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  • Debbie 

I Am Still Here And I am Not Ready to Give Up

My video continues to illicit chronic thoughts after prayers and meditation. I never know where I will go in these moments until they have come to their completion.

#Muchness allows us to prevail with our Father as children when otherwise our world tries to make us believe we are sitting at the “Big People’s table” while in truth we should remember we are still His Children!

Even when we cannot be fed “real food “ we can always be fed His Spiritual Food” & it can actually sustain us both physically, emotionally, & spiritually.

It is with His Grace a weight loss of 2 pounds in a month was His miracle. I do the videos for advocacy, it is not for my comfort, but for the other community members. I am carefully using my spoons with positivity and optimism.

If Grace and Peace are not there, I cannot choose the option.

I am slowly, but surely blending the blessings of this wisdom along with the reality of spoon debit. We cannot create spoons/energy out of spoon fumes. There was a time when He let us go on “His Grace is Sufficient” to let us be “Superwomen” until our bodies went beyond its own limitations and His allotment. Now, we are here to show others how be okay. Be themselves, only in putting ourselves first in every aspect of our own lives. We have been given His gems of Wisdom, Grace, Peace, Joy, Kindness, Charity, Faith, and Goodness as an encourager, empowered, motivator, advocator to help others in all ways on this temporary chronic journey. We can bring hope to ourselves and each other with greater awareness moving towards better treatments research and quality of life and care in all aspects of every invisible incurable illness diagnosed. While we know we are one of a kind, we also know we are part a choir His choir all of humanity. We each matter. Every single one of us. We must be clear about the need to find our medical support team with insurance teams who have not lost sight of how precious each person is this temporary chronic journey. Thereby their care is the highest priority to each of us. We are each other’s mother’s daughter’s, son’s granddaughters grandmothers, sisters, brothers, children, Father, son, … We are all someone of the utmost importance to someone and that someone should be all of us. We should all be seeing through the lens of “There but for the Grace of God go I!” The incurable Invisible diagnosis could be your/or your loved one’s diagnosis tomorrow. Who would be your physician? Would your insurance cover out of state treatment? Or are you Graced with being in a state with a center treating your incurable illness? Does your location actually determine whether your longevity of life expectancy, as well as your socioeconomic status? Will these two factors determine whether you are going to be blessed with a greater quality of care and life? Yes, in fact the answer is yes. We are not going to be able to live as long nor have the expectancy of quality of life and care without access to specialists to treat our chronic communities. If there are fifty states and only eleven centers treating motility issues then the deficit is quite clear. While there are numerous gastroenterologists they do not all treat patients with gastroparesis nor do they all want to use their time treating patients with multiple motility issues. Even though some of us who have been living with chronic motility issues for years have learned how to not to be a burden to a physician. We still, on paper look like a tremendous burden. I also believe the insurance companies are burying the doctors in paperwork for patients like us. Thereby, making it even harder for a physician to keep us as a patient. It would seem that a patient with chronic intestinal pseudo-obstruction syndrome, colonic inertia, POTS, gastroparesis, chronic migraines, mitochondrial malabsorption with a record of two surgical obstructions(the latest in 2015 resulting in a small loss of upper intestinal tract-it was twisted, along with too many adhesions to be removed during surgery) after a colectomy. The point of this being there is actually a documented internal progressive digestive tract malfunction. It was diagnosed in 1999 and has been going on since that time. I have been treated with ZAP therapy. It has kept me hydrated and out of the emergency room dance which is the absolute worst place for anyone who relies upon IV infusions. I began with a PICC line Nov 1999 and transitioned to a PORTACATH in 4/25/2005

I have only had one instance of infection in my portacath staph blood, but not in my body. It was just in the portacath. I have not had home health care. Since after they set me up in the beginning and the insurance paid for a set number of visits then taught my husband how to change the needle. We were then free to do things under advisement with our doctors, nurses, and healthcare system with our infusion company. This has kept me alive. It is actually a testimony on a couple of levels, or more. I have been told by more than one doctor I have made it longer than expected. I am past my “expiration date.” I was “in my last stages in 2006.” I have not had an infectious line in 19 years. My ZAP therapy has kept me alive and my organs not in jeopardy through a very well documented chronic illness. It cannot be denied in many ways I have been given miracles on many levels. Yes,I fight to keep the quality of life and care which has gotten me this far on my chronic migraine, POTS, CIP, ColonicInertia, Gastroparesis, Mitochondrial Malabsorption journey. It has taken a lot of trial and error to know what why this is my therapy. I am still here and I am not ready to give up. Amen Sēläh