An Elusive Diagnosis, an Ephemeral Cure

An Elusive Diagnosis, an Ephemeral Cure

A year after I first got ill, I was sleeping on a friend’s couch, jobless, utterly alone and out of options. Was this the rest of my life?

Ever had a nasty mosquito bite? I’m talking about one that itches so bad that you scratch until you bleed. Now imagine having about 100 of those all over your body. That’s me.

I have a chronic condition, but no one knows what it is. It presents as a rash with large blister-like patches that wander across my body and sometimes makes parts of my body swell.

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 – even with constantly revolving types of antihistamines – and none of the tests done in a plethora of hospitals was able to find the source of the condition. 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.

Panic started to set in with the thought that this could be my new normal, which of course only exacerbated my symptoms. 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.

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About 6 months after the symptoms first started, I was on a daily dose of 200 mg cortisone injections – 4 times what they give you for an allergic reaction to a bee sting. Even with the cortisone, 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 any heating on in my house. Hence, I was forever cold, even though my skin was burning. I couldn’t sleep and only managed short unrestful naps of 20 minutes at a time, which at night, I would then follow up with an ice-cold bath to alleviate at least some of the itching. Until 20 minutes later my body would warm up enough again to start the process all over again. 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.

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. Besides my condition, I had a bunch of personal setbacks. My father had a heart attack and died. Following that, my brother had a serious accident, and my boyfriend decided to move and not tell me until he had no other option, giving me only 3 days notice to vacate the apartment. Finally, the company that I worked for went bankrupt and left me without the last 4 months pay. Of course, the more stress got piled on, the worse the itching became.

A year after I first got ill, I was sleeping on a friend’s couch, jobless, utterly alone and out of options. Was this the rest of my life? How could I find a job in a state like this?

I was desperate enough to try anything. I tried specialists all over Europe, desensitization, homeopathy, acupuncture, and even those 1-800 numbers that promise healing over the phone. Nothing worked. By then, the official explanation was that I had a combo-allergy, meaning that I was allergic or intolerant 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.

Treatment recommendation?

  1. Try to relax (ha!)
  2. Calm down (when has telling someone to calm down ever calmed them down?)
  3. And hope that this helps the immune system enough that it can suppress the symptoms over time.

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 (I have never before been scared to fly).

My seat neighbor 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. Vicious and persistent. Itching like a poison ivy rash on steroids. And the Chinese doctor in Belfast doesn’t practice anymore, nor did I ever find out what he gave me. But this time I am determined. This is not going to be my life. Seventeen years later, traditional Chinese medicine is much easier to come by and I am starting there. This time I will fight my disease and not work on suppressing my emotions, which only exacerbates the symptoms. This time I am accepting that I have a chronic condition, and while remission may not be permanent, it is also not impossible.

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