I’m sitting here at 3 am wondering how many of us are going into debt due to our chronic illness. We lose so much of ourselves, our careers, our family and friends. There’s depression, anxiety, grief, and loss. But then there’s the actual monetary cost.
I’ve been unable to work since 2012. Since 2017 (after three denials and a lawyer’s help) I’ve been receiving total and permanent Disability payments for chronic daily migraine, Fibromyalgia, situational major depression, situational generalized anxiety disorder, and degenerative back and neck issues. This is my only source of income and places me well below the poverty level. But somehow I make too much money to qualify for Medicaid. This makes me responsible for the twenty percent of the bills that Medicare doesn’t cover.
For me, this includes co-pays for my prescriptions (many of which are outrageously priced and/or not covered by insurance), monthly psychiatrist visits (medication for depression and anxiety $25. per visit), my psychologist weekly for individual sessions and twice each month for group pain management sessions $6. per visit., and visits to my pain management doctor monthly (more often for trigger point injections, cortisone injections, therapies, and medication changes $30.-100. per visit). Not to mention Medicare yearly deductible ($233.) and yearly concierge fee ($1400.) for pain management. My pain management doctor is the only practice within 100 miles of my home that will prescribe the opioid that I need. (I’ve gone through many, many medication failures before resorting to opioid therapy.)
My pain management doctor recently referred me for physical hydrotherapy (in pool, non-weight bearing) to help with my muscle and joint pain. The recommendation is twice weekly to start with $30. copay each visit.
I haven’t even gotten to the items I’ve purchased to try and get some relief from my chronic, constant pain. Noise-cancelling headphones, migraine eyeglasses, blackout shades for my windows, ice packs, heating pads, cervical pillows, specialized lighting, just to name a few.
Then there’s my wishlist of items that would make my life better that I won’t ever be able to afford. Ice cap, weighted blanket for anxiety, Cefaly (or many of the other options for non-medication pain relief), etc.
I’m not whining or looking for pity. I am but one person going through the chaotic, challenging, horrifying life of a chronic pain patient. We are many, coming from all walks of life. To some, money isn’t an issue. To most, it’s critical and unattainable.
Something has to change. More comprehensive Medicare coverage, more realistic disability payments, assistance from drug companies and medical device companies….. Something. Anything to make our lives a bit easier to handle. Mentally, physically, and financially. Stay strong my fellow pain warriors. Always keep fighting.