Mayo Social Media Week Patient/Caregiver Scholarship Essay

 
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. July 14, 2014 was my 6 year Cancerversary.

I have grown tremendously as a person over these six years. Six years ago 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 patient and an active participant in my healthcare. I attribute social media as being a major impetus for my metamorphosis. I learned through listservs, blogs, Facebook, forums, teleconferences and Twitter.

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 compression fractures, suffered from osteoporosis and I had loss 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. By then I was actively researching protocols available to me, seeking second opinions and learning about clinical trials. Social media was my teacher.

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. @Cindy Chmielewski is my personal Twitter handle http://www.twitter.com/myelomateacher. I have over 2100 followers and Tweet daily. I also tweet from the International Myeloma Foundation’s @IMFAdvocacy twitter account http://www.twitter.com/imfadvocacy. Along with Dr. Thompson I organized the first #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 to bring the patient’s perspective/voice to the Social Media Week at Mayo Clinic and learn how to be more effective and reach a broader audience.

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