December 27, 2023

Happy Holidays

 Hi all!

I hope your holiday season has been joyful, comfy and full of love.

The guy and I had a most wonderful Thanksgiving and Christmas. Totally chill and fun. 

If you're ever in the area of Corralitos, there is a really fun winery, El Vacquero. Friday nights there is live music and dancing from 6 to 9. The wine is excellent. You can bring in your own food or you can pick up some munchies at the various food trucks they have parked out front. 

I am looking forward to 2024 with every bone in my body. I have seen my therapist almost weekly since November 2022. She's helped me resolve some life-long issues, a couple of family issues and helping me with a Death With Dignity plan.

A clinical trial agency contacted me to see if I would participate in another IPF trial. After all the hoops and tests my pulmonary function did not make the cut. The  fibrosis is progressing. Sucks!

I think I've written about the pressure of trying to keep moving while in 9+level knee pain. I had a knee ablation which has helped a little but it's only been a month so maybe it will still improve. Hoping.

I had a dream the other night. It was weird and incredibly lucid. 

The pain in my knee, back and neck is off-the-charts, fatigue is my constant companion and I get short of breath just walking to check the mail or walking down the hall to my bedroom. 

In my dream, I was crawling on the floor and it seemed as if 3/4 of my soul, or conscience (or whatever you want to call the thinking-you) was out of my body and I was trying to kick my body away. I couldn't get away from my body and I was frustrated that it seemed to be clinging to me. I remember being very lucid and wanting to ditch my body so bad; angry that it wouldn't let go.

When I woke up my first thought was wondering if this dream is part of the process of dying. Processing how to move on without one's body.

I've had out-of-body experiences before. I've practiced astral projection off and on for years, but I've always known that I would be returning to my body. I've never not wanted to belong to my body. 

I guess it's back to my therapist after the first of the year!!! 

One step forward, two steps back.

7 comments:

  1. That's quite the dream and very understandable, given the chronic pain and fatigue you're in. You are a real Warrior Woman and I wish you all the best in 2024. May you find many things in which to take joy and satisfaction this coming year.

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  2. Happy new year Toni. Wishing you good doctors, the best meds and loads of love. Thanks for checking in and keeping us in the loop.

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  3. What a vivid dream! I can understand wanting to get away from the pain and limitations that you have been living with.
    I'm glad to read that you and the guy had good holidays and a wonderful night out. That feels very buoyant and uplifting. I hope you have more of those good times in the coming year!

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  4. Hi Toni, you've been on my mind lately, wondering how things are going with you. I hope 2024 has brought good things to you so far and especially hope that pain management for your knees has improved. Best wishes to you!

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    1. Hi Debra, Thanks for checking in. Life has been filled with lots of ups and downs.
      I had ablation on my knee which reduced the pain from a consistent 8-9 to 2-3 which is good but it's also made me a bit unstable (physically...mentally and emotionally I'm holding on!!!) I've been using a walker which really helps give me the confidence I need to move around.

      UC Davis helped me get a grant to pay the $3000/month copay for the medication I need to help slow the progression of fibrosis. The first bottle just arrived today. Cost: $15000 for a 30 day supply! My pharmacy insurance is paying 12,000 and the grant covers the rest. What a blessing the grant is.

      Weird holding a bottle of 60 pills and knowing it's worth in the U.S. Apparently the same medication is available in India for $200 a month.

      The Guy and I are getting out with our cameras at least 2 to 3 times a week. He actually was in the top 100 of a couple of International Landscape Photography contests and has had several photos published in a local magazine. I spend the rest of the days painting; mostly watercolor.
      I hope that all is well with you and 2024 is your best year yet.

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  5. I am sorry you have pulmonary fibrosis, a really sucky knee and face end of life more quickly than you might otherwise. Since we are now three months into 2024, I hope you are still enjoying photography and painting.

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    1. So good to hear from you! Happy Quarter-Gone New Year!

      Actually, I'm doing really well. We're getting out a lot. The mountains have been offering up some incredible visions to capture both with camera and paint.

      Life is good!

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