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How can I feel comfortable about my future? How will I take care of myself?

How does someone, married or not, feel confident about their financial future if they can’t work? Are people worried their insurance will not last forever as it currently is?

How will you be able to take care of yourself and get things done that need to be done. How will you retire safely if/when you can’t work due to complications to AS?

  1. I became disabled in 2015 because I had 10 brain surgeries in less than 4 years, all of which failed, because of a rare disease. I actually now know of 7 rare diseases that I have. It seems like every year I have something new that pops up, and AS is included in that. I have been so busy paying attention to everything else that the AS advanced quite a bit before being diagnosed. I ended up being diagnosed because my breathing became arrested and I was experiencing severe CRPS in both hands, and MRI images revealed fusing of my vertebrae.

    It is totally valid to be concerned about living as a disabled person. I'm single and live alone. It's a challenge on so many levels. I live in the 5th largest city in the U.S., and I at different times in my life I've lived in cities of 500,000 people, 70,000 people and 300 people. I recommend sticking closer to larger cities just for access to transportation, housing, doctors and equipment. Navigating insurance in the U.S. is a particularly difficult and expensive endeavor. I belong to a small national disability network and I actually have a random person every day ask me for help with resources, without them knowing they are asking the correct person. There aren't many states that look out for the people who need the most assistance and care. Not everyone has a person or family to whom they can turn if they need long-term help and care.

    1. Yes- this is EXACTLY what I was talking about. You hit the nail right on the head. First off- my heart goes out to you!!! This is such a scary subject. Your suggestions are truly good suggestions. I thank you very much for your response. I hope we hear more from others on this subject too. Thank you!!!

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