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Why I've Accepted Being on 'Team No Hope' Because of My Pain

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I was diagnosed with idiopathic intracranial hypertension (IIH), also called pseudotumor cerebri. It means I have symptoms of a brain tumor, without an actual tumor. I have had severe eye damage twice, but miraculously, my eyes didn’t become permanently damaged.

What do my headaches feel like? It feels like a horn is trying to grow out the top of my head. Not a unicorn horn, more like a rhino horn. The horn feels like a giant molar tooth growing in. The pain feels like my body is trying to squeeze out my brain, but the skull just won’t burst open. I’m on day 816.

My life has changed because of my “horn” pain. I was a nanny, then a nursing student. I was a normal university student. I love skiing and roller coasters. I’ve gone scuba diving, zip lining, hang gliding and white water kayaking. I love going to the movie theater and games nights with friends. I had a life plan and goals. Now I’m a professional patient, chronic badass, medical hustler. I spend time meticulously planning the outings that I used to take for granted.

We have done every headache treatment to get rid of my horn. We spent a year treating “chronic headache” and “migraines” with ten different medications, three supplements, acupuncture, a chiropractor, a physiotherapist, massage, daith piercing, exercise, water, diet and a bunch of other lifestyle changes. Botox was the last migraine treatment which was a bit much. 31 injections between eyebrows and shoulder blades, costing over $5,000 per treatment (covered by insurance). Currently, I’m on a “nightmare” medication called acetazolamide. Acetazolamide decreases the amount cerebral spinal fluid my body can create, while creating awful side effects. Acetazolamide is the only reason that I am not severely visually impaired. I should be grateful to take it four times daily.

There’s hope for every treatment and every new doctor. Hope, to me, is a shiny object just out of reach. My shiny object is a super boring life, with a job and husband and a couple of kids, but all the treatments have failed to take the pain away, destroying hope. Each appointment makes me confront the reality of living with pain forever. Hope helps ignore reality. Hope makes me forget how awful it feels to wake up every morning. Hope says “of course you can!” Reality says “nice try, you need a nap.”

The last treatment for IIH is surgery. I’m on a waitlist for a shunt. I failed to qualify for a stent after a difficult cerebral angiogram. The major test to qualify for the shunt was pretty miserable too. At this point, hope for an easy surgery and better quality of life seems impossible.

I usually try to go into medical situations with no hope. My friend gave us the nickname “Team No Hope.” I can relate to the Batman villain and Bane too easily. He says things like, “There can be no true despair without hope.”

It’s been easier since being on “Team No Hope.” When you lower your expectations to zero, any kindness, luxury or goodness in the world becomes shocking. It’s easier to enjoy the present when I’m not waiting for a phone call with life-changing news. My general optimism says: you’re in pain, nauseous, exhausted and itchy, but at least you’re not cold!

Overall, I’m happy. I am able to do things with some modifications, like volunteer with kids and host games night with friends. People always comment on my “positive attitude” like it’s a miracle. I don’t think it’s an accomplishment to not be depressed. People always ask me about the future. They talk about finishing my bachelors of nursing or holiday plans. If I try to explain “Team No Hope,” people look at me with so much pain and anguish. It’s strange seeing pain in other people. Still, they don’t understand that my “horn” pain is actually less painful than to talk about than my future.

Originally published: April 20, 2018
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