Debilitating illnesses

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Selena
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Debilitating illnesses

Post by Selena » Sun Jun 14, 2020 2:11 pm

Hello and thank you in advance for reading my letter. I sent my "rough draft" to my mentor who said it was way too long so here I am about to explain what has sadly happened in my life since 10/28/2017. But before I do so, I'd like the opportunity to first share with you a little bit of who I am. I am a physical, sexual, and emotional/mental abuse survivor and I suffer from debilitating illness.
My punitive father was never around growing up (alcoholism and work addict), and my mother is severely mentally ill. Yet, somehow, I survived all of that without developing any addiction issues (my mother is a pain pill addict, as well). Despite all of this and more, I was able to pursue and complete two master’s degrees back in 2013. It has not been an easy road, however. In 2012, I was crossing a street at a pedestrian crossway, and a man on his cellphone hit me at 36 mph. I even survived that, naturally, without any family members coming to visit me in ICU. Not to mention a 3lb complex ovarian cyst I had removed in 2014 – another traumatic event I had to endure alone. And it was during this time, that I started developing severe, crippling – and even disabling... anxiety. So, I did what I've always done; I fought for my life. I found a therapist, a psychiatrist and worked myself through it. It wasn't easy but being the survivor that I innately am, I've always "fought back" per se and refused to allow myself to succumb to what my parents always told me I was – a "loser who would never make it". But nothing would prepare me for the health diagnosis I received back in the Fall of 2017.
I was diagnosed with Lyme Disease and multiple coinfections, as well as viruses among other illnesses. Additionally, during this time, I was exposed to black mold for several months in an apartment that I was living in leading me to develop asthma. Not good for a severely immune compromised person. Perhaps all of the trauma I had experienced had caught up with me. In fact, I've learned along this journey that childhood trauma inadvertently leads to and correlates with a lower immune system.
Not to mention the fact that I had no true "community" – no real friends, family, or colleagues of any kind for any sort of moral support, not to mention physical or financial support. As usual, I was going through another significant life crisis alone. But I quickly started realizing that this was different. In fact, getting hit by that car was a walk in the park compared to what my reality so quickly became. And still, heartbreakingly, is. My symptoms started off as a painful bladder phenomenon, alongside with arthritis, terrifying brain fog (one day I even forgot that the street I was driving on was where I lived), and this bizarre belly pain that swells my entire abdomen up. Something was wrong. The only thing my lab work was revealing was that my blood pressure had officially dropped to 90/60 and that I was now anemic. A new phenomenon for me, yet I was told that "this was my new normal". After being misdiagnosed for these debilitating illnesses (and severely traumatized by a system that is primarily profit focused) for about 9 months in the Western Medical Community (I was even told multiple times that it was "in my head" simply because they couldn't figure it out), I scraped up enough change to get to an LLMD (Lyme Literate Medical Doctor). And then the real pathological testing began. He tested me for Lyme, coinfections, and even Candida Albicans. The results were in. I officially tested positive for Lyme, Bartonella, and multiple Mycoplasma infections, not to mention a high viral load of various origins. Additionally, my bloodwork tested positive for Candida Albicans (basically a systemic yeast/fungal infection). I learned that Bartonella and my particular strands of Mycoplasma colonize in the bladder (which explains why I am always in such crippling pain "down there"), as well as account for the infectious arthritis, brain fog, anemia and ridiculously low cholesterol count. I was told that it was even amazing that I could still construct a sentence (albeit barely) with such a low cholesterol count. And since all of this, I've learned that these pathogens are nutrient scavenging, which explains why despite what and how much I eat, I am severely nutrient deficient. And perhaps the scariest part of all of this is the fact there is no linear way out of it, like I'm accustomed to. I can't "work" myself out of it, let alone get out of bed most days.
Treatment for these debilitating illnesses is expensive and requires low stress levels, specific nutrients through supplementation and food, antibiotics, herbs, lab tests, and so, so much more. And most recently, my LLMD noticed that my left arm and hand were atrophied, compared to my right side. He also noticed my left hand developed a slight tremor. And after ruling out certain things with the neurologist, it now appears that this is yet another symptom of bartonella, in particular. Undoubtedly, this condition is systemically in my body (in all of my systems).
During this time, I lost my full-time job as an administrative assistant, as my employer got frustrated with me due to the fact that I was going to a litany of doctors' appointments searching for answers – looking for the "magic pill" to fix everything. Infectious disease specialists, PCPs, urologists, urogynecologists, gastroenterologists, neurologists, rheumatologists, endocrinologists... you get the point. "Devastation" doesn't even begin to describe how crushed I became (and still am) when I started realizing that this diagnosis was beyond complex, as aforementioned, there just is no easy, simple solution back to health. Shortly after losing my job, I lost my apartment. Yep, I was homeless for about a year. And then, just recently, I lost my car. Admittedly, I was able to get on disability and SSI, as well as food stamps during this time, though it was a long, grueling process. Not to mention the fact that my total financial benefit equates to $776 a month, which is ever so quickly consumed by rent, my light and cellphone bills, medication (this one gets high), food, my monthly visit to the LLMD, copays for other doctor appointments, etc. In fact, I just sold my TV to pay for medication. And as I write this letter, my bed is being listed on various sites (I have an air mattress in the closet) so I can pay my cellphone and light bill (I just got a disconnect notice). Again.
In desperation, I contacted my family this past year. Not only do they not believe me (go figure), they claim I am a lazy person who "doesn't want to work". Yeah, I have to stay away from them for my sanity. Far, far, far away from them. On days that are "okay", I attend ACA meetings (Adult Children of Alcoholic and Dysfunctional Family Members). I also see a very caring psychiatrist for my anxiety monthly (mainly circumstantial) who is very supportive (yet I still owe them $23.50 for the last visit and have another visit coming up Monday). I can barely breathe anymore and for the first time in my life I can honestly say I am depressed. I just don't see a way out of any of this – at least not an easy one. My supportive psychiatrist wants me to see this therapist he highly recommends and of whom he thinks I'll like, but that would require coming up with another $23.50 every WEEK. How could I possibly do that?
Yes, I have an "invisible debilitating illness". No, I am not walking around with a cane, nor am in a wheelchair, yet this is very, very real and very, very debilitating. And recently, I feel I am having a health setback, and I am sure it is due to HIGH levels of stress alongside running out of my medication. The goal of my letter is to explain my situation in hopes that you/your organization can assist someone like me in any possible way. Whether it is through a light bill, help with medication, or even a vehicle. Whatever it is, I'll appreciate it beyond what most people can comprehend. I need a vehicle to get to appointments, go to the grocery store, pharmacy, etc. I need electricity. I need medication. And perhaps more importantly, it would mean the world to me to know that I am not alone, that there still is hope out there shining through good people, and that maybe, just maybe, I still – somehow – can have a meaningful, healthful, and worthwhile life. Asking for help isn't easy, but if a miracle happens because of this letter and your support, it could mean that I still have a chance to turn things around. That it isn't "too late" for me. Anything, and I mean anything, you/your organization can do, will truly help this person I don't even recognize anymore in ways that words cannot even express. Thank you so much for your time and consideration. Sincerely,
Elizabeth, MEd, MA

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