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If the swelling doesn’t kill me, the itching might


I am sure you have seen a movie where someone had a severe allergy. Mostly it is in a comedic restaurant setting, where a poor schmuck gets a rash all over his face, his throat swells up or eyes swell shut and someone comes running with an EpiPen.

Well, that’s me. But not just one time in a restaurant. No, that is me 24//7, off an on, over weeks, months, years. Not all at the same time.

Some days I will have blister like rashes on parts or all of my body. Other days, it will be in my neck and face. Or my face will swell up, or my legs or hands. Either way. It itches like 1000 have crawled under my skin and keep biting over and over.

And no one can figure out what it is. I have tested for all allergies known to man. I have tested for hormones, immune system deficiencies, parasites, bacteria, you name it, I have been tested. And I am happy to report: I am completely healthy.

Well, except for the wandering rash that consumes my life as I scratch. Some nights I have to take cold or scalding hot showers to numb my skin enough for it to stop itching. Only to then have to do that all over again 15 minutes later. Now imagine that 7 days a week, for all the time I don’t sleep. Which, by the way is many hours, because the itching won’t let me sleep and if the showers or wandering in the cold at night cool my body down enough, then I cannot sleep for shivering. Except in that blissful moment where the body warms up just enough and I can fall asleep. Only to wake up from itching like 30 minutes later.

It started in February, 2000. There was no obvious reason. Nothing had changed in my environment, I did not have more stress than usual, nor had I changed my eating habits, or detergents. Obviously, I went to the doctor and did all the usual allergy tests. But as time went on the itching got worse. No antihistamines, cortisone, steroids, nothing worked. None of the tests done in a plethora of hospitals showed a cause. While at first the symptoms would come and go, they started staying longer and longer until I looked like a human leopard in pink and yellow with the facial features of a botched plastic surgery and the scars of someone attacked by a rabid ocelot (yep, a different kind of animal).

Panic started to set in what if this was my life from now on? Of course, stressing made it worse. My lips looked like an overdose of botox, and my eyes puffed shut. Worst of all, my neck would swell up so badly that I had to call several times in a month.

About 6 months after the symptoms first started, I was on heavy daily cortisone injections. And still, my skin itched until it burned, and I scratched until I was bleeding. Most clothes felt like torture and I could not go out into the sun, nor have heating on in my house. Hence, I was forever cold, even though my skin was burning. I couldn’t sleep and was a nightmare to be around and work with. The cortisone and emotional eating added 60 pounds, but if I didn’t take the cortisone, I immediately would puff up again, not be able to breathe and would end up in the emergency room. While the cortisone did not take the itch, at least it stopped the swelling from becoming life threatening.

At the time, I worked as a developer at a startup. While they told me to stay home as long as I wanted, I needed to work. I was itching 24/7 and I was losing my mind if I was unoccupied. As a developer, I was able to hide in the office with 3 air purifiers on my desk to counter the burning of my skin. Not only did my startup let me wear pajama-like clothing to work (the yoga-lounge wear was not fashionable in those days), they never said a word when I was rushed off yet again by an ambulance, missed team meetings, or worked nights to catch up to past deadlines.

That year was also one of the worst years in my life. My father had a heart attack and died. My brother had a serious accident. My boyfriend decided to move – without me. And the starup went bankrupt and left jobless and without backpay. A year after I first got ill, I was sleeping on a friend’s couch, jobless, utterly alone and out of options.

Of course, the more stress got piled on, the worse the itching became.

One theory was that I have a combo-allergy, meaning that I am allergic not just to one thing, but to a few things in combination. Unfortunately, while there are good single-agent allergy tests, the substances creating combo allergies are only successfully diagnosed in about 5 percent of patients. Add stress and a compromised immune system (due to both the stress and the body’s endless internal battle) and the allergic reaction does not pass but remains. Indefinitely.

That year, I took a friend up on the offer to use his holiday home in Ireland while he was away, and on the airplane, I found myself contemplating everything that happened that year. I thought to myself, Jeez, I mean, what HASN’T happened. I was suddenly convinced the plane would crash….and promptly proceeded to throw up all over my poor seat neighbor.

He took it with the typical Irish sense of humor and gave me the address of a Chinese doctor in Belfast. This Chinese man didn’t speak a word of any language known to me. He looked at my tongue and took my pulse and made a few confirming noises. Then I got a strange concoction with gestured instructions to take it immediately and again the next day. And waddaya know. It was gone after 24 hours! All symptoms. Gone.

Since then, the rash has flared up a few times, but very mildly, and with rest and stress relief, I’ve managed to suppress it after a few days.

But now it is back. And it has already been 1.5 years again. I am itching like a poison ivy rash on steroids. I have found a Chinese doctor close to where I live and the symptoms are, what I call, manageable.

I still look like a boxing victim with the measles on many days and I itch about 50% of the time that I am awake. But I can sleep some hours and I can function and do my work. And for some days or sometimes even weeks in a row, it lets up enough that I just feel a slight irritating itch. As long as I do to the Chinese acupuncturist, I am doing ok, and can even enjoy life again. But now with COVID-19, my Chinese doctor is deemed non-essential and doubts start to arise as the symptoms do.

Still, I just tell myself this is temporary, and I maintain hope that I can get back to my treatments asap.

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