Back in 1996 when finally diagnosed (after over ten years and as many doctors refusing to test me), the company I had worked for for many years kept me in limbo. They wouldn't fire me so I could collect unemployment, yet they wouldn't let me return. In the interim, my landlord evicted me.
I started my business, Ad Ventures in 1997 shortly after being treated with several weeks of antibiotics for Lyme disease. Lyme disease I had since 1980's when over 10 doctors refused to test me-even with a bull's eye rash. I had to survive somehow. as a single woman with no other financial support, I had to try and pay my bills. I created a home based business and actually started to feel "okay" for a while. I can do this!
I'd visit specialists for heart flutters, migraines, weakness, muscle spasms, dizziness, low body temperature, weight gain, floaters, sweating, nausea, throat and ear infections, brain fog, unrestful sleep, cognitive issues, neuropathy, and on and on. No one connected the dots. When I mentioned Lyme, EBV, CFS, Fibromyalgia - all of which I had been diagnosed with back in 1996, I never received a straight answer.
So I toughed it out, as many others. I changed my life to fit my illnesses and symptoms.I had to stop accepting invites to parties, BBQs, weddings and other events. I could not commute, sit, stand, think clearly. My pain would also wax and wane, moving like a snake though my body. Sometimes nerve pain, sometimes bone pain, sometimes muscle pain. I just never knew what combination of symptoms would visit me.
Family and friends drifted away, slowly at first. I realized that although dozens attended my parties over the years, only two or three remained in touch when my flare-ups would surface.
After many years of running on the hamster wheel of doctors,tests and prescriptions that left me feeling even worse, I stopped seeing doctors, for the most part, over five years ago
(I think five or six years, timing is not my strong suite with cognitive issues). I also lost my health insurance. Being self employed, I only had a few plans to choose from, I could no longer afford the astronomical premiums after breaking both ankles at the same time (yes, really), so since no doctor was helping me, it seemed the only thing to do.
Which leads me to now. I had to jump back on that hamster wheel. Doctors, tests, evaluations all over again because I have come to the sad realization that I must apply for disability. And nothing has really changed. No help, advice or answers. Glazed over, condescending looks, at best. I put it off applying for disability forever for a few reasons. I love my work. I don't have the strength or cognitive ability to compile and organize all my medical data to complete the application process, even with the help of a disability firm, I don't want to give up. But, here it is - I can't afford to live on disability. I am in foreclosure. I have absolutely no one left in my life who will help or care to even check in on me in the "real" world. .
My business is failing simply because I cannot followup, keep the bookkeeping in order or work on any project for long. I still welcome the occasional order or small project, because I have to pay the utilities,dog food, meds, etc..., but my office is a mes of client folders, notes, and of course, bills.Some days, or more accurately hours, I can pull through. Unpredictable symptoms make it impossible for me to continue to do what I love for any amount of reasonable time. My business requires creative thinking, strategic planning and many estimates and proposals...none of which guarantees a penny in my pocket.
So while ignoring the bills and foreclosure notices when I can, I am concentrating on answering all the delightfully confusing questions about my medical history on my disability firm's online questionnaire. Wish me luck!
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