Crisis mode continues -
Crisis mode continues, as does my absence from social media. Everyone wants to know if my MCAS is better after the fusion. I was hoping it might be, because even though I still react to everything, I haven’t needed epi in over a month. That’s at least partly because I’m on steroids and also because I rarely go out, especially on consecutive days. This gives my mast cells a chance to quiet down between outings. As it turns out, if I go out a few days in a row I’m right back to where I was.
I was on my way to see the spinal surgeon here because my back scar has been puffing up and apparently there are pockets of fluid under it - could be a bad sign. Someone was smoking 5 ft from me at the station, and I had to ask someone else using my phone speech program (I lose my voice with reactions) to ask the person to move. The damage had already been done though. -
I got on the train and a perfume that was particularly bad hit my nose. I thought I was going to make it to where I had to get off to transfer. A few minutes before, I started feeling out of it and then started having breathing issues. When I couldn’t find my radial pulse (low blood pressure, <90) I used the first epi. I was feeling better and got off to transfer. As I was waiting symptoms started coming back and I used a second. I got on the last train and I could tell I was reacting to something on that train. -
The third epi helped but was taking its time. I still was having breathing trouble, so I asked the driver to call for an ambulance and got off the train. By the time the medics got there I was finally coming out for good. I still wasn’t completely better, so I let them take me to UCH. I had the ER let the spinal center know I wasn’t going to make it (the ER and spine center are very close), so that crisis continues, plus I’m dealing with an ER visit now. Still working on aide help too. Having a disability is a full-time job and then some.