Home Forums I-Engage Support Forum Welcome to the I-Engage Community – Introduce Yourself!

  • Welcome to the I-Engage Community – Introduce Yourself!

    Posted by I-Engage on February 6, 2023 at 2:50 pm

    Hello, new I-Engage Community members! My name is Hannah (she/they) and I’m the Community Manager. I’m beyond excited to finally be able to share our community with you. I’m glad you’re here!

    The I-Engage Community is designed to engage people with chronic pain in their health care through engaging them with each other. Together, we are stronger; we’re more likely to seek help and stick to treatment plans if we’re not alone. I hope that this community can provide you with guidance, motivation, connection, and support.

    I’m excited to see what this community will become. Connection inspires positive change and that is what I hope to see here.

    I would love to see some introductions down below or as your own post in the I-Engage Support Forum. Reply to this post and share a bit about your chronic pain experience and what you hope to get out of this community. Respond to some other folks, too!

    I’m looking forward to connecting and growing as a community!

    – Hannah (Manager of Learning and Community, she/her)

    I-Engage replied 1 month, 2 weeks ago 3 Members · 4 Replies
  • 4 Replies
  • Heather

    February 7, 2023 at 4:54 pm

    Hi! I’m Heather, 51 years old, living in Virginia (USA), working in technology and a PhD student in epidemiology. I have Ehlers-Danlos Syndrome, with accompanying POTS and ME/CFS and other assorted things. I’m fortunate to be on a med regimen that lets me achieve pain level 0 for a few hours at a stretch. The first time I realized I had no pain, I just wept. I’m also 4’9″ (145cm), and the world is not designed for people my size, which complicates everything.

    Looking forward to meeting more people here!

    • I-Engage

      February 7, 2023 at 5:30 pm

      Hi Heather,

      Thank you for introducing yourself. It’s so nice to have you here as one of our very first Founding Members to join. It’s amazing that you’re getting your PhD in epidemiology. I have a Master’s degree in Public Health, so I can relate to the interest in the field! 😀

      I’m glad to hear that you have a medical regimen that helps you escape pain for a few hours. That is fantastic. I can only imagine the relief felt when experiencing that for the first time. Truly amazing.

      Welcome – this is so exciting!

      PS: Feel free to reach out to me whenever if you have any questions, comments, or concerns.

      – Hannah (I-Engage Community Manager)

  • Evan

    February 7, 2023 at 5:31 pm

    HI I’m Evan, I’m one of the moderators, and one of the chronic pain support group leaders. I have had chronic pain for about a decade. One of the more prevalent issues I have dealt with has been chronic migraines for about 5 years. I’ve been on monoclonal antibody therapy to counter migraine episodes. lately, I have chosen to discontinue all medication, following a two week cluster headache sequence. After 8 months on my latest biologic injection (2nd one I’ve tried), I found myself getting worse, not better. While my headaches seem controlled off the medication (~3 months so far, and for the moment), I still suffer from insomnia, brain fog, and fatigue. I also have peripheral neuropathy, and often wake up with burning sensations and sore joints and muscles. Every day is a challenge. I’m lucky enough to be able to work when I can, and rest when I need to. I’m looking forward to hearing how everyone is doing and hope to build up this community with mutually supportive members, who are motivated to help support each other, and help build and better the value of the i-engage community !

    • I-Engage

      February 7, 2023 at 5:41 pm

      Hi Evan,

      Happy to have you here as a member and moderator. Can’t wait to get started with our monthly support groups.

      Living with chronic headache, migraine, and neuropathy is definitely a challenge. Thank you for sharing your story and for being an important part of this mutually supportive community (great way to describe it)!

      – Hannah (I-Engage Community Manager)