Building Resilience at a Turtle’s Pace

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I’m long overdue for updating my blog as it’s been nearly two months. I prefer to blog when I have more to blog about rather than just writing about random things every couple of weeks.

By the end of this post, the title should make more sense. So, hang with me.

Since my last post, I’ve had a few new developments. Since the drug Cellcept (mycophenolate) was not working well on my GI system, Dr. Wilfong at Vanderbilt, changed it to mycophenolate acid which is supposed to be more gentle on the digestive tract. Unfortunately, it is also much more expensive. But, if it works, I’m all for it. Initially, I was still having GI issues, but I think this may be improving (fingers crossed).

With dermatomyositis (DM) being rare and such a wacky disease, I have also developed two more medical issues to add to my list of ailments. I now have GERD (Gastroesophageal Reflux Disease) and sleep apnea, both caused and/or worsened from DM. YAY for me! So, in addition to my muscle weakness, pain, deterioration, increased risk of cancer, and rashes, I can now say I have these new issues. On a positive note, after having a sleep study done, I’m well on my way to getting a CPAP which should happen in the next few weeks. More than one doctor has stated that once I start this treatment, they believe my pain, GERD, fatigue, brain fog, and anxiety will improve. Oh, joy! I’m so tired of the fatigue and not feeling well, so I’m ready to get this show on the road.

On my first visit to Vanderbilt in December, Dr. Wilfong ordered a myositis panel (extensive labs for my disease). I had this done in Evansville, but it was sent off to a lab in Utah which produces fairly quick results. Dr. Wilfong wanted this panel done in Oklahoma at a myositis specialty center which is considered the gold standard. The only downfall is it takes nearly three months to get the results back. At my follow up appointment today at Vanderbilt, I found out that I tested positive for the antibody Tif1 gamma. This basically means that I am even more susceptible to developing cancer from dermatomyositis. I am at the highest risk in the first five years so this is when the majority of my screenings will be done. I will be tested for just about everything you can be tested for since I am at risk for about every type of cancer. Given that both my parents had cancer also makes me high risk. You might think this sounds like a death sentence, but honestly, I believe it to be another blessing in disguise. My doctors and I will now be more vigilant when it comes to cancer screenings and we could perhaps catch something early which could end up saving my life.

After seeing Dr. Wilfong today and discussing my progress, it has been decided to add one more drug to my cocktail. I will be going back on Plaquenil to help treat some of my joint pain which hasn’t been improving. It’s not uncommon to have to take several medications to get this disease under control (and it needs to be under control sooner than later due to the potential of damaging heart and lung issues). I am already eating very well, exercising (as much as tolerated), doing daily meditation, and working on better sleep. With this combination, I am hopeful I will see even more improvements in the next couple of months. I also found out today that I am down 14 lbs. My appetite has been down so that has made losing weight fairly easy. While I needed to take off some pounds (due to prednisone weight gain), it’s also not uncommon to lose weight from DM. I also feel better getting the excess weight off.

Lastly, I now reference back to the title of this blog, “Building Resilience at a Turtle’s Pace.” I brought up the topic of resilience because one of my elective graduate school courses I’m taking towards my degree is about building resilience and optimism. I’m learning just how resilient I am from all the various personal and professional trials I’ve been through in life. (If you don’t know what I’m referring to, I will just say buy the book as there will be one some day.) I’ve learned that resilience is like a muscle. The more trials you face in life, the more resilient you become. For me, this has been at a very slow pace which is kind of my lifestyle in general these days (like the pace of a turtle). Aside from these struggles, I still have grit and never give up. I am also pleased to announce I will be at my graduation on December 14, 2024 at the University of Missouri receiving my Masters of Education degree. I never thought this day would get here. Amy Lutzel, M.Ed. is how you will see my signature on all professional e-mails.

So, there you have it. Moving forward. Becoming more resilient. Happy to move at a turtle’s pace (for now) and just happy to be alive.

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Published by alutzel

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.

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