Edited to add:
Friends, 2019 is a challenging year. In addition to my disabilities/chronic illness issues, I’ve developed a heart issue. I’m unable to work at all, and living solely on SSDI. I’ve surgery just before Christmas to correct the heart problem. Wish me luck!
Hello friends! I’m Tami 🙂 I’ve struggled with disabilities and chronic degenerative illness most of my life. At the age of of 24 I was awarded social security disability. This translates to: “permanently and totally disabled and unable to perform substantial gainful activity. “
It was quite a blow. I was mid health crisis and it took several years to work my way out of that and to mourn the future I thought I had in front of me. Thankfully, my naturally optimistic attitude took over eventually and I built up a support system that told me I could and I should try for the things I wanted in life.
So I did. It’s been rough with loads of ups and downs. I earned a BA in English lit, but it took nearly ten years with all the breaks and time off. But. I. Did. It! If I could do that? What else could I do?
Took a few years, but I managed to buy a house on my own so I could gain independence as an adult and autonomy. I managed this on SSDI and a part time job netting under $1,500 a month. Amazing things can happen if you believe, I tell you!
Unfortunately, it seems an impossible challenge to find a job where I can make a living wage (or “gainful activity”) while being able to call out sick as often as I sadly need to even with a BA. I always say I get three good nonconsecutive months a year. After my health began to compromise my ability to do my part time job I had to quit and that loss of community was painful.
Forced to come up with an income I could make from home independent of my health I discovered pet sitting! I watch small dogs in my home as I can and as my clients need. I live on under 25k a year – including my SSDI – and use all my creative energy to find ways to hack my life so I’m living a 50k life on 25k. I’m super involved in the local FIRE community and an old school Mustachian. I keep expenses super low, travel hack, and bonus churn.
I am so grateful for the life saving net of SSDI and Medicare, but it’s also become a trap for me. Even if I wanted to find better work, it would have to be extraordinarily better and I would have to be able to miss all the days I needed without losing my job or guess what? No medical care. That means that as long as I am on Medicare/SSDI I can never, ever make more than $25k annually. While I have managed to do amazing things with that level of income it means I never get to try all the things I’d love to try to do in my life for fear of losing medical care.
I had 51 doctor appointments in 2018. 51! And that is not even including days I just had blood draws. That’s a huge time commitment and a lot of money for medical care and despite the coverage I have I still paid 20% of my income out of pocket to medical expenses.
So here is what I am out to do. I’m here to share my life, and show people what living with chronic illness and disabilities is like – especially when they are invisible. No one looks at me and thinks I am sick. That’s a whole ‘nother kettle of fish there. No one knows what it is like to be us, because we don’t share. I didn’t share due to shame and fear of judgement.
I’m over that now. My optimistic side says I can help the audience who needs to hear what I have to say. Trolls be trolls, y’all.
Ultimately, the goal is to share my story and empower other people struggling with disabilities and chronic illness.
At this time, I’m trapped. I am unable to out earn my medical costs based on the level of work I am capable of doing. If universal healthcare were to become a thing, I could operate independent of any of these programs. Do the work I’m able to do, as I’m able to do it.
I want freedom and independence and the ability to try. Maybe I’ll fail miserably. Maybe my health won’t allow it, but I want to be able to try to reach for my dreams without fear of losing my healthcare. Supporting this blog can make that happen for me. I appreciate every single one of you. Every view, every share, and every comment uplifts my heart and supports my journey.
I’m here. So are you. How can I help?
You can reach me directly here (though a comment on a post will likely receive a quicker response): email@example.com
I may not respond quickly, but I will eventually.
I absolutely love getting mail! Nothing brightens a day like an unexpected card or package.
You can write me here:
4227 South Meridian
Puyallup, WA 98373
Guys. We can do this. We can lift each other up, be vulnerable and share our experiences and our successes and learn from our failures. This world is a community, let’s build up a supportive and engaged world and community together.
Should you be so inspired or motivated, and want to contribute directly to my future this is my ABLE account. An ABLE account is an investment account for people with disabilities that allows withdrawals only for disability related expenses. For the first time ever, people with disabilities are allowed to invest in their future without costing their present! It’s amazing!