PATIENT STORY STAR SPOTIGHT

By Lauren Glause

Joint pain, swelling, migraines, weight gain, skin abrasions, depression, brain fog, fatigue, insomnia. I was debilitated. I had given birth to my daughter, Natalie, when I was 29 years old, and ever since then, I just didn’t feel well. At first, I dismissed my concerns as being a tired new mom, but some days, I couldn’t even get out of bed because the pain was too great. I knew this wasn’t “normal.” My unexplained symptoms took about two years to diagnose, and then, this life-changing lupus diagnosis was delivered by a receptionist who left me with more questions than answers. She offered to book a doctor’s appointment for me in four months, but that was unacceptable.

Luckily, I didn’t stop searching for information, and I eventually found a kind and patient doctor who spent time thoroughly explaining the disease process and my treatment options. I had 18 vials of labs drawn and was referred to neurology, psychology, and hematology for a follow-up. This past December, I was diagnosed with antiphospholipid syndrome, a rare blood-clotting disorder. With this additional diagnosis, my three-year journey to have another child came to an end because of the risks and new medications. Initially, I grieved for the loss of the future children I thought I would have, but eventually, I found peace and gratitude for the family I have. I have chosen to focus on my daughter and the life that I’ve built with my husband, Matt. I feel good about this decision, and the new medications have definitely improved my quality of life. I still get migraines, but it’s a few times a month instead of nearly daily. In short, the good days outnumber the bad days, and I’m grateful for the team of compassionate and competent medical providers who’ve given me new tools to fight this disease. I encourage everyone to advocate for yourself to get the best medical care possible. You deserve it.

As a person who tries to find silver linings in life’s challenges, I truly believe that some good has come to me from my lupus diagnosis. The support and love that I’ve received from my family and friends has been immense. I’m grateful for all the joy and blessings in my life, including joining this organization, attending the meeting for the walk captains, and connecting with fellow lupus patients. Some of you may be wondering why it took me years after being diagnosed to do a Google search for the Lupus Foundation of America, Greater Ohio Chapter. Truthfully, it has probably taken me three years to wrap my head around all of this. There’s no denying that Lupus is a scary diagnosis. Thanks to my care team and my network of support, I have slowly dug myself out of a deep hole of depression, pain, fear, and denial. Meeting with others who share my disease has given me another community of support, and I don’t feel alone any longer.

The Lupus Foundation of America, Greater Ohio Chapter is an inspiring organization that assists thousands of people living with lupus; helping them thrive, not just survive. I am still new to this foundation, but I’m excited about attending the support groups, listening to the podcasts, reading the magazines, and participating in events. I also plan to tell my medical providers all about this foundation and its resources, with the hope that they will provide more referrals to this incredible organization for newly diagnosed lupus patients. It’s critical for us to have a place to turn to that is filled with people who understand our journey. I think we can help each other and connect and share our experiences in the ways humans were meant to do. After talking with fellow lupus patients, I feel inspired to share my story and hopefully help others, as well.

I am a mother, wife, daughter, sister, granddaughter, niece, cousin, friend, occupational therapist, and lupus warrior. I love people, random acts of kindness, cooking, serving others, chocolate, art, home decorating, nature, antiques, and thrifting. I do not have time to be in bed with pain every day; no one does. We are all unique and have different passions, but we come together as lupus warriors, striving for better outcomes and improved quality of life. The upcoming walk is a big fundraiser for this foundation, but it is so much more: we walk together in solidarity and community to raise each other up.

I walk to find a cure, to educate, to advocate, to be an active mom. I walk for you, my fellow lupus warriors. I walk for me and all the loves of my life. I am hopeful that one day there will be a cure for this disease that has caused me pain and infertility and robbed me of some abilities I used to take for granted. I sometimes wonder what would have happened if I had known about this organization when I was first diagnosed instead of three years later. Then again, I think it was supposed to work out this way, so I could share my struggles to spare others from a similar fate. I spent much of those early years in a dark tunnel, but I’ve found my way to the other end where the sun is shining. I am hopeful, strong, empowered, and excited for the future. There is a place in the sun for those of us still in that dark tunnel. Find the help, interventions, and adaptations you need to move out of darkness and go to the brighter path forward. Let’s shine together.