I have suffered from Temporomandibular Joint Disease for 37 years. The pain started when I was 16 and I live with that pain every day. My right joint broke down first, and more recently the left joint. The muscles in my face no longer work properly, and I have lost most of my connective tissue. I have bone on bone on both sides of my face, and most recently my airway has begun to narrow. I am losing the ability to speak, eat, and breathe properly. I am waiting for my prosthetics to be made, which will take months.

If you are at all familiar with this disease, you know that NYS insurance does not cover anything related to this joint (the medical community nicknamed the TMJ “The Money Joint” because of the excessive costs to patients). I have paid out-of-pocket for years for treatment and am all too familiar with trying to fight the insurance companies, their denial and appeals process, and the games they play. Every other state in this country mandates coverage for this joint, the only life-sustaining joint in the body. NYS finally told insurance companies they had to provide coverage a few years ago, but left it up to the insurance company to determine how much. I can assure you it is essentially zero.

Since May, when the left joint completely broke down, I had to start treatment again, and pre-surgical testing and scans. In just a few months, my out-of-pocket medical expenses are $6,554.21, as of today. I’m on some payment plans with all of my providers. I pay on my medical bills and I pay my rent. RG&E has been helpful with me keeping my electric on. NYSEG is trying to be helpful with me keeping my gas on. I’m months behind on my car payment. Nobody should have to worry about insane medical expenses while trying to still work with debilitating pain every day. It adds to the stress which adds to the pain and increases lack of sleep. I’m falling apart and I’m drowning in medical expenses right now. I hate to ask for help, ever. But I’m putting my pride aside for my health and for my children and asking for help. If you can help, please do. I appreciate every kind gesture to help me get through this and the upcoming surgery.