Wednesday, April 10, 2013

New Schedule

Bad news. I had an aura on Monday. I hadn't been sleeping well and as you know I woke to Emma pooping all over the house, I went into frantic clean mode and started a pot of tea. One thing led to another and before I knew it I was cleaning, taking care of bills, and running around the house like I was on crack (not that I've used crack, but I have seen a few eye opening movies). I drank four cups of black tea, and since I've been on my 600 calorie fast, my body was not capable of dealing with the caffeine, lack of sleep, and lack of food. Silly me. Luckily, since it was 6:30 pm Dan was home. We calmed me down (I could not use my right arm at all), then Dan scooped me into his arms, carried me up to bed, and tucked me in. He placed my eye covers on and my Bose headphones over my ears, slipped half of a muscle relaxer in my mouth (at my request - a goodie from surgery), I swallowed and continued to sleep for the next 14 hours.

I now have a new schedule. I am in bed by 8:00 pm (although the past two nights it has been 7:00 pm), and it is lights out at 9:00 pm. If I can't sleep, I play what I like to call the Alphabet Game. I use the alphabet and start with the letter A and I let the name of a person come into my mind and I think about him or her and I hope things for them. An example: Annie. I hope that Annie has had a wonderful day, that she's being smothered with kisses by her two precious little daughters. I hope that Annie feels loved, and valued, and that she feels completely content in this moment. It's a really fun game to play :) It relaxes me, and so far I've never made it past U. Maybe tonight I'd better start at the end and work myself forward. I'll start with Zorida. I don't know a lot of Z named people, so I get the feeling I'll be thinking of her a lot :)

Also, I stay in bed until 8:00 am. So from 7:00 pm - 8:00 am my phone will be off. Also, my big vice is reading and reading and reading and then sleeping. I can read from 7:00 pm - 8:00 pm then I have to turn out the light. And I'm back to mandatory naps. 1:00 pm - 3:00 pm. No reading at that time either (unless I want to get into bed early).

Some of this might sound crazy, or all of it for that matter, but I need boundaries. I want to go and go and clean and do stuff. I feel proud when I'm accomplishing things, but it is so important for me to take care of myself and rest. I have been a very bad girl, and I have not been resting much. That is all changing, though. And no more black tea while fasting. No caffeine while fasting, actually.

I want to be a normal girl that can have a coffee or black tea, but that has been a problem even while eating regularly. Ever since the brain surgeries anyway. It's sad, but things change. I have so many things that I can not do, or eat, or drink, but oh well. I can be sad, then I try to move on. It's not the end of the world. I keep trying to trick myself into telling myself that it's just like aging. When you get older your body starts to tell you more and more about what it doesn't want.

Anyway, I need to get prepped for bed. Sweet dreams everyone.

Oh ya! Today was day 7. I have decided to stop the fast tomorrow and switch back to the regular reduced calorie ketogenic diet until the MRI on the 20th. The only exception is that on this Saturday, the 13th, Dan is taking me to Salty's on Alki for brunch. I will stick to my ketogenic - low carb foods, but I will not limit my calories. It's a treat, and a celebration because April 13th is the three year anniversary of my diagnosis. Obviously I'm not celebrating the tumor, we are celebrating the fact that I've been alive for the past three years. My diagnosis could have been much more severe, like anaplastic astrocytoma or worse yet a glioblastoma. I am grateful every day that I'm alive, and on Saturday Dan and I will cheers to some dungeness crab and to our beautiful life together. I'm really excited :)


  1. Resting and relaxing sounds good to me! But for you, it is so important. When you over do it, your body will let you know it. I am glad you are listening to your body. I am doing a better job of taking care of myself too as I see such benefit from it. How silly we all are sometimes thinking anything is more important than health!!! As you float off to sleep, please know you are so loved....xxxoo

  2. Jess....Take good care of you. We love you!

  3. Love you Jess. Sending hugs and strength. Sara Deason

  4. You two are so loving and such a wonderful couple!! It is so refreshing to see someone who shares so much love and appreciation even through hard times and adversity! You are amazing and I love all that you share--the good, the bad, the happy, the sad! Big hugs to you and Dan!

    Love, Maleka

  5. Always thinking about you!!! You are simply amazing! And strong! And inspiring! Wow!
    Elissa Joubran Ballew

  6. I don't know you - a sister of a friend subscribes to your blog and I found you that way. I'm so happy I found you. I'm 32 - a mom of 2 children and a wife and I've recently been diagnosed with a condition that doesn't have a phenomenal final outcome. I found out even more recently that there's a very good chance I passed this horrible condition on to my one-year-old son.
    All this being said - I wanted to thank you for your positive outlook. I've adopted the same - really enjoying the sunshine and a great meal and laughs with loved ones, for instance. I feel like you and I might be on the same wavelength and I want you to know that I pray for you very often. Thank you for your posts - and I hope your brunch was yummy yesterday!


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