This is a blog about the Cushing's disease journey. I hope this will help you on your way.
Wednesday, December 12, 2012
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.
Sunday, December 18, 2011
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.
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.
Thursday, November 17, 2011
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
http://vimeo.com/31158841
Thursday, October 27, 2011
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
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
Sunday, September 18, 2011
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/
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/
Friday, September 16, 2011
post call life
Recently, I had dinner with one of my midwife friends and we had a great time catching up and talking about old times. We talked about the beauty and sacredness of birth, we talked about how the beauty and sacredness of birth is frequently not honored in the current reality of medical care. We talked about how hard it was to care for families in this atmosphere. We talked about being on call for days and therefore not sleeping for days, not eating well, not taking good care of ourselves. Today, when I woke up I felt as if I was "post call" my whole body hurts, i'm so tired that deciding what is for breakfast was difficult...can't remember what's in the fridge, open it up and then can't remember if I looked in the fridge or what is in there. Not a driving day. Feeling a lot like I used to "post call", the only diffeerence is that I didn't do anything useful before to warrent post call status. I didn't catch any babies, save any lives, or just make anyone's day better. But, somehow I feel physically tired and emotionally taxed beyond what I can handle. I just want to hole up here in my house, not talk to anyone, or see anyone, and I surely don't want anyone to need anything from me. I want to have a day of self care... sleepy sleep, drink hot tea, eat what nourishes me, read (if I can focus well enough), be quiet, no phone, no TV. So...my thought this morning was this is my life now...everyday "post call" , everyday should be a day of self care. Not because I deserve it from any good deeds, but because we all devserve self love and self care. If I didn't bring some joy to the world wouldn't God have granted me the right to leave this place? So...today, no people, no noise, but tomorrow, self care will involve care of the body, the soul and some of my favorite people. Make a list of things to care well for yourslef when you are having one of these days. write it down and put it somewhere handy (like the inside of the cabinet where the coffee cups are...that way you are sure to see it when you are having one of these days) Do at least one of those self care things everyday. You are worth it. You are loved by yourself and a lot of others too.
Sunday, September 4, 2011
connecting with the past
My friend's mother died recently. I'm getting to the age where this happens with more frequency. Each time a dear one loses a parent I'm hit anew with the possibility that it could happen to me. To remain in this world without the One who has loved you best and absolutely unconditionally for the whole of your life ...I can't imagine how that must feel, the deep loneliness for this person, your mother or father. A part of your very core being has left the planet is what I imagine it feels like. When I was most sick, (as well as every other day of my life,) my parents have been ever present, always I know that I can depend on them if I need for anything...money, whether they have it to spare or not, if I need it then I will have it, random things like paper towels, or a box of taco mix....just when I need it and I have no $ to get it but wouldn't ask unless all the mac and cheese boxes were used up! Always there to help , buying the child a coat every year, when she has outgrown the last one and all the back to school expenses piling up and there are my parents with the new beautiful coat or new shoes or whatever, taking good care of us all, like a personal fairy godmother/godfather. My Dad fixing every house I've ever lived in, and repairing when I leave whatever damage my dogs have done. He doesn't even have a dog but has become a professional in "after the dog repair". For anyone to lose this magic from the planet makes me unbelievably sad.
So this story began with my friend recently losing her mother. Her mother was a magical woman of 90 with much life experience and zest for life that was inspiring for all. She is missed by many but we understand that no one can live forever no matter how loved they are here. It gets uncomfortable here in a body that is old and tired and I would not wish such suffering on anyone. I happened to be out of town when my friends mother died and the funeral occurred. I am not good in crowds, they makes me anxious but even still I wanted to be there with my friend (who also doesn't enjoy a crowd). What could I offer her. This week my friend asked me to repair a pillow that was hand embroidered by her great grandmother for her mother. It is a beautiful work of birds and flowers and inside there was an old tired pillow and then to add some fluff after the pillow got too tired there were panty hose added around the edges and a small tag that said, "made especially for you by Granny". How sweet to have hands on this gift of time and love that has passed down through the generations of my friend. I could feel the loved imbued within this sacred and intimate object. I felt such an honor to repair this pillow and glad there was something I could do, physically do, to honor my friend's mother and their connection and all of our connection to those we love and cherish.
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| My friend at her office |
Melanie and Her Mama
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