After two long months without IVIG infusions—and feeling the steady decline that came with it—I’m relieved to say that I’ll be restarting my Gamunex-C infusions on June 27 & 28. I’ll be going every other week, two days in a row, receiving smaller, slower doses that are gentler on my body and won’t produce as many side effects.
I had to advocate for myself, especially when my doctor initially stopped the infusions altogether. I knew I wasn’t doing well and continued to feel worse, physically and emotionally. But speaking up for yourself in the medical world—especially when you’re dealing with a rare disease like dermatomyositis—can feel overwhelming, even intimidating.
That’s when my guardian angel stepped in: an infusion nurse with over 40 years of experience, including more than a decade as the director of the Johns Hopkins infusion center. She now manages an online discussion board for patients receiving IVIG for various autoimmune and neurological conditions. The knowledge, resources, and encouragement I gained from her—and from that online community—were exactly what I needed to advocate for myself with confidence.
But getting here was far from easy.
One important thing she taught me: IVIG treatments often come with a “worse-before-better” phase. And she was right. After my first two infusions back in April, I felt worse for several weeks. It was discouraging and confusing—until I learned that this is a common response as your immune system begins to shift. Unfortunately, because of the two-month gap in my treatment, I’m essentially starting over. I expect it may be another tough road before I start to see improvement, but this time, I’m going in prepared—mentally and physically.
📸 In the photo I’m sharing with this post, you’ll see me and my loyal sidekick River in our backyard oasis. I’m wearing a shirt that reads “Rare but Remarkable,” and that message couldn’t be more fitting. Living with a rare disease means constantly navigating unknowns. It means advocating when you feel unheard. And it means continuing to hope—especially when the path ahead is unclear.
But I know this much: I’m not alone. And if you’re reading this and facing your own battle, neither are you.
Keep asking questions. Keep learning. Keep fighting. Your voice matters—and so does your healing.
I developed a passion for wellness after I experienced many years of health issues. Taking care of myself through exercise, healthy eating, and reducing stress, is what led me to a career in wellness. I decided I wanted to help others learn the benefits of a healthy lifestyle.
I have been the Wellness Director at Ivy Tech since 2013. I previously worked as a Health Advocate and Personal Trainer at St. Vincent Healthy Lives and prior to that was a Fitness Tech for Ivy Tech and personal trainer and group exercise instructor at the Dunigan YMCA. I also taught classes in senior living centers and conducted private personal training sessions for people of all ages.
I have two Bachelor’s degrees from USI in Communications and German. I am a certified Health & Wellness Coach through Wellcoaches and received my personal training certification through the American College of Sports Medicine. I am also Reiki Level II certified and a member of the American College of Sports Medicine® and the International Association for Worksite Health Promotion. I also have a background in mental health and certified in Adult and Youth Mental Health First Aid and completed ASIST (Applied Suicide Intervention Skills Training) and I'm a QPR Suicide Prevention Instructor. In December 2024, I graduated with a Master of Education in Student Learning and Wellbeing at the University of Missouri.
When I'm not exercising, I'm busy volunteering for several organizations including St. Vincent’s No One Dies Alone program. In 2011, I ran in the Marathon for the Cure in Washington, D.C. and raised over $6,200 towards breast cancer research. My mother, who passed away from breast cancer, was my inspiration for doing this. I also competed in several triathlons and love to travel and spend time with my 16-year old daughter, my friends, and my dog and three cats. I love animals and started a pet therapy program at Ivy Tech called Paws ’N Relax to help students manage stress and anxiety during final exams.
At Ivy Tech, we are more than just a Fitness Center. We believe in treating the body as a whole and working on body, mind, and spirit. We have programs that focus on the nine area of wellness: physical, emotional, social, spiritual, intellectual, financial, creative, environmental, and occupational. We offer a Relaxation Lounge and emWavePro Biofeedback program to help manage anxiety. Stress is a contributor to many health issues and we want to make sure you have tools to manage it better. We want to help you live a long, happy, and healthy life.
Update: In the Spring of 2023, I was diagnosed with dermatomyositis which is a rare auto-immune disorder that causes rashes and attacks the muscles. I have developed severe muscle atrophy, pain, and weakness. I am still exercising, eating healthy, and managing stress now more than ever. There is no known cause for this condition but it is treated with medication and a healthy lifestyle. I am just taking it one day at a time and continuing to help others learn how to live a healthy lifestyle.
View all posts by alutzel
takegoodcareofyou.blog 