notes
Dear Diary,
I have figured out one of my triggers: eating. Because I had GERD this late summer I had already trained myself to not eat anything remotely delicious so the loss of food is not as much of an extreme development as you’d think. Yesterday I ate: 6am -one cup of coffee with half and half and a little coconut palm sugar (I refuse, REFUSE, to give this up as it is one of the very very few pleasures I have in the day and I wake up not-in-pain so it rarely triggers a full blown attack, 9am - alkaline green smoothie, 3ish - rice cake with avocado and roast turkey, 7ish - watermelon, cucumber (no salt), steamed green beans (no salt or butter). It’s been so long since I could eat delicious food that it really hasn’t been much of an adjustment. Ho hum. And I love watermelon.
The neurosurgeon I met with recently has put me in the care of Dr. Cherry, who I will talk to on the phone on Nov. 21 (eyeroll). Her assistant called me to ask me some questions before I talk to her. 1. “Do you smoke?” “NO.” 2. “Do you ingest cannibis in any way?” “HELL NO.” 3. “Do you have a psychiatrist?” “Funny you should mention that, I have an appointment soon. “ “Good, 100 percent of our patients have a psychiatrist.” Me, to myself, “I KNEW IT!” So, note to self: you know what care you need and you have to advocate for yourself even when the professionals who should be doing that for you aren’t. Duh. Some people do this naturally. I do not. I learn this lesson every day in new ways.
Also, this assistant asked if I had heard of EMDR therapy and I was like, “Funny you should mention that too! I was wondering if that might help, given how the neurosurgeon explained the genesis of this condition.” “Yes, a lot of our patients are helped with EMDR.” Me, to myself, “I KNEW IT,” Note to self: your instincts about what might help you and what does help you are correct, no matter how much you second guess them and how confused you are in this state.
I have had several days with relatively little pain. They have felt like miracles. They are not pain-free, but they are suicidal-thoughts-free. I think reducing the amount of food in my mouth, acupuncture, and this ramped up med regimen get the credit. It is unfortunate, for my insatiably curious brain, that when I’m in this amount of pain I of course throw everything I can at it because when something works I don’t know what it was and I am unwilling to conduct double-blind experiments to figure it out. Threw spaghetti at the wall, spaghetti stuck, spaghetti is a messy jumble of noodles.
Originally Kaiser was unable to get me an appointment with a therapist until Dec 2, which was stupid and ridiculous, so I reached out to my old therapist in Oakland who I adore but who isn’t in-network and asked if she could see me. She said yes and then Kaiser called and said they had an appointment so I currently have a glut of therapists, both of whom I have just seen. And I need to try EMDR! Embarrassment of riches.
I went to an orientation of a Mindfulness Stress Reduction Class that Kaiser offers and 25 people were there, all in varying states of stress/pain, and we were asked to go around and briefly say why we were there and after a lot of “work stress” “chronic pain” and the like one woman said, “Well, if I’m being honest, TRUMP!” And now I have a new best friend. I signed up for the class which starts on Tuesday and is a weekly 2 1/2 hr guided meditation session, essentially. I’m so glad Kaiser offers it and again, grateful that I can give that kind of time to my health and sanity.
It is REMARKABLE how comfortable I am in therapy and how grateful I am to be seen in that way. I attribute my comfort to the fact that my mom was a therapist when I was growing up, and not only was that what she did for a living but she was a member of a group of therapists who had a building and business called The Synthesis Center and they practiced Wholistic Psychotherapy (I know, so late 70s/early 80s) and this building was very close to my house and I spent a lot of time there and students of the center would stay at our house on weekends when they were doing workshops. When I explain my background I say I grew up in an environment of non-judgmental curiosity about the human condition fostered by this weird community my mom was a part of. Anyway, in general, I hate going to the doctor and it is just really remarkable to note the difference in these offices, as I visit both of them many times a week.
Executive function, I vaguely remember having some. The amount of misspelled words, the amount of times I have pressed delete, in the making of this blog post is frankly shocking. If I don’t write it down, IMMEDIATELY, I will forget it and I will never remember a whiff of what I was supposed to remember. My day starts by carefully going over my notebook and calendar, getting really clear about what I have to do and who I am going to do it. I went to spell funny (above) and spelled out phunny, as if I have ever ever in my life had a heard time with mixing up f and ph (I have not). I’ve described how this condition is like a black hole before and now I am experiencing that in a different way: normal functional humdrum life stuff is being sucked into my brain cortex, were I live now, in survival mode. Luckily, I love making lists.
I am aware that I run the risk, for readers, of just sounding like a complaining machine, a laundry list of pain and ills, and that that can be a bummer. But I need to remind myself that I am writing this for myself and for anyone who wants to know honestly what is going on with me, and this is that. And that when I come across a blog of someone’s facial pain I feel a tender closeness and gratitude that they shared their pain with me. So, shut up part of me that wants to out on a happy face and lie to people!
Love you, mean it.
xoS
PS - after I posted this I left the cafe I wrote it in and walked a couple blocks to my car and discovered I had left my keys in the cafe, on a bench. Point made.