My name is Kimberly Dimond. I live in Traverse City and have been diagnosed with lupus for almost 20 years. I am also Executive Director of the Michigan Lupus Foundation.
Lupus is a chronic autoimmune disease that is often invisible. Those living with lupus often hear, “but you don’t look sick.” Yet everyday, I experience extreme fatigue, exhaustion, joint inflammation and chronic pain. I’ve had inflammation of the lungs, heart, kidneys, brain, ligaments and abdominal organs, a brain tumor severing my facial nerve and the associated conditions of fibromyalgia, Raynaud’s phenomenon and Sjogren’s syndrome, as many patients have in connection with lupus.
It is estimated around 14,000 Michiganders suffer from lupus and up to 1.5 million people in the United States have been diagnosed with some form of the condition. I’ve been committed to being a fierce advocate for lupus awareness to improve the quality of life for those of us living with lupus, develop better treatment options, and improve understanding of the disease.
5 Invisible Symptoms
- Generalized all-over pain
- Extreme fatigue (and fatigue is not the same as being tired. It’s a tired that sleep can’t fix.)
- Insomnia
- Organ & joint inflammation
- Brain fog
4 Things That Help Me Manage Pain
Having both lupus and fibromyalgia is a balancing act. Methods for relieving fibromyalgia pain can easily trigger a lupus flare. Generally, methods that have helped me with pain include:
- Gentle yoga
- Walking my dog
- CBD oil (THC free)
- Eating an organic and all-natural vegetarian diet
3 Ways My Life Has Changed
Lupus reshapes your entire routines, relationships, priorities, goals and even your identity.
- I’ve learned that my life is unpredictable. Lupus can throw you a surprise party on any given day. You wake up every morning not knowing how much energy you will have or how much pain you will be in. Simple tasks like grocery shopping, showering, cooking and household chores become major challenges and can be daunting. I preface rsvps and event plans to communicate with those around me that my attendance is always tentative with potential last-minute cancellations.
- Money, money, money. I pay over $30,000 a year in out-of-pocket medical expenses, even with health insurance, which is a burden those who are healthy will never have to face. Living in a single-income household on a very, very non-profit salary is challenging. I didn’t ask to have lupus, yet it affects my lifelong overall financial stability.
- One of the biggest ways my life has changed is actually visible. I had a brain tumor removed 10 years ago that severed my facial nerve and left me physically disfigured. I’ve had countless reconstructive surgeries transplanting muscles and nerves from other parts of my body. All surgeries have come with lupus complications. Having an “invisible” illness in some ways is more socially acceptable than a visible difference that leads to endless questions, looks, and rejections.
2 People Who Inspire Me
Focusing on traits instead of specific names, I’m inspired by anyone who is a mom living with a chronic illness. The amount of energy, time and physicality having young kids is a herculean task. I’m also inspired by anyone who has found a successful relationship with an understanding partner despite a chronic illness, as well as anyone who doesn’t let living with lupus stop them from finding joy. Anyone who keeps persevering despite the pain paves the way for us all.
1 Thing You Want People to Know
Getting diagnosed with an autoimmune or chronic condition doesn’t mean your life is over. Your life changes, but don’t let it dictate your happiness.
To read all of our previous zebra spotlights, please click here.