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.

birth remembered

Last night I had a beautiful dream of remembering.  This happens from time to time, I remember running like I used to years ago... feeling my legs work so well and so fast, the wind rushing through my hair.  It feels so real that maybe I should count it as exercise...that kind of remembering.  Last night's dream was that real, not just a mind exercise but a body and a heart remembering.  I delivered a baby last night, in my dream.  I felt the baby's sweet head gently push through into my hands, my hands remembering just what to do and then quick the shoulders and the rest of the tiny screaming pink newborn.  I could feel the joy of the parents as they wept a welcome to their baby I handed to them not 10 seconds old. I felt my heart broken open at the beauty of it all.  I woke up crying, sobbing actually when I realized I was not in the call room having actually experienced that birth, but rather in my own bed.  I felt sadness about the loss all over again, but mostly I felt such gratitude!  Gratitude for the dream of remembering so beautifully with my heart and hands the warmth of new life.  Gratitude for the over 800 times I was priveledged to be present for a new person coming in.  Gratitude to all those Women and men who trusted me to be there with them at that most precious and intimate time as the birth of their child.  Gratitude that at age 24, I was back in graduate school because I just couldn't wait to catch some babies. Life comes fast, so I need to remember to live everyday and get the good important work done, for tomorrow the assigment could be very different.  I don't want to miss today.  I feel embarassed sometimes because I run into folks that I delivered and I don't remember their name, because I don't remember stuff.  If you are one of those people know that my heart remembers and I thank you for the gift of being present for your birth, for it changed who I am.

years of magical thinking

I just read Joan Didion's biography entitled The Year of Magical Thinking.    It was so real, and raw about losing her spouse of forty years and her "pathological" grieving.  Pathological because she had irrational thoughts that he would come back.  She couldn't give his shoes away because he would need them, or like when she didn't want to do the obituary, because then he would be dead....Maybe in California he wasn't dead yet because he died in New York....and there is that time difference.  About midway through the book I had an ah-ha moment when I realized that this was me.  Except, I'm slow and have had years of pathological grieving of the old (pre-cushing's) Jamie.  That girl from before is really gone for good and no amount of keeping up with the medical journal articles on line, or yoga, or sudoku can bring her back.  I finally threw out my 6 White lab coats last year and let my midwifery license lapse.  This was actually a hard thing to do even though I haven't worked since 2006.  I had a little ceremony with my closest peeps to bury that old Jamie, maybe 2 years ago and that really helped but somehow, occasionally, I still long for her return.  I went to my old office the other day and everyone was glad to see me it seemed.  They all said I looked great and wanted to know if I was working.  It still breaks my heart that I can't do what I loved, or even anything that is worthy or valuable in the eyes of the world.  But somehow it is comforting to know that there was a time when I was useful to people.
I woke this morning realizing that this blog, with the intention to help others on their journey, perhaps was just for me.  To help me work through all this a realize that my "new life" is here to stay and that other one I must leave behind.  I see me as the mother elephant, walking around and around her dead infant, waiting for them to get up and join them again, until the stench makes it obvious even to the grieving mother that she should move on.  so..my friends I finally get it!  Moving on, again.  I hope not to have to circle around again.  I'm looking for meaning in this life after Cushing's.  I'm going to leave this blog here , in case some of the information is helpful, and if you would like to contact me my email is jamie.claygoddess@gmail.com.  I'll be around, living this life to the fullest as it is, but I will always have time to connect with you and help you on your journey as so many have helped me.  Wishing you Peace.

Murmuration

This is a link to an amazing little clip of a collection of starlings live and up close!  Everything makes me cry, and this virtual connection to nature of course made me cry.  such beauty in the world everyday....sometimes it is hard to remember if you listen to the news (I can't possibly watch the news and sleep!!  listening is hard enough.)  Enjoy!

http://vimeo.com/31158841

pituitary group

Hey,
All you fellow sufferers of pituitary illnesses,  My endocrinologist (pituitary specialist, neuro-endocrinologist) Dr Ioachimescu at Emory University is willing to sponsor a "support group" once or twice a year where we could have a speaker come talk about whatever we want related to pituitary stuff.  I am interested in cognitive changes associated with Cushing's disease, or a nutritionist to come and talk about how to manage weight loss with our endocrine deficits, or recover diet to gain muscle mass again, maybe physical therapist, or dealing with depression,,,oh so many options, even helping our families deal with us!   I need your ideas and suggestions.  Email me at jamie.claygoddess@gmail.com
i want to know:
1) what you want to talk about
2) when is a good time for you
3) how can I contact you to let you know when this is happening (no worries after Christmas)

PS If you live anywhere close to Atlanta and you have a pituitary issue, this Doc is for you.  I can't adequately express my appreciation for her expertise and throughness.  I have lived through endocrinologists that might know how to diagnose Cushing's but don't have a clue to do with you after the first surgery. Dr Ioachimescu gives caring and comprehensive care, even colaberates with my other doctors!  Amazing!  Dr Oyesiku, world famous neurosurgeon, specializing in pituitary as well is right there in the same office!  this is BEST!!!! 
here's their info
Adriana Ioachimescu, MD,PhD(neuroendocrinologist)
Dr Nelson Oyesiku MD, PhD (neurosurgeon)
1365 Clifton Road NE Auite B 2200
Atlanta, Ga 30322
 (404) 778-5770  

shortcuts to organized life

As you may know, Borders Bookstore went out of business.  This is a sad day for me because going to the bookstore has always been one of my favorite "date night" activities and now the library is closed more often also...so I feel the slow demise of books as I have treasured them.  Yes! I love my kindle (although right this minute it is MIA and I feel a little frantic about that) but books I treasure...something tangible and delightful. 

I digress...one of the good deals I got was a calendar so to speak called Totally Together by Stephanie O'Dea.  I adore it.  It gives you seven simple things to do each day to keep your house in order and then little hints to do each week.  This week, clean the ceiling fans.  That's it!  One simple little thing to do and then check off!  Even I can do this!  It's perfect for me small attainable goals that I can check off!  I think it would be perfect for anyone who is busy living their life and can't have all those things swimming around in your head all the time...schedule orthodontist appts,fold 14 loads of laundry, get the dog groomed, buy Christmas gifts, pay the bills,   all those things swimming around making me crazy.  This book puts it all in one place for me to check off.  Even menu planning!  Get one for yourself.
+make your beds right away
+do one complete load of laundry a day (this means start to in the drawers)
+empty all the garbage cans
+keep the kitchen sink empty
+Clean up after yourself right away (and encourage the kids and spouse to do the same)
+wipe the bathrooms down (don't let soap scum have time to settle...you don't even have to use cleaner for the daily wipe down)
+ten minute clean up before bed (set the timer...race with the kids...you will be amazed) 
http://totallytogetherjournal.com/author/stephanie/