What’s Ana? (Who? Where?) Street Conversation #5

Ana. Ana fits into the same category as Aunt Flo; the frequent but unappreciated guest with awful timing (apologies to any men who aren’t familiar with the term). Except Ana is less predictable, less frequent (usually) and more dramatic than Aunt Flo. Fortunately, when Ana comes to visit almost every day, the drama is spread out. Her explosive temper is somewhat tempered… Even so, if her buddies Phil and Axis show up to crash the party, it can get out of hand surprisingly fast.

It does seem that anaphylaxis is almost a person or destination in my life. I’m ‘halfway to ana’ a LOT. At times, I have had anaphylaxis up to four times a day (I couldn’t eat without epi). Right now it’s an average of about once a day (but improving). I should probably explain a bit more though.

Anaphylaxis looks very little like what the cartoons show…. Ana can be extraordinarily dramatic, but it can be a slower process as well. Those who die from anaphylaxis, half of them are due to edema (swelling enough that the airways become obstructed). The other half are due to shock- (an inability to move oxygen around the body sufficiently). Ana rarely kills, but the potential is there whenever she comes. It is extremely frightening (it’s supposed to be- if you don’t get away from whatever is setting it off, you could die. Fight or flight keeps us alive…). If I have it once a month it can be very fast for me, and makes me feel utterly horrible for days. When I have it every day, it’s not nearly as bad. I’ve taken epi in front of doctors without them knowing… ‘I’m sorry to interrupt, but I thought I’d mention I just took some epi, if it doesn’t help I may have to lie down”. I think it may be that because my nutrition is so bad, and my mast cells are constantly churning out mediators (chemical signals like histamine), I can’t re-supply them fast enough. I take epinephrine before I am showing a ton of symptoms. I know which way it will probably go, taking it as early as possible makes the effects much less long-lasting.

My Ana usually fits into two patterns, ‘Riding the Ana Wave’ and ‘Wham Bam Slam.’ (Can u tell I have small children…?). The ana wave is a cumulative reaction, where triggers overlap other triggers, and my body gets gradually worse and worse until the bucket tips over. Wham Bam is the kind where the time from ‘oh crap’ to ‘black spots’ is less than a minute. I sometimes refer to them as Mastie Ana and IgE Ana, but I have no validation of those names other than matching likely scenarios to what my body feels like.

I often get asked the follow up question of “How do you know you’re in Ana?”. The best answer I’ve come up with is a touch snarky, mostly only suitable for yahoos who’ve put a dismissive tone to their question (and frankly, it’s hard to ask that question without sounding dismissive): ‘How do you know you’re cold?’. I could put it into words, just as anyone can with describing any body state. My doctor and I made a ‘line’ in sand where I had to take epi, but that’s no longer what I go on. I’ve had Ana visit often enough now that I just know how bad it will be. Describing symptoms is so subjective- the exact same symptom can be called ‘irregular heartbeat’ ‘dysrhythmia’ ‘palpitations’ or ‘heart flutters’; each one laden with their own connotations and judgements. Doctors are unanimous on this though – if in doubt, take the epi. It’s much more dangerous to delay epinephrine than to take it when you didn’t need it. There are NO contraindications to epinephrine (a lot of paramedics and docs are going on 20 year old recommendations). I’ve never regretted taking it, but I have regretted NOT taking it several times.

So Ana is an uninvited guest, and a high-maintenance one at that. We’ve managed to come to a type of arrangement, but I’d much rather she just left altogether. This eviction process is really dragging on.