Project Upswing -- Living and Learning Life with MCS

I was in a motorcycle accident sustaining injury to fingers, back, neck. Healed superficial wounds and regained range of motion. Got super sick with flu in bed for a month! Developed chronic pain and fatigue. Discovered I had an undiagnosed mild-moderate brain injury and MS lesions where the helmet hit my neck in the accident. Developed chemical sensitivity 4 years after accident. Had no idea of how i got this!

I developed an inability to tolerate fragrance, essential oils, every cleaning product I had in the house. I started examining everything I was exposed to, inhaled, ingested, and put on my skin. I found a way to deduce what I was having problems with through documenting safe and unsafe products and their ingredients.

I discovered I am especially sensitive to a class of chemicals called "terpenes." In a recent conversation with an advocate who is trying to get weed legalized, I learned that marijuana has HIGH concentrations of terpenes. I thought that was interesting because I had tried weed 3 times to see if it would help any of my symptoms and while it did, I experienced other symptoms I didn't enjoy and aspects that made my health worse so I ceased. (I mean, don't get me wrong; i didn't mind the high, but I didnt like how tired i was or feeling dizzy.)

I went back through calendar and journal entries and when I started wearing a mask and discovered the sensitivity happened shortly after I had smoked weed. I spoke with another friend who smokes weed regularly and he said, "do you think it was the cause or the catalyst?" Because i know a lot of people who smoke weed and are not chemically sensitive, I believe it was the catalyst for it -- that some of my pre-existing conditions made me vulnerable to developing the sensitivity.

Interestingly, my mother is also chemically sensitive. My first husband was too. So there could be other environmental causes because I spent so many years with them -- or genetic reasons Im not aware of.

A lot of years living with this now, I've developed a lot of great living strategies I enjoy sharing with others. I have done a lot of public speaking and advocating on MCS and am organizing local community now.

I have advocated hard for myself, been successful at getting things to work out several times. Settled out of court with a major hotel chain recovering damages due to a botched accommodation. I also reported a civil rights violation to Office of Civil Rights against Noran Neurology for having a fragrance free policy and dispensing fragranced products to their patience and staff that came back favorable. I'm able to get reasonable accommodations at a lot of places where I'd originally been denied service, which has been hard work, but has paid off. I seem to have come up with a way to inquire about other's obstacles to accommodating which has been mostly successful. (Not all the time. Some people/businesses just need to be reported to the Department of Human Rights.) I've learned how to file discrimination charges on my own and to work with legal advocates and attorneys to seek justice.

I have visions of creating protected community space for people with sensitivities (chemically safe, low sounds, calm environment, lighting choices, etc) and working on housing and travel solutions. Once COVID is no longer a threat, in-person protected meetings will resume in Minneapolis.

If you are in Minnesota (MN), please join me and others at Sensitive Life on Facebook.
https://www.facebook.com/groups/sensitivelife

Otherwise, I highly recommend this FB group:
https://www.facebook.com/groups/1683762111880031