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
12/18/2019 01:17:01 am
Hi Risa...my heart goes out to you in your pituitary situation! I give you high grades for choosing radiation. That’s one almost impossible decision to make. I have a reoccurring benign pituitary tumor that is being operated on for the 3rd time in 6 years & the 2nd time in 2 years. My surgery is Jan 9 in which my surgeon this time has to not only go up my nose as usual but into my skull as well which to be honest is scary for me. I’ve chosen not to have radiation which is common on one’s 3rd surgery. I just refuse to make that decision. I’d rather have continuous follow up surgeries. Upon discovering this 3rd tumor, I’m approaching it with as many natural remedies as possible which seems to be working. There has been no growth over a 4 month period. But I’ve got to have surgery because my tumor is imbedded in my Sela bone, encased in my right optic nerve & dangerously close to my carotid artery. After surgery my hope is to prevent it from growing back by using these natural modalities that have been working so far.
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This is about navigating through the uncertainties that living with a rare disease brings, and stepping into living a life more fully...