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    • Life With Multiple Myeloma
    • Dec 12, 2018

    Day 2 of Myeloma Giving: Share Your Myeloma Story

Day 2 of Myeloma Giving: Share your Myeloma Story

From December 10 – 21, the Myeloma Crowd is sharing 12 Days of Myeloma Giving. Please share this post and invite your friends and family to participate. Each day we will share something you can give to lift others. These gifts will save lives, lengthen lives and makes lives happier and more meaningful – maybe even your own.

The goal of the exceptional myeloma doctors I know is to provide the best possible care for each individual patient. Part of bringing you the best care is knowing what type of myeloma you have, studying your lab work and tracking your response to treatment. 

It’s become harder for doctors to spend as much time as they’d like in the clinic with us. They are overburdened and expected to see many patients per day. But knowing your story is just as important when it comes to providing you with top-notch care. 

When you’re in the clinic, it’s important that they know how you are feeling emotionally as well as physically. You should tell them about your level of family support (or not) or the real level of your side effects so they can customize care. 

One easy way to share that story is in a new feature we announced today inside of HealthTree called My Myeloma Story. (You can join HealthTree here). HealthTree is a tool for multiple myeloma patients to: 

  1. Find personally relevant treatment options
  2. Find clinical trials they are eligible to join
  3. Share our myeloma experience to accelerate a cure

My Myeloma Story inside of HealthTree is a place you can journal your experience with myeloma. How did you find out that you had myeloma? Did you have any clues as to what caused your myeloma? How did your family react and how has it been going through treatment? Currently, your Myeloma Story will only be available for you to see and print. In the future we will give you the option to make it public to other patients you want to connect with or give you the ability to share it with your doctors. Sometimes precision medicine means more personalized medicine. Beyond just looking at your labs, it’s key for them to know your story in order to provide you with the best personal care. You can find the My Myeloma Story in the left hand navigation of HealthTree. 

When I was first diagnosed, one of my mentors didn’t tell me how sorry she was that I had cancer. She said, “I can’t wait to hear what you learn from this experience.” Today I started writing my story in HealthTree and a flood of memories came back about my diagnosis, our family scramble to figure out what to do and how we selected my treatment. I realized how far I’d come. It was a wide range of emotions – sad, happy, and surprisingly therapeutic. I’m not afraid to say I sat there and cried. I realized how powerful it was to share My Myeloma Story. 

So today, share part or all of your story in HealthTree or with a friend or family member. You can reflect on what you’ve learned through this experience and see how you’ve become a resilient person who is consistently doing hard things. 

If you’d like to share part of your myeloma story and how you are using HealthTree in a 3-minute video, we are just beginning a video series and would love to include you. You can send a note to info@crowdcare.org if you are interested. 

 

 

About Author

Jenny A

Myeloma survivor, patient advocate, wife, mom of 6. Believer that patients can help accelerate a cure by weighing in and participating in clinical trials. Founder of Myeloma Crowd, Myeloma Crowd Radio and the CrowdCare Foundation.

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