Be Your Own Advocate

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If there is one thing I’ve learned over the years about health and wellbeing, it’s that you must be your own advocate. Only YOU know your body so if something doesn’t feel right, speak up. No one can read your mind, not even doctors.

While I admire and respect those who work in healthcare, I know they are overworked and short-staffed. When I see doctors taking very little time on cases and rushing from one patient to the next, I know they need help. But, that doesn’t mean my health suffers. It means that I continue to fight for my health even if I start getting on their nerves. It also means I may have to go elsewhere to receive the best care.

My battle with dermatomyositis (DM) continues. I was diagnosed in April of this year with symptoms starting November/December 2022. I’ve been on prednisone since April which started at a high dose, but now I am down to 10 mg. It’s been just over five weeks from when I started on Cellcept – a strong immunosuppressant that will hopefully help me taper off the prednisone altogether. While these drugs have been necessary to get a handle on this disease, they definitely don’t have the most pleasant side effects (i.e. weight gain, insomnia, hair loss, GERD, gastritis, bone loss, blurred vision, bruising, delayed healing). Interestingly enough, my lab work always looks pretty good. The only numbers that are affected are numbers they have to keep an eye on due to the medications. Meanwhile, I continue to have flare ups particularly the skin on my eyelids and my hands along with muscular pain in my legs, hips, neck, and shoulders. I have had numerous tests and procedures to rule out cancer since it can be an underlying cause of DM and DM can also cause cancer. Crazy, right? I’ve had a CT scan of my head, neck, chest, and abdomen, bone density scan, barium swallow, ultrasound, endoscopy, total hysterectomy (including ovaries), and I have a mammogram coming up. So far, everything is clear. Since I had a colonoscopy two years ago, I won’t have one again until next fall. I stay very in tune with my body so I know if anything is out of whack, then I can report it.

I continue to exercise, including: walking, some biking, and strength training. This is necessary due to all the muscle loss from this disease. Even though I don’t feel like it most days, I still make myself as I know exercise is medicine and will help me in the long run. I just have to know my limits. Listening to your body is key. I also continue to eat well, although, not perfect. I include a lot of fruits and vegetables in my daily diet, lean protein, and mostly plant-based choices. I avoid gluten as much as possible and I only buy non-dairy milk, yogurt, and cheese. Even when I eat out, I try to stick to this diet as much as possible. Since I began meditating (in July) more regularly, I have completed 159 sessions on Headspace for a total of 1,522 minutes. I’m also setting limits with home and work activities and I’m very good at setting boundaries. I also utilize natural cleaning products, laundry detergent, and bathroom products. Self-care has been part of my daily regimen for several years, but I’ve been focusing on it even more since my diagnosis.

While you might be thinking that I stay positive and upbeat about this all the time, you’re wrong. I become very depressed at times even to the point that I have stated, “I can’t live like this anymore and I want to end the pain.” Despite those feelings, I know I have much to live for and that life is most definitely worth living. So, I don’t give up. I keep fighting. I realize that down days are just part of it. I’ve been through many trials in my life and I know I will get through this, too. I’ve always been a firm believer that everything happens for a reason. That all the suffering will lead to a higher purpose for me. A good friend reminded me of this recently when she told me that I’m already helping others just with this blog. (Hopefully, that’s true.)

Given the fact that dermatomyositis is a serious and rare disease, I decided that it’s time to head out of town to see someone who has more experience with this condition. I requested a referral to Vanderbilt Rheumatology. I imagine it will take some time to get in to see someone. I have heard positive things about the rheumatology department there and the drive won’t be too bad as I may have to make the trip alone sometimes. I will post more about this later.

In the meantime, I try to remain patient and keep doing what I know to do to stay healthy. I also pray for answers and healing. I just want to feel better. Lastly, I leave you with this: Don’t ever hesitate to think that you don’t deserve the best care. Keep pushing for it. Remember, to always take good care of YOU!

Hair thinning

Hair thinning

Face and eyelid flare ups

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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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