Immuno-Expression

Welcome to my personal (and growing) collection of tips, experiences, news stories and other resources that I have gathered in an effort to cope with autoimmune illness. If you are actively looking for information about how to manage your own autoimmune or related illness, this page is for you. And even if you don’t have an autoimmune disorder, I hope the information on this page will inspire you to handle whatever challenges come your way.

Managing My Mystery Diagnosis

The Art of Self-Diagnosis

The thing about having a mystery diagnosis is that there isn’t any text book I can refer people to. There’s no support group for people like me. As a result, it has been necessary for me to learn to be my own advocate, healthcare provider and number one supporter, all while also being the patient. It’s not something I would wish on anyone yet I also see the upside to these experiences. Because of them, I can relate to others when they are going through their own hardships. I know better than to think that people should snap out of it or find a distraction. I have also learned to be more adaptable and to recognize that life isn’t a series of check boxes. It’s a journey, and like most journeys it is often unpredictable.

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pHreedom!

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About a year ago, I lost the one form of exercise I could handle. Due to constant joint and muscle pain, there is very little exercise I can do without putting myself at risk. But I try not to focus on what I can’t do. Instead, I put away my running shoes, put on a bathing suit and converted a favorite childhood pastime into a preferred exercise routine. After joining a local gym with a pool, I committed to swimming laps three times a week. I’m not an Olympian by any means, but I always showed up. This little achievement made me feel like I had some level of control over my life, and my body. Everything changed for me last summer. From now on, I won’t go in a pool until I know that the pH levels are in the safe zone.

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Fake It ‘Til You Make It

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Some folks in my office building decided to bring a group of people together to watch Ted Talks, with the hope that some employees might be inspired to present our own homemade version of a Ted Talk. The Ted Talk we watched was one by Amy Cuddy, a social psychologist at Harvard. In the Ted Talk, Ms. Cuddy described how certain nonverbal postures can actually impact our physiology and chance of success. I don’t agree that standing in a victory pose will magically cancel out any real hardships. But I have learned that there’s nothing to be gained from broadcasting our challenges.

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The Pollyanna Paradox

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I once dated someone who observed that I’m drawn to depressing movies, TV shows and music. “Why?” he asked. “Because I feel that I can connect – that the writers and characters are expressing something I feel but cannot articulate,“ I said. He shrugged and said he didn’t get me. (I guess that’s why the relationship didn’t last long.)

Many years later I’m still drawn to melancholy or even self-deprecating humor (although the latter might just be a result of my neurotic Jewish DNA). This sentiment has carried over into my own forms of expression.

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Gluten Free Goods

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If you’re new to a gluten-free diet, you may not yet know which products are worth the spend. The best advice I have been given is just to avoid substitute foods entirely and try my best to live a grain-free lifestyle. But with my busy schedule that’s easier said than done. If you’re in the same boat as me and are striving to eat healthier but you still want some quick things you can grab for yourself or your family members, here are a few recommendations.

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Clean Your House without Killing Your Body

Cleaning

As someone who has multiple chemical and fragrance sensitivities, but an equally potent allergy to dust, I often struggle to find cleaning projects that solve one problem without causing another. This article from Houzz offers great suggestions for those of us who like to keep a clean house without exposing ourselves to potentially harmful fumes often found in bleach and other typical household cleaners.

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Ground Rules for Gluten Free Living

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A few years ago, I won an entrepreneurship competition and launched a gluten-free “Pi” business, defined as anything that had an outer shell and a filling. That business didn’t survive, but the collective wisdom of its founders did.

Converting your home kitchen so that is safe for gluten-free eaters may seem daunting. Luckily, my Pi team and I did a ton of research to figure out how to create a safe environment in our commercial kitchen. You may need to follow the most stringent practices or feel comfortable with a more lenient approach. Either way, there are some practices that we feel can’t be skipped and we wanted take the opportunity to share what we have learned.

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Disability Policy

CDC reports from 2005 indicate that roughly 22% of Americans had a disability, and disability-related costs for medical care and lost productivity exceeded $300B. The most common cause of disability is arthritis or rheumatism (MMWR, 2005). These disease categories typically do not produce visible signs of a disability and individuals suffering from them do not benefit from standard structural work accommodations.

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Managing Managed Care

A few years ago, I sat down with a friend of mine who was faced with a perplexing problem. After years of battling Lupus and a host of other health complications, which prevented her from being able to find regular employment, she found a promising new job. But there was one problem: she was going to earn too much to qualify for Medicaid. So she asked me to take a look at the plan that was being offered by her new employer to help her determine if it was manageable, or to see if we could find a better option. As I met with her, I found myself using terminology that wasn’t familiar to her, and I was reminded that the vocabulary I learned after years of advocating for myself isn’t something that is part of our regular vernacular. After all, our insurance system isn’t exactly user-friendly.

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