It is quite appropriate to begin at the beginning ~~~ or some semblance thereof ~~~ let’s begin our #GPChronicSuperFabulosityReport with the NEWS….. and The DIAGNOSIS + DIAGNOSIS + DIAGNOSIS + it was as close as we could get in 1999 — the other shoe/shoes would drop in 2011/2012
UT Bowld in Memphis Tennessee is a part of many of the Gastroparesis/Motility Disorder Awareness Month/Week/Day Hour by Hour Story and you did not have to live or be from Memphis Tn for this to be a part of your truth and therefore we are all connected by this one part of our journey. There was a very unique part of this journey, Dr Thomas Abell had a floor in the hospital with a bed you could use (check into /you signed ~a sign-in sheet ~at the nurse’s desk but you did not go through the admissions desk/office) along with access to a shower, phone, TV, and you were able to use this room throughout the weekend/or week of testing the Doctor required a diagnostic work-up for himself. He would have a top to bottom evaluation done by the time you checked/signed out of UT Bowld. Then when my hubby and myself walked into Dr Thomas Abell’s office he was able to walk through the testing to give us the information he had acquired from his testing in coordination with the feedback from you from a lengthy detailed report of questions and answers about your health/current/past/as well as paternal/maternal health. He would then determine what, if any, other tests were required, or other input from any other Specialists were required, in case there was another condition, disease, disorder, etc. he felt like he needed to acquire answers on your behalf.
But we had answers, we may not have liked them? But we had answers. We then began a several month by month process to find out if an oral set of medications would be an option for me to stop my constant rollercoaster in and out of hospitals for dehydration/malnutrition with diarrhea/constipation -which seems at odds with itself but it wasn’t. The constant constipation was causing the intermittent diarrhea. My Malabsorption with lack of motility was playing a very big role in triggering my migraines Dr Abell understood this at the beginning/ understanding it and proving why? This aspect would take years. Dr Abell’s referral to Dr Lahr for a colectomy was absolutely the right choice in 2000 after my initial diagnosis of Colonic Inertia, Chronic Intestinal Pseudo-Obstruction Syndrome, & Gastroparesis in 1999. The colectomy in SC has never been regretted I have had to have two more surgical corrections for obstruction due to the lack of motility and the progression of the motility disorders. The last was a very close call with a rush into surgery and its location in my upper small intestines. My lack of motility has progressed into my esophageal spasms with worsening inflammation and a greater loss of motility into the Intestinal tract & adhesions creating discomfort. Yet it is entirely expected due to the nature of the diagnosis but I am blessed with a great support team, medically, my Motility, GI, PCP, Specialists, Palliative Care, and family. As well as an online advocacy support team serving our community with purpose #Cures #CureGP is a mission of a greater purpose than anyone person or Patient/Advocate We are blessed to be aligned, volunteering with a beautiful group of people who are Angels in our community AGMD, Association for Gastrointestinal Motility Disorders
As we work with Gastroparesis Fighting for a Change
Gastroparesis Fighting for a Change in Arkansas
My community page
My Blog www.iamokaynow.com
My personal Facebook
#TheEvent #Green4GP to #CureGP
We salute the unselfish and tireless efforts of the IFFGD www.iffgd.org with congress #HR1187 and achieving the National Gastroparesis Awareness Month on the World Health Observance Calendar in August. Sponsored by Representative Gwen Moore & The Department of Health & Human Services. We are excited to be able to say 33 & counting… States along with our National August Gastroparesis Awareness Month is rocking it out!!!!!
My personal journey of Diagnosis and advocacy
http://www.nytimes.com/2012/09/24/health/jennifer-jaff-legal-advocate-for-the-ill-dies-at-55.htmlJennifer Jaff New York Times Article on Chronic Warrior Attorney RIP
Jennifer Jaff, Legal Advocate for the Ill, Dies at 55 – The New York Times
As much as Raif Elsakar
UT Bowld, Dr Thomas Abell Dr Christopher Lahr in SC
And Jennifer Jaff an attorney in Farmington Connecticut (at the time diagnosed with Crohns… ) my Mother did what she always did for someone who crossed my path (in what seems to have a life altering effect) she made a quilt and sent it. Upon hearing she had passed away from complications related to her motility issues(had later been diagnosed with Gastroparesis) made my heart immeasurably sad. I, immediately, said a prayer for her family, friends, coworkers, and all of the others who had been touched by this amazing woman. I am a lil cog in this advocacy wheel. She was/is a bright beautiful light of justice & advocacy for all in the community of Chronic Warriors Journey.
She is remembered, loved, admired, and will most certainly be among the many we will be memorializing August 17 between the time of 5-8. Pm CST (or your respective time zone) #TheEvent #Green4GP to #CureGP
Can be found on my Community Page