Confessions of a Body in Revolt : Part 1 - The Spark
So... I am back after 7 years with a new post. A new series actually. A lot has happened in the last 7 years but the last 1.5 years have been nothing but cruel physical and been very transformative mentally. I have become a very private person over the years but this journey of the last 1.5 years is one that needs to be told and shared. And no it is not a fun one whatsoever.
For those who have never read any of my silly posts before, I was grew up in India and moved to the US when I was 23. For the most part physically I lived a pretty healthy life and other than recurring headaches that I had since I was 7 years old and no one could really solve and that learned to live with I never had any serious ailments not even many fevers and such growing up.
At 26 I got misdiagnosed in the US as being clinically depressed and turns out I had bipolar disorder which was correctly identified at 27. It is a long story but one of success which I never really documented but one I truly am proud of how far I have come. Years went by, even COVID era came and went by but I was still fairly healthy. And then in 2023 I started noticing that I never could empty out my bladder completely and trying to find out answers led me to a OB-GYN who figured out I had several fibroids outside my uterine wall that needed to be removed.
It all started with a very innocent myomectomy(fibroid removal surgery) that I had in India in Jan 2024. Although I live in the US, I had the surgery in India so I could rest at home in India after the surgery. Now I had an infection (fever, cold etc.) in India prior to the surgery and then a bacterial infection right after the surgery and I had to fight with the hospital doctors to be prescribed antibiotics which I got a few days after up and down of heavy fever in the hospital. I sincerely had no clue my life would turn upside down few months post the surgery. I was telling myself that 2024 was going to be my year. Perhaps it was because I was 39 at the time and I thought turning 40 was a big deal. Who knows, I was just deluding myself taking myself seriously. But my body had other plans. Post surgery, I started having health issues. I had several gastric issues which I wasn’t necessarily understanding and had never had all my life but I decided to just focus on recovery from surgery. Come April of 2024, I started having joint pains in almost every joint and it kept getting worse. It really started with pain in my fingers, I still cannot really make a fist till date and the pain then started spreading to all my joints. Then started a downhill journey of endless doctor visits. Mind you these are not simple pains that would go away when you move or take rest, these are pains that persist throughout the day hurting every joint and often debilitating enough to keep me lying in bed all day. Oh and the joy of having ever been diagnosed with something to do with mental health always prompts the question of perhaps you are just feeling low…well I was not. My body all day would be in pain and feel like it was beaten up by several people.
So towards mid of April, 2024 I first went to my primary care physician and told them about my pains and my gastric issues. They thought may be I had a viral infection and gave me Tamiflu and also gave me docusate sodium but warned that I might need to see a gastroenterologist. Surprise, surprise, neither did nothing. Then the doctor did some blood work, I don't even remember for what anymore and it showed nothing wrong. Then I ended up going to a different primary care doctor who also did some other blood work and the blood work again showed nothing. See, the funny thing that I found in my journey is that when tests don't show anything obvious or anything blatantly off, doctors often tend to lose interest. This doctor referred me to a rheumatologist and a gastroenterologist.
The pains kept getting worse. But just like for a million other people in the US, it is not easy to get an actual appointment with these specialists whenever you want. You first need to manage to get a referral and then wait weeks before you see an actual specialist. And in the meantime the burden of putting up with pain or dealing with your illness is on you, or you have the option of going to the emergency room and hope you will be taken seriously enough. In my case, I managed to see the Rheumatologist in June and didn’t get to see the gastroenterologist until August. I really didn’t expect what was to come after this. And no it was not a simple diagnosis of something even fatal, although months later I would often pray for something fatal atleast. But instead it was a series of appointments with some doctors simply dismissing me, my body completely rejecting anything and everything being put into it and my body basically just saying NO. I never did want to learn about it because who wants to deal with constant joint pains or weird gastric symptoms like constipation and when you try to relieve the constipation, you end up vomiting; but I learnt about it the hard way. What I learnt was that while you suffer with pains and symptoms and loads of bloodwork would be done on you and if you are one of the unlucky ones like me, you will be taken even less seriously than someone whose bloodwork clearly shows something is wrong. My bloodwork for ESR (Erythrocyte Sedimentation Rate) to detect inflammation, CRP (C-reactive protein) to detect inflammation, Complete Blood Count etc. which keep getting repeated till date didn’t show anything off.
Just when my rheumatologist was about to dismiss my pain and me, I had to tell him that my father has rheumatoid arthritis, which he indeed has but on a much smaller scale but his pains started with the fingers as well. That got me some attention from the doctor who was about to throw me out of the office. Now my rheumatologist said he suspected something called Seronegative spondyloarthritis (arthritis of the spine) but pending several X-rays and MRSs that he said I should get done, he initially given a painkiller called Celebrex and also told I should see a gastroenterologist as soon as I am able to get an appointment. I was asked to come back in about a month. What I am about to say warrants a whole book written on it but if you happen to have fairly shitty insurance coverage which many smaller companies end up giving out because I like to think people like me are exceptions and not the rule (but who knows), then you can be assured you can meet your out of pocket maximum easily, I have met it for 2024 and 2025 considering the million tests, X Rays, MRIs and other tests I get done mostly to find out very little. So in addition to the physical pains you can pile up the stress of medical bills too. With all the pains and no answers and my body not really responding to the initial painkillers, I decided to take a trip to India, thinking I will turn 40 at home and find magical healthcare in India. That didn’t quite happen how I expected. I mean I did still turn 40. And I realized turning 40 is no big deal. It is as lame as turning any age and in my case I found it lamer than usual considering all my joint pains but more on that separately sometime. I met a couple of rheumatologists in India. One of them being my dad’s rheumatologist and the other one who would later become my mother’s rheumatologist.
The rheumatologists in India looked at my X-rays and one of them said I might have seronegative rheumatoid arthritis and suggested I might benefit from a DMARD (disease-modifying antirheumatic drug) called Sulfasalazine, but that I should pursue treatment with my rheumatologist in the US as I might need long term care. Not bad at all. I then went to the next rheumatologist in India who took me for a ride a little bit and this kind of happened with me over and over with some doctors later in coming months. The next rheumatologist tried various meds on me and first said I might have fibromyalgia and then said I might have rheumatoid arthritis and then since his meds were being rejected by my body then told me my least favorite but most common thing I have heard over the years - this is just something related to your bipolar and something related to stress. I mean are you kidding me? The amount of pain I still have is in no way triggered purely by a mental health condition or stress. More on all the dismissals I have had to endure over the last several months in a separate post. But anyway defeated with all this and feeling purely dismissed, around July 8th or so I just decided to come back to US with a short stopover at Dubai. Dubai trip is significant because from here starts my nausea, vomiting, and the gradual beginning of my body starting to reject food. I reach the US and my body starts saying no to just everything. It gets pathetic after this as for months there is no reprieve and starts a journey of endless chronic pain, doctor visits, no clear diagnoses, my body rejecting food, my body rejecting meds and injections and feeling hopeless about getting anywhere with the pain and what is happening to me.
In my next post that I will publish in a couple of days, Confessions of a Body in Revolt - Part 2: Medical Maze, I will continue my journey and talk about what continued happening you will get a view into how rapidly I started becoming half my size and continued in pain while playing musical chairs with doctors.
