About Me

I’m Michelle, and I am a blogger and patient advocate. In 2016 I began using a new and rarely used treatment. I use an insulin pump to deliver cortisol, a hormone that sustains my life after losing my adrenal glands to malignant pheochromocytoma.

The change has been incredible. No it doesn’t cure cancer, but it’s given me my fight back and I’m living a full life in spite of cancer and the damage it’s caused.

Since then, it’s become my mission to help others fight. To inform and empower patients like me. There ARE better days ahead and we will change the world one small step at a time. This is not just for ourselves, the people walking this path behind us will look at our lives and know– there is hope.

Read my story here- From Cancer to Adrenal Insufficiency: A Story of Bravery (Thanks to Angela at The Inspiration Edit)

Articles published on The Mighty:

When Doctors Get Excited About How Rare I am

How I Choose to Live the ‘Rare Life’

Learn more about the cortisol pump:

thecortisolpump.com a comprehensive and research based guide to cortisol pumping.

Help me bring Hope Education and Awareness to Rare Disease by following HEARD on Facebook!

8 thoughts on “About Me

  1. Hello Michelle

    I hope this message finds you well.
    Thank you for the taking the time to help others to improve their quality of life with AI.
    My 6 year old daughter has been cortisol ‘pumping’ for nearly two years. It has been life changing for us both (although she is too small to recognise the impact of the changes to her quality of life).
    Now that we have settled into the pump protocol, I was wondering if you or any pumpers you know, get small lumps under the skin of their infusion sites? These lumps seem to take about three months to resolve.
    I look forward to any information you may have on this subject.

    Thanking you
    Tracey
    Australia

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    • Yes. Diabetics call these “pump bumps”, and while they don’t happen with every infusion site, they aren’t uncommon. As long as there is no sign of infection at the site (redness, swelling, itching, pain, hot to the touch) then pump bumps aren’t anything to be worried about. Just an annoyance that comes with pumping.

      I am excited to hear that your daughter is doing well on the pump. She’s the youngest cortisol pumper I’ve heard of!

      If you’re on Facebook, we have a cortisol pumper’s support group, aptly named “Cortisol Pump Group” it’s a great place to ask questions and share experiences!

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      • Thanks for the speedy reply and Facebook group, Michelle.
        As soon as I read about Professor Hindmarsh’s cortisol pump ‘replicating’ the circadian rhythm, I knew I wanted this for my daughter. The pump has made both our lives as close to ‘normal’ as possible and dramatically reduced hospital admissions and quality of life issues.
        The effort to obtain the pump, the ten minutes of ‘changing sites’ every three days and the extra cost, is so very worth it!!

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  2. hello my name is Lora
    I am sorry that I am posting this as a comment I could not find an email address.
    My son has been suffering from severe adrenal insufficiency for many years. He has had numerous adrenal crisis leading to septic shock. It was determined that he could not absorb the medication in his gut he has been on TPN for eight years he is currently J tube fed
    he has been stuck these eight years on IV Cortef we have approached his doctors only to have fallen on deaf ears the ability to try this method of delivery
    Please email me if you know of any doctors that are willing to do this treatment approach in Texas.
    Thank you for your time

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  3. oh my gosh!!!! Finally, a blog on adrenal insufficiency!!! I am a stage III adrenal cancer patient, NED for 3 years and trying to manage my insufficiency. I’m currently on pills but thinking of trying a pump. Thank you SO much for your blog, writing, transparency, and info. SO appreciated.
    Have you had any issues with edema and weight gain on long term hydrocortisone? It is a struggle for me. How active are you able to be? Thanks so much ❤

    Like

    • I don’t have any edema as long as I’m mindful of my electrolytes and stay hydrated. I gained 30lbs on oral steroids, the pump didn’t make me lose the weight, but it did make me healthy enough to exercise and work it off.

      I still have good and bad days, but since switching to the pump I do have more good days and my overall quality of life has vastly improved. I’m much more active with my family now, I homeschool my kids, we volunteer together. I go on walks 2 to 3 times per week, I do water aerobics and pilates and yoga twice per week. It took me a long time to get my pump adjusted correctly and recondition my body so I could do these things. Now if only I could keep my tumors from coming back, that would be perfect!

      Like

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