Life is not about the steps you’ve taken, or the places you’ve been, it’s about the footprints you leave behind. My name is Cindy AKA @MyelomaTeacher and I hope the digital footprints I leave behind help a future generation of myeloma warriors become empowered patients.
I have grown tremendously as a person since my myeloma diagnosis. Prior to learning I had myeloma I was an uneducated/uninvolved patient who blindly followed doctor’s orders. I didn’t ask questions, research my conditions or seek second opinions. Today I am an empowered partner and an active participant in my healthcare. I attribute social media and the IMF as being major impetuses for my metamorphosis. I learned through online patient communities like SmartPatients, patient blogs, Facebook, teleconferences/webinars such as the IMF’s Living Well with Myeloma Series and Twitter. I learned by attending Patient and Family Seminars, Support Group Leader Summits and ASH conferences.
I was diagnosed with myeloma after being misdiagnosed with degenerative disc disease for two years. My orthopedic doctor prescribed pain medications and countless sessions of physical therapy to help with the debilitating pain I was experiencing, but I wasn’t getting better. I was getting worse. I remember thinking “Maybe my doctor should take an x-ray” (which he never did in the two years I was seeing him), but I didn’t speak up. I didn’t trust my instincts. By the time I was diagnosed with myeloma my bones were a mess. I had several compression fractures, suffered from osteoporosis and I lost over 3 inches in height. I started treatment immediately (without asking questions), but unfortunately I stopped responding to induction therapy after 4 cycles. I proceeded to have a stem cell transplant upon my myeloma specialist’s recommendation. My transplant failed to put me into remission and 100 days post-transplant I was back in treatment.
My myeloma specialist suggested 3 options. He gave me his recommendation, but ultimately it was going to be my decision as to which path I would take. At that moment I knew I was going to be partners in my care and in order to make informed decisions I needed to educate myself and learn how to make my voice heard. I am now in l remission on continuous maintenance therapy and very active in the myeloma community.
Being an educator my entire life it is only fitting that I use my passion for teaching to share what I have learned and continue to learn about the importance of patient empowerment, available resources, advocacy and research to a new group of students –patients, caregivers, doctors and anyone who will listen. My classroom is the internet.
@MyelomaTeacher is my personal Twitter handle http://www.twitter.com/myelomateacher. I have over 2600 followers and Tweet daily. I also occasionally tweet from the International Myeloma Foundation’s @IMFAdvocacy twitter account http://www.twitter.com/imfadvocacy. I’m the co-founder of #MMSM TweetChat and manage @MMSMChats Twitter account. I am an administrator of the Philadelphia Multiple Myeloma Networking Group’s Facebook page http://www.Facebook.com/PMMNG and website http://www.philadelphia.myeloma.org. Using Pinterest I created a series of Myeloma specific boards. http://www.pinterest.com/cynthiachmielew/ I am also a regular panelist on Myeloma CurePanel a talk show that features medical experts in conversation with a panel of patients about treatments under development. http://www.blogtalkradio.com/search?q=myeloma I hope that listening to my story others who are like I was , a bystander in my healthcare, realize the importance of becoming an empowered partner. resesrch shows that empowered patients have the best outcomes that was motivation enough for me. As the IMF says- Knowledge is Power