Thank you so much for doing that @jamienolson. It is something incredibally important and I am grateful to know Mayo will be working to address this. To limit this policy to 2 areas makes no sense as these patients still need to maneuver the rest of the facility. If I’m on an elevator and someone heavily scented gets on, I try my best to get off.
I am very reactive right now and learned about a week ago that I am now allergic to aspirin!! I have stopped all drugs but had a throbbing headache for a few days. I finally broke down and decided to try 2 regular aspirin. Within 15 minute or so, I was pretty much gasping for air, trying to breathe. It was 2 in the morning and my choices were to either go to an ER or give myself a Nebulizer treatment at home. I chose the Nebulizer at home and needed to do it twice. Since then, I am still trying to regain my breath and am uber sensitive to things I was not reactive to before, like ice packs in my freezer. It’s not just perfume, its chemicals as well. My system is so worn down from the over prescribing of pharmaceuticals that I simply have no immunity left.
My doctor was not really hearing me but I finally said the above to her very directly. I told her about the aspirin and let her know the severe reaction I had. Also, she had suggested yet ANOTHER biologic drug, which could literally kill me. The last drug I was on for only a month (Arava) caused me to lose about 50% of the use of my hands. It is no exaggeration to state another drug could kill me and I am hopeful she got the message loud and clear.
She has sort of been ignoring me when I have shared what I have been through. I told her that as a Dr prescribing these very dangerous drugs, it’s incredibally important for her to not only listen, but notate. She actually did not record the issue with my hands, even though she saw me before the drug and after, clearly seeing my fingers have dropped off on both hands. I of course pointed it out to her as well but she didn’t feel it important to note. I told her it’s not only important to me, but for research as well and others who come after me. I’m still barely able to eat after the Arava as it is a drug that remains in your system a long time and even though it’s been over a month, I still experience its side effects.
As for the person I spoke to, they were not happy and acted as if I had a problem. Before I had spoken, I was sitting in my wheelchair at the front desk, awaiting someone to push me over. When they walked up, I immediately backed up. They then moved to the other side of the desk and close to me again, and I moved yet again. I could see they were aware of my movement and thought it a good opportunity to speak up, but they didn’t take it well. The bellman would get their elevator to go down to the subway and even though they had left, their scent lingered. Had that been today, I’d be gagging and for me, there’s no such thing as a rescue inhaler. The Nebulizer treatments caused my lungs to feel on fire and they have still not calmed completely down. It’s so very important to address and I am soooo happy Mayo is listening!!!