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What I Want My Legislators to Know About My MS

Blog Summary

I was diagnosed with multiple sclerosis in October 2010. I was 27 and had a daughter who just started kindergarten. I was working full-time as a nurse in a busy local practice. I had just started dating the man who would later become my husband. As time went on after diagnosis, my family and I moved forward, and transparently fought our battle, sharing with everyone we came in contact with what life with multiple sclerosis was like for us.   Eight years after diagnosis, I started realizing that the majority of public policy discussed was having a direct impact on my life. I started to focus in on how vital talking with our legislators is and what I wanted my legislators to know specifically about my life with MS...

Advocating... Virtually

Blog Summary

I was invited to join the National MS Society for California State Action Day at the end of March in Sacramento. We would be meeting face to face with our representatives to share our stories of living with multiple sclerosis. I was thrilled! I was going to leave late Sunday night and be back late Monday night after spending the day in Sacramento for a quick overnight trip. My husband would get the kids to and from school. My parents would watch them while he was at work. I was going to have to figure out how to do a Lyft/Uber ride from the airport to the hotel. It was all worked out, and I was so excited!...

The Missing MS Face

Blog Summary

Last month, we celebrated World MS Day on May 30.   We stand "connected" with our MS family throughout the world by raising awareness for this disease. But this month, America is hurting and managing the impact racism is having on our country...

“Drawing” in the Rain

Blog Summary

Now that I’m retired, there are so many things I want to do. Among them is learning how to draw. I am fascinated by the ability to create portraits, landscapes, bowls of fruit and so much more from a humble charcoal pencil, and I’ve always wanted to learn how to do that. I signed up for a drawing class, put on by a local recreation department. It was raining ferociously on that first day as I got out of my car and approached the building in my walker. It was pretty obvious from a distance that the main entrance had stairs in the front, and I assumed there was another, accessible entrance. But as I got closer, I realized that the stairs were the only way into the building. The door was also closed, and there was no sign or anything else saying what to do if you had questions or problems...

MS Allies

Blog Summary

“What can I do to help” is a phrase I often hear. Usually, the offer of help comes right after I tell someone that I live with MS, or sometimes comes after the person has learned of a close friend or family member living with MS and reach out to me to ask what steps to take next.   I have an answer...

Long-Term Care & Multiple Sclerosis

Blog Summary

Part of my duties as a financial advisor is to provide a comprehensive strategy for clients preparing to transition into retirement. I create a financial plan that not only considers investment recommendations, but also how our clients can afford healthcare during retirement. The fact that I live with multiple sclerosis makes me particularly empathetic towards the challenges associated with the accessibility of healthcare. Since my diagnosis in 2012, I have been denied health insurance, life insurance, and fully understand that I am not qualified to purchase long-term care insurance due to my MS.   The traditional conversation regarding “healthcare” is not broad enough to include the rising cost of custodial care. How does an MS patient manage to pay for traditional medical care and assistance conducting ordinary daily activities around the home? Furthermore, how can someone living with a pre-existing condition like multiple sclerosis gain access to insurance that helps pay for fundamental functional abilities like bathing, eating, and getting in and out of a bed or chair?...

Faking It

Blog Summary

Ugh.   I’m doing it again...

The Long Walk to the Coffee Shop

Blog Summary

My rollator walker is my freedom. There’s no question about that. It allows me to observe the world while I’m walking instead of constantly looking down to avoid pebbles or cracks that might (and do) send me reeling. Liberating as it is, the rollator has its drawbacks. It’s big and bulky, and it’s forever a challenge to figure out where to stow the dang thing when I’m at a concert or in a restaurant. And when I’m walking down the sidewalk, I’m often either parting crowds or zig-zagging to get out of people’s way...

Self-Advocacy

Blog Summary

Are you kidding me? Another $749 out-of-pocket… just for lab tests? It was another unexpected medical bill, even more irritating than usual because I had called the lab before the test was done to clarify the cost. The lab had assured me I would pay no more than $200, even if my insurance company failed to pick up the tab...

Don't Shed on Me!

Blog Summary

The students in my disability law class were expecting to have a guest speaker that evening. But they were surprised and delighted when not only did two guests enter the classroom, one of them was of the canine persuasion.   I believe the best way to teach the law is for students to see it in action. And that evening, they learned about an organization called “Canine Companions for Independence,” a nonprofit group that trains dogs to assist people with disabilities. As the students observed, Eliza the service dog, was able to help her owner, a wheelchair user, in a variety of ways. Among other things, she retrieved coins and other small objects, opened the door and even pulled her owner’s wheelchair...