A PM Survivor! OVERCOMING Polymyositis

OVERCOMING Polymyositis Part III – Still Healthy!

Author: Elizabeth Sanchez

So where do I stand now?

I’m healthier than I’ve ever been! I’ve been completely drug-free since 2007! I’m also stronger and have worked very hard gradually getting back the muscle strength that I lost during my illness. I had the courage to listen to my body and knew it better than the doctors! According to my doctors at the time, both in Santo Domingo and in Cleveland Clinic, they would have kept me on the prednisone for an indefinite period, despite the inactive state of my disease. I knew I had to find my own way out of this, because being on drugs for a minute longer than necessary was not what I wanted for my life. I recovered because I became an advocate for my own health, an active participant, not just a blind follower. The medical doctors gave me NO guidance towards true recovery! Their perspective was a limited focused in one direction only…prescription medicine, which dealt only with the symptoms and caused their own set of dangerous secondary effects to my health. They refused to recommend any dietary changes that would help my situation. If I wanted things to be different, I had to make them that way; no one else could do it for me! I changed my diet, household and beauty products, added supplements and read countless books, studies, blogs, etc. on health. When I reached the final stages of tapering off the medication, I didn’t even tell my husband, because I didn’t want anyone to be skeptical or cast doubt on what I was confident were the right steps in my recovery.

One of the biggest surprises to me, when I reached this point, was the realization that no one really understands how to safely and effectively taper prednisone! It’s given as a prescription, practically without a second thought, to both children and adults for the treatment of numerous problems; however, the doctors don’t even understand how to get people safely off of this very serious and potentially life-threatening drug.

I’ve won both the battle and the war, however, even when you are recovered from any long-term illness, the possibility of the disease returning, lies in your every thought. The fact that PM is a chronic condition and knowing how quickly I can plummet back to a level of complete incapacitation is what keeps me motivated to not be tempted to return to unhealthy habits. As the years pass without PM showing its presence, my confidence rises and I am able to live life, not acting out of fear, but out of wisdom. My true test as to whether or not I was back and better than before was when I was chosen to be part of the cast for the professional musical production of Cats and I had to rehearse for 5 consecutive months, 7 days a week in 2008. I could hardly believe that I was able to keep up with that type of schedule, dancing, singing and training along with all the 20-year-olds! My family was in tears when they saw me on stage for the opening night. Everyone realizing that their fears of me never being able to return to the stage again were a thing of the past! For me, the applause had so much more meaning that night, because of the battle that had to be fought and won. The journey was tough, but worth every second!

Since then, I’ve established an academy for the performing arts for youth here in Santo Domingo. I’m always on the go and have the energy to accomplish what I need to for my job, my family and for me! I guess the most important message that I could share is that YOU, TOO, CAN BE HEALTHY AGAIN! It is possible! Don’t settle for a life that is less than what you want! There is a way, and you are stronger and more capable of making the necessary changes than you think! Don’t doubt yourself and the potential you have to heal yourself!

I consider myself a dynamic “work in progress”. The work is never over! Just as a good relationship requires constant work and attention, so does our health. We can always find a way to improve our health, spirituality and knowledge. The important thing is to be always on the right path. Now that I’m recovered, many people ask me why I still stay so strict to my diet? That’s easy…I never want to go back to how I was. The risk is too great, the work, too hard, to give in to the doubts that everyone else has about my lifestyle. I’m confident that my lifestyle choices are what keep me healthy. I plan on sticking to it for the rest of my life because the alternative REALLY  SUCKS!

 

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Myositis Support and Understanding Association (MSU) is a patient-centered, all-volunteer 501(c)(3) nonprofit organization Empowering the Myositis Community. Founded by Myositis patients, for Myositis patients, MSU provides education, support, advocacy, access to research and clinical trial matching, and need-based financial assistance.

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3 Comments
  1. Philipa Caldwell 2 years ago

    Thank you for telling your story. Mine is similar to yours. I also used a diet (from the Edgar Caye Remedies book), affirmations, and a sunny outlook. No negative gossip, magazine articles, or people. I focused all my energy on getting better. That was in 1983. I am still doing well after all these years. Each day is a gift.
    Knowing that there re others out there like me is very comforting. Again, thank you.

  2. LINDA BAKER 4 years ago

    Hi Elizabeth! I know it’s been years since you wrote about your struggles with PM, but I truly appreciate you taking the time to put this all into writing. My very dear friend was diagnosed with PM this week and she’s really struggling with the best way to deal with it. Of course her doc wants her to go on prednisone. Like you, she’d love to avoid taking it for very long–or not take it at all if that’s even possible. She’s a very healthy and active person, so this type of diagnosis has hit her HARD. I’d like to try and help be as supportive as possible, and I feel like one of the ways that I can do that is to provide her helpful information on nutrition. I’m a firm believer in using food to help heal the body and avoiding foods that can worsen health conditions. My instincts tell me that she needs to find a good nutritionist that can help her with detoxing and developing a diet plan (anti inflammatory) that’s best for her condition. Since she’s in the very early stages of the diagnosis and still dealing with the emotional side effects, finding another doctor right now might seem overwhelming. Do you happen to have any information about nutrition as it’s related to treating PM? Whatever you can share would be most appreciated. She’s such a wonderful person and I hate to see her struggle with this.

  3. Norharyati 4 years ago

    Thank you. I really needed this.

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