acupuncture

Dear Diary,

It’s been a week, a full week of no pain. Where am I? Who am I? What fucking nightmare have I been in?

6 weeks ago, when I went in for that initial dental hellscape experience, seems like 6 years ago. How could it be that I was LITERALLY suicidal 3 weeks ago and today I have no pain in my face and I am tapering off the drugs I quickly ramped up not so long ago?

Acupuncture. (I think) Acupuncture. (I think)

I am trying to sit with the fact that I will never know what is working right now, and that what is working right now might not work next time. But right now the major difference in my care (as opposed to previous episode’s care) is that I got into see Elena very early on. Yes, I tried a new drug this time around, and I’m sure it helped. But in 8 episodes over 11 years I’ve never had one last less than 3 months. And while drugs have helped it felt a little like Hodor fighting off Sauron. This time around it’s as if, well, shit, I am not a big enough nerd to continue this metaphor. If drugs were a plodding, brutish, dull way to kind-of beat back the Super Villain Face Pain, Elena is like a laser-sharp, highly efficient way to eradicate it. Like in the end of that recent superhero movie when half of them turn into dust, like that. That’s what it feels like, today.

But and also, I go in for more dental work on Thursday. It’s just a full cleaning and fixing two fillings on the other side of my face, but my anxiety is mounting. I have requested a full mouth Novocaine party with nitrous and I will be very very clear to the technician that they need to get away from my back molar as soon as possible. But I have to be prepared for it all to come rushing back. Ugh, maybe I shouldn’t have tapered the drugs, but I hate the so much. Ugh ugh ugh but also, hooray for a week of no pain.

Love you, mean it.

xoS

life planning

Dear Diary,

On Saturday we got a visit from a nurse from the Life Planning Dept. at Kaiser. As you’ll recall, I was referred to them by my neurologist, a referral that led to some consternation that only grew with my MRI results. The fact that the department sent someone to my house is really all you need to know: they deal with really really sick people. Me?! Me? Me. Me?

In the time between my referral and the appointment I have done a hell of a lot in terms of medical and mental health appointments, and some cocktail of meds, chiro, and acupuncture have reduced my symptoms to where I am no longer thinking of killing myself (yet). So when Michelle showed up in Fruitvale and knocked on my graffiti-tagged door I felt a bit self-conscious about it all. I hadn’t totally grasped what the appointment was for when it was first suggested to me - I think it was basically: if I try to kill myself and don’t totally succeed let’s have my shit in order. And here she was and I’m not even suicidal anymore!

First of all, she looked great. In her early fifties, she is a dapper butch lesbian covered in tattoos and sporting a bowtie. I mean, welcome Michelle. She was immediately warm and likable and I wish she was my friend. She is cut out for this line of work. At first the appointment had been for just me but when I asked if Matthew could do it too they obliged. I think normally you have to be terminally ill but the woman on the phone caved when I said that I thought this work is essential for everyone and why not do his along with mine since he was required to be there anyway? So Michelle sat down with Matthew and I and proceeded to ask us questions that every single person alive should be thinking about.

Being raised by a Quaker-Buddhist who regularly emphasizes the idea that “everything is temporary” definitely for sure enabled me to enter this conversation happily and readily. Being a philosophy major nihilist who is not totally in love with being alive definitely for sure enabled Matthew to glide right into this conversation. Both of us talk about the future A LOT, and we plan for the eventuality of our deaths maybe more than most Americans? Definitely more than most Americans. I mean, I personally think it’s the greatest gift you can give your loved ones upon your passing. Just don’t make any part of it harder than it needs to be, you know?

We answered questions about our past health issues, our current ones, any ways in which we’ve been a part of the end of a life in our families, and then got on to questions about the future. She dug into specifics of our preferences should we have dementia but are physically well, are mentally fit but physically ailing, are injured in an accident. She stayed for an hour. I saw her Red Sox tattoo through her pink button up and we talked about Massachusetts. I wished she would stay longer.

I won’t get into what Matthew and I said in our interviews that much but I will reveal: we are ready to go when it’s time. And more than anything I can imagine about my death I am most fearful of being a burden to Zane: financially, physically, and otherwise. I don’t want to leave a ton of physical objects and ephemera he has to sift through, I don’t want him to undergo the mental and emotional stress of having a mother who doesn’t recognize him, I don’t want him to have to lift me out of bed and help me in the bathroom, I don’t want him to have to spend one dime on my care should I need it. So that is a part of my goal while I am alive.

If you haven’t read Actual Gawande’s Being Mortal get thee to a bookstore! Or start here. And if you don’t know his work, here are all his amazeballs articles in one convenient location.

Love you, mean it.

xoS

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.

lies and the lying liars who tell them

Dear Diary,

Even though my appointment with the brisk neurosurgeon was brisk I was able to ask some important questions that had been plaguing me for 11 years, the most important of which has been: was I injured by my dentist or oral surgeon (I had a brutal wisdom tooth extraction quickly followed by a 6 hour long procedure at the same site in my mouth)?

I’m gonna brag here: I’m pretty smart. I like to know things. I am a curious person who is full of more questions than I am anything else you can fit in your head. I am never satisfied to just hear something, read something. I ask why? in my head probably 1,000 times a day. I deeply regret not having pursued science. So when I have a physical ailment I never go to the doctor to just get a diagnosis and prescription. I want to know why. Can I eat differently, buy different products, invest in prevention in some way? Doctors never want to go there, as we’ve established they are all about dealing with symptoms. That’s their only goal in their 20 minutes with you. It’s supremely frustrating for us smarties of the world. However!

I asked my question and he gave a brisk but meaningful response, one that makes sense to me, that opens up new possibilities for treatment (in my heart and head), one that makes me feel like this mystery has been solved.

He said, “So a lot, A LOT, of facial pain and TN cases come as a result of dental work. And after the emergence of the pain a lot, A LOT, of patients get lots of teeth removed, convinced the issue is the teeth, before getting to a point where they realize this isn’t true and finally getting themselves to a neurologist. The truth is somewhere in the middle: the pain is a result of dental work, but not of dental damage. The dentist did everything right and didn’t physically damage any nerves. But the procedure was so long or so traumatic or so long and traumatic that your nervous system perceives damage and that perception creates a cascade of symptoms that mimic actual damage. You know how amputee patients feel phantom limb? They used to think the nerve endings were damaged and would actually just amputate a little higher and then a little higher. Eventually they came to think (no one knows for sure) that the pain was actually being created in the brain. The brain was filling in holes that weren’t there in reality. So, yes, your face went through a traumatic event. But it wasn’t damaged. Your brain has created a pathological response to the trauma that it revisits every time you get dental work. It revisits it sometimes without dental work. It’s created a fucked up (my words, not his, too bad), pathological response to a real thing that happened to you. Your nerves are lying to you because your brain is telling them to.”

This makes sense to me. I can put this question to bed, and I can start asking new questions. If amputees can hold a mirror up to their limb and feel relief is there an equivalent treatment out there for me? Could EMDR therapy help? If not with the physical pain perhaps the anxiety that comes with it? What’s this? Is it hope? If it’s not hope it’s at least energy. I am not trudging along in familiar territory anymore, I’m on new ground, seeing new things, hearing new things, and one of them might be a thing called hope.

Also, I found a Facial Pain Support Group in the East Bay and I go to my first meeting in November. I am more than a little scared but also more than a little excited to talk about all the questions that have been piling up since the appointment with Mr. Neurosurgeon.

Love you, mean it.

xoS

meeting your death

Dear Diary,

3 weeks ago I was reclined in a dentist’s chair with a numb mouth and tubes sending the sweet scent of nitrous oxide down my nostrils. I was as high as I have ever been. I was meeting my mind in profound ways. Have you ever been on nitrous? I encourage you to make up an excuse for getting it the next time you go to the dentist. Once you get past the slightly awkward sensation that you might be leaving your body you can settle in for the trip of your life.

I was deeply attuned to the music playing vaguely and mutedly in the far distance. It sounded like a rave party on horse tranquilizers. It came and went as my brain would remember to hear things. The dentist and his assistant tried to hold a conversation, something about someone’s birthday. The assistant did her level best to sound interested as the dentist droned on, the way that women do, the way that men do. I had major insights into the way the Patriarchy works but they have since left my brain. It’s hard to hold on to anything when you’re on nitrous. Ideally you would experience nitrous with a voice recorder and no dental work.

In the middle of the procedure, which I later found out took TWO HOURS (felt like 30 minutes, again, thank god for nitrous), I had a thought that I am unable to shake, remarkable given the fact that I promptly forgot two hours of pretty profound thoughts that I was fighting hard to keep. It was this:

Oh.

This is how you will die.

Not on a dentist chair (although, maybe, who am I to say?). Your teeth will kill you. Maybe not this time around, but eventually. When your teeth have finally reached a critical point and you are going in for more and more work, when you’re on the 3rd replacement of this fucking molar (they only last 10 years on average); there will be a point when you look at your life and you say, “thank you, that was lovely, my face hurts too much now.” And you will take your own life.

My grandmother just died 2 months shy of her 102 birthday and my other grandmother died at 97. Both of my parents are remarkably well and active in their 70s. There is very little cancer in my family. Some vascular issues. But I expect to have a long life. And were it not for this nerve I probably would, if I manage to stay out of harm’s way. But I don’t think I’ll see the end of my natural life. Today, that’s how I feel today. I know, maybe tomorrow brings a cure. Maybe. I hope so.

I find myself hoping that Zane doesn’t have children so that it will be easier when the day comes. I look into the future and see myself as maybe 70, but not much beyond that. I used to plan my 90s, trying to be realistic about Matthew’s chance of staying on with me, but now I imagine I will leave him a widower. What that would do to him. Feeling like you have met the reaper and you know when he’s coming when you don’t have a terminal illness and certainly not one that is going to do its business anytime soon creates a cognitive dissonance that is intellectually interesting to engage with. I kind of like it. We all know that we are going to die but very few of us can walk around knowing what it will look like.

If this has made you sad, I’m sorry. It makes me kind of happy, kind of warm. If Matthew’s play Life Plan has taught us anything it is that living without knowing when or how you will die is a bit of an anxiety game. I am all for anything that can reduce anxiety and knowing my teeth will most likely kill me is oddly doing that.

Love you, mean it.

xoS

oh what the fuck

Dear Diary,

I got the crown with the help of Atavan, novocaine, and nitrous oxide (good lord I love nitrous). I got through the UNIMAGINABLE, INHUMAN, CHEW MY OWN LEG TO GET OUT OF THIS TRAP pain when the novocaine wore off with the help of Matthew’s fingers and hydrocodone. There are a couple pressure points on my temple, when rubbed hard enough, that provide some relief. Matthew discovered them a year and a half ago when I was in the same pain after getting a crown on the same damn tooth. He rubs them so hard I feel nauseous but also…good? Nothing feels good. In less pain I guess. And I had insisted my doctor give me something for the pain of the crown itself and the novocaine injection site (she refuses to give me pain meds for my face pain). THANK HOLY FUCK. I couldn’t move it hurt so much. Getting the pills to my mouth took hours it seemed. But they did the trick and knocked me out from 4pm to 6am.

I woke up with back-to-normal pain and went to Redwood City to meet with a neurosurgeon. Initially, after that annoying note from my neurologist, I had thought maybe I shouldn’t go. I wanted to see a problem that surgery would help. Thank holy fuck I went. The appointment was on a big Kaiser campus crawling with sick people. I went up to the 3rd floor of a building called The Tower to the Neurosurgery Department and waited in a room with other Neurosurgery patients, a perspective-lending experience if ever there was one (also, why is perspective lent and not given?). I couldn’t help but try to catch side glimpses at my fellow cohorts. The young woman accompanied by her parents who was dressed in her PJs and had her hoodie hood high on her head was especially curious to me. I felt so sad that someone so young was so obviously in pain and seeking brain surgery. Sigh.

Eventually, 20 minutes late, my doctor came in. When you get higher up in the departments of these medical specialties you find more white men, as he indeed was. I tend to try to avoid white men in my medical experience but at this point I want to talk to everyone. He was friendly but brisk. Everyone is brisk. They have strict time limits for their appointments. And I have 11 years of not being invited up to this level of speciality. Not a good match. He told me he wanted to ignore every other doctor I’ve ever seen and just hear directly from me what my experience has been, from the very start. It was good to be able to recount my journey to someone with so much experience with facial pain. He took notes and behaved like a detective. At the end of my sad chronicle he said, bomb drop mic drop: “I don't think you have Trigeminal Neuralgia. I think you have Atypical Face Pain.” OH WHAT THE FUCK.

“You are a part of a big community of Facial Pain, think of it like a pie, and in that pie is a very thin slice called Trigeminal Neuralgia. It has a very specific set of diagnostic markers, ones we can isolate and name and then come to a diagnosis of TN. Everything else we call Atypical Face Pain. TN sufferers experience their pain as electrical attacks that last up to a minute. Triggers can be as simple as a breeze. Two things tell me you don’t have TN: the fact that your attacks last 30-60 minutes and not seconds and the fact that having someone rub your face helps and doesn’t hurt you. It doesn’t mean you’re not in pain, or that your pain is any less legitimate, it is just part of a more amorphous and broad diagnostic grouping.”

Oooh, okay, breath. Breath. Don’t cry.

1. Three neurologists have listened to my symptoms, including the one who sent me to you and who I am currently under the care of. WHAT THE FUCK.

2. Having waited for a diagnosis for 4 years it was hugely relieving to be given one, one with a name that was specific, and specifically, had the word Neuralgia in it. People don't know what that is but it sounds real and awful. Having this diagnosis allows for a feeling of being a part of a community, even if I haven’t ever managed to meet someone in it. Being told I no longer have that diagnosis feels a bit like a rejection. I can handle this with just a little bit of mental work, but none the less, blech. Feels yucky.

3. Calling the pain I go through Atypical Face Pain is a bit like telling someone who has believed that they’ve been getting migraines for 11 years that no, they only get headaches, when anyone who has ever had a migraine can tell you that a migraine has nothing to do with a headache and to say their names in the same sentence is an insult to all migraine sufferers all over the world. I don’t have Face Pain. I mean, I do, right?, that is what is it at its very basic essence. But the name doesn’t give any weight to the depth and breadth and intensity and life-ruining qualities of that pain. So fuck that, I don’t want to tell anyone I have a disorder called Atypical Face Pain. That’s just dumb.

A subsequent search for info on this bullshit category of pain renders a lot of pages that go under the guise of face pain but really just want to talk about Trigeminal Neuralgia. I get why, it’s a much more orderly and proper condition. And geeeez, just when I thought I was getting more clarity and reaching a narrower level of care I get pushed back down into a realm of blurry vagueness. So now I’m part of a different community, one that will always be subjugated to TN. Great.

I ended the appointment feeling better, despite the new diagnosis. I feel better because the doctor believes that I am a good candidate for the care his team can offer, even if the offering isn’t surgery. It is like I have unlocked the next level in this video game. He will share his notes and diagnosis with his team, all of whom specialize in various aspects of facial pain, and they will come up with a game plan for my future, one that will involve options other than just medication. While I am waiting to hear from them I am to get more SPG blocks — apparently it can take a couple times before people feel any results from them, so, why not? And I am now at the maximum dose of Baclofen and half the allowed dose of Gabapentin and I think they are having the effect of tamping the pain a bit, like a trumpet with one of those covers on it, can’t remember the name of that thing. I have attacks and they are bad but they are not suicidal bad. And I’m going to go up to the max dose of Gaba just to see what happens.

After my appointment I got a note from the doctor with some links to Facial Pain organizations and in a fit of excitement I decided to go to this conference. Again, I am unbelievably aware and grateful to have the privilege to be able to go. I have the money to pay for a plane ticket, the registration fee, a hotel. $1000 for 36 hours! This is a gift to myself, one that most people couldn’t make.

Now for the biggest question: WHAT DO I DO ABOUT THE NAME OF THIS FUCKING BLOG?!

queen for a day

I am about to go in for the permanent crown on the back molar, the one that started this bullshit. I am beyond anxious, there are no words. I’ve actually entered a dissociative state and I feel very calm, as if I am watching someone else getting ready to go to the dentist. I am on drugs that make me loopy already, about to take an Atavan and then probably Hydrocodone when I get home so watch out! I just might blog and it just might be funny.

mri

Dear Diary,

Yesterday I got an MRI done. I think I am the only person on earth who likes getting MRIs (I’ve only had one previously, but I enjoyed the experience very much). I like being in cocoons apparently. They cover you in a warmed blanket and cover your ears and slide you into an enormous machine that looks like Stanley Kubrick designed it and you spend 25 minutes zoning out to the sweet sweet rave tunes of the camera as it works. Half way through they injected a dye into my arm so that the camera would detect different things, I guess.

The results of my first MRI got me a diagnosis I didn’t want: surgery wouldn’t help. Some people with TN are cured by surgery because the thing that is the problem is the nerve is being compressed. Since I believe my nerve was damaged I knew it was a slim chance but I had hope. I pursued this MRI as a second opinion, so I could put the hope of surgery curing me to rest. I knew what my answer was going to be.

So imagine my surprise that I am sitting in a Starbucks trying not to cry in public and not because of physical pain but out of rage. I just opened my email to see that I had a couple things from Kaiser waiting for me. The first were test results which told me my brain looked normal in very convoluted and medical language (never really a good idea to send to a non-medical person, in my opinion). The next message was from my neurosurgeon.

Well, that isn’t good news. I knew it would be the news I was going to get, but I expected to get it this Friday when I go see a neurosurgeon in Redwood City. This Dr. Chaluvadi is the same neurologist who signed me up for Life Planning in the event of my suicide (not an appointment with the Psychiatric Dept.) and for a Stress Management class (not a Chronic Pain Support Group, which Kaiser also has). I’m just so, FUCK YOU. Why are doctors so fucking dumb? The brevity of the note is insulting. The sentiment is remarkably tone-deaf. I asked for a second opinion about surgery BECAUSE I WANT SURGERY.

Has there ever been a neurologist with TN? I want to go to that person.

Here is what I wrote back:

I don't necessarily consider this good news. I was actually hoping it would show some type of compression that surgery had a chance at fixing. If not, I am looking at having this for the rest of my life with no chance of a "cure." Am I incorrect about this assumption?

Should I cancel my appointment with the neurosurgeon this Friday?

The SPG block did not work at all.

I am about to go to 60mg of Baclofen and have added Gabapentin in desperation. I am currently taking 600mg at night but want to try adding it to the entire day. Do you have a suggested course and what would be the maximum amount I can take in a day?

I am desperate for relief. The attacks can go for 1-2 hours recently.

If I went to an ER would their pain intervention work?

Are there other medications I can add to the mix? Are there other things we can try?

I have started acupuncture (this morning). As soon as I left her office I had a two hour long attack and I had to just sit in my car.

At this point my word count was up so I couldn’t add you terrible heartless freak. Probably a good thing. But also, the fact that there is a word count is also so Kaiser/health insurance fuckery. I get that they don’t want people to unload on them but I often have more questions than the word count will allow and since their appointments are limited to 20 minutes I can’t get to to them in person either. FUCKERY.

The attacks are lasting so long now; I just can’t see how I am supposed to do this. In-between attacks I can function, smile, be present, but my back lower molar ALWAYS feels like it is deeply rotten and infected. I’m just used to it. If I put the pain I feel in-between attacks into the jaw of one of you you would want to die. It’s not normal, it’s not good, it’s very disturbing but again, I have 11 years of getting used to it. My nerves are liars, and mostly they are trying to convince me that my teeth need to be removed from my face. Lots and lots of TN havers get teeth pulled. It’s one of the most common results of having TN. I can’t believe dentists agree to do it actually, but that’s just a testament to how uneducated people, even dentists, are about TN.

So there you have it. I will have this for the rest of my life with no hope for a cure (and please don’t tell me to not give up hope. I never really had any. I need to focus on living with this thing, not hoping I won’t live with this thing. I like science and reality, it comforts me more than hope.) How was your day?

Fuck.