It was less than two months to go before my big ride down the Pacific Coast. Gosh, this ride meant so much more to me than just getting on my bike and conquering 1845 miles in six weeks. I was seeking solitude and healing, soul-searching and exploration. It was the last piece of my Memoir. It was to bring major awareness to rare Pituitary diseases. It was a necessary escape for me. It was my comeback from a 2018 diagnosis.
Alas, it was time to make the call to cancel the trip. There would be too much uncertainty around the route and what to expect, and not just with Covid, but with my current health.
I went from training as hard as I could, anticipating enlightenment, and open to new possibilities to "Now what?!" and a feeling of loss and being lost.
I crawled into my closet and sobbed for 55 minutes. I allowed the tears to drench my face and my t-shirt. There are worse things, I know this. But for this moment of time, I allowed myself to feel shattered. What am I without these goals, without a mission, without direction? More importantly, who am I?
I quickly shifted gears. If I wanted to survive this blow, I had to find something new to focus on, something else that I am passionate about, something else that feels filling and meaningful to me. I turned to creativity. Immersing myself in creativity has been transformative for me. Why not offer this opportunity to others? This is where you'll find my workshop creation around Voice and Story; finding ones Voice to share their gift in words to the world, a story worth being heard. Along with my workshop, I create Voice and Story sticks which are personalized symbols for those finding their voice and courage to share what they hold meaningful and valuable with the world.
Although, you won't be finding me pedaling down the Pacific Coast this Fall, I will still be on my bike and shifting gears to stay in the positive lane. Stay tuned as I continue on the road to Riding for Rare Disease. And CLICK HERE to learn more about my Voice and Story sticks and workshop.
It has been too long since my last blog post. Actually, I write quite often; articles, working on my memoir, in my journal, but when it comes to blog posts, for some reason I struggle with inspiration and feeling like it needs to be perfect. Well, I can guarantee that it won't be perfect, but it WILL be authentic.
Recently, after participating in a mindfulness meditation course, I enrolled in a Mindfulness Based Cognitive Therapy (MBCT) Certification Course. It has truly opened up new awarenesses for me around being in the present moment. Why does it matter if one lives in the present moment you ask? Well, I s'pose it really doesn't. However, if I am focused on what I am doing in the here and now, I can't be focusing on my past nor my future Thus, any thoughts or emotions from the past or future simply are not there.
This offers me reprieve from what can often be torturous thoughts and emotions around things I have no control over...it's a gift to myself.
From someone who wants to do everything prefect and correctly the first time (like my blog posts), I am quickly learning that my way of mindfulness for me IS correct and perfect...just as someone else's way of being mindful is perfectly correct for them. There is no way you can get it right or wrong, it just is.
I challenge you to set a timer for 3 minutes and focus on one thing completely. For me, focusing on a tangible object was a good place to start. Utilizing my senses to experience it, before I knew it (or didn't know it) I spent three minutes completely focused in the present moment. I had no worries about my week ahead and I had no stress about things from my past that I could not change.
Now your turn, give it a try.
This morning I had a major lesson in how valuable it can be to adjust my mindset. About a month ago, my husband and I learned that our insurance premium was going way up. We also came to realize that I needed a better insurance plan with my diagnosis. Financially, it made sense to switch plans which meant switching companies. Switching to a new network of doctors made me nervous emotionally, but staying with my current team made me nervous financially. I had to weigh the stressors.
The 15th was closing in and after much deliberation, we made our decision to proceed with the new insurance plan. I stayed positive and hopeful that maybe I'd find some new really great doctors.
However, it wasn't until yesterday afternoon that the immensity of my situation hit me like a ton of bricks with the addition of two giant pink elephants. Along with a Primary Care Physician, I need anywhere from 5-7 Specialists on my team. I began my search and calling around. Instead of my doctors all being in one place, I now had to search the greater Denver area and piece together a team. With being so scattered, I fear they won't communicate as necessary? I had to contact my existing doctors to get urgent referrals, have them make phone calls so that the new doctors know the urgency of my situation. After many phone calls, numerous emails, and buckets of tears, I put it down for the evening feeling defeated and hopeless.
This morning when the alarm went off *BOOM* there it was again, the reality of my situation bearing down on me. I decided in the moment that I was going to pay the extra money and stay with my current network of doctors, it was just too much to think about accomplishing otherwise.
And then, like someone dropping in out of the blue or an unexpected package, it hit me...
This is what I asked for. This is what I want(ed). This IS my mission. In the depths of my gut, and in the chambers of my heart, I want to spread awareness to the public and to the medical field around rare Pituitary diseases. Furthermore, as a Gestalt Practitioner I want to support others through life-altering health diagnosis and I will better do this by going through the highs and lows that I face.
This is exactly what I will get to do with all of these new doctors, spread my knowledge and awareness with them. It won't be easy, it may get frustrating, buuuuut, I may save another patient's life, I may be the reason they get diagnosed much earlier!
Once I had this epiphany, I was able to change my entire mindset, and now I can begin to accept the changes and challenges that lie ahead of me.
It is difficult to sum up in detail the challenges I have faced over the past year. I clearly remember December 2018 and the excruciating head pain I was enduring while impatiently awaiting my January brain surgery. I was certain that the removal of my macroadenoma would bring me new life, new energy, and a whole new outlook. Well, it certainly did just that, but not in a way I ever imagined. My new life comes with medications, endless doctor appointments, and a multitude of side effects and symptoms. My new energy is the lack of it and the struggle to get my body out of bed each day.
But, here is where it shifts, my new outlook has provided me with determination, motivation, and a sense of urgency. The determination to keep moving forward in a purposeful way, to live more fully and authentically. My motivation is in helping others move through their pain, traumas, challenges, and transitions, to offer support and guidance in times of questioning and uncertainty. My sense of urgency is due to the realization that life is NOW, right now!
As you reflect back on this past year, what new outlook might it offer you for the year ahead? Where will you find your determination? Your motivation? How might you live your life more fully, more authentically...right now?!
In October 2018, I was diagnosed with a Pituitary Tumor which is causing a rare disease called Acromegaly. I had been feeling sick for so long that it was somewhat of a relief to have an answer as to why. Acromegaly wreaks havoc on the body and is life threatening if left untreated or uncontrolled. It comes with a multitude of symptoms.
In January 2019 I had surgery to have the tumor removed leaving me without an ability to smell or taste. In addition, the surgery damaged my Pituitary gland causing yet another complication called Diabetes Insipidus. Don't be fooled by the name, this isn't the same as the blood sugar related illness, but alas, it causes daily symptoms and discomfort that can be dangerous, and that I will deal with for the remainder of my life.
In April 2019, I learned that more tumor remained and is inoperable. I was highly encouraged to move forward with six weeks of radiation treatment...reluctantly I did.
Present day, my Endocrinologist and I are still trying to get the Acromegaly under control. I face my symptoms on a daily basis, as I never quite know what I am going to get. Some days I almost feel "normal", but many days the fatigue, pain, and discomfort are a given.
What I have determined since my diagnosis, is that life is too uncertain to not live it to the fullest. It is time to stop stressing about what I can't do and start taking action on all of the amazing things I can do. No longer will I hold back from opportunity and possibilities, I want to embrace every bit that comes my way. So I ask myself every day, "What can I do today to be a positive impact on the world? What can I do to help others?".
No more holding back, no more wasting time... this is Risa Unleashed.
Check out my mission here at Risa Rides For Rare Disease