I am praying you #SeeUs #HearUs #FeelUs all!

Whether you can #TakeABite4GP in #empathy or show support for our #MotilityIssues like #GP #Gastroparesis #CIP #ColonicInertia #SIBO #Crohns & so many other #AutoImmuneDiseases creating #ChronicIllnesses & their layers are often invisible, incurable, unnoticed or worse unaddressed illnesses without intervention by ourselves or others on our behalf. Who is more invested than ourselves in own quality of life and care? I know it is difficult to use energy we often have very little of in the midst of nausea, vomiting, pain, fatigue, diarrhea, constipation, with malnutrition with dehydration & brain fog. Advocate like your nutritional intake in small amounts every few hours.

We are not at a critical mass in our medical community or in general! Such an inaccurate and incorrect thought! The millions upon millions of chronic illness warriors would tell you we are long past critical mass.

When you hear IBS, Chrohns, Ulcerative Colitis, Gastroparesis, these are all motility issues and incurable functional gastrointestinal diseases. They along with cancer, lupus, Sjögren’s, Mitochondrial Disease, EDS, Raynauds, Diabetes, POTS, Migraines, and so so so soooooooo many others are chronic illnesses without a cure. They often overlap each other in a single patient.

We are at a critical masswith chronic illnesses in our country and worldwide. We should #TakeABite4GP #GP is Gastroparesis for those who cannot & please do all you can can for all chronic illnesses until we find treatments, research, quality of life and care towards cures for us all.

We are at critical mass with chronic illnesses.

It is not cost effective nor is it easy to take a patient like us on, we take up too much time.

This is true for our PCP’s, GI’s, Neurologists, Pulmonologist ‘s (sleep doctor), Palliative Care Teams, Cardiologists, etc.. yes, we have a lot specialists. Each of the specialists have their copays & prescriptions. The Mito patient has a mito cocktail which is not covered by insurance and for those with malabsorption issues, we never really know how much of our cocktail we are absorbing.

Doctors take a Hippocratic Oath to do no harm! I believe our insurance companies along with protocols, procedures, methods, & time constraints has made it difficult to treat complicated patients as an individual patient/person. Thereby, doing the best treatment for their chronic illness/s without creating a stressful, endless amount of paperwork to address us as a patient, the doctors are given a format on our “electronic medical records” if the wrong set of facts are entered into the chart? I believe they have to enter additional information, to address overrides/explanations, codes, verifications, alternative treatments tried & failed, & specialists which are addressing the other chronic issues. If the chronic chart becomes too time consuming then it becomes too much of a burden on a doctor/practice with a time constraint.

Too many of our physicians are having to move through their patients like an assembly line rather than an doctor patient relationship.

Chronic illnesses and chronic patients require thorough detailed treatments as well as an attention to details. The patients must advocate for their treatment so they do not fall through a crack in this current electronic record system.

The informed patient advocate who has been advocating for themselves, has been keeping a record of the events, to the best of their abilities, must be an active participant in their care. It becomes a heavier burden the longer they are on their chronic journey.

Some of us have been helping each other through this maize of ever challenging chronic illnesses. Myself, I have been a chronic warrior since my diagnosis in 1999. I have had to battle against the phrase of “investigational and experimental” on my testing/procedures/ treatments because my diagnoses do not have a set of successful treatment/s or cure/s. Thereby anything done to help me stay alive or have a better quality of life and care could be classified as “investigational or experimental.” The motility diagnoses I received in 1999 were idiopathic until their investigational and experimental testing found them to be linked to Mitochondrial Malabsorption & autonomic dysfunction. I was no longer idiopathic after my blood pressure was stabilized with medication at the end of 2011. I received a call in January of 2012 about my muscle biopsy from 2011 verifying my Mitochondrial Disease, it was not one of the major types of Mito, but at that time an unknown variant. I was told to begin the mito cocktail, try to do more greens when possible, less sugar (my body collected the sugar .. lessening the life of the mitochondria). At first, I was in a confused shock. I had wanted to know the “why” for years. Then suddenly, after a bout with severe “motion sickness- to the degree I was throwing up sitting still- and passing out when I stood up! I now had answers in abundance. Why my temperature was always so low. Why my blood pressure was always so low. Why I always saw those little white darts out of the corner of my eyes, I thought everyone saw them. I always had these little white darts and never knew anything different. When I began taking the POTS medication, the darts began to lessen, to an every now and then kind of thing. We have taken the motto “We bloom where we are planted” But sometimes our medical soil seems to suffer sadly

Be poorly nourished

At times, barren

In a severe drought

Have its calling hidden from all who require its purpose

Yet regardless of its fruits in view – We will #NEGU on an entire state being treated while our insurance companies are presently persistently denying out of state coverage to receive their chronic illness treatments.

During the current situation, we feel as if our state has reached a “critical mass” for its chronic illnesses – all citizens of every state, who are not independently wealthy, enough to cover the cost of their care without insurance, should still receive a quality of care to sustain their life. Not even a millionaire could sustain the full cost of chronic care. We must be assessed & addressed as a patient who requires quality care. Our lives should be assessed by success with a therapy & its proven results of quality of life overtime in regard to a diagnosis without cures or known successful treatments.

How many motility centers are in any given state? Do we need motility centers or do we need gastroenterologists who are not willing to let their patient’s health be at risk by allowing a heightened burden of dehydration and malnutrition in their documented “broken” digestive tracts.

I would think a proven therapeutic treatment would be the proven protocol for the chronic patient.

When a cardiologist sees the risk to organ systems dehydration would cause, a primary care physician sees the risk dehydration would cause, and a palliative care team sees the risk dehydration would cause the patient. The added stress of jeopardizing an antiemetic therapy which has worked for years to keep a patient stabilized and out of emergency rooms, results in stopping elevated cycles of increased vomiting. I believe there is enough evidence based criteria to help validate a treatment therapy for a patient with 3 Motility diagnoses, POTS, & Mitochondrial Malabsorption. A patient whose large intestine had lost its ability to function in 2000 required a colectomy. The same patient, in 2003 required a surgical obstruction due to the existing motility diseases still present and progressing. The same patient, in 2015 required another surgical obstruction, this time in the upper intestine, due to the existing motility diseases progressing. A very small section of the small intestine was removed along with as many adhesions as time allowed. During this visit, a doctor expressed the ZAP with hydration intervention was most certainly the reason I had made it past my expiration date with the level of my chronic illnesses.

I believe there is more than enough coupled with Chronic Migraines to expedite a need for continuity in care.

While I added my personal testimonial to this advocacy request for all chronic communities to be addressed, I am in no way special. I am an example of how necessary continuity of care can actually extend a patient’s life, while giving them a quality of life simultaneously. It may be difficult to see, in the midst of my examples, but I have, until recently had excellent quality of care. It has been with a fight, but I suppose nothing worth having comes easy. This chronic journey has certainly not been easy. None of us are the same and should be given an individualized patient based care treatment plan with their quality of life always a top priority.

We can all advocate to create a different reality together. Are you reading this & asking how? First, if you have been diagnosed, I/we are lifting you up in unconditional support & love. If you are empathetic & are asking, “How can I help?” THANK YOU!!

For the millions in all of the various chronic communities! We have already, in the last few years created change through awareness with proclamations & a National designation of Gastroparesis Awareness Month in August by the World Health Organization with the help of Congressional Representative Gwen Moore & HHS with #IFFGD @tippedmug @cecielro @melissaadamsvanhouten @bundytr5 @gpwarrior Yes, this has been years of advocacy with @gimotility & patients advocacy support teams #BeaconsOfHope for our #BrokenGuts! Are you asking how does this create a meaningful impact? Or a cure? For every action or act of #Awareness there is an #impact – no matter how small! Some of these actions have not been small at all! @aprilgqg founder/creator/philanthropist of #GQG #ChronicallyWell #GlitterQueensGlobal helping each other in every #Chronic #Community always leading to a greater moment than ourselves. #HR1187 #FGID #IBS #USA requiring cosponsors is our #MotilityBill

August is our Gastroparesis/Motility Disorder Awareness month

#September is #Mitochondrial #Awareness month #Mitochondrial research could help change our lives @mitoaction @umdf while we continue our dual path of @amdiabetesassn for the #DiabeticGastroparesis journey

We pursue all layers of our chronic! We wouldn’t ignore our feet, while our hands are in jeopardy! It is the same way for our chronic illnesses and our chronic lives. While multitasking may be a great challenge for those of us who are well down the chronic road, it is what we must do to reach our goal of better #treatments #research #QOL #QOC CURES #CureGP

#CureMito #CureChronic in all its various forms and types

We must find our physicians who see us as a patient, not a burden, but a blessing to extend our quality of life and care while on our advocacy journey to treatments, research, & a better quality of life minute by minute, hour by hour, day by day til the day comes our chronic illnesses are not the journey, but the cures we have sought in victory. Our advocacy achieved by not shaking adversity’s hand. We refused adversity & won our goal to cures. The day will come to y’all, to me when I am okay now, is a blessed truth.

God’s Grace is how I am here past my expiration date and am not gone, when my last stage was in 2006. The Grace of God with prayers and blessings through the ZAP hydration therapy has given me a body with His Grace. I have been spared from undue stress from harsher dehydration, the stress my heart would have endured from a higher degree of nausea with vomiting without IV therapy. My body did not absorb oral meds well enough to extend my life. Grace through ZAP therapy did so my body is still very much here. Grace was even extended for my osteoporosis by IV meds to alleviate my bone loss over a seven year period. Two years of forteo, five years of reclast (one time a year in a 15 min infusion) my body would not absorb the oral medication, my bone loss was too severe and no time could be wasted. 83 year old bones 7 years ago, the OBGYN group had never seen an osteoporosis report as bad as my bone scan was at that time.

I have been given a great amount of Grace on my chronic journey. I have some stories to tell, which are quite the opposite of Grace, but Grace still wins over the negative. I am here, fighting to live with another testimony in Grace.

My palliative care team has already shown that the patient’s quality of life and care matter over all else. So, the first part of my testimony has been written. We need everyone to share their testimonies along with their gastroenterologists who are willing to treat Gastroparesis, with or without a Gastric Electrical Stimulator,.. we need others to indicate whether they are able to access the protocols easily, are they able to communicate clearly with their doctor’s about their treatment and are they able to manage/advocate for themselves? Do the gastroenterologists in their state seem able to treat other patients in the state? Are the gastroenterologists willing to share their information with other advocates? Is it possible that gastroenterologists might be willing to join together with other gastroenterologists for the benefit of the chronic motility patients in the state to help create a data base? While it is neither financially nor physically feasible to ask chronicle ill patients to travel long distances, it seems like a reasonable request to see if there are a motivated group of gastroenterologists in our individual states which could/would be willing to do continuing educating classes in a online type of meeting several times a yea, more or less depending upon the need. This would help their practice and support their patients. In this way perhaps, each state could perhaps have the major motility centers as a consult for any gastroenterologists who needed source an additional resource for Gastric Electrical Stimulators, pyroplasty, etc. Through this process perhaps each of our states could gradually build up their gastroenterologists treating motility issues and decrease the number of patients who feel as if they have no one to turn to while battling malnutrition and dehydration. Our chronic communities are at a loss, they feel afraid because they are financially unable / lack the mobility/ insurance denies out of state coverage and cannot find a gastroenterologist to treat them within two hours of their home. This may seem like a short distance, unless you cannot drive. Remember we are speaking about chronic illnesses. A drive of 15 minutes can seem like a lifetime when you cannot trust your reflexes.

#Grace in the land of #Grace #Faith #Love #Joy #Peace #Kindness #Patience #PeaceBoat #Gentleness #Goodness

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