Wednesday, April 6, 2016

It's Cushing's and Adrenal Insufficiency Awareness Month!

Day 1: It's Cushing's and Adrenal Insufficiency Awareness Month

772,998 page views.

2016 not 2015. Mistake from a Cushie Mind.

I can easily say that when I started this blog eight years ago that I had no idea how far my typed words would go. At the time, it was my little place to put down my knowledge about a disease that plagued me but also a space to share my frustration when I didn't have anywhere else to put it.

I look back at the 510 posts I have made, and I have mixed emotions.
I stand proud that I have a collection of myself that I can share with all of those who seek understanding and assistance tackling a monster of a disease as well as a medical community that claims to have never encountered that beast before.

I am happy that my work has helped so many people that my eyes overfill with joy when an email (moxiemelissa atsign gmail dot com) comes through thanking me for maintaining this blog and saving a life.

I feel accomplished that I put so much work into a blog even when I wasn't feeling well. I posted many times from my iphone because sitting upright hurt my back and joints too much. I often lost sleep and time with my family so that I put up content in an never-sufficient-effort to save people from this destructive disease. I felt a huge responsibility to keep posting. 

Among these many posts, I can't help but notice all that I didn't say. I see gaping holes of my life story that I never posted here.  

  • I was too sick to type.
  • I was too disappointed to share.
  • I was not with it enough to formulate sentences and cognitively too confused to make sense of lab results and doctors appointments.
  • I didn't know what to do to cure this disease or even help myself. Many times, I was just too hopeless to share. 

Putting the disappointment I was facing right here on this page was so overwhelming that I just couldn't do it. If I wrote it down, it would really be as bad as it was when it all swirled around my mind.  In those times, I remained silent. My social anxiety heightened, and I clammed up. I tried to scrape together a life with whatever leftover energy I had left after the grueling fatigue -- I can assure you that there wasn't much left. I would try to forget Cushing's and I got caught up with the daily rhythm of school for my child, work for my husband, cleaning and cooking and sleeping. Every day I knew that anything expected of me other than sleeping was too much for me to handle.  Cleaning and cooking just never seemed to happen. Cushing's rang in my ears, literally, thanks tinnitus common with pituitary tumors, and reminded me every day what I had and what I tried to escape. Endless doctor appointments, scans, lab work, and daily medicine never let me forget that I was in the middle of a war against my own body.


This isn't the most uplifting start to a month of awareness, but it's a start nonetheless.

My goal simply is to finish the awareness challenge, because there were years in the past when I just couldn't. I have no idea what I will articles, opinions, or stories I will share in the coming 30 days. I hope you stick around to see what happens!