Wednesday, April 1, 2015

Day 1: Cushing's Awareness Month Bloggers Challenge


Cushing's Awareness Month:
Bloggers Challenge
Day 1

Here we are again on April 1st. I join my fellow Cushies in blogging for the 30 days of April in an effort to bring awareness to our disease, Cushing's.

On March 28, 2007, I first saw the word Cushing's while researching thyroid doctors in San Antonio, Texas. Within minutes, I knew the word applied to me. I diagnosed myself with a rare disease on the Internet. I could hardly believe it, and none of the doctors believed it.

These past eight years have been filled with some of the darkest moments of my life. At the time, I wondered if I could make it through the next five minutes. Somehow, I endured the medical challenges before me. I faced disappointment and delay. I have been dismissed and dismayed. I have been tenacious and stubborn in fighting for myself, for what is right.

I admit to being stubborn, refusing to give up the fight when I know the fight is important.

Recently, I have learned to make peace with my disease. No matter what anyone says, you don't get ill and make peace immediately. Peace and uncertainty don't mix. You can't face devastation and immediately say, "Oh well. I guess this is my new normal, and it stinks. There is nothing I can do about it." No no no. That is settling for less than you deserve.

Peace comes with accepting the dire consequences of your disease, facing and befriending death as well as life, and still choosing to walk that line every day with a full heart and the stubbornness that won't let you give up or let Cushing's win.

I strive for peace.

I am 15 months post op BLA, or bilateral adrenalectomy for those with a lot of time on their hands for extra words. 

Another year has gone by. Cortisol is as much a part of my life as ever. Instead of cursing pituitary tumors for high cortisol, I scramble to take my cortisol medicine replacements three times a day. The irony is not lost on me. 

In the coming days, I will tell you more about my life after BLA, and how I navigate this stressful world with no adrenal glands. It's not easy (hint: I take a lot of naps).

I hope that you will stay tuned and learn a little more about the nuances of these cortisol-based diseases of Cushing's (too much) and Addison's (zero). In order to survive, I must understand both.

Sincerely,
Melissa

Cushing's warrior and advocate. 
Pituitary surgery for Cushing's in 06/2009 unsuccessful. 
Pit surgery for Cushing's in 04/2011 unsuccessful. 
Took ketoconazole and suffered through adrenal insufficiency for 14 months. Drug banned in European Union. I stopped postponing my life and chose to get rid of high cortisol.
BLA 12/31/2013 successful. 
I'm fighting to get my life back, and I will win.