I have Primary Immunodeficiency. It’s a genetic glitch, and it means my immune system lacks important protection against infections. It took a long time to be properly diagnosed. In the meantime, I was misdiagnosed, given medications that did more harm that good, and my life was plagued with long cycles of illness and brief bouts of good health.
The Healthy Years
In 2004, my medical doctor recommended I move to a drier, more moderate climate and avoid stressful, full-time work. (I would later learn this advice is given to many immunodeficient patients.) I moved away from the frigid blizzards and frenzied culture in New York to sunny, laid back Southern California. I thrived there in my thirties, and allowed myself to be an overachieving entrepreneur, making up for time that had been lost to illness in my twenties.
A Big Change
In 2010, I was teaching yoga classes, volunteering for a veteran’s non-profit, and managing a busy life coaching practice. I also was going through a divorce and fighting to save our home up against the mortgage scandals of that time.Then an electrical fire tore through my new rental home. I was homeless one week before Christmas, and lost most of my material things. The unexpected uprooting led to positive fresh starts: a relocation to the South, and lower cost of living. A rewarding job working for the military. And meeting my soul mate, and now husband.
But my health slowly continued to fritz, despite my healthy lifestyle, daily yoga/meditation practice and clean diet. After the military, my veteran husband, who is from the west coast, wanted to spend some time living in New York. Returning to the harsh climate, stressful culture, and high cost of living proved to be a very unwise decision for my health. Especially when battling a new infection that hadn’t been diagnosed yet.
It took five torturous years before this new infection would be discovered on a blood test. Borrelia Burgdorferi, a.k.a. Lyme Disease. It wrecked havoc on my system. A handful of doctors suspected I had immunodeficiency, but no one tested me for primary immunodeficiency, probably because it is considered rare. Until I met one immunologist who knew exactly which labs to run, and bingo! I finally had an accurate diagnosis that explained why I had been battling infections since infancy, and why my immune system didn’t function normally to keep fungus, viruses and bacteria like Borrelia in line.
As I continued to wait for the long process of insurance approving new medications, and the ongoing need for more tests, the side effects of systemic inflammation showed up on my skin.
Good-bye Healthy Skin
As clumps of hair continually fell out and I watched my hairline mercilessly recede, lines in my face deepened, my skin adopted a pale,parched, sickly tone, my face became increasingly swollen and puffy. I barely recognized myself anymore. I experimented with tons of conventional and “natural” products, and nothing helped.
I felt more and more helpless. It was bad enough feeling so sick on the inside. Now, people were seeing it on the outside. Instead of saying, “You don’t look sick” as I heard in my youthful twenties, in my forties I was now hearing, “You don’t look well” with blatant honesty from concerned friends and family.
I couldn’t hide how bad I felt. When I looked in the mirror, I couldn’t escape the fact that I was sick. I felt my self-esteem plummet, and avoided looking at myself, or even brushing my hair, to avoid being reminded that I was no longer healthy. I had become an overweight, physically limited, brain-numbed, acne-prone, chronically pained patient being shuffled by my loving husband back and forth to doctors and laboratories, life revolving around exhausting conversations, and relentless needle sticks.
Re-Writing My Story
Debilitating chronic illness steals joy, and blocks the benefits of an active lifestyle like visiting friends and family, working, running errands, exercising, engaging in the community.
I was used to being sabotaged by illness. I got really sick my senior of college, and had to quit school to work full-time in order to afford medical care. I had to downgrade aspirational career goals to whatever job I could physically handle. In my mid-twenties, I became so ill, I was given one week to live. As I watched friends pursue their dreams and reap the rewards, I spent my days frequenting emergency rooms, battling insurance companies, drowning in medical debt.
This time, I wanted to create a new story. I was tired of feeling defeated by another relapse of illness. I accepted my friend’s help to start a medical fundraiser, and that alleviated a lot of financial burden since I had become too ill to work. And I looked into ways I could help myself look, and feel, better.
Skin Care Solution!
I’ve always loved cooking, so creating batches of skin care products wasn’t a far leap for me.I started researching. A lot. I enrolled in an aromatherapy certification course and learned everything I could about the healing benefits of essential oils.
I was sensitive to a lot of synthetic ingredients, so I sought out the purest resources for my ingredients like Mountain Rose, Plant Therapy and Dreaming Earth Botanicals. I used organic and local ingredients whenever possible. I created a hair serum that magically brightened, softened and thickened my fine, thinning hair. I threw out my synthetic lip plumping gloss and made a natural one that made my lips softer and fuller than ever before. I even made my own blush from ethically sourced mica pigments and clays. I created 3 skin care products that transformed my skin.
Almost immediately, I noticed a difference. I looked in the mirror and oh my gosh, there it was. That glow. That bright, dewy, clear complexion, post-yoga workout glow. No more dry skin, no more deepening lines, no more blemish eruptions, and no more cracked, peeling lips. I was excited to do my twice daily skin care regime and kept reinforcing, I am well. I am well! I looked well, why couldn’t it be true?
Life goes in cycles. There are happy years, and incredibly stressful years. Sometimes unexpectedly horrendous things happen, and you’ll wonder why, and wonder if life will ever feel normal again. Then you realize life is a series of new normals, adjusting to inevitable change. What has helped me most during the challenging times is seeking ways to empower myself, and then realizing with each difficulty I’ve experienced, I’ve been given a meaningful gift to take with me when life cycles upward. My new skin care regime is something that I will continue to use, no matter where life takes me.