I am going to give an insight into a place I rarely write as personal entry. I do not do this because I am a “We” not an “I” ~ this is a purposeful exercise. I am a patient/advocate and what I try to do as an advocate is lift others up and write as “our voice collectively” not as myself nor as giving you my continual insight into “my Journey ” & while there is a blog telling you my journey? I choose to not blog under my name rather @iamokaynow because I believe 1)we are who we speak 2) receive what you believe 3) while I added my first name in Twitter (so our #GPSisters_Brothers #GPNation would know it was me?) I want this advocacy & its empowerment of self & others – giving Grace to self & others to be coherent, cohesive & clear. This mission to #CureGP , encourage, inspire, & serve others by being a cog is a purposeful gifted genetic package just as sure as my genetic lineage.
With that very long intro… Here is the situation I would like to share. While keeping in mind? I am not unique at all in the community I am honored to be serving and I consider family. In the last few months my stress levels & focus has been stretched, losing my Mom in Sept. My hubby having Surgery, & I was juggling our normal situation of Gastroparesis, colon inertia, chronic intestinal pseudo ObstructionSyndrome, Mitochodrial malabsorption, & POTS. I thought I was just having focus issues due to my second brain (in our tummy) under stress. I have been dealing with a higher than usual – so logically this seemed to make sense right? My #CIPO = Chronic Intestinal Pseudo-Obstruction Syndrome has been giving me fits. ( the last 3 days going on 4 I am on the edge of the type of pain that has led to the hospital & obstructions in the past. I am doing everything I am supposed to do & everything the hospital would do if I were there. I have had a colectomy in 2001 leaving me with approximately 5-7 inches of colon = large intestines. An obstruction requiring surgery in 2003, again in 2015 – this time higher in the small intestine a very small piece was removed – it was obstructed & a twist was in it. There were a lot of adhesions & it was a mess.) I was also told from my labs on Friday my iron levels & magnesium, are low I am indicating anemia. I am usually very good at keeping things balanced, noticing if my focus, memory, & knowing if I am unusually “extra GPSpacey” I know there is a reason. I share all of this to prayerfully help another “catch” their situation. We have a tendency to “self-talk ourselves into a place or lose people — while in truth? We are giving a #GPSuperhero effort in our lives. Can JohnDoePublic even imagine how much effort it takes to keep maneuvering around a sink which has been backed up with rotting food for a week?
Except we have feelings, no plumber, no garbage disposal, no way to get it back out. We just keep trying a bit by bit by bit approach and NO ONE but NO ONE better suggest “Well if you would just eat something?” Or “I hope they can fix you/her/him!” If you have this person in your life, in front or behind –> please make a decision to either take them out of your personal space or do not engage if the aforementioned is not an option. #IncurableIllnesses last I checked are referred to in this way because the #NIH or any other Medical care Team of Researchers Treatments, Doctors, or anyone at another equivalent to the National Institute of Health in any corner of the world. I guarantee you if someone had found a way to heal, cure, reverse Gastroparesis or any other Motility Disorder or Functional Gastrointestinal Motility Disorders like Irritable Syndrome or #CROHNS OR #SmallBowelBacterialOvergrowth– www.iffgd.org www.agmd-gimotility.org are two non-profit organizations established for over 16 years. We are advocating as a group being a touchstone to well known, research driven, patient-centered organizations advocating for those of us with Motility Disorders. Through the continual efforts of IFFGD & it’s sister grassroots organization www.dha.org . We are now on the National Health Observance Calendar through the help Rep Gwen Moore Dept Heath Human Services & all of those who have #Advocated before, Thank you! Like Ms Maryangela Degrazia- DiTucci & Laura Schmidt doing the online support monthly calls to lift our Community through the AGMD. There are so many who go above & beyond to lift the #ButYouDontLookSick off our community. I know I am doing an injustice leaving so many off please forgive me. 💚
We have been pushing for #HR2311 for a few years now & I would like to tie in why it matters so very much. Do you remember the moment when President OBama announced our Vice President would lead MOONSHOT?! The research program which would expand focus & silo the cancer research/treatments to move us closer to the elusive #CureForCancer~~
Similar to the moment when President Kennedy said we were going to put an astronaut on the moon. He passed this mission off to our VP Biden as an Honor to his recently departed son Beau Biden.
How is this relevant to motility disorders? If we were able to get #HR2311 out of committee? The 5+ million starving for a cure? In pain, dehydrated, malnourished, dehydrated, homebound, living as I described when I began my blog? Would be forever altered! While there are more women , but not all. We are young, old, married,single, mothers, grandmothers, aunts, uncles, sisters, brothers, on & on .. These digestive diseases have no mercy But we could provide absolute grace & mercy with quality of life & a cure through #HR2311 our answer for Motility Disorders. We do not have clear facts on these diseases because of the lack of statistical data or diagnosis. We have a support community of approximately 10,000 it is not uncommon for us to see a loss in our community followed by 2 more in a week. We need a Motility Moon Shot.