The Difficulty of Disability and Medicare

The Difficulty of Disability and Medicare

Most people think it is so easy to be on disability and have Medicare. Let me tell you, that is not true. It is not a dream. It is one of the most difficult things I have ever done in my life. Working was my passion. It motivated me to get up every day, it powered my brain, I love knowledge. Having quality healthcare was a major benefit as well. When I no longer had a choice and my health failed me, my body decided to attack itself, I had to make the horrid decision to go out on disability. A 33-month process of doctor appointment after doctor appointment. Appeal after appeal. Then the hearing date. The waiting periods. The anxiety and stress only induced my symptoms and pain. Once approved, I was immediately approved for Medicare (the 2-year waiting period was complete, it was over 2 years before I was even approved). During that time, I was blessed to have my ex-spouses’ insurance as a primary and Medicare as a secondary. My infusions were covered, most medical bills were covered at decent rates.

Then once the divorce was finalized, last year, it came down to Medicare and tough decisions. I had to drop my supplemental plan since most of my specialists did not accept Medicare supplemental plans. Regular Medicare does not cover much at all. Luckily, Rituxan, is one infusion that I was blessed to qualify for at zero cost even with Medicare, however, I still have a 20% copay for ALL medical bills. Last year alone my medical bills exceeded $15,000. That is a good chunk of what I bring in on disability, don’t ask how I made it work. I will just say, thanks to many blessings.



I am savvy with exhausting efforts to save money and reducing costs, now it is time to do just that. I began to investigate supplemental plans again. Since July of 2019 so much has changed. Now there are literally ONLY 2 HMO plans in my area that I qualify for and ZERO PPO plans. I must weigh the benefits of the supplemental plans and the care of my current doctors. I have decided at this point, it is more beneficial to change doctors. This decision is so difficult. When you are on disability, you are subjected to medical reviews. New doctors do not know you, they do not know your exact history, only what is written on your prior doctor notes, some of which are not accurate or very vague.

I am trusty God on this decision and with having Ed’s help, I believe it will work out. This month I will complete my Rituxan infusions as I work intensely to make appointments as soon as possible with a new rheumatologist, a new ENT, I will pay out of pocket for my psychologist and psychiatrist (I have been with them since 2013). This is going to be a process.


I have a call into UVA Rheumatology in Charlottesville, VA, their appointments are 12-18 months out. I also have a call into Mary Washington Rheumatology, and they are waiting on my records and may not be able to see me until April. In the meantime, I must have a backup plan.

The benefits of the new supplemental plan are vision which includes frames and lenses, dental coverage, over the counter item allowances, decent copays, and a few other options.

I am confident I will make it through!

Healthcare and disability are a beast to handle. The stress and pressure and pain are always on my mind and in my body. It is hard to deal with and the government does not make it easy. I am grateful and thankful that I have these benefits but believe me, they do come at a cost, whether it be monetary or mental.

Please never ever judge someone on disability, you do not know what they are silently going through. You do not know the amount or lack thereof their benefits, their condition, the help or lack of help they receive.

You never know when you will be in this position.

God willing, one day, I pray to go back to some type of work. Until then, one day at a time. I will be thankful! I will praise God, walk-in grace, and know that this is all for a reason. I am still blessed.

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As Always, Thanks For Reading.

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