Cushing'a awareness Month day 2

Actually day 3 but I missed the first one.
today, I'm going to talk about the emotional changes that have occurred.  I'm tired today, really tired.  I went out of town for Easter and I'm still recovering.  When I'm tired I'm a little labile emotionally.  I cry if I spill my water or if I've run out of coffee or if I'm not quite sure what day it is.  Tired makes everything harder and me more likely to cry.  I'm also grouchy and a bit unpredictable.  Like today, just playing really my daughter was driving me to meet friends (too tired to drive) and I poured a little water on her arm.  Why?  I don't know it seemed like a good idea, but really??? you shouldn't distract the driver.  I tell my daughter this, but the tired person I was...she doesn't listen to reason.  That is so embarrassing, and I can't believe I'm writing it down, but there it is, the ugly truth.  I guess I want you to understand that "tired" doesn't mean the same thing for me as it does for you. People will actually say, "oh your just tired, ...I'm so tired, I wish I could be disabled awhile.  It would be nice to lay in the bed."  I know they are just trying to make me feel better or perhaps they are a little jealous of my quiet time.  I would give anything, anything at all to participate more in the world as others do.
I cry like a 4 year old cries, when tired or hungry, or frustrated, or sometimes like a grown up grieving for the losses.  I take an antidepressant to help with the emotional ups and downs, but that middle part of my brain, the hypothalamus area that helps in judgement and emotions, that was in the path of the radiation, and was perhaps damaged by that a bit.  The doctors get all weird when you suggest that the treatment causes a problem.  Really!!  It's not like I would rather have Cushing's and I know that nothing comes without side effects.  About 2 years after radiation I had a neuro-psych evaluation and they gave me a lot of tests all day.  It was cool in a way to see all my brain problems mapped out exactly where the radiation and surgeries happened (arguably also where the tiny tumor lay).  It made it seem more real to me, I wasn't making this up.  My brain didn't work in these exact spots, all the tests showed it.  I felt like it wasn't that I didn't try hard enough, do my brain games enough, try to focus.  It was just fact.  I cried of course because i was disappointed that this is it.

life is still fun

Cushing's Awareness Month

Hello Friends and Neighbors,
This is Cushing's Awarness Month and the Cushing's self help Organization has challenged us all to blog something everyday in the month of April related to Cushing's.  I tried yesterday but somehow I accidentally created a new blog and erased it a couple of times.  So anyway, this will be today's topic...Cushing's messes up your brain!
  So I would like to start by saying how I loved my brain before Cushing's.  I was proud of it!  I could work for days as a nurse-midwife and still make good decisions in the middle of the night with little sleep and only little tubs of peanut butter and graham crackers for nutrition (oh and coffee).  I read scientific journals and kept notes about what I read.  In school, I could read something once and that was all that was required.  My ranking in school was always close to the top...in high school, in college and even grad school.  Now, well I just finished a book that I didn't figure out that I had read before until about halfway through.  I was actually so thrilled when I found the book in Underground books because I thought it was the only book by Lousie Erdrich that I had not read!  I was wrong but I enjoyed it the second time too or it could have been the third time...who knows?  I've started writing a list of what I've read so this doesn't happen as often.

I had Cushing's Disease from a pituitary microadenoma.  The pituitary is located in the middle of the brain and is the Boss of all things hormonal.  So...when it is not working properly ain't nothing right!  The tumor made a hormone that tells the adrenal glands to make more cortisol, I said "MAKE MORE CORTISOL!"  this is the fight or flight hormone....basically steroids.  It is the huge and constant production of cortisol that takes toll on your body and brain.  Muscle atrophy, high blood pressure, congestive heart failure, osteoporosis, diabetes, big belly (central obesity), skin changes, loss of short term memory, early menopause, thyroid dysfunction, depression, extreme fatigue, the list is huge and ridiculous.  Luckily I can't remember everything.
 We are going to focus on what the Doctors call, "cognitive changes".  This means you can't think.  This was the reason I quit working both times.  My job was dependent on quick thinking and decision making.  It is important to be "on top on your game" when delivering health care of any kind and especially the fast pace world of baby catching.  It was my calling, my life work to provide excellent care to women and babies at this important time in their lives.  When I realised their was a problem with my thinking I stopped working.  The first time, I realised my brain wasn't working when the endocrinologist gave me three words to remember and then asked me later in our visit what those words were.  I honestly didn't remember he had told me any words.  My friend who was with me started crying because obviously she remembered the words.  I called my office on the way home and told them I wasn't coming back to work until after my surgery.  Six weeks after surgery, I was still super fatigued and I only worked part time but my brain was back and I was thrilled.  I worked for three more years.  When the Cushing's recurred, I knew way before the tests showed that it was back.  I  decreased my hours because of the fatigue, I got to work early to take a nap before work , napped at lunch, and again before i could drive home.  One day, despite all my efforts, I had to look up a medication I gave daily like three times, and I struggled to remember even how to look it up at the end of the day.  I went to my primary care the next morning before work, and told her what happened and that I needed to apply for disability even before my next surgery.  She agreed and I didn't work again.  That was August 31, 2006.  A day doesn't go by that I don't mourn the loss of my career, experiencing the joy of brand new parents as they meet their baby the first time, the miracle of birth, caring for people in a real and meaningful way   I hated to leave but I couldn't risk not being on top of my game.
I had a surgery in 2003 to remove the tumor from my brain and another surgery in 2006 to remove 1/2 of my pituitary in hopes of getting all the tumor that was so small it was no longer visible but I was terribly sick.  The second surgery didn't work, so I had one day of very high dose radiation to the pituitary and surrounding areas in 2007.  This worked and the Cushing's is in remission even today!  I will always have this brain dysfunction.  They say you will get the most recovery of brain function in the first two years.  I did a lot of sudoku, when I couldn't read, I had picture books, then I moved up to kid books, then teen, and finally adult books again, but I can't always remember what I read.  When I get tired it's worse.  I don't drive after dark because I can't pay attention  or even after 6 really.  I can't have the radio on and do anything else.  I make a lot of lists and reminders on the door before I walk out.  I have a lot of help.  I'm not who I was, but I'm happy to be here and grateful to no longer have Cushing's.