My Healing Journey... has been long...and still in process...
I laminated this poster and put it on my fridge with magnets to remind myself of the many aspects of healing and what can help that along.
So much of my healing journey happened privately away from public eyes and it was all on my shoulders to navigate and manage... under extreme circumstances... much of it was without supportive teams of doctors to figure out what kind of medical treatment or support would help...
I am historically fiercely independent and did not know how to find support I needed. I got used to suffering the adventure alone… and I did not have a typical good result when I sought medical support for the many issues I had very young. I did not have confidence that doctors would or could help.
First I will include some background on a collection of complicated health issues that paved the way for odd stuff to happen with my tender-sensitive nervous system. Some were not entirely addressed. Between repeated traumas, and shocks to my system.
In 1980, While living in Santa Cruz to finish my college degree, I was shot at by ugly men who tried to abduct me. The bullet did not hit me, it hit a car I hesitated to pass once I clearly understood they were slowing after making a U-turn to head back toward me, in order for the passenger to reach past the driver with a gun aimed to shoot at me at 9:30am Saturday morning while I walked the many blocks to Shopper's Corner.
I did not get harmed physically that day, but I became deeply mentally and emotionally distressd. The intensity of fear and surged adenaline... set off a life-long struggle with PTSD and stress issues. I had repeated nightmares of people shooting me, trying to shoot me, threatening to shoot me, or chiding me with life threatening scenarios of dismemberment – similar to the threatening USPS mail I got a few times a week for years, that only stopped when I moved away in 1983 and began a new life in a new city, got married and was happily carrying our first child.
In Dec 1984, at 25, I got toxemia (Pre-Eclampsia) for the last month of my pregnancy that escalated and I was induced many weeks early to end a life-threatening condition for me and my child: my pregnancy was taxing my kidneys and that danger was putting us both at risk of dying. She needed to come out to save us both.
We both nearly died for a number of reasons. She with the umbilical cord around her neck twice that had to be cut many minutes before she was born. She came out blue and limp, yet got revived well within a minute (2-8 Apgar).
Me for having ridiculously high blood pressure, that could have led to seizures and death... as well as tremendous sudden hemorrhaging after the delivering doctor forcefully yanked out the placenta in order to then heroically save my life by pummeling my tender belly with his seemingly incessant violent punches to get my uterus to contract and stop shedding blood. (While exclaiming in loud frustration, "Contract Damn it, Contract!")
Just before that, I had an incredibly euphoric out-of-body experience as soon as I felt so much of my blood escape and watched the delivering doctor leap out of the way when myhuge placenta came flying out of me and sloshed to the floor. I felt deflated like a balloon that lost is air and I blissfully left my body without a care. My awareness returned to my body due to horrible smelling salts broken under my nose, and every single cell repulsed by that scent. I returned to my body being beaten by what seemed like a very bulky angry thug of a man - which was a lot of trauma to endure, expecially after just giving birth.
In 1986, I got electrocuted at work. Not having medical coverage I did not even go to the doctor. I did not know I ought to and since I “seemed” OK aside from the ultra red arm and being “unnerved” by the frightening jolt of it. I did not know any of that impact could last, nor that any help could be had.
In 1987, I went into anaphylactic shock in the middle of the night while sleeping. I woke up to a racing heart over 230 beats a minute. And called 911. This was not even two whole days past my having an allergy panel test of 96 substances rubbed into a prick-grid on my back. I was highly allergic to 94 out of 96 items. They had given me three large dose shots of Benadryl to counter act the allergic reaction that remained intense. And once the Benadryl wore off I was flooded with what allergens remained in my system and my heart raced and my blood pressure dropped to 40/30 and I was rushed to the emergency room... where they were unsure what to do. Emergency medical team could not fathom it had to do with the allergy tests performed 36 hours ago. Hmmmm.
In 1989, I had a bout of Hypothermia while camped out at the beach on wet sand without insulation from the cold that arose when the tide came in. That was a stupefying event. One I could not muscle my mind over. And it led to a lot of escalated systemic sensitivities.
And in October, that same year during a time when I was a vibrant Technical Support Engineer in the computer industry, doing technical support over the phone and managing returned products in need of repairs...
The night of the Loma Prieta Earth Quake, I had some kind of stroke in the middle of the night and woke up listless as if I had had a frontal lobotomy.
I suddenly lost about 85 % of my cognitive abilities. Though I did not know the extent of it for many months, and had no idea the difficulty with speaking until I tried to talk and discovered I suddenly stuttered and could not express myself with spoken language very well most of the time. I had trouble finding or speaking words… and easily lost my train of thought mid-sentence... and drifted off to a spacey daze not knowing I had even said anything until others brought my attention to what I had said, that I had no memory of mentioning.
What also arrived with that brain malfunction was sudden ultra sensitivity to lights, sounds, smells and commotion or chaos. My skin crawled with phantom sensations of pains and tickle of no outer stimulation. When over stimulated which happened easily, from benign things such as the lights from reflected sunlight, or from blinking lights on shelves at Safeway. Or from the adds on the floors or in the carts. I felt baraged. And a sudden reactive wincing of all my facial muscles would follow in powerful full facial contractions I could not make stop. I would involuntarily tremble and shake and break out in a cold sweat and leave the store after only a few minutes. I learned I could not shop there, nor be in crowded places, or ever go anywhere without very strong sunglasses, and ear plugs which I wore in restaurants, on trains or buses - everywhere including at dance.
I was very fragile and terribly confused about everything. So much so, that I did not even know if I had always been like that until years passed and I recovered enough to look back on my life and really get how much had changed and what abilities were somewhat better, which took about ten to fifteen years!
I still struggle with that impact of that event. My sensitivities fluxtuate yet arise when I get stressed; the cognitive deficit problems also return. So I am phobic about high stress because it makes me inadvertently stupid and lost.
I could not think math... or calculate numbers at all and stared blankly at my checkbook no longer knowing what I was suppose to do to balance it.
I could not get help from doctors because I was unable to articulate what was wrong. I could think most words yet not make the words come out of my mouth. And instead of being able to speak, I got so distraught, I cried. They prescribed sessions with a psych doc - potentially helpful but it did not address any of the main issues at all. I was not simply an emotional mess, I was distraught for fair reasons.
I did not know about traumatic brain injuries, brain infarctions or strokes then - so I could not suggest to a doctor what I thought might have happened. I learned about Traumatic Brain Injuries and the symptoms that matched mine, from massage clients who had them as well, from impact injuries or car accidents.
It was not until after I watched Jill Bolte Taylor's TED talk: "My Stroke Of Insight”… (in 2006?2008?)… that I further understood something similar to her stroke had happened to me nearly twenty years earlier. https://www.ted.com/talks/jill_bolte_taylor_my_stroke_of_insight
What was even stranger to me, was most people even my family had no idea something had happened, that I had been altered; that I was struggling to manage and got exhausted easily. That I went from being confidently extroverted to being painfully introverted - and hiding my issues to not worry others.
Though I was slowed down tremendously, I was still a single parent taking care of my then four-five year old daughter, and driving.
I had no idea any help could be had. So I did not seek it until I understood better what might have happened, which was nearly twenty years later. And when I did try to get a brain MRI the medical assistant at Valley Medical Cener threatened to medically revoke my driver's license! Which was so distressing I left without getting help.
I did not recover well nor quickly it was not a flu. And I had to cope with the new degraded 'normal'.
The stress of not being able to do my job anymore forced my taking on a different role, and then quitting a few months later because I could no longer handle any stress. This was not simply a choice to seek different livelihood; it was a life preserving move on my part to do something completely different that did not rob me of my ability to think and function. I was attempting to minimize symptoms.
Which led me to seek something that did not require talking... or daily ressure in a stressful environment.
I got hired at WaterCourse Way as a Massage therapist where it was peaceful and serene, where I could use my healing hands, and my previously earned massage certification (1980 - in Maui), and discovered people were glad I did not talk much.
Losing that high-tech-line of work added new stress of financial insecurity and no paid vacations. Though I traveled for street painting weekend events, I no longer took vacations, I could not afford time off.
From that point on, I no longer had employee medical insurance coverage. And I did not purchase one out of pocket because I had too many preexisting conditions that would not be covered no matter what I paid a month... the going rate was $925/month.
So all medical services were either out of pocket for preferred private doctors or through Valley Medical Center, or PP, or free/low-cost clinics, and only when I really needed help. I had incentive to not seek medical help unless I really needed it.
It was an interesting time. For decades my health insurance was an intensive self care practice of eating well, regular daily yoga practice and yoga classes, and staying active and healthy.
In 1993 my partner Kirby Wayne Graham, a man I cherrished and wanted to marry, drowned in the bay while wind surfing. This set back dropped me into a tail spin of grief that would not let up for many months. By the time I got help from a local acupunturist Hideshiro Minami, my whole system was depleted in many areas. His treatments were so helpful I saw him regularly every 2-5 weeks for ten years!
In 1998 I had a car accident and suffered bad whiplash.
2001 I broke my tailbone snowboarding, and injured my mid-spine, and could not comfortably sit or walk or dance for a while.
2002 - whiplash from a car accident after hurting my back while moving.
I eventually healed... and was enjoying our weekly 5Rhythms dance class community...
Just as I got certified as a yoga instructor... while I was at the peak of my health and well-being...
Then, twenty years ago... in 2003...
While on a hike in Foothill Park, a tick embedded in the middle of my back and I had to have someone medically-inclined to carefully dig it out, because a friend who tried was unsuccessful.
That is how I discovered Damon Miller a Naturalpath/MD in our dance community. He dug the tick out of my back, which by then was broken open and in peices.
And because we were both concerned about the potential of getting Lyme Disease (since a warning was posted at the trailhead)... I paid Igenix Lab on San Antonio Road nearly a thousand dollars to test the picked-out tick remains for Lyme Disease and all other known tick-borne diseases. I do not remember all the results... but most were negative or inconclusive? Perhaps the tick was not preserved well enough?
Yet before too long, within a month... I knew something was up when I got really sick on too many levels including flu-ish symptoms and stiffness in my spine and joints.
Shortly after, I developed terrible gut problems after barfing all day on a an ocean bound fishing boat for twelve hours. And within a few weeks everything I ate burned like fire going in and out. What came out looked like what rotted in a compost bin, and my gut was bleeding.
I experienced a sudden weight loss of fifteen pounds in a couple of weeks along with muscle wasting... I went from being strong with tremendous vitality to extremely weak and shaking wildly in downward dog pose and passing out in my yoga classes long before Savasana.
At 5'6" tall, I went from 125 lbs... to below 110 lbs... and felt intense fatigue that prevented me from maintaining my standard daily Ashtanga Yoga routines... that I had done for over ten years of practice.
I remember fellow students in my Yoga Teacher Training, commenting,
"Wow! What are you doing? You look great!!!"
I could not even answer. I was not on a diet. I had no need to lose any weight. I was stupified with teary eyes. How could I tell them as we celebrated the end of our training, that I was bleeding out my backside... and I thought I was dying of stomach cancer!!!?
I couldn’t tell them. I just stared in secret pain of worry... and did not want to my teary worried eyes to be captured in the group photo. I did not want to preserve that moment in time in a photo. A photo of happy healthy people, while I incontrast looked so gaunt, exhausted worridd and unhappy.
My health spiraled fast. I solicited my acupuncturist childhood friend Holly Guzman in Santa Cruz for support. (She is a master and a godsend!) She sent my stools to Great Smokies Lab. To discover I no longer made stomach acid to digest food. And instead it putrified and rotted. And my gut became a compost bin of rotting food. My intestine was overrun with many bacterial infections including staph.
Prescription drugs were too expensive and had serious and dangerous side effects. So I began the long haul of alternative treatments for gut restoration, and maintenance and implemented a gazillion supplements and tinctures to address all that was awry.
Nothing happens quickly. It would take time, years. I needed to be patient and meticulously focus on the fluctuating need for hydrochloric acid (HCI). It was hard to get the correct dosage right every time, my need for it seemed to fluctuate. Too little led to burning of putification, and too much also led to burning of toomuch HCI - an insatiable need to eat more food.
By this time I was struggling with a number of brain processing issues including the backward sequencing of activities... and was losing coordination; I got more and more clumsy with items in my hands, I could no longer judge distance pouring into a cup and I spilled a lot of things.
A friend cavetching about similar symptoms had been diagnosed with MS… and then months later Lyme Disease which can present with MS symptoms.
And by 2005, I had far too many strange neurological symptoms. I got help from Damon Miller and I got tested for Lyme disease... Along with a clinical diagnosis, what showed up was Long Term Advanced Neurological Lime; evidence of a far longer-term infection - of ten - twenty-five years or more, not a recent exposure from two years prior. Though that might have also set off the intensity, the IGG and IGM bands indicated long-term antibodies not short term recent exposure.
After doing research for about 8-10 hours a day for 2-3 weeks it was clear to me that Western medicine antibiotics did not have a great track record for significantly CURING Long Term Advanced Lyme Disease.
So with Damon's support, I opted for Lee Cowden's alternative protocol - created by someone who had been healing people for many years.
And I had to face that is would be a two - ten - years - to life of treatment depending on how quickly treatment could put my symptoms in remission.
The worst part was this: If you are successfully treating Lyme disease, you do not instantly feel far better: you feel far worse!!! Due to the “die-off”and how much the disease remains and meds pollute your system you terrible most of the time, what is experienced instead is labeled "Herxheiming" a sensation of getting much worse is an indication the treatment is working. So I tolerated a lot of the discomfort within the faith I would be better in the long run!
And I had to get used to a two-and-a-half-hour morning regiment of time supplements and tinctures taken in the morning and then mid-day, and afternoon, and evening... Every single day. Some I had to rub on my belly skin. Many had to be before food, some separate, others after food.
It was an intense, regiment. Costing about a thousand dollars or more a month.
Treatment was terribly occupying. I wanted my life back. I wanted my freedom from such a time-consuming daily regiment. I wanted to go back to waking up refreshed and putting my shoes on and running the dish... or biking the Portola Valley loop.
In 2006, I crushed the pinky and ring finger on my right hand and damaged the nerve that goes up my arm by accidentally catching it in a slamming car door out at the lighthouse in Point Reyes, while a friend and I were exploring that area in the middle of a fierce 90 miles an hour wind and torrential rain storm. My hand was gloved, and blood soaked through the glove. We were 20 miles away from civilization and I feared the tip of my finger had broken off due to the pain and and simultaneous lack of sensation.
Eventually I would learn the next day, that I had in fact broken the tip and deeply injured the nailbed. Yet more so, the damaged nerve resulted in a Chronic Regional Pain Syndrome… for which there is no cure. You just have to find ways to keep addressing the ongoing sensitivities and mind boggling disruptive traveling pain sensations and sensitivities. I treated it daily with supplements and sublingualr GABA Calm. But any new restimulation of trauma to the body or stress can fire it all back up again.
The broken bone did not heal for many many months. It was soooo painful all the time that I was ready to have that pinky finger on my right hand amputated. Similar to a famous football player who around the same time, did exactly that. Because the pain was excruciating and it was interfering with his game and life.
I was a mess from on-going excruciating pain. That pain lasted about 3 years.
I spent six intense months getting support healing my dominant artistic hand. Nearly hand a rod surgically installed… but then chickened out.
Finally got my chiropractor to let me use a cold laser on it along with a tens unit to get the unhealed bone to mesh and create the matrix it needed to mend.
Just about the time the nerve reconnected and bone repaired…(6 months later)…
My dad got deathly ill and I dropped everything to go to Marin to take care of him. All my time and attention went to taking daily care of him… He had an epidural mass, and infection in his spine. And needed intravenous antibiotics for many months to recover. I managed to use my right hand enough to change his PIC line daily. He then had cataract surgery… and never quite recovered… due to then having Leukemia…
It was a very difficult time of me commuting back and forth from the north Bay Area. I stayed up there a few days to weeks at a time.
Then his precious partner of 22 years, Liz, who lived across the bay in El Cerrito, yet spent many days a week together, had a sudden heart attack in the middle of the night and died. Which left him in such painful grief he no longer wanted to live, and he stopped all medicines and died a month later, Sept 12, 2008.
Sooooo, we put on two memorials in two months. And began clearing out his house.
While I was still recovering from losing my dad and step mom… six months later my own landlord passed away and I was forced to move.
I was blessed to get this house in my cherished neighborhood and make it home. And for me I was hopeful I would thrive settled here caring for myself.
Yet in the nearly fourteen years I have been here…it has been a rocket ride of issues and stress.
I got bit again by another Lyme tick in April 2010. And went on western meds due to bullseye rash, and deciding to hit it and past infection with harder guns. Out of pocket medications and doctors appointments cost me about $3,000. a month. I spend my inheritance on trying to out run a disease. I attempted to recover completely before my money ran out.
Little did I know that would be a serious demolition of me and my connective tissue for blindly following a recommended and prescribed regiment of 4-5 heavy dosed antibiotics from Teddy Rinker, that included Ciprofloxacin - medicine (not recommended for lyme) that seriously ruins tendons. I was erroneously on this dangerous drug for 2.5 years before I understood the damage it was doing.
When you are sick with Lyme disease any and all symptoms of any kind can be attributed to that disease - it mimics many and it would be hard to know if you have any other serious issues because doctors will no longer look further, and suddenly you become a patient that has too many strange issues and their eye glaze over and ten minutes at a doctor appointment is not sufficient to thoroughly evaluate and address anything.
This is why my home became my own private hospital. My sacred healing place…
By then end of 2012, I did run out of inherrited money to put toward expensive treatments and I stopped all western medicine antibiotics... at a point I was so incapacitated I was guessing the next place I would be was a care facility because my tendons were so rigid and stiff I could barely walk assisted with a cane.
My precious healing sanctuary home is now a place I can no longer afford to remain … due to the pandemic shutting down two careers… and my health failing further, post kidney cancer removal, (Oct 2020)… and breast lumpectomy, (Aug 2021)… and fatigue and debilitating arthritis setting in to the point that my demolished cartilage in both knees is now painful bone on bone on both knees, making walking and standing terribly painful.
I am due to have two knee replacements in two months: June 19th 2023… who knows if this will lead to a restored life - eventually… or whether all the other troubled inflamed joints will again flair up terribly –
I can only hope, and remind myself there are many levels of healing that are not simply physical.
Prayers and good wishes welcome.
Thank you for reading this far...
And for those who would love to help:
Muy finding and securing affordable housing is the top priority.
Second will be recreating a sustainable life once I heal my replaced knees.
Also... in letting go of all my life was... as a creative with space to paint and create...
I am trying to sell all my stored artwork to help repay my landlady for owed back rent.
And Here is my 'Go-Fund Me' page...
https://gofund.me/91e1b11c
Comments
Post a Comment