As I rummage and ruminate, categorize and discard, too many items, and thoughts, long of little utility, to you or I, though stubbornly occupying space, in my physical and internal environments, I am thunderstruck! …with that which we pay lip-service to; as a matter of course, in our excessive, daily rabblings and babblings; but rarely to never, truly abide by… . And of a sudden, nothing matters! Nothing; …with the exception, of how we choose to utilize, This Moment. And of a sudden, in this temporarily, to the outside world obligation-less life, I find freedom. ________________________________________________________ With boundless love, ~Marcela: choosing to live well, in the midst of my own, and our collective, uncertainty. March 24, 2020.
There have been others since I came to live here, but you commanded and kept my attention, from the first time ever, that I saw your extraordinarily bright, red paint.
And since that moment, when you dwarfed everything around you and obligated me to see you, I have wanted to get closer, wanted to get a better view, and always wanted, always yearned, to see you again.
I needed to experience your power, relentlessly, and with great fervor. And for weeks now, I have been captivated by you, visually, psychologically, emotionally, and with irrevocable commitment.
And I have compulsively sought you out, with the diligence and precision of a skilled stalker, from every vantage point, in this hilly town.
For weeks now, each and every morning, I have clambered groggily up to the step-stool view in my sleeping chamber, because knowing you were there allowed me to face another day, and I have been awed by the turmoil you create, deep, so deep inside me.
For weeks now, each and every evening, no matter how fatigued, I bid you good night, because you give me some measure of consolation, succour, in my solace-less world.
You have represented all that is true about me, the contradictions, and I am as contentiously conflicted about you, as I am about most things.
Your intensity screamed to my own; and like the others in the bay, like me, you are a political and personal hot-potato, and I love you-I hate you, come here-go away, fuck-off, no! fuck-on!
And you present me with a familiar quandary: what is right for the world around me versus what I get, what I need, from you, from the world around me.
And so by direct extension, you have been a secret, conflicted indulgence, analogous for me, to beautiful footwear, but made in China by slaves and their enslaved children.
And I have viewed you with my naked eyes, and through binoculars, and I have captured you with my camera over and over again, from my step-stool view, from the highway coming home, from my excursions on the hilly trails, and from my perambulations about the town.
And this morning, when I opened the curtain to greet you, you knocked the breath right out of me, for the light had you glowing in shades of gold and pewter, and I was mesmerized, shaken to the core, by the beauty of you, and the light, the indescribable, iridescent light, and the way you played together, with, and in the sea.
And I remembered Barrett-Browning, and knew I will do well to concern myself with, fly toward the light, despite additional bruising of my oh-so broken wings.
And my despair collided head-on inside me with the memory of who I am, the shine and vibrancy used to describe me for decades by others, now hoarded away far too long, by me, recently, because: pain.
And I wonder; if like me, despite meticulous maintenance of mechanical parts and attention to aesthetic details, you may meet an undignified, rusted out, abandoned, demise?
But your light rouses me from the melancholy of this early morning reverie and while you are neither Sunflower nor Water Lily on a A Sunday Afternoon on the Island of La Grande Jatte, van Gogh, Monet, Seurat alike, would have been as awestruck by that light show, by your radiance, as I.
So it is little wonder that this evening, upon reaching the place on the highway, the place where I always spy you first, returning from my hated-reality, hot tears burned my cheeks with a vengeance that took me by surprise, but at the same time, not at all.
For I realized that you had left me, as I knew you would; suspected this very morning, that today might be that day, the day I find you gone.
And all that, in a painful morning stupor, while bedazzled, so very smitten, by your glow, your nod to me, to heed Browning’s wise words, to keep fluttering my wings, toward the light, toward my light.
And I am so very grateful, to me, for all the times I hunted you down, from yet another place and angle. I am richer for having enjoyed you, and you fueled, no, you ignited, new fantasies of leaving, to live my art, whenever my eyes, my heart, the core of me, met your steel girth, your vibrant and vivacious red coat.
And I never coveted you more than this morning, never appreciated you more, than in those parting moments, when you willfully, boastfully even, occupied that space, your space in the vast vast sea, wearing the gold,
of the Queen you are.
~Marcela: one skin, 58.7 years, life/version 19.9, and counting.
March 04, 2020
One of the greatest things I have learned in the course of my entanglement with the Sailor, is that true intimacy, and anything even resembling love, of any quality or depth, in any kind of relationship, cannot, absolutely cannot, be about ownership, or the expectation of filling other’s voids, needs, even.
His language is a little more flowery than I am generally fond of, but he was a very, very wise man, I’ve been reading him since I was a kid, but only relatively recently, come to appreciate, understand, his teachings:
“Let there be spaces in your togetherness, and let the winds of the heavens dance between you. Love one another but make not a bond[age] of love: Let it rather be a moving sea between the shores of your souls.”
Acceptance, of what is, right-the-fuck-now, OK OK, after letting it sink in and everything that goes with that, has been one of three key strategies, that have allowed me to focus on what I need to do, am able to do, is within my power to do, in my current, and really, any other, battle, Bitch-Slappy life circumstance, no matter how heinous it is.
The other key strategy, is Clearing my path along the way, of any remaining detritus, internal and external, that would hamper my progress. Progress as defined solely by my three remaining personalities, me, myself and I. Even if that clearing involves long overdue dust-bunny collection in the deep dark ‘false loyalty’ corners of my world.
Acceptance, in my world-view and definition, does not equal ‘liking’ any given circumstance or situation, does not mean co-signing very bad, often very harmful behaviour, on the part of others, and certainly, it does not mean that I don’t get angry about shit. It means that when I accept that this, whatever ‘this’ is, is happening this way, right-the-fuck-now, I create the space I need, to take whatever next step I believe to be the right one, for my particular, ever-changing circumstances, needs, wants even.
This then by direct extension, leads to a third key strategy: Know thyself first and foremost. As horrific as this series of systemically heinous, physically debilitating, psychologically terrifying and emotionally taxing events have been*, even with all the various personal work and other bitch-slappy events I have navigated, triumphed through over the years, as horrific as this has been, nothing has taught me more about myself, who I am at the very core, what and whom I can and won’t tolerate and have in my life, how I do what I do in my life, and how I will go about more clearly identifying, creating, that which I desire, for whatever time I have left in this skin. It has also shown me that many of the dust bunnies, have, have always had, a very skewed and just plain wrong concept, of everything me, or not bothered to notice that things, people, change over time, through continuing personal work for sure, but most especially when lifey-life-bitch-slapping forces my/our hand(s).
Like spidey outside my front door, I have learned that a mostly invisible, deceptively strong web, of internal and external resources, and hard, incessant, ‘webbing’ work, is a smart strategy, now, as it always has been. But never smarter, in a world and time where the expectation norm is silver bullets, blaming others, and money for nothing, that elusive pot of gold… but some of those, are other thinkings out loud… So for now, I will bid you a fine day, and continue to utilize the ACK method of navigating this thing we call life.
~Marcela: webbing like a madd-woman, slapping back the Beasts, and sweeping up the dust bunnies.
September 18, 2019
*A ccept what is, right-the-fuck-now!
C lear your path of detritus and dust bunnies lurking in dark corners!
K now self, learn self, never stop learning self!
**No-one in my ever-shrinking circle, no-one but my Naturopath and I, knows the true extent of what this has done to my body and capacities. And perhaps my many words here, and in other forums in recent days, are a screaming testament to the effectiveness of the new/old drug I am treating with (very off label, experimental use for me and others waging Beast battles), because just a few months ago, I was heading, at an alarming speed, toward complete inability to remember, or make words come out of my mouth, complete inability to string even the simplest sentence together on a page, or have a coherent thought, never mind the heart/vision/joint/muscle/kidney/neuropathy and myriad other ‘stuff.’
Writing and photos: All rights reserved, please share with attribution, because plagiarism sucks the big one, and not in any good way, at all.
(I originally posted this to a forum I belong to, full of folks just like me, desperate to Kill the Beasts. Many, have been on/off horrendous amounts of anti-biotics and anti-malarials/parasitics for months, years, decades, only to kill the very thing we need to heal anything, a healthy gut/biome, and to get sicker by the day, many to the point of absolute disability and with no quality of life. Many of the younger folks inherited it in the womb and have been sick most or all of their lives. But apparently, congenital and/or persistent Lyme & Co. do not exist and antibiotics are the cure. I refuse to use the word chronic, for it is a complete and utter misnomer for this set of complex issues, but that is another elephant entirely. I personally know at least one person who has been absolutely mis-diagnsed with Parkinsons, and no-one want so hear that that Parkinsons meds are not working because she doesn’t have Parkinsons, she has Lyme, and likely other infections. MS, Parkinsons, Alzheimers, many others, are often misdiagnosed in people with Lyme and Co-infections like Babesia and Bartonella, because the Bugs impact the same systems as these diseases. Testing in these people generally comes up negative because we test for antibodies. A body under siege, a body whose immune system is broken, cannot produce, cannot show, antibodies in the blood. They, these bugs, wreak havoc on every single life-sustaining system in the human body, and they are neither simple to diagnose, nor easy to eradicate.)
No Silver Bullets
Following weeks of various preparations (body/food/products/home), I took my first dose (125 mg) at 10 this morning, of this very old drug (almost 70 years and counting since approval for the pharma-market), with many new, as yet fairly experimental, off-label uses.
Providing all goes well, I will be taking 125 mg every three days for the next two weeks and then adding 62.5 mg every two weeks, and later, adjusting the dose frequency, until I reach my maximum daily dose of 375 mg, which my ND and I figure I will stay on for at least a couple/few months. I am not under any illusion that this will be a ‘quick-fix,’ or for that matter ‘the fix,’ but I have faith in my own capacity to persevere, and I have faith in the useful support I have found here and elsewhere in my world. This is not my first rodeo with a ‘really big lifey-life bitch-slap,’ though it is perhaps in the top 2 on the F-UGLY list, one of the most heinous of the heinous-nesses I have waded through to date, and for so many reasons, for real-for real.
If I have learned anything in the nineteen-ish distinct and wildly different (from one another) lives I have lived in this one skin, in several countries on 2 continents, over 58 years, and through (too) many lifey-life bitch-slaps, traumas and dramas, self and other inflicted, it is this:
There is no getting over, no getting around, no getting under, anything. There is only through. Shortcuts, at least for me, inevitably, turn into the longer, more painful, more laborious, more expensive (monetarily and otherwise), way around.
There is little space left in my world and person for anything other than taking charge of my own life and of course by direct extension, my health. The only way I know how to do this for myself or for/with the people in my ‘driven by human-suffering’ work-world, in one of the so-called ‘helping professions,’ is by arming myself with as much (useful and credible) information, by utilizing critical thinking skills, by exercising prudence, thoughtfulness, and by accepting responsibility for that which is mine: my choices, based on the information I have at any given time, in any given circumstance, and by not enmeshing myself in/with, that and whom, which are not my concern.
This does not mean that I am not frustrated as all f*** with my experience and the level of ‘are you kidding me,’ regarding the bugs who have taken up un-invited and rude residence in my/our bodies, but I am challenged with being furious, or blaming them anymore, because at the end of the day, they are just trying to do what we all do: survive, literally, by feeding off another living thing. And they, unlike humans, do not have the ability to think or feel. They are microbial-doers, doing what microbial doers do. Humans on the other hand, think and feel, and then do, often despite clear and present evidence that they ought to think, feel, and do, differently.
None of this means that I am not appalled, that I am not saddened, that I am not broken-hearted beyond description at the levels of ignorance, incompetence, conjecture, conflict, confabulation and all other messes in between, around these bugs, by both the mainstream and naturopathic medical communities, and their various offshoots like research and pharma, as well as Jane and Joe Average, and our, and the people closest to us, suffering (often for years, decades), as a direct result of all that chaos.
This does not mean that I will be ‘happy,’ for having had this experience, and it is highly unlikely that I will ever be ‘grateful for it,’ specifically, once I have enough energy back to do more than go to work to afford the gas to get there, the roof over my head, the food in my fridge, and the pricey protocols and supplements that keep me on my feet (barely), just so I can go back to work to run the cycle all over again. But, it is my most fervent belief, that a great deal of my physical, emotional and psychological suffering has only been exacerbated by the ‘fury’ of it all, at it all, at them who don’t, won’t, or can’t ‘get it,’ whether ‘it’ is related to the bugs, or any other lifey-life-bitch-slap in my more recent or further pasts.
This does not mean that I co-sign, sanction or accept the really bad, bordering on libelous actions and non-actions of my ex-GP, and all the other doctors out there who are quite simply, WRONG. It means that I know better than to expend my oh-so precious energy at trying to do anything about anyone else, what they do or don’t believe (in), it means that the only thing I can do about any of it, lies in my response to it, what I choose to do with it, how far I choose to allow unhelpful feelings to run it, or not. To that end, I have chosen to disengage, even if too late, from some of the conversations I found unhelpful here and in other parts of my life, and have tried to walk the talk I speak of above, to the best of my innately flawed, and acutely human, ability.
I cannot articulate strongly enough, my gratitude for this group. I have prepared as much as I humanly could under my current physical, psychological and financial circumstances, and I could not have done it half as well without some of the great information and support in this forum. I go into it knowing that I have done what I can to provide myself the best possible success given all of the unknowns, the complexity and myriad variables that are inherent to this treatment, these Beast, and most importantly, I know that there are few, if any, silver bullets in life, most especially in life with Lyme and Co.
Thanks for helping me start, I’ll post updates as coherently and as often as possible. I work full time in a fairly high-maintenance job, with a commute, and my work-hours spent supporting folks in the midst of their various lifey-life bitch slaps, with both of us trapped in most inadequate systems and resources. So in the event I am not present here as often as I would like to be, please know, that I appreciate so many of you so very deeply! I have also learned to set and respect my own boundaries (because they are there to ‘keep me in, not others out), and there are times when I simply cannot engage with anyone, in the e-world or in-human, in regard to any topic, never mind foraging in the deep, dark forests of the Beasts occupying my (and your) body, and the entirety of many of our lives.
Marcela, doing battle with some mighty tiny, but mighty powerful, Beasts, and the systems around us in the world.
I understand, why people want to, or do, take themselves out, choose to end their lives, their suffering, because of this thing, Lyme disease and its co-infections like Bartonella and Babesia, to name just two (see ref. 1). I understand, why it is a viable solution, to end the degradation, dismissal, derision, disrespect, and disdain, of not only those working in the sick-care systems (worldwide), but even of folks in their closest circles, and even of those who also suffer, or have suffered, these illnesses. For the handling of these illnesses, the myriad misconception and full-on ignorance of them, in both the mainstream and Naturopathic communities, has created multi-systemic (political/medical/personal) discord, disagreement, controversy, mis- and non-diagnosis (2) & (3) and I understand, for I am one of them.
I understand, because the disease(s) in and of themselves and the havocs they wreak on every system of the human body are brutal, serious, life-altering, often crippling, potentially deadly, and they manifest differently in different humans, depending on if/when they were diagnosed, if, they/we were treated, and with what, and when.
I understand, for just like me, they are skilled and adaptive survivalists, these bugs; transmuting transformers, and they play hide’n seek with the adeptness and skill of a lion stalking its prey in the Serengeti. They are beasts, for real-for real. Personally, I have an ever-changing array of symptoms which at any given time include neuropathy and other neurological issues, frightening and serious heart palpitations and other heart issues, debilitating kidney pain issues (I’ve literally peed blood more than once), joint issues, breathing (constant air hunger) issues, blood (anemia) issues, crippling pain issues, a multitude of serious vision issues, pounding pressure in my head issues, and white lesions in my brain documented (by an MRI) and categorically dismissed as ‘nothing to worry about,’ by both a Neurologist and my (ex)GP. And I suffer a hundred other, issues, and my scores on an empirically tested-for-validity screening tool used for clinical diagnosis of Lyme and Co. (4) & (5), were OFF the charts, literally, off the charts.
But clearly, none of this is brutal enough, for my (ex)GP to, and I quote, “believe in chronic Lyme.” Chronic is her word, I never mentioned it in the endless, always-ending-in-tears-in-my-car appointments with her (and others) since last December, and it is not brutal enough for me to get any MD to a) retest me for Lyme and Co (see below for more on that entire mess), and b) to engage with me in anything more than absolute and utter dismissal once they hear that I am working with someone else, it is not brutal enough for any of them to follow me on this unplanned and unwanted journey, because I need regular blood work and ‘someone else,’ is not allowed in our flawed system, to requisition it.
The sole reason that I remain walking and talking, at times barely, is because of that someone else, my well-informed, open- minded, and constantly curious Naturopathic Doctor. She understands these bugs (as well as anyone really can at this point), and has done the work to have (pharma) prescriptive rights, at least as far as our flawed system allows any ND to have those rights. The sole reason I am able to function at all, is a Naturopathic doctor whose own GP has labeled her as ‘just an anxious young mother,’ because she too, has Lyme disease. Her own child, may have congenital Lyme disease (6) & (7). Unlike so many of us, and in her own words, she had a ‘screamingly positive lab test,’ and like so many of us, DESPITE that, she is just as dismissed, just as derided, just as disrespected, by her own GP.
I understand why people walk out of Dr’s offices crying because their tests came back negative, I did, because it means that they/we have nothing, nothing at all to back up, effectively treat, their/our mile-long symptom lists (4), and their/our ever deteriorating physical, financial, psychological, spiritual and emotional health. The two-tiered testing system in Canada/North America is flawed beyond belief for a thousand and one reasons, but you can read more about that for yourself in reference (8).
And even for the folks who manage to get a reasonably accurate diagnosis, or are lucky enough, for it is truly a lottery, to have/find an open-minded enough, never mind Lyme-literate MD, treatment is not simple or straightforward by any stretch of the imagination, because ‘transformers, hiders, mimickers, the ultimate eluders, like me, the greatest of great pretenders’ (9). For that is what I do, every day, pretend that I am alive. I pretend it with my work-folks (clients/patients), I pretend it with my colleagues, I pretend it at the gas station, at the grocery store, and I pretend it during the rare-to-never interactions I have with friends and family.
I understand because adding injury (literally) to insult, many of the known and widely used pharma interventions only serve to send the beasts further into hiding (10) whether via the bio-films or cysts they create, which (the hiding) is then too often perceived or labeled as ‘remission,’ cure, even. More often than not, the antibiotic and other drug cocktail treatments used are creating an environment in the body that is ideal for what are known as chronic, persistent and/or late stage Lyme. A further complex reality is that (too) many folks are not host to just one bug, and because there are many strains, of each of them, and not all of them are bacterial in nature, Babesia for example, is a Malaria like blood parasite, so by direct extension, the beasts are extremely difficult to a) diagnose correctly and b) treat effectively, never-mind eradicate.
I understand, because like so many others, I have exhausted my financial (never mind the physical/psychological/emotional) resources just to stay on my feet, and while many of the pharma and other drugs I have used/am using have been/are, at least partially doing their job, a job, I am beyond exhausted by literally working full-time just to work full-time just to stay on my feet, and barely, keep a roof over my head. And while I understand, fully, why the true eradication of these beasts is a marathon and not a sprint (see ref. (8), (9) and (10), like so many others, I question almost daily, whether I have anything left, that is worth continuing down this, the ugliest, the most contradictory, most complex, most debilitating of rabbit holes I have yet fallen into, and we know I’ve been down a few, self- and other inflicted, over the years.
I understand because, how we are treated, my co-sufferers and I, mega-thousands in the groups I have chosen to engage in alone; dismissed, humiliated, patronized, ignored, mis and undiagnosed, is perhaps the greater travesty, and tragedy, the most savage brutality, of it all.
“In the fullness of time, the mainstream handling of Chronic Lyme disease will be viewed as one of the most shameful episodes in the history of medicine because elements of academic medicine, elements of government and virtually the entire insurance industry have colluded to deny a disease.”
– Dr. Kenneth Liegner (11) & (12)
I understand because along with (one) of the many known bacteria that cause Lyme disease, I am very likely host to Babesia, and possibly other, Beasts And please hear this: I am not contemptuous of the Beasts. The bugs are only doing what any living organism, including humans, does to survive; we feed off another. The damage inflicted by the (in)humans, however, those in positions of power that they either lord over us, or refuse to use as a method, a tool to support us with, is a bigger affront and travesty than anything the bugs are doing, for they do not think or feel. The (in)humans, however, make blindered, boxed, defensive, uninformed, CHOICES. Choices that contribute to the ruin and relegation to bare survival, of (too) many a human life and potential, just like mine. It is nothing short of hilariously, painfully ironic, to the point of utter and complete idiocy, that the roof over my head, the food in my fridge, the pay in my bank account, are supplied by, the very ‘sick-care’ system that brutalizes me every.single.time I have to engage with it, the (in)humans in it, on my own behalf, in regard to this illness.
I am NOT, let me be very clear, NOT a fan of Donald Rumsfeld, and it makes me a bit sick to repeat anything he has said as worthwhile, but in the context of Lyme and its many complexities and co-infectious friends, it fits because a position of not knowing everything about anything, is always a good way to stay teachable, and to my mind, always desirable, but most especially so, within the context of this, my and others’ current reality.
“….as we know, there are known knowns; there are things we know we know. We also know there are known unknowns; that is to say we know there are some things we do not know. But there are also unknown unknowns — the ones we don’t know we don’t know.”
I understand why people exhaust their resources, all of them, trying to know more, trying to get better when convention has failed us at every.single.step of the way. I understand why people from every walk of life and in every socio-economic and cultural group and status known to human kind jump onto every mainstream and alternative therapy bandwagon. And I understand why at the end of the financial, physical, emotional, psychological and social-support road(s), when our bodies, our minds, our hearts, our relationships, our self-worth and our self-esteem lie broken and bleeding on the ground behind us, people want to, and do, take themselves out. I understand so fully I can taste it, the why, of people choosing to end their lives, because of this thing, Lyme and it’s co-Beasts, the sick-care system, the rabbit holes of social-media ‘medicine,’ and the (in)humans, inhabiting all of it.
None of this means I want to kill myself, or have any plan to do so, for I do NOT. It means I understand why people want to. It means I understand why they do (13). I always have, in regard to other traumas in former incarnations of my life in this skin, but never this deeply, this profoundly, until now. And if you have read this far, and have at least taken a peek at the references I have laboriously and purposefully chosen for you, out of hundreds collected since last December, you will, I can only hope, better understand me (and others), where I’m at right now, why I am exhausted by the diseases, as much as I am by having to become my own doctor and researcher so much of the time, and what my next step will be
Any and all comments that I do not find helpful, or kind, will be unceremoniously deleted, and the commenter’s presence in my life, in electronic and/or real-realities, just as unceremoniously, dismissed. That, is how much space I have left for people with anything but true compassion, empathy, and even more importantly, REAL critical thinking skills.
All my love to those of you who continue to qualify in the desired categories noted directly above,
August 11, 2019
Postscript: I will not, cannot respond to, and will delete any questions and/or messages specific to my illness and/or treatments, or who my ND is, and will write a separate piece in the near future with a timeline of my undesired acquaintance with these Beasts and what I have learned, what I have done/am doing about it, along with my anecdotal evidence of the efficacy (or not), of any and all of it to date. And while I want to support others in this same leaky boat, and it is most certainly a part of why I went to great lengths to put this together in the first place, at this juncture anyway, I am literally just barely keeping my own head above water. So if you are in my boat, thank you, I love you, I get it, but I can only help myself stay afloat in this moment.
My oppositional flailings to the expectation-less relationship you desired, have inadvertently weathered my person into a deepening of spirit, reminiscent of the sea-years etched upon your face dearest Sailor. With the persistence of waves on stone at the seashore, these flailings and failings have smoothed harmful rough edges, jagged bits of a younger, old me no longer useful to anyone. And I am grateful. Not despite, but because of, that which my net failed to capture. ~Marcela: version 57.9 despite myself. June 22, 2019 __________________________ "Let there be no purpose in friendship save the deepening of the spirit. For love that seeks aught but the disclosure of its own mystery is not love but a net cast forth: and only the unprofitable is caught." -kahlil Gibran Interestingly enough, I deliberately cast a net a few years ago, and in so doing, despite my oppositional flailings against its very nature, the 'catch' quite inadvertently developed, through a love and friendship unlike any other I have known, into a profound deepening of my spirit, one not unlike what Mr. Gibran speaks of. ~M.Y.M. Kahlil Gibran quote from Google Search Poetry and Image: All Rights Reserved Marcela Mrnka, please share but do attribute. Thank you. ~M.
From: John R Sent: Friday, May 24, 2019 11:33 PMTo: Marcela Yvonne Subject: Re: Just wondering….
How are things at your end? I hope summer has arrived there. It has only been the last couple of days that it has warmed up here. Prague, Vienna, Zagreb, Ljubljana, Belgrad, Prishtina, Sarajevo all required sweater and jacket. Here in Mostar was hot yesterday. Just waiting for a bus to Budva in Montenegro right now. It seems all the train tracks were blown up in the war here in the 1990s… and have not been replaced. From Budva, it will be in to Albania then Greece…
So what has been turning your world upside down? Give me the Reader’s Digest version.. not just the headlines! I hope you are _________ blankety-blank-blank (because some things are just too precious to share).
From: Marcela Yvonne Sent: Friday, May 25, 2019 12:47 PM To: John R Subject: Not a quick story / Re: Just wondering….
Sailorman! I’m just relaxing in my new-ish, light-filled, bedroom (feels like a bit of a tree house :), sipping the Saturday morning/noon cuppa Joe, wondering what his Salty-ness is up to, where on earth his Sexy-assed-self is parked right about now, and then there you be, right in my lappy! The shit storm(s) is/are a big story… the Reader’s Digest is that I have Lyme disease. It got ugly. It’s what started all those bizarre symptoms in the winter, probably been hiding in my body for years (not uncommon at all), triggered by who-knows-what, the possibilities in my world specifically are endless… and because it’s me, and my never-straightforward life, I couldn’t just pick an easy disease, you know, one where you have symptoms, they test, they find it, they diagnose it, they treat it, you live or you die. No no no! I have to pick one that is as politically as it is medically contentious, argued/denied, yes full on denied, controversial, impossible in every way including (mis/un) diagnosis and no treatment works the same for everyone and where it and possible co-infections are at in their body. My (ex) GP literally said this: “I, and many of my colleagues, don’t believe in chronic Lyme disease.” Where the fuck do you go with that? We vaccinate pets and farm animals against it… but they don’t ‘believe’ in it? No seriously? Where the fuck does one go with that?
In any case, thank my own resourcefulness and my Ungods, I’ve had a really great Naturopath in my back pocket for years now (because the mainstream wasn’t doing anything useful for me years ago, either), and she has prescription rights if I decide to go the pharma route. She also has Lyme and even before I knew that, I have always trusted her, fully, unlike previously noted (the real quack) GP. No treatment for this beast is straightforward or simple and pharma-antibiotics are problematic for a thousand and one reasons specific to this/these bug(s) so, there is no quick and dirty fix. I’m taking all manner of things and it is actually working, at times making it worse/before better, but that’s how it works, and costing me buxx I don’t have to spare, but that’s how it works :) It turns out that many of the herbals and my own witches brew that I’ve been making/using for years to keep that annoying virus in my body at bay, also have antibiotic properties, antimicrobial (Lyme/Borrelia in its many incarnations is a bacteria), so quite inadvertently, I have been suppressing its havocs for some time. If I ate garbage food, didn’t exercise regularly and other bla bla, I likely would have been sick years ago. Sweat, elimination, in all its various forms, is one of the keys to getting this thing out, it likes to hide and morph, and in the words of said Naturopath, it is a marathon, not a sprint. Realistically, so is any other serious illness, including cancer and some of the other ones less controversial, in this moment, because they all were/are, at some point. This past week is the first time in many months that I have felt almost OK, it’s on the upswing, and I have so much more big-story on all of it, but that is almost enough of that.
I work really hard at not going down the various rabbit holes around it, it has been nothing short of traumatizing because of all the bullshit around it, never mind the seriously big, seriously scary manifestations and myriad crazy symptoms I was having, it impacts every.single.system in the human body, and is a transformer… between all that and the full on dismissal by previously noted (ex)GP, she just doesn’t know that bit yet, I have my reasons, it has been one of my life’s biggest hells, and we know I’ve seen a few… maybe more than reader’s digest, sorry/not sorry, it isn’t a quick thing in any regard, always prompts big questions from others, so I’ve just tried to pre-empt some of those, for your benefit, and mine.
Also, my world feels upside down cause my mama’s been diagnosed (finally) with Parkinson’s, and really, in her (translated) words, if we’re going to get that particular horribleness, one’s eighties is a much better time than for example one of my clients, our age, or younger. Medication has made a huge difference and she is also doing better than she has in a long long time. My SunnyBoyManchild was an inadvertent auditory-witness to the horrific murder of someone in the suite directly above him in his building, just a short time ago, so my most-loved humans and I have not had an easy time of it in recent weeks and months. Thanks for asking Sailorman, a lot, it means something.
On a better note, moving in here was a challenge (huge understatement) because of the above getting worse and worse, and really crappy space planning on the landfolks’s part, but it’s coming together, has also cost more money/energy than I have, and there is lots left to do, but I’m loving it now, have even had enough energy in the last week to explore, look for trails, spend a bit of time down at Transfer beach… found the marina, and fondly thought about the other one I know, the Lady Jezebel and her Sexy-assed man at the helm… I’m loving Ladysmith so much more than I thought I would, and 30 minutes max door-to-door for work is an absolute luxury. I love this new-ish job, cause if I have to work 5 days a week at this stage to barely make ends meet, that really needs to be the case, so it certainly helps in the grand scheme of things.
Summer/balmy spring comes once in a while, it is raining today, not a bad thing, the Duncan area is already mumbling ‘drought,’ and Alberta is already on fire… decent weather predicted for tomorrow, really hoping to get to the beach for an hour or two, and then a simple trail jaunt… it’s so lovely to have enough time left in work days/weekends because I’m not constantly trying to ‘get somewhere,’ or maintaining a ridiculous house and property. If Ima pay someone else’s mortgage, it needs to be like this. Summary: it’s getting good in the hood again SaltySailorman. Big big lessons in all shapes and sizes in all of it for me, and it has all forced a bit of a Marcela-mellowing that is challenging to articulate, but welcome, very welcome, for sure.
Your adventures sound absolutely grand, and I am not a bit jealous, I am full on fucking envious and marvel at how well you have worked this entire life thing out! If I can’t be doing it myself, I am happy to enjoy it in the form of your missives. I LOVED Mostar, that entire part of the world… I was heartbroken when I learned during that war that that most amazing bridge had been destroyed! I spent a month the summer of my 25th birthday in Dubrovnik and its surrounding areas with my mama and step-papa, that was before that particular war, it was stunning, just fucking stunning! Did you get to Plitvice? It’s Sunny’s dream, he is a water(fall) hound, nature nut, like the mama.
___________ blankety-blank-blank (because some things are simply too precious to share…). I’m looking at all these words and thinking oh dear, I’ve written a book, but that dear Sailorman, is what writers do. And I am nothing, if not that. Big brain fog and all. I hope your tribe is well, (almost)new-grand baby and all! Clearly, you are. Yay! Hugs back Sexy-assed SailorZeke, and smooches, and _________blankety-blank-blank, always…
Writing and Zeke/Marcela Photographs are mine, image of the Original Mostar Bridge located via Google Image Search:
This is NOT a sob story and it is just the beginning.
The more I learn about this thing, and trace back to what at first glance appeared to be unrelated ‘health issues’ over the last couple/three years, Hashimotos is just a single example out of many, the more I understand this ‘thing,’ and the angrier I get with my (ex)GP and the mainstream healthcare system.
I have had to become my own doctor in so many ways, and so much of my (and others) suffering could have been pre-empted, treatment could have been so much simpler had a few connections been made, that I have now made myself. There could be a thousand and one reasons I tested negative for Lyme, including the fact that it may well be different bacteria, with very similar, equally serious symptoms, and/or, how we test for Lyme remains inadequate at best, and negligently pathetic at worst, resulting in many (documented) false negatives. Whichever it is, I am well beyond ‘acute’ which is the most treatable phase of this beast, well beyond ‘chronic,’ into the third phase, which impacts every single part of my body, every single system.
Some days the only thing I can do is stand, because sitting is too painful… and that’s just the tip of the symptom iceberg… Game changer does not begin to describe it, this thing. In a pm conversation with my BFF, I likened it to addiction, in that it morphs, hides, changes, is resistant to treatment for all of those reasons, just as stigmatized, judged (but you don’t look sick… fuck you!), and mis-understood.
The mainstream healthcare system did fuck all to support me in that battle, why the fuck would I be so delusional as to think they will help me with this one! No seriously? Why? This is not a sob story, this is my reality, it is complex, brutal, and there is no quick fix. So if you find it overwhelming (imagine how I feel?), fuck the fuck off already, permanently. Don’t bother just unfollowing or snoozing, please, that is so fucking passive-aggressive that it seriously brings out the ‘violent’ in my hard-core anti-violence stance. Stupid as they generally are, some interwebs memes are at least accurate: “…if you can’t take me at my worst, you do not deserve me at my best…”
Crown in place, at the bottom of the sea floor, closely guarded by PinkFish and her compagnons silver fishes… Don: like my other favourite artist, Vincent, you lay the paint on thick, in layers, because real stories cannot be told in veneers and with thinly brushed, watery strokes, for the truth, rarely lies at the surface.. I love you, and you MySue. I would drown without both of you right now.
PinkFish – original art by Don Bruce, Terrace BC
Writing and Photographs: please share if so inclined but do refrain from plagiarizing and using photographs without permission. Thank you.