Chronicling the Chronic Journey
We see our experiences through the reflection of ourselves and others these truths empower us all 24/7/365.
Definition of chronic
1a:continuing or occurring again and again for a long time
b: suffering from a chronic disease
the special needs of chronic patients
2a: always present or encountered
especially : constantly vexing, weakening, or troubling
chronic petty warfare
chronic meddling in one another’s domestic affairs
— Amatzia Baram
: being such habitually
a chronic grumbler
When we ask google and the Oxford Dictionary to define Chronic we are given the aforementioned definitions.
These truths we hold to be self-evident on a chronicling of our chronic journey. A prototype of warrior’s Bill of Rights. Our North Star is the mission statement of research, treatments, quality of life and care while seeking cures for our chronic communities.
In our incurable, invisible, never give up motto regardless of diagnosis-diagnoses each and every single one know the day will come when the cures achieve their purpose. On this day, we will have met ourselves through the empowerment of those truths which have always been self-evident.
Who defines our human/chronic journey holistically, physically, mentally, emotionally, spiritually throughout every aspect of our lives before and after? If I cast a net out to gather every stroke we took to find our chronic journey into our PeaceBoat, it would begin here.
If we are to experience our truth to the fullest quality of life and care while seeking cures for our chronic communities, then we must meet our purpose on every level of our human/chronic journey.
Each of us have truly unique qualities. If I were to ask you to describe two aspects cabout yourself, what would they be?
The reason I ask, is this. My two aspects remain true regardless of my chronic journey. Just as my DNA remains the same. If it helps you to understand the situation I am describing I will tell you one of my two aspects is peace. It is just as much a part of me as my DNA. Perhaps it helps to understand the tributary of a PeaceBoat. Our chronic journey does indeed reframe our journey, but how it is reframed an unshakable truth. It is a choice we each make.
When a situation is given to us, like a side effect from a medication stopping the debilitating nausea and vomiting. Do we complain about blurry vision or do we see a Monet garden? Do we reframe our circumstances? Is it the difference between an optimist and positivity in any given moment? If so, then perhaps let the Monet garden bloom. The lack of stress will be beneficial to physical health. It is true every moment spent in a choice of positivity will help health. Will you travel with me for a chronicling of advocacy? It would be my high honor to share a sliver of perspective of our chronicle on the chronic journey.
When giving a testimony or reflection about our chronic journey, it often takes time and much needed reflection with decades of additional information added by the work doctors-patients/advocate/ non-profits in coordination with our congressional representatives to seek our voices being heard on our chronic journey.
We must note there are many more chronic communities and bills than the ones we are highlighting. We by no means mean to imply this is the entire landscape of the chronic domain nor its entire history. It is a chronicling of a chronic journey humbly offered from a cog in service. In 1999, my chronic journey begins its true documentation. In the initial stage of 1999, after being rehydrated from another ER visit an angel of a gastroenterologist asked if I had seen a motility specialist. I told him, “No, but if he thought I was crazy. He could tell me. I could take it.” At this point I had already been through a psychological exam in 1990 due to miscommunication which helped my situation. So, I felt ready to go again, if needed. His response was, “No, he specializes in the movement of the stomach. He nor I will promise you answers,but I think he will be able to give you your best advice/ guidance.” All of this said with a sincere look on his face after his quizzical expression at my initial reaction. He told me it might be a little while for his office to contact me, but I would hear from him.
He told the truth. Late one evening I received a call from the doctor. At some point in this journey the doctor called my emergency contact, my mother. She immediately asked the doctor was he going to be able to cure her baby? He always tells the truth, Thank you Jesus. He told my mom that he was doing his very best, but there aren’t any cures for this situation, but he has dedicated his life to finding answers. My mother already loved my doctor after that conversation she deeply respected him. Telling the truth natters.
We re-emphasize the need for research, treatments, quality of life and care while seeking cures for our chronic communities. H.R.3396 #HR3396 #FGIMD research enhancement act of 2018/19 The International Foundation of Functional Gastrointestinal Disorders IFFGD, https://www.iffgd.org/ in behalf of our chronic communities with
their tireless advocacy & our original sponsor Rep Sensennbrenner’s added to the advocacy for legislators Rep Moore with our 15 cosponsors in our congressional representatives in Congress https://www.congress.gov/bill/116th-congress/house-bill/3396 It must be noted the impact of Rep Sensennbrenner, who will be retiring from his congressional seat after this term.
I am praying, as I am sure others are, for our leaders. The leaders/representatives who speak on the behalf of millions whose digestive tracts are broken. The infants, children, teens, young adults, elderly or anyone else who could easily be your loved ones today or tomorrow needing the required nutrition to sustain their lives. When we say failure to thrive it is exactly as stated our organs fail to thrive. Our hearts, liver, lungs cannot continue to perform their functions without the nutritional equity or balance of nutrients anatomically designed as humans. We were made to thrive within a body that would have a functional digestive tract not constantly suffering from dehydration and malnutrition.
H.R. 2501 #HR2501 Medical Nutrition equity act of 2019 addresses the issue of the chronic lack of nutrition. Many of our chronic communities have mitochondrial disease or malabsorption issues requiring a need met to address this urgent situation. H.R.2501 medical nutrition equity act of 2019 with its hashtag of #MedMito2019 coordinating with the nonprofit UMDF speaks with and for this chronic necessity of nutrition.
UMDF http://www.umdf.org/ The United Mitochondrial Disease Foundation.
If we are blessed enough to be listened to, heard, understood and given support with documentation on our chronic journey the combination of all factors determine whether we are able to our best lives.
As a young person, I did not realize the tiny white darts I experienced were abnormal.
I want to emphasize I had loving,wise, caring, intelligent parents. They were both off the charts intelligent (in the genius range). They loved me, adored and cherished me. That was not the issue. No, it was the exact opposite. We were a busy, involved active family. My mom and dad- my Pop as I called him was an optimist who looked at life positively. I was and am my father’s daughter which is how you remain active and ignore warning signs to keep living your life regardless of whatever indicators are popping up around you. The tiny white darts I had always known were not “normal “ nor was continual constipation.
I mention these because, as chronic warriors, we should let other chronic warriors know the indicators. The sooner a medical team can put a plan in place to support each of us, while we address our individual issues on our unique journey the better our quality of life and care will be for each chronic journey. I do not say these words flippantly nor lightly —->>> I believe we will absolutely arrive at our cures through research, treatments, quality of life and care while seeking cures for our chronic communities. IT WILL HAPPEN!!! This isn’t one of those optimistic, positivity filled hope and flowers statements. It is the truth! We will meet these goals, just as our advocacy has attained so many moments over this past decade/s. We have the advocacy of non-profits, the advocacy angels whom we lift up with forevermore RIP remembrance. The legends of whom we stand upon their shoulders. It is through their constant advocacy offline and online, those chronic warriors in every community in every support network! Their advocacy work is a part of what we are chronicling. Each aspect has been nurtured over time through the doctors and patients in different ways in our many chronic communities. The once a month in person support groups which gradually grew into both the offline/ online communities.
In 2006, my personal chronic journey was looking for support and answers. We had limited access to information around that time period. When experiencing issues with a gastric electrical stimulator, I googled my experience without any feedback at that time. In 2016, googling the exact same information the feedback was entirely different for the exact same issues. This is an example of what advocates, sharing, support, offline, online all a combination of doctors- patients- advocacy with education. Patients meeting with doctors creating support groups to then give feedback to doctors who listened to their patients. Doctors who continue to urge patients to reach out to patients to let them know they are not alone. Many of us have met support networks in our doctor’s office or online. The ability to speak to another person on the phone cannot be underestimated when those in the chronic communities are often isolated due to the chronic journey. Again the work of the non-profits comes back into focus with AGMD and their outreach of support and educational support calls. They laid a great foundation with educational panels involving the top specialists creating further educational support and guidance.
Having another patient with similar experiences to speak to is priceless. Whether it is about a procedure, a surgery, or anything else. The exchange of knowing you are not alone with a support network is comforting. A medical, friend, family support team makes the journey easier to travel.
In 2006 the yahoo support groups/my space began to transition into social media platforms while still meeting online and offline with phone networking in addition to groups online and offline. As I list through this history I am primarily thinking of Association of Gastrointestinal Motility Disorders -AGMD
and The International Foundation of Functional Gastrointestinal Disorders -IFFGD both of these non-profits began in 1990. They still remain active advocates working together in our communities to help us thrive to this very day.
The patient and doctor educational networking has been nurtured and grown through our chronic communities all continually advocating for our greater good with the prayerful / thoughts towards our goals of research, treatments, quality of life and care while seeking cures for our chronic communities.our incurable, invisible, illnesses always guiding us regardless of diagnosis/es a collective greater chronic journey always moving us forward.
Our reflection over time, a snapshot from a small prismatic section of our chronic journey by no means covers our entire landscape advocacy.
We are speaking from our chronic truth, our chronic journey. This moment is chronically chronicling a cog in service prayerfully empowering ourselves and others to seek research, treatments, quality of life and care while seeking cures for our chronic communities with perspective.
The perspective of a chronic-human journey is knowing we are uniquely defined yet never ever alone. A cog in service adds to our advocacy the spiritual and physical strength which changed everything about how my personal chronic journey narrative is & continues. Always, always with the intent to never ever imply my belief should be someone else’s journey. Everyone is unique and treasured by their uniqueness.
The amount of peace attained by grace given to me personally on this journey was the release of “expectations.”
The only significance a month or date had/has was/is what I choose to place on it.
The first step on this process was a personal loss. Do I let it rob me of joy? I chose to not let it. The month happened to be in November.
It would take time to put these pieces together. My IV journey began in November.
I could look at it as grace or a negative moment which one?… the scales ⚖️ were in front of me in 1999. I did not know how long nor how much of blessing I was being given at the time. It would literally be extending life. I chose to see positive. I struggled with it at first and then fully embraced it. The smell of certain foods would trigger nausea off the chart.
Facts made it easier. The facts on the chronic journey and the grace of not being in the dehydration roller coaster physically, emotionally, mentally or spiritually as much as I could contribute to my moments. We breathe in and out each moment with choices of action mentally, emotionally, spiritually, and physically.
At the very beginning of my chronic journey, I like many of you felt overwhelmed, lost, confused, but I was also optimistic about my future. Perhaps it is an extreme dose stubbornness in my ancestry and spiritual heritage? Whatever the reason? It was and is a BLESSING! Always feeling the possibility of our combined chronic communities to stand together with one voice for our research, treatments, quality of life and care while seeking cures for our chronic communities. It is an indelible truth empowering us all towards cures.
What are we contributing to our journey? If there are builders, negativity, drama, stress, anxiety, the acknowledgement and baby steps to create a healthier chronic journey could contribute to a greater quality of life as well as a redefined chronic journey. We are the author on how we choose go through our journey.
As I began to grasp my precious gems of Grace being sent to me every single time I would meditate, pray, biofeedback in my 15 minutes three times a day I began to become stronger.
Stronger where? Stronger spiritually. Yes.
Three times a day in my crisis I was given the opportunity to thrive to become stronger spiritually which in turn made me stronger physically.
Then the connections fell into place. During this time, at the beginning of my chronic journey, the Oprah Show was on. Do y’all remember the “a’ha” moments? Priceless guidance suddenly began to come in from different directions.
As I sat for my required 3 times a day of infusions I was forced to #PeaceBeStill.
In these moments I began to receive inspiration, growth, and strength. I wouldn’t know until years later how much growth was occurring during these times. It was my chronic warrior foundation. I transitioned from my previous life to what became the next step. I was given tools to be stronger. The diagnosis/es, as I later learned, really had been there all along. We are who we are on an ever present journey of yesterday, today, and tomorrow. Its uniqueness always impacted circumstances, but our DNA our truth never altered just where, when, how, who, what, and where we choose to empower ourselves and others with an effervescent illumination of facts as we know them at any given moment. Yet always a growing changing journey of us on our unique path.
As my mind illuminated the realization of events, I could see how blessings of growth on a chronic journey could strengthen me/us.
Thanksgiving celebration every year became more spiritual than physical. Celebrating the gift of being stronger no matter what.
We celebrate our thanksgiving 24/7/365. It isn’t a month nor day.
The pressure or expectations create a canvas of stress …
If we can eliminate stress, anxiety, or any other negativity from our chronic journey, then our bodies function at a much better quality of life and care.
Thereby, if you do not have the spoons to do Christmas trees, decorations or whatever else, then don’t. Do a single item which makes you happy. Do a few candles or something similar. If you like the small white little lights, then do those on something to turn on in the evening as daylight savings time goes into effect.
The chronic journey means you do what you can do.
Breathe,,,, in,,,, out,,, in,,,,, out,,,, in,,, ,,,out,,,,in,,,,out breathe.
The chronic journey, as I and others have come to understand it, means creating a canvas of no pressure and no expectations, to the best of our abilitiy. The ultimate goal is to be without or as little stress or anxiety as is humanly possible. In this journey, very clear boundaries are put into place. Healthy boundaries and priorities are placed into our lives.
All of the realizations and priceless gems were/are the way we seek or see our lives.
Our outlook on this chronic journey
A thankful blessing breathing in and out. Whatever the month, day, time, day or night. Breathing in and out.
Many times I have referenced the PeaceBoat. It is a strength given during the chronic journey.
Whether we are atheists, Buddhist, Jews, Christian, Islamists, Pagan, praying, meditating, chanting, monotheistic religion on a higher spiritual path of any kind which relieves you of your physical symptoms is not the purpose nor focus of our present moment. Being our best self in this present moment requires a healing of mind, body, and soul.
The PeaceBoat picture I share was an ancestral gift passed on from my Father’s side of the family. During one of my 15 minute infusions I had laid the tray by my side. It was accidentally stepped on creating a crack. It is a sealed glass. Therein it cannot be fixed without changing the original structure of the tray.
As you look at the picture think of the substance of the words I have shared as a metaphor. Remember, we are on a chronic journey which transforms, but does not alter our DNA. We are each unique unto ourselves. None of us knows the amount of time we have on this journey, not even the most brilliant of specialists.
Once when a fellow warrior asked, “why won’t our doctor tell us the road ahead? We have the same diagnoses. We are the same same age. We have children the same age. We have had the been on the this chronic journey the same amount of time. Why won’t he tell us how much time or how long we have to live? Or what is coming next?” After my fellow warrior had asked this question a couple of times. I replied, “I believe he cannot. The chronic journey is not the same. It is completely different for every single one of us. He cannot answer a question he himself does not know the answer.”
One analogy with a visual, picture if possible, a high-tempered glass being hit with rocks. Sometimes a rock will chip the glass, sometimes it will splinter the glass, sometimes it will chip the glass. There are a wide range of variables which impact the possibilities of what occur when the rock hits the glass. The speed of both objects, the temperature after impact, the filler used after impact and number of times the glass is hit. Our bodies with our organs are similar to the glass along with our variables impacted by repetitive dehydration and malnutrition. How many hits can our organs take before we fail to thrive? We can’t replace our windshield or windows. There isn’t any way to determine how many times over how many years over how many chances we have have to claim our nutritional equity on our chronic journey. Were we born fighting to thrive? Were we a late arrival to our nutritional situation? Were you instinctually living your best choices until your broken body said, “I have gone as far as I can go. Now I need help.” The problem: we didn’t know our chronic illness language. It would take awhile to grasp the slow to stop part of our mind, body, and spirit. We only knew the the truthful joy of meeting challenges and mastery usually approximately three or so at a time. It was exhilarating to multitask our exercises into our journey in three different levels at the same time. Teaching,writing grants, being a mom, wife, Girl Scout leader, baton teacher, church leader, & working on the first step of the masters degree towards a doctorate. I may be leaving something off the list.
It would take awhile to understand how my journey was being re-written in a new expression. I, we, you, us was, were, /are challenged to the advocacy of all incurable illnesses, all invisible illnesses, all suffering
As the years have passed, the answer has been shown. It has been shown. The support team plus the medical support team matters so very much. We must listen to our bodies. We must listen to the wisdom of the right doctors alongside our instincts. I have regretted listening to the wrong the doctors. I have deeply appreciated listening to God’s voice – some call it instinct. When you are told you are in your “last stages in 2006” and asked “What are you going to do?” Then replying, “Do what I have always done.”
Often humans become attached to the correct word or pronoun in a sentence. When on a chronic journey those fighting for their best moment prioritize our battles. The spoon analogy is very well known now thanks to the brilliance of Christine Miserandino=“The Spoon Lady.”
The balance required to know how to allocate your/our resources on a chronic journey empowered by advocacy for ourselves and others. It is the cog in service unconditionally supportive extending comfort and strength always24/7/365 unconditionally through love lifting all in positivity and optimism the #PeaceBoat of Grace
It isn’t a matter of knowing more or less, but trying to choose your – our best choices which aren’t irreversible to live your-our best quality of life and care.
We are living lives with incurable illnesses in bodies which are malfunctioning in many layers of chronic often trying to manage malnutrition and suffering.
Our best protocols often are managing to keep us out of hospitals, away from emergency rooms, living each day in a state of prayer to not be infected by our infusions which are our best option for care. Many of us know the value of a great palliative care team which supports our home support team allowing our chronic journey to empower ourselves to continue balancing this delicate path of success. An uninformed onlooker wouldn’t understand why a home bound incurable invisible illness patient suffering from chronic migraines and layers of chronic illnesses felt such optimistic positive thoughts about our future. They also wouldn’t know every breath is living with miracles from an abundance of peace and love. They cannot see the PeaceBoat of this chronic journey.
Yet and still it is the chronicles of the chronic journey.