Help With My Fight for Physical and Mental Health

Hi ~

Thank you for taking the time, reading, sharing, thinking about, and any amount of support, financial or otherwise—from the bottom of my heart of racing hearts, and from my family, the people who love me, and little kid me most of all.  

I have had trouble asking for help, for what I need, from the furthest reaches of my memory, but I am proud of myself for trying now. And I hope you ask for help too when you need it, because you deserve it. We all do.

My learning disabilities and illnesses, which are now referred to as ~neurodivergence~ make the letter-for-letter writing of this pretty difficult for me. I have had angelic friends and family offer to make this page for me and help me in the writing of it, but for whatever reasons of will, I have felt called to ask for this help on my own in this way. Maybe something about facing fears, or loving my self, or some divinity practice of being very seen. The following is long, soooo long ( I am so uncomfortable with how long it is, but this is what you are supposed to do I think- also do many pictures, but that’s literally my language so) but if you like (like I do) reading people’s diaries, or have interest in a transcripted stream-of-consciousness prayer…keep reading <3

otherwise : 

thank you thank you thank you thank you 

I am way past the point that I ~”should”~ have reached out, at least in this way, this far. There are soooooo many reasons for this (the above mentioned hard time doing the asking, the specific asking, the paradox that I do truly always know it could always be worse, and many people in the current world are living that much much worse) and another being that most if not all of my illnesses are invisible, and I try to hide them more still. Unless you knew me well, just looking at me, I wouldn’t look sick. Unless you also have been chronically ill or struggle with mental health, and can spot the tells I /seem/ fine.  

That while we have come such a long way, the stigma around mental health and mental illness is still very real. It is still often viewed as a personal failing, a weakness, something made up, a problem of the privileged, for attention, generational, meant to be handled privately, or not that bad. 

It can be hard to explain, hard to describe, and even hard for one’s own self to understand- everyone gets sad everyone gets anxious everyone gets distracted everyone worries. For these reasons it can also be difficult to know, when you need help and how to get it. Our emotions and thoughts and feelings aren’t some bump that’s not supposed to be there, there’s no external color change or spiritual temperature we can check to know how sad is too sad how anxious is too anxious how scared is too scared. 

But I have a silvery shimmer of hope that by talking about this, naming it, witnessing things unfold and what comes with it, it can maybe one day help someone else feel less isolated, less broken, less wrong, less shameful and less inherently bad. Just as everyone who has bravely asked for help before me has helped me feel braver and less alone and let me even IMAGINE a world where I might not have to suffer in silence, and maybe not suffer at all. 

This is something I have thought about doing for a long long time actually, never on this scale - I wouldn’t have been able to even know I could think of asking for a year of care - but at several of my health markers over the past few years, but couldn’t.

I also have some day dream where I come to tell the tale after I’ve conquered it, I’m better, I’m happy, out of the dark and in the sun and this is where I can help people I think, that’s when I can talk about it. And while I think it is important and beautiful to envision my life in remission and having made my way through - it is necessary that i abandon this as of now not real scenario where I can be most help from the top of mountain, that that’s where i’m most worthy of help and support and care. Instead I am (so) humbly offering myself up myself now, from the muddy mucky merky climb ( at best) and (at worst) asking for help and looking for light from the absolute rocky seemingly bottom less bottom to say you and me are still worth it if you can’t make it to the top on your own - there is no shame in being in pain and there is no shame in being in process. 

I am super grateful for how incredibly lucky I have been this past year for the God-sized amount of help and support (financial, spiritual, physical, and emotional), I have received from my guardian family, friends, and strangers—I have been supported in so many ways, large and small, by loving and kind friends and family, my mother who has been saintly and given up more than could be called for, friends that are family, strangers, flight attendants, nurses, children, doctors, God and the stars—but I still need more help, a LOT more help. I know this amount of love, help, and care I need are those that so many people who struggle with the things that I am struggling with and have struggled with will heartbreakingly never receive. I am so grateful and cosmically blessed, but also deeply troubled and weighed down with knowing that so many suffer every day and our current world has not much help to offer other than wishes and prayers (which of course are very powerful, but sometimes we need more—a lot of times we need more). I sometimes think maybe I am going through all of this because I am meant to be part of the solution. I also know that I am help to none if I am not here and if I am not well. My rational self also knows that in my ideal—and one day potentially-possible world—me having health, safety, security, and wellness does not mean I am taking away from someone else’s. Because I am currently in a situation where I am unable to care for, support, or sustain myself on my own, and I want more than anything to feel mentally and physically well again, I have landed here. I am reaching out much farther than I feel comfortable to ask for help….to help me get help, help me help myself, and to be able to get back to feeling like myself enough so I am am able to be love those I love, the people I haven’t met yet, this beautiful earth, and to unnamed, unknown others because, honestly….that feels good!

the is the telling of essentially what has gone wrong. and while again i am suffering and have so in the past - it doesn’t cover all the blessings and miracles and wonderful things that have happened to me and for me in my life. I would have to write a much much longer piece ( omg could you imagine ) about everything that has gone right for me. it would take years to write and decades to read, and instead here are some reasons things have been hard and why i need help 

{{{{{{{}}}}}}}}

Since childhood, I have been chronically ill and struggled with mental health and was often in and out of doctors’ offices and hospitals. At birth, I was diagnosed with and treated for asthma, experienced chronic inner ear infections, and around age five was diagnosed with Vesicoureteral reflux—chronic urinary tract reflex that can cause renal damage and if left untreated renal/kidney failure. The modern course of action is corrective surgery, but the mid-90s and early 2000s protocol was long-term antimicrobial prophylaxis and bi-annual medical procedures and screenings. In other words, I was on a course of antibiotics (amoxicillin) everyday for over five years (for both the recurring middle-ear infections and the Vesicoureteral reflux). I frequently went to the hospital to undergo painful and traumatizing medical tests and procedures, which was the start of medical trauma and fear and need in an avoidance cycle that my chronically ill community very well knows just piles and piles on.

In addition to years-long daily antibiotic treatment, I was also put on corticosteroid treatment, prednisone, for asthma for ten years. So for several years during my childhood, I was taking—every single day—an antibiotic, a steroid, an antihistamine, and an anti-inflammatory. 

I so sympathize with those who know what this does to your immune system, gut, and long term health and organ function, and for those who don’t - it’s not good. 

In middle school is when either I or my mother first started to notice signs of my mental health. I had always been a ~sensitive~ kid - one of the few diagnosis i have not received officially is being on the autism spectrum disorder- but looking bad there are a lot of signs and I think it is part of why I struggle finding the right treatment today. I began having anxiety attacks and night terrors stemming from some non health related traumas and began treatment for those, and in high school getting diagnosed and treated for adhd. 

During adolescence I was sick with something about equal times to when I was not, sinus infections, strep throat, bronchitis, flus and debilitating period symptoms. During my Junior year of high school, I contracted Mono, a pretty severe case. And unfortunately, most likely because of my weakened immune system, the Epstein Barr Virus has continued with repeated flare ups at least a dozen times since then. 

I “outgrew” many of my health concerns in their original forms and was able to lead a pretty ~”normal”~ childhood for good stretches of time ( i’m so grateful !!!!!!!!!) . However the damage this caused to my system is at the root of most of my physical and mental health struggles that I am dealing with today, and have cropped up in various ways over the last decade.

My physical and mental health took their first major dips in my “adult” life when I was at University and had to drop out due to being unable to attend class consistently because of my ailing physical health: respiratory infections so severe they gave a college kid a refillable prescription for Codeine, mono mono mono and virus after virus that I could not recover from, as well as the beginning signs of worsening mental health.

And so at 20 years old I began the process of trying to get well physically and mentally. 

After my first half dozen attempts at various mood stabilizers, antidepressants, anti-anxiety, and antipsychotic and supplement med combinations being unsuccessful and often seriously and dangerously worsening my condition, I was recommended TMS (Transcranial Magnetic Therapy) and/or ECT (Electro Consultant Therapy) by my psychiatrist at the time. Over a decade ago I was prescribed treatment that could have put me in remission and greatly eased my suffering, but did not have resources or access to receive “alternative” treatments at the time. It was over a decade ago that I discovered I was not going to respond well to traditional psychological and psychiatric treatment, and over the next ten years I cycled through different phases of health, happiness, and ability; only once ever going longer than a year’s-length period where I was healthy enough to consistently work the same job (when I was 23, it was also the year I made enough money to qualify for the affordable care act, and was able to go back to seeing a therapist and keep seeing an psychiatrist).  

At the time, there was no such thing as mental health insurance for individuals outside of employer-provided insurance, or if you had a parent who had health insurance, in the state of Michigan: it simply did not exist. I was currently working three minimum wage jobs to pay for weekly therapy and a monthly psychiatrist, and I knew this treatment would cost thousands of dollars out of pocket which I simply did not have and had no way of understanding how to get. I continued to try different medications with not much success and eventually had to stop receiving therapy due to how expensive it was compared to my income. 

in 2014 I received a diagnosis of hashimoto’s thyroiditis, pmdd ( pre menstrual dysphoric disorder) and pcos ( polycystic ovary syndrome)and was put on a regimen of ( costly ) supplements and was told that along with changes in diet and lifestyle would most likely help put some of my symptoms in remission. I was not able to keep purchasing the supplements nor was i to yet much change my life style - i needed to work nights, drink caffeine, and eat what I had access to often whatever was free at the restaurant I was working or cheap and unhealthy take out. 

During 2016-2017, I was in and out of the hospital with what I referred to as “mystery illness.” I had frequent kidney infections, elevated liver enzymes, rashes, and sinus and respiratory infections more frequently than ever. I was briefly on Lithium a couple years prior ( which helped a little ! ) but my system could not handle it and was taken off but some damage to my liver and kidneys has already been done.

Although I did not have any digestive, gastric, or stomach-related illness, I had slowly become allergic to most foods that people eat on a daily basis. More than likely, whatever you had to eat yesterday, I could not eat and have not been able to for several years without my body beginning to shut down. shutting down defined for me as a series of symptoms including extreme fatigue, swollen glands and lymph nodes, fever, headache, sinus infection, rash and and (drumroll) crippling anxiety and suicidal thoughts <3. We all know that when you are not feeling good physically, mental health often suffers as well, and also that it can be hard to take care of your physical body when you are feeling bad mentally. I was put back on corticosteroids and antibiotics treatment with little improvement. 

After 2017, I was able to get symptoms under control by drastically changing the way I ate, hoping at the time it would just be a temporary solution. In addition to some attempts at ~ life style changes~ This worked for a few years until more and more foods started getting added, and the list has become increasingly hard to manage with many unknowns.

Since 2020, my physical and mental health have been harder to maintain after contracting Covid ~five ~times, two cases which were fairly mild, three of which were debilitating for long-term periods of over 4 weeks, and one of which was co occurring with typhus fever that I contracted at the end of 2022 ( that was crazy ). I had already experienced chronic fatigue for many years and many of the symptoms that come from long covid that this only exacerbated. 

At the beginning of 2023, I experienced a trauma that tipped the scales and found me in the ER.  

I was blessed to receive life-saving care and spent the next few months in the recovery process for C/PTSD and other compounded mental health crisis in inpatient rehab facilities, partial hospitalization programs and intensive out patient trauma centers. I had some time to get treatment, and try to find a way to make a living that was sustainable for a disabled and mentally ill freak (in a loving way), and I was very close to breaking out of my past cycles, but did not have enough time and resources to maintain the ground I had regained from how far I had fallen off. 

I have been working in the service industry since before dropping out of college (which I hate doing lol <3 but wish I didn’t! And some parts of it I love, like the people), and on and off for the past decade, in the following cycle: needing money for therapy and doctors’ (and of course for basic needs and also dreams and desires), so get a job hosting or waiting tables—>run my body, immune system, and mental health into the ground, quit the job because I am unable to do it well and *show up* to work, take time off, try to reset, try to get a job doing literally anything else, maybe somewhere I could have health insurance- get work with kiddos for a little bit, or at a museum, try and work on art, but end up not making enough money one needs for therapy, doctors, medicine, supplements, special food, or hopes and dreams—and go into debt or rely on a partner to support me out of desperation and all that not having these things and a well-enough-paying job cause—> get a job waiting tables.  you can’t be a crying waitress, as someone who is a crying waitress, you just can’t be one for long periods of time. And the cycle of all these things might be easier to afford if I had “proper” health insurance, in which I would need to get a different job, which I would need to go back to school to do, which I would need money to do, which I would need to get better to have. Cycle cycle cycle the cycle hopefully broke for the last time recently, but unfortunately ended because of how broken things got. I was no longer able to work at my job as a waitress due to a significant relapse in my mental and physical health. 

this is where we find me now-in need of my greatest wish. i am experiencing chronic physical and fatigue pain that makes everyday tasks very difficult if not impossible - and my mental health symptoms have become un manageable, but I have gotten into some pretty serious debt this year trying to manage. I lost my house, my car, my ability to work my job, make my art, all the art I was working on at the time, most things that I owned my two sweet grandparents and honestly my mind. 

I have tried over 30, yes, 3-0, different psychiatric medication combinations the most recent of which is ketamine therapy for treatment resistant major depression and OCD. I recently started ketamine treatment which is proving to be both helpful and very unhelpful as I have had a pretty severe auto immune reaction to the medicine, most likely because it affects the liver and the kidney, two of my tricky areas. Depending on what treatment I am able to receive for my auto immune conditions I am either going to continue with ketamine treatment, or to pursue TMS therapy, or a combination of the two. I recently began seeing one of my therapists from the trauma center again and he has recommended if I’m able to take a few months off for treatment and recovery and so the following is what this all looks like: 

Asking for: $45,000 to support living expenses and treatment toward recovery over the coming year

This will help pay for:

Treatments and Therapies (ranges and approximate treatment costs listed with research and consultation and referral)

* Doctors and Specialist appointments, autoimmune disorders and chronic illness (not covered by Medicaid) and Lab work (out of pocket): $12,000

* Therapy/Psychologist visits: twice a week for one year (sliding scale @ $150/session): $15,600

* Psychiatric Treatments (traditional and alternative) - ranging between $300-500 per session, 36 treatments standard and traditional monthly visits: $27,000 for year

* Alternative Therapy Modalities for Chronic Pain @ $400/monthly session: $4,800

* Cost of Living expenses during treatment and recovery including groceries for dietary restrictions, dietary supplements, car insurance, rent, utilities, used car payment, gasoline and medical and credit card debt: $26,000

Total anticipated expenses for treatment, and stabilization toward recovery: $85,400 — so asking for help for around 1/2 of anticipated costs

I am looking for help and love in all forms. Encouraging words, ideas, play, 

do you know how to write resumes, do you have a part time job that might get me ( substantial) health insurance- do you know how to apply for grants and residencies, know someone selling a car etc etc etc etc etc !!! 

And collaboration on what can we do how do we do it, so that so many people I know don’t need to to ask loved ones and strangers and acquaintances and mutuals on the internet for the things they need to live.

As much as I am ( desperately we know ) hoping for financial help I am just as equally trying to un isolate unfreeze myself, thaw out and come out. I’ve been sober from alcohol for almost two years and I’m also really proud of my self for that, it is hard so I am proud of other people who are doing that too and I am proud of all my chronically ill and disabled community and mentally ill community and would like to show up and be apart of all these communities more. We need each other.

I have so many beautiful memories and things I have done and yet I know so much of my life I have already lost to these diseases things I have missed out on people I could have been lives I could have had lives I did have that I could have kept. I don’t know what to do about that and I don’t know what to do about much

To be so so honest with you sometimes I really think I can’t do it anymore I don’t know how I will go another day with the physical and spiritual pain i sometimes feel, in the efforts of maybe helping end some stigma- I almost haven’t, but for whatever reason on whatever day im writing this the sun is out and every bit of love and help I’ve gotten and been given has added up to this moment and whatever day I send it god and all her angels are telling me that I don’t have to do it alone and there is help, so thank you, thank you, thank you.

My illnesses freeze me, they keep me from engaging with my community, mutual aid, mutual joy, passion, finding out if I have passions, my art, your art eating dancing and the most painful - being able to connect to my self, and my ability to connect with my people. My illnesses isolate me and then I isolate myself. And their most vicious and dangerous quality is what the try to make me believe, and try to make me forget. Whoever is running the show up there can be incredibly convincing and but everyday try to be louder than they are and remember I am so lucky to have people who love me.

Hundreds of times I have started to try to list everyone I’m thankful for you to write and tell them just exactly how but I just don’t have enough words or this just isn’t my medium to be able to convert the crazy crazy psycho tm gratitude that I have. You know who you are and I’m gonna dedicate my whole life to make sure you do, and how much I love and appreciate you, more than any of us could ever know. 

im talking every // single // person // Who has hugged me or held me or given a hand squeeze or knowing look or made me laugh or smile or cry when I needed to, or set me up to crack a joke of my own-f<3cking thank you!! 

i love you deeply 

1000 serenity prayers 

sent from my iPhone :) 

p.s.

some of you know some of you don’t but I changed my name - if you love me, you can call me whatever you want, but jsyk when I shake someones hand now I say hi I’m Noa <3