An Effort For Recovery - Help Nisha Survive

Calling on dear friends, family, and the greater virtual community…we need your help raising life-saving funds for one of my most cherished friends, Nisha Chawla (Graves).

Nisha’s immune system began mysteriously shutting her organs down in March 2021. After a year of seeing specialists, she was finally diagnosed with MCAS, MCS, PIDD, CIRS, and two mutations to her MTHFR gene, causing her to spend the past year in medical isolation.

The first year, Nisha continued to work as much as her pain and loss of mobility would allow. When her cognition and memory began to fail last April, Nisha made the difficult decision to close her salon studio, a business she spent the past decade building. She has since been too ill to return to work, instead surviving on a limited budget depending entirely on her savings.

Until just a few weeks ago she has taken this on entirely alone without asking for help. Sadly, last month, the account Nisha relies on to pay for medical treatment was liquidated without her knowledge or consent. Until this matter is resolved, she can’t afford to pay rent, basic living expenses, or the medical program currently saving her life. This could not have come at a worse time.

We are seeking to raise 5k ASAP to retain legal counsel and defend the liquidated account. Anything raised beyond that will help her pay her June 2023 rent and cover basic living expenses while she gets back on her feet.

Please - if you can help in any way, small or big, any amount will help. I have seen her struggle alone for years and almost lost her a few times. We are lucky she is still here today and I’d do anything to hear hope in my friend's voice again.

***If you’d like to know more about Nisha’s journey, please continue reading her account below:

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A Word From Nisha:

I know how tough things are for all of us right now. Over the past two years, both my pride and compassion for the harrowing situations of others kept me from asking for help. But with financial walls closing in on me and only surviving immediate family member in memory care for early-onset dementia, I have nowhere else to turn. I need help.

It Started Slow

At 18, I was diagnosed with Endometriosis and PCOS. Almost a decade later, I was diagnosed with Celiac Disease and a multitude of other food allergies. After a few years, my hair began falling out in clumps, its thick texture changing to broom-like and sticky. Strong nails became paper thin, my eyebrows fell out, and despite proper diet and exercise, I began gaining significant weight. Once an accomplished classically trained vocalist, I abruptly lost half my vocal range and the quality of my voice changed - it felt like I was singing through a stranger's body. Despite such clear symptoms, all my blood tests came back normal.

In March of 2021, following a medical procedure, I awoke to a throat so swollen I was unable to turn my head in either direction. I was unable to stay awake for longer than 15 minutes at a time, hard swelling pooled around my armpits and knees, and my stomach distended like I was in the third trimester of pregnancy, except it felt like there was a stiff, inflatable ball in my stomach. In the nights that followed, my midsection swelled more, painfully stretching my skin each time. My heart raced, I couldn’t seem to get enough air, my brain felt underwater, my thumbs became horned with arthritis. The cartilage in my ear collapsed under the weight of wearing a medical mask for a single day. When moving, my ankles and knees slid in their sockets, and when I stopped my limbs felt frostbitten and numb. One day, while blowdrying a client, my brain stopped controlling my left arm - like I was a marionette controlled by someone else. Over the next 4 months, I’d gain half my body weight. Again, all my tests were normal, save one. My cholesterol was elevated.

I spent a year seeing doctors while continuing to decline - hoping someone could diagnose what was happening. Climbing stairs now seemed like a superhuman feat and after becoming incontinent, I avoided accidents by sleeping in my bathroom. After a bad fall left me unconscious, Samantha began helping with basic household tasks. Doctors prescribed medications for my narcolepsy and pain, but those medications barely made a dent in my myriad of symptoms, and I refused to take painkillers for fear of becoming dependent.

One night, I realized no one was coming to save me. If I wanted to stay alive - it was up to me. When I could stay awake, I obsessively searched medical journals, forums, books, and online support groups for patients with similar symptoms. Through this research, I finally found a specialist familiar with cases like mine.

Official Diagnosis and Treatment

I was diagnosed with Mast Cell Activation Syndrome (MCAS), Multiple Chemical Sensitivities (MCS), Primary Immunodeficiency Disease (PIDD), and Chronic Inflammatory Response Syndrome (CIRS) in January 2022. My organs were so inflamed they were starting to fail - so why were previous tests in normal ranges? This specialist explained how chronic inflammation can lead to overloaded detox pathways (liver/lungs/lymph/digestive tract). With pathways blocked, the body can’t efficiently transport toxins through the bloodstream, negatively affecting each test’s efficacy. With my organs compromised, my elevated HDL cholesterol and extreme weight gain saved my life, keeping me from going septic. But what started the inflammation? After evaluating a decade of past blood tests, she found the data we needed. I had been battling an undiagnosed viral infection since 2016 which triggered a massive immune response while my body spent 5 years trying to locate it. Now our biggest hurdle was getting my MCAS under control to keep me from developing Lymphoma.

Still, I continued to decline - developing dementia. One day, in the middle of a blowout, I forgot how to hold a hair brush. At that moment, I knew I had to step away from the business I’d spent the last decade building - it broke my heart, but I closed my salon studio that April.

Mast Cell Activation Syndrome is an interesting disease. In layman’s terms, my body is allergic to everything - people, places, and things - because my nervous system views anything and everything as a threat. MCAS, MCS, as well as my body’s inability to hold onto antibodies long enough to use them (PIDD), made limiting unnecessary contact crucial, so I completely withdrew socially. This is why most who know me haven’t seen me in 2 years.

In June, I began saying my goodbyes. My brain damage was so bad, I was getting lost in my home and avoided responding to texts - by the time I finished typing a word, I’d forget what the sentence was supposed to be about. Out of curiosity, I timed myself and found it took me 18 cumulative hours to write 3 sentences. In just over a year I lost more than any single human should have to lose. I lost my intellect, my memory, my talent, my body, my beauty, my mobility, my career, most of my finances, and my community. All I had left were my cats, my home, and my belongings.

Then my doctor made a unique suggestion, my environment could be responsible for my illnesses’ resistance to treatment. See, in the last 18 months, both my cats developed autoimmune conditions, one even developed Mast Cell tumors in her ears. Noting how much better I felt in nature, she suggested healing outside of the environment I became sick in, moving anything sentimental to storage and donating or selling the rest. Essentially: take nothing with me, as there was a risk of cross-contaminating my new environment with whatever I was reacting to in my current environment. It took 3 months to find a place that didn’t make me immediately sick upon entry, but with new keys in hand, I left my home and every single thing I owned behind in late August 2022.

And there, in a new apartment, with only my cats, an air mattress, one set of linens, my phone, and two changes of clothes - I began a new medical regimen. I turned the apartment into a “clean house” and went into total isolation, seeing doctors remotely to limit reactivity.

And slowly, very very very slowly, I began to heal. And amazingly, so did my cats.

How Am I Today?

From late August 2022 to January 2023 I was so fatigued it took all my energy to feed, clothe, and bathe myself. But one day my dementia began reversing and I had enough energy to follow my doctors' full protocol of manually detoxing my organs. The process takes me four hours every morning but gave me the first truly measurable progress I’d made in two years.

Two months ago, a prescription caused my skin - from my toes to my ears - to burn and peel off over and over again. My extreme reaction led to investigating a new diagnosis, confirmed through testing: I had two mutations to my MTHFR gene. It’s a rough diagnosis for anyone, but for someone with MCS, MCAS, and CIRS - it was the missing puzzle piece that explained my organ failure: my organs have always had difficulty processing toxins efficiently on their own.

After adjusting my scripts, I finally started to have the energy to do more than basic tasks. The brain I missed so terribly began feeling familiar again, I lost 20 lbs of inflammation in a few weeks, and my lungs started clearing for the first time in 2 years. My doctor cleared me to return to work part-time remotely. I couldn’t return to hair, but for the first time since I got sick, I had enough hope to make plans for a career pivot.

But, when it rains it pours, right?

As Samantha mentioned, on April 6, 2023, the account I’ve been relying on to pay for treatment was liquidated without my knowledge or consent. Until the matter is legally resolved, I have no income. My medical treatment is not covered by insurance and my disability case is pending, so monthly medical bills average around $1200, and that's on top of rent, groceries, basic utilities, and veterinary services.

In Closing

I’m beyond grateful for listening to my body and learning from it. It’s been a grueling process, one I wish upon no one, but I've come to terms with my new limitations and feel my gratitude for life recharging. I’ve come so far on this medical journey and have made such a profoundly meaningful pivot toward my authentic self within the past few months. What once felt like a cataclysmic mystery might one day become manageable. I miss so much from my healthier life (the ease, autonomy, my beloved career), but I miss you all the most. I can't wait till I’m healthy enough to share space with you all again.