My New Normal

By Desiree, AL Amyloidosis, United States, March 3, 2020

Dr. Dez

Bombshell!!!!! I was in for a shock of my life. I did not see this coming by a long shot. Something that I had no control over. A life changing moment. Sitting in the doctor’s office, waiting for the test results. The doctor came in and my mind went into a whirlwind. Is she really talking to me??? Is there someone else in the room? There must be someone else in the room other than me. Not me, definitely not me.

When I reflect on my illness, I believe it all started sometime in 2017. My husband thinks my illness escalated after a road trip that we took to see our son in Louisiana in September 2018. Prior to my diagnosis, I had several emergency room visits that resulted in six observation stays and one admission to the hospital for shortness of breath and chest pain. During this timeframe, it included several visits to various doctors (pulmonologist, gastroenterologist, three cardiologists, and primary care) and numerous medical test which all came back negative. After a breast biopsy in June of 2018, I was diagnosed with a rare disease called Amyloidosis. I was immediately sent to a hematologist/oncologist who reconfirmed my diagnosis. Upon diagnosis, I started receiving chemotherapy/immunotherapy which I continue to receive to this day. I call this my new normal.

I went to sleep one day and woke up with a rare disease called AL Amyloidosis. I cannot do anything about it except to fight it with every fiber of my being. I am now in a class of individuals that have experienced a new normal. One day everything was fine and the next day everything changed. You never really think of permanent life changing events until it happens to you. My life as I know it was never going to be the same again.My new normal is living with Amyloidosis as a constant companion. Every day I fight the good fight of faith,knowing that God will see me through.

 

*Find others with Amyloidosis on RareConnect, the online platform for people affected by rare diseases

Share this

Share your photos, videos and your experiences!

Be part of Rare Disease Day by sharing your story with others and sending a message of solidarity! You can write about your story and also submit photos or a video testimonial.
X

Share your story




(To find the english name and more information about your disease, click here). Start typing the English name of your disease. Please choose from the suggestions that appear. If your disease is undiagnosed please write ‘undiagnosed’, or if you would like to list multiple diseases, please type in a list separated by commas.