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rep_resentSince 2022 when it escalated abruptly due to ADHD medication disruption, I've been losing a battle progressively against a full body syndrome of some kind. We have operated on the assumption my disease is Narcolepsy which is multiplied in severity by my existing ADHD and Hormone Conditions. I think we've been wrong for a long time, and in many ways I can only blame myself for not seeing a neurologist and going through the rule-out workups for Parkinson's Disease when I had the chance. See in February of 2022, the only obvious link between my syndrome and sleep / body posture related problems was that I had catastrophically traumatic sleep which looked like Sleep Apnea for the longest time. I'd sleep, and wake up so fatigued and drained that I couldn't move. After research into Narcolepsy, I learned about sex hormone abnormalities associated with my gut, brain and skin conditions, and this lead me to switch from tablet ADHD medication into using a capsule extended release variant to control my dopamine levels over the full day.
This worked. For a time. As my condition continued to worsen, I started having rectal bleeding episodes, I began growing breasts, I had a lot of estrogen symptoms, my prostate was ballooning, and it looked like prostate cancer. We ruled that out, it continues to be benign BPH, and my prostate hormones (PSA) wax and wane from above and below threshold for cancer monthly. After some blood tests captured a near-female level of Serum Estrogen that waxed and waned over the course of a month, with significantly low testosterone, another discovery from my Urologist in Summer of 2022 became part of the model. My scrotum was "not quite on correctly", and my shrunken (recently infertile) gonads suddenly just fit inside of my abdomen by sitting sometimes. We eventually concluded an intersex condition, likely Mosaic Klinefelter's and Ovotestis, was involved. Lab testing coverage by my insurance was insufficient, and I battled until Summer of 2024 for basic treatment. This includes cancelled sleep labs, missed medication refills, the works; stuff that makes you want to challenge healthcare CEO's to Fox Only No Items Final Destination.
Since moving to Canada, I've been living in a legal limbo, waiting for paperwork that is delayed by strikes in Canada Post and an incompetent federal government. I can't get care even started through waiting for a doctor, I have to wait in line at a walk-in clinic and get out of pocket refills for my medications. We're due back first week of January to re-up my ADHD meds and do labwork for my thyroid. It's meant that I'm due to carefully monitor myself and be my own specialist, again, for the third full calendar year in a row. Suffice it to say, arriving at the conclusion that my Narcolepsy is secondary and actually just a rider on Parkinson's is a bold claim, but the thing is, I was told I may have Parkinson's as early as fall 2021 when I was given a provisional Narcolepsy Type 1 diagnosis. Symptoms of the syndrome had been observed by my professional colleagues as early as 2017, when one of the psychologists I worked with at my rehab job had observed postural asymmetry and muscular rigidity in my right hand side prior to having coffee each morning. I assumed, wrongly, that my blown out knees were the problem. I assumed a lot was normal, because nothing ever showed up in panels.
Nervous system diseases are notorious for this arc, starting as a broad spectrum guessing game of narrowing down increasingly acute syndromes until arriving finally at a 'root cause'. Yesterday, my right hand was so weak that trying to break a chunk of room temperature dark chocolate caused me to over-strain my entire right arm. It's still sore. Holding posture in my right hand and right leg, as well as the muscles in my neck, back, and trunk, is notoriously difficult, and I often adopt a 'slump' depending on my hormone cycle's phase. Everything is compounded by my other conditions, but right-hand motor abnormalities are becoming more and more and more frequent, ignoring the status of any injuries I thought I had (RSI, etc) and flaring up abruptly. Essential Tremor is the most classical of these conditions, many people don't know it, but Parkinson's is why Hitler's right hand is so jittery in the movie Downfall (you might know it from meme classics like 'Hitler gets banned from xbox live'). If you go watch the part where the actor goes to remove his glasses, you can see dyskinesthetic flickers of the fingers accompanying the essential tremor that causes his whole hand and wrist to shake. Really good acting I might add.
My right hand increasingly does this, I'm also dealing with something rare but reported in some case studies: right eye perceptive field shrinkage. Apparently, in some cases it's not uncommon to feel like the right-hand side of your visual field is narrow, cluttered, or limited; this appears to be linked to the broader hemisphere-linked abnormalities in the left hemisphere of the brain (where many diseases related to dopamine underproduction like ADHD and Depression are clustered in the left forebrain). The logic here involves dysregulation of the Motor Band which may spread through the rest of the hemisphere and eventually work its way into the visual cortex. Parkinson's and Narcolepsy both tend to show difficulty with focusing the eye, the muscles of the inner-eye that control your lenses start to become unresponsive and stiff, and it turns out you also can have gradual failure of perceptive elements of the visual cortex accompany it. While uncommon to be total, partial blindness and the need of corrective lenses and levodopa to help keep the eyes functional is a frequent element of late-stage Parkinson's. Another alarming feature is Dyspnea, aka "you just stop breathing".
I've lived with Dyspnea for many, many years. Breathing has never been easy, I have asthema and a typical ADHD quirk of holding my breath when thinking intensely or trying to do something. In recent years since 2020, it's gotten so bad that I have to hold my breath to use a fork and knife some days, I hold my breath unintentionally all of the time, often spending parts of my normal day to day gasping for air and struggling to both juggle my permanently manual breathing with other things that require my attention. Reading? I stop breathing. Standing up? Stop breathing. Switching thoughts? I stop breathing. This often accompanies my Cataplexy, and some auto-immune linked problems from my body's Endometriosis make swelling of my airway frequent, so there's just days where I'm drained fucking suffocating constantly with no way to relieve it. You can imagine, struggling to breathe when nothing is visibly wrong can be quite alarming and makes you reality check; and of course this accompanies the most severe of body shakes, including dyskinesthetic jerks of my legs, arms, shoulders, hips, thighs, and other muscles (including my prostate) in spastic attacks.
I'm going to die, like all people on this planet, but I'm going to die a lot sooner. Parkinson's is a progressive, degenerative disease. We have no way to reverse it, and Narcolepsy even if it was all I had to worry about, also is degenerative. These are exaggerated in their impact due to my intersex condition causing broad body system atrophy and dysregulation since it turns out, my liver needs Estrogen to function and I can't produce enough naturally (and I have a woman's hormone cycle, meaning I go from highs to lows in a sin-wave multiple times over the course of a month). I'm bleeding out of my ass when i shed endometrial lining, I'm in pain from deposits causing inter and intra-tissue swelling (including nearly dislocating my jaw on the right-hand side and crushing my right hand ear canal every other week for days at a time), I fall over constantly, I stop breathing and have to fight for air, I lose control of my limbs and dance a merry jig I call the "herky jerky" and because of the Cataplexy element of Narcolepsy, yes, my mood can trigger all of these things.
I can't even look nice. My skin is totally fucked, with dry, rough, red and scaly patches all over and constant micro-bleeds from every single hair folicle on my body due to dermal endometriosis. I have huge cancer-like deposits in my thighs that are just rotting blood tissue, the material has penetrated and formed a tight weave over my bladder, prostate, intestines, and gonads. My nervous system is literally disintegrating and the best I can do is watch it happen. My entire life is, effectively, over. I hold out hope that HRT and treatment of the conditions will come, that I can claw out a little more function so I can do the things I want to do while I have the chance, but every month, the goal post flips just that little bit further away.
I am going to die. Slowly. Agonizingly.
I am going to watch everything about my personhood decay.
I am going to be conscious and present for most of it.
I am going to be trapped.
There is nothing anyone can do about it. It is only a matter of time.
As I type this, I'm battling my eyes to stay open, I'm straining to breathe, I'm desperate for water and no amount of it is enough. I can barely swallow. I can hardly speak. I can't stand without pushing literally every other thought out of my mind.
I'm not gone yet, but I will be. Blink and you'll miss me.
I write this in hopes you will understand. The Zano I knew from just 2 years ago is long dead, and I don't think they'll ever come back.
Thank you for the years of love and support.
This worked. For a time. As my condition continued to worsen, I started having rectal bleeding episodes, I began growing breasts, I had a lot of estrogen symptoms, my prostate was ballooning, and it looked like prostate cancer. We ruled that out, it continues to be benign BPH, and my prostate hormones (PSA) wax and wane from above and below threshold for cancer monthly. After some blood tests captured a near-female level of Serum Estrogen that waxed and waned over the course of a month, with significantly low testosterone, another discovery from my Urologist in Summer of 2022 became part of the model. My scrotum was "not quite on correctly", and my shrunken (recently infertile) gonads suddenly just fit inside of my abdomen by sitting sometimes. We eventually concluded an intersex condition, likely Mosaic Klinefelter's and Ovotestis, was involved. Lab testing coverage by my insurance was insufficient, and I battled until Summer of 2024 for basic treatment. This includes cancelled sleep labs, missed medication refills, the works; stuff that makes you want to challenge healthcare CEO's to Fox Only No Items Final Destination.
Since moving to Canada, I've been living in a legal limbo, waiting for paperwork that is delayed by strikes in Canada Post and an incompetent federal government. I can't get care even started through waiting for a doctor, I have to wait in line at a walk-in clinic and get out of pocket refills for my medications. We're due back first week of January to re-up my ADHD meds and do labwork for my thyroid. It's meant that I'm due to carefully monitor myself and be my own specialist, again, for the third full calendar year in a row. Suffice it to say, arriving at the conclusion that my Narcolepsy is secondary and actually just a rider on Parkinson's is a bold claim, but the thing is, I was told I may have Parkinson's as early as fall 2021 when I was given a provisional Narcolepsy Type 1 diagnosis. Symptoms of the syndrome had been observed by my professional colleagues as early as 2017, when one of the psychologists I worked with at my rehab job had observed postural asymmetry and muscular rigidity in my right hand side prior to having coffee each morning. I assumed, wrongly, that my blown out knees were the problem. I assumed a lot was normal, because nothing ever showed up in panels.
Nervous system diseases are notorious for this arc, starting as a broad spectrum guessing game of narrowing down increasingly acute syndromes until arriving finally at a 'root cause'. Yesterday, my right hand was so weak that trying to break a chunk of room temperature dark chocolate caused me to over-strain my entire right arm. It's still sore. Holding posture in my right hand and right leg, as well as the muscles in my neck, back, and trunk, is notoriously difficult, and I often adopt a 'slump' depending on my hormone cycle's phase. Everything is compounded by my other conditions, but right-hand motor abnormalities are becoming more and more and more frequent, ignoring the status of any injuries I thought I had (RSI, etc) and flaring up abruptly. Essential Tremor is the most classical of these conditions, many people don't know it, but Parkinson's is why Hitler's right hand is so jittery in the movie Downfall (you might know it from meme classics like 'Hitler gets banned from xbox live'). If you go watch the part where the actor goes to remove his glasses, you can see dyskinesthetic flickers of the fingers accompanying the essential tremor that causes his whole hand and wrist to shake. Really good acting I might add.
My right hand increasingly does this, I'm also dealing with something rare but reported in some case studies: right eye perceptive field shrinkage. Apparently, in some cases it's not uncommon to feel like the right-hand side of your visual field is narrow, cluttered, or limited; this appears to be linked to the broader hemisphere-linked abnormalities in the left hemisphere of the brain (where many diseases related to dopamine underproduction like ADHD and Depression are clustered in the left forebrain). The logic here involves dysregulation of the Motor Band which may spread through the rest of the hemisphere and eventually work its way into the visual cortex. Parkinson's and Narcolepsy both tend to show difficulty with focusing the eye, the muscles of the inner-eye that control your lenses start to become unresponsive and stiff, and it turns out you also can have gradual failure of perceptive elements of the visual cortex accompany it. While uncommon to be total, partial blindness and the need of corrective lenses and levodopa to help keep the eyes functional is a frequent element of late-stage Parkinson's. Another alarming feature is Dyspnea, aka "you just stop breathing".
I've lived with Dyspnea for many, many years. Breathing has never been easy, I have asthema and a typical ADHD quirk of holding my breath when thinking intensely or trying to do something. In recent years since 2020, it's gotten so bad that I have to hold my breath to use a fork and knife some days, I hold my breath unintentionally all of the time, often spending parts of my normal day to day gasping for air and struggling to both juggle my permanently manual breathing with other things that require my attention. Reading? I stop breathing. Standing up? Stop breathing. Switching thoughts? I stop breathing. This often accompanies my Cataplexy, and some auto-immune linked problems from my body's Endometriosis make swelling of my airway frequent, so there's just days where I'm drained fucking suffocating constantly with no way to relieve it. You can imagine, struggling to breathe when nothing is visibly wrong can be quite alarming and makes you reality check; and of course this accompanies the most severe of body shakes, including dyskinesthetic jerks of my legs, arms, shoulders, hips, thighs, and other muscles (including my prostate) in spastic attacks.
I'm going to die, like all people on this planet, but I'm going to die a lot sooner. Parkinson's is a progressive, degenerative disease. We have no way to reverse it, and Narcolepsy even if it was all I had to worry about, also is degenerative. These are exaggerated in their impact due to my intersex condition causing broad body system atrophy and dysregulation since it turns out, my liver needs Estrogen to function and I can't produce enough naturally (and I have a woman's hormone cycle, meaning I go from highs to lows in a sin-wave multiple times over the course of a month). I'm bleeding out of my ass when i shed endometrial lining, I'm in pain from deposits causing inter and intra-tissue swelling (including nearly dislocating my jaw on the right-hand side and crushing my right hand ear canal every other week for days at a time), I fall over constantly, I stop breathing and have to fight for air, I lose control of my limbs and dance a merry jig I call the "herky jerky" and because of the Cataplexy element of Narcolepsy, yes, my mood can trigger all of these things.
I can't even look nice. My skin is totally fucked, with dry, rough, red and scaly patches all over and constant micro-bleeds from every single hair folicle on my body due to dermal endometriosis. I have huge cancer-like deposits in my thighs that are just rotting blood tissue, the material has penetrated and formed a tight weave over my bladder, prostate, intestines, and gonads. My nervous system is literally disintegrating and the best I can do is watch it happen. My entire life is, effectively, over. I hold out hope that HRT and treatment of the conditions will come, that I can claw out a little more function so I can do the things I want to do while I have the chance, but every month, the goal post flips just that little bit further away.
I am going to die. Slowly. Agonizingly.
I am going to watch everything about my personhood decay.
I am going to be conscious and present for most of it.
I am going to be trapped.
There is nothing anyone can do about it. It is only a matter of time.
As I type this, I'm battling my eyes to stay open, I'm straining to breathe, I'm desperate for water and no amount of it is enough. I can barely swallow. I can hardly speak. I can't stand without pushing literally every other thought out of my mind.
I'm not gone yet, but I will be. Blink and you'll miss me.
I write this in hopes you will understand. The Zano I knew from just 2 years ago is long dead, and I don't think they'll ever come back.
Thank you for the years of love and support.
