Jen Bulik's Journal
Where I've Been.
Written Sep 18, 2013 12:51amI've been mulling around trying to come up with something to write about. I didn't have much content for what ever I came up with. I usually have plenty of content. One minute I am typing, the next I am staring and asleep and dreaming. This doesn't make good for driving.
I'm confused. I'm not just, "confused"ut. I didn't have much content for what ever I came up with. I usually have plenty of content. One minute I am typing, the next I am staring and asleep and dreaming. This doesn't make good for driving.
I'm not just, "confused". I'm literally confused it feels like. Like I really have a hard time remembering, I wear these pain patches and they need to be changed every 3 days. I'm not remembering when I've changed them. I thought I could remember this one, but no, I was changing them every other day.
Ive been getting mad, feeling a lot of resistance, sleeping well and waking up in terrible amounts of pain.
I have been exploring new hats though. I never thought I would be wearing a tie head wrap or a scarf around my neck. Though here I am, I have a head wrap and I'm wearing one of my many scarves.
Oh, the scarf is for the nasty rash that I developed on my neck and head. It looks like a really bad sunburn that is trying to heal. Though apparently this is a good thing.
It means is's working. Yay! Yay!
I picked up a cane at the mountain view art and wine festival.
Written Aug 23, 2013 6:40pmI've been trying to get this post out for days. There have been many drafts, but the drafts haven't been the right flavor.
But I know now why, this has been the week of fear. I haven't wanted to describe it, or acknowledge it, or talk about it really. I noticed a thought I had , it said "if you call it out it will come to get you like the boogie man. Which is not true either. When I name it, be with it, hold the fear it changes, maybe talks to me or gives me new information. Or so my experience says.
What has made me so afraid this week are the sensations in my body that hurt. The mind tells me that something is wrong and creates stories to support this.
I have woken up in pain most days this week. The alarm clock on my phone is not consistent and I don't know why yet. So I set it to take medicines and it doesn't go off, then I wake up a few hours later and can't move from the sacrum down. It's a dull radiating strong sensation all the way down to my feet. That was Monday and Tuesday and it did lessen progressively as the week went on. Today it felt like bone pain, I felt it just in my knees down to my feet. And as I hobbled around the apartment, the painful sensations diminished some and more after the pain medicine kicked in.
One of the pain medicines I use is a fentanyl patch and when I talked to the hospice nurse I realized I wasn't using enough. So that helped after I changed it.
Waking up hurting did take a toll on me though. I feel freaked from all the stories the mind has been telling me about dying and what that pain means and how much more pain medicine I have to take and my body looking different and new pain sensations. It's pretty rough.
And as I say that aloud, I'm prompted to see that there is another story. A story that is just as compelling. The one that says "this is healing pain and sometimes healing hurts". And "you've been doing a lot of emotional processing during the past week and this pain is letting go all that doesn't serve you".
I am going to choose the second story. Even just writing it down I'm feeling better about the situation. I'm crying with relief knowing that there is another choice. Choice is hard sometimes to see with this cancer.
The Truth in the situation is, I have no idea what the pain is about, what it's doing or moving or what it means. I'm just going to assume that it has my best interest at heart.
Written Aug 19, 2013 9:55pmI was hoping this would be a fabulous weekend. It was hard because there was a lot missing. This happened to be the theme of the weekend, “WHAT’S MISSING?”. Many times a day I saw myself looking for what wasn’t there. It was a real bummer.
Jeff and I were gifted a two night stay at this gorgeous hotel in Sausalito, Cavallo Point. We indulged at the Murray Circle restaurant and we each received 60 -minute massages at the Healing Arts Center and Spa. The experience of the hotel was amazing. The room was luxury, the scenes were gorgeous and the service was top notch. I could definitely see this but it made it hard through eyes of pain.
I’ve been having a hard time getting up in the morning. I wake up with a level 8 pain from the waist down. This has been the last couple days. I have a couple theories, like “it’s my left side, I’ve been sleeping on my left side.” Or, “I need to set the alarm to wake up and take more medicine”. And then I put down the theory, because I really don’t know.
So the pattern right now is that I’m pretty incapacitated by pain for about 5 hours until all the medicine kicks in. Boy does this coax my mind into frenzy. Things get ugly up in my head during this time and I go to scary places. And then it subsides and I can relax.
When we got to the hotel, they had given us a room up stairs. I looked at it and slowly hoisted each leg up each step and realized, “no that’s not going to work”. I waited while Jeff went to speak to the manager. He took care of it immediately but we would have to move rooms twice. They couldn’t accommodate us for two nights on the bottom floor in the same room. Inconvenient. It did make it better that the third room was really amazingly beautiful and the location was great and it had a bathtub.
I had a fall.
I was walking, coming around a curve in the side walk and bailed. I was on the ground, bracing myself with scraped up hands and my knees burning. I hear Jeff yell and I think, “f#@k, this is going to sting”. And it still does. The knees and the burning and bandaids have been bothering me all weekend, along with the level 8 morning pain. So inconvenient.
Also inconvenient is when the power went out in most of Sausalito, including the hotel. The hotel did not have any flashlights. They gave out LED key rings Jeff had to walk a couple blocks to the main building to get. I wanted to take a shower but I was already shaky in the legs and had a bloody, stinging knee.
What to do, I should have had a spectacular time full of amazingly, skipping bubbles of enjoyment. Instead I was hobbling around, super bitchy in the morning, with a knee that burned and ached.
I focused on the little things. The good conversations with Jeff, the bar snacks from the restaurant, feeling myself sitting on the chair, the hat resting on my head.
These times have been discouraging for me because I see myself reaching and wanting more. Like some kind of guarantee that this “pain” does not mean the worse and I’m going to make it out ok. But I don’t know that and frankly the next person doesn’t know that either.