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Posted by Cindy Chmielewski (@MyelomaTeacher) · Mon, Jul 14 at 4:12pm CDT

Cindy Chmielewski - Patient/Caregiver Scholarship 2014

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 @Cindy Chmielewski 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.

Questions about the contest or the voting process? Click here.

SM Scholarship 2014

Maureen, Suzanne, Kathy Bertino and 35 others like this
 

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Cindy Chmielewski (@MyelomaTeacher) · Mon, Jul 14 at 4:26pm CDT · #

Help me make a difference in the myeloma patient community by leaving a comment or liking my essay ! Thanks:)

Sue VandeVelde VanDuyn, PromotingGHL, Nikki Graham like this

Phillip Jeffrey (@tyfn) · Sat, Aug 9 at 4:26pm CDT · #

As a MM patient, I am continually educated by Cindy via twitter. I value the information she shares, whether about clinical trials, research, new drugs that have been approved, or a positive response to a query I have. She rocks!

Nikki Graham (@nikvet) · Tue, Jul 15 at 10:44am CDT · #

Good luck!!! You're an inspiration to many!!

Cindy Chmielewski likes this

Cindy Chmielewski (@MyelomaTeacher) · Tue, Jul 15 at 2:08pm CDT · #

Thanks!

joan justice (@joanjustice60) · Tue, Jul 15 at 11:32am CDT · #

Thanks so much for this Cindy. You are a true teacher - learning every day and teaching others what you learn. I admire you and wish you all the best! And indeed, social media is a wonderful method - far reaching and cost effective!

Cindy Chmielewski likes this

Cindy Chmielewski (@MyelomaTeacher) · Tue, Jul 15 at 2:08pm CDT · #

Thanks Joan!

PMMNGMaddie (@maddiechunter) · Tue, Jul 15 at 11:49am CDT · #

Our support group in Philadelphia has benefitted so much from your commitment to communication and outreach through social media. We are all better informed, new patients find us and can gain support through your postings and you are constantly helping us to explore new ways to benefit from social media. You are a born teacher, Cindy!

Cindy Chmielewski likes this

Cindy Chmielewski (@MyelomaTeacher) · Tue, Jul 15 at 2:08pm CDT · #

Thanks Maddie!

suzierose (@suzierose) · Tue, Jul 15 at 12:15pm CDT · #

Cindy,
I love your level of enthusiasm. And the MMSM chat system you created along with Dr. Thompson is a great interactive discussion format. I like it a lot. Your efforts likely have contributed to the huge increase of myeloma dialogue via social media.

thanks for the all the work you do posting on various social media accounts with very helpful links on myeloma and what is happening in the field. Your efforts make a difference and help us become more informed patients.

suzierose

Edited: 07/15/2014 @ 12:24pm

Cindy Chmielewski, Mike Thompson, MDPhD, suzierose like this

Mike Thompson, MDPhD (@mikethompsonmdphd) · Tue, Jul 15 at 12:29pm CDT · #

Suzie -
You were also an early instigator for #mmsm.

suzierose (@suzierose) · Tue, Jul 15 at 3:09pm CDT · #

heheheheehe..:)...but Cindy was developer :) along with you

Edited: 07/15/2014 @ 3:11pm

Cindy Chmielewski (@MyelomaTeacher) · Tue, Jul 15 at 1:56pm CDT · #

Thanks SuzieRose~

Mike Thompson, MDPhD (@mikethompsonmdphd) · Tue, Jul 15 at 12:19pm CDT · #

Cindy has been critical to initiating and sustain the multiple myeloma social media (#mmsm) Twitter chats. I commented on this in the blog post "Online Patient Communities for the E-Patient: “Betwixt and Between” a New Patient and an Expert" here: http://connection.asco.org/Commentary/Article/ID/3645/Online-Patient-Communities-for-the-E-Patient-Betwixt-and-Between-a-New-Patient-and-an-Expert.aspx

Her efforts have contributed to the physician conversations about multiple myeloma on Twitter more than quadrupling between 2012 & 2013 http://ow.ly/xh3ms

Cindy Chmielewski and suzierose like this

Cindy Chmielewski (@MyelomaTeacher) · Tue, Jul 15 at 2:09pm CDT · #

Thanks Dr. Thompson!

3NT (@3NT) · Tue, Jul 15 at 1:28pm CDT · #

Cindy not only shares a lot of information through social media but actively pushes herself out of her comfort zone to learn more from experts. I hope the Mayo Clinic awards her a scholarship.

suzierose, Mike Thompson, MDPhD, Cindy Chmielewski like this

Cindy Chmielewski (@MyelomaTeacher) · Tue, Jul 15 at 2:07pm CDT · #

Thanks Pieter!

Laura Mooney likes this

Ksapudar (@ksapudar) · Tue, Jul 15 at 2:13pm CDT · #

There are lessons to be learned for all of us from Cindy's incredible journey. She is a true teacher in every sense of the word. I do not ever hesitate anymore asking my doctor questions. Cindy has taught me to be informed, always. Keep up the great work you do, connecting with people. You have always had that kindness within your heart and soul. Your strength is truly admired by this girl!

Cindy Chmielewski and suzierose like this

Jack Aiello (@jackaiello) · Tue, Jul 15 at 2:27pm CDT · #

Cindy, in my opinion, you've set the standard of any myeloma patient advocate using social media to help keep folks informed.

Cindy Chmielewski likes this

debdebbdebby Frank Glennon (@debdebbdebby) · Tue, Jul 15 at 2:32pm CDT · #

Cindy, Best of luck and they can only benefit by placing you in this position... your intelligence and experience can only help others to ask more questions...and be more active in their care.... and I believe this is your therapy ... sometimes when it is so important to help others we forget about our pain and misery...thus we become better at controlling illnesses ... You Life-time friend ... Debby Frank Glennon

Cindy Chmielewski likes this

Rose McGlew (@rosemcglew) · Tue, Jul 15 at 3:55pm CDT · #

Knowing you as a teacher both in the traditional classroom and in the Myleoma community, I cannot imagine anyone more passionate and qualified for this scholarship, Cindy. You give hope, inspiration and information to so many people in so many ways. Love you!

Hberkey likes this

Ronnie Maynard (@ronniemaynard) · Tue, Jul 15 at 4:11pm CDT · #

I cannot imagine anyone more passionate and qualified for this scholarship...

PromotingGHL (@billmchugh1) · Tue, Jul 15 at 5:40pm CDT · #

Cindy is an inspiration! A teacher leading by example...the information and support she provides is better than you get direct from your doc (I know, we share the same doc!) She's a huge resource and would be a great addition to any program you're offering.

Jmccue (@purple219) · Tue, Jul 15 at 5:41pm CDT · #

Inspirational and thank you for all your support/ guidance for my friend

amy (@awargo) · Tue, Jul 15 at 5:58pm CDT · #

Great essay Cindy! Truly an inspiration!

Beachrigby (@beachrigby) · Tue, Jul 15 at 5:58pm CDT · #

Cindy, Good Luck! Your a great advocate and teacher and deserve this scholarship.

Tammy (@trabern) · Tue, Jul 15 at 8:13pm CDT · #

You are an inspiration to every life you touch! Good luck!!

iambradstrong (@iambradstrong) · Tue, Jul 15 at 8:34pm CDT · #

I couldn't think of a better candidate for this program than the Myeloma Teacher! Cindy has been a source of inspiration and education for Myeloma patients. Her constant positive attitude is what first drew me to her. Her presence on social media is a comfort for all of us. Cindy - I don't know how I would have gotten through my first few months of this without you and I know I can count on you to help me through the next few as well. Keep on doin' what you're doin'!

Matt (@mpgoldman) · Tue, Jul 15 at 9:20pm CDT · #

I was diagnosed with myeloma 3 years ago. I discovered other myeloma patients through twitter. Cindy was the first person i began to follow regularly. Her positive attitude, understanding of the disease and support are all amazing and so critical to me continuing to thrive. I've learned a lot from Cindy and consider her the absolute perfect person for this opportunity.

Nancy Milano (@nancymilano) · Tue, Jul 15 at 10:07pm CDT · #

Cindy, Great essay! Good Luck! You deserve it! XOXO Nancy