Sometime in January I read a blog post by one of my favorite vegan bloggers – Seyward Rebhal on her blog Bonzai Aphrodite, her post was about her failing health and a brief loss of faith in her vegan beliefs – something I also pondered when I was in the middle my health problems!
At the end of her blog post she said this, “It’s is a damn shame that there is such a stigma attached to this, that people feel the need to suffer in silence. I mean I get it, I do. As vegans we deal with enough skepticism from the “outside” world, and it can start to feel like you need to be a shining example of vegan health and perfection at every moment, or else you’re damaging the cause. But it’s a mistake, I think, that the leaders and bloggers and writers and others, are not sharing more of these sorts of struggles. Because we cannot fault people for giving in and going back, if they have no examples of how to persevere. If nobody shares their stories, then everyone feels alone.”
The fact that she shared such intimate details (and continues to share her changing life) really moved me. I’d missed reading her blog – she hadn’t written in a year and I didn’t know why! I’d wondered if once she got her book published she decided she didn’t need to blog anymore or she didn’t need her readers’ support. The truth is that she was suffering! I felt terrible that I thought she had blown off her readers once she became a vegan author/celebrity. Her words made me realize that I needed to write about my own experience in losing faith and being sick. Here it goes:
Sometime last February I woke up with trailing red marks and spots that were insanely itchy. I had previously fallen victim to the bed bug hype/paranoia of 2012 and had torn my bedroom apart searching for the little bastards. I had the king size mattress up against the wall and with a flashlight and magnifying glass I searched around the seams. I even built a bedbug trap with dry ice that I’d read about on some science website. Nothing.
Bug bite looking hives – I imagined something was burrowing under my skin.
So waking up to these itchy red marks that looked so much like a bug had been crawling and munching on my torso made it seem plausible that we’d finally gotten the bug. I thought I was going to have to either burn everything we owned or get one of those gigantic house bug tents and bomb the whole house. Except no one else had marks, not even our 2-year-old son. Odd! I didn’t have bed bugs… Not yet anyway.
I let it go and my spots came and went over the next month or two, they changed and moved. Just when I thought it had gone away it returned with a vengeance. What the hell? I’d get a day or two without any marks and get hopeful that whatever it was had gone away, just to wake up with more marks the next day.
It was itchy mostly at bedtime and it itched more after I started itching. I’d find myself scratching slow, deep, and hard – I felt my skin nearly tearing under my fingernails. That sort of an ongoing itch drives one mad. Not just mad, but depressed and confused and hopeless.
I came up with theories but nothing made sense. I wore long sleeves except to my yoga classes where the instructors would ask what happened to me. I didn’t know. I also tried to wear loose clothes without seams because seams would end in raised itchy lines. My bras and underwear were the worst offenders, jeans were bad too. The hives left lines exactly outlining my tank top i wore to bed and from wrinkles in the sheets. Is it my waterbed? The heat? The cat? I wondered if I was allergic to my son because the marks were often on the side of me where he slept against me. Alien abduction? The work of the devil? When one’s body presents an anomaly it sets up self doubt at one’s core.
Hives from my bed sheets
I finally cracked and went to the dermatologist with a “rash that itches and moves around every couple days”. A most vague and not very helpful description. I’d taken photos, I have an entire album on my phone titled “Rash”. The first dermatologist gave me antibiotics in case of bacterial infection and a steroid cream to help the spots heal. A month later and nothing had changed. I saw a different doctor: This dermatologist said I had “Chronic Uticaria” (hives lasting for 6 weeks or more) and “Pressure Uticaria,” which is hives caused by pressure – mostly from my clothes and laying in my bed. My seatbelt also gave me hives and often when I carried an armful of books back from the library I would end up with a rash on my arm. The doctor said it should resolve itself in 6-8 months and nothing would help; anti-itch creams didn’t do anything! To make me feel better he said some people get hives from heat, the sun, and even water. Some people get hives from taking a shower! I had a hearty laugh and felt slightly better (now I regret that laugh, getting hives from everyday things is horrible!). It wasn’t but a week later I was in the sun for a few minutes and I got a massive rash where my skin had been exposed to the sun. Not just a sunburn, being a redhead I’m no stranger to sunburn, this was raised and itchy and 5x as painful as a typical sunburn. I was now also “allergic to the sun” (officially called Solar Uticaria). Great. Ironically I was also a size 2 (from breast feeding for 2 years) and was prepared to rock my scrawny ass out at the pool all summer – think again freak!!! Thoughts of Michael Jackson came to mind. Fear of the sun, being a vampire, a recluse, the town weirdo, the old hag next door who the kids are afraid of!
Sun Hives on my neck (and a terrible haircut!)
My dermatologist ran countless tests for auto-immune diseases like Lupus – that was a relaxing week waiting for the test to come back…negative. Whew. We taked about cancers, hormonal changes, and immune system problems. I had every blood test under the sun and everything came back in normal ranges. I began to wonder if it was my diet. If being vegan was making my body attack itself. Something was wrong and tests weren’t showing what it was. I was prescribed antihistamines, 10 pills a day, 5 different brands, several times a day. Groggy as hell. Tired. Every month was a different combo. More of this, drop that, try this. I hate taking medicine and now I actually had to set alarms and keep a journal of pills taken. Antihistamines are not cheap! I learned to use coupons and watch for sales…and then horde them when they were on sale. I’d take my meds for a few months and then feel defeated, they weren’t helping much, then I’d go off the meds and it would get worse – but I wasn’t foggy and groggy. I couldn’t decide which was worse.
Hives from my seatbelt. ”Officer, I’m not wearing my seatbelt because it gives me hives!”
I talked to a fellow v*gan blogger about my hives. Wondering if she had had anything like me or if she ever wondered if she wasn’t getting sufficient vitamins, minerals, fat, or something from the vegan diet. I didn’t dare mention these thoughts to anyone else – I had to protect the vegan lifestyle and pretend that I thought it couldn’t be my diet! I wondered if being vegan wasn’t the ideal diet and if everything I believed and stood for (and blogged about) wasn’t the right path. Who am I? Being a vegan is in my top 5 identifying factors (Mother, Artist, Vegan, Environmentalist, Writer). I was having an identity crisis!
I was then transferred to an allergist who is an expert in hives. Progress. I got the full back panel of pin pricks to see what I might be allergic to, it was about 100 pricks of the most allergenic things on earth; that was exciting since I always wanted to do that. The test included pricks for eggs, cheese, cow’s milk, all kinds of trees and grasses, dogs, cats, weeds, feathers, molds, dustmites, roaches, chocolate (!), coffee, corn, nuts, tomatoes, cashews, yeast, soybeans, and beef. Yes, they even tested for things I told them I don’t eat! Turns out I’m slightly allergic to cats and very allergic to grass, but it wasn’t grass causing my hives in February and I wasn’t rolling around naked in grass either. Okay, good to know, here’s your check for $500.
Full back allergy test – ouch!!
Cat allergy test
Lots of questions and questionnaires. NOTHING in my life had changed when this started. I was sure of it. A sudden food allergy? Or a new and regrettable lifelong condition?
I got several more sun reactions throughout the summer. Sunscreen didn’t help. I partied deep in the shade that summer.
I finally had one of my hives biopsied – half of it sent to a local lab, the other half sent to the east coast somewhere. It came back as “hives.” Thank you very f@cking much, I already knew that and now I have a big red scar on my thigh too – perfect.
It wasn’t a doctor whose words triggered an idea, it was a nurse sent in to remove the stitches from my biopsy spot.
She shared with me that she had pressure hives as well and how she hated going clothes shopping because the friction made her body break out in hives. I finally felt like I wasn’t alone, for the past 10 months I felt like a circus freak. I needed a support group! During our conversation she asked if I was sure I didn’t start eating anything different or new drinks or vitamins. I said no, I hadn’t started anything new and I didn’t take vitamins. I was sure! But in bed that night I thought about what she said and it finally hit me. Somewhere in January I’d read a blog post about vitamin/protein powders and I was convinced I should add some vitamins to my diet just in case I wasn’t getting enough from my vegan diet. I don’t like swallowing vitamin pills so the powder put into smoothies sounded fantastic and the flavors were good too – not smelling like horse hay or that unmistakable smell of a vitamin store. What is that anyway? I got up in the middle of the night and looked up the blog post I had read and could just about line that up with the hives starting. The hives had started a few weeks after I started the powder. When the doctors asked me if I was taking vitamins, it didn’t hit me that the VEGA was vitamins and I forgot (I forgot!?!?!?) that I’d started the VEGA powder before the hives started. It wasn’t an immediate onset of itchy spots so I didn’t relate the two! I’d initially thought I had bugs anyway, so more time had gone by making it easier to not match up the cause with the reaction. I immediately quit taking the VEGA and about one month later the hives tapered off and went away forever.
That was one year ago. Thank the gods that is over!
I’m not saying that VEGA is a bad product! It’s delicious – I’ll give it that. They even advertise that their product is very anti-allergenic, but someone is allergic to everything – everyone is allergic to something…something like that. I’m allergic to something that isn’t considered commonly allergenic. No, I don’t know what that thing is – I just know I will not ever try another protein/vitamin powder as long as I live. I think I have post traumatic stress from the whole experience!
I lost my path, I lost faith, I wondered if I was wrong, I wondered if eating dairy was the right thing to do. I was confused, hurt, bewildered, depressed, and itchy. I’d cried so many nights about my condition and not knowing what its cause was. But I pulled through, it WASN’T my diet – well not the vegan diet in general anyway. I won’t come within a country mile of a VEGA smoothie again! I can stand firm in my vegan beliefs, I continue to save animal lives every day…and I blog.
Do you have a story to share? If you’re a blogger I encourage you to share your story too – to help people understand that they’re not alone and that vegans get sick too. No diet is perfect, changes sometimes need to be made to get one’s health back in balance. If you’re not a blogger, please feel free to share with me (in a comment below or privately).