Hi folks! I’m Kia (some of you may know me as Celeste), and I’m a chronically ill writer & spiritual worker living in New Orleans.

I was recently diagnosed with hypermobile Ehlers Danlos syndrome, and I need your help to continue to seek treatment so I can regain some control over my body and some relief from the pain and dysfunction I experience.

I’ve been dealing with chronic pain and debilitating, disabling health conditions for many years. Many of my friends and family members recall that I struggled with crippling GI issues, fatigue, and unexplained pain from childhood. These symptoms were always dismissed as anxiety, depression, or untreatable and vague conditions like IBS.

My symptoms got progressively worse between 2016 and 2018, causing me to struggle with full time employment. In 2020, following my first bout of Covid, I stopped working outside the home altogether and switched to being fully self employed. In many ways this has been wonderful, as the flexibility allows me to account for my body / health fluctuations while still earning money. However, freelancing is not stable income, and I do not have the financial safety net of employer subsidized health insurance or paystubs that would allow me to access loans etc. I have been intermittently relying on credit cards for several years to afford larger expenses like health care, insurance, and emergency situations. This has put me in significant debt.

In 2021 I was put on a waitlist to be formally, medically evaluated for Ehlers Danlos Syndrome (EDS), an inherited connective tissue disorder that impacts every system of the body. EDS is often comorbid with other conditions, including Mast Cell Activation Syndrome, POTS (Postural Orthostatic Tachycardia Syndrome), and Chiari Malformation. Several healthcare providers had mentioned this as a possible answer to my lifelong health problems. After years of seeing doctors who dismissed me or refused to take my pain and discomfort seriously, I was excited by the opportunity to finally get some answers.

The clinic I was referred to is one of the best in the country for diagnosis and treatment of this “rare” condition. At the time, the clinic took insurance. Sadly, by early 2024 (when I was called to schedule my appointment after an almost 3 year wait), they had gone entirely private and do not accept insurance of any kind.

Over the past few months I have been undergoing the diagnostic process at The Fascia Institute. It has already been life changing: I am finally being seen and heard by medical professionals who are experienced, competent, empathic, and willing to help me.

Sadly, the out of pocket costs for this process and for future diagnosis and treatment is considerable. While I have health insurance, the deductible is very high (almost $7000), and I am unlikely to meet it this year. This means that every blood test, x-ray, MRI, and appointment with my PCP, my clinic team, and the specialists I am referred to is almost entirely self pay. Any treatments I am prescribed moving forward will also be completely out of pocket, until I can pick up better insurance next year.

Right now, I have been managing by putting my visits on credit cards. However, with existing debt from trying to function with a disability for the past five years, and with a growing list of appointments scheduled that will be hundreds of dollars out of pocket every time, I am getting scared and running out of options.

I am asking for help to try and catch up financially, as well as to cover current medical expenses and the big, out of pocket expenses that are coming in the next few months. Once I have cleared my debt, I will be in a much better position to try and do this on my own (barring an unforeseen diagnosis or possible need for surgical procedures). Right now, without family support here in the United States, I am floundering.

I will do my best to be fully transparent about costs, but often I don’t have a full sense of what an appointment or procedure will cost until the bill is due. What I do have, for now, is an itemized list of out of pocket costs so far:

5 Diagnostic Appointments at The Fascia Institute

The total cost for evaluation at the clinic is $2225.60.

Imaging

So far I have had one diagnostic MRI and X-rays of my neck taken. The out of pocket cost was $446.74. I have an upcoming MRI with an estimated bill of $336. I will be having X-rays of my knees, hands, shoulders, hips, and spine taken at the same time. I have no estimate for these X-rays at this time.

Blood tests & other diagnostics

Each time I have a blood panel done, I pay around $83 out of pocket. I will likely have several more blood draws done before the end of the year to monitor the efficacy of the supplements I’ve been prescribed.

Specialists

So far I have had two appointments with neurologist at Paradigm Health Services: a total cost of $330.

I have further referrals to a nutritionist to evaluate and resolve some of my GI issues, and to a cardiologist to be evaluated for dysautonomia (likely POTS). Once again, I have no idea about the out of pocket costs for this at this time.

As a rough estimate, I have spent about $3500 on health care over the past two months. While this may not sound like a lot, for someone on an unstable income who has been struggling with undiagnosed disability for years, it is an unexpected and overwhelming amount. Knowing that I have another several thousand due in the next few months, and likely more as further testing and treatment is required, is terrifying.

Had I been well enough to work a “normie” job for the past decade, this would be less of an issue. I have been fighting so hard to remain self sufficient, but every time I get a little ahead, I am blindsided by another emergency or by a sudden decline in my health that has me in bed for months, barely able to work.

I am asking for support from my community to finally get back on my feet again, so I can figure out what is going on with my body, find treatments that help, and be able to cultivate a sustainable relationship to my work that allows me to be self sufficient again. Ironically, I have had one of the best years in business yet in 2024 - I would be absolutely thriving were it not for health issues causing delays, setbacks, and canceled plans. I want a chance to do the best I can for myself, my loved ones, my community, and my clients.

Asking for help feels weird and gross and hard. I understand that I am a privileged in many ways, and there are a ton of things going on in the world right now that warrant greater attention and focus. But I am sick and struggling, and I am trying to get better at asking for what I need. I am so overwhelmed by life and in a lot of pain daily. I am doing my best, but right now, I can’t do it on my own.

thank you so much for reading. I’ll offer updates as often as I can.