“You are overweight.” I will never forget hearing those words come from my doctor. As someone who has always been fairly active, I never thought I would ever become overweight. After having three children and gaining more than 60 pounds, I decided that I needed to make some changes. I’d attended a birthday party at HAC and was amazed by the facilities. I decided that day that I could not leave HAC without becoming a member.
I hated being that mom who was out of breath running after her kids, and needed to act fast. Right from the start, HAC turned into my second home. I attended as many classes as possible, starting with Cycling. At first, I struggled to do 10 minutes of cardio exercise without being out of breath. But after a couple of weeks, I was finally able to generally keep up with the class.
Suddenly, one day in spin class, I noticed that after about 10 minutes, my legs started to burn as if they were extremely fatigued. My energy level plummeted, and at times I literally felt like I could fall asleep on the bike. I tried different things to boost my energy, but nothing helped. In addition to the extreme fatigue, I suddenly noticed a dark rash around my eyes. Between a very busy work schedule and taking care of my kids, I ignored it for some time, thinking it was something that would go away on its own. Eventually,
Eventually, things, like going up a few stairs or lifting my arms to do my hair, were difficult. I felt as though I were walking through sand and had weights strapped to my arms. The little rash I had now looked like I had been punched – it was so bad.
After some initial medical testing, I had no clear answer. I was told I had anything from Lyme’s Disease to Lupus. An autoimmune disease was very likely. The news of suddenly having major health issues was overwhelming and shocking. Through pure luck, a friend connected me with a specialist at the Johns Hopkins Myositis Center. There I met with one of the smartest and most compassionate doctors, who spent time reviewing everything with me. I was officially diagnosed with an autoimmune disease called Dermatomyositis. Der-ma-to-myo-si-ti-s. Yes, I had to write it out just like that a few times to even say it right.
Dermatomyositis is an inflammatory muscle disease that involves inflammation of the muscles or associated tissues, such as the blood vessels that supply the muscles. The inflammation is a response to cell damage caused by one’s immune system that is mistakenly attacking the muscle and/or skin. A reddish or purplish rash, presumably due to inflammation of surface blood vessels, can appear on the face or other locations on the body. There is no cure for dermatomyositis, although there are medications that can suppress the immune system enough to provide relief or remission. Therapies also include IvIG, where healthy immunoglobulin cells provide antibodies to a misguided immune system, allowing it to briefly function properly and reduce inflammation created by DM.
I finally knew what was wrong, but had a long, difficult road ahead of me. I could potentially end up in a wheelchair, I could potentially have cancer, or be diagnosed with cancer very soon– so many potentials that would change my life.
Most people who are diagnosed with DM are not able to maintain significant amounts of physical activity. My doctor encouraged me to be active in ways that my body could tolerate. No weights over 8-10 pounds. Moderation with everything else. I would be lucky to lift heavier weights or have any sort of endurance. This was surely not something I wanted to hear! It was devastating to even think about. I felt as though I had missed my chance to get back to being myself and reaching all of the goals I had planned. Often times people with DM are diagnosed with cancer within the first 5-6 years of their diagnosis. After watching my own mother battle cancer, I decided that in the next year I would have a preventative bilateral mastectomy, followed by multiple reconstructive surgeries. If I had any remote chance of preventing the high risk of cancer that I faced, it was time to act on it.
After being diagnosed with a major chronic illness, and facing multiple surgeries, I had to find some way to continue normalcy, and strive to reach those goals that now seemed so far away. One day, I overheard another mom talk about this excellent trainer at the HAC who was incredibly motivating and “hardcore” about getting her clients into shape. She invited me to try a small group FIT class with Dina Saitis. As I headed to my first class, I was very nervous – how would I be able to get through a class known for its intensity when I could barely walk up stairs? I won’t forget walking into the small group fitness room and being greeted by Dina – this petite, energetic and impressively strong woman. Dina was no joke. I could tell from the start that she was serious about hard work and commitment.
During that first class, Dina demonstrated the circuits one by one. I had no idea what a burpee was, but Dina showed me, and I may have laughed out loud! I pushed through the first class – I was nowhere near as in shape as the people in class, yet everyone had such positive energy and infectious determination. I felt up to the challenge of continuing classes, despite feeling like I needed to crawl out at times! I had never been to a class where the group continuously encouraged one another the entire time through each exercise! I was so impressed with Dina, her energy, intense passion, and her intellect for physical training. Dina encouraged me to keep coming to FIT classes. I was concerned about keeping up with the pace, knowing that I was limited in some ways due to the muscle weakness and endurance issues I had. Dina has been there by my side not only to guide me through exercises safely but to make sure that I used proper form and technique.
Over time, I have felt stronger and more confident with activity. Dina’s BLAST class really helped me to refine my form in rowing. Her instruction really helped me figure out how to expend the energy I have, (or don’t have on bad days), efficiently enough to be able to complete a workout and build up my endurance for other activities. Dina is hugely encouraging. There are times when I really appreciate hearing her close by cheering me on!
After building up more strength, I decided to try Dina’s POWER class. POWER really helps you learn proper form while teaching you new and innovative strength building exercises. It’s so inspiring to be able to stand next to some amazingly strong women who are also working towards their goals and having fun while they are at it! I feel that being in the class has really helped me to not be afraid of picking up weights in the weight room on my own.
I now feel confident enough to stand next to the other people in the weight room without thinking I look foolish! For someone who does not have a high level of knowledge for exercises, I saw a huge difference from Dina’s instruction and sound advice. More recently, I also started doing yoga with Maria DiCamillo. I had been seeking balance, especially in times that can be intensely stressful between work, kids, and bimonthly infusion treatments. I truly feel that yoga has helped me get refocused, which enabled me to find a sense of strength and calm when I needed it most. Maria is a wonderful instructor whose skill and passion makes me want to keep learning yoga!
Lastly, Dina’s BoxFit class has helped me realize how much fun fitness can be! BoxFit is a power-packed 30 minutes of boxing with a combination of creative circuit exercises that vary with each class. All I do is come prepared to punch hard and laugh even harder while burning a lot of calories!
HAC, in general, has such a wide variety of classes to choose from. Working with Dina, a certified personal trainer, has been one of the most important investments in my health that I could have ever made. Dina is invested in each person she works with – she motivates and keeps classes challenging. Her skilled advice has been such a driving force for me to keep trying new things and to continue to challenge myself. Even through recovering from multiple surgeries, I have been able to stay fit and active with Dina’s help.
Working with Dina in small group classes has allowed me to accomplish things I thought I would never come close to doing. I feel great, I’m having fun, and I’m getting stronger with each workout! The progress I have been able to make personally has been way beyond what I ever thought I would be able to do.
While some who are diagnosed with DM cannot participate in intense activities, I have learned that in my case, my muscles remain stronger with daily varying exercises. Exercise has proven to be my “medicine” of choice. Not only have I been able to maintain muscle strength most of the time, exercise helps me to get through daily tasks that were hard early on in my diagnosis. Dina has given me the courage to keep pushing through and not give up on myself. At times when I am not feeling great, I know that Dina will keep challenging me, while also teaching me how to modify certain exercises so that I can keep moving forward. I am learning to work through the challenges that I may face for the rest of my life, rather than letting them hold me back. I do not know where I would be now, without Dina’s support!
Along the way, I have had the fortune of meeting so many strong, determined, and positive people in the classes. Everyone comes to class to work hard, push through their own personal challenges, and achieve new personal bests each and every time. No matter what age or fitness level, everyone works hard and has a blast working out together.
Dina has changed my life in so many positive ways. I have come closer to my weight loss goal, been able to build up strength, and have proven to my doctors that continuing to challenge myself through fitness is one of the most functional ways of fighting back against my disease process. I have become more determined than ever to stay fit and live a healthier lifestyle. On both good and bad days, I now feel that I will one day reach my fitness goals, and I’m learning that you can overcome anything if you truly want to – if you are up for the fight. On those days when you may not be up for the fight, it is important to keep on moving forward in some fashion, even if it’s just baby steps.