Disabled artist drowning in medical debt
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I need help. The cost of chronic illness(es) has continued to take control of my life and I want to take some of that back. I moved to Canada hoping the medical system there would help me get better… Long story short- Covid happened and I continued to get worse. I was in and out of the ER, enrolled in the chronic pain program for a year (they only give you a year), underwent PT, OT, a kinesiologist, trigger point injection therapy with a physiatrist (monthly), a corticosteroid injection into my SI joint, a CT scan of my brain, hip ultra sounds and x-rays, a marijuana doctor to try cbd and thc oils, acupuncturists, massage therapists, an ophthalmologist, several optometrists and eye exams and I wasn’t getting better. The cost of surviving outweighed how much money I could make living on my own. I was experiencing ocular migraines which made it so I would stop being able to see in focus for up to 8 hours at a time. Some times that accompanied headaches- sometimes I would just lose my sight. This started happening up to 4 days a week- seemingly at random. This was on top of chronic pain that felt like an aching flu-like pain that I experienced daily.
In fact, I’ve been in pain for over 6 years now and I don’t remember what it’s like to not be in pain.
When I moved to Canada I didn’t think my productivity would continue to plummet. When it did, I started charging groceries and bills on credit cards. Anything I could charge I would since i knew I had to pay rent by cash. Public transit to get to doctors appointments was charged. Archie’s bills were charged. It felt like I was digging a hole I could never get out of. I finally reached a breaking point where I called my parents and told them that I couldn’t keep doing it. I didn’t want to admit to myself that I had lost my independence. There was a part of me ashamed of being disabled. I felt like I was a failure. I had already changed the world around me in my apartment: specific office chair so I could sit longer hours in less pain, ergonomic keyboard, complete change in diet (no soy, gluten, dairy, or meat) alongside new gadgets in the kitchen like a salad shooter bc cutting vegetables was too painful or standing was, an adjustable desk, larger tablet, a planner system that’s color coded, a weighted blanket, an acupressure mat, a u shaped body pillow, and the list goes on…
I went from making 100k to under 20k a year and dealing with exponentially more costs. Living with “mild memory disturbance” ALSO means every task takes me 3-4 times longer to complete than it used to because I am processing the tasks slower. That translates to: I work the same hours but accomplish 3-4x less- thus making less money.
When I took a step back I realized that I had several disabilities- mild cognitive impairment, depression, anxiety, chronic pain, limited mobility, ocular migraines. I even grew an extra tooth before I left Calgary and I had to have surgery to remove it. All of these are symptoms or tie into fibromyalgia (and potentially ankylosing spondylitis). I also experience exhaustion- where I need to take naps every so often (I will literally start passing out at my desk) and I struggle with getting to sleep and staying asleep. I had a complete mental break down when I confessed how hard things had been for me to my parents. I am lucky they were financially able to dip into their retirement to help move me down to live with them in Florida, but it made me feel guilty. I wanted to be the daughter that took care of them as they aged. Instead, I’m in my 30’s living with them once again- trying to find some semblance of normality and have hope that I could one day be on my own again. A good while after living in FL I contacted disability lawyers. I was told that since I’m a woman in my 30’s with fibromyalgia- I was the WORST POSSIBLE CASE to be approved for disability.
I'm too functional to be disabled and too disabled to be functional.
I’ve been here 2 years. In that time I have assembled a pretty strong health care team. I see neurologists, an anesthesiologist/ pain management physician and her team, my PCP, a gynecologist, a psychiatrist, a psychologist, a neuropsychologist, and I’ve finally been referred to a rheumatologist. I have had 3 stellate ganglion block procedures using ketamine, multiple rounds of blood panels and x-rays, EEGs, EMG, skin punch biopsies to test sensory nerve fibers in my legs, brain MRI, neuropsychological testing, and too many visits and follow-ups to count of normal doctors appointments. I’ve also managed to see a dentist and have an annual eye exam. My ocular migraines are basically gone thanks to Nurtec and my neurologists for recommending it to me. My SI joint pain is gone thanks to the SGB from my chronic pain doctor and my pain has been decreased.
I’m currently on 9 different medications on a normal day and I have yet to have any real improvement on the following: non-restorative sleep, insomnia, impaired memory and concentration (brain fog), cognitive/neurological symptoms such as difficulty speaking known words (dysphasia), constant activation of the stress response, hypersensitivity to noise, smell, light, temperature, muscle and joint stiffness, cramps and menstrual related problems, depression, CPTSD and anxiety, delayed reactions to physical exertion or stressful events, heightened sensitivity to pain while still experiencing widespread pain and fatigue.
I’ve experienced a loss of independence, guilt and shame, a financial burden, social isolation due to location and loss of spontaneity, work limitations, weight gain, limited mobility, a loss of hobbies due to medical appointments taking up my time, energy and money, and relationship strains.
My parents have been helping me out with my student loan payments and since I live with them it has lowered my cost of living (no rent, electric bills, internet bills, etc), but I’m still struggling to make my credit card payments each month. I enrolled in a government plan that lowers my interest rate to 3% but I am required to make a $793.35 payment monthly and I have been STRUGGLING to meet that goal. All of my money goes to paying this bill, taxes, food costs, and continued medical bills (medications, co-pays and various costs for testing and procedures) alongside basic needs (work supplies, toiletries, hair cuts, etc.).
I really need help to finally take down the debt incurred from my medical nightmare the past 6 years. I just turned 39 on March 9th and my health crashed right before I turned 30… I have spent the entirety of my 30’s under extreme stress wondering how I was going to pay medical bills. If I could eliminate it, I truly feel that I might be healthier with less stress weighing on my mind 24/7.
I also would be able to save the funds to try other therapies that are out of my price range like TMS or the Shirley Ryan Labs Functional Restoration Program or even trying the nasal spray ketamine program. I really want to be able to get back to aerial acro or be able to roller skate without intense pain. I want to be able to spend more time with my family and focus on healing.
Any money that is contributed will go strictly into paying off the debt accrued on my two credit cards. I can’t thank you enough for reading this far- let alone if you donate or have helped me in the past. Thank you thank you thank you!
Here are some links on the cost of chronic illness and fibromyalgia.
https://www.myseveralworlds.com/2020/08/20/the-cost-of-chronic-illness-and-maintaining-an-income-when-you-are-chronically-ill/
EDIT TO SHOW WHERE THE BANK ACCOUNTS ARE STARTING:
Organizer
Kelly Fitzpatrick
Organizer
Navarre, FL