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#Gastroparesis #TakeABite4GP

It has been a bumpy week physically, emotionally, & spiritually, but it is not unique to me #5MillionGPStrong go through this & more continually. We mourne too many passing in this fight. A #GPWarrior leaves their earthly body. #Gastroparesis a #MotilityDisorder no longer tortures them, yet we mourn the loss. We send condolences to their family, friends, all of our #GPNation who is feeling they have lost a member of their family as well. We have already done this 15 times this year in our small online community/family of approximately 10,000. 

When dealing with a chronic, incurable, multilevel, invisible, not well understood, requiring the most defined of Specialists- of which there are few- ? You learn &  become an entirely different person through the process of fighting & surviving to the best of your abilities. This does not happen in a vacuum! It is dependent upon a multilevel support team to match the diagnosis & care required. It also, in my opinion, has to have a belief in something greater than yourself. I will not define your journey of spiritual foundation- the cornerstone of your meditational, focus, calming your mind thereby calming your body. It is my pathway to a better application of biofeedback to control pain. It helps me to see a sanctuary instead of a prison. I also find peace, joy, happiness, self fulfilling providence with advocacy & the ability move as one with many voices & opinions. 

We are in a space with our MOTILITY DISORDERS -> GASTROPARESIS- > CHRONIC INTESTINAL PSUEDO OBSTRUCTION-> COLONIC INERTIA ->( in addition to MITOCHONDRIAL MALABSORPTION -> NEUROPATHY & POTS ) which the options are becoming  fewer & fewer because of the diseases & how long the fight has been) This is why #HR2311 –  our Motility Disorder Bill  & #TakeABite4GP Campaign-Challenge are imperative. 

This week as my family both blood, & not blood both I Love dearly, prayed! The Medical Team was able to do what was logically not supposed to be accomplished. My 6th port. I will do a short synopsis for those not familiar. I had  PICC LINE PLACEMENT in the same place from 1999 until 2005 Then my port. I can no longer – ever have a left placement it is gone. When it took a vascular surgeon forever to put in my 5th port in place in Nov 2014, I was told he possibly was going to have to go into my neck, groin, or arm. Because my chest was closing “vascularly” speaking or had too many “roadblocks.”  With every dressing change & needle change since Nov 2014. I prayed & Gave thanks for my port doing what it should. See, I have had all of my large intestine (colon) removed except approx 7 inches, because it is paralyzed (2001) still there have been blockages (2 requiring surgery but things are so much better than before the colectomy). My insides are too twisted with adhesions to do tube feedings – the surgeon has said. The Gastric electrical Stimulator failed for me. Are you thinking “oh my” it is so sad so many things went array in this unique way? What you need to know is with Motility Disorders & those with severe issues you will see this & more. As I described “where I am at?” Please do not be discouraged! Be empowered with me to act! By asking your Representatives to Cosponsor #HR2311 Sign To request your Congressional Representatives to Cosponsor HR2311& Join our #TakeABite4GP Campaign-Challenge. Public Facebook Group for #TakeABite4GP

I have learned to never rob my moment with the worry of what I cannot change. If you believe this is more nuanced, but I will trust you are seeing. Live your moment, do not pick-up the past, or run the future with worry. Breathe slowly calmly & lean into your day. This way I can be fully present. Not lost in a moment – caught in a disturbing stressful cascade of what ifs. 

This leads me to the next thought #TakeABite4GP Campaign-Challenge is all about the support/Empathy which is required to help any community who needs a voice or has precious souls passing “due to lack of treatments, understanding, & anything to offer”. Sometimes in pain because there is not anywhere to go to address their diseases – they cannot afford to go to the specialist they need, or do not have anyone to help them. ) #TakeABite4GP is standing on the shoulders of the ALS Campaign/Challenge — The #TakeABreathforCF & we pray our #Bites for our #InternalParaplegics #5MillionGPStrong will be seen as those who run for those who cannot ?? We are filling these big steps of Grace, Wisdom, Compasion,Empathy, asking, praying , to make this the moment where #GPNation conveys #ThereBut4TheGraceGodGoI  & we want #No1ToSufferWithGP or #MotilityDisorders #Not1MoredxWGP #U&MeCanStopGP 

So, to conclude, while I know my “facts” I am still walking with peace, optimism, patience, & Grace for ourselves & others.