A thief named Cushing's

I was trying to think of another topic to blog today, and coming up blank.  So I decided to look at a list that was made a while back of suggested topics from last year: http://cushie-blogger.blogspot.com/2013/03/cushings-awareness-blogging-challenge.html

One of them DID jump out to me this time:  "What three things has Cushing's stolen from you? What do you miss the most? What can you do in your Cushing's life to still achieve any of those goals? What new goals did Cushing's bring to you?"

Here comes the introspection...

1.  My ability to think clearly and remember well.  I consider myself a "jack of all trades, master of none."  I've loved my ability to do whatever I set my mind to.  To be able to easily learn whatever interests me and quickly become proficient and knowledgeable in that area.  It used to be that I'd watch a tv show, see a performance, or learn of a profession and think to myself, "Huh...that's kind of fun.  I could do that!"  I still say that in my head, but I have to remind myself now that I no longer have those options.  I can barely read a book.  I can no longer sift through complicated medical studies and come out well informed.  I can't remember names or phone numbers long enough to switch from one screen to the next.  I can at one minute use a big, unusual word like crenellations and yet not be able to come up with the word "kitchen" the next.  I used to be able to just sit in a college lecture and get a good grade without doing homework or every opening the text book.  I used to be really good at remembering information.  I was even really good at imitation --able to learn skills with ease by closely watching someone else do it well.  In every new thing I tried (karate, violin, tap dance, acting, art, philosophy, counseling/clinical psychology, emergency medicine, new languages, home construction/design, interval running, teaching, religious studies, sewing, goat midwifery, cooking, writing, etc, etc) I would always be told "Wow, you've got natural ability!"  Or "Are you sure you've never done this before?"  And everyone always told me I was "meant" to do whatever it was I was trying out at that time.  It made it (makes it?) almost impossible to know what my true passions or true talents might be, but I could rest assured that I would be able to master whatever skill I found necessary.  I still wish I could do many things and try many things, but it is almost hurtful to read all the inspirational posters and memes that say things like "Follow your dreams," "Make 'someday' today," or "Tomorrow starts today."  No, my tomorrow has to start tomorrow...when, someday, I get a cure and will hopefully mostly-recover from this disease that enslaves my mind and body.  Today, all I can do is survive and try to do so in the best way I can.

2.  My ability to just push through and make things happen.  I was so used to this.  I'd just push myself if/when needed and it wasn't a big deal.  That's normal, right?  Need to stay up till 3am to finish those dresses I sewed for my daughters' baptisms?  No problem.  Need to lift a 90lb bale of hay?  I've got this!  Need to chase a 2 year old through the house bent on making a mess of anything she touches?  That's just motherhood!  Dip 10 pounds of strawberries in chocolate for a luncheon?  YES!  Homeschool children during the day, sing and tap dance in a musical at night all while 20 weeks pregnant?  Sounds like a blast!  No more.  I lost this ability gradually over many, many years of worsening illness, but I still miss it a lot.  It irks me to no end when people treat me like I'm just lazy.  They obviously haven't taken the time to get to know me now (or never knew me before I was ill).  I made myself horribly sick when my illness started to really, noticeably progress because I was used to being able to push myself.  And when I did, I could rest up and in a day or two be back to normal.  Suddenly that was no longer the case (It did gradually worsen, but I think my awareness of the drastic change was sudden).  I would often run the primary alone while one counselor was out of town and the president was away with her husband for months treating his cancer.  2-3 hours of steady work in charge of 60+ kids (and their teachers).  I'd just push through it, but that became literally all I could do for the entire week.  Cooking, cleaning, nope.  Everyone assumed that because I looked like the normal me (albeit increasingly heavier and balder) that I must be fine...even when I explained I wasn't and that Sunday's effort stole from the rest of the week.  I started to hit a point where if I overdid it when I was tired (in a cortisol low cycle, especially), I would hit a new baseline "low" energy level and never recover.  NEVER recover.  Doing more, pushing myself DOES NOT increased my energy or stamina.  I miss "doing" everything and anything.  Really, I do.  I am glad I have an outlet for my creativity and for connection to others with the internet, but I miss "real life" more than I can express.

3.  Cushing's has completely stolen my sense of self.  Honestly, I don't know that I had this to begin with, so maybe I haven't lost it...So perhaps it has kept me from knowing my "true" self.  This is something I've spoken of before.  I even asked on facebook for what people think constitutes them.  (Er, however you'd say it.)  If your emotions are mostly dictated by hormone fluctuations, it can't be that.  If your thoughts are greatly effected by them...your choices, your physical body and physical as well as mental ability...your relationships, etc.  What part of "you" is "you?"  Many people with Cushing's remember a time before their Cushing's hit.  I hear some form of "I miss my old self" or "I want to get back to being me" at least once a week, maybe once a day.  I do technically remember a time pre-Cushing's, but it was in my pre-teen and early teen years...my formative years.  I have no idea what I would be like as an adult without Cushing's.  None.  Will my preferences change?  My reactions to others?  My interests and abilities?  Will I have friends again?  It sounds weird, but it's true.  I don't know who I am.  I know I have worth, and I have good values, but what will change when I am in remission?  I have no idea.  Still, I have faith it'll be better than where I am now, and I yearn for it.  Heck, I'm willing to have multiple brain surgeries or remove some exceedingly vital organs and live life fully dependent on medications for the chance to find out.