Ironically yesterday when I was extolling the wonders of Xolair I didn't know what today held.
Last night I had two mild bouts of asthma, both after eating a few corn tortilla chips by Frito Lay. After realizing what was causing the wheezing I had to scan the back of the bag for likely culprits. It seems that they fry the chips in either sunflower seed oil or canola oil. In the distant past I've reacted to sunflower seed oil so I'm guessing that's it. Or perhaps the canola oil is a new allergy for me.
It starts with tingling in the mouth after eating an offending food, followed by feeling my airways get very tight. It happens in a matter of seconds. I spit out the food, medicate and move on.
So today when I got up and went to church I knew I'd been reacting lately to a few different things, like the chips, random people's colognes and cleaning products, but the reactions were relatively mild and I always get away from the trigger and medicate. And then today happened.
Jim and I managed to find the key and get into the church office to start counting the offering. Our church has three different services. When I arrived the offering for two of the services had already been collected and the people asked to fill in for this weekend weren't there. Yeah, we went into the office to make sure the counters were working and they weren't even there.
Back in August the pastor tasked Jim with running the offering counting, telling him to take charge, come up with the official method we would use and make sure everyone knew it. His decision. It's been chaos, sometimes devolving into the cranky cluster-you-know-what.
It's been chaos, but Jim finally came up with an effective way to do it, and I've joined him on the team pitching in when the counters do not show up, like today. Today was really not a big deal because immediately after church we were having a meeting of the team of people counting so that Jim could train everyone to do it to his standards. We swung into action, I did counting and organizing for the deposit and Jim started recording the transactions into the computer. We hadn't been doing it long when the counter team that had asked to trade weekends and count this Sunday finally showed up.
As more people started to arrive for the meeting one newer lady to the team I did not know showed up. As she walked through the door and past where I sat at the counting desk I just about fell over. She reeked of some very nasty cheap cologne that made my vocal cords slam shut. I went into my crazy rescue breathing method I was taught at Johns Hopkins to keep my vocal cords opening when I was exposed to something. I got up and went across the room, pawing through my purse for my portable nebulizer.
A couple folks started asking me if I was alright, I had to shake my head no and leave the room, still rummaging in my bag for the neb. Made it all the way down to the cool church basement, got out my neb while still doing the rescue breathing. By this point it was close, my lips, mouth and windpipe were tingling, my airways closed to a tiny hole and I was wheezing like crazy. Tossed in my pills, managed to fill the neb with Xopenex and start inhaling. Took three treatments to get any relief. I had out my epipen ready to use if it got any worse.
By that time some of the folks that know me that were in the basement saw I was struggling and almost made me start crying with their care and kindness, getting me a chair to sit in, fetching water, offering to drive me either to the ER or home. But the medicines started working some by that point and I thanked them and drove the five minutes home, knowing that once the allergy meds took full effect I needed to be somewhere comfortable and horizontal. I texted Jim what was going on because he'd been surrounded by people and talking, I wasn't sure he knew what happened.
One of the terrible tolls the attacks take on me is that when the attack is bad the adrenaline that floods my body sends me into a panic attack. If I'm home and it's happening I deal. I take my Ativan, lay down somewhere I feel safe (like under my desk) and keep telling myself that this too will pass, that's it's just my body's way of reacting. The panic attack happened while I was still at church, still wheezing and struggling to breath. I used my nebulizer and cried silly tears while wishing I was dead and feeling like the end of the world was here. Those asthma induced panic attacks are a horrible thing.
Once home the most I could do was lay on the sofa and watch television while oozing tears and whispering to myself that it was alright, like I'm some toddler. Four hours horizontal.
When Jim got home he was sympathetic, bringing me lunch and something to drink, watching television with me. But as the afternoon waxed on he reminded me again we had tickets to see the DC Balalaika Orchestra that afternoon. I didn't want to go, feeling so crummy I just wanted to do what I need to do after a bad attack, lay down and rest.
He insisted we go, that it was going to be fun, and I'd be in a safe place. We went and it was a pretty big mistake. Never ever ever ever again will I let him persuade me to do anything in the aftermath of a serious asthma bout.
We got to the theater and because I was fearful of having another attack I asked the box office attendant if I could possibly sit in the balcony, well off to the side, away from everyone else just so I wouldn't be exposed to lots of people and their possible colognes. Yes, this is one of those very rare occasions I asked for my ADA accommodations. Of course, said the box office guy, the balcony is closed because they have a film crew up there, but all I had to due was tell the usher the same thing I told him and I could have that accommodated, be seated away from anyone up in the closed balcony.
I've done this before at other venues when I'm having an asthmatic week. The Kennedy Center has allowed me special seating well away from the bulk of the crowd. I've had isolated balcony seating at the Castleton festival and other classical music venues we attend. Most places are willing to work with you if you have an ADA request if they can.
This time I got to the usher, repeated my request only to be told a firm 'no', that no one would be seated in the balcony for any reason, even an ADA accommodation, We went into the theater and sat down. It was a milder version of that morning, but as soon as we were seated I started wheezing hard again. Ended up moved all the way down almost to the stage away from some of the crowd and it helped some. But by that time the panic attack was back as I used my portable nebulizer again and threw in more Ativan. I spent the first half of the performance silently weeping in the grips of the panic attack as Russian music filled the large restored theater.
Afterward, as we were leaving a lady stopped me and wanted to know if I knew where the elevator to the street level was, gesturing to an older lady barely able to stand, hanging onto the handle of her Zimmer frame (walker). They couldn't figure out how to get her out of there. While this was going on the clueless ushers were cleaning the place all around us.
Sadly I think this is going to be my first and last visit to this venue, the State Theater in Culpeper, Virginia. Clearly the staff has no idea or desire to help out anyone needing special assistance I'd say from my observations today. From looking around I see no areas you could possibly put a wheelchair and the many steps inside the auditorium would be a challenge for anyone with a walker. I'm thinking a complaint to the office that handles ADA violations might be in order tomorrow morning.
I guess I'm going to have to start being a real bitch and standing up for my own needs in the face of indifference. that was one of the things they were working with me about at therapy in the asthma research part of Johns Hopkins. I carried out of my old church the inability to stand up for myself, just smile and put the wants of others first.
Too bad because I would have loved to have gone to this venue more often. Many years ago when we first built our house here the only job I could find that didn't involve driving into DC and left me stay home with my children during the day was working as one of the managers of the local movie theater. When Jim got home from his day gig with the military at one of the listening posts here I'd hand the children off to him and go to work.
The State Theater was part of the chain I worked for. I worked in the sister theater across town, a two screen theater built in a shopping center in the mid70s that lacked all the charm and grace of the State, which dated back to vaudeville days. During my nights at my theater I would occasionally get a call from the manager of the State that they didn't have a projectionist or change, or popcorn cups or whatever and be pressed into duty skeedaddling across town to help out.
The State is haunted and I've wondered since it was remodeled and opened as a live music venue if any of the people there now have had experiences like many of us did back in the days it was a movie house.. Just about everyone that worked the old State has seen old Mr. Pitt who built the place standing silently up in the balcony and seen his image slowly fade away.
The projection booth was also a paranormal hot spot. It was not unusual to go up into the projection booth, set out your tools, your splicer, your tape, lock the door and go downstairs to help main the concession stand and return to the booth a half hour later to find your things rearranged. Not in disarray, but neatly laid out in way you did not leave them. It's unnerving when it's a midnight showing and you know you're the only person in the place with a key to that door.