This is a summary that I wrote out a day or two after I almost died the other night. Everyone knows about the throat closing up bit. But there is so much more to it. The summary is a little incoherent maybe. But the entire process of dying is a little incoherent. So you’ll excuse me that, I’m sure.

“The throat closing and chest tightening and sudden onset of headache because you aren’t getting enough oxygen and you try to swallow but there is something in your throat that feels like a noodle. There is no noodle in your throat. There is only throat in your throat. But you can’t swallow past the noodle. And holy fuck maybe if the headache would let up maybe you could think straight but the headache is only getting worse. And your chest is being squeezed by Andre the Giant as tight as he can squeeze. And the flaming sword piercing through your chest hitting your spin doesn’t help anything. The paranoia feels well placed though. You’re actively dying. The paranoia hit before the rest. It always knew you were dying. The noodle is getting bigger. Your throat is getting smaller. The sword is getting hotter. Andre is hugging tighter.”

I had my first double epi event that night. I always start with 6-8 benadryl. Epi pens are expensive and thus hard to come by. I know this. But about an hour after I took the meds, the lack of oxygen headache was setting in, and the next step is turning blue, so I went ahead and injected the first epi. It sort of helped and the noddle lessened. But then is came right back so I used the second one on the ride to the hospital. You don’t actually need to go to the hospital with just one epi. But a 2 epi event can lead to cardiac arrest so as soon as it became clear the one wasn’t going to cut it, we headed out.

Anyway, they pumped me full of steroids (and sent me home with more) and monitored my heart for a few hours. But the epi pens did their job and my heart was fine, so I was released at the end of the 4 hour monitoring period.

Here is the fun part.

Guess who has met their epi-pen quota for the year. Apparently, due to the cost of epi-pens (A generic brand 2 pack is over 600$ because in the land of the free pharmaceutical companies can charge what they want. These same 2-packs are 32$ before insurance in the UK, for the record), my medical insurance will only cover 2 near-death experiences a year. The third is life insurance’s problem. I do have a full set on hand. I’ve only almost died once this year. But if it happens a second and then a third time? Guess I die for real. Btw. This isn’t the 2020 quota. It’s a rolling 12. I can’t get another refill until June 2021. Also, this is why I take a half bottle of Benadryl before I even think about the epi. But sadly, allergies like this get worse with each exposure. My throat will close more and more with each exposure and get harder to reopen. And I can’t just avoid the thing since it’s in everything and not listed on the label. Obviously I do my best but… Anyway, when I say capitalism kills this is what I mean.

So that’s where things stand in mid July of 2020.

Ok, y’all.  I’m going to put this out there because apparently my husband, who’s been living with me and my allergies for 17 years now, didn’t know this.  Hell, even I didn’t realize some of this.  So I’m going to do my best to make this public knowledge.

First, anaphylactic shock can be progressive.  It gets worse with each exposure to the allergen in question.  This is so important for you to know.  Frequently, as with me, your throat doesn’t close and kill you the first time you are exposed to something.  It’s not uncommon to not need an Epipen (or even Benadryl) the first time someone is exposed to an allergen, even if they are indeed suffering some symptoms of anaphylactic shock.

But what are the other symptoms?  The “lesser” symptoms?  Let’s look at them.

• skin reactions such as hives, flushed skin, or paleness
• suddenly feeling too warm
• feeling like you have a lump in your throat or difficulty swallowing
• nausea, vomiting, or diarrhea
• abdominal pain
• a weak and rapid pulse
• runny nose and sneezing
• swollen tongue or lips
• wheezing or difficulty breathing
• a sense that something is wrong with your body
• tingling hands, feet, mouth, or scalp

Some of these symptoms are more obvious than others so I’m going to break it down as it applies to me.

The first time I realized I was allergic to apples, some 17 years ago, it was because the apple sauce I kept eating for lunch while pregnant with my eldest made my throat kind of itchy and feel like it was a touch swollen.  Swallowing was slightly difficult but not anything significant.  I can’t stress enough that this was extremely mild.  I thought I just had a touch of a sore throat like I was getting a cold, only it only happened when I ate the applesauce and there were no other cold symptoms that ever showed up.

What I know now is that I built to that and hadn’t even recognized the earlier symptoms.

Here is what an allergic reaction, that doesn’t always involve my throat, looks like to me now that I know what to look for.

First, my stomach is upset.  It feels overly full, like I just ate a huge feast, even though I only ate a normal amount, and I’m maybe a bit nauseous but always extremely gassy.

Then an hour or so later my chest starts to feel tight.  It’s like I have bronchitis (the best comparison I have because I’ve had it so many times) only I’m not coughing.  All in all, it feels like my lungs are being seized and it’s hard and even painful to breathe.

Somewhere in this comes the ominous feeling of doom.  Something isn’t right.  In fact, something is very very wrong.  If I’m paying attention to it and recognize the symptoms, then I pin it down to something being very wrong in and with my body.  Folks, this is because I’ve poisoned myself and am potentially dying.  I should feel like something’s wrong.  Don’t discredit this feeling.  It’s almost like a panic attack without the racing heart.  It’s just ominous. 

Around that time, I sometimes, but not always, feel like I’m having a hot flash only it doesn’t go away like my hot flashes usually do.

Usually, if my throat is going to come into play, it’ll happen about 2 hours out.  A mild reaction means it’s just sort of scratchy.  Maybe a touch of difficulty swallowing, but not so bad that I can’t take a small handful of Benadryl.  Of course, a serious reaction means that handful of Benedryl needs to instead be liquid and if you can’t even do that, you need to use the EpiPen.

Some would say that you should have used the Epi earlier in the process.  Talk to your doctor about when it’s an Epi emergency versus when it’s just a Benedryl emergency.  The next step is to get yourself to an ER for steroids and shit.  Don’t do what I do (which is to take too much Benedryl and sleep off the maybe dying process).  Seriously, don’t do what I do.  One of these days I’m going to wake up dead.  Also, and I can’t stress this enough, if you had to use your Epi it is 1000% time to go to the ER.  Don’t drive, call 911.

Now another point to make.

I described this as a process that takes hours to fully develop.  This is not even close to always the case.  I described it this way to really fully make the point that just because your throat didn’t close up immediately, doesn’t mean you didn’t have a reaction and it doesn’t mean that it won’t.  

I’ve heard plenty PLENTY of stories where someone was exposed to something they shouldn’t have been and it took all of 30 seconds for their throat to close and the only reason they survived is because there was someone right there with access to an EpiPen who knew how to administer it.

Anaphylactic can play out in hundreds of ways.  It can take on any combination of symptoms and it can all happen really fast or it can take hours for a reaction to develop.

The first reaction can be so mild that you don’t even realize you had one at all, allowing you to repeatedly expose yourself to the allergen until it finally clicks what is happening.  Each exposure getting a little worse than the previous one. 

Example:

Somewhere over the last couple of years, I’ve developed an allergy to jarred red sauce for like pasta or pizza.  I’ve been tested and I’m not allergic to any of the individual main ingredients (tomatoes, mushrooms, the herbs) so we’ve collectively (including the doctor) come to the conclusion that it’s the preservative.  The solution for the past few months is that I’m only allowed to eat fresh, homemade, red sauce.  Most pizza chains are ok.  (Papa John’s is not.)  Pat has his grandmother’s recipe.  I am fine.

However, two nights ago I may have had a mild reaction to Pat’s homemade sauce.  I don’t honestly know because I happen to have a cold and honestly, early reactions already look like a cold so it’s stupidly hard to tell the difference.  I just know that my chest gradually began to tighten and my throat became compromised.  But that happens anyway with a cold?  I took a couple of Benedryl and went to bed.  I still don’t know if I had a reaction or not.

So I guess the next time I expose myself to it, I need to make sure I’m otherwise healthy.  Only then will I know for sure.  

(Also, if I’m allergic to red sauce I’m going to straight-up riot.)

There is no one way to experience anaphylactic shock.  It doesn’t look the same with every person and it doesn’t look the same with every allergen and it doesn’t look the same with every exposure to the same allergen.  It’s progressive with time and exposure.

So learn the symptoms.  Learn to listen to your body.  And if someone says they are maybe having a reaction, don’t discredit them just because it doesn’t look like you see on TV.