4. What’s one wish you have for the upcoming new year related to your experience with disability, disease or mentalThe Mighty has as a request for December stories this #4 Question, and when I saw it? I knew immediately what I was going to write! I spend my days homebound due to fatigue, nausea, vomiting, swinging back in forth between constipation & diarrhea, chronic pain & abdominal based migraines up to 3 or more a week sometimes! My grand adventures are Dr visits, hospitalizations, lab work, procedures, etc!
Please do not feel sorry for me because I use every moment to make the voices of the #5MillionGPStrong & others with #InvisibleIillness #Spoonies #MitoCure Be Heard along with supporting and being supported in many GPSupport groups! #CureGP Gastroparesis:Fighting for a Change is gathering momentum along with our support groups being advocates to make a change happen! I won’t lie we have a long way to go but with more help?
So, yes this is my list for the new year! More local new stations will do what Jessica Larche did in NC! And TCV11 initially had done in Ark! Then some of the national stations do the same! Ellen dance with one of us and all of our petitions get their signatures! HR2311..it will get all of its Co-Sponsors and it passes through its committee and eventually passes through its required path to be signed by the president! H.R.2311 – Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2015
It is simply heartwarming thinking about this list of possibilities which are completely possible! Not miracles just acts of moral conscience because there are people all over the world starving because of theses motility disorders! And it is a tortuous disease! But these wishes brings our moral authority back in line with what it should be and the Hippocratic Oath lives up to its promise! (Because as it presently stands? Harm is being done) I wish in addition to all this that we are finally seen! “But you Don’t Look Sick” or “You look well” are like fingernails down A chalkboard! So I wish if you know and love a person who has taken all their energy to be out somewhere and look their best normal? Please speak up! Say something ~ Like , ” Do you know how long it took her to get presentable and the outside doesn’t match the inside!” Good friends and loved ones are a blessing! I wish we all had one or two and we learn to speak our truth! Kindly but firmly! The other phrase I wish all my GP sisters & Brothers .. #ChronicLifeSufferers would start using in their Arsenal of #IAmAWarrior “I will forgive you for asking that question if you forgive me for not answering!”
Next is the medical field in general, please learn to wear our shoes! So, many of you already do but as a patient? We deserve to know every detail! Y’all wouldn’t be here if not for the patients! This is not a game of hide and seek or “surprise!” No you discuss our care, results of all tests, procedures, everything! If you intend to change something? Get in the room and discuss it! Because again I am the patient! I am the reason all of this is being done!
Finally, #curegp I wish it would trend on Twitter, FB, Instagram, and cooperations with philanthropic hearts and minds would take up #Curegp along with a few well known philanthropic actors/actresses & singers until the need of this situation could no longer be ignored! No GP Brother or sister was told I am sorry there is nothing more we can do and then we lose someone due to complications of these disorders. My dearest earnest deepest desire is for this situation to change in the new year 2016!
We even have a calendar for 2016 Gastroparesis:Fighting for a Change Calendar 2016 with the proceeds going to International Foundation for Gastrointestinal Disorders who has a record of using money to help with research!
My wish is this becomes a “on back order item” because so many have been ordered!
And of course I wish #CureGP becomes reality in 2016! Be Blessed and well!