How to Live with Myeloma without Defining Yourself By It
On April 14th, 2022 the NorthEast Myeloma Crowd Community Chapter joined together to share advice on how to live with myeloma without defining yourself by it. Regardless of whether you are a patient or caregiver, newly diagnosed, in remission, or relapsed, myeloma can be overwhelming and it's easy to feel like it has control of your life.
Ours was an uplifting, realistic, heartfelt conversation with excellent advice shared. We wanted to share this advice with the rest of the myeloma community as everyone can benefit from this shared knowledge.
We have separated the advice into two sections, quality of life and myeloma education/treatment tips so that you can explore what can be most helpful to you in this stage of the journey.
QUALITY OF LIFE
- Don’t be afraid to broaden your horizons - look for new opportunities and new things to do (one member took up drumming!)
- Keep your friends and family close and ask for what you need - they will do anything for you (even dex day shopping sprees!)
- Use this time to get healthy (working out can strengthen bones)
- Focus on what you can control
- Look at the sky every morning helps you find joy and perspective every day
- Choose gratitude and be thankful for where you are at this stage in life
- Attend positive workshops (spiritual or otherwise) that give you certainty and faith
- Keep God close and have spiritual connections
- Learn to meditate, listen to yourself and organize your mind
- Lower your expectations of yourself and others (it will lower your stress level)
- Give yourself grace and space
- Give yourself permission to splurge on yourself (spa treatment, time with friends)
- Take extra time for yourself
- Take naps when needed
- Give yourself permission to have a grumpy time (day, week) and deal with your emotions in order to be true to yourself and what you are feeling
- Take one day at a time
- If you’re having a tough day, remind yourself tomorrow will be a better day
- Make plans to have things to look forward to
MYELOMA EDUCATION AND TREATMENT TIPS
- Attend as many informational sessions as possible so you can have intelligent conversations with your doctors because knowledge is power!
- Become a teammate with your doctor through educated conversations and personal research
- Get a myeloma specialist (find one here)
- Understand the numbers on your labs and follow them
- Remind yourself of all the incredible advances that are happening in the myeloma field
- Look at the dates of the article you are reading (old research can be irrelevant due to new drugs/therapies that are being approved)
- Record your doctor visits to review (with approval from a doctor)
- If you can't record the visit, bring a spouse, friend, or support person to take notes during the visit
We hope that you can take 1-to 2 pieces of the aforementioned advice to find more peace in your myeloma journey and not let the disease define you or your loved ones.
If you would like to join the NorthEast Myeloma Crowd Community Chapter and be notified of upcoming events, you can click the button below:
NorthEast Myeloma Community
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about the author
Audrey joined the Myeloma Crowd as the Community Manager in 2020 after previously working in the nonprofit field for 4 years as a director of Fundraising and Development. She graduated from BYU with a major in Spanish and Nonprofit Management. Audrey is passionate about serving others, loves learning, and enjoys a nice mug of hot chocolate no matter the weather.