How the Internet Helped Me Cope With My Rare Disease

When I came to grips with the idea that the short term relief I was getting from the medications might cause long-term damage, especially to my liver, I became desperate to get off of them. I'd tried in the past, but each time I dropped the dosage on my medications, my symptoms would worsen.

By learning from the mistakes of other angioedema sufferers online and understanding how prednisone affects the adrenal glands, I was able to wean myself off of the steroid completely. Prednisone takes the place of cortisol, a naturally occurring hormone in the adrenal glands. When a person uses this type of steroid, the adrenal glands create less of their own, and so the body eventually requires the steroid to continue working, which is why reducing dosage, even incrementally, can have side effects. I'd read that others were able to wean by dropping the dosage by 1 milligram each week, and that they'd increased the amount of other meds, like Doxepin, to help them. With the agreement of my doctor, this is what I did.

I also tried "oil pulling", an Ayurvedic cleansing ritual, received weekly acupuncture treatments to help with my anxiety attacks, and took probiotics daily. I'm not sure if it was the alternative treatments, the medication, or a combination—or if the condition simply eased up on its own—but after ten weeks, I was able to get off the Prednisone. A few weeks later, I weaned myself off of Doxepin too. I'm not cured, but I'm better. Now I only take steroids in emergencies, on top of one daily Allegra and one Zantac—yes, Zantac. Who knew that there were histamine receptors in your stomach, too?

I hadn't realized how intricate our bodies are until the angioedema. The reason my eyes become bloodshot right before I have a facial swell: tiny blood vessels in my eyes were swelling as an immune response. Amazing, how it all works.

I hate the cold, detached analogy that the body is a machine. Our bodies are simply what they are: they are us.

Now, I have enough confidence to be my own healthcare advocate and weigh my options before immediately taking a drug that a doctor prescribes. I can talk knowledgeably about different drugs, ask my doctor questions, and incorporate non-Western modalities where appropriate.

I'm not by any means advocating that people forsake their doctors in favor of Google. But today's technology offers people with rare diseases the ability to take ownership over their health and to seek support rather than dwell in sickness alone. Ownership, in my case, meant a combination of guidance from my doctors and the knowledge I'd gained from people, websites, and online forums.

In an ideal world, there'd always be a George Clooney nearby, reassuring us of our inner strength during rough times. There'd be doctors who could always eradicate the root cause while treating the symptoms. There'd be friends around whom you wouldn't mind burdening with how scared you are and how weak and pathetic you feel. But, as Kurtis Blow once famously said, these are the breaks.

For now, I'm perfectly content LOL-ing with my fellow swellies online about our "Botox lips without the Botox price" or hitting up a relevant thread on a chronic disease forum. Or, on the days when it's too intolerable, taking a few extra pills if I have to and crying into my husband’s shoulder.  

Five months ago, when I was a month into the disease, I wouldn't have said what I can confidently say now: I am completely optimistic that even if there isn't a cure for angioedema in my lifetime, I will be just fine getting through it.

Presented by

Simona Supekar is a writer and an English instructor at Pasadena City College in Los Angeles.

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