About me (updated 8/4/2020)

Hi, I’m Heather.  Welcome to my blog and I am so glad you found me!  I am on a mission to bring awareness to Rare Diseases and brain tumors.  I am living with a hereditary cancer syndrome called Cowden Syndrome, and 2 rare cerebellar brain tumors and to be honest, it freaking sucks.  Writing here on the blog helps me to manage my feelings and fears.

circa 2008

I recently read that I should have an outstanding ABOUT ME page.  I don’t know quite how to do that, but this is my first step and as like I am – it’s a continual work in progress.

I am grateful to have had a bit of “press” from the blog.  The links are below if you’d like to check them out.  Please tell me what you think!

DNA Today – Discover New Advances in the World of genetics

My Gene Counsel – Beyond BRCA: Cowden Syndrome

Some fun facts about me:

  • Favorite colors are green and gray
  • Started application process December 2013 for disability.  Was denied May 2017
  • Favorite TV shows:  Days Of Our Lives and 90 Day Fiance (all of them)
  • Favorite movie:  Grease
  • I HATE the words root, stump, moist, and stiff. And I HATE balloons.
  • A few bucket list items:  Travel to Hawaii, Alaska, and Times Square.
  • I am a loving Cat Mom:

Tigger

Kona

Thanks much to photographybyjaana.com for my pictures!

47 thoughts on “About me (updated 8/4/2020)”

  3. I really enjoy your blog, keep up the great work! It’s been hard for me to find blogs with people documenting their experiences with rare diseases. I’m running a social media campaign raising awareness for rare disease in Australia and this has been a learning process 🙂

    Reply

    • I think there might be a few people in one of the support groups I check in on from time to time that are from Australia. Are you a rare disease patient as well? PS, thanks for the thumbs up! 🙂

      Reply

  4. I should go check your friends blog out then 🙂 I don’t personally have a rare disease but noticed how under-represented it was in Australia and I wanted to learn more about it. I’ve only gotten FB friends following the campaign but if they’re more aware of rare diseases through me I’ll be satisfied.

    Reply

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  9. Hi there.

    Thanks so much for sharing your journey. #4 on your list is just hysterical. I will never hear those words the same again.

    Thank you for stopping by my blog. Your blog and bravery are inspiring. Cheers.

    Reply

    • Thank you for reading and commenting. 🙂 When I first began this blog last year I had NO idea how helpful it would end up becoming for me. One of my many tools in my back pocket for sure.

      Reply

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  15. I was just going through my blog entries, and realized that you have read every one of them. Thank you for your kind words and for your interest and support of a stranger. Please stay in touch.

    Reply

  17. I enjoy reading your posts. And thanks for always reading mine. I’m glad that I ventured into this world of blogging as it has assured me that I am not alone in my battles and has also introduced me to other brain tumor warriors such as you. Keep fighting and stay strong!

    Best,
    Chris

    Reply

  19. Hi Heather, I was just reading a past blog entry of yours called ‘Heart’. Just to let you know, there is some info out there which links Cowden’s to the heart in that it can affect the contractibility of cardiac muscle. I posted a link on my FB page a while ago. Best wishes.

    Reply

  23. Heather,

    As a probation officer, I work with many people every day who are going through the Social Security Disability process. If you aren’t already aware, it often requires multiple denials followed by the hiring of a Disability-specialized law firm or attorney, and several hearings before an Administrative Law Judge (ALJ) before benefits (and retroactive back-benefits!) are finally awarded.

    Good luck,

    Denny

    Reply

    • Dear Denny: Thank you kindly for your warm comment. I was actually denied 2X then hired an “advocate” (I use that term loosely) – who represented me before the ALJ. I was denied in 22 pages of his “details” first and foremost that I was “calm and collected” in his courtroom.

      I’ve given up for the time being.

      Thank you again. 😀

      Reply

  24. Sorry to learn of your illness. I would say it’s very hard for you. I admire your efforts to bring more publicity to such health issues. Wish you well. Oh, nearly forgot ! thanks for checking out a recent post. I’m glad you enjoyed it.

    Reply

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