Gastroparesis Awareness Month an insight from a chronic anniversary event- Acute oxygen deprivation, UTI, an update into gene testing for MTHFR
I never left. While a lot has happened. Advocacy and awareness never change, just as our goals remain a constant fixture. A question, became a writing prompt on August 1, 2023. It was at this moment I realized the advocacy motivation w/actions – 1st proclamation was on 2015 in my state. My last year was apparently 2019. I also found the blueprint of where I was w/advocacy along w/spoons or lack thereof. Mitochondrial disease, migraine, Dysautonomia
Postural Orthostatic Tachycardia Syndrome POTS, & Gastroparesis/motility disorder with action towards research, treatments, quality of care & life, cures for all incurable chronic communities. The moonshot for cancer is a model for possibilities if diagnostic information, genetic analysis along with the knowledge from specialists towards a betterment of everyone’s gutshot. The combination of vagus nerve -1st brain & 2nd brain being factored into the overall research, treatments, quality of life and care while systematically working towards cures is an exciting goal. Yes, it is a goal accumulating from the massive amounts of previous advocacy actions done by doctor/s, patient/s, advocate/s, non-profits, support groups in all capacities upon which we stand upon their shoulders. Past, present, & future for autoimmune communities, invisible illnesses, rare diseases, incurable illnesses, chronic illnesses all communities joining in an advocacy effort towards research, treatments, quality of life and care, cures for our chronic communities.
I am approaching a first year anniversary, on August 15, 2023 my husband found me unconscious. He called the ambulance. They came, but left. He was checking on me, but when he came to on me (he works a third shift) so in the early morning hours, finding me on the floor cold was a difficult experience. Yet, part of multiple-layered miracle was unfolding. He called 911 back, he was then told to lay me flat. When he did, I wasn’t breathing, and he began CPR. The ambulance made it back to the house, they began trying to put a line into me. I began having seizures at some point. I was in acute oxygen deprivation. I was taken to our local hospital, then life flighted to the city closest most equipped to deal with my situation, & next level of the miracles. The city available & closest, (Thank you Jesus) was part of my palliative care team. The ventilator went in and would keep breathing for me for three days. It was questionable during this time period, if my brain functioning would be affected by the lack of oxygen, when I woke up. My kids were amazing during this situation, the oldest came in from Oregon and stayed until I was discharged. As did my middle child, my youngest who lives in the city of the hospital (another part of the miracle). The ICU and hospital team both truly amazing truly amazing. I had an UTI which had me in a “one flew over cuckoo nests’” state of mind during my hospitalization.
The UTI came on without any warning, at least none that I could recall.
Another built in part of the miracles, having an understanding family, palliative care looking out for me, & two psychologists all constantly helping/supporting unconditionally on my chronic journey. The first three days of this whole journey are gone. I can’t -will never remember. There was a chance I might have brain damage. Another miracle… yet the challenge is my brain isn’t functioning or working the same way at all. My memory took a hit. Things have improved, but the ability to maneuver, recall, process, … the brain functions have improved. Yet, I am still not the same. I am often not able to think of words I should be able to say. I was able to give everyone’s phone number. That is not an option anymore. I have been extremely grateful and appreciative to be blessed by all I have. My beginning point of recovery was in the step down unit of the hospital. An inability to use my iPad, phone, computer etc. So, by comparison I have made a great deal of progress. I am very blessed to be alive! Therefore everything else is the cherry on top. This is what I keep reminding myself.
My past journey has been replaced by a different path. I am completely aware of the fact that I am no longer functioning at the capacity before 8/15/2022. So, now the peace and patience of my equation which I extended to all in comfort and strength are now refocused in a different purpose. One no less worthy. Just redefined by the circumstances of my physical chronic journey. It has been challenging to find the new balance on a journey built by faith. Yet, when presented with so evidence of Godwinks, miracles, and a blueprint of a peon still in service, it seems that I am to bloom in this new garden.
I should- I have recited patience and peace. In my meditation prayer in our blessings. We all have two descriptors with which we can all be seen, or described by.
These are blessed fruits.
It is comfort & strength I send to all 24/7/365
*We are looking at the genetic side the equation through the MTHFR gene.
The Godwink of seeing an Ehlers Danlos warrior who knew about the MTHFR gene mutation might be a coincidence by some. I see it as a blessing of right place + right time.
Since beginning this writing the results of the MTHFR have arrived.
The MTHFR are positive on both sides. One more piece of the puzzle enlightened. Since my children, sons seem to be struggling from multiple chronic conditions, it wasn’t surprising to that my oldest son and I had the same result come back.
August the 15 – 22, 2022