, The Greatest Thing in the World by Henry Drummond, Maya Angelou, Leo Tolstoy “What Men Live By and Where Love is, There God Is Also” Corrie ten Boom, Shakespeare. 

May this day find you being blessed ! 

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