TLDR: I’m reaching out for mutual aid to get through a difficult chapter; for the last several years I’ve been battling chronic illness that has halted my career and altered every aspect of my day to day life. I’m in need of ongoing aid as I endure the legal battle for disability income. This fundraiser will help me to manage monthly expenses including food, phone and utilities payments, debt payments, and housing stability.

The Tea:

You likely know me as a highly adventurous person who loves to travel and be active in nature. I’ve spent most of my adult life being nomadic, backpacking, living in tiny homes, making art, playing music, and working high energy jobs like kayak/raft guiding and circus sports. That all changed drastically when my health collapsed and I became disabled.

I had a major health crisis in 2018 and ended up returning to Montana to live with family. For years prior I had been experiencing a page long list of symptoms and inability to keep up with peers in my active lifestyle. When I went to the doctor for these concerns they didn’t address any of my recurrent and escalating symptoms and instead looked only at anxiety, referring me to counseling and psychiatry while neglecting lifelong physical conditions that were getting progressively worse.

I applied for disability in 2018 and was denied—I didn’t know then that it’s typical for young adults to have to appeal multiple times and get an attorney to have any chance of approval, so I accepted the denial and began planning for my future. I knew I needed more financial stability to achieve my goals and my parents offered their rental apartment so I could attend college. With their housing support I went through trade school from 2019-2021.

Despite struggling to keep up with the demands of college and working, I eventually moved into a rental house with roommates and began my career as a welder and blacksmith, building high end ironwork in luxury Montana homes. I had plans to develop those skills for metal art projects of my own and was also building up my electroforming business. This path to financial stability was short lived as my health continued declining; in the summer of 2022 my health crashed even more severely. This left me with no choice but to go on unpaid medical leave. My conditions had escalated beyond the point of “pushing through it” and I was worse off than ever before. To my dismay, weeks and months passed without any improvement and no indications from doctors on a cause, cure, or relief from the debilitating chronic symptoms. By this point I was no longer able to safely drive or participate in activities outside my home and my life became a relentless routine of disappointing visits with doctors. Every day came with a struggle to get out of bed, to hold conversations or carry out self-care tasks, being forced to accept that I needed to rely on increasing support to get by. I could no longer afford to live independently and moved a few hours away to live with a friend who helped me with basic support needs like housing, meals, rides, caring for my dog, etc.

Since that time I’ve been diagnosed with Hashimoto’s thyroid disease, papillary thyroid cancer, POTS/dysautonomia, hypermobile EDS, MCAS, AuDHD, cPTSD, complex sleep disorders, and mold toxicity. There are still other conditions I’m being evaluated for as my medical team works to understand the full scope of my symptoms. Getting properly diagnosed was no small feat—I’ve had to endure many doctors who turned to gaslighting rather than accepting the challenge of a patient with complex chronic illness. The medical system is not designed to support these conditions and this struggle to actually get help is not unique to me or my situation; it is sadly all too common in chronic illness communities around the world. The process of referrals and seeing doctors for each condition often takes years due to long wait times for specialty care and limited providers who are trained for these conditions. Insurance also requires doctors to treat one “problem” at a time so systemic, multi-system illnesses are not properly supported in the current model of medical care.

In 2024, due to the rarity of some of my medical conditions and need for ongoing housing support, I moved from Montana to North Carolina in hopes of accessing the specialists who are capable of managing the rare conditions I’m dealing with. This move has come with a lot of challenges but ultimately, I am receiving better medical care and I was finally approved for a home care aid. This has helped significantly to reduce the reliance on friends and family to support my daily needs, though I am still reliant on personal and community support for housing and financial hurdles. I’m currently living in a rural area in a camper with limited amenities. Having to accept less and less comforts of modern living due to financial restraint is extremely challenging while navigating disability accommodation needs and doing my best to support my health.

Being on a fundraising platform, the crux of this story is financial hardship. I’m in the long and arduous legal battle for SSDI. It often takes many years before reaching a resolution and receiving any financial assistance through that channel. Since 2022 I’ve been living on credit cards and selling personal belongings to pay for bills and personal expenses . I currently have incurred about $30,000 in high interest debt and have maxed out my credit card/personal loan limits. I’ve started this fundraiser with a goal of $10,000. Any contributions, whether over or under that goal, will help immensely in managing the financial burden caused by becoming disabled.

In whitewater safety training I learned a lot about the importance of self rescue. With that mentality I have been diligent in making healthy lifestyle choices to manage these conditions and steadily adapting my life to accommodate my disabilities. If I do get approved for SSDI, living on government disability insurance is no easy or comfortable life so it is my hope that even if I am permanently disabled, I may continue taking small steps to build up my jewelry business as a long term financial independence plan. Every day I do my best to continue pushing through the hardship and believing in my ability to overcome obstacles. My hope is to return to the adventurous lifestyle I love while making a living running my own business focused around my artistic abilities; I also have to be realistic about my limitations now and in the long term future. Currently all jewelry sales that I make go directly back to materials and operating costs to keep the business afloat and I don't have the functional capacity to treat this as a full or even part time job. I also have no longer been able to afford a suitable studio space to support creating new jewelry which poses its own obstacles. I am simply doing as much as I can as often as I can to keep making progress towards financial independence and I’ll continue to do that indefinitely.

My goal with this fundraiser is simply to keep my head above water—right now that entails making monthly payments on my credit cards & personal loan, accessing out of pocket medical care & treatments, purchasing essentials like groceries & hygiene products, and accessing the costly day-to-day supports for living with chronic illness. Those who wish to support my jewelry business directly can do so through my website, www.electrofae.art

Chronic illness has challenged my attachment to self-reliance/hyper independence and humbled me to ask for support from others in many aspects of life. I thank you for caring to read my story and showing support in this difficult time. I hope to one day be back on the road, giving back to others in need, and making new memories with my beloved friends and family that are scattered across the globe.

Yours truly,

Nikolette (aka Niko Nimba)

Monthly Expenses Breakdown:

Other expenses not included: disability aids, subscriptions to instacart for curbside grocery pickups, amazon prime for household and medical items, website hosting for jewelry business, IRS tax payment, costco membership, canva membership, cloud storage fees, etc.