Tuesday, March 24, 2009

Chocolate harvests believed to be particularly special might be deemed grand cru, a term borrowed from winemakers.
March 24

Today would of been my mother's 89th birthday. She was a wonderful lady. She must of been a big believer in "if you can't say something nice, don't say anything," as I seldom (if ever?) heard her say anything bad about anyone.

As a child she kept my world centered, she was just always there. As a teenager, well, what can I say, she was my mother and not too bright!! As a young single girl away from home she was who I called to feel connected to the family. As a young mother she was who I called for advice or just to talk. And to her credit she never told me that my kids were my payback!!
She died of a stroke when my kids were young. Jess was barely over a year old. While I know she didn't really understand what was going on, she did on some level. She had just started "talking" to a photo of my parents that hung in our dining room. When Mom died she quit talking to it. I also noticed at church Jess would gravitate to women with hair and style of dress similar to Mom's.

Justin was five and he missed my mom a lot. He wanted to stay home every day and not go to daycare. He was also pretty insightful. The night of the day she died, when we arrived at the house, Justin looked around right before we went in the door and said "Who has the instructions for Grandma's house?" I guess he knew who kept track of things in the house.
A few days after the funeral, he was watching me very closely, finally he said "I think it's harder to lose your mother than your grandmother."

Debbie from Dr. Chiang's office called me today to let me know that he is reviewing the kids' files and will call me on Thursday. So, today I came up with something new to worry about - what if he doesn't think they are good candidates for a BLA? I'm guessing I'll always have something to worry about with this disease. It seems pretty all consuming.

Today I talked with a friend who has a daughter close to Jess' age. We have off and on discussed whether her daughter possibly has Cushing's. I kind of think so but I could be wrong. She's started seeing some local doctors and so far has heard metabolic syndrome and adrenal fatigue. She calls me and asks me what I think. She is taking her daughter to an endo soon. Bill & I have been to see him and I wasn't impressed at all. But someone else may have better luck. I hope so.

We just watched The Boy in the Striped Pajamas. I gave Justin the book a couple of years ago. He really likes anything about WWII. It's a very gripping and sad story. It truly brings home how awful things were.

Incidentally, just last week I was scanning a sack of photos for a customer. She had told me they belonged to her father-in-law and some were taken during the war. She said that he had helped liberate a (more than one?) concentration camp. I've printed a lot of old negatives that were taken during WWII. But none like these. Let me just say that holding a B&W photo in your hand is so different than seeing the same kind of image in a book. It makes it so much more real when someone whose name you know has photos of those horrifying scenes. Absolutely awful.


Anonymous said...

Long story, but I accidently deleted this comment,so am trying to put it back!

ReadyGo said...

I hope you get some answers soon, it seems like everyone who deals with this disease is in a constant waiting game. No matter what stage your in. I really hope they come back and go ahead with the surgery.

I wanted to ask you about Dr. Friedman. I have an appointment for next Wednesday and I'm not really sure what it's going to look like. I know I need to get another MRI because mine was done on a 1.5 T machine, but other than that I have no idea what to expect. Will I have time to do anything else other than testing? Do I need to stay until Sunday or is Saturday fine? Should someone come with me or am I ok to go alone? I looked on cushings-help but I couldn't find much on the details of the trip. Anything you could provide me with I'd really appreciate. You've been so helpful already. Thank you!


judycolby said...

If you have more questions than I get answered, email me jkennedy265@hotmail.com
Has Lynne got your MRI set up? I think Cedars now has a 3T machine and there is one in Torrance, although we never went there.
We went home on Saturday. Depending on what time your appointment is, you will have some blood work done that night,either before or after you see Dr. F. One is to be a midnight serum, so you will need to be there about midnight your time.
Try to remember a tape recorder, especially if you go alone. He can talk pretty fast and sometimes it's hard to remember everything he said. Of course it helps if you turn in on! I forgot.
I think he usually also orders a UFC and some 8 a.m. bloodwork.
You should have time to do some things while there, partly that would depend on when your MRI is. I think we had them on Friday so had all day Thursday free.
Ask, if you have any more questions.

Hi, I'm Rene said...

Your tribute to your mother really touched me. I lost my mom when my kids were 5 and 7. I feel very much the same way. I sure wish she was around to support me and bounce ideas off of while fighting the Cushing's battle.