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What are you most proud of?

Within your personal life, health journey, or advocacy work, what are you most proud of, or what accomplishment fills you with the most pride?

  1. When I was diagnosed with Sjogren's Disease (still stubbornly called "syndrome" in many places), I began to write about the illness, and what it's like to live with it. One of my blog posts has been shared so many times (I don't know how many at this point) and people comment that it's extremely helpful in explaining the disease to people in their lives who "think it's in [their] heads". Whenever someone thanks me I am so pleased and grateful to contribute. https://healthpsychforliving.com/shes-not-a-princess-she-has-sjogrens-syndrome/

    1. , thank you for sharing the link! It is amazing to be an instrument that brings understanding and validation. - Warmly, Donna (Team Member)

  2. While working as a career counselor under a private contractor for the TANF program in South Florida, I witnessed rampant fraud that was wrongfully penalizing participants in order to get the numbers for the contract requirements. The perpetuation of learned helplessness was sickening in such a time limited for life program. Our supervisor also had some of us writing papers for him to get his bachelor's degree, which he was supposed to have already. I became a whistleblower. It came at a great personal cost that I could never have imagined. But, in the end the Inspector General for the state made sure clients had time restored, and that contractor can never do business in the state again. I lost my job, my house & my health. But, I would do it again. Many of my coworkers wouldn't participate in the fraud either & lost their jobs.

    1. , thank you for your integrity and bravery. I'm just sorry that doing the right thing/the moral thing was so costly. - Warmly, Donna (Team Member)

    2. Well, my health went from bad to worse. I was diagnosed with ME/CFS while still employed with this contractor. It's hard to advocate for yourself when you can't sit up or get out of bed. I even had a "right to sue" letter from the state. But my attorney missed the filing date & she was suspended from the Florida Bar for resisting arrest. I just keep trying to adjust. I have learned that all my work for non-profits has resulted in me being a bit of a non-profit. I still have a hard time calling myself disabled. Minimizing stress has become an art form. I am in a bit of a remission right now & clinging to it. I'm dedicating a lot of time to Covid-19 prevention, warning people that they could live through it, only to be disabled by Long-Covid, along with its numerous complications--not the easiest sell in rural Oregon. And of course, I caution those I see in "hamster wheel" working conditions or under "chronic acute stress" to make changes, since either of those with various genetic expressions can result in ME/CFS. Children and adolescents are no exceptions to this either. I appreciate your care & concern.

  3. What I am most proud of is the fact that my voice is resonating with those who also have my condition Tuberous Sclerosis Complex, which I can mention I can illiterate that my voice has gotten out via different forms TV, Podcast, conferences,

    1. that’s is fantastic. It always feels good to raise our voices for such important causes to us. ~Racquel~ team member

  4. I started writing about the need for widespread practice of trauma-informed care a couple of years ago. Since then, I've been invited by multiple professors, instructors, and medical professionals to work with them on building a curriculum for trauma-informed care! I gave a keynote at a symposium earlier this year, and am currently working on courses for CE credits to talk about trauma informed care from the patient perspective, from the neurobiology of complex trauma to what trauma-informed care looks like in practice. I also make the case for why it should be widespread: people with chronic illness and conditions that take years to diagnose and get help for deserve to be treated with more compassion and transparency than they are too!

    1. , that's wonderful - all medicine should be based on the principles of TIC, it is human, empathetic and connecting. Keep fighting the good fight! - Warmly, Donna (Team Member)

    2. that is amazing. I love how you focus on compassion and transparency. So important. Well done ~Racquel~ team member

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