A personal story

From Risa Heidt, triathlete, ironwoman  – Marshmallow Clouds –  It was September 2018.  In preparation for my next big cycling event, a 100-mile Century ride in New Mexico, I rode 50 miles a day for weeks and pumped iron to keep my quads solid.  I loved every minute of it!  The surge of adrenaline on the fast downhill stretches of road, the feeling of euphoria crossing the finish line, and the sense of accomplishment I gained from conquering intense personal challenges left me feeling complete.  I am an Ironman Triathlete.  Five hundred mile bike tours are my norm.  And climbing mountains around the US, Nepal, and other countries have been my lifetime hobby.

Mostly though, I am just a girl who loves to ride her bike.

Preparing for this bike ride felt different, however.  I had been training all summer but felt as if I could never recover.  I was exhausted, and could barely get out of bed.  Severe, continuous headaches had me sleeping 2-3 hours each night, propped up in hopes of finding relief.

Something was obviously wrong.

Months, even years earlier, I told my doctor that I was certain something was not right in my body.  My weight had increased significantly despite being a health and fitness fanatic. I had excessive hair growth, severe headaches, extreme fatigue, and joint pain…just to name a few symptoms.  She said I was over-training and that the weight gain was nothing to worry about because I was so fit.

Not being someone who sees doctors regularly, I deduced that the hair growth was my Romanian heritage; the headaches were dehydration, and the fatigue and joint pain were from training too hard.   But how could I explain a ping pong sized bony spur growing out of the left side of my head?  Or symptoms of being menopausal in my 30s?  Or sudden weight gain when my eating habits had not changed?  Or the symptoms of an irregularly behaving Thyroid despite “normal” bloodwork?  My doctor simply crinkled her nose and tilted her head in confusion, saying, “Huh, that IS strange.”

I finished my 100-mile Century ride, but instead of blazing through the challenging course, I was one of the last to finish. And in the weeks following, I felt physically annihilated.  The headaches worsened and became close to unbearable.

This time, I asked my doctor for an MRI.  She said, “No, I don’t think that’s it, I don’t think you need one.”  I asked again…”No, you don’t need one. Besides, they are expensive.”  The third time I didn’t ask…”Order me the MRI!”

Two weeks later I received a one-sentence email from her stating that I had an “enlarged Pituitary” and that I needed to go see an Endocrinologist.  I was speechless and had no idea what lie ahead.

Following my Pituitary Tumor and Acromegaly diagnosis, it felt as if my symptoms increased tenfold.  I didn’t leave the house for three months leading up to my surgery because I felt awful.  In January 2019, they took “Bubba”, the tumor, out of my skull through my nostrils.  Following that traumatic invasion, I remained in the ICU for 10 days.  In addition to precious cranial liquid leaking from my nose for weeks, I was left with Diabetes Insipidus, a complication from the damage to the Pituitary gland during surgery, which I deal with to this day.  It causes extreme thirst…and peeing!  I never feel quenched and need to urinate all day and night.  Additionally, I have lost my sense of smell and taste.

Three months later, I learned that a portion of the tumor remains in my Cavernous Sinus and is wrapped around my carotid, inoperable.  I reluctantly conceded to radiation treatment, and one year later I am still trying to get my IGF-1 under control with medication, facing complications and challenges each day.

My outlook on life and my future have been radically rearranged.

Who am I?  I am the same…yet different.

I still grieve pieces of the person I was.

And, I have found profound gifts in my circumstance.

1) I strive to help those going through similar life-altering medical diagnoses.  My personal experience, plus my certification as a Gestalt Practitioner and in MBCT (Mindfulness-Based Cognitive Therapy) makes me uniquely qualified.

2) Where once I was shy, I am now passionately speaking out.  I am on a mission to share my story, to spread awareness to medical professionals and those who are walking around with Pituitary tumors, unaware.  All doctors should have answers to the questions I had, and no patient should have to wait years to find out the truth. If I can help toward the effort of earlier diagnosis, the timing of diagnosis for someone with a Pituitary disease could make all the difference.

3) I have started workshops and creative practices to help others discover peace and calm, which in turn fills me with joy.

4) I have started a movement of living a life unleashed through “Risa Unleashed”. Check out my Facebook page @risaunleashed

5) And, I have not given up on my passion for cycling.  My next adventure with my bike is a ride down the west coast from Canada to Mexico. A 1,845-mile journey with hopes of spreading awareness around rare Pituitary Diseases…to anyone who will listen!  Beyond that, my bike and I plan to tackle the EuroVelo 6 in Europe in 2022.

I want to seize every precious moment of the time I have on this planet by doing things that I love and by being a light to others.  I may not be as fast on my bike, or as full of the energy and spunk I used to have, but compassion and light remain within me, stronger than ever.

Every single day I have a choice as to how to live.  Each morning that my heavy limbs, fatigued body, foggy brain, and achy joints can barely get out of bed, I am granted the gift of a new day.  It’s like each morning I am walking a knife’s edge; on one side is a grey, rocky, steep slope plummeting into a dark, bottomless abyss.  The other side is a gently rolling meadow with velvety green grass, a vast display of colorful wildflowers, and deep blue skies with puffy marshmallow clouds.  And every single day, I consciously choose the Marshmallow clouds.

This doesn’t mean I have to ride my bike 500 miles or climb mountains in the Himalayas anymore.  But I will fill my life with love.

So tell me, how will you live today?

I choose to live life unleashed!

Risa August Heidt

Find me here: www.featherandsagecoaching.com

Photo: Colorado landscape by Marisa August Heidt

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