Hi, I’m Amy.
I live in Raleigh, NC , USA with my husband and our two teenage sons. I also live with unwelcome interlopers in my body.
I was diagnosed with multiple sclerosis on March 15, 2002. Beware the Ides of March indeed. Like most people with MS, I started out with Relapsing-Remitting MS (RRMS), where symptoms would flare up but then go away. As my disease progressed, symptoms would flare up but not completely go away. I now have Secondary Progressive MS (SPMS), and some of my symptoms never go away.
On August 5, 2021, I was diagnosed with sebopsoriasis. Yup, chronic illness does not follow the “one condition per person” rule. I am part of a smaller but still considerable part of the population that has multiple chronic conditions. I’m also in the unique position of living with a long-term chronic disease and being a newbie for another. I’m starting at the clueless place myself, but I’m not going to stay there. It’s going to be a challenging journey – and one I don’t wish I had to take – but we have to play with the cards dealt to us.
Right after my MS diagnosis, I walked 9K in an MS fundraiser. My mobility deteriorated. I used a cane, then a walker, and now a wheelchair.
When I was diagnosed with MS, I was working in IT for a research institute. MS didn’t interfere with my work life at first. I was promoted to management and obtained three professional certifications. But as the disease progressed, it interfered more with my ability to do my job. While I was working, it was easy to introduce myself as an IT manager. When I went on permanent disability, I was overwhelmed trying to figure out my new identity. It took time, but I’m now settled into my new skin.
My Philosophy
We are living in a clueless world, but there are ways we can make it better.
- Advocating provides an opportunity to make sure change makers see us, not ignore us. If we’re not willing to advocate for ourselves, how can we expect others to do it? We are also advocating on a personal level to make sure our doctors know how our conditions impact our lives.
- Educating ourselves is a necessary evil. Having a chronic condition doesn’t come with a medical degree, so we have to learn about our conditions and about how they affect our bodies.
- Educating others is tiring but essential. Clueless people make assumptions about chronic conditions that are wrong and can be dangerous. We also have to teach people how to treat people with chronic conditions. Kindness and respect are scarce these days, and those of us with chronic conditions are even bigger targets for contempt.
- Support is essential for those of us with chronic illnesses, since our parts of the world can be lonely and ignorant. Speaking up is a chance to tear down cobwebs of cluelessness and isolation. We are not alone. We can share experiences and information to help others…and ourselves.
Amy the Advocate
As my sister says, I do not suffer fools lightly. During my IT career, I developed and delivered countless training classes. That teaching has now evolved into educating others and myself about chronic illness on both a macro and micro level. Advocacy can include large efforts like lobbying for needed legislation. It also includes making sure you are advocating for yourself with your medical team to make sure you’re getting the best possible care.
I am an Ambassador for the Chronic Disease Coalition, a patients’ rights advocacy organization for people with chronic diseases. I am also an #MSActivist for the National Multiple Sclerosis Society, advocating for change, raising awareness, and staying informed.
When I first considered advocacy, I worried that it would be a daunting time and energy commitment. It doesn’t have to be. Sure, you can be that person who sets up meetings with your elected officials to discuss policy changes. You can also be that person who joins a Twitter campaign to personalize a tweet that you send to elected officials. You define your role. You decide what’s in your comfort zone.
Amy the Blogger
I started blogging to keep friends and family in the loop on how I was doing. It is exhausting to answer the same questions over and over. When my husband Tim and I became parents, I shifted my blog’s focus to discuss parenting while living with MS. Now that our boys are old enough to manage their own social media identities, I’ve mostly backed off about talking about being a Mom.
That’s how Reinvent Chronic came to be. My focus is now on reinventing ourselves – and our world – in the face of chronic illness. We are more than somebody’s partner, or somebody’s child, or somebody’s parent. We are far more than chronic illness statistics.
Amy the Educator
Having a chronic illness is a wake-up call, a true indicator of ignorance. I thought I knew how my body worked and what I needed to do to keep it working. MS was the universe laughing at my foolishness and putting me on a new path. Time to expand my education.
When it comes to chronic illnesses, people are clueless.
I quickly realized that – whether I liked it or not – I had to educate people about MS and chronic illness. Why? Because people are clueless. The newly diagnosed have no idea what they’re in for once they finally can put a name to what’s troubling them. People living with chronic illness do not reach a point where they’ve learned everything they can or need to know about their conditions. Those without chronic illness cannot walk a mile in our shoes and just don’t understand the difference between knowing someone with a chronic illness and knowing what it’s like to live with a chronic illness.
Amy the Supporter (And Supported)
It’s not unusual to feel lost and isolated because there are so many more questions than answers. I’m far too familiar with the loneliness of chronic illness, since agoraphobia left me isolated. The fear, the anxiety, the frustration…I get it.
I am fiercely loyal. There are times when someone needs a shoulder to lean on, and I’m there. Other times, I need a shoulder to cry on, and I’ll look for one. It’s a 2-way street.
And now for something completely random
Some more tidbits about me:
- I got my Bachelor’s degree at the University of Virginia and an MBA from Wake Forest University.
- I have been a sports fan since I was a kid.
- I’ll watch any sports, but my favorite is college basketball.
- My favorite teams are UVA (of course), Baltimore Orioles, Carolina Hurricanes, Carolina Panthers, and any NBA team with a UVA player on the roster.
- I’m not a fair-weather fan. Considering the Orioles my favorite baseball team is all the proof you need.
- I once drew 3 cards to a straight flush in a poker game.
- I used to write snarky reality TV show episode recaps.
- Some people think I quote Monty Python too often. Go away or I shall taunt you a second time.
- I have a book blog and bookstagram where I post reviews and general book information. I enjoy reading Advanced Review Copies of books (ARCs) and garner publicity for those I like.
I’m looking forward to getting to know you better as we navigate through our lives..
