Coping with lupus is difficult, but by learning the proper techniques and tools, life with lupus can still be positive and productive. I’ve been on dialysis and had to undergo chemotherapy, however, through it all I’ve tried my best to remain positive and stay productive. -Yaisa
When and how did you discover you had lupus? What symptoms did you experience?
I learned that I had systemic lupus and lupus nephritis in January 2005, after many years of being misdiagnosed and not knowing what was wrong with me. My symptoms ranged from numbness in my hands and feet, joint pain, hair loss, fatigue, a rash over most of my body, to swelling in my legs and ankles. For many years, I constantly felt like I had the flu.
How has your life changed since being diagnosed with lupus?
My life has changed in many ways since being diagnosed. I have a lot of physical limitations because of joint pain. I now suffer from avascular necrosis, which is caused by the loss of bone tissue. This condition in my right hip led to me having hip surgery in February 2011.
It’s a struggle on most days for me to get out of bed because I’m tired or in pain. I also have photosensitivity, which means that I have to avoid the sun. I really miss being outside during the summer months. Also, I’ve had to learn how to cope with taking more than 10 medications twice a day. One of the biggest changes for me has been socially because I’m not as active as I used to be. At times, I feel isolated from friends and family.
You’ve worked in both the nonprofit and the for-profit sector for 15 years. How did it impact your career?
Before my life changed with lupus, I owned a commercial cleaning franchise and I had started a real estate development company where I was buying, rehabbing and selling single-family homes in addition to working a full-time job. I finally had to give up being an entrepreneur and focus on my health.
In January 2015, after ending 13 months of chemotherapy treatments, I decided that I wanted my life and career to focus on helping women and children so I returned to the nonprofit sector. I’ve been working as an independent consultant for large and small nonprofits across the country. I was recently offered a job as a CEO of a major for-profit organization, which I turned down. Instead I took a position as Executive Administrator at a nonprofit recovery home for women and children. I will continue to work as an independent consultant. I have also recently re-instated my corporation and in January 2016 I plan to return to being a real estate developer.
What keeps you going? What motivates you to get up every day and face the challenges of this illness?
I’ve learned that I can’t control what happens to me in life, but I can control how I respond to it. Despite the challenges that I face, what keeps me going is focusing on the good things in my life rather than my struggles. I keep a gratitude journal to remind myself of how blessed I am. My daughter motivates me to get up every day and face the challenges of living with this chronic illness. I want her to remember me as someone who lived the best life I could, no matter what was happening to me physically or mentally.
What advice can you give to others who are battling with lupus?
Coping with lupus can be devastating. Your emotions can range from sadness and anger to total frustration. It is important to allow yourself to accept how you are feeling and acknowledge that you have good reason to feel this way even if others don’t agree. But also know that even though you may feel powerless, you still have power. You may have lupus, but it doesn’t have to have you! If needed, don’t be ashamed to seek the assistance of a mental health professional, doing so has helped me a great deal.
In your opinion, how can family and friends support their loved ones who are living with lupus?
Meaningful emotional contact is essential for someone suffering from lupus. Simple gestures, such as having family and friends listen and share words of encouragement can make a world of difference. I think the most helpful thing family and friends can do for a loved one living with lupus is to ask how they can support them and what they need–rather than assume they know what the person needs or how they can best support him or her.
What do you like to do for fun? How do you unwind?
Fun to me is spending time with my 12-year-old daughter. We have different personalities. She is free-spirited, fun and out-going, which is the total opposite of me. With her there is never a dull moment and she forces me to try new things.
I began practicing meditation a few years ago to help me deal with pain. It has now become a great way for me to relax and unwind.
Are there organizations that you are involved with that focus on lupus and/or that you recommend people contact for more information?
The Lupus Foundation of America has been a great resource for me. I highly recommend that anyone suffering from lupus seek out a local chapter to connect with. Lupus support groups are also a great resource. Sometimes you need to connect with people who understand what you are experiencing. The Lupus Foundation of America helped me to find a support group close to me.
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