First off, I would like to give my sincerest apologies for falling off the face of the planet for the last few months.
What have I been up to, one might ask?
Well, to be honest, I am ashamed to say I have been mostly doing this:
Which I think anyone would do in similar circumstances, but you don't get a lot done, and you're likely to miss any opportunities that come your way (like a call from the Blue Man Group or about the part as Scared Inmate #2).
For the last few years I have been battling debilitating chronic illness, and until about a month ago was eluded in reaching a diagnoses. During that time, I have been told that I'm mentally ill, had doctors give up on me, had friends, family and acquaintances think its all in my head or I'm lazy, racked up medical debt, and had unnecessary invasive medical procedures. To put it lightly, I have been through the ringer, and despite the denial of everyone else, my physical condition has continued to decline. When I developed my UV sensitivity and my eyeballs started hurting, I knew things were going haywire and needed to be addressed asap. So I said screw these doctors I'm working with and saw a dermatologist and ophthalmologist. It was the ophthalmologist who finally diagnosed me. She was the only one who was willing to admit she doesn't know everything, and the only one who pulled out a laptop to conduct research with me. The ego of the majority of most medical professionals is impossible to comprehend until you have experienced it.
Ya'all need to take some freakin' communication courses!!!
(I'm not from the South, but ya'all is such a fun phrase, don't you think?)
It has been very hard to process, as there are no "cures" for this rare and misunderstood genetically inherited autoimmune disease, Vogt-Koyanagi-Harada, or VKH for short. All you can do for immune diseases is manage them, and if you're lucky and play your cards right you will get to live a "relatively normal" life, with a "close to average" lifespan. This is a very heavy thing to lay on anyone, but especially someone who is under 30 (not by much, but still!) and naturally active and independent. Which is why I started working at 15 and prefer to turn my own wrenches. Seriously homie, get your dirty paws off the MR2. Thanks.
(Please be aware that VKH affects your cognitive functions, so if I repeat words or make some other typo please be kind. This is partly why I haven't been writing. I will be checking this thing over several times before posting for errors, but will probably still miss a few. Thanks!)
But I'm freakin sick and tired of being sick and tired, and if you can't change a situation, you might as well change your attitude or perception of it, so now that I have spent nearly the last year feeling lost and depressed, I've decided to stop crying, start laughing, and do something about it. Perhaps its the Yaqi in me, but even through my darkest days there has been this voice coming from deep inside that won't let me give up on myself, that says I must fight, that I have work to do.
For people who have autoimmune diseases, the time period between onset and diagnoses is very pertinent to minimizing damage done to the body by the very mechanisms in place designed to protect it from harm. And unfortunately my experience has taught me that these diseases are highly misunderstood, as statistics show it takes an average of 7-10 years for people with autoimmune diseases to get proper diagnoses. 7-10 long, horrendous, tortuous years of bouncing from doctor to doctor, specialist to specialist, pill to pill, racking up debt even if you have insurance because there's still co-pays and traveling to and from the various offices and taking time off to go to these appointments (if you're lucky enough to still be able to work), and the out of pocket cost of often unnecessary invasive procedures, or ones that could have been conducted better had the etiology of the symptoms been properly understood. 7-10 years of friends, family, co-workers, acquaintances, all looking at you funny, wondering what is wrong with you, being worried about you, or thinking you're totally nuts, a hypochondriac, or an attention whore. 7-10 years of your life absorbed by worry, anger, anxiety, fear, depression, doubt, and struggle to adjust to continual changes and loss.
I have experienced all of this, but have been lucky as it has only been about 3 years for me, though technically my research and medical history have shown that the VKH started manifesting when I was a child and has flared on and off in until recently unrecognized forms. And that is what makes the onset of autoimmune disease so insidious. Its invisible. Its your immune system turning on your body, so it starts at the cellular level, sorta like cancer (its actually odd how similar cancer and immune diseases are, in fact the same medical treatments are used for both!), and often times it takes many years for displayed symptoms to show up as abnormal markers in lab results, which means you could be literally dying, but your blood and urine samples come up "normal". This is another aspect of the human body that seems to be misunderstood by doctors and is maddening. I have lost count of how many times I have had blood work pulled while I was in debilitating inflammatory pain but no abnormal levels of inflammatory markers show up, or had urine analysis come back within normal ranges despite the fact my kidneys were melting down.
If you have a chronic illness, especially an immune mediated one, or are close/have been close to someone who does, then what I am saying here is old news. But most people will be lucky enough to have no idea what it is like to be physically and/or mentally inhibited. They don't know what its like to be robbed of capabilities we take for granted, to have everything flipped on them, never to be put back the way it was, and its all up to you to make sense of it and somehow piece together a "life" out of it. All this, while the Real World continues to move on; the rent is still due, the car still needs to be fixed, the fridge won't fill itself. The Real World can be a cold and heartless one when you're struggling with your own mortality. The Real World forgets about the important things, like cherishing the present moment and all that you have, even if you can't do many of the things you once took for granted. And the Real World also forgets about questioning the status quo, about pushing boundaries, looking for alternative solutions, and not taking "no" for an answer. Its too tired from working all day to change the World. It just wants the nice house and paid vacation.
I was frustrated at first by the time that went by between my onset of latest symptoms in 2011 and my diagnoses in July, but I have come to understand that it has been a massive blessing in disguise. The time spent chasing medical ghosts when I first got sick, combined with my lack of transportation, a lag in medical coverage when I was no longer well enough to pursue my career, my UV sensitivity and other physical disabilities, and living in a place over a mile high that gets more than 300 days of annual sunshine, all played a role in the delay in my diagnoses. I cursed each and every one of them more times than I care to admit, but again, the delay was one of the best things that could have ever happened to me. It has forced me to think outside-the-box, to research biochemistry and the inner workings of the body more thoroughly than I would have if I had doctors thinking for me and feeding me pills, and to question the efficacy of those pills and the very nature of our medical industry as a whole.
In short, I feel that I have unwittingly avoided a path that probably would have exacerbated the situation rather than helped, and I have re-discovered knowledge that humans have cherished since time immemorial but has been blown asunder by the "Pharmocratic Inquisition" that's developed a stranglehold on the Western Medical System for the last 150 years or so. I have also discovered some fascinating correlations between disease and environment, which I look forward to discussing at length on this blog. It seems those of us with autoimmune disease are the "canaries of the world", and the toxicity of our industrial lifestyles that has been poisoning the planet since the onset of the Industrial Revolution are traveling all the way up the food chain, back to us, the creators of said destruction. Karma at its finest, no?
My thesis is this: Cancer, autoimmune diseases...they may have some genetic pre-dispositons, but their underlying roots are Environmental, meaning, toxicity or imbalance. Currently, "we don't know" what causes these problems in the body, and we are "searching for The Marker Gene and The Cure! Cut off your breasts now, before its too late!" (Donate Now!). Yet, after years of technical research into these matters, everything seems to be tied to be same basic concept: Everything in Nature has a natural state of stasis, and is always trying to maintain that balance. Throw it out of balance in some way (i.e. stress), and it will do whatever it can to regain that original state. Just because you have a marker for a disease, does not mean it will manifest, and not having a marker does not mean you are in the free and clear. Fun Fact: Only about 5% of women who get breast cancer have a genetic marker for it. That means around 95% of women with breast cancer have no family history of it! Doesn't it seem odd, then, that we are so focused on genetic markers, and aren't focusing more heavily on other factors? Could it have anything to do with gene patents and the gargantuan amount of money to be made thru this new industry?? Or maybe that looking deeper would reveal an even deeper set of problems humanity has yet to tackle? Hmmm....
The Human Body is an amazing organism that has evolved from various bits and pieces throughout the millenia...some mitochoncria here, some intestinal flora there...and, sorta like a high security office building, it needed a way to identify the folks who were supposed to be there doing their job, from the trespassers who were there to infiltrate the system from the outside. Our bodies developed all kinds of mind-bogglingly complex systems to do exactly that, ranging from the equivalent of armed security guards to ID cards to filters. But, a guard can be tricked or blinded, ID cards can be faked, and filters can become compromised from too many particulates and stop working. In the same way, our bodies can be infiltrated by organisms that don't belong there, that throw us out of balance, and can only handle so much stress in one life-time. In a very strained body, something will eventually have to give, and in a "perfect storm", you get Cancer, or Vogt-Koyanagi-Harada.
My story (and the story of my father, who is also a VKH Fighter and from whom I inherited the genetic pre-disposition) is a text-book perfect example of a body that has been pushed too far. And the more research I do, the more this seems to be the case with anyone suffering from chronic illness.
I plan to tell my story on this blog, so that others may learn from it, and to share my personal discoveries and knowledge with others, to help further unite the community of those living with chronic illness, and to help shed some light on these mysteries and hopefully help fuel the drive for new research into fields neglected by The Status Quo. Cannabis is a prime and obivous example. Its 20-fucking-13 people, why in the fuck aren't we using this plant like crazy in medical studies??? Why is there still a stigma about it in our society? I lost 4 friends to overdoses before they turned 25, ALL of them were caused by legal, pharmaceutical drugs. You ever hear of anyone dying from a cannabis overdose!?.
I am using myself as a guinea pig, re-discovering the Lost Knowledge of Plants and Fungi, and have found some rather promising potential so far. The most exciting part is I have just barely scratched the surface.
I look forward to this exciting and rewarding adventure! I hope you will join me and share your constructive thoughts and ideas as well. Because "none of us is as smart as all of us".
Thank you for reading!
*Love & Light*
Renata Carmen
Please, if you find any value from this blog, please consider making a donation to the PayPal link at the top right of the page. I don't create these posts expecting anything but to help/entertain others, but I am a disabled mechanic/artist who is not currently receiving SSI/SSDI and when I'm flared up it's hard if not impossible for me to get my hustle on. I'm also working on adding Bitcoin here! :)
