Autoimmunity, A Life Sentence PART II

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I do know what it's like to get a

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life sentence, and I got mine at 24

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I was told I have.

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Rare inflammatory autoimmune disorder

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called ankylosing spondylitis that

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is genetic, lifelong, and not curable

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I've known what my destiny

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or fate is since I was 24.

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It is to become disabled and to

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have to move back to my hometown

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Until in November.

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The chronic fatigue completely took over

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my body and there was nothing left of me.

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Chronic fatigue does not

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feel like being tired.

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It feels more like somebody is just

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switching you off like your battery got

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completely drained, like a device that

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went from 90% to 10% just suddenly,

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neither you nor it know what happened.

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In my case, I would wake up and think

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maybe today will be a better day.

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It never was.

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I would feel malaised

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from the moment I woke up.

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I would drink some

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coffee trying to wake up.

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It would take me hours to have the

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strength to get into the shower, maybe

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feel a second or two of freshness,

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during, but then by the time I got

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out, this cloud of fatigue would

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just come over me and I wouldn't

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even be able to lift my head up,

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let alone read something that would.

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Cause an intense brain fog, drowning type

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effect, and I would have to lie down on

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the couch at like 10:30 in the morning to

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get a feel for what chronic fatigue and

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brain fog do to your thought patterns,

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in 2019, even though I had started

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feeling unwell, I used to think, well, I

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have this sleep start-up, but I should.

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start a mental health startup that

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actually helps people be positive

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and build a process for themselves

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to improve at something, then I

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can run them in parallel, make

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them intersect here and there.

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And I have a band, but I'm doing

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standup at a open mic that I like.

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I should do the same standup

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at a comedy open mic.

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So, from thinking I should have another

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startup and do standup around town.

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I went to lying on the couch

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30 in the morning only

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being able to watch reruns.

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Because new TV shows were too much

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for me because let alone psychological

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thrillers, which are my type of

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shows, I would choose something fun

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and funny like Maisel or Fleabag.

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But because they're intelligent,

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I wouldn't be able to keep up.

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I would fall behind and then

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suddenly feel unwell and brain fogged

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and have to switch ,to, a, rerun

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that I'd seen hundreds of times.

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But more importantly, I

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started struggling for air.

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I wasn't able to get enough air all day.

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My systems felt like they were shutting

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down, and by the evening I would

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be wheezing and gasping for breath.

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by my birthday in December,

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I looked like somebody taking

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their last gasps, at least the

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last person I saw in that state.

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And the feeling of doom had entered

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my, mind that it's any day now, either

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tonight or tomorrow, I was okay with it.

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I made my peace with it.

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I wanted to go in peace.

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I didn't want to bother anybody,

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and I sure as fuck didn't

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want anybody to bother me.

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I was just kind of waiting for it.

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after two months of this kind of

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miserable suffering existence, when

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I was still around one day, I just

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bought a little device to measure

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my breathing, which was around 50%,

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and then bought another device to

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help me do breathing exercises.

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I actually had never given up doing

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my PT exercises because even if

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I died, I wanted to go with the

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best neurochemicals I could have.

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by the time I got to the pulmonologist,

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my breathing was 67%, but even worse,

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while breathing out for some reason.

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Two months later, when they did

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the full battery of tests, I

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was up to 80%, because of the

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exercises I had been doing.

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And they were like, well,

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you're on the right track.

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Just keep doing what you're doing.

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It's something in the autoimmune

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disorder that is causing this.

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but keep doing what you're doing

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and see if it makes you better.

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So I found this new process

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I stuck to it every day.

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Morning, evening, at the one year point

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I started noticing that my breathing

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is not only better than a year ago.

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It's probably better than 2019.

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the interesting thing was that I kind

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of thought that there was a chance

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that when I fixed my breathing that

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the chronic fatigue would go away.

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It did not.

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That feeling of doom that I could die.

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Soon was not there

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anymore, was at least less.

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But the chronic fatigue was still there.

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But since I felt a bit better,

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I took this as a sign that I.

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Can start my reboot process.

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So I'd , already, been

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fantasizing about having a

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mental health startup.

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I was also daydreaming about having

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a grunge band that plays the acoustic

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originals that I play, maybe some

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MTV Unplugged type of covers in all

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these venues that I like I'm not a

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person who really has a master plan.

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I just start doing things and

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then things happen and that

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feels good and I keep doing more.

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So something like going to an open mic.

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You meet some people, you start a

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band, you meet some friends, you have

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some discussions, share some ideas.

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You start a startup

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just, it just happens.

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And this time nothing did.

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I was barely able to work one or two

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hours, maybe two or three days a week.

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let alone, form a band.

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I was barely able to put up a

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song or two, with a video of me.

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It hurt to play guitar.

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It felt bad because I felt

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like my hands were being pulled

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from both sides and I was in.

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Agony, all the time, and I couldn't

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play for more than five to 10

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minutes, I didn't really enjoy

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meeting people with a few exceptions.

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So Amrit in the matrix part

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three just crashed and burned

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before it even started.

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And I kind of failed at the only way

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I knew how to get better and even

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more I realized, I failed at what I

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started out to do in my thirties.

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I could feel that this disability is

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coming when I'm going to be 40, but I

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did so much PT and I put in so much

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effort that when I was able to do

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more, I thought I'd taken care of it.

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I'm not stupid.

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I know the story is gonna end

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horribly for me someday, and I

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know my end is gonna be horrifying,

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but I thought I'd moved it to 50.

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I thought I maybe 55 and 55 for

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somebody like me is like translated

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from Hindi, one foot in the grave

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and one foot on a banana peel.

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It's fine, but I didn't

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see this coming at 40.

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I didn't realize that I was just about

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breaking even until I wasn't, and even

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more, I started feeling this agony and

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discomfort inside my body, especially

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my hip muscles and my core muscles.

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That was a wrenching and

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writhing and, and kind of that.

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Motion of twisting a towel

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to get water outta it.

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And I could feel that in my muscles

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and could tell that I am going

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to lose the use of my legs and

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become disabled in a year or two.

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with the brain fog at the level that I

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was, I couldn't really achieve anything.

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So I asked my rheumatologist to

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send me back to physical therapy.

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This time it was advanced

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physical therapy, something

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called dry needle therapy and

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electrical muscle stimulation.

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I started at a intense six days a

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week, which drained me even more when

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the acute fatigue from PT clashed

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with the chronic fatigue but I did

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feel inside my body again that this

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is the right thing for me to do, and

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it's my best shot at getting better.

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And most probably my last

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shot at getting better.

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So I decided to power through and that I

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would keep doing this until I either got

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better or I go under I believed in it.

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And that kind of worked for me

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'cause I'm a belief driven person as

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opposed to a hope driven person.

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And they're just words.

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But I use it like,

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waiting for a last minute.

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Pardon Is hope and taking a

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rock hammer and Shawshanking

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your way out of there is belief.

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I was lucky in that I had a

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physical therapist who was

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an excellent match for me.

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He was.

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Extremely skilled and confident in

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his skills of dry needle, therapy.

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besides, a lot of fun Gen

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X conversations, which were

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very entertaining to people in

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earshot, which made me think,

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oh, an audience maybe someday.

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But yeah, he did not get

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flustered at my atypical.

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Progress case personality and read

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my personality type well enough to

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effectively be like, well, if you're

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hell bent on Shaw shanking your way

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outta here, here's a much better rock

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hammer and here's much better technique.

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there were a lot of setbacks.

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I started throwing my back out a lot.

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but at the two month, point I

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started noticing that I'm feeling

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some joy from very small things.

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And it was almost amusing because

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I hadn't felt that for years.

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And for context a year before

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that my first startup sold.

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And that's a really big deal.

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I was supposed to celebrate, I

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was supposed to buy something.

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It was supposed to be the best day

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of my life, and I felt nothing.

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I did nothing.

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I told no one.

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I almost killed myself working for that

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startup and it was my baby and nothing.

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The best day of my

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life felt like nothing.

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that's what I meant by just

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because the triggers that spark

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joy are met doesn't mean that

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you'll be able to experience it.

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So I buried myself in

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physical therapy and.

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Just about at the one year point when

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I was starting to make some progress

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right around again, my birthday in

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December, I ended up in the ER with an

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infection that I was unable to fight off.

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And after five hours of waiting, I

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was hospitalized for four days, which

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is kind of long by American standards.

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It took 30 hours to get a room,

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because they were really busy and I

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was lying on a mobile bed in a corner.

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It was a traumatic experience,

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but they also took care of me.

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By the time I got out, I was really

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weak and it was a shock both to my

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system physically and psychologically.

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But I tried to think of it

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as a one-off a week later.

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I caught COVID.

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that made me weaker.

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But I tried to think of that as a

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one-off too, because it was just a

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four day garden variety, COVID, but.

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Two weeks later, one night I ran a

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1 0 1 fever and intense chills, the

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next day onwards, I started running a

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99.5 low grade fever with the chills.

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Intense dizziness from

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sights and sounds around me.

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Pain in my rib and chest area and

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tachycardia, so like a heart rate of

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115, just sitting here doing nothing.

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after 10 days when it didn't go

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away, I went to my PCP and they sent

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me immediately to the ER And then

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after waiting for five hours again

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and all the tests, they found out

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that I'm not having a heart attack.

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But the same way that there's

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long COVID, there's also long.

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Unknown other viruses, hundreds of

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which are in the air around us, and

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I have something like long Postviral

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syndrome from one of these viruses,

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most likely because I'm autoimmune.

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In hindsight, between 2015 and 2017,

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I had something called vestibular

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neuritis, which is intense, motion

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sickness and dizziness from, an

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inner ear infection that is supposed

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to take two weeks to recalibrate.

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In my case, it took two years and it

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was really hard to deal with while

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running a startup and doing that

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much physical therapy, but it was.

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Probably because I'm

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autoimmune and same here.

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I have this Postviral syndrome

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because I'm autoimmune.

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It ravaged through my already

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weak immune system and my nervous

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system and just when I was trying

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to deal with the tachycardia.

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the rib pain became a stabbing

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kind of pain in between each

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rib, the front on the side, in

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the back, and the shoulder blades.

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To the point I wasn't even able

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to lift grocery bags anymore.

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I wouldn't be able to get out of chairs

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'cause I apparently used my hands to

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push down to compensate for my hip.

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I was back to 2003, awake in

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the middle of the night in pain,

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and unable to turn myself over.

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And then I got diagnosed with some

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sort of myofascial pain or nerve pain,

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or most likely cartilage pain, called

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costochondritis with the chills.

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That is an immune response.

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And after trying to just

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deal with the pain with.

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Anti-inflammatory meds and topicals.

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I had to be put on a nerve

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pain medication, which was

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really heavy for my system.

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I was already not able to scroll, now

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I wasn't able to read because there

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was a whole fishbowl kind of vision.

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the dizziness, from my vestibular

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system, which already was like a ringing

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and popping in my ear, became a full

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fledged washing machine kind of feeling.

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But at the same time, the drug

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made me both drowsy, but also

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gave me some excess adrenaline.

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So I decided to go back to physical

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therapy and do as many lower body

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exercises that I could while my upper

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body was not working while running

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electrical stimulation through myself.

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After six months of that insanity,

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the pain started coming down a bit.

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and I left the drug, which immediately

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caused full blown insomnia.

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Like my brain forgot how to initiate

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sleep, and I had to put myself

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through the same cognitive behavioral

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therapy for insomnia practices

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that I taught so many people.

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As I learned even more about how to pull

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it off, 'cause I had to do it back to

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back twice because my immune system and

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nervous system were completely shot.

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And then like a horror

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story that just won't end.

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I woke up one day unable to see

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with my right eye, completely

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red and pain behind my eye every.

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Time I tried to focus and after

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five days of hoping that it was

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pink eye, when it didn't get

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better, I ended up in the ER again.

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This time the Eye Clinic ER, and

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again, after waiting for five hours,

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I got diagnosed with something

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called Uveitis, which I'd read about.

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It's a inflammatory eye

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disorder that is recurrent.

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I had read about it the first time I

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read about my disorder because it's

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comorbid with my ankylosing spondylitis

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sitting in that waiting room, tired

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and hungry and unable to see I broke.

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I. After 20 years, ah,

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I, I finally broke.

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I, I felt like I am the

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sickest person I know.

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And all these narratives I've made up

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that, yeah, I have a lot of atrophy, but

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if I do more PT than anybody has ever

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done, then I'll be able to fix myself

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and have a life that I want and like.

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And that's not true.

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And the narrative I've made up that

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maybe in doing all these exercises,

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breathing exercises, PT exercises, maybe

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I've fixed a part of my autoimmune side,

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the autoimmune side of my disorder.

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'cause I'm not sickly.

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That's false too.

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I am as sick as it gets.

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I'm as autoimmune as it gets.

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I'm not getting any better.

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I'm not gonna get any better.

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My systems are shutting down

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one by one and I'm dying.

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Yeah, I broke there and not

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into crying kind of way.

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Like my heart broke.

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I mean, I felt pain in there.

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since then, in the months and a

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year now, reading has been a huge

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challenge and sometimes I'm just

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not able to do it because it makes

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me very dizzy and disoriented,

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especially reading from devices,

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especially more than a few minutes.

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Same with the hearing.

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a, constant ringing and altitude type

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of popping sound and pain sometimes

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becomes a full fledged gushing.

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And all of them cause a lot

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of vestibular, dizziness.

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And the combination of the two just

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makes me completely unsettled and unwell.

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So I don't know what's gonna

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happen to me next, and I don't know

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how long I have, especially with

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the abilities that I'm used to.

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I've realized now that it's no longer a

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wise decision, a good strategy for me to

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invest time, money, and energy into the

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years away future to be better than at

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the expense of anything I can do today.

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'cause that future is not guaranteed

: 00:19:32

and the abilities I have today

: 00:19:34

are not guaranteed tomorrow.

: 00:19:36

And things can get much worse.

: 00:19:38

For me, things can get much worse

: 00:19:41

overnight and in having this disorder

: 00:19:46

for more than 20 years, I have

: 00:19:48

become very good at, and I've put

: 00:19:50

a lot of effort into being able

: 00:19:52

to hone in on what has improved.

: 00:19:56

Like I can play guitar sometimes now

: 00:19:59

and I wasn't able to for many years.

: 00:20:02

So I'm gonna do the things I can whenever

: 00:20:07

I can, while I can like playing guitar.

: 00:20:11

And now this podcast,

: 00:20:13

it's something I can do.

: 00:20:15

It's something I'm good at.

: 00:20:17

It's something that's good for my brain

: 00:20:19

to monologue from one episode to the

: 00:20:21

other, and if my ability starts shutting

: 00:20:25

down, this might be the last one to go.

: 00:20:29

Just like anybody else, I wanted to do

: 00:20:32

this when I won something like this.

: 00:20:34

When I won, I did not win my 2022 notes.

: 00:20:40

Say at least I broke even.

: 00:20:43

I did not break even.

: 00:20:45

I lost.

: 00:20:47

I lost at my goal of fixing myself

: 00:20:51

so that I could have the type of

: 00:20:53

life that I liked, the type of life

: 00:20:56

that I want, but I'm not stupid.

: 00:20:59

I know that just staying

: 00:21:00

alive past 24, past 32.

: 00:21:04

Past 40 is a huge accomplishment

: 00:21:07

in itself, and maybe some of the

: 00:21:09

things that I've achieved along the

: 00:21:11

way might be or seem even bigger.

: 00:21:15

Despite all this, many people who

: 00:21:17

know me will tell you that I am one

: 00:21:20

of the happiest people they've ever

: 00:21:21

met, and even some people who met me

: 00:21:25

in 2024 for the first time will say

: 00:21:28

that he's probably one of the happiest

: 00:21:30

looking people they've ever met.

: 00:21:32

The more I do this music thing,

: 00:21:34

I realize it's much less talent

: 00:21:37

and almost all hard work.

: 00:21:39

Same with the happiness thing.

: 00:21:41

It is less what I was born with or

: 00:21:43

how I was raised, and much more the

: 00:21:46

things I've done every day in my

: 00:21:48

head to have the best day I can.

: 00:21:52

I expect the next episodes to be

: 00:21:54

much more fun, much more funny,

: 00:21:57

much more interesting and joyful.

: 00:22:00

And at the same time talking quite

: 00:22:03

a bit, a lot actually about mental

: 00:22:05

health and health improvement.

: 00:22:08

'cause this combination has been

: 00:22:10

my way of trying to get better.

: 00:22:12

And I believe that it's a great way

: 00:22:15

to actually consume heavy information.

: 00:22:19

And that's why I recorded this episode so

: 00:22:21

that I don't have to start from scratch

: 00:22:23

every time and can refer back to it.

: 00:22:26

So if I'm doing a solo podcast,

: 00:22:28

I can actually zoom into

: 00:22:29

something and talk in detail.

: 00:22:32

Or if I have a guest on and

: 00:22:33

they say they're struggling with

: 00:22:35

something, I can be like, when I

: 00:22:37

had this, this is what it felt like.

: 00:22:40

Or, when I had this, this is

: 00:22:41

what I tried to get better.

: 00:22:44

And anybody who's listening, if you

: 00:22:45

have a disorder, then sometimes it's

: 00:22:48

just nice to re relate, but even

: 00:22:50

more you can be out of ideas and

: 00:22:53

just hearing these conversations

: 00:22:55

can sometimes spark an idea.

: 00:22:57

And if you don't have a disorder,

: 00:22:59

sometimes it's just good to hear.

: 00:23:02

These words and know these words and

: 00:23:04

thought streams, just in case something

: 00:23:06

happens to somebody around you.

: 00:23:08

And more importantly, somebody like

: 00:23:10

me wonders, well, if I had to do

: 00:23:12

all this just to survive, what

: 00:23:16

if somebody who does not have

: 00:23:17

a disorder does these things?

: 00:23:18

Like would they be the best

: 00:23:21

of the best that they can be?

: 00:23:22

Would they soar and be

: 00:23:25

completely unstoppable?

: 00:23:28

When I was much younger back

: 00:23:30

in college, anytime a woman

: 00:23:33

who was who I was interested in

: 00:23:35

told me, you're really funny.

: 00:23:37

I thought I was amusing and

: 00:23:39

mischievous to whisper in her ears.

: 00:23:42

That funny is number seven on

: 00:23:44

the list of things I'm good at.

: 00:23:46

by my upper thirties, I still used

: 00:23:48

to say the same thing, but I realized

: 00:23:51

that with all the things I've had

: 00:23:53

to learn and get really good at, to

: 00:23:55

survive funny is probably number seven

: 00:23:59

on the list of things I'm good at.

: 00:24:01

So if you want to see some of

: 00:24:04

one to six on display and like

: 00:24:06

me whispering in your ears.

: 00:24:08

But more importantly, if you like

: 00:24:11

the idea of some joy, some fun, some

: 00:24:15

entertainment, while you figure out ways

: 00:24:19

of helping yourself along the way, then

: 00:24:22

bandying just might be right for you,

: 00:24:25

and I'll see you in the next episode.